The People's Perspective on Medicine

Levothyroxine

Overview

Thyroid hormones come in a variety of formulations and brand names. Synthroid is the most commonly prescribed of all the thyroid supplements. That is because the dose is more reliable than natural products made of dried thyroid glands.

Synthroid is long acting and comes in a wide variety of doses that allows for individualized treatment.

When people develop a sluggish thyroid gland they often feel tired and weak. They may become constipated, sensitive to cold or anemic. They may also suffer with dry skin and hair, thick brittle fingernails and have shortness of breath when they exercise. Some people report clumsiness, weight gain, or puffy eyes.

Thyroid problems are diagnosed with blood tests. The best is one that measures thyroid stimulating hormone, or TSH. This test also helps determine the proper dose of thyroid hormone for treatment.

Side Effects and Interactions

Side effects of thyroid replacement therapy are rare if the dose is appropriate. Specialists recommend beginning treatment with a low dose and gradually increasing it until symptoms of underactive thyroid disappear and the TSH blood test is normal. This may initially require blood tests every four to six weeks and good communication with the doctor.

Signs of overdose include insomnia, heart palpitations, jitteriness, rapid heart beat, increased sweating, higher blood pressure, changes in appetite, and reduced menstrual flow.

Other adverse reactions of excessive thyroid levels include tremor, headache, heart disease, diarrhea, and weight loss. Report any such symptoms to your physician promptly.

A number of medications may interact with Synthroid or alter the tests that detect thyroid problems. People taking estrogen, asthma medicines, decongestants (including those found in over-the-counter cold or flu remedies), antidepressants, certain cholesterol lowering drugs, blood thinners such as Coumadin or heart medicine like digoxin  should check with a physician or pharmacist.

In theory, the herb guggul  might counteract thyroid-suppressing drugs or increase the effect of thyroid hormones. Monitoring thyroid function is prudent. Licorice  may alter the required dose of levothyroxine because of its impact on the thyroid gland.

Never stop taking Synthroid without first checking with your health care provider.

Special Precautions

Too much Synthroid can make a person more susceptible to osteoporosis or weakened bones. You may wish to discuss with your doctor whether you need tests to monitor bone density.

Thyroid replacement is usually needed for the rest of one’s life, and stopping the medicine suddenly could precipitate symptoms of inactive thyroid.

Don’t discontinue Synthroid without your doctor’s supervision.

Taking the Medicine

The usual recommendation is to take Synthroid before breakfast. Although this hormone is probably best taken on an empty stomach, it is more important to take it at the same time every day to maintain a constant level in your body.

Do not take this medication with iron pills, as they can interfere with proper absorption.

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
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I had graves dease an had my whole thyroid out 3 weeks ago put on levothyroxine 75mg I’m not sure how I’m surposed to be feeling at the mo. As before my op I was very hyper after my op my calcium level dropped now I’m on 2 calcium pills 4 times a day I did put half a stone on but now starting to lose weight again.

I’ve just had the thyroid surgery 3 weeks ago, removing 2 parathyroid nodules and half of my thyroid. I take an antipsychotic med that keeps me sane, and have been taking temazapan/restoril to help me sleep at least 4-6 hours a night, and alprazalam/xanax as needed for anxiety.

And prior to the surgery, for the last 2 years, I’ve had esteem anxiety and depression, and also had a problem with my heart beating really fast, 80-100 beats per minute, with out any physical activity. I went to a heart doctor… and was told after several tests, no issues, get your thyroid checked, And that proved to be the issue. So, after my surgery, My Endochronologist, put me on Levothyroxine.

I just started taking Levothyroxine .025 cmg, a baby dose per the endocrinologist, at 5am in the morning and then try to sleep till 9am. On the 3rd day, my heart rate returned to normal, and I was feeling not nearly as depressed, and was finally feeling elated. But on the 4th day, I got a severely dry pasty mouth and absolutely could not sleep, worse than I have ever experienced. I’m figuring this reaction was from having to much levothyroxine in my system.

I then turned to the internet, and discovered all sorts of issues where people were suffering and inferring that Synthoid and the generic Levothyroxine are not the same quality. On the 5th day I did not take the Levothyroxine, and I was able to sleep some, and the dry mouth issue was much less. I’m considering asking my endocrinologist to prescribe the Synthoid, or perhaps advise me to cut the Levothyroxine in half or even in quarters to keep the overall dose low enough to keep me from feeling depressed and allowing my heart rate to beat normally. Do any of you think this is the right approach.

Can I buy Levothyroxine 0.175 for three months worth and what is the cost?

I have never been right on levothyroxine I have racing heart irregular heart beat now I am suffering with gastric stomach and leg pains. I am 74 years old I was on 75 mg then years later they phone me to say I’m borderline and reduced them to 50 mg now my doc wants to up them again,I don’t know if I’m coming or going, all I get when I ask anything is your thyroid is fine, and I’m not taking the amount they want me to, so how come my TSH is fine, if I took the amount they wanted me to surely they would know fed up with doctors.

Im a thyroid patient as i was using eltroxin 100 mcg before breakfast for the past 25 years. I feel this medicine made me swell, acidic as i feel pain in my brain/head, frequent palpitations, tiredness etc. i decided to stop using this pill and im not taking it since two days. Pl help me to leave this drug because i heard many stories if anyone stops using eltroxin they will have their kidneys fail, or heartfail or end up in coma. I want to get rid of this medicine any doctors in this forum please help me so that i want to be free of using this drug, i dont want to use it for my life long

Hello, I started Levothyroxine 50 MCG almost 6 weeks ago, and will be getting new blood work this coming week. I have felt a bit jittery, major increase in appetite (and as a result have gained 5 pounds in 6 weeks – and on top of it all, 2 weeks ago I slipped down a step as I was going to the basement and sprained my ankle. So i’m immobile for another several weeks. Could the jitteryness have caused my balance to be off. I have never slipped down the stairs in my lifetime. I am 50 years old, work out 4 – 5 days per week (before this darned ankle injury) – my thyroid was just a bit out of the normal range. I also take estrodial for early menopause (no ovaries or uterus). I was also JUST put on blood pressure medicine 2 weeks ago, (after starting this thyroid med). Could the thyroid med have caused my blood pressure increase? I feel like I’m spinning my wheels, starting all this new medication, etc. and I really do not feel any better than I did before I was put on the thyroid meds.? Any suggestions? I went to my GP for this thyroid issue and now, my blood pressure issue? Should I consult with an Endocrinology specialist? Thanks for any thoughts you could share with me.

I am on estrogen therapy for my IVF. My thyroid went from 2.775 to 4.5
I was on 50 microgram levothyrocine for everday.
Now i increased from 75 micrograms for two days and 100 for 5 days.
Not sure if this is a correct dose? Right now my doc increased estrogen from 62micrograms to 56 microgram of estrogen daily.
Please help. My embrio transfer is on Monday.

70 years old, have been on levothyroxine sodium for 10 year. I have put 5 stone on in weight, knees ,neck, pain in back, fingers. fill like I am dying. Every time over the years I have been to complain at the doctors, they have an answer, Oh it’s this or it’s that, loads of different drugs.
But I now realize it the Levo, I have weaned down from 175 to 25 mg am taking vits and eating well, I can now walk, and breath, but neck glands are swollen under left ear and color bone, I am in Spain so I don’t know what to do next, I am hoping I will be fine and not crash, been 5 weeks weaning down. :-(

I have just been diagnosed with hypothyroidism after going to the doctor for overall fatigue and hair loss. Prescribed 50 mcg levothyroxine. Have been taking for 3 weeks now and really don’t know what is supposed to happen. I was feeling better, but now have a cold, so don’t know if that is affecting why I don’t feel good now. My hair loss is still there and want to know if this will cease?

I am a 56 year old woman and had been happily taking levothyroxine 50mcg for about 6 years with no ill effects. It was discovered that I was borderline hypothyriod in a routine bloodtest. I had no problems taking the 50mcg I was prescribed, in fact when I began to take it I felt better than I had in ages, as I had put my recent tiredness down to the menopause. However, 5 months ago following another routine blood test my GP decided that I needed my dose of levothyroxine put up to 75mcg Immediately I had more energy and lost almost a stone in weight, all of which I was quite happy about. Three months later I began to feel jittery in the mornings and always really hungry even when I’d just eaten a meal. Then headaches started, which I had never suffered from before. I decided to go to my GP and he thought it sounded like thyroid overmedication. As he suspected my TSH levels came back very supressed. I am now on 25mcg and awaiting follow up blood tests in a few weeks. I have gone from feeling fantastic to feeling so very ill, with shaking vigorously from anxiety and panic attacks, increased heart palpitations (I already have atrial fibrillation), aching neck, shoulders, ribs, headaches, sleepless nights. I’ve never been so ill and worried. I don’t know what dose I’ll be put on when I have my upcoming blood tests. I can’t understand why my dose was increased to 75mcg in the first place when I felt perfectly ok on 50mcg. I wasn’t asked how I was feeling. I will be more wary from now and I am doing my own research on thyroid test results. If you suffer from thyroid problems I think you need to inform yourself as leaving to the professionals in some cases can be a potential mine field.

On Levothyroxine 100mg every day.
Wednesday 50mg Sunday Nil.
I had a total thyroidectomy 3 years ago let me tell you my life has never been the same again, lots if pain across the chest area, inflammation in the collar bone, sire feet and heels, shortness of breath, not every day but often enough.

The Sunday pill that I missed as advised by my Endo brings on the symptoms ever worse I get all of the above on sundays
My chest feels so so tight, very dizzy and light headed, can not wait to be monday so can take my 100 mg at 7 am
any thoughts on this please help!!!!

I have been on 50 mg for the past 6 years I am a 49 year old woman, I am healthy eat well and exercise daily , 4 weeks ago my doctor said my thyroid was low and increased my meds to 75 mg, I was ok the first few days and about two weeks ago I have been feeling weak , chest pains a bit sick all the signs of a heart attack so much so I went to my doctor Monday last had my blood pressure taken and a ecg which was all fine , the doctor said it must be the increase in my meds I paid € 85 for the doctor , she told me to ” keep a eye” on it and she would do full blood tests in a few months , I was okish for two days and today again I feel terrible , anyone any advice

I am suffering from hypo thyroid my TSH value is 8, normal is below 3. I was suggested for 100mcg of Thyroxine . From the day I had the pill I got dizziness latter after a week Dr suggested me to reduce it to 25mcg i was normal and I had my TSH level checked after 5 weeks it raised to 10. Now due this raise DR advised me for 75mcg Thyroxine I got my dizziness back. What should I do now? Taking 25mcg is not reducing my TSH level. Taking more than 25mcg causes dizziness, please someone help on this.
I am planning for my baby but due high level TSH DR also suggested not to plan now. I am so worried.

I have hypothyroidism been taking 100 mcg tabs for over 1 yr. My test results say I am okay, But I feel so depressed that I just stopped functioning. I don’t feel like showering, washing my hair or leaving my house. Being on 100 mcg I definitely do not feel like me. I feel so lazy and withdrawn from all my loved ones. I feel so nervous & scared ! I just want to feel happy again. Someone please understand how I am feeling ! And why?
Thanks, Rita

I am so sorry you are feeling like this, I take 150mg due to having thyroid cancer back in 2009, but can understand how you are feeling, as i too feel exactly the same. I feel everyone around me feel happy while I feel sad and drained all the time. It all gets you down. Luckily my husband has read up on the subject and gives me strength.
Blood work seems to always come back fine, only people living with thyroid problems are aware of the terrible life you have to live…

Is it ok to take contraceptive pills if I’m also taking Levothyroxine 100mcg tablet? Thank you.

I had total thyriodectomy in 2009 due to papillary cancer.. I was taking 175mg thyroxine until last week when hospital reduced it to 150mg.

I was having sever sweats chest pain, confusion… my gp said this was caused by my free T3 being 6.7 and my free T4 being 34… when will I see reduction in my symptoms?

