I copy this from Web MD and I'm sure they wouldn't mind if I pasted a post here. I have had some serious problems taking thryoid medication and the Doctor there has answer several of my posts. My endo before last had a fit when I ask him to do more then a TSH, he finally agree, but said he would order them just becasue I was making such a fuss. Anyway here is a answer from Web MD on the subject>>>The credit goes to >> by Sky_Eagle1 (WebMD), on 2/25/2003 4:14:12 PM NEW! You should have more than the TSH done. TSH is not an accurate indicator to use alone for initial diagnosis of a thyroid problem. Furthermore, TSH alone is not an accurate indicator of general thyroid health and shouldn't be used in adjusting hormone levels of a person who is receiving treatment for thyorid conditions.
You should be asking why he is only using TSH as an indicator of your thyroid health and not Free T3 or Free T4 tests. TSH is a very bad indicator to use for thyroid health, since it does not measure the activity of the thyroid, but the activity of the pituitary gland.
Furthermore, I would find out how your symptoms are considered or if this is purely a doctor in love with his lab sheets and is treating your lab sheets instead of you.
If you don't get a good answer to either question (especially YOUR request you should make for those Free T3 and Free T4 tests - blood tests never harmed anyone to have done, if your doctor objects this should be a sure sign to find someone else), find another doctor and quick. You probably have a bad one there from what it sounds and I can believe it too.
As far as your condition goes, once you are able to get those tests, please post that along with your age, sex, and time period you had your thyroid taken out (how long ago) back and I'm sure you'll be able to get a decent amount of opinion.
Endocrinologists are by and far the worst doctors I've heard about over time when it comes to successfully treating thyroid disorders. Usually most (and approaching all) subscribe to the false and simplistic "bugs and drugs" story taught in medical schools for most part. Yes I am presenting the pure hard textbook line here - you can tell "textbook doctors" from "clinical doctors" by the utterances or absence of utterances of lines similar to the following. Clue: every statement below is FALSE FALSE FALSE, which as a referesher is the "bugs and drugs" story I mention:
1) Thyroid disease is a easily found and easily curable disease.
2) Thyroid disease is discovered and treated only by the basis of the "almighty and infallible TSH test" Any deviation from the sole use of the TSH test in diagnosing and treating thyroid disorders is unacceptable.
3) Anyone who is not within the published acceptable levels (.5-5.5) is considered completely normal and any symptoms they are having are from other disorders or are as a result of "mental conditions" or "the slob-like status of the person".
3a) Those who have a TSH higher than the norm must be granted use of only synthetic T4 and only "Super Synthroid" because it is the only deemed safe and effective drug. Any deviation from this course is wholly unacceptable, since T3 and natural thyroid is completely and totally dangerous because it causes hyperthyroidism and osteoperosis. And yes, I use the word "granted" above because that is really all the doctor is doing legally - and why I agree with Dr. Rush, this is despotic. You mean I don't have a choice in treatments when one exists?
3b) Those who have a TSH lower than the norm must be immediately informed of the dangers of hyperthyroidism and offered one of two treatments, each involving destroying the thyroid gland (surgery and RAI). The patient's thyroid is evilly producing more thyroid hormone than necessary so some of it must be destroyed to save the patient from a lifetime of problems. Then see Item #2 after the procedure is done for diagnosis of the hypothyroidism that will cause this patient a lifetime of problems.
4) Upon treatment with Synthroid, enough is given to only bring their TSH back to normal levels. Any deviation from this will cause
And talking seriously about 3b, no doctor even bothers to find out exactly WHY the thyroid is overproducing and cure that. As one could always say, doctors believe we have too many organs and are on too few medications...there are no altruistic goals in medicine anymore...unless money and profit are altruistic...
When will the medical establishment get serious about the treatment of thyroid disorders?
I think its a "hunt and peck" sort of thing when looking for a doc, sometimes you can get lucky and find a good one and sometimes it takes a lot of hunting and pecking through the idiots to find the right one.
There are good ones out there, but far more bad ones who don't really care and are treating the lab sheets.
I hear you Dea>>My last Endo got out his text book and YES his calculator and tried to dose me by my weight. He said I needed to be on .125, at that time I was on .1mg and just three weeks ago I was lower to .88.
This Endo is at a major medical center and I will not going back to see him! He haven't even order any blood work and didn't care how I felt. He said all my symptoms where do to anxiety since I had a history of taking anti-depressents. What a jerk, I took one for three months after my Mother died four years ago. He dug deep to get that info! He called my GP and said I was having symptoms of depression and anxiety. My GP told him I wasn't depressed and my anxiety was due to taking to much synthroid. Endo told him if he knew so much about throid problems then why didn't he treat me, he said if we don't keep her TSH low her cancer WILL return and would he be responded for that???>>>Like I said before WHAT A JERK!
