Levothyroxine

I have been taking levothyroxine for two years now, and at times still feel very tired. Earlier in the year I had a very bad cold and took some decongestant medicine. I was not aware that there would be any interactions. Within ten minutes of taking the decongestant I was on the floor with severe stomach pains. It was so agonizing that I could not get up for awhile. The pain continued for another three or four days with stomach cramps. I thought that I may have developed IBS even though I took no more decongestant. I only discovered a few months later that these medicines should not be mixed. I do not know why this happened.

Can anyone tell me what the decongestants do either to the thyroid or to the absorption of the thyroid supplement? I have a thyroid problem; was hypo, is now hyper, we are trying to lower my medication.

I just had a cold and use Afrin and Mucinex. I have been off the sinus medicines for three or four days. Now I am feeling the symptoms of hypothyroid; depressed and anxious.

I would really like to understand the chemical reaction that is going on with the decongestants and the thyroid so I can make an educated decision in case I have to take the medicines.

I've been taking synthroid (levothyroxine is usually dispensed) for about 10 years. Lately, I've begun to experience mild anxiety that I suspect is related to the med. I'm on the minimal dosage. TSH blood tests have always been normal...without the synthroid when first prescribed, and with the med for the past 10 years.

During the past 6 months, I have significantly changed my diet. I've added sea vegetables and stick very closely to whole foods. After 10 years on this med, I am wondering if there is a safe way to stop taking it....to further investigate the link to my anxiety? A graduate of my school, The Institute for Integrative Nutrition, lectures about how she "cured her own thyroid disease." I'd love to have some more scientific information about this possibility. Thank you!

I haven't had any side effects from this medication, but I was wondering, are there any over the counter medications besides what has already been mentioned that should not be taken with levothroid? Is it okay to continue drinking soy milk?

An increase in Omega-3s in my diet in the form of fish oil (2 softgels per day-Nordic Naturals "Ultimate Omega") is the ingredient that seems to have finally helped eliminate an ever-present goiter of 10 years. I am still taking levothyroxine and have switched to more of an anti-inflammatory diet (along Dr. Sears/Zone Diet guidelines.

I started taking levothyroxine (I have hashimotos) about a month ago, and I was wondering if it was ok to continue taking green tea diet pills while I am on this medication?

I would really like to understand the chemical reaction or interaction that is going on with the decongestants and the thyroid, so I can make an educated decision in case I have to take the medicines. I was told I could not take Allegra D because of the decongestant, but I would like to know what could happen if it is taken with the levothyroxine. Can you help me with this question?

I have been taking Synthroid since early 1990. My dosage has never been changed. I have stopped taking it as of yesterday to see if i feel better. I disagree with some of the Dr.,s comments about side effects, I have many including severe weight gain. I weighed 155-165 lbs most of my adult life until about 8 years ago. I'm very active and cannot lose the weight! I am more fatigued than I was before I went on Synthroid. I want to enjoy the last years of my life. I'm 55 years old and don't want to sleep all the time.
Thankyou

I have been taking snythroid since march 2008 and have also been on Allegra D for 2yrs. I did not have any side effects.

Hello, my mom had a complete thyroidectomy and is now awaiting radiation. She was taking Synthroid but for the past 3 weeks doctor put her on another pill until her blood work etc... Now she's suppose to stop the other pill (don't remember it's name) but there's no mention of her starting up Synthroid again until her blood test - is this normal?? So for about 2 weeks she won't be on any Thyroid drugs?? Can someone please comment.

Hi, just wanted to tell you it is normal treatment. i have thyroid cancer and had my thyroid totally removed in november. I was without any thyroid medicine so i could go through the I-131 treatments with radioactive iodine- i finally got my synthroid last Saturday after months of nothing! Let me tell you - your mom will feel horrible so be kind to her. I have experienced anything so pitiful as being without a thyroid or any hormone for two months!

am taking 100mcg levothyroxine for approx 2 mos. I am ready to dump it due to irregular heartbeats increased pulse rate 110. I have to watch my exercise routine.
I check my BP- daily now it seems and may be perimenopause as well.

I am looking into alternative therapies- but I honestly can say I noticed an improvement in my attitude and less pufiness and hair/skin problems. Why cant we just heal ourselves naturally? I read synthroid has a narrow margin for balance -the dosage amount may have you teeter for the rest of your life.