16 years thyroid cancer. Wish I would have not done the surgery . This is no way to live tired weight gain depressed muscle cramping hands feet and achy .low bone mass due to suppressed levels. Will be glad when this nightmare is over. I am 74 and very tired of doctors who know nothing.ddd

Dear Sir or Madan, good morning!
I just want to know if it is safe to take LEVOTHYROXINE with vitamins since I take a lot vitamins.
Alicia
People’s Pharmacy response: Wait at least one hour after taking levothyroxine to take any minerals. There is evidence that iron and calcium can interfere with absorption of this hormone, and others might as well. Also, do not take levothyroxine within half an hour of drinking coffee or tea.

I have been on thyroxine for over thirty years after a thyroidectomy, but I still get some real bad spells that can last for months then I get a few weeks of felling bit more like myself. Is there any herbal teas that could help alongside the thyroxine to help me feel normal?

To Lynn M
What did the Dr say? I’m having the exact issue. I’m at a loss.
Thanks Lisa Me

I have been on levothyroxine for about 20 years. I have been on 100 mcg for about the last 8. The last 6 months or so, I have been having problems with hand tremors, irritability, extreme fatigue (especially after working out) and a 10 pound weight gain. My TSH in January was

I am 68 years old and have been on synthroid since 1990. All these years have gone by and now the doctor keeps changing it every 2 months, up to 175 mg down to 100 and now its been changed 4 or 5 times in the last 8 months. I feel awful, have 3rd stage CKD (chronic kidney disease) and a solitary kidney.
I am wondering if the medication is interfering with B/P meds even though I have great blood pressure without it. I have to take it for protection of the one kidney. I am at a lose for what to do with the thyroid, I feel weak, tired, one eye has drooped, legs like water. Just this week was put back on the 150 mg. I am at a loss for what to do and just feel like stopping it all together and stop going to the doctor. Thank you.

How long have you been taking estrogen? The very first thing that I noticed is that you are taking that as well as thyroid medication. Estrogen binds the thyroid hormones and sometimes, people need to have their thyroid medication increased to compensate for that. Also, it causes your lab results to become more unreliable. This means that if your doctor is looking at your tsh alone, they will most likely tell you that you are fine, even if you’re not, and that’s because they’re not taking an in-depth look. Ask for the free t-4/t3 test. With estrogen therapy or birth control pills, test results likely show that you have enough thyroid hormones, but they are binding with the estrogen and are actually not available for use by the body, in which case your free t4 would be low. That would tell your doctor that you in fact DO need an increase of thyroid medication. It can take awhile for you to realise how unwell you actually feel, and now it seems that your “red flag” symptoms are showing themselves.
Let me add a little personal note here. I have been taking birth control pills (containing estrogen) for quite a few months, maybe half a year, and I was never told that I might need more thyroid medication. I went on with things, thinking I was fine. I was continuously being told that my tsh was fine, good, normal, etc. Then, I got so tired that I couldn’t get out of bed, my hair was falling out, I was very hungry all the time, my feet were numb if I sat down for too long, my legs felt heavy, no energy or desire to do more than sit on the couch. I asked for an increase in my thyroid medicine (I take tirosint) and felt somewhat better, but not yet where I want to be. But, that is indeed the problem, that I need more medication. I can’t say 100% why that happened, but the only change in the past several months has been the ortho tri-cyclen.
My advice to you is to disregard that tsh number and ask for small increases until you physically Feel better. I had bad experiences with endocrinologists and therefore I get my medication from my regular doctor because he listens to me. Try to see a D.O. if you can because they are sometimes better listeners and are willing to spend more time talking to you. They are trained differently than M.D.’s. I am sure you have known this for a long time, but with thyroid disease you have to tell doctors what you want/need from them and maybe you won’t be their favourite patient for that very reason, but the important thing is that you get what you need to feel better.

On Levothyroxine for about eight years, at 1.0 per day. I have steadily been gaining weight, losing my hair, hair breaking off, skin dry and flakey, pain in both lower legs, pain in bottom of feet with some numbness, continuously tired. Am also on Estrogen, Clonidine, Metoprolol, Vitamin D3, chromium, MVI, claritin (for a possible allergy to the clonidine) and B complex. I always wait the 30 minutes to an hour before eating after taking all meds, take meds at same time every day.
TSH is normal, and that is the only thyroid test my physician routinely draws. Formerly worked for an endocrinologist whose specialty was thyroid, and he did other thyroid tests. I was diagnosed with Hashimoto’s over 18 years ago and was placed on a medication to suppress the thyroid, but I can no longer remember the name. I was to be on it until my thyroid stopped functioning, then given Levothyroxine. It was 10 years before I was placed on a replacement.
Cholesterol is high, HDL okay, blood pressure suddenly high about five years ago. I have heat intolerance, no problem with cold. Can you give me any advice as to what might be the problem and what I should do. I went to an endocrinologist who was head of the department at a teaching university but his personality was that of a rock at the bottom of the ocean an stopped seeing him. I do not know if we have an endocrinologist now in my area who might be proficient in treating thyroid problems.
Thank you in advance for your assistance.

First of all, you most likely had Graves’ disease (hyper) and not Hashimotos if they gave you meds to suppress the thyroid. Was it tapizol? From what you describe that Is my take from your description. Get to a good Doctor and get a proper diagnosis. Thyroid issues are ongoing, and I am having terrible ones since RAI in 1989. Good luck and hang in there.

Maybe you are allergic to the fillers in the medication. Have you itched the whole time you’ve taken it and what kind do you take (generic levothyroxine, synthroid, tirosint, armour?) you might want to try tirosint… It’s just made of gelatin, glycerin, water and the active ingredient levothyroxine. It’s a gel capsule, a more pure form of the medication. Just something to consider. Hope this helps.

I have been on 75 mcg and then the doctor switched me to 50 and now I have to take 75 five days a week and 50 two days a week and I am still itching, what is the problem and why can’t it get fixed. I itch my self about every six months so I think my body is adjusting to the medicine and then it switches. What is going on?

I am allergic to the fillers in the generic forms. When I first started levothyroxine I was also being treated for a sinus infection, and when I started itching I thought it was the antibiotic. A few weeks later and I was still itching! I Searched and found that the fillers could be the culprit. Presented that to my doctor (because I have found them to be dismissive) and she ordered the non-generic form. Finally the itchies went away! I have to pay more because of my insurance plan, but it’s worth not feeling that I’m going crazy!

I am 30 year old woman and was diagnosed slightly hypothyroid with my TSH level at 3.76 so they started me on 50 mcg of levothyroxine last September. I cannot tell you the problems I have suffered due to this drug. I have had terrible vertigo and dizziness, heaviness in my legs predominately my calf muscles, I have been bed ridden for about a month due to orthtostatic blood pressure problems… ( low and high pressure upon standing up ) cannot walk due to terrible pain in calves and vertigo, terrible hot flashes that will NEVER go away, heart palpitations, and it induced some of the worst migraines ever in my life. Before I took this med I was just fatigued and now I feel much much worse. I lost my job due to all these sicknesses… and my doctor said that even though my TSH is now at 2.56 she bumped up my levo dose to 75 mcgs. I told her that I want to switch to Armour. I feel like an old person when I should be out there doing and living my life. I have had various diagnoses through this year of hell. I advise DO NOT TAKE this drug. Find some other alternative to treat your thyroid problems. I am still waiting to feel better and pray that I can get my life back.

K.S. We have all the same symptoms. I am experiencing migraines for the first time in my life and now struggling with vertigo and some bouts of anxiety, clinically diagnosed with dry eye and have dry skin for the first time in my life. My resting heart rate is always around 100 now and I’m no where close to out of shape. Did you ever find an answer to your problems? My Hashimotos started at age 33 and I’m still trying to adjust to this new me.

Because they need to see her levels without the meds so they can prescribe the right amount she need. I’m a gulf war vet that had thyroid cancer and it all removed also. This way they can see what exact dose she needs. Don’t tell her but I felt terrible like life was going a hundred mph. And I gained a lot of weight. Was on .75 and they decreased it to .50. Always been around 200 220 but got up to 270 lbs last year. I have to eat very little to stay at 225. I wish you and her good luck. Sgt Green

yes I to was diagnosed with hyperthyroidism back in 07 and started seeing a endo cause i weighed 102 lbs in 06 and strted losing weight well i went on medication was doing no different till in10 istarted see a new endo and he put me on methemazole and that helped so i kept seeing him had scans done and finally in july of 11 i took the radioactive iodine pill now im hypo and am taking levo50mcg have had no bad side affects but my feet are numb and i get a screaming noise in my head when everything is quiet anyhow i just kept loising weight and now i weigh about 59lbs and im 4ft11in i just cant gain weight im thinking about taking some of those pills they advertise on tv to help you gain weight i also take a multi vit and half of a b6 50 mgs

I too take Topamax recently increased to 50 mg for migraines,also was on synthroid and cytomel,up until yesterday switched to armor. I have extreme hair loss and very dry, did you quit Topamax cold? heard that can cause seizures, been on it about three years.

I know this is an old thread but maybe some of you are still out there suffering. I am 65 was diagnosed with Hashi in 2009 though the endo said that I had had it some time as if I didn’t know that with all the symptoms I had been getting. Well after starting the medication I didn’t feel much better at all, even though my meds were ok, but I persevered with it as it was all I had, in January 2012 I started to get intestinal symptomas as described by quite a few on this blog, suffice to say symptoms similar to IBS.
Desperate and with no faith in the endos, (I have seen five different ones since 2009), I read up all that I could and found that eating a GLUTEN FREE DIET was recommended for IBS and also for Hashi sufferers. So gave up gluten there and then for trial period, after just 3 days I felt so much better, it was like magic I actually felt myself again after so many years of struggling, living on my willpower as someone aptly described it, I now had more energy, and was less tired, pains and aches disappeared.
Needless to say I have been gluten free ever since. I haven’t seen the gluten-free diet mentioned here, maybe it could help you and others and it’s so easy to give it a trial so please consider it. I still take the syntheroid 75-100 but if I accidentally eat gluten I feel so awful. Another thing, I have only had one migraine since gluten-free, before I had 3-4 really serious ones a month since I was 11 years old.

Louise, I take Armour Thyroid. I take 60 mg (1 grain) in the a.m. Or a little less since I lost weight and then I take 30 mg (1/2 a pill) at dinner time with food and it has been good. I take vitamins at lunch time. I take Vitamin D at 10 am and B Complex after that. Zinc makes it work well.

Louise, I take Armour Thyroid. I take 60 mg (1 grain) in the a.m. Or a little less since I lost weight and then I take 30 mg (1/2 a pill) at dinner time with food and it has been good. I take vitamins at lunch time. I take Vitamin D at 10 am and B Complex after that. Zinc makes it work well.

I have suffered those same symptoms and am on here looking for answers. The best answer I have found to curing the dry hair, brittle nails, and dry skin is taking Biotin. I am actually on a full regimen of vitamins that, I think, has prevented me from gaining weight but despite all my efforts I am stagnate at my current weight of 175lbs. The accumulation of information on various websites has brought my regimen up as follows: Omega-3-6-9 and Thyroid complex which puts together Folic Acid, Iodine, Zinc, Selenium, and L-Tyrosine that I was originally taking all separately. These vitamins are suppose to help eliminate mood swings, increase digestion, and support immune health; all of which are compromised in hypothyroidism. Hope this information helps.

