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Mary Shomon

The Thyroid TSH Reference Range: Why The So-Called Experts Are STILL Totally Confused!

By August 14, 2008

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Honestly, it's just mind-boggling. Almost six years ago, laboratory experts, and a committee of the nation's top endocrinologists both came out with recommendations to narrow the TSH reference range so that the high is 2.5 to 3.0, versus 5.0 to 5.5. Since then, we have had study after study linking subclinical/mild/borderline hypothyroidism to a host of health risks, including infertility, high cholesterol, and heart disease.

In the meantime, the TSH test range is still up for debate. Should we lower the TSH reference range as recommended, or shouldn't we? Everyone has their opinions, but what's the latest? Sadly, what we get is more evidence of confusion among endocrinologists, in the form of the article and accompanying editorial in the August 2008 issue of Clinical Thyroidology.

The article on "Lowering the thyrotropin reference limit to 2.5..." makes it clear that the mean and median TSH levels of the population without any thyroid dysfunction are under 2.0., and the percentage of the supposedly normal population who have a TSH level less than 2.5 is "only" 80%. Therefore, they reason, if the upper reference limit was lowered to 2.5, some 10-20% of the population in general (and 35% of those age 70 and above) who have a "normal" thyroid "might" be exposed many to unnecessary levothyroxine therapy.

Then, in an editorial, you have Martin Surks, MD weighing in on this, and explaining that the risk of progressing to hypothyroidism is increased in those who have antithyroid antibodies, adding that "since nearly 80% of subjects with TSH levels between 3.0 and 5.0 mIU/L do not have antithyroid antibodies, it is likely that the large majority of people with TSH in that range have little risk for the development of hypothyroidism."

Surks has been on this bandwagon before, and was apparently just as misguided back then. See my 2004 article Debate Over Subclinical Thyroid Disease Continues.

I theoretically understand the reluctance to change the official reference range. If you change it, then it nearly mandates treatment for anyone who falls outside that range. Why give treatment to those who don't need it? And, in some people, especially the elderly, unnecessary thyroid treatment may even cause additional health problems.

Endocrinologists will tell you that it's not all that rigid anyway, and that they use some common sense when evaluating people who are subclinical, and have the freedom to make judgments. But the truth is, most American's will never see an endocrinologist for their thyroid condition. There is such a shortage of endocrinologists that there is only one endo for every 40,000 Americans! Most of us see GPs, or family doctors, or internists. And what the endocrinologists just aren't understanding is that by leaving the reference range where it is, it becomes a rigid barrier of ignorance that most doctors use as their hard-and-fast rule for diagnosis and treatment.

Inability to make subtle diagnosis prevents patients who need it from getting thyroid treatment. For example, a woman with thyroid symptoms, a family history of thyroid problems, and a TSH of 4.5 may be adamantly refused thyroid treatment, and told by her family doc, ob-gyn or internist that her thyroid is "normal" because it's in the so-called normal range. Yet, if that woman is also trying to conceive, failing to treat her elevated TSH level may be the difference between infertility and/or miscarriage, and a healthy pregnancy.

What about the risk that these elevated subclinical TSH levels present for other conditions besides hypothyroidism? Conditions like heart disease, metabolic syndrome, high cholesterol, and more. Just last week, I reported on a study that found that women with TSH levels above 2.1 were at increased risk of Alzheimer's disease. Frankly, I'm fed up. Here is just a partial list of some of the articles about the risks of subclinical thyroid disease from here at the site. Each one of these articles cites respeced journals. Aren't these doctors reading?

You can read the August 2008 issue of Clinical Thyroidology online, in PDF format by going to the site.

SHARE YOUR THOUGHTS!

What do you think the TSH normal range should be? Should it be the .3 to 3.0 that AACE and the laboratory experts recommended back in 2002? ( What are they waiting for already?) or should they keep it at 0.5 to 5.0. (After all, they shouldn't accidentally treat anyone, even if that means they refuse to treat millions.)

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Comments
August 15, 2008 at 3:48 am
(1) Lili says:

Why all this bickering about TSH ? How are they going to treat people ‘accidentally’ ? Have they never heard of the FT4 and FT3 tests ? Don’t they know anything about symptoms ??? If the person was treated as a whole and not as a set of lab values, we wouldn’t be having this discussion. It’s time doctors started to realise that patients are people, human beings just like themselves, and not idiot machines ! It’s time they started listening to their patients and – brand new concept ! – LOOKING at them !!! All hormone defiencies manifest physical signs, if they were educated to recognise them we’d all be better off.