Does anyone know if I should take or not take my Levothyroxine the same day, prior to having labs drawn for levels, or does it matter? Thanks. Sean.

I recently was at a friends house. We had a bonfire and everyone was having fun except me. Every time I tried to get up where I was sitting everything would start going grey, I felt very weak and tingly and very faint. If I would not have sat back down I would have passed out.

This went on for about an hour or two. I finally just wanted to go home. Well, I didn't make it home. Before I knew it I started another passing out session. I pulled to the side and had some water. This made me feel better so I continued my mission home. Unfortunately I did black out and ended up crashing into the rear of a car which was parked at a stop light. In addition I was not drinking!!! Later I was taking my meds which includes Synthroid.

That night I realized all my meds were there except my Synthroid. After days of looking for my Synthroid I found it between the fridge and counter on the floor. I don't really know the exact time I had been without Synthroid but I'm pretty sure after thinking about it that it could have been two weeks by how many tablets were in the bottle. My Question is, is it not taking my Sybthroid for two weeks could that have caused this fainting and blacking out hitting a car and not knowing why?
Thanks.
Will

My mom had her thyroid removed about seven weeks ago, tried 5 different thyroid medications.
She is so sick and has terrible diarrhea from all her medications. She is now in the hospital and
every time they try giving her a thyroid pill she will start
getting sick all over again.

I'm really stumped as the doctors are with this.
Any help would be greatly appreciated it. I'm afraid if they don't figure this out something could happen to her.

I have spend 6 years without any thyroid medication. I was born without a pituitary gland and Synthroid is one of the meds I've had to take. For my entire childhood it felt like a rope tying me down, and when I was in my early 20s and I just quit. I have felt like a sack. laying on the ground.

I've had only willpower aiding me to do simple things no matter how much I've eat/starve myself I gain weight. I'm at 280 pounds. It's not a life I have enjoyed in these last years and be damned I'll be talking to my doctor about taking Synthroid again. Life sucks without energy. Just getting out of a chair takes time. Walking takes time. It's been a test of will and it never had to be. If you question the balance of your thyroid medicine that's fine but it's worth it. It's not a rope holding you back it's the key to having a decent life we all should have had.

Six weeks ago, after taking Synthroid for nearly 3 yrs., I discontinued the medication at my doctor's request. My resulting bloodwork came back normal. However, around the time I stopped the Synthroid, I began having loose bowels in the middle of the night. Is there a connection?

Sandra, I just read your blog it seems as though I wrote it i have the same symptoms. Actually iIwent to the Dr after a couple of months of rapid heart rate & nocturnal panic attacks and she put me on prozac. OMG, I got worse. I just quit the prozac (weaned off) and I cut my levothyroxine in half to 50mcg. I feel she put me on too much, she disagreed because my blood work showed normal, however I am not.

I too think I am going through peri-menopause I am 44 I will see my Dr tonight, I am going to ask her to send me to an endocrinologist. This isn't right. Good luck to you let me know if you find out anything. P.S. I am taking Colonopin for the terrible anxiety, I hate this!

Hi Alf. I have just read your comment and would be interested to know how you got along when you came off the synthroid. I am on levothyroxine and feel awful exhausted, bloated and piling on the weight. This is really hard to take as I have always been slim and very active. Thanks, kay

I have been taking Levothyroxine for 8 months. I started with 100 mcg but the doctor reduced it to 88 after a couple of months. My blood work shows my level to be at the top of the acceptable chart. I also started taking Lipitor 20 mg at the same time, and this has been increased to 40 mg. after two months.

I have not felt well since. I have gained 25 lbs. without changing my diet or exercise. I reduced my calories and increased my exercise, but am unable to lose any weight. My weight it still increasing. My hair is getting thinner, drier and curly. I experience extreme insomnia, and suffer chronic fatigue. I frequently feel excessively warm. I am at my wit's end trying to cope. Any ideas?
Nancy

Sandra and Lynn and anyone else having similar side effects, I wonder if you are also taking metformin (glucophage)? If so, I have an answer for you. I started taking metformin 3 months ago, then synthroid 2 months ago. Doc raised my synthroid after labs showed a still low thyroid. A week or so later, I began getting severe tachhycardia (very rapid heartbeat) so much that my internal defibrillator shocked me 4 times.