Hello, I posted the other day about my TSH level being 0.037 and now eight days later its up to 27.034. Does anyone have any idea what could possibly be going on? I feel horrible and the panic attacks are still happening but it seems to be only in the evening and they last for 4 or more hours. I can’t stand the feeling. Of my heart racing and it scares me, I am so afraid something is wrong with my heart, I have chest pains odd pains everywhere. But having never experienced panic attacks before 3 weeks ago. I don’t actually know if what I’m feeling is panic attacks or something wrong with my heart, can someone please help me with this………

That would scare me to death also. I’ll pray for you KM. I’d tell the Endo it’s an emergency and try to get in earlier.
I took .25 Levotyhroxine because my TSH was .11 and it made me feel like I drank 500 pots of coffee. I already take a Beta Blocker so my heart rate didn’t go up but I could tell my BP was really high. I took half of it the next day and felt a little better but still speedy. So much so I didn’t take it on the 3rd day and haven’t. The Dr. told me to not take it and come back in 3 months. My symptoms aren’t bad enough to need medication.
I think we all need to be very careful about our symptoms and the medication for Thyroid. I’ve read lots of comments from people that say they have symptoms and the test came back normal. If my Thyroid came back normal I wouldn’t push taking this drug.

I have had hypothyroid for 11 years now and seen many doctors for it. My TSH has never been normal and the lowest it’s ever been is in the teen’s. my dosage of synthroid has been 224mcg for quite awhile now, well 2 weeks ago I woke up and had horrible chest pain and rapid heart rate (186) my husband called the paramedics and they began treating me for a heart attack, I honestly thought I was going to die, I’m only 36 and I thought it was the end. After tests in the emergency room my TSH levels showed 0.037.
I had bloodwork 2 months before and was 20.89. I am now on heart medication to keep my pulse and pressure down and also Xanax because I am now having severe panic attacks. Has this happened to anyone else? And if so how long does it take for the TSH to rise? My primary doctor took me off synthroid all together now and since my insurance changed, I have to see an new endo and he can’t see me til May 1st. I don’t think I can take the panic attacks and chest pain until then. Anyone that can give me any advice would be greatly appreciated. Thank you all in advance.

After 10 years of fighting the Doctors about not taking a thyroid medication because I was sub-clinical my TSH was below 10 and no symptoms. I went and was tested again and my TSH was 11. I thought and so did the Doctor time for medication. I am not really having symptoms still. I gave in and was prescribed Levothyroxin .25. It was horrible. I was nervous all day, my body was tense, my eye’s felt like they were bulging out of my head, I couldn’t talk, eat, or sleep. My BP was through the roof. I didn’t take my BOP but I felt it and my ears were screaming. The next day I took half. Same symptoms just not as BAD. I stopped taking it.
The following week I went to the Dr. I told her my symptoms and she told me to stay off of it and come back in 3 months to do another TSH check. I believe that I overdosed on it. Good luck getting me to take that ever again. I’m going to try a couple of radishes a day and see if my TSH doesn’t go down. I read it somewhere. I’m 55 postmenopause. 5’4″ 142lbs. I have enough hair for 5 people. I wake up at 5am and go to bed at 10 or 11. Every now and then I feel like taking a nap, Maybe 2 times a month. Dr need to check symptoms along with numbers. This is by far the most confusing health problem I’ve ever tried to read about. Everyone is different.

The top of the normal levels of thyroid are not what you want. TSH normal range is 0.3-3.0 and to have optimal treatment to feel good for most persons a low reading on this is the best. The ranges are different for some hospitals and clinics whom are out of the loop and not updated.
A high TSH means you are low in hormones and low TSH may indicate you are high and need a decrease in medication. But again, most persons feel best at a low TSH on the range of universal standards.
The Free T3 and Free T4s’ are more important to look at, and most feel best at a mid to upper range on these. They all need to be looked at. All too often doctors only go by the TSH which means he or she is not updated to medical evidence.
Antigens in your body that are working against your immune system if elevated will alter a TSH and doesnt mean a thing to you to test for it. The optimal treatment would be to get the right dosage and maintain and we cannot find doctors who are willing to treat the symptoms rather than the numbers.

I had a complete thyroidectomy in July of 2009 and went through the whole shebang with radioactive iodine therapy. I have been taking synthroid since September of 2009. I have not had any adverse reactions to any other medications while taking the synthroid; although, I do not ever take anything within one hour of taking my synthroid. I, too, experienced weight gain, and would love to blame not having a thyroid, but if I were to be honest, I’d say the fault lies with me. I believe waiting one hour after taking synthroid before taking/eating anything is very important.

I have been on thyroid medicine for around 7 yrs or more, started on Synthroid then due to insurance was switched to Levoxyl. My symptoms before diagnosed was extreme fatigue, muscle pains, lots of hair loss, dry skin and depression. Within 3 days on the medicine I was starting to feel better, energy was returning and actually felt like I could get up and go. I have been off the medicine for a week now due to script ran out, going to dr tomorrow. Depression, fatigue and hurting all over have returned. I can not wait to get back on the medicine!!! I never want to be without it again!!!

About six months ago I was diagnosed with hypothyroidism and put on Armour Thyroid 60mg. After taking it for a few weeks, I started feeling better, more energetic. Then one day I had an episode of tachycardia (fast heartbeat) that put me in the hospital overnight. My thyroid levels were checked and they had changed from hypo to a more normal level. The Dr. decided to lower my dose to 30mg. Armour Thyroid. I never felt right after that… constant racing heart, terrible anxiety, too hungry or not hungry at all. Had to stop drinking coffee, which I had always had one/two cups a day, but drinking coffee an hour after taking the Armour Thyroid sent me into terrible episodes of tachycardia, anxiety.
Another trip to the ER and the Dr. has now switched me to synthroid 50mcg. I took it for a few days and seems to be better, but hair falling out. So I have stopped taking anything and will check in with my Dr. next week. Ever since I started on thyroid meds, I feel worse than before. Trips to ER, switching doses, endless blood tests. I was only mildly hypothyroid and don’t see the sense in this. The cure seems worse than the disease.
Any thoughts?

Hi guys I’ve been taking levothyroxine .25 for 6 months now…from then on I’m not normal anymore…..I’ve been feeling dizzy all the time its like the world change….I’m tired of feeling like this….the doctor wants me to continue but I’m planning not to take the med starting today for 30 days….just to check if this one is causing my dizziness…if you have any advice please….I need help….thank you

I started taking my synthroid at night just before bedtime this way it’s 4 hours either way. that would interfere with anything that slows the absorption of the synthroid.. 4 hours seems to be the time for what ever you take vitamins, coffee, orange juice, soy etc etc… I’ve been taking it for about 20 years and it’s always a freakin battle to level it…

Oh man… Robin you sound just like me. Was diagnosed tsh 5.85 and started levothyroxine (50mcg) exactly two weeks ago and for the past week, I have experienced chest tightness, rapid heart rate which sent me to a random Dr. at Kaiser (my personal Dr. is on vaca for a month.) and I was told I was only borderline hypo, so just stop my meds. He listened to my heart and then was ready to just send me on my way. I requested to at least run an EKG, which turned out normal. BUT, now I am experiencing MAJOR. stomach issues.
I am currently on a mini- vaca with my family but want nothing more but run to see someone, as I cannot eat any food, am experiencing diarrhea, light headedness, and am still experiencing the chest pain/tightness. Just wondering what happened with you and if you ever saw your Dr. If so, curious to see if you are feeling better?

Karen,
Good luck and let us know how you get on. I will help you in any way I can because when I was first diagnosed, I had very little support and no one who understood me. I just had to ride the rollercoaster. I don’t want anyone else to have to feel like they are going through it alone. If you have anymore questions or need to vent, please post again. Take care.

Thank you Erin. I will request a copy of my labs and go from there.

your post moved me so much. how are you doing now? I hope you are feeling much better. if you’re not a writer, you should be.

Robin,
How far was your thyroid off when you were last tested? The symptoms you are describing are symptoms of being over-medicated. I also get the gastrointestinal symptoms when my dose is too high. I know that you are only on 25mcg, so that is a very low dose, but maybe you could ask your doctor if you could split that in half. It might be too much for you to start off with. Keep in mind that when/if you do take a lower amount, it will take a few weeks for you to notice the over-medicated symptoms subside, but “if” that is your problem, it should take care of it. If you are only borderline hypothyroid then you just may not require much at all. Some people do not even take medication if they are borderline, but it depends on their needs and their symptoms, so it’s something you should talk to your doctor about. I hope this helps a little.

Karen,
First of all, you should at least ask them what your TSH is when they test you. I was also diagnosed with borderline hypo and so I know how hectic it can be. Some doctors make it sound like taking 1 pill will fix everything, but that’s not always the case. My TSH never went above 8, so I have never taken anything higher than 75mcg. Hair loss is actually one of the main symptoms I had when I knew that something was wrong with me. I couldn’t lose weight, was always tired, and I was afraid to wash or brush my hair because it was always coming out of my head.
While the thyroid medication is supposed to help that, the leaflet that you should get from the pharmacy will warn you that more hair loss is possible on the medication and that if it does not subside in 2 months, you need to let your doctor know. The reason for this is because some people do not do well with certain brands of medication. I actually had to try a few before I found one that I can stick with.
I started with generic levothyroxine, then the natural alternative Armour Thyroid (very bad experience for me), Synthroid, then Levoxyl, and I have found that the latter works the best for me. Also, (this is just an opinion based on my personal experiences) it sounds like there is a possibility that you could be over-medicated. Heart palpitations, headaches, and even hair loss are also associated with taking too much thyroid hormone. The way you would know if it’s too much is for the doctor to look at your Free T3 and Free T4 levels.
When I am over-medicated, my Free T4 is above range and usually I will have some gastrointestinal issues that come along, like bloating, cramps, upset stomach, etc. Everybody’s body has its own way of getting its point across to the person it belongs to. When I need more thyroid medicine, my head will itch really bad and my hair feels different and starts to come out. So a lot of times, I have to switch back and forth between 50mcg and 75mcg.
Basically, if I were you, I would request copies of my labwork, and next time you go, ask to have your Free T3/T4 tested, if something is on the high end then you may need less medicine. OR….you could just ask to try a different brand. Also, even though I have been taking medication for my thyroid, I have never truly regained all of my energy. However, I am on other medications, so that could play a role in it, but I have not felt energetic and motivated in a really long time.
You just have to do the best you can, and this is something you have to be really involved in yourself. Don’t just let the doctors send you away if you do not feel like you are getting what you need. You have the right to request a different brand and to see your lab results. Then go from there. Hang in there. I know it’s tough.
PEOPLE’S PHARMACY RESPONSE: Erin, your advice is good. Karen might also get some helpful information from Mary Shomon’s site: http://thyroid.about.com

I am not SICK AND TIRED anymore!!!
Finally after years fo listening to doctors tell me my hair loss, weight gain, depression, tiredness was in my head or because I needed MORE levothyroxine, I finally gave up on them ( I got all the way up to 200 of levo and STILL had all that sickness) and quit th elevo and started natural dessicated thyroid called Armour Thyroid.
My life changed overnight. My hair loss has stopped, I have lost 7 lbs in ten days and I feel HAPPY for the first time in years. Part of me could cry for being happy. Part of me is angry because doctors wouldnt listen to what I – and my body – was telling them. I dont care what your almanac tells you levothyroxine SHOULD do… it doesnt work!!!!! not for everyone!
I highly recommend reading Stop The Thyroid Madness or the website of the same name. It took years for me to figure this out for myself. I will never touch that synthetic manmade drug again. If our thyroid makes T1, T2, T3, T4 and Calcitonin, then there is a reason. Armour Thyroid has all of those.
Levo is a chemically created version of T4 alone. It works “in theory” but certainly not in practical terms of health and wellness. Or is feeling sick but with a lowered TSH on paper, more important than our wellbeing???
PEOPLE’S PHARMACY RESPONSE:
To get an up-to-date overview of this whole controversial topic you may want to listen to our interview with thyroid experts. You might be surprised that they don’t disagree with you.
Check out this link for interviews on Thyroid Controversies:
https://www.peoplespharmacy.com/2012/04/14/853-thyroid-controversies/

I am taking levothyroxine 25 mcb. I have severe abdominal and stomach cramps and pains everyday. I also have mild chest pain. I get a pounding heart at least once a day. I also sweat severely when that happens. I have had these symptoms for 3 weeks now. (Ever since I have starting taking the med) Is this normal? How long should I wait before I should be concerned. All symptoms make it hard to function. Before I started taking the pill I was having different, but terrible issues that made it hard to function also. What do I do?