August 15, 2008 at 9:00 am
(2) Claudia says:

I still don’t understand how TSH levels became the “gold standard” and the only test many doctors use. I was on a rollercoaster of thyroid meds for 5 years because of that test. My TSH was up…up went my dose….my TSH was down…down went my dose. When they did check my FT4, it was still low even when my TSH was under 2. For 5 years, I played this game and never felt right. I am so fortunate to have finally found a physician who treats based on symptoms. I have felt better in the past 2 years since I have began seeing him than I have in the past decade. He hasn’t changed my dose once or used the TSH test. Other docs were changing it every 3 mo based on TSH results.

August 15, 2008 at 9:01 am
(3) Molly says:

My doctor seems to go by the hard and fast rule of TSH levels being in the higher range. When I still live with symptoms I have to assert myself and practically force her to give me a blood test.
I don’t care, I will continue to do that and I say to everyone, be as assertive as you need to be… and if the Doc has a problem with it, find a new one.

August 15, 2008 at 10:23 am
(4) Debbie says:

I have been fighting thyroid disease for 21 years since the birth of my daughter. The only time I have felt normal, been able to lose weight and be symptom free was when my TSH was 1.39 to a 2.50, even on the low TSH, I would develop after about 6 months, a resistance to the medicine and would be switched and start all over again. It has been a viscous cycle. My Doctor recently told me, I was over his GP ability to treat me and I knew more about the disease than he did, he is treating me one more go around and if I do not level out, he is ending me to Duke. I do not for the record agree with ranges of 0.5 to 5.0, it is to broad and I am a living example of what happens when you get in the 5 range as I call it, I lose my hair, I do not sweat, dry skin, brittle nails, cystic breast, IBS, irregular cycle, migraines, anemic, low energy and the dreaded fatigue monster, inability to concentrate, to stay focused, forgetfulness, high and low mood swings, cystic acne, shortness of breath, allergic reactions, ringing of the ears, sinus infections, warm flushing of the legs, swelling and poor circulation in legs, ankles, and hands, puffiness in face and eyelids, sleep apnea, and oh yea, the worst one to me, is the inability to lose even 1 pound. I am educated, I am a smart eater, I exercise, and I weigh 300. Not by choice. So in summarization, the so called experts need to listen to their patients, and keep the TSH levels in the 3 range and treat each patient symptomatically and as an individual, it is clear in my family, as I have 2 sisters with Hypo, that what works for one sister does not work for the other. The same doctor, with a different regiment, treats us all.

Thank you,
Debbie- North Carolina

August 15, 2008 at 12:39 pm
(5) lynne says:

my tsh was .03 recently; one doctor said to lower dose to prevent synthroid making my osteoporosis worse; my other doctor agreed to lower my synthroid to .175 to .150 when i told him what rhumatologist suggested. he kept saying that my thyroid was not reason for my weight loss!! since jan. i have gained 5 lbs each month!! they also found a pituatary tumor that is benign and said my thyroid is shut down; now he is backsteping on this opinion and says my zoloft is reason for wt. gain. any comments–you seem to “know your body” and have experience with up and downs with thyroid. thanks!!

August 15, 2008 at 12:50 pm
(6) Ed Arnold says:

The quote from Martin Surks MD was breath-taking. He is quoted as saying “nearly 80% of subjects with TSH levels between 3.0 and 5.0 do not have antithyroid antibodies”. HELLO? Autoimmunity is the LEADING cause of hypothyroidism. Where does Surks get his info??

I can only assume this comment exposes the abysmal ignorance of the medical profession WRT aggressively testing for autoimmunity, searching for food and environmental triggers of it, and treating it (e.g. low-dose naltrexone therapy).

August 15, 2008 at 1:19 pm
(7) Lynn says:

It all comes down to a real lack of empathy and arrogance.

How many asymptomatic patients get tested for TSH anyway?

And, why in the world would anyone be concerned about unnecessarily treating asymptomatic patients without complaints related to thyroid function when THE REALITY, let me say that again, THE REALITY is the problem is that not enough symptomatic patients in desperate need of treatment get it?