I would have been dead without it. Anyway, trying to figure out why after 10 years, my v-tach was back (last happened in pregnancy) I did some research. I found out that metformin can give you a sort of "false positive" on TSH. It looks on tests as though you are hypothyroid, but if you test your thyroid horome, it is normal. Therefore, the synthroid you are taking is probably unnecessary and most likely an overdose which can cause all that heart nastiness and fainting and insomnia, etc.

Have your doc check your actual thyroid hormone if you take any diabetes drugs. You may save your life. Jan

PEOPLE'S PHARMACY RESPONSE: THE DOCTOR MAY WANT TO LOOK THIS UP: TSH-LOWERING EFFECT OF METFORMIN...BY CAPPELLI ET AL IN DIABETES CARE, SEPT., 2009

Just had thyroid out - put on synthroid - also diabetic - I can find nothing good about synthroid on any web pages. Why is this the best or at least the way the doctors seem to send people.

PEOPLE'S PHARMACY RESPONSE: MOST OF THE PEOPLE WHO ARE HAPPY WITH THEIR SYNTHROID DON'T POST ABOUT IT. MANY, IF NOT MOST, OF THOSE WHO ARE PRESCRIBED SYNTHROID DO WELL ON IT. DOCTORS PREFER IT BECAUSE OF EASE OF DOSING, AND BECAUSE IT USUALLY WORKS WELL (OR WELL ENOUGH, AT LEAST) FOR MANY OF THEIR PATIENTS.

I am taking Levoothroxin medication and I wanted to know if Advil, grapefruit or coffee effect the way this medication should work?

Went to the doctor to see if he could help me lose weight, I suggested he check all my hormones since I am 57. I went through menopause in my middle 40's and have not been on any hormones since that. Did not have all the bad side effects of menopause and always felt fine, with energy. Past years I have been putting on weight and can't seem to get it off, and i am active.

Doctor did not check all my hormones but just the thyroid, and said it was slightly below normal and put me on levothyroxin, said it will help me lose weight. After a little over 2 months had to quit because I was itching myself to bleed. I called the doctor and he said to stop taking them, I told him I think I need to ween myself off of them, and his nurse said just to go off of them, and they have not called me back since then to check on me.

I have been feeling so terrible since I have stopped taking them, bloated stomach, weight gain, dry mouth, very tired, depressed, I can't stand it. Did not feel this way before I started taking this awful drug. So I went to a doctor who specialized in Bioidentical hormone replacement therapy for women and men. She was astounded that this doctor put me on levothyroxin without checking all my hormones.

She feels strongly that to many doctors put patients on this medicine before checking all the other hormones in your body. I am going in this week to get results of my blood tests and hopefully she can find the right combination of hormones for me to make me start feeling like I used to.

If anyone is interested google "Bioidentical hormone replacement therapy, and there are no serious side effects to this method. .. Always get second opinions before you start putting drugs in your body, I will from now on.. Good Luck to all.

I am currently taking synthroid, Allegra D, and Advair. The side effects are an increased resting heart-rate. Mine is now at 92bpm, which is about 12 bpm above the range. My doctors aren't too concerned, because I'm still active, and I have a low blood pressure. So, my overall health is very good. I also have found it difficult to fall asleep.

However, drinking a sleepy time herb tea can has been helpful in relaxing at bedtime. I would also check with your doctor about possibly getting allergy shots. You get them once a week for 20 weeks and then once a year for 3 years, which sounds like a crazy commitment, but after that you are basically cured. (Nothing can really cure allergies, but you no longer need medication or shots.)

I am also wondering whether I should continue drinking soy milk, a cup a day at breakfast, which is about an hour after I take Levothroid. I know that I can consume walnuts but at least 4 hours after I take the medicine. Does anybody know?

Thanks

PEOPLE'S PHARMACY RESPONSE: AN HOUR AFTERWARDS SHOULD NOT AFFECT LEVOTHROID ABSORPTION. IF THAT CUP OF SOY MILK IS YOUR ONLY SOY, IT PROBABLY WON'T BE ENOUGH TO INTERFERE WITH THYROID HORMONE ACTIVITY. WE HAVE NOT SEEN STUDIES OF THIS.