Hello. I’m so glad I found this blog. Here is my story… At 38 I was diagnosed with borderline hypo back in 2007, and prescribed levothroyd 100mcg (I’ve also used the generic Levothyroxine). The first month or so I experienced racing heart, anxiety, sleeplessness at night, etc. My Dr. gave me Ambien to help me sleep. Eventually the symptoms subsided, however, I still felt tired throughout the day (this was the ONLY symptom that led to my hypo diagnosis). In 2009 I started to get anxiety attacks for no apparent reason (one put me in the hospital). I’ve never experienced this before and was really scared.
Since then, I still get heart palpitations, bad headaches, and vertigo. In addition, last year my hair started falling out on one side of my head. I get a handful of hair every time I wash it! Suspecting that Levothyroxine might be the culprit, I tried going off this medication in January. After 2 months, it didn’t make me feel any better, just a little more sensitive to the cold, and my hair was STILL falling out! I went back to the doctor and she told me to get back on my meds and get blood work again in a month. Apparently my blood work came back within the normal range (they didn’t share the numbers with me). SO… my symptoms or side effects continue. I feel horrible and don’t even want to get out of bed sometimes. I’m really thinking about going off the meds again and giving it some more time to see how I do. I don’t understand why I was prescribed 100 mcg when I am only borderline. Maybe I need a lower dose? Does anyone have any suggestions? Although tired, I felt so much better before I started taking this crap. I don’t know what to do (: I want to feel normal again. Thanks

Concerned Individual,
Thyroid disease and diabetes sometimes will go together as they are both endocrine disorders. There should not be any problem taking both medications, but one thing that I can say about metformin (my husband has diabetes and used to take it) is that it has the tendency to cause upset stomach, so just watch for that and if you don’t like it, there are other meds your dr. could give to you for diabetes.

tiffany, I thought the same thing. I took my meds and felt 100% better my hair had bald spots not none to be noticed and grew back quickly if your dr checks your thyroid in 3 months and it has reglated it then the most u r going to experience is thinning of the hair.. do take your medication for u will feel 100% and you will lose weight not dramatically but the weight comes of. I promise. I too am on the same medication.
good luck

I am on levothyroxine 25 mg for thyroid disease. I have recently been diagnosed with pcos and was prescribed metformin 2000mg is it safe? Will it have any kind of reaction? Please get back asap I have not started the metformin due to worrying about this matter sometimes it’s better to get a 2nd opinion. thanks

Tiffany,
I know that it is scary when first diagnosed, but what I can tell you from my own experience is that it takes a bit of experimentation with the dose and the brand to find what is right for you. You really need to self-advocate. If you don’t feel well, ask for changes in doses, or if that doesn’t eventually work over a period of months, then ask to try another brand. I would normally give a thyroid medication about 4 – 6 months to see how it affected me.
I tried about 3 or 4 different ones before I settled on Levoxyl. All of the brands have the same ingredient (levothyroxine) but believe me they do not all make you feel the same way. So, just try what your doctor has given to you to start with and go from there. As for hair loss, you are actually more likely to eventually experience hair loss if you do not begin medication and your thyroid levels continue to be out of balance.
That is one of the first signs I know when I am not getting enough medication. My hair begins to fall out. When I get on the right amount of medication, that eventually stops and it will thicken up a bit. I keep my hair short for now just in case it decides to fall out again. That way, no one will really notice. ;) I do, however, know that some people get hair loss when beginning treatment, so *if* that does happen to you (there is really no way to know unless you try it and please don’t go into it with the assumption that what you have read will definitely happen to you because you will just worry more), then try to keep in mind that it will not last forever. Again, *if* it does happen to you and is persistent for more than a month or 2, that is something you would need to tell your doctor.
However, as I said, it is probably more likely that your hair would fall out if you do not take the medication. 25mcg is a very small amount. I cannot tell you if you will have to take this forever… I have heard cases where some people were able to stop their medication, but for most people, it is a pill that will be taken everyday for life.
Diet cannot cure your problem, but it can be a great help to you. Over 40% of people who have a thyroid problem also have food allergies that they may not even be aware of. (gluten, lactose, etc) Doctors will not tell you to change your diet, but I began having other problems such as acne and stomach issues and my doctor told me to experiment with my diet. He said you may not have a true allergy, but you may have a sensitivity. As soon as I cut gluten and lactose out of my diet and started eating organic meat, I have been able to lose weight. I found it hard to lose even a pound prior to that. It also helped with my skin and stomach issues. Hope this helps some :)
Erin

Hi there,
I was just diagnosed with hypothyroidism yesterday. My doctor wants me to start on Levothyroxine 25 MCG. I’m really wanting to get started on it, but I have read so many negative reviews that it’s kind of scary. My biggest concern is the hair loss :( I’m only 22 and I’d like to get a hold of this now. Is this something I can quit taking once my diet is “thyroid” worthy? Any tips, suggestions?

Hi Andrea again,
I posted before about how I can’t lose weight, am still tired all the time and had been having problems with the urgent need to go to the restroom. I informed my Doctor of the problems I have been having and she thinks I may have Celiac disease (fancy way or saying wheat/gluten allergy). I have been on a wheat and gluten free diet for the past 2 to 3 weeks and I feel so much better. I have energy, have lost 5 pounds, I’m not having headaches and no more emergency bathroom trips. My Doctor told me that people with autoimmune hypothyroidism are more likely to have celiac disease. If your medication is not working for you ask your Doctor if there is a possibility you may have Celiac disease. You won’t be sorry.

Just been diagnosed with hypothyroidism and have started 25mgc levothyroxine, have been on them for nearly 2 weeks, have started feeling sick and have upset stomach could it be the meds and will it get better or will I have to change them? x

Cami,
It may take some time and experimenting before you are able to lose weight. I am going to tell you my personal experience… I did not lose a pound even though I took my medication and exercised. I continued to eat like I always had. I took a look at my diet (some people with thyroid conditions have food sensitivities and are unaware) and I realized that dairy and gluten were in almost everything I was eating. I had suffered from bloating and other stomach issues for awhile and then my doctor said maybe you need to take a look at your diet.
I started to eat organic meat, fresh fruit, veggies, and gluten and dairy free items and I have lost some weight. I had horrible acne and even that has gotten a bit better too. Sometimes we do not even think that what we eat could be a factor in our health, but I say it’s worth a try, if you haven’t tried it already. It won’t hurt. ;)

I have been taking levothyroxine for months now. My dr said I will start losing weight but I have not I exercise and eat healthy. I want to know when you start losing weight. I am so frustrated I’m having high tsh levels and now they are normal with the meds it no weight loss even hcg can’t help.

Katie,
I am 26 years old and I was diagnosed with borderline hypothyroidism a year ago. I also have not gotten my energy back, but it might be because I take medication for anxiety. Do you take any other medication besides levothyroxine? Sometimes, other medications have fatigue as side effects. I just feel like I can’t get motivated. I wake up feeling tired, when I have not done anything to be tired about.
I am very frustrated with it, but I figure I am doing the best I can… I am taking my medications and I am trying to eat healthy and I exercise. I just can’t get the energy to return. Some doctors think that I am depressed when I say I have no motivation, but I’m not. I want to do things, but I can’t. The drive and willpower is not there. I find it hard to do things like clean my house.
I do not know what to tell you, other than to keep pushing forward and don’t give up. Keep taking your medication and talk to your doctor about how you feel. Just do the best you can. That’s all any of us can do.

Diane C. I believe if the medication makes you have those reactions maybe it is time for you to try homeopathic remedies, I am on 150 mcg I don’t believe they will work for me but I do know there are things that help a sluggish thyroid I don’t think you should do this on your own it should be monitored by a dr homeopathic person and they can give you specific things to take and what dosages. I know that kelp increases your thyroid functions and also coconut oil. Anyway it is just an idea and it may even help with your anxiety not to mention I am sure the would be great not to have you leg seizures. I really hope this helps you. Best wishes and good luck!

I see the comments that people have made saying that they have gained weight while taking levothyroxine, my cousin has also gained weight but I lost like 10 lbs. I am 24 years old and am hypothyroid & weighed 110lbs and am now down to 100lbs. I am always still so tiered and have been taking my levothyroxine for about 5-6 months now. If anyone has any info on how to get rid of this fatigue, please let me know. I’m so sick of always being tiered and sleeping my life away! -Thanx- ~Katie~

I am a 63 yr old female. I work every day in an office. I am sitting here tonight trying to type with uncontrollable jumping legs. Two years of Levothyroxine 75 mcg has brought me to my knees…
It has caused my legs to seizure uncontrollably. They are stiff and ache. I take Requip XL and Ropinirol to help live with the seizing and restless leg but it does not control it. I have not slept in years (with a CPAP). I could not take it anymore and stopped the Levothyroxine for 21 days in January.
I felt better than I have felt in years for only 10 to 14 days. No seizing and I actually was able to sleep. Then the weakness, brain fog and all the other hypothyroid symptoms returned. I have been on a half pill each day for 1 week… and the seizures and discomfort are progressing each day… I saw an Endocrinologist yesterday for the first time. He wants me to continue the ½ for 5 weeks and do more blood test.
Don’t know if these legs can make it 5 more weeks. Is there anyone who has had these or similar symptoms with the Levothyroxine and/or has a solution to this living nightmare?

Rosemary R,
First of all, thanks a lot for taking the time to read my post.
I have been taking brand-name Levoxyl for almost a month now and I have had a different experience with it than with the synthroid. I have read in all my research that some brands can give different results even at the same dose as the previous one, and this is true for me. My TSH never dropped below 2 the whole 5 months I was on Synthroid, but after a few weeks on Levoxyl, it dropped to 1.6. The only downside to that is that it sent my Free T4 over the limit, so I had to cut back on it and now I just take 50mcg everyday. The only complaint I have with levoxyl is that it dissolves too fast! I have to put a little water in my mouth and then toss the pill in and try to swallow it before it dissolves. I have never had a pill like that before. So weird. lol
I have seen 2 endocrinologists and I asked the first one about adrenals, but that went right over her head. She never checked them, even at my request. She didn’t see a need to. Unfortunately, as soon as they see that I take anxiety medication, they treat me differently. They want to attribute everything to the anxiety, instead of really looking into the thyroid thing–the reason I am paying to see them!!! It really makes me want to not tell them that I take the medication and maybe they would take me a bit more seriously. She did check antibodies though, and I tested negative. I do not have a goiter either. What I have is a sluggish thyroid and I am assuming there are some other people out there who, like me, do not know the cause. Honestly, it is scary not knowing. But, I get told that ‘it just happens sometimes’.
I believe that my primary care doctor checked some of my hormones because he told me about the cream, but he of course tested first (I am going to have to ask for a copy of those results) and they came back as normal, so I was told. He did mention testosterone, but he said the blood test for it was not very accurate. Apparently blood tests are not always accurate for a lot of things. People can get false positives and false negatives and even when things are within the lab’s ‘normal’ range you can still feel like crap… so who knows??
I even asked him about adrenals, but I don’t think he was thinking that was my problem. He was talking about Addison’s Disease and saying if I had it, it would be in the early stages. (Exactly, that is why I keep asking people! I want to know, so I can fix it NOW!) But I am not sure if he has the ability to administer that test. It is a very small family practice. Can they check via a blood test? I might ask him to check my cortisol when I go back in a couple of weeks. He is a pretty flexible guy. I have always wondered about the adrenals, and I would feel a lot better if I could know if they are doing ok or not. At my request, I don’t see why a doctor would not do this, but I guess they have their reasons. All I can do is ask and see. I also want to know about my vitamins as well. I like to have them checked from time to time and it has been awhile.
I think I get on my doctor’s nerves because I will write down a list of questions and tests that I would like done… but that does not always mean I get a definitive answer or that the tests I want run are given to me. In the end, they do what they think is best and you just have to go along with it for that moment and gradually keep chipping away at them til they do more.
My stomach issues are getting better since decreasing my dose. I am starting to eat organic meat and lots of veggies, and for a little while I am going to eliminate sugar from my diet to kind of cleanse everything and see how that does.
Thanks for replying to my post. May I ask what your thyroid problem is? I really wish there was a support group or something in my area. It would help if people had others to talk to. That is why there are so many of us looking for help online. It can be a very lonely disease to have. If people have no family or friends who suffer from it, that makes it even more challenging. Sometimes, I feel like no one knows what I am talking about, even some of the doctors.