This Surks guy sounds like a megalomaniac who is just taking his position to be contrary.

Physicians are service providers–heavy emphasis on SERVICE. If I treated my clients the way physicians like Surks treat their patients I would have been out of business long ago. So I say it’s time to put them out of business.

I don’t return to any physician who does not listen and hear what I have to say and who bases every decision on numbers in isolation from me and what I’m saying. I urge others to do the same. It takes a while, but eventually you will find someone who will listen, who cares and who is a real doctor. Don’t ever give up or settle for less.

August 15, 2008 at 2:42 pm
(8) Gina says:

The symptoms should be the main diagnostic tool and also the way a patient looks. It is quite easy for a doctor from just talking to the patient and looking at them to tell if they are hypothyroid. When I look at photos of myself back in the pre treatment stage, I look hypothyroid! The symptoms also were so obvious. You are not just depressed, tired and fat! I am sick of reading doctors comments when they say they cannot give thyroxine to everyone who is depressed, tired and overweight. Those were not the only symptoms I went to my doctor with what about general hair loss, debilitating tiredness, the freezing cold shivers, memory problems, fuzzy head etc etc I could go on and on. Put those symptoms together with the results and T4! You may then get a diagnosis. If someone then comes in with high TSH and is feeling fine well why treat obviously a high TSH is right for them. We are all individuals! Why do they find this so hard to understand, I thought Doctors were supposed to be clever people?

August 15, 2008 at 4:45 pm
(9) Joe says:

Thyroid treatment should not be by TSH Alone, and it should be noted that 5 and above is a number and may not relate to EVERYONE. I run a TSH of 10-27 under treatment (as low a 10 only once, usually 22-27) and 7-12 without treatment. Now FT4, FT3, T3 and T4 are close to normal untreated (sometimes FT4 will be .1 below normal with T3 in mid range). Recent treatment resulted in TSH 10.98, FT4 1.83, FT3 2.79, and TT3 1.11. I had another test where TSH was 14.15, TT3 was 1.43, and FT4 wqs .97 all of these except TSH are in the normal range. This I am a male, and most information is related to females having problems. I failed to mention that under treatment, I also start having Hypothyroid symptoms, that reside approximately three weeks after removal from treatment. I personally feel, that TSH and thyroid numbers are over rated,if symptoms and test correspond, by all means seek treatment. If your doctor prescribes treatment, note differences in symptoms, if improving, by all means continue, but if other symptoms of if the symptoms are increased, consider talking to your doctor and have him experiment treatments. My doctor is using the monitoring method only, as noted by the values, treatment appears to aggreviate the condition, which is not what the intent is. We consider that a TSH of 10 – 17 is my normal range, which is about 3 times higher than the set range. It is also the range that I have the most energy and feel my best. Oh, they also have problems with my temperature range, temperatures above 60 casues sluggish feelings, but comfortable and best energy are at temperature between 47-56 degrees, my body senses a temperature increase when while in that low range, after 57 degrees, temp if hot and feels like 100 no matter what the temp is. So my recommendation is work with your doctor, look for second opinions, if things seem not to be improving. Last, be honest with your doctor, some people tend be quiet as to not upset them. I have been through about 6 general practioners, and basically fired a gasteric, endocrynologist, and nutruitionist. If you have questions, ask, if they should know the answer, change doctors, if they don’t listen, change doctors, if they work with you and sometimes look outside the box, they may be a keeper. In all, numbers are numbers, they are set for AVERAGE, if you do the math, you may be on the upper portion that keeps that upper number there, or the lower portion that lowers both the upper and lower numbers. QUALITY OF LIFE is first and foremost!!

August 15, 2008 at 5:10 pm
(10) Bettte says:

I have hypopituitarism. My anterior pituitary chooses not to produce TSH. Since the move to making TSH the be-all and end-all of thyroid treatment, I’m toast. Hypopituitarism means the whole endocrine system is in a tizzy. I’m trying to find a doctor who doesn’t think I talk about hypituitarism as an attention-getting device, but as my reality. No luck so far.

August 15, 2008 at 7:18 pm
(11) Theresa says:

Just a week ago, I arrived at my doctor’s office because they had called 10 days previously asking me to come in to discuss my recent blood work. For the first time in a long time, we had checked blood glucose, B-12, calcium, CBC, ferritin, and the first time ever checked lipids, cholesterol,etc., not to mention TSH and Free T3. (My doctor has started checking T3 at my insistence, since I believed the TSH to be USELESS). I was a little panicked, what if I’m becoming diabetic, or what if I have high cholesterol?