Lynn- did you find the cause of the panic attacks? I had been on sythroid for 16 years when I started having the panic attacks. I went off all my supplements, thinking surely it couldn't be the synthroid after all that time. They didn't go away, so I tried stopping the sythroid. After two weeks of being off the sythroid the panic attacks were gone. Because I was then feeling hypothyroid, I saw a holistic doctor who put me back on a very low dose. I had a horrific panic attack within hours of taking that tiny dose, and it took days to finally completely resolve. Going to an endocrinologist tomorrow, wonder if it is adrenals.

I started taking 50mg of Synthroid because I had an elevated Tsh even though the T3 and T4 were fine.
I'm also on Prozac 20 mg.

I have only been on this combo about a month. I feel terrible! Tired, but not sleeping well, dizzy all the time, nauseous. I feel hot and irritated.

I have lost weight, but attribute that to the Prozac since I started it about two weeks before the Synthroid. Once I started the Synthroid, the weight loss stopped.

I'm about to retest my thyroid to see what is going on ,but thinking I may cut my pill in half first because I can't take the way I've been feeling.

I think what I technically had was "subclinical" hypothyroid. Perhaps I do not need 50mg to start off, but more like 20.

Anyone know any reason why my TSH would be elevated, but the T3 and T4 and free are fine???
I'm not on metformin or any other drugs.

I was also born without a pituitary gland do you know of many others born without it?

does levothyroxine help patients with under-active thyroid as prescribed by a doctor? I want to hear your success story! thank you

I too was on Synthroid, but felt as if it let me down after 12 hours... tired, sweaty, depressed. With the help of a Naturepath I was put on Armor Thyroid and Vitamin D 5000 Units.

I was diagnosed with Fibro while on the synthroid, and have been nearly symptom free since I got off of the Synthroid. If you are depressed try Vitamin D.. take a lower dose than I do, since you need to follow the levels with a doctor.. I guarantee you that you will feel better if you get off of Synthroid and start taking Armor thyroid, or dessicated thyroid from a compounding pharmacy.. you will need to have your dosage adjusted every 3 months until you find the right level, so stick with your doctor...

Armor and Dessicated Thyroid have been around for 100 years, and are proven safe and cheap! Doctors do not get a kickback by prescribing Natural thyroid, the way they do for Synthroid, so you may have to insist that the doctor change your prescription.

Sean, My doctor told me to take the synthroid/levothyroxine at the usual morning time, even if my blood is drawn a little later that morning.

I have the same questions!!! Last night i ended up in the ER an hour after taking Mucinex-D. I couldn't breath, heart rate was 130 lying down, BP was high, felt jittery, cold, like I was going to pass out, and could even fell my heart pounding. After a EKG, blood work , and chest x-ray... I was low on potassium and was told I have a low thyroid. After reading the label on the mucinex it does warn against hyper but not hypo... Now I'm scared and confused. I really thought my time was up last night. Taking my first med for hypo thyroid tomorrow morning.

I'm replying to Alf and CF: I am 59, and I've been on synthroid for almost 10 years, moving up from 75 to 88 mcg. I have had increasing fatigue, fibromyalgia symptoms, nausea, constant sleepiness, and also palpitations at times. I went off it last week, because I have noticed that I feel better when I skip a dose. I am sleeping much less, actually too little, right now. I have lost the heavy feeling in my legs, I feel more alert. All in all, I feel like I am coming out of a fog. I am more constipated. I am waiting to go to my doctor to determine whether my blood level qualifies me for the use of a different medication.

I have a lot of autoimmune disorders, including Hashimoto's which was the cause of my hypothyroid, but I wonder if I have developed a further autoimmune reaction to the synthroid/levothyroxine, or whether this was just a side effect. In any case, I don't want to go back on synthroid ever again, even at a lower dose.

My blood work was just taken a month ago, and it didn't show an excess of the thyroid, so I don't trust that I can successfully use synthroid at a lower dose. I know the synthroid reaction isn't my whole problem, but I think the treatment became worse than my original problem. I hope I can try the natural thyroid meds.