Hi,
What I believe they mean (maybe you should ask your Dr. next time so he/she can clarify specifically) is that you should not take multivitamins or single-supplements such as a calcium vitamin, iron vitamin, etc. anything you can buy in the vitamin section, until at least 4 hours after taking the medication. It can possible interfere with the absorption.
What I would do is not drink milk until around lunchtime because it contains a lot of calcium. Obviously, you will get small amounts of vitamins in your food, which is okay, (otherwise your doctor would be telling you to change your diet, but you shouldn’t have to change it much as long as you don’t have any other sort of health problem) but you don’t want to take any sort of vitamins and try to avoid things with soy in it too. Soy is in a lot of food, so yes you will probably get some in minute amounts, but just don’t go overboard and drink soy milk and stuff like that because it can also interfere with the medication.
The best thing to do (in my opinion) is wait until the afternoon, at least lunch time if you take your thyroid pill first thing in the morning, before taking any supplements. That would allow your body time to absorb the thyroid medication (which supposedly happens within 4 hours of taking it) without any interferences. Some people take their supplements at night time.
So what I did was I switched lunch with breakfast… I would eat my lunch food an hour or so after taking my pill and then at lunchtime I would have my breakfast food with milk. As far as the protein powder, it depends on what is in that. If there are a lot of extra vitamins added to that, I would say hold off on that until later in the day. But like I said, you might want to ask your doctor to be sure on that one. I know that I was told I could drink herbal tea as long as it was not at the same time as my thyroid pill. Hope this helps.
Erin

Can Synthroid cause false positive home pregnancy result? I’m on this since about 6-7 months (100mg since 2 months) and I made a pregnancy test this morning and it was positive… Don’t know if I should be happy or it might be the synthroid… Please help?

I have been on Levothyroxine now for 2 1/2 years. Over this time, my dosage has been slowly upped every 6 months or so. I have been waiting the recommended 30 minutes after taking my pill to have my coffee. I have waited another 30 minutes or so after that to eat my breakfast. I have recently read that you can not take anything with iron, calcium in it. I have been taking my coffee with protein powder every day now and did not realize this was not allowed. I was told not to take pills within 4 hours of taking my medicine. Can someone please clarify this for me?
I also read that taking certain protein powders are not recommended when on thyroid medications. Is this correct? What about supplements? What are they referring to when they say supplements?

Hey hope you have resolved the problem but if not, I have found that oatmeal helps move the poo because it is an insoluable fiber. When I was having my most difficult time that was the answer, so you may look at the oatmeal as the reason for you loose poo thought since. Just all else is going well for you. Rose

Just looked up Desiccated Armour Thyroid since I was considering switching back to it for the Added T1 and T2 plus calcium absorb benf. and noticed that it is called porcine mix which is of pig and cow.
Well, I had the internet back in 2002 and I don’t remember anything of a blend, in fact I was alittle worried about mad cow and remember only reading that it was from New Zealand cows with strick regulations. My aunt and uncle had been on it for 20 yrs with no problems so I gave it a try in for 1 yr..
My Dr later found by taking me off and only doing Sythroid that I had a conversion problem,(revealed by a low T3 about 6 mths into my Sythroid dose. I was then put on Cytomel. At the time I was such a mess that even though I wanted to change back to Armour, it wouldn’t have worked as I needed T3
Since balancing on 100 mcg of Sythroid and 10 mcg of Cytomel twice a day, I’ve made a out of state move and 3 Drs later, with each one of them tring to lower my dose according to a low TSH result (.003), even though I would tell them I haven’t had A TSH since 2003. So they took me off the Cytomel completely and the Synthoid went from 100 to 75!
At first it wasn’t too bad. I coped at 88 mcg Sythoid with 5 mcg Cytomel 2*day. But the 75 mcg and no Cytomel, was a killer. Bone pain, shinn splints just from lying in bed. I could only eat watermellon and oat meal w/o milk. I was falling out of the car and falling tring to dress myself, Headaches, plus 35 lbs, couldn’t poop, no matter what help aid I took, red and orange color on both sides of my neck (but not the center), cold to the point of sitting in my car and turning on the seat heater just to get the chill deep in my bones out!!!! I now know the what cold to the bone feels like. I would take 3 to 4 hot baths a day, I would sleep with heating pad, I would bring old blood labs in showing that I had a low T3 test and even would ask my New Dr if he would have started me on Cytomel with that test AND gotta YES, but he still would not increase my medication. I even would bring my Husband to my drs appt. to speak on my behalf because of my confussed state of forgetfulness and I needed someone thinking of ME, and still nothing would change.
I finally, out of fear of dying called the old, out of state, drs office and reqested to be reinstated as a patient. Bad news it had been 3 yrs and the first available was 5mths away. I made the appt. and WAITed, and I went to it. I thought I was going to have to do a big convincing plea for meds (as I was use to doing and only to be reduced again), not the case. My Dr reinstated all of my meds at once, that means from 75 mcg Sythroid to 100 and 0 mcg Cytomel to 20 and said I don’t know why they have messed with my prescription! God was with me that day, as I thought I would die soon.
It has been a long journey for me, 7 mths later I am slowly recovering and getting stronger. All symptoms have gone but muscle strenght is slower to come back. Even the red orange neck is slight now. I had alot of cell damage on the internal level and that I find it hard to forgive. All my Vitamins are up along with iron, as everything went low no matter how many vitamin pills I took. Life is getting better but it did cost me alot of money and ill health. Hopefully it will all get better. I guess with every loss there is a gain, of which I now know there are many more tests than what they usually run, I don’t think loss of health and life is a fair trade off for gaining an medical education! Rose

On the information given to me ( from CVS) with my Cytomel T3 prescription, it states that: “This medication is also used to lower thyroid function in certain diseases such as enlarged thyroid gland (goiter) and Hashimoto’s thyroiditis.” So my post about getting that Thyroglobulin, Qn (the amount of hormone your own thyroid is putting out) is important as to calculate the amount of Cytomel T3 you need to treat your Hashimoto’s auto immune disease. Educating your Dr’s seem to be our job, as I had to take the paper into mine and show him. Rose

Good research on veggies and soy, but also add peaches and carbonated drinks and chlorinated, florinated water. Maybe wheat and milk, but test first or your giving up nutrition. I feel sooo bad for all thyroid victims, even me!!!!

Just read your blog and my guess is your anxiety med is making you resistant to the name brands out there. Also high cortisol levels do the same, have dr ck adrenal functions, and do Thyroid Antibody tests (all three kinds, TPOab, Tgab, TRab), a Reverse T3 and a Thyrogloulin Qn. You still probably need to find a Metabolic Healthcare provider trained with a master degree, to make sense of it. Might want to find a Metabolic healthcare professional vs these others anyway.
I posted a comment that might help. Also balancing you Estrogen and Progesterone and Testosterone for any hypo-thyroid person is important, no matter what your age. But only balance with bio-identicals creams. Chances are your other vitamins and minerals are out as well because of the state the body is in. Prob not a bad idea for a B12, vit. D, K, A , and iron tests also.
Talk with a small run health store about nutritional help and medical help practitioners in the area. If the thyroid situation is liveable than the mother issue will be more tolerated or resolved (who knows). Good luck. Rose

For anyone, or a parent of a child suffering from a condition of the THYROID, (as there are many kinds), I recommend the following books that will give you the answers you need to all of these questions I’ve just read. And I suggest seeing a metabolic specialist with a master in Metabolic Medicine & Nutrition that works under a MD. “The Iodine Cure”, or “Iodine: Why You Need It” by David Brownstein, MD and “What You Must Know About Women’s Hormones” (and by the way it’s good reading for men, too), by Pamela Wartian Smith, MD,MPH.
I am a sufferer for 12 yrs and I have not had a TSH for 11 of those yrs. Relocation moves and changes of doctors all have been challenge to say the least. They do tend to look at numbers only, but as these books will reveal to you there are many, many more thyroid test than most know about, (TSH, T4, T3, Free T4, Free T3, Reverse T3, Thyroid Peroxidase Antibody TPOab, Thyroglobilin antibody Tgab, Thyrogolobulin Qn (that tells you how much T4 your thyroid is producing) and even a TSH receptor antibody TRab (meaning your TSH may not be reading correctly because of an antibody).
NO ONE should begin or continue thyroid treatment without all tests above ran first, otherwise your Doc is guessing. That is my opinion after 12 yrs! It only makes sense to to know what you have first than to go about shooting in the dark. These Tests are expensive and insurance will want to slap the hand of the DOC that orders all of them so, be prepare to pay if you have to to get your way, no cost is too high for your health and treating your condition properly, without proper treatment you lose, not them.
As you will find in the reading above, there are soooo many more issues going on than just a TSH reading and controlling your Thyroid. There will be so many other test besides thyroid tests that will show you where your balance needs to be, and so many other options, so talk options to your Doc too, like Name Brand, Synthroid T4 and Cytomel T4 and Armor Naturals derived from New Zealand cows (safe). Keep all labs from the time your diagnosed, as they will be helpful later when Drs change, questions arise, and for you to make sense of YOU. And pls read the books. I wish I had when I was diagnosed, I now realize how miss treated I was without all the tests.
People’s Pharmacy response: We’d like to add to your reading list. We are enthusiastic about Mary Shomon’s new book, The Thyroid Diet Revolution, which is about lots more than diet. You can also find her advice online at
http://www.thyroid-info.com/

I started on levothroid 20 years ago this year. Had part of my thyroid removed because of a large cyst. About five years ago started having heart palpitations, had lots of heart tests done and they came back OK. In 2009 had a bad tachycardia episode so cut the levo from 100 mg to 50. Felt good for a while. Last year the heart palpitations started coming back, mentioned it to my pcp and he kind of blew it off.
The palps got worse, developed a small tremor in my left hand etc. Complained again a month ago, the pcp had me wear a heart halter monitor for 24 hours. I decided on my own to cut my levo dose in half, my tsh said .44 The cardiologist said the halter monitor showed 16 episodes of tachycardia and lots of palps, did a treadmill which said I was OK. He thought it OK to cut levo in half, and I will see an endo in a couple weeks.
Since my symptoms have not improved I just quit taking the levo two days ago. Finally got some sleep last night! Still have some palps but not as much, will see how I do without any meds . . .