Low and behold, the only concern was my ultra-low TSH of 0.04 (range = 0.4 – 5.25). When the TSH is outside “normal range”, the lab automatically tests Free T4, which was 19.2 (range = 10.3 – 25.7). My Free T3 was 2.2 (range = 1.2 – 3.4). These numbers actually suggest room for improvement, hormone-wise, not hyperthyroidism, as suggested by the “gold standard” TSH test! I took the opportunity to mention to my doctor “that’s why I have no faith in the TSH!

He asked if I have trouble sleeping (no, but trouble getting to bed early enough, with summer vacation for my university student son home for the summer and staying out late most nights). Any weight loss, he asked (only a couple of pounds from grieving after losing my beloved little cat of 1 1/2 years to feline infectious peritonitis – another sad story). I expressed my disappointment with the difficulty still to lose weight, despite working out fairly regularly since January. He didn’t threaten to lower my dose of desiccated thyroid, as I feared, and wrote a lab slip for TSH and Free T3 to be checked in January. He’s learning! He initially resisted when I asked about treatment with T3, but my endocrinologist started my on a low dose of desiccated thyroid almost 2 years ago, and it’s taken all this time to get to this level (usually I have to take the bull by the horns and take more pills, then see how the levels are when I get blood testing).

It’s obvious to me that the TSH is totally USELESS!! Maybe if enough patients push their doctors and take matters into their own hands, they will see the results. This seems to be a grassroots movement, and surely someone must be paying attention!

August 15, 2008 at 8:09 pm
(12) Ira Verwoert says:

Just read your last message:…

women with TSH levels above 2.1 were at increased risk of Alzheimer’s disease.

Also just received info on:..women with suppressed TSH
1) due to medications like e.g. Armour Thyroid for treating Hashimoto’s disease,or
2) treatment with thyroid hormones for thyroid cancer..

..etc. etc..

They (including ME…) are apparently ALSO under threat of acquiring premature onset of Alzheimers!…

So it seems,..we can NOT win!…Either way, we will ALL be tackled by Alzheimers,…lulled into ‘a false sense of security’ by feeling reasonably well, on the medications subscribed at this moment!

Would LOVE to hear reactions from kindred spirits and/or Mary Shomon..

Please forgive my poor state of English (NOT my mother language..)

Sincerely,
Ira Verwoert
The Netherlands

August 16, 2008 at 1:39 am
(13) Mary says:

For me the TSH test is useless. For about 35 years I had every hypo symptom there is and my TSH was always 1.8… it NEVER changed. Finally an internal medicine doctor last July tested my FT3 and FT4, both were subnormal. The endo I went to tested only TSH and pronounced me “fine” even after I presented
him with the FT3 and FT4 tests from the other doctor.

Turns out hemmorhage at child birth partially damaged the outer layer of my pituitary. It was pumping out as much as it could. I ended up with a nodule the size of a golf ball, years of Hashi’s and thyroid cancer before I got any attention beyond “it’s all in your head”.

To get RAI I had to have thyrogen shots because my TSH would not go up.

August 16, 2008 at 9:08 am
(14) Diana Danielson says:

Treating patients based on the current ranges of TSH. FT3 and T4 levels has obviously not worked.
Reading the posted comments makes me sad and angry. What will it take to get thyroid functioning research that correlates a patient’s “feeling-well” with treatment?

August 18, 2008 at 3:05 am
(15) SV says:

I dont understand why people keep talking about TSH – I think it is the least important thing to measure – it should be 1) antibodies 2) free T4 and T3.
I do not think the normal reference range for TSH should be changed – it makes no sense. When doctors are facing the fact that TSH is not directly correlated with thyroid disease or the severity of thyroid disease, than the response should be to abolish the TSH test!!! To change the normal reference ranges and desperately try to hang on to the test is not intelligent…I have atrophy of the thyroid gland while having a TSH of 3.1 but that does not mean that I think doctors should do what big pharma wants and order more TSH tests and practically add synthetic thyroid hormones to drinking water. Everyone with thyroid SYMPTOMS should be treated, regardless of whether TSH is 1.0 or 250.0.