I have had several instances where what I was eating dramatically decreased my absorption. I know it isn't the same for everyone, but with me, I've had to start setting my alarm at 3 am to take my pill so it is fully absorbed by the time I eat anything. Some culprits were caffeine, soy protein, milk, walnuts, omega 3 vitamins, pre-natal vitamins, high fiber foods like oatmeal. I have also heard that it helps your bodies absorption to chew the pill and swallow it with full glass of water.
Good luck everyone!

I have been taking levothyroxine 50 mcg since jan. 24 2011. My tsh was 32.524 at start of medication. I feel very anxious impatient, overwhelmed, short tempered and moody. I have a lot of gas and my stomach often feels bad. I relayed this to my dr. and she wanted me to go to urgent/crisis center.

Shouldn't she have do another check of my tsh and adjust my meds.? Also nov. 16 of 2010 my tsh was 4.490, any idea what could have caused just a drastic change in short time? I didn't start any new meds. or have any illness during that time. I should mention that a cyst was discovered on my left kidney at the time of thyroid check, she didn't seem concerned about that. could that be related? I'm really at wits end here please help... thank you sooooo much.

Can I take Synthroid and Atenolol together? and then two hours later take my Calcium with Vitamin D supplement?

PEOPLE'S PHARMACY RESPONSE: BETTER TO TAKE SYNTHROID ALONE, THEN TAKE THE ATENOLOL AND WAIT UNTIL LUNCH TIME OR AFTERNOON TO TAKE THE CALCIUM PLUS VITAMIN D SUPPLEMENT.

It's best to take synthroid first thing in am you should wait 1 hour to take anything else. I confirmed this with MD and Endocrinologist. LM

PEOPLE'S PHARMACY RESPONSE: IT IS IMPORTANT TO TAKE SYNTHROID AT THE SAME TIME EACH DAY ON AN EMPTY STOMACH. IT CAN BE FIRST THING UPON ARISING, OR JUST BEFORE BEDTIME. CONSISTENCY IS THE MOST IMPORTANT THING.

Lynn

I am curious did you wean yourself off the synthroid or go cold turkey?

Your experiences sound very similar to mine.

Thanks!!!

I missed a dose by accident when I was on a trip. I realized, as I had speculated when I neglected to take the dose in the morning other times, that I felt better! I just did not take it again! I did not have a withdrawal experience, which is notable, because I have withdrawals (or rebound effects) from just about everything. I felt better and better: no heaviness in my legs when I climb stairs, no periods of extreme exhaustion and nausea, no palpitations.

I do have fibromyalgia, so it's not like I feel great most of the time, but certain specific feelings of exhaustion were noticeably less pronounced. Although my doctor wanted to put me on a generic version of Synthroid, I requested Armour thyroid, which I understand from the doctor, is derived from pigs. I feel fine on the Armour; I'm about to have a blood level taken, since it is harder to regulate, because the dosing is less precise. I feel more energetic on Armour than I felt before. So far I haven't noticed any side effects. I'll let you know what I find from the blood work, and whether I can be managed on Armour, or need another medication in addition, as I read on this site, some people do.

I have had the same problems with Synthroid as you described and every time my prescription is finished I often forget to refill it for a while and if it goes more than a week I start to feel so much better... clearer, more energy etc. I assume I will have a drop in energy after some time but to me it indicates that the levothyroxine is not working for my hypothyroid symptoms.

Today I was doing some online research and there was a wonderful site that discusses how to use natural desiccated thyroid so that you are getting the full range of thyroid hormones normally produced by the body. Another important point they discussed was that if a person is taking thyroid replacement but their ferritin (iron storage) or adrenal function is low, they will experience anxiety and many bad effects. I think the website is something that every hypothyroid patent should read so I am posting it here.

www.stopthethyroidmadness.com

I have been taking Synthroid only for 2 months and have experienced rapid weight gain, leg cramps, changes in bowel. I do not want to stay on this medication. I had no symptoms of hypothyroidism, but had blood work done as part of an annual physical. My TSH came back at 11 and my doc prescribed Synthroid for me. He also prescribed my 11-year-old daughter the same medication and she has no symptoms either.