*P.S.
Andrea S:
Maybe you could ask your doctor about doing alternate dosing like 50mcg every other day and 75mcg every other day… that way “if” you are getting too much, you can decrease it that way, so as not to be a very drastic change… but maybe enough to stop the upset stomach.
Also, I did not want to discourage you from trying to change your diet. Everybody needs to eat healthy and these days, there is so much processed food with all kinds of extra ingredients and you very well may benefit from cutting out some things from your diet. Personally, I just want to give it a try. I am interested in seeing if it makes me feel better, too.
If you are going to eliminate gluten, stay away from anything with wheat, barley, rye, triticale, and malt vinegar in it. Read the labels very carefully. Make sure you get plenty of water and if you eat meat, make sure it’s not processed, battered or breaded. Eggs, fresh fruits and fresh veggies are okay to eat. Some things specifically say on the packaging that they are gluten free, but always double check the ingredients anyway.
Sometimes, people go dairy free and gluten free at the same time. I see that you are lactose intolerant, so you probably already know what things to avoid in that area. It sounds like you may have a fish allergy as well, so when reading labels you will have to look for traces of gluten, milk and fish. Basically what you will need will not be in the freezer section of the grocery store anymore. It will be in the meat and produce section. Wal-Mart has a small gluten-free section in it with snacks, flour, noodles, quinoa, hot cereal, cake mixes, crackers, etc. Some of them are not only gluten free, but dairy free as well. Woo-hoo! :) You can eat most beans that when purchased are dry and come in a bag because they are naturally gluten free, since nothing is added to them. (I still double-check though). Cook with olive oil. If you have a Whole Foods store in your area, you will probably find more choices there.
If you are still not feeling completely well if your thyroid is under control, then I say you have nothing to lose from changing your diet. If it helps, then you will have gained something. :) I am going to pursue the gluten free diet, even though it has not been determined that I am truly gluten intolerant. Keep in mind that I have not had those tests. If your thyroid medication is not too high for you, then it’s possible there is another cause for your discomfort and I would pursue it if I were you until I got the answer. But, I was just trying to think simple first. I can tell you from personal experience that getting even just a little too much medication can cause things to happen that don’t usually happen. It’s your body, so you are the best judge of what is normal and what’s not. Sorry for rambling on. I hope you feel better soon. :)

Andrea S,
When I read what you posted, I almost thought it was something that I had written. I hope that what I say to you will help you in some way. I have gone through the same thing, not once, but twice… the 2nd time being something I am going through right now and have been for several weeks. Before you get scared that you have a food allergy or some other disease (worrying will not make you feel any better, but I know it’s hard not to be concerned about it), I would suggest for you to go to your doctor and have your thyroid levels checked– especially Free T4.
That is the amount of thyroid hormone you actually have available in your body, and even when your TSH is within a ‘normal’ range (so you and your doctor might think all is well), take a closer look at your Free T4. You might be on the high end, maybe even slightly above the limit for it. If you have even a little too much, you could begin to experience some hypER symptoms, one of those being diarrhea.
This happened to me when I was taking 50mcg of levothyroxine last year, and it carried on for 2 months. I had diarrhea, especially in the morning or after I had eaten, intestinal spasms, bloating, cramps, etc. Doctors thought that I had some sort of infection or either IBS. I knew something was not right. Eventually, I began to get nervous and I realized I was going hypER. I had to stop taking my medication (don’t do this… I only did it because I was uneducated and didn’t know what else to do since no one would change my dose), but after I had been off the levothyroxine, my intestinal issues got better. A few weeks ago I switched from Synthroid to Levoxyl because after 5 months on Synthroid and several increases, I felt awful and my tsh was not coming down very much. I could tell Levoxyl was a bit more potent for me, but I did not think I was going hypER yet, since the anxiety had not showed up.
I began to have gastro issues and started thinking I was lactose/gluten intolerant, got intestinal cramping, bloating, and spasms, loud noises, and I started being very scared to eat anything. I went to the doctor and he said he was not sure if it was directly caused by the thyroid stuff or if it was just a coincidence, but he ran some tests. I just got my letter today saying that it appears I am getting too much thyroid medicine and that it could be the cause of my g.i. issues. While my TSH was within range, my free T4 was over the limit.
If you are getting too much medication, you may not realize you are going hypER. It happens gradually, but you will notice something happening that normally does not happen, which in your case (and mine) seems to be diarrhea. So before you submit to going to a gastro doctor and probably enduring in a lot of uncomfortable tests and before you start fearing everything you eat, get your thyroid levels checked, and if your free t4 is on the high end, ask your doctor about lowering your dose just a little, and that may alleviate your gastro symptoms.
[Medical Conditions:]
Subclinical/Borderline Hypothyroidism diagnosed 1 year ago,
Anxiety diagnosed 7 years ago
[Current Meds:]
Levoxyl 50mcg mon, weds, fri, sun & Levoxyl 75mcg tues, thurs, sat,
{1/2} 0.5mg klonopin in a.m., 0.5mg klonopin in p.m.,
25mg trazodone before bed
[Recent Labs:]
TSH: 1.630 (0.450-4.500 uIU/mL)
Free T4: 1.86 (0.82-1.77 ng/dL

I have been taking Levothyroxine for about 2 years my gyno put me on it after having blood tests to test for diabetes etc. I had gained about 50 pounds in 2 years before the test and was constantly tired would sleep 10-12 hours and still feel tired. My blood test came back with 6.7 TSH so she started me on Levo. Over the last 2 years my dose increased from 25 to 75 that I’m on now.
I feel great, have energy and don’t just want to stay home all the time even though I haven’t lost any weight at least the gaining has stopped. The only thing is that for the last 1-2 months I have had diarrhea after lunch. I take my levo at 5:30 am and wait at least an hour and then usually eat oatmeal and feel fine. I have lunch and almost immediately after have to run to the bathroom, at dinner I normally have no problems. This is happening daily.
My Mom has IBS and I really hope the diarrhea is connected to the Levo. Also I can eat broccoli, spinach, cauliflower with no problems at night. I am allergic to codiene, fish oil, tuna, calamari, calcium pills and am lactose intolerant I also take generic zyrtec daily for allergies.
Could I be having an allergic reaction to the Levo even though my energy level and everything else feels fine? I have read a little bit that celiac disease can be found with hypothyroidism and it causes problems with wheats, I usually have sandwiches, burgers for lunch. I haven’t informed my Doctor of the problem yet but it seems weird that it’s happening almost always after lunch. Does anyone have any thoughts ideas of what I could try?
People’s Pharmacy response: Diarrhea is sometimes a side effect of too high a dose of levothyroxine. It does seem odd that it is occurring only after lunch, however. Please do check with your physician.

I have been on levothyroxin for over 10 years.
A couple of weeks ago I had blood work done and it said everything was out of wack. I read somewhere that this medicine increases your blood sugar. Is that true? I have no diabetes in my family, but have trouble since I’ve been on this med.
My Dr. raised my dose from 100mcg to 125 mcg, I feel terrible. I’m tired since started taking it. I don’t even feel like eating. I took a 2 1/2 hour nap and I woke up freezing. I finally got warm now, but I feel terrible. My bones are aching and I felt like I was getting the flu.
I WAS FEELING GOOD BEFORE HE CHANGED IT TO A HIGHER DOSE. iT SEEMS WHEN STUFF IS WORKING OR YOU FEEL GOOD THEY TELL YOU THINGS ARE MESSED UP. tHEN THEY CHANGE THINGS AND MAKE YOU FEEL BAD.
WHAT SHOULD i DO? I WAS WONDERING ABOUT THE NATURAL STUFF.
People’s Pharmacy response: Levothyroxine does not raise blood sugar or increase the risk of diabetes, but these auto-immune diseases may occur together pretty frequently. The symptoms you describe sound like your drug is still not working well enough, despite the higher dose. We’re sending you our Guide to Thyroid Hormones for a lot more information than we can put in this post, including information about desiccated thyroid hormone (the natural alternative).

Hi everyone, it’s me…again. ;) I just wanted to ask for some opinions and update on my experience with Synthroid. I started taking brand-name only Synthroid in September at the lowest dose…25mcg, and while I kept getting reports from the doctor saying that it was ‘perfect’ or ‘fine’ or ‘normal’, I have felt absolutely nothing from this medication.
I am not saying that it’s not doing SOMETHING, because I think my hair loss has finally slowed down, but only after I asked for increases. My periods are also lighter now too. However, I still feel very tired, sleepy, and unmotivated. I increased to 37.5mcg, again was told that my levels were ‘normal’…despite the fact that I have yet to break the 2.0 TSH mark, and I keep telling the doctor(s) that I feel best when it’s at least a 1.4.
I went to an endocrinologist (2nd one I’ve seen) for a 6-month follow-up (I normally see my regular doctor for this because he listens to me much better than the specialists) and really the only thing I got from the endocrinologist was a lecture on what I need to do with my personal life (I made the mistake of seeing my mother’s endocrinologist and my mother & I do not have the best relationship, so she apparently filled in the doctor about me before I had a chance to say anything for myself…) so when I met the lady, she kept plowing over my words, wouldn’t let me speak much, just rambled in my face while doing the neck exam telling me that I need to go to school or this or that..mind you I am 26 years old and married and I went to college, but she never gave me a chance to say it…and the bottom line is that it was none of her business. That’s not what I was there for. I was there for treatment of hypothyroidism and that is what I wanted her to focus on. It’s almost like she did not believe how bad I have been feeling for the past 2 years. Not to mention, I am so sick of specialists telling me that they don’t deal with ‘psychological’ disorders…they assume that I am depressed just because I take anxiety medication, klonopin (have had anxiety for years, at least since I was 19 or 20) and it’s like whatever I say goes right over their heads after that. The only good thing she said was that she agrees I should be treated because I have so many of the symptoms. So, she gave me samples of Synthroid 50mcg & 75mcg and told me on Tues, Thurs & Sat to take 75mcg and on Mon, Weds, Fri & Sun, to take 50mcg.
She said Synthroid is what is supposed to be the ‘best’ or ‘top of the line’, which is what a lot of people have told me and that is why I asked my PCP to let me have brand-name only back in September, which to be honest I am regretting. I have seen absolutely no evidence why the brand-name is so ‘wonderful’. Maybe for some people, but not for me. I feel absolutely nothing whatsoever from the increases (and it has been several weeks since my last increase), but from day 1 of taking Synthroid, I just have not felt that ‘kick’ that I have been waiting for. I swear they could probably give me 200mcg and I would not feel it. I can only assume the reason that I have not felt better is because my TSH seems to be stuck at 2.3/2.4 The specialist said she likes to keep people between 1 and 2.5. My last test result on December 23 said that my TSH was a 2.4, so it’s about the same as the test before that. It’s almost like the Sythroid is not bringing it down.
I have lab results from March of last year with the number 1.4 highlighted because that is the last time I remember feeling good (I was on generic levothyroxine at the time). I go back to my PCP on Monday & I think it’s time to start talking about switching to something else because I have heard that you can feel so much better on a different brand. I have tried 3 different ones in the past year. Generic levothyroxine, Armor Thyroid & Brand-Name Synthroid. I had a different experience on each of these medicines. None of them work the same.
I should have probably stayed on the generic, but 50mcg eventually made me go HYPER, and unfortunately I had no one to adjust my dose at the time because my doctor was out of work and none of the fill-ins would change my medication. They did not even do blood work on me during the time when I was sick from being HYPER, so I have no number from which to say hey, I don’t need to drop below this. All I know to do is to demand my PCP to change my brand and do whatever it takes to get my TSH down to a 1.5 or so. Otherwise, I will keep getting calls saying that everything is ‘normal’ and I will be feeling like crap.
I love my PCP, and even though he does not fully understand thyroid issues because that’s not his specialty, I would rather stick with him than an endocrinologist because he does not judge me unfairly and he sees the bigger picture and allows me to say what I need to say, instead of making me feel like I’m a total nut job. Specialists are more expensive and I have to drive further, and I am not willing to do that anymore only to be criticized.
And by the way, my free t3/t4 were checked and I was also told that they were ‘normal’ as well. So what I’ve got is a supposed ‘normal’ FT3/FT4, a TSH of 2.4, a jagged dosing schedule of Synthroid thanks to the specialist, and STILL feeling tired/lazy/unmotivated & on top of that….FRUSTRATED, and for good reason. Can anyone tell me if they have felt this way on Synthroid and if you switched to another brand, did you feel better and ever eventually get some energy back? Or do I just need an even higher increase of the Synthroid? I just thought that I should have been feeling better than this since it has been almost 5 months and I have increased several times and to no avail. Thanks.
Erin

well Will, I just know I feel absolutely awful without my thyroid meds. Can’t seem to do without them.