August 18, 2008 at 1:00 pm
(16) TallTonia says:

I think you are misinterpreting the study. They are merely setting reference limits of TSH in an asymptomatic population. So if someone has no symptoms of hypothyroidism and a TSH of 4.5 then no futher consideration is required until they are symptomatic or their TSH level increases. If they are asymptomatic with a TSH of 5.5 then further tests and evaluations many be warranted.

There is nothing in the study that recommends that symptomatic patients within the reference range be discounted. Nor is there anything that says if hypothyroidism is confirmed that the goal should be to reduce the TSH to somewhere within the reference range. If physicians are applying these interpretations, they are doing so in error as that was no the hypothesis that was tested and there is nothing within the study design to make it possible to draw these conclusions.

There is a difference between diagnosing or treating symptomatic patients and using TSH as a tool for screening the healthy population for potential disease, in aw old with limited resources. This study basically says in a population with no symptoms of a disease, the possibility of missing a diagnosis of someone having the disease is very slim if the TSH is within the reference range. There will be physicians that read something else into this.

August 19, 2008 at 8:36 pm
(17) GAIL says:

I have finally been blessed with a wonderful doctor. TSH levels are just a small part of the puzzle. He also treats by physical symptoms and your body temperature. Most people with hypothyroidism and Hashimotos also have high cholesterol, high sugar, and low early morning body temperature. Also, other doctors I went to would only put me on synthetic thyroid which did nothing for me. This doctor put me on Armour, which I would highly recommend. Also, a number of natural supplements. Because I mentioned that I always felt I had a hormone imbalance (infertility, fibroids, endometriosis and now close to menopause), he tested me and I am also now on progesterone. Boy, what a difference! I feel 100% better. I have energy again and I’m starting to do some of the hobbies I gave up when I was so tied all the time. I can garden again and work around the house, even after a long day at work. My hair is also coming back and I am also not depressed anymore. Along with researching hypothyroidism, read the book “What your doctor may not tell you about Menopause” by John R. Lee, M.D. Even if you are not near menopause it is still a good book to read about progesterone and it’s link to hypothyroidism. By the way, twenty years ago after years of infertility I took progesterone for two months and got pregnant.

August 20, 2008 at 7:01 pm
(18) Victoria says:

My TSH is “only” 4 and therefore “in range.” However, when my free T4 was on the low end and I asked for further testing. When those tests came back I found that my free T3 was in the basement! I just started levothyroxine tablets and am hoping I start feeling better soon. I am tired physically and tired of having a non-existent metabolism.

August 21, 2008 at 4:42 pm
(19) Tim says:

I believe endo’s should be treating people by how they feel almost solely. My TSH runs .0001 and if I even come close to normal TSH ranges I crash and can’t think straight become cold and just want to sleep. My FT4 and FT3 run slightly elevated from norm lab results. As long as my heart rate remains normal and I am without hyper s/s my endo allows me to run a depressed TSH. This is how it should be. Going on how people feel not what the lab says they should do.

August 26, 2008 at 11:15 pm
(20) Browynnath says:

All I know is that my doctor has been checking mine since I was 5 and it was finally diagnosed 7 years ago and still can’t get it right (so it seems to me…). Thanks for this great font of information here! It is SO much appreciated and very informative. Thanks again!

August 27, 2008 at 12:53 pm
(21) Judith Franklin says:

the TSH test should be at 0.1-2.0. most of us are at 1.0 or below, so why is their so much
talk on it. the test is flawed and that is a fact, they should not use it at all. the only test you need is FT3 and tpoab. as we all have thyroid problems because it is being distroyed
and that is also a fact.I have an auto-immune
disease not a thyroid disease.

November 1, 2008 at 5:15 pm
(22) Leesa Irida says:

TallTonia – re comment above – yes you are correct however the problem is that doctors apply the range to symptomatic individuals when it should be just used to monitor potential future problems in asymptomatic individuals. For whatever reason, many doctors are convinced that the TSH is the be-all and end-all of diagnosing thyroid problems even when someone turns up highly symptomatic.

November 7, 2008 at 5:22 am
(23) polygonum says:

Can anyone find a properly designed and run study that validates use of TSH for treatment (i.e. monitoring levothyroxine dose)?