I posted this to the Information Archive thread quite sometime ago, but it bears repeating:
A friend posted this fantastic list of questions that she composed to another message board. I asked her if I could post it here, and this is her gracious response: "You can use it as much as you want. Power to the patient! ... 'Nette"
Here's the list:
a. What is your approach to treating hypo?
Desired answer: treatment is based on a combination of symptoms and lab tests. (What lab tests? TSH, antibodies (once is usually enough), free or total T3 and free T4 are good places to start).
b. What medications do you use in treatment of hypo?
Desired answer: whatever if takes. Some of those available are Synthroid, Thyrolar, Cytomel and natural meds like Armour.
Wrong answer: Synthroid only.
c. If I don't feel well when my labs are within the normal ranges, what do you do?
Desired answers: the normal ranges are just guidance, and there is often lots of room to play within the normal ranges. If that doesn't work, we have to consider things in addition to the thyroid for contributing to symptoms.
Wrong answer: If normal ranges don't make you feel well, it is all in your head.
d. What is your response to me asking about different approaches that I've read about on the internet or in books?
Desired answer: There is a lot of great info on the internet and books and some lousy info so one has to be selective. Don't hesitate to share the things you've learned about and we can discuss them in context to your treatment. I always enjoy getting new articles from professional publications about evolving methods.
Wrong answer: stay away from the internet, there is only rubbish out there.
e. How long does it take for me to get well, or at least see some improvement?
Desired answer: It is a slow process because your body has a lot of healing to do plus it takes a well to optimize your meds for your body. However, you should have made a lot of improvement in four to six months.
Wrong answer: 2 weeks or "never".
f. How often to you do tests and see me while we are in the optimization process? (Right answer is about every six weeks to 2 months).
Wrong answer: once a year.
g. Once I'm stable, how often do you monitor.
Good answer: every 4 to six months for a couple of years. If you are absolutely stable then once a year should be enough unless you are starting to show symptoms again, then you should call me.
Wrong answer: once a year no matter what.
I am not a doctor, nor have I ever played one on TV...
Come back and read this again, when you're 60 like me, after 30 years of having done it "au natural", having gone to doctors who disregarded the evil TSH, when you have osteoporosis because of having taken too much thyroid hormone, and your teeth are loose because the osteoporosis is so bad you've lost bone in your jaw.
Believe me, you'll wish you'd done it differently. You'll wish somebody had paid attention to the "evil TSH" test results.
I am sorry to hear of your osteoporosis. It is hard for me to fathom what you are going through with that, not having been there. However, I must disagree with you on TSH being the source of your problem.
TSH in and of itself, serves one purpose: it signals the thyroid gland to get to work and produce thyroid hormones. Low TSH means your thyroid gland is told to produce little or no thyroid hormones. That is all.
Low TSH does not cause osteoporosis or any other symptoms, for that matter. Period. Extremely high thyroid hormone levels (T3 and T4) are known to cause osteoporosis if left untreated for a long period of time, and should be the hormones that are monitored. USUALLY, but not always, high thyroid hormones will cause a low TSH, thus the very indirect correlation that doctors make between osteoporosis and TSH.
Here's an excerpt from a well-written paper that Dr. John Vlok Dommisse, MD wrote:
Some Modern Conventional Myths about Diagnosis and Treatment
In the author's opinion the current conventional approach is due to the following errors of thought: The first four concerns are widely-held myths that persist in the conventional medical community regarding the TSH and its role in the diagnosis and treatment of hypothyroidism:
(1) The first is that an elevated ultrasensitive_TSH level is almost-always required before a diagnosis of hypothyroidism can be made; and (2) that TSH's 'over-suppression' almost-always means that excessive treatment is in place. Normally, the anterior pituitary will secrete enough TSH to maintain adequate thyroid hormone levels. When this fails to occur, either grade-1-primary or secondary hypothyroidism is considered to be present. There seem to be subtle, conventionally called 'subclinical', failures of the anterior pituitary to produce sufficient TSH in response to low thyroid hormone levels that cannot be explained solely by the traditional form of secondary hypothyroidism (secondary to a pituitary tumor or outright pituitary failure, as in Sheehan's Syndrome: postpartum hemorrhage or infarction of the pituitary gland). This could also be due to a tertiary hypothyroidism (where the thyrotropin-releasing hormone ~ TRH ~ from the hypothalamus fails, for poorly-understood reasons, to stimulate the anterior pituitary to secrete adequate amounts of TSH), or to a TSH_specific hidden hypopituitarism.
(3) The third TSH-myth is that, just because the new ultrasenstive TSH test is a very sensitive and accurate test for measuring the TSH level, this suggests to imply that TSH is always or usually the correct yardstick by which to measure the function of the thyroid hormones, T4 and T3. There is an unconscious, unintentional 'sleight of hand