I should have done my homework before we began taking the meds, but now I wonder if we will be okay to stop them since we haven't been taking them that long. I called the doctor because of the leg cramps and they sent me for another blood test. My TSH came back at a 2.5, which seems pretty drastic for only taking the meds a few weeks. I'd appreciate any comments/experience in a similar situation. We are due to go to the doc for checkups in three weeks.

I'm a 58-year-old female (5'5"/108 lbs.--I've always been thin and athletic and can pretty much eat what I want with little or no weight gain). I told my doctor about a couple of symptoms I was having; muscle fatigue, dry brittle nails and lack of concentration. She tested my thyroid. My TSH was 4.87 which the lab said was "mild" hypothyroidism. She started me on the minimal dosage of 25 mcg Levothyroxine.

I immediately started experiencing bouts of dizziness and major hair loss. After 2 weeks of being on the med in addition to the first 2 symptoms, I started having extreme shortness of breath (such that I could barely talk!), a slight drop in blood pressure, and feelings of becoming faint. My BP is usually around 96/66, but I started having readings of 84/58 and once 81/54. My pulse remained normal. After a week of this (a total of 3 weeks on the med) I stopped taking it, and put a call into my doc to let her know what was going on. She said it seemed very odd that I would be having such an adverse reaction to a minimal dosage of Levothyroxine, but of course anything is possible. She was going to wait a couple of weeks (after the med was out of my system) to see if I was back to "normal" or if the symptoms continued. I hadn't mentioned the faintness, yet, but when I did she said she wanted to see me immediately. I think she's afraid something may be wrong with my heart. Obviously, I hope not!

I think it is the med as it seems awfully coincidental the symptoms began when I started taking it. Anyway, that's it for me; I won't take it any more. I'd rather deal with my other symptoms than feel like this. A friend suggested I read the book, "Adrenal Fatigue" by Dr. James Wilson. She thought it might help shed some light on my symptoms and drug reaction. I'm headed for the book store!

I have definitely had my share of medical issues due to doctors not wanting to recognize or accept that I am highly sensitive to medication. I have had anxiety and depression for years, and doctors would put me on medication for that which didn't really solve the problem. I wanted to come off Cymbalta because I had gained a lot of weight (it made me hungry for a lot of sweets, I wanted to drink alcohol more, go on more shopping sprees, it was like I lost control of a lot of things) and before I really had a chance to let that get out of my system, the doctor told me that I was borderline hypothyroid and needed to start taking pills for it.

Part of me wanted to wait and see if that had anything to do with Cymbalta (anti depressants slow down things) but I was tired of being tired. They started me on 50mcgs of levothyroxine, and if I was only borderline, I don't understand why I wasn't started at the lowest dose. I thought I was doing a lot better until the past month... when right before my period my stomach got very upset, and thinking back on things I realized that ever since I have been taking the levo. the texture of my stools had changed. (sorry too much info) They were very soft, almost like diarrhea.

My period used to last for a full week, but it made it get shorter (I have no complaints about that, but whether or not that is medically healthy for me, I don't know). Anyway, the diarrhea really got bad the past month... it's first thing in the morning, as soon as I wake up... sometimes before, but definitely after I take the levo. like 30 mins or an hour later I am running to the bathroom. I also had some indigestion... burping, heartburn, stomach making weird noises. I also have been taking klonopin to help me sleep. It was a very low dose, but I don't want to stay on it forever. I have been cutting that in half, and my sleep problems are back. It takes awhile for me to get to sleep, but then a few hours later I wake up. I feel very anxious at night, and I feel afraid to go back to sleep.

When I went to the doctor, they said I had a mild UTI, and gave me nexium and hyosciamine (they thought I had gastritis), and gave me macrobid for the UTI. My appetite came back, but only temporarily, probably due to the antibiotics. They felt no swelling when examining my stomach. So I was told if I was still having problems they would check for H. Pylori. I keep asking the doctors if it has anything to do with thyroid stuff and they of course are denying it. I am waiting on the results of the H. Pylori, and if I am positive then I guess that is the answer... BUT if I'm not, I may have to TELL the doctor to make a change about my thyroid medicine.