It seems to me that although it “seems a reasonable idea”, it has never been properly validated. Of course, there are those in whom it is very obviously wrong. But there are probably many in whom it looks reasonable but is just a bit out – thus preventing the person from ever having the dose adjustment they need to feel well again.

November 7, 2008 at 9:25 am
(24) Tom S says:

I think Dr. David Derry’s comments regarding the TSH test said it best in response to the article Thyroid function tests time for a reassessment BMJ 2000;320:1332-1334 ( 13 May )

Consequences of the TSH

David M Derry,
Former Assistant professor of Pharmacology University of Toronto
305 Goldstream Av. Victoria

In 1973 Thyroidologists officially endorsed the newly designed TSH test for thyroid function. Since I was trained prior to this meeting my clinical knowledge of how to diagnose hypothyroidism seemed anachronistic. However watching patients with all the symptoms of low thyroid taking years or decades to show a raised TSH for what was clinically obvious has been enlightening. Yes, the TSH may eventually rise but not necessarily. But, treatment of the clinical symptoms has always been effective regardless of the TSH. Following behind me has been a generation of medically trained doctors without any knowledge of the art of diagnosis of hypothyroidism. Current GP’s are unable to diagnose any form of low thyroid condition without a laboratory test.

The TSH test caused the appearance six years later of chronic fatigue and fibromyalgia. It also lead to a generation of medical students who did not recognize that chronic fatigue and fibromyalgia are classic symptoms of low thyroid as are well discussed in the text-books of the 1930s. It has been my experience, which is the same as that of George Crile’s testbook in 1930 (1), that if diagnose low thyroid early the symptoms of low thyroid including chronic fatigue and fibromyalgia completely disappear. But if it is missed for a number of years then the condition is more difficult to reverse. We now have 27 years with the TSH and many people have been permanently disabled by the inability and hesitancy of the current GP’s and Endocrinologists to clinically commit themselves to the diagnosis of hypothyroidism and as discussed below treat adequately.

There is a further difficulty created by the TSH and that is the treatment of hypothyroidism has been linked to the TSH value. As we know from Dr. A.D. Toft(2),(See letter of reply) except at extremes there is no relationship of signs and symptoms to the TSH value. What has been the point in teaching medical students to follow this test? Moribund patients are being treated with doses of thyroid which are too low because of the extreme sensitivity of the TSH to exogenous thyroid hormone. Before the TSH test arrived, the normal amount of thyroid used by the medical profession world wide after 80 years of clinical experience was between 200 and 400 micrograms of thyroxine. The current levels dictated by the TSH value have average about 75 to 100 micrograms. This is 1/3 the dose which will make a patient feel normal again. Therefore even if the chronic fatigue patient does have a raised TSH, the treatment has been inadequate.

Thyroid hormone remains one of the safest therapeutic agents that came out of the 1800′s. Aspirin which also came from that era has caused huge numbers of deaths from overdose whereas thyroid hormone has yet to record a death from acute overdose. All the scare about osteoporosis was unfounded. There has not been a documented case of thyroid hormone use being related to osteoporosis. The hesitancy to use thyroid hormone has been established and perpetuated by the TSH test.

1. Crille, G. and associates. Diagnosis and Treatment of Diseases of the Thyroid Gland 1932 Pages 86-100.
2. Toft,A.D. Throtropin:Assay, Secretory Physiology, and Testing of Regulation. Werner and Ingbar’s The Thyroid A fundamental and clinical text. Sixth Edition Eds. Braverman, L.E., Utiger, R.D. J.B. Lippincott Company, London, 1991. Page 294

November 7, 2008 at 10:14 am
(25) Emily says:

I had to “educate” my GP about the AACE ranges, as I was normal according to him, but I had gone back to my endo when I started having problems again and she upped my Levoxyl dosage. I don’t know if that helped, but I actually brought the AACE scale with me to the GP to show him!

November 7, 2008 at 10:15 am
(26) mrs J franklin says:

the only tests we need is the FT3, RT3 and TPOab
this last one is not often done. only if your TSH is very high,which is to late as at 10.0
the gland will only be half alive and at 20.0
it will be dead.the TSH don`t pick up sub-clinical hypo.and it is a lie that we don`t all have auto-antibodies.if not in blood they will be in the thyroid itself.