My name is Annie — and I am just getting off my third treatment of levothyroxine. The first time [in December 2011] I got put on 100 mcg. Within a few days I started getting dizzy and had falling down problems. The heart palpitations which I had acquired from being on nature-throid [which is the same as armour thyroid, it just doesn’t have corn fillers in it] came back. So, since I am already partially disabled with knee problems, I called my doctor, they told me to stop taking the levo for a few days, and then I started on 50 mcg. By the third day, I had the same problems. Plus, in addition to the heart palps, there was chronic anxiety, irritation, insomnia, the jitters, sweating, plus it triggered my rosacea, even ocular rosacea.
So, I went off that and was prescribed 12.5 mcg of levo. by day 3 all of the above problems have come back. I just made an appointment to see a heart specialist, since my mother died of heart failure while she was on thyroid medication. I do not want to be like my mother in that regard.
My recommendation for anyone with thyroid problems – do LOTS of online research. Soy products, for example, will suppress thyroid function, so for those people who love soy, it needs to be eliminated from the diet. Ditto for the goitronous [sp] vegetables like broccoli, cabbage, cauliflower, kale, mustard greens and spinach [just to name a few].
Re: diet — it’s a whole new world out there when the thyroid starts having problems.
Good luck to all.
levothyroxine and synthroid are the same — it’s just the fillers that are different. I’m even on what is supposed to be a hypoallergenic form of levo and I’m still having many problems.
Fortunately I also go to a naturopath and I have natural treatments for the anxiety.

I agree with you Alf, ever since taking the meds, although there was a slight improvement in the beginning, years later I still have worse levels than before I took it, feel awful, tired, depressed, hair falling out, and massive weight gain despite exercise and diet. And I didn’t have half these issues before taking Levothyroxine. I stopped 3 weeks ago and don’t feel any different. Would love to know how you all get on.

Liz, what brand of levothyroxine are you taking? Is it generic?? I had a hard time falling asleep when I took that too, and I take 25mg of trazodone before bed to help me sleep. I no longer take the generic, but take brand name synthroid and I have had acne as well, although I think its gotten better as my dose increases. I had acne on the edge of my face and under my chin. However, I’ve always seemed to have some acne anyway. You could ask your doctor for something topical, like cleocin, which is an antibiotic, clindamycin, and it might help your acne.
Anytime you have hormones out of whack, you will likely have some acne… so it might take awhile to see that get better. I am waiting to get my kick of energy back, but I can’t say if the fatigue is due to the thyroid issue or if its caused by other medications I take. I keep hoping that if its increased enough, I will stop feeling so tired. I don’t recommend you going without your meds, even if you don’t think its working because you will feel even worse, maybe not right away, but I went for several months with no medicine one time and over time, my thinking got slow, I got very cold, my hair was coming out, and my pulse got slow.
You probably would not notice much if you missed your meds for a day or two, but its just not going to be good in the long term if you just stop taking it for a long period of time. That’s only my opinion due to my experience, but ultimately its up to you and if you are unhappy with the lack of results from your meds, you should go back to the doctor and ask for an increase or another brand. I’ve tried 3 different ones and I can tell you that each of them were very different, so you might have to try different doses or brands and if you take any other medications they could affect how you feel too.

I took levothyroxine for 2 months and it made it hard to fall asleep but made be very tired throughout the day, also made my skin break out badly around my jaw line… I wasn’t able to make it to pick up my new scrip for this month and was worried about the side effects.

There is one thing that I want to tell you when it comes to ‘what your doctor thinks is the right dose for you.’ The determination should ultimately be made by YOU (and your doctor should just be someone to assist, monitor and guide you with that) because your body has ways of letting you know when you are getting too much or too little thyroid hormones.
Only you know how to recognize that based on how you feel. The doctor may not be aware that some of your symptoms are associated with it, but you know. You know because you have probably noticed these things for quite awhile, and you know what gets better when you take enough and what gets worse if you don’t.
If you have a good relationship with your doctor, he/she should respect what you are saying about how you feel and be willing to keep you at the dose where you felt your best.
What I did was I requested my labwork and I thought back to a time where I remember feeling good. My number was around a 1. I told my doctor that is where I felt my best, and that my recent bloodwork showed that I was just over a 2. I told him I thought I needed a little more because I did not feel as good as I would like, so he said okay I don’t have a problem with that. BUT, when they first got my labs back when it was a 2, the nurse called and said he said your bloodwork is perfect, and I felt like crap, so I was like no it’s not perfect for me, but she told me just to keep going.
So I suffered for another month, but when I spoke to my doctor in person about it, thankfully he was very flexible and willing to do what I asked. Some doctors think that your TSH number is a true reflection how you feel. They think if it’s within the lab range references, then Bam! your problem is solved. That’s not true at all.
You could be a 2 and they think well that’s not too high or too low, so it’s perfect… but you could still be having symptoms like I was, such as hair loss, heartburn, etc. The point is that you need to take enough so that most (hopefully all) of your symptoms stop.
That’s not to say don’t worry about your numbers because you don’t want your TSH to go into the (-) negative area because you could start having HYPERthyroid symptoms. I don’t know where your number is now, but it might help a lot if you take a look at your labs and pick a number where you felt your best, and point that out to your doctor.
You have to really push for what you want sometimes. It does take some time to recover from this, but I think you should be feeling better before 9 months time. I know the first few months are hard, but you should be able to tell at least a little difference. You don’t want to feel a huge shock, but it should be a subtle difference over a a month or 2.
If you feel no different after that, then I would ask the doctor to consider increasing it. It took me over a month to feel better on 25mcg… I stayed at that dose for a couple of months, still had symptoms, and finally got an increase to 37.5mcg at my request, so I’m just waiting for my hair loss to stop. I have not lost much weight either, but yet the shape of my body is different. I had gotten fat around the middle…waist, hips, and even my face looked fat. But, the scale has not really said that I’ve lost a significant amount of weight.
I usually stay around 160 pounds. I may lose a pound or gain a pound along the way. But, if your weight has stabilized, that is a good thing, even if it does not feel like it. Trust me, it’s good because before I was treated and knew what was wrong, I just kept gaining and gaining every month no matter what I did. I gained about 25 pounds in half a year, but I don’t seem to be gaining like that anymore. I just can’t say that I have lost a huge amount of weight, but I’m fine with that.
What’s most important to me is how I feel. I know I am not meant to be a size 0 and if people don’t like it, oh well. Good luck to you– I know this journey is a long and frustrating one, but don’t forget what I said. You stand up for yourself and what you expect from your thyroid treatment.

I have been on levothyroxine for nearly two years now, before I was put on the medicine I was irritated by smallest of things, depressed, always crying, couldn’t sleep, tired, lethargic, couldn’t shift weight, always
feeling cold, when I took 150mcg all my symptoms got slightly better I felt more like my normal self then I had in a long time.
Eventually they put my medication down by 25mcg and my symptoms have gotten worse again, I have had my bloods checked an Dr feels this is right dose but then why do I feel worse… it’s been over 7 months being on lower dose…. I get very anemic too, is that a side effect of this treatment?
I was told it takes nine months for the meds to kick in properly and you have to be careful when n how you take it….. I believe a change in diet might be needed to get rid of symptoms of tiredness….. but we ain’t given proper advice on this. Good luck to everyone…. I have not been able to shift a pound in over a year even if I starve myself….

Dawnmarie,
I had a bad experience with levothyroxine myself… I was taking the generic kind… not sure if you were too, but what I can tell you is that sometimes different brands are not well tolerated by some people. I had a few very good months until I got sick. I’m not sure what your symptoms of illness were, but I felt like I had the flu for over 2 months.
Another possible issue is that your dose may not have been right for you. It could have been too low or too high. In my personal experience, its best to start lower than normal because it won’t shock your body, but it does require more patience. When you start thyroid medicine, you will probably get some odd things happening to you at first, as well as when you increase, but those things should subside when your body gets used to it.
When I increase, I find it hard to sleep, but it gets better. You may wake up frequently or have weird dreams, but you will adjust. I take trazodone at night to help me sleep better though because in the past I could not stay asleep so my doctor prescribed that for me. I only need half and it works good.
Weight issues are a sign of thyroid problems. I don’t know what your tsh level was, but I know that some people can have very abnormal labs, but not many symptoms, while others can only be borderline and experience many of the symptoms. Just because you may not have noticed many symptoms to start with does not mean you don’t have a problem. Sometimes when you start treatment, you might feel worse before you feel better. You might want to just try another brand and you might not need to start off with a high dose. But please don’t ignore it if a doctor has told you that your thyroid test is abnormal. Nobody wants to hear that kind of news, but it is important. I hope you feel better soon.

I am a 52 year old woman never had a weight issues until now! I was on .88mg levothyroxine I was so ill could not understand why? until I stop taking the medication. I’m feeling better each day all my symptoms are gone except the weight gain. I was on the medication since May. I stop Nov 1, I’m sleeping much better.

My 92 year old great uncle was born without a pituitary gland. He is very short in stature but very healthy otherwise. He is currently taking hormone replacements.

Cm,
I had a similar experience when I took generic levothyroxine. Not right away, but several months after taking 50mcg. (I was put on 50mcg right away, not even titrated up from the low dose) I got so tired of my stomach issues that I cut mine I’m half, but it persisted so I stopped taking it (don’t do this- the only reason I did was because my doctor was out of work several months and none of the fill-ins would listen to me) so anyway eventually my stomach got better.
However, my thyroid did not get back to normal. It stayed borderline for several months and my hair started coming out again, so this time I’m on brand name only synthroid 25mcg. There are a couple of things that could possibly be causing your stomach issues that I’m aware of. Either that dose is too high for you and it will take time for the level of hormone in your blood to go down, or either the particular brand you are taking is not agreeing with you.
Sometimes, certain fillers in the pill can cause problems. Starting on a low dose is sometimes better because you will probably get some odd symptoms with each increase, so its good to start low as to not shock your body and you’ll get used to what to expect. My stomach issues are not as bad on the brand name synthroid, but I have not taken more than 25mcg. Having said that, I’ve not been on it long enough to get the full effect and I don’t know if I’ll be getting an increase next time or not.
I hope you feel better soon. Trust me, I’ve been where you are. I was like that for 2 1/2 months. Try taking a probiotic, or ask your doctor if that’s ok- it might help your stomach, but take it in the afternoon or evening, not too close to your thyroid med. keep us updated on how you’re doing. Take care.

Hello, I am new to this forum, but need to know if anybody has experienced this? I started 75 mg. of Levothyroxine on July 29. About 5-6 weeks after this I started having IBS… I did some “googling” and saw that some people have experienced this. I called Dr. and he decreased it to 50 mg. Not any better…. stopped taking it altogether 1 1/2 weeks ago…. still dealing with it. Have colonoscopy planned for Nov. 1. Can anybody tell me how long it takes for the thyroid to level out again? I was only borderline hypo when I started the medication.

Is L-thyroxine the same formula for both active and inactive ingredients as Synthroid? I’ve had no trouble with Synthroid and will go back again to my doctor and buying a needed refill locally until I can get a new annual prescription from doctor. My doctor advised only brand name Synthroid.
Last refill the discount pharmacy sent L-thyroxine. Had doctor’s office re-fax prescription noting Synthorid no substitution. Mail order phone rep claims the L-throxine (Synthroid) Tabs sent are really same as Synthroid and that they now can’t sent Synthroid because it’s too soon to refill my prescription.

hi, I took my friend, male 63 250 pounds, to the va and they tested his thyroid. The test came back low and they gave him synthroid. He now sweats a lot and has anger problems. He has had a heart attack in the past and major damage to the lower part of his heart.
Also a thin wall between the upper chambers. There is nothing they can do for his heart but put him on meds and have installed a pacemaker/defib. The pacemaker is at 40%. I understand the importance of a low thyroid are these meds good for him?