I know something is wrong. I should not be feeling sick everyday. My poop started turning green sometimes. Now my appetite is gone again. If a person is getting too much thyroid hormones, it can cause a lot of the same symptoms... especially loss in appetite, diarrhea, etc. They always just tell me that my thyroid is 'normal'. Every single time. They have never changed the dose. What their test results say is 'normal' may not be right for my body. A lot of people have told me that Levo. is not as good as the name brand, but most doctors I know, always say there is no difference.

I have to be my own doctor and it's sad. They don't want to think outside of the box since I am sort of a special case, since I have so many allergies to medications. I used to be on topamax and I did not get side effects until like half a year into taking it - hair loss, sores on my face (they kept treating me for bacterial infections and it never went away!), that is when I figured out it was the topamax... I tapered off it after going to a dermatologist and he agreed with me that it was possibly due to the meds, and after being off it for a month I had already started to see improvement. Half a year later my symptoms were almost completely gone. Although the hardest to get rid of was the heat intolerance. I would get red itchy rashes when I was somewhere hot or in the sun, and it made it impossible for me to enjoy the summer.

Most doctors told me oh no that is not related to the topamax at all... but it WAS. So now I am thinking I may have to challenge what they are saying about levo. I have been on that for probably 5 or 6 months, but I think just now over the past month is really when I have been able to see the adverse effects of it-- which doctors don't believe, they say I would have had them sooner. That's not true for me. It can take months for stuff to build up in my system enough for me to see what it's really going to do.

In my case, the less medication, the better. And for any of you who are having doubts about levo., you are not alone. Hormones can really mess up the body. The only good thing I have noticed is that ever since I started taking it, my feelings of depression seemed to go away. But I think I'd rather be depressed than have these stomach issues everyday. It is hard to function at all. I seem to feel better later in the day for some reason. Morning is when it's the worst.... and all I do is get up and take my levo. with a bottle of water.... but it seems to be aggravating my stomach. I don't know how to get a doctor to believe me and do something about it.

merrie, I took synthroid for 9 months due to infertility treatments and am now taking a break so I want to get off it. I stopped it about 2 weeks ago and now I am having the same symptoms as you. My food is running through me. I can't say it is conclusive but I'm pretty sure it's due to stopping synthroid.

I didn't have any bad symptoms on it except that my heart would become quite erratic sometimes. However I just had a physical and I guess I have high cholesterol now so that might account for it. I'm taking steps to reduce that.

I go to a "clinic" where people go that don't have insurance or money. I am glad they are there, but I see whatever Dr. is available. One told me I had a thyroid problem about 1year ago, gave me synthroid, which I did not remember giving any side effects. Then I was told by another Dr. I don't have a thyroid problem and to stop taking the pills which I did.

I noticed my hair getting better and better. I had some ER trips before all this and was given Atenolol for my fast heart beat and xanax because they said it was anxiety. Now, just recently I was told by another Dr. I DOOO have a thyroid problem via more TSH tests and put me on Levothyroxine. I experience scalp tingling, high feeling, lots of bathroom trips (both areas) and great fatigue.

I have experience a weight gain of 20 lbs in 2 years, but I just attributed that to lack of exercise and my new boyfriend's excellent cooking and age-I am 59. I am so paranoid about medicine whatsoever, as I have worked in the medical field (Administration-plus Dr. Scripts etc..) and know what side effects and interactions can do to a person!!! So, I don't take the xanax like they want me to, I just take it when I start feeling a little shaky.

I do take the atenlol and my ER trips have seemed to stop, but now the side effects from this Levo is almost wanting me to go to the ER again. I have called and told the nurse at the clinic, but they seem to ignore these side effects and said my body needs to get use to the med. I don't want to lose my hair, gain weight, or feel as though I am going to pass out, or feel high and then feel fatigued anymore.

I am at wits end with one Dr. telling me one thing, and another something else. I wish there was a natural supplement for thyroid, but all the sites I visit seem like scam supplements that they want you to pay for over the internet which I won't do. Please someone-any answers????

I am taking 100mcg of Levothyroxine. I do not have restless legs anymore, my nails are growing I am urinating better and I have not lost any weight yet. Is this normal? Do I need a higher dose?
Thank you.

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.

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.

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?

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

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.

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.

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?

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.

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.

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.

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.

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.

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 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....

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 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.

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 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.

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.

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

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

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).

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.

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

*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. :)

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 . . .

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 is 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.

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

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!!!!

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

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