November 7, 2008 at 10:29 am
(27) Ali C, says:

I have had Hashimoto’s for a long time, and my PA discovered it about 4 yrs. ago. Most doctors don’t have a wide knowledge of hypothyriodism, and as another writer mentioned, sometimes we know more than they do. Not arrogance, just that we have the time to read all the lit. that is out there. I finally convinced my doc. to let me try Armour Thyroid, and I certainly felt much better than when I was on the Synthroid. Now we are trying to get the right dosage, although my doc. is still fighting the mental battle of going along with the TSH reading. I have porinted out volumes of reading material for him, and finally bought a copy of “Hypothyroidism-The Unsuspected Illness”written by Dr. Broda Barnes. You can get a copy off Amazon. The book is a mindblower. I can’t believe that the medical community can completely disregard 50 years of work by a dedicated physician. The doc. should use the Barnes Basal Temperature Test for checking the thyroid. You will find that it is a very accurate way of determining thyroid activity. The higher the dosage takes your temp., the better you will feel. Even my brainy husband that usually pooh poohs “older” written material was amazed at this book. You’ll NEVER regret getting a copy, even if you must take it to your doc for him/her to read. If they won’t take the time to read it, find another doc. There are too many of us thyroid troubled atients walking around that have been told that they are ok, when they are not! We must try and help ourselves. I’m still trying to get my doc. to raise my dosage, but at least I’m not falling apart anymore. My weight hasn’t budged a bit, as it did last summer when for a short time he prescribed the dosage I now am taking. He got scared when my TSH dropped “too low” and lowered my dosage. I was a mess again. But I suspect now that I am going to need an even higher dosage. My basal temp. has risen from 96.6 to 97 on my current dosage. But, I’m hopeful that with the book and my pleadings, I will eventually get completely better. Good luck to you all!

November 7, 2008 at 12:37 pm
(28) Anna says:

I was one of those women with many hypothyroid symptoms and multiple TSH tests over ten years (ages 34-44), with results always in the upper end of the “normal” reference range (slowly increasing in that time period, too). My lab used the old reference range. I was told the test ruled out thyroid conditions and I was offered multiple medications for symptoms, infertility treatments and surgery instead.

Finally, I learned more about thyroid conditions from this website and books, “connected the dots”, and after yet another unproductive visit to my primary care doctor (she told me to get used to old age – I was 44 yo!), I went outside my HMO network (actually across the country from my CA location) and paid out-of-pocket to see a top doc recommended on this site, Dr. Kenneth Blanchard in MA. He got me feeling and functioning much, much better. Too much time was lost to attempt resolve the infertility by that time, as I was into my mid-40s, so I just have to accept that.

Now I’m seeing an endocrinologist and a PCP in my HMO who is much better than the former PCP (I fired her) and I’m getting the treatment I need in my HMO (though the endo doesn’t have the knowledge or inclination to prescribe compounded thyroid Rx).

A few months ago while I was in the lab getting routine blood work taken care of, I asked to speak to the lab supervisor. I asked about the their TSH test and reference range. He assured me that their machines were the latest technology and very accurate (machine A results will match machine B results with the same sample). I explained that wasn’t the issue, that the inclusion of higher TSH values in the reference range meant that symptomatic patients were being denied treatment. He hadn’t even heard of the AACE’s and NACL’s most recently recommended range (more than 5 years earlier!). He took down the info I gave him and said he would look into it. I didn’t expect anything to come of it, but I felt better for having spoken up.

I was pleasantly surprised to see that the upper value of the TSH reference range had been adjusted downward the next time I had blood drawn! At 3.6, isn’t as low as the AACE or NACL recommendation, but it is a big improvement over the previous upper limit of 5.5. I don’t know if my talk with the lab supervisor had anything to do with the change or not, but I’d like to think it did. Of course, I made sure to approach him as a knowledgeable and rational patient, and as one who appreciates the lab’s hard work on behalf of patients. You know, “honey” rather than “vinegar”. :-)

November 7, 2008 at 9:13 pm
(29) Christine says:

I have not had much luck with endocrinologists. In my part of the world, it is still not easy to find a good one. I have had normal TSH readings, but docs still think I am OK. I have had both thyroidectomies, so everything has gone downhill. My meds (100 mcg Eltroxin) dont seem to help. Doctors seem to think that the TSH is still the gold standard . Meanwhile, have they asked us,
the patients? I hope the changes come really soon.