I have been on Synthroid for over 30 years. I, too, am sensitive to a lot of medicines, have gained weight, lost a lot of hair, have poor tolerance to heat & cold (esp cold), have dry skin – the whole gamut of symptoms of untreated hypothyroidism / Hashimotos.
I also have had chronic depression, IBS & RLS for over 40 years – way before I started taking Synthroid. So, I understand what you are dealing with.
I have gone to many doctors over the years for this, and have used a couple of Endocrinologists over the last decade or so who check my blood and says everything is OK. I’ve even tried T-3 supplementation and didn’t feel any different.
Thyroid problems run in my family (Mom, Sis, cousins, Aunts) and we all agree that you just deal with each symptom or problem as best you can. You live with the weight gain, get a Hair Max to help with the thin hair, always have a sweater or blanket handy, and use plenty of skin lotion. Doctors only read what is in the lab results and prescribe accordingly; you have to be proactive to figure out how to stay comfortable on your own.

Louise,
Thyroid problems are really confusing. Having a level that’s out of whack could cause depression and/or anxiety, or symptoms that mimic it, but also if they put you on medication for thyroid, if your dose is off, that can also cause anxiety too.
There is a natural one that some doctors are willing to try… probably a d.o. I don’t think some m.d.’s like it, but it is made from dessicated pig thyroid. It’s called Armour Thyroid. You have to have a prescription for that, so you can’t buy it online. For some people, it helps a lot. I did not have that experience, but I am really sensitive to meds.
It is also bad that you do not have a regular doctor that you can see the same time you have a follow up. That is really important. I went through a period of seeing a lot of fill-ins, and it nearly drove me crazy. I was very sick and they just kept wanting to give me more and more meds, telling me that I had a UTI or irritable bowel syndrome, instead of listening to me and what I know about my body. If you don’t see the same doctor, chances are they don’t know what they need to know about YOU, and they would rather pile on more meds instead of working with what you already take, or changing the dose, etc. But if that is the only place you can go, then I guess you have to make the best of it.
What I do before my appointment is I write down a list of concerns so I won’t forget. If you have noticed something that you feel is significant, make them listen to you. Do not leave until you get answers to your questions. Do not let them rush you away. This is your life. You deserve to be treated like a person, not just a number.

Sheryl,
Your dose may not be right for you. From everything that I have been through, all I can say is that in order for you to truly feel better, you have to find the right dose and the right brand. Sometimes doctors over-estimate, and other times it needs to be increased. I hope that whoever prescribed this medicine for you is willing to work with you. It is crucial for you to find just the right amount for YOU.
When I took levothyroxine, my doctor put me on 50mcg and then (just my luck), was out of work because he had to have surgery. Therefore, I had no one to consistently follow up with me and I was left to just “deal with it”. I think that dose was too high for me. I am only borderline. I got very sick with an upset stomach and felt like I had the flu. I have had anxiety for years, but it seemed to aggravate that too. It did not start doing this to me til after several months into taking it. I could not take it anymore, so I stopped taking it since I could not get a doctor to change my dose or the brand. I became very worried about myself and was spazzing out all the time. I could not eat anything. What little I did eat, was stuff I normally would not want. It was just stuff I could eat quickly. My nerves were horrible.
I know you asked about something natural. I will tell you that there is something called Armour Thyroid– made from dessicated pig thyroid. It is hard sometimes to find doctors who will prescribe it. My regular doctor, a d.o., was quick to say yes you can try this. However, my specialist told me she does not like it.
It depends on each person, whether or not you do well with it. I have heard some people rave about it, but I think once again it aggravated my anxiety. It felt like someone turned on a heater inside of my body. My face was hot, I had awful heartburn, I could not sleep, could not eat, the anxiety was terrible. One morning after I took it, I felt nauseated when trying to brush my teeth and I threw up. I think for me, the added t3 (helps your body convert t4 better) was too much of a kick for my body, since I am very sensitive and already had per-existing anxiety issues.
BUT… I’m not saying that you will have that same experience or trying to tell you that it is not okay for you to ask your doctor about this. For some people, it is the answer and it makes them feel better. But like all medications, it’s a risk, and it’s trial and error. If you are a very sensitive person and have trouble with a lot of medications, just be aware of what happens if you decide to try that one. Notice how you feel. It is not like levothyroxine. It has more of an energy boost, and you will feel that. If that is what you want and need, then talk with your doctor about it. He or she may agree to let you try it.
Please do not give up or let this slide. If you know that you could be doing better, keep pressing your doctor. If they won’t listen, my advice is to find someone who will. This can definitely affect your emotions and how you function on a daily basis.
I do not know if you are just borderline like me or if you are full-blown hypothyroid, but the key is to keep an eye on it. Medicine is supposed to help you, not make you feel worse. I am currently doing the watchful waiting, not being treated for it, but I still think about it and wonder if I ‘could’ be doing better. The what-if questions are bad I know. So just do the best you can everyday, and let that be good enough for now. You will be ok. You’ll find the answers. Try to be patient, as hard as that is. But above all, don’t settle for not feeling well. There is a right medication out there for you.
Take care,
Erin

I have been on levothyroxine for 8 yrs… I was thin, but not anymore, plus my hair falls out every time I brush my hair, a lot of hair… I am hot all the time, the ac can be on cool, and I am still hot, sweating at night, can’t sleep, then tired all day, cry at the drop of a pin… so 3 months I stopped taking it… I thought I could lose some weight, I fell very depressed, very, crying, sad, no appetite, drink a lot of fluids… I feel the same on the meds, except for the crying thing… that only happens when I stop. I would like to find a natural way of doing this..any ideas?

Hey,
It’s me (Erin) again. I had already posted several months ago about my experience with levothyroxine. I took myself off it because I could not get any of the doctors to change my dose. I was tired of staying in the bathroom all day. When my regular doctor finally came back to work, he suggested to me to try Armour Thyroid.
Some people say it works really great….BUT…for me, it was one of the sickest times of my life. I have social anxiety/panic attacks/phobias…have been this way since I was a teen and now I am 26 years old. When I took the Armour Thyroid, it felt like someone turned a heater on inside of my body. My face got really hot, and at first that was the only thing I noticed. But the more I took it, the more I felt anxious. I had anxiety so bad that I could not sleep at night. I stayed awake, sweating, getting chills, muscles shaking, had no appetite at all, and my stomach was very upset. One morning when I took my pill, I felt like I was going to throw up (and I did), when I was trying to brush my teeth. I was supposed to be attending a concert the night before, but I was absolutely miserable. My stomach burned really bad (from heartburn, indigestion) and I had to suffer through a concert that was good, but I was unable to enjoy it. My only wish was to just go home because I felt so bad.
I called the doctor and he tried to tell me to take it every other day, but it was to the point where I felt like I was going insane. Pacing around the house at night, I could barely eat anything, and what I did eat was totally out of my character (just something I could grab and cram in my mouth because I was too nervous to sit down and eat a proper meal), and so I told him I wasn’t taking it anymore. It send me into a full-blown panic attack. By day 3 or 4, my throat felt tight and my chest felt heavy (I have had many panic attacks before, but never one where my chest felt heavy, so that was really scary), and somehow I made it through that, but that is when I said okay, enough is enough.
So I went back to him and told him everything I had been through and he told me not to take anymore thyroid medicine until I saw the endocrinologist because he did not want to aggravate the anxiety anymore. So, I was put on klonopin until I could get an appointment with an endocrinologist. She told me that my symptoms did not match hypothyroidism, she felt no goiter, and after blood tests, she said I tested negative for antibodies, but still had low/normal thyroid. She told me that her opinion was not to treat me unless my level was over 10. Of course, she said the anxiety is unrelated she thinks because I have had it for awhile. (although it was never THAT bad) So I am doing the watchful waiting. My primary doc, however, still thinks it needs to be monitored regularly, and I agree. It’s not just something you forget about.
All I can say is that ever since stopping the thyroid hormone replacement, my poop has returned to normal -sorry TMI. But I don’t know what those pills did to me, but they made it very nasty, smelly, darker than usual, sometimes green ugh!, and it would stick to the toilet. I knew that was not normal. All I wanted was for them to reduce my dose. They did not even start me out on 25mcg. They put me on 50, even though I was just borderline, and unfortunately that is when my regular doctor was out of work and all I saw for months after that were fill-ins who did not give a crap and did not want to change anything. I don’t think I would have gotten as sick as I did if they would have just tried adjusting (reducing) my dose.
Now I am back to square one. I am currently taking klonopin for anxiety twice a day, and it has stabilized most of my irrational fears and excess worrying. I also take trazodone at night, well half a pill, because I was not able to sleep well. I could fall asleep, just not stay asleep. My only issues now are that I still get annoying heartburn sometimes, and I cannot take most proton pump inhibitors, like nexium, prevacid, and prilosec. I tried all 3 and they send me to the bathroom all day. So for heartburn I have to use the old apple cider vinegar remedy. And I get jaw aches a lot. But, I think it’s when I get upset. I must clench my jaws or something.
I don’t know if any of my symptoms are related to thyroid problems or just anxiety exclusively, or some of both, but the endocrinologist seems to pass it off as anxiety. I am tired of wondering what’s causing which symptoms, so I am just going to tough it out. As long as I’m not having panic attacks and worrying relentlessly, I guess I can deal with the rest of the other symptoms.
I can tell you that when I took levothyroxine I hardly ever lost a strand of hair, but I lose some now— however, I know it’s normal to lose some amount of hair. It doesn’t seem to be a lot. Nothing that would concern me. And let me tell you I have seen the amount to be concerned about. If you see hair on your clothes, on the sofa when you lean back to relax, coming out on your hands when you run your fingers through your hair, now THAT is probably telling you that your levels are off too much. But a few strands when you wash your hair or when you brush it, you will be fine. Don’t let yourself get scared like I did. Losing a little bit of hair is okay and normal. You will know when it’s not, though. At that time I had no idea what thyroid problems were, had not been diagnosed with it, so I lost a lot of hair a couple of years ago. Thank goodness it was short though. It does take a little time for it to grow back or to feel a little thicker, though I doubt if mine will never feel as thick as it did when I was younger and before I had all these health issues. So I just keep it cut short most of the time, the short in the back, long in the front hairstyles..and I get it cut every 6 – 8 weeks. That seems to help keep it looking and feeling thick and healthy–and I promise you that nobody ever accuses me of having lost a lot of hair- they don’t even notice. ;)
Hormones can do a lot of weird things to your body, and don’t ever let a doctor tell you that it’s not possible for you to have certain side effects just because the majority of people don’t get them…because you know your own body better than anyone else and if you say it’s not normal, then it’s NOT…and don’t accept just any old answer from them. Keep digging, keep persisting, until somebody will listen and do something…and during the hard times in between, don’t lose patience. Stay as calm as possible, strong, and persistent, and laugh as much as you can…because if you don’t, you will let this problem worry you and that can take over your life. You still deserve a life, even if you are not feeling well.
Good luck to you all who are with me in suffering from this somewhat puzzling and frustrating problem.

Good evening to all. I had thyroid cancer & had my thyroid removed almost 5 yrs ago. I have been on 175 mcg since. The past week or so I have just been horribly stubborn about taking it, so~I know…. But, I am just so tired of not being able to sleep, of being tired all the time, my heart rate being out of whack, & my hustling trips to the potty. I use to never miss a dose, now I can’t make myself take it.
Really~there has to be answers & relief that doesn’t involve more meds!! I hate the low calcium side-effects. Can’t there be a way to fix this?
PEOPLE’S PHARMACY RESPONSE: THE SYMPTOMS YOU DESCRIBE SUGGEST YOUR DOSE MIGHT BE TOO HIGH. MAKE AN APPOINTMENT TO REVIEW THIS WITH YOUR DOCTOR. IF HE OR SHE PRESCRIBED A LOWER DOSE, THAT MIGHT RESOLVE YOUR DISCOMFORT.

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