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Thyroid Symptoms Call for Careful Dosing

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Q. I have been taking thyroid hormones (first Synthroid and then Levoxyl) for more than 15 years. My doctor has recently started lowering my dose because he is concerned that the extra thyroid might weaken my bones.

Ever since the dosage was reduced I have had many troubling symptoms. My cholesterol is going up and so is my weight, although I am exercising and eating carefully. I am tired, cold and depressed most of the time. My skin is dry and my fingertips have painful cracks and my nails are splitting. My hair is thinning and my eyebrows are fading away. Along with all that, I have absolutely no interest in sex. What can I do?

A. Although excess thyroid hormone can weaken bones and contribute to osteoporosis, getting the dose just right is essential for good health. All the symptoms you have described could be linked to insufficient thyroid activity.

We are sending you our Guide to Thyroid Hormones with information on how to interpret thyroid lab results as well as treatment options so you can discuss this with your doctor.

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Having been diagnosed with Hashimoto's disease for 20 yrs (hypothyroidism), I can tell by the questions that people don't understand what their thyroid medication (Synthroid) is doing for them. It should be made clearer to your audience that the more Synthroid a person takes, the lower the TSH (thyroid stimulating hormone) blood test will be and that means the more HYPERthyroid they may become to the point of having hand tremors, fast heart beat, mental cognition problems,& especially potential bone density problems.

The most confusing for people is that to bring the TSH level up to the normal range, they must take LESS Synthroid.

People who can't regulate their TSH well should be advised not to take calcium or iron within 4 hrs after taking their medication. If that does not work, try testing their water (especially if they get their water from a well) as it could be high in iron which impacts the absorption of the Synthroid. I've discovered that simply using filtered water for coffee and tea has allowed me to keep my TSH in a very narrow but normal range.

I too have hypothyroidism. I am taking Levothyroxine. Have dry skin, nails in bad shape, occasional diarrhea and possible irregular heartbeat. Constant itch is a problem, what to do?

I've been taking thyroid for 50 years. First, Armour Thyroid and then Synthroid and now back to Armour. I had a bone scan within the past six months and my bones are perfect for my age...72 years old. I'd say find another doctor, preferably an endocrinologist who is well versed in thyroid disease. One doctor I went to tried to tell me I had diabetes and after being tested for everything but the kitchen sink, No, I don't have diabetes but I still have no thyroid gland due to taking radioactive iodine 50 years ago. I don't think I'm an exception.

I too have been diagnosed with Hashimoto's disease over 40 yrs. ago, was put on Armour Thyroid, was switched to Synthroid for just a few yrs., and then (happily) back to Armour again. Every time a doctor tries to adjust my dosage, I experience symptoms of low thyroid: brittle nails, dry skin, being cold, hair loss, etc. After 40+yrs. on thyroid medication, my bone density scan was normal for my age (66), so am not concerned that too much thyroid medication is harmful in that respect.

I was diagnosed as having a low thyroid about 45 years ago when my inability to conceive and my significant hair loss alerted my doctor to a potential problem. At that time I was prescribed cytomel, which I took successfully for many years (during which time I also gave birth to two children!)Then about twenty years ago a new doctor felt that I should be taking synthroid instead of the cytomel.

I took the synthroid, but experienced a debilitating fatigue that affected the quality of my life, not to mention the weight gain, etc. Finally, my doctor put me on both synthroid and cytomel. Almost immediately I felt better and returned to my normal weight. I don't know if both medicines are frequently prescribed at the same time, but I do know that the combination seems to be what my body needs.

I was dxed with Hashimotos 8 years ago and take Synthroid. I've gradually had to increase the dose. For the first time in 8 years I find my TSH does NOT coincide with the FT4 hormone level. I no longer go by the TSH, only the FT4 test. When my TSH was midrange I felt good, now when it is midrange I have Hypo symptoms and feel awful. I finally convinced my doc to not go by the TSH lab result.

I told him I DO NOT have symptoms, he agreed. His argument was too much hormone would affect my heart and bones. I had a density test and my bones are so strong, those of a 21 year old. My belief is strong bones may be due to heredity. My mother's family all have very strong bones and never did anything to take care of themselves as in eating healthy and doing stress exercises.

If I had symptoms as Diane does (which I did at one time) I would increase meds. The doctor should understand it is NOT the numbers it is how we FEEL. Diane would do well by going to a thyroid health forum, that is how I learned.

I can identify with P. Tolentino's description of her symptoms...splitting nails, dry skin, itching, occasional diarrhea..I have them all except the irregular heartbeat....they are very annoying and I have not really found a solution....help!

I was showing symptoms, but my numbers were "normal" for years. When my numbers finally got low enough, my doc put me on levoxyl. It helped, but after several years, I still had problems with some symptoms. My doctor insisted "I can't treat symptoms. I have to treat by your lab results. If I raise your dose, you'll get too high."

I asked for a complete panel that broke down the various thyroid levels. It showed good levels for everything EXCEPT for T-4. A compounding pharmacist here suggested that perhaps my body just doesn't do a good job converting the T-3 of levoxyl to the T-4 my body needs. My doc raised his eyebrow at the suggestion, but when I asked him to switch me to Armour Thyroid, which I know is a complete thyroid compound, he complied. Within two weeks my symptoms started improving!

I have had all of the symptoms and problems as all of the above. I was diagnosed with polycystic ovarian syndrome and apparently Hashimotos's in the early 1960's. I am now in my 70's. I was on Armours and Cytomel in the early years. I was unable to conceive but otherwise was doing OK.

A doctor changed me to Synthroid because he said it was easier to prescribe, I have been on Synthroid ever since. A bone density test indicated I had the bones of a person much younger. Another doctor had me on alternating 100mg of Synthroid one day and 50 the next. I don't know why, but I guess it was working. It was changed to 75mg every day about two years ago.

But now I have all kinds of problems. I once had a thick head of hair. Now my hair is all falling out; my nails are brittle and splitting all the time; I spend my nights scratching the itch on my left arm and elsewhere; I have so much facial hair growing I cannot go one day without shaving like a man (I just cover up the other hair); I have developed a heart murmur; I have gained a lot of weight no matter what I do (short of not eating-I didn't have a weight problem per se); I ache all over and my joints are painful; I am tired and sleepy all the time.

My quality of life is in the sewer; I have all the symptoms of a diabetic, but I am not one. I am just waiting to see what will happen next. As soon as I find an endocrinologist I will be there.

I'm on the same boat just like you guys, I was diagnosed with hypothyroid in 2001 and i was taking 100mcg of Eltroxin in india and now in the UK. Since 2004 I'm taking Levothyroxine 100mcg, even though my doc says that it's under control, I still have symptoms.

I got married last year and thyroid has affected me badly..no sex drive at all..lot of gas problems due to slow metabolism..hair loss..memory loss.weight gain..passing urine so much..bloated..fatigued..mood problems and insomnia.

Some times and I don't know what to do..I don't trust my doctors at all...because they give me same answer all the time,,my biggest problem is irregular periods and I want to have baby this year.. I don't know what to do..

I have been hypothyroid for about 15 years, along with having Celiac Disease. Many people become hypothyroid due to undiagnosed Celiac Disease, but that's another discussion for another day. ; )

If a doctor goes by TSH only when diagnosing thyroid problems, get another doctor, pronto! It is useless to try and regulate using this method because if you have Hashimoto's thyroid, that is autoimmune in nature and it will vary, depending upon stress levels, what you eat, etc.

Use T3 and T4 levels and dose according to symptoms. Many people are poor converters of thyroid hormone and unless you check these numbers, you will not know. I went through hell until I found a doctor who actually knew what she was doing and now I may be lowering my dosage soon due to IMPROVED thyroid function. She also said if my symptoms come back, she'll go back to the original dose. You have to be practically overdosed on thyroid hormone to cause bone problems.

My last TSH number, for whoever cares, was 0.01. Most doctors would have a coronary if they saw that. If I try to increase my TSH numbers, my symptoms come back.

I was in a test program for an anti depressant. When I left the program I asked the Dr. what else I could do. He said my thyroid TSH level was always 'off' but still "normal". He suggested synthroid, to be adjusted until my TSH was between 1 and 2. [normal is 1 to 5, mine was always 4-5]
Been on synthroid generic for 10 years. TSH is about 1.5. Feeling fine.

I have been on Synthroid since 1990 (Hashimoto's) and dose has been lowered and lowered and lowered again in response to the labs (TSH). I have been having all the symptoms that everyone has listed and when I TRY to address them with my Dr. and Endocrinologist they "pooh pooh" me. I am not rich and cannot run from Dr. to Dr. How can I get them to listen to me? I would not take more of my medication than prescribed at one time. I want to live my life like a normal person. Living this way is not living at all.

Re the itching: here in NZ, intense itching was one of the (many) symptoms thyroid patients went through when our brand of medicine was changed. After 2 years, we finally were able to source another brand; but many of us have the itching again. My pharmacist says it is because the manufacturer of the troublesome thyroid medicine also makes some of our other drugs, & uses the same fillers - which are the cause of the problem. If it is possible, it may be worth your changing the brand of thyroid medicine that you take.

Latika, as I said in an earlier statement. GO FIND A GOOD ENDOCRINOLOGIST WHO IS WELL VERSED IN THYROID PROBLEMS. If you have to, go to one until you find one who listens to you rather than the "test results" if those test results are not satisfactory! You won't regret "shopping around".

I went to a physician for my thyroid difficulties who goes by a patient's symptoms instead of just by labs. He also makes you take your temperature and heart rate before getting up from bed in the morning. Since my heart rate was 62 and average temperature was 97, along with a TSH of .457 he concluded that I needed Cytomel. He believes that the latitude of TSH values commonly used now, are too wide a range and uses his own scale.
After being treated I am much more energetic now than before when I used to crawl to the couch and collapse every night after supper.

Have been taking thyroid since 1963, when my thyroid gland was irradiated after it grew back following a thyroidectomy. Began with Armour, which I took for many years 'til I was told it was no longer manufactured. Several other brands, including generics were prescribed, with varying degrees of success. Have been on Levoxyl for several years but have been bothered by exhaustion, loss of hair, splitting nails, about 18 years of hot flashes and now memory loss. I am good at eating properly and getting exercise and am considered healthy & in good shape. I don't get to see my thyroid tests results but will ask at next testing.

Armour is READILY available from several sources. Just google "armour." Most doctors and many endocrinologists are not well versed on thyroid matters. Also, most doctors prefer to sell synthetic hormones which often do not work as well or at all. This is because they are trained by the drug manufacturers. If your doctor won't show you YOUR test results find a better doctor, it is your only hope.

Dolorus,
If you were doing good on Cytomel and Armour then maybe you should go back to that, guess you'd have to find another doc who would work with you though. From my own experience in going to two Endocrinologists I can say they would not prescribe Armour, said it was too hard to deal with. As it turned out I didn't need extra T3 as in Armour or Cytomel. I take Synthroid and convert the T4 into T3. Some people are not good converters, maybe you fall into that category and should be taking extra T3? Just a thought.

Lynne,
In the beginning I could go by my TSH level and either lower or increase meds, now that has all changed. I don't go by the TSH anymore, only the FT4. I finally convinced my doc I DID NOT have Hypo or Hyper symptoms as my TSH indicated. I think that is the key...tell you doc you do NOT have symptoms. My TSH indicated I was Hyper and yet my pulse rate was not high and I was not jittery, not losing weight, etc. so he soon agreed with me. I go by how I feel, not by the numbers.

I returned from a doctor visit today with results on my thyroid tests. I have been on Synthroid for the past 30 years. I have a blood test every 6 months to keep it in check. Today, I saw that my TSH went up to 5.43 but my T3 was 0.83 which is below the norm of 0.84-1.72. When she checked my other medications that I take, she said the estrogen pill that I take is probably robbing me of my thyroid medication. I told her that I have been very tired and having weight gain as well. I had no idea that a hormone pill could do that.

In 2006 of April had left thryoid removed because of nodule size of golf ball. Was fine until Sept of 2008, when I started having symptoms of dry skin, fatigue, cold extremities, brittle hair, total exhaustion and weight loss. I immediately went to my Doc. who did the famous TSH---- thyroid had reading of 6.73 then it went down to 0.73- so I was up and down like a yo yo.

This takes its toll on ones body and mental and emotional stability. Sept of 2008 was put on Levoxyl 25MCG every day. After about a month I complained about my joints hurting which I have never had a problem with. I am 74 and never had a problem and of course the Dr. looked at my chart and said, "Well at Your Age" I looked at her and said, don't even go there with that stuff, been hearing this since I turned 60!! Like its no reason or explanation as to why you suddenly start having problems.

I still blame it on the Levoxyl - FDA said it does cause muscle aches and also "ARTHRALGIA" if anyone has any problems with medications they want to know. Its important for them to have this information. On with my story---- my Doctor will not send me to Endocrinologist, why I don't know and I can't go to one on my own! Tried ,you have to be referred by your doctor, how is that for medical practice?!

So I have been switched to Synthroid, same dosage 25 MCG 4 days a week and 50 MCG 3 days a week. Been on this for 2 weeks. I feel no different. Still have the muscle pain and the joint pain---- the pain sometimes is most unbearable and my Doc. wanted me to take pain pills, no thanks, want to solve the problem not add to it. Is there anyone out there that has experienced any of these side effects? If so please write so I don't feel so alone.

Should an FT4 been done? What is the difference between the T3 and T4 test? This is all so new to me that it has become a job to get answers.

What is Cytomel?

Thanks
Help is welcomed.

Helen

After a cursory reading of your article I, find it very inspiring that, attention is now finally being given to this medical problem. I believe that, this will benefit a lot of people suffering from this problem.

Hi, I am also hypo and would suggest you find a more sympathetic doctor and endocrinologist who will listen a little better. Good luck.

Is anyone having memory problems due to their thyroid medication? I've noticed that since I started taking Armour Thyroid in December 2006 that my memory loss has become progressively worse. Now I must take copious notes or I forget most everything.

PEOPLE'S PHARMACY RESPONSE: MEMORY PROBLEMS OR CONFUSION CAN BE SIGNS THAT THE DOSE OF THYROID HORMONE NEEDS ADJUSTMENT.

Armour thyroid has all the ingredients needed for your thyroid to function properly. If you live in a country or have a plan where they do not or will not prescribe it or send you to someone who does you can buy desiccated on the internet (it's cheap) from Canada, and other countries. www.stopthethyroidmaddness.com has all the info. Get informed. You ache on Synthroid and Levoxyl because either you are a poor T4 to T3 converter, the synthetics don't agree with your body or you are not getting the right meds. Armour works.

If you have weird symptoms on Armour you may not be on enough. Poor memory, concentration, cold, feeling tired, achy joints, etc. are ALL thyroid related. Do a google, go to www.aboutthyroid.com (Mary Shomon's site). There are so many sites out there that will help you find a good doc in any country practically.

I went to a new cheap doctor today. He ran a TSH on me and my numbers were above 25.88. He was going to start messing with my medicine-- 175mcg levothyroxd.

I told him i wanted another test, and left his office.

I'm not sure what to do. Can anyone suggest anything? I have no insurance.

58 yr old female on synthroid since 12 years old. Bone Scan was not great. Endocrinologist lowered my synthroid by 7% and this is simply HORRIBLE. Terrible side effects. Weight gain, sluggish, depression, can't remember anything easily. This is not a good Endocrinologist.

Would I rather have not so great bone density scores and feel normal again? Yes. I will have to search for a more open minded Endocrinologist after being on the same dose for 46 years I think he is headed in the wrong direction. I was doing fine before he changed the dose.

I have had a Total Thyroidectomy in 1973 due to a (papillary mixed carcinoma nodules) and had radio active iodine after that. I was 22 years old. My medication is Eltroxin,1mg. (S African brand). I was told to take 3 tablets a day.

I felt fine on that dosage but I find now that I'm older (I'm 59 yrs.old) that I am suffering all sorts of complications and I think it's due to the menopause, eg. depression, weight gain, puffiness and many other complaints. My hormones are all mixed up. I do not know what dosage to take and I have been for so many blood tests and my doctor says I must take one tablet. I don't feel good on one tab, so then I increase the dosage until I feel a little better.

Virginia

I am a 64-year old female that has been diagnosed 2 years ago with low thyroid. I've been on levothyroxine for 2 years. Within an hour of taking it, I begin to ache all over for the rest of the day. In order to get relief I have to take IB.

My doctor says my thyroid levels are ok. I'm thinking about not taking it. I'm over these terrible aches, no energy, itchiness, no appetite and brain fog. The medicine is definitely not helping.

I feel worse now than I did before I was diagnosed. I just don't know what else to do. From all the above comments, it appears the doctors' don't know either.

Thanks.

I had symptoms for years but doctor went by lab results which had me at borderline normal. I was familiar with thyroid and insisted on watching for it as it runs in my family. TSH was finally way off normal and I was put on synthyroid.

Dosage was increased to 50 which had me feeling OK for a couple of years with TSH in the 2.5 range. It is now almost at TSH 4, I'm tired a lot, my cholesterol is suddenly high. Doctor wouldn't raise Synthyroid, but tried me on a statin for cholesterol.

Worst of side effects (severe muscle pain, leg swelling, trouble staying awake, and difficulty urinating) hit while we were away on vacation and away from medical help, so I simply quit taking statin and by the time I was able to get home was much better, so I have no "tests" to prove it.

How do I get my doctor to forget about statins and just try increasing my thyroid med since high cholesterol is tied into low thyroid? (I will NEVER take statins again, talking to a nurse I know I now know I was about to go into kidney failure.) By the way, my cholesterol was only 226 and except for just before I went on synthyroid, it has never been in the 200s before.

My doctor watches different levels and aims at keeping the TSH down close to 1.0. Above that, he says, indicates the body is asking for more thyroid.

I just did a routine test for thyroid. My readings are TSH 5.43 and T4 12.0 The physician who saw me said that it was normal and told me to continue with levothyroxine 50mcg on weekdays and 75mcg on weekends. I continue to feel fatigue, sleepy at anytime, bloated stomach, lots of gas and burps, and hair loss. Please advise me. Thank you.

PEOPLE'S PHARMACY RESPONSE: YOUR TSH IS A BIT HIGH, SUGGESTING YOUR THYROID HORMONE LEVELS ARE TOO LOW. THAT'S WHAT YOUR SYMPTOMS SUGGEST AS WELL.

To Amperia: As I wrote on August 31, my doctor tries to keep my TSH around 1. He says much above that shows the body is calling for more thyroid. Maybe it would be good to find another doctor, one that deals a lot and knows a lot about thyroid, to give you a second opinion. A TSH of 5.43 looks quite high to me; mine was never that high. I think it was around 3 or 4, and I feel better now that it's closer to 1.

Went to cardiologist, he recommended I talk to GP regarding my 0.56 TSH reading, thought I should raise that number. GP told me to cut my 125 mg lovoxyln in 1/2. Had thyroidectomy 20 years ago and never this low dosage and I am frightened to do it.

I had thyroid surgery in 2005, and my right lobe was removed. I have been on Levothyroxin every since. About 6 months ago my blood showed I was getting too much thyroid hormone so my doctor cut the dosage down a little. Then two weeks ago my thyroid hormones were up again and my dosage cut back even more. I am now going to an endocrine doctor and have been diagnosed with Graves Disease, the opposite of hypothyroidism.

I want to know if there a connection between my starting statins exactly a year ago. (Crestor). It seems too much of a coincidence that my thyroid numbers were normal for 7 years, and then within a year of taking Crestor my thyroid numbers have not been normal, and I have gone from hypo to hyperthyroidism. I too have muscle aches but not severe. I have itching, which I never knew until I read these comments above, was related to the thyroid meds. Has anyone else had their numbers change after taking statins?

I've more or less lost 20 years of my life (I'm now 58) to thyroid disease. First subacute viral, then Hashimoto's, then both, then surgery 15 years ago because the Hashi became "fibrous variant". Because I was so sick and 3 biopsies could not procure any tissue to biopsy for possible cancer, my thyroid gland was removed and it was so hardened it took 4 hours to shave it off bit by bit to avoid damaging throat, vocal cords, etc. It was cutting off some of my breathing even.

I thought my levels of thyroid hormones would even out without it and I'd be fine, but in 2 months I felt like hell again and have ever since. I have a good doc, goes by symptoms and T4 and T3 since my TSH is .01 on average for several years now, and something was obviously very wrong. Here's the thing: I read about and asked for an RT3 test last month when time for testing, and WHAM! It was 45.2, which is extremely high. So I'm a poor converter and now know that adrenal function is involved as well as iron, which I do not store unless I take it every day, but do not utilize well at all.

So after 20 years of feeling everything you have all experienced, back and forth and around and around, maybe there is now some hope that things will finally improve with adrenal treatment so that the meds will work like they are supposed to. I went from young through middle age to old and I'll never get that time back, and I don't want other people to be this sick and lose years of their lives, so FIND A DOCTOR that will do an RT3 with the other tests and check your adrenal function and iron.

It is hard, as many of you have discovered, to find such a doctor, but this is your life- Thyroid function runs your metabolism and all other hormones affect and are affected by it. It is all INCREDIBLY complicated and even my Endo doc wasn't doing the right stuff. I've lost hair, memory, bone integrity, social life, creative thought, and pretty much everything else, but I never quit fighting and now maybe something good will finally happen. FIGHT until somebody helps you, because your life depends on it!

I had a total thyroidectomy 2 months back was put on eltroxine 75mg and it was then raised to 100mg . I have severe joint pain, it is like someone is crushing my joints at times cannot lift a cup and couldn't drive, by night time I am limping. It appears like my hands have got bigger? Though my bloods were in the normal range I insisted on having my medication increased to 100mg/125g an alternate days. It's amazing I don't know the life span of the drug but I have been keeping a record of how I feel and on the day I'm due 125mg I wake in agony then about two/three hours after taking it I'm fine.

I wake the next day well, take my 100mg, by mid after noon I'm achy and by evening I'm in agony again and don't sleep. I only upped the med 9 days ago is it too early to up to 125mg everyday or should I give my body a chance to adjust to the new dosage?? Thanks

After 20 years with thyroid disease, first subacute viral thyroiditis, then hashimotos, viral thyroiditis a second time, being overdosed on synthroid by a bad doc to the point of thyroid storm, a total thyroidectomy, dose changes of synthroid frequently, addition of cytomel but overdosed again, then disappearing tsh and a doc who kept lowering my dose to bring it up (that never worked even when I was so hypothyroid I was not functional), I can tell you all one thing because I have been there; do a lot of clinical research.

TSH IS NOT THE ANSWER. If you look up Mary Shomon and find the medically published information on how all this works, you will see why, and that some docs do not believe it and that is why so many are suffering. I finally had a reverse T3 and it was really off. Now I take less synthroid and more cytomel and I have relief and feel pretty normal after 20 years of the same suffering you are all going through. Still no tsh, but it doesn't matter- you need FT3, FT4, and RT3 and antibodies, and your pituitary and adrenals checked out.

Has anyone read the fine print on your synthroid info? It says NOT to initiate thyroid hormone replacement until all known and possible adrenal issues are addressed. I'll bet almost no one has had that done. It's really hard to find a doc who will work with you, and any doc who thinks you must suffer and not have a life to help your bones- well, without a functioning life who needs bones? If you're in bed or unable to exercise because you're so hypothyroid, your bones will get worse anyway. The overdoses got mine, I'm only 58 and they were perfect until a few years ago, but now I can get some exercise and have a life.

Do your research and I mean medical papers, published research etc. Mary Shomon has a newsletter with info and links. Your eyes will be opened, and you don't have to accept staying ill- if your doc won't listen and discuss, find one who will!

Have been on Levothyroxin 125mcg for about a year...(100mcg past 20 yrs) and my dr. tested me and my level is 0.05 and my dr said it is at a critical level...He told me to cut my pills in half and we will see in 6 weeks. I never knew that my thin splitting nails and loss of hair on my arms and legs and memory loss etc...could be due to my thyroid.

This is very disturbing and I would really like to get to the bottom of this. My weight gain has never went down even though I eat little. It's very frustrating and I would love to feel normal again. (I started gaining after 50 and am now 60).

I've taken Synthroid for over 20 years for hypothyroidism and a year ago my doctor lowered my dosage from 175 to 112 because he felt I was having anxiety-type issues from too high levels. However, other doctors diagnosed me with critically low potassium, Vitamin D and B-12 levels so I began taking those. I truly haven't felt "right" since he lowered my Synthroid, and I've gained 17 pounds, have stomach bloating, lethargic, dry skin, etc. Yet when I broach the subject to my doctor he says my levels are "normal."

I'm scared because I know how I feel and truly believe I'm not getting enough Synthroid. How do I convince my doctor without starting all over with a new doctor? I feel we need to at least increase my dosage to 125 to see if it helps.

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