November 8, 2008 at 11:29 pm
(30) Willa says:

I’ve had Hashi now for 8 years, in the beginning my TSH was an indicator in how much I needed to adjust meds. I now find that is no longer the case. While my TSH is well below normal then the FT4 is just a bit over midrange, I feel better when the FT4 is closer to the high end of the range. My new doc goes more by the TSH, when I go back for labs I know we are going to have a fight about TSH versus FT4. I go by the FT4 and NOT by the TSH. If I don’t have Hyper symptoms because of a low TSH then why in the world would I want to adjust meds? It is AMAZING how many doc’s know nothing about thyroid disease. My new doc is supposed to be the best in this area and yet he goes more by the TSH test.

November 10, 2008 at 1:47 pm
(31) Cpol says:

I have to say I find it utterly utterly ASTOUNDING that a range as high as 5 is ewven being remotely considered as the upper TSH.
Here in most EU countries the reference is 0.3 to 3.0 and anythign over 4.5 wuld ring ijmediate alarm belkls even for a junior doctro or intern!
I personally don’t feel normal – not goood or anythign, just normal with a level above 1.27 and I have some symptoms of hypo below 1.0. My doc is aware of this an adheres to it.
I also have poor conersion and am doing exellently on 400 mg of eltroxin taken at night and my cholesterol astonished my GP as it ius return as low 2.9!!!!!!!! at my last visit :-)

September 11, 2010 at 9:57 am
(32) Diana says:

I didn’t read every single comment, but the ones I read said nothing of iodine. Iodine can cure Hashimotos and is also needed for most other thyroid issues. Also, too much fluoride is bad for the thyroid.

August 7, 2011 at 11:06 pm
(33) Katherine says:

I just had my blood work done and my numbers were as follows:TSH 3.23 and t4FREE .90. Three months later the numbers are 3.82 and .97. I was feeling very tired all the time, my hair did not feel right, I had trouble sleeping and remembering things and could not lose weight. During the 3 months between test I started on an herbal regimen and began feeling better, lost a little weight, but gained about half back. With my numbers where they are now, is there reason for me to be concerned, should I be taking medication?

June 28, 2012 at 2:03 pm
(34) Jane Jones says:

I am confused about my hypothyroidism. At 56 years old, I have always felt great! Energetic and have no symptoms at all, except that I’ve always had more trouble losing weight than the average person. That is why my doctor tested me. My TSH number was 9! Not good. So I’m on medication now for it. But I hate to take meds I don’t think I need. I eat extremely healthy with regular exercise. And just before being put on the meds, I spent tha last 4 months losing 1 lb. a week to equal 19 lbs.! My cholesterol is under 200. I still don’t understand why I have to be on the medication. Thoughts?

July 30, 2012 at 3:10 pm
(35) Kathy says:

Since this article was posted in 2008, I have no idea whether, Ms. Shomon, you have any updated information, but if you do, I would love to see it.

I have had hypothyroidism for quite some time, and have been successfully treated in the past with Armour thyroid. However, I experienced a slew of problems twice when my dose of Armour became unavailable, and then all doses, when the manufacturer apparently found it necessary to add a binding ingredient to the medication.

For the last several months, I have begun to feel that mentally and physically, I function better than I have in years, despite having R.A.,, fibromyalgia and M.E. But a recent blood test showed that my TSH is low, while my T3 and T4 are normal.

I have no symptoms of hyperthyroidism, but I presume they will come. Or my physician or his nurse practitioner will reduce my current dose of Armour, hopefully not resulting in a decline in my mental and physical progress.

Many of the symptoms Debbie listed — hair loss, migraines, anemia, low to no energy, stamina and endurance; inability to concentrate and focus, problems with memory, mood swings, acne, shortness of breath, ringing in the ears, sinus infections, swelling and poor circulation in legs, ankles, and hands; and inability to lose weight — I experience when my TSH is higher. I don’t understand this at all, since the higher TSH supposedly indicates that one is hyperthyroid.

If I am now hyperthyroid (with low TSH), wouldn’t my body be more “revved up” than it is? Or could it be that my feeling better, nearer to normal, is a result of my slowly becoming hyperthyroid? This is very discouraging. I dread returning to a higher TSH and a life spent in bed wearing a sweater because I feel so cold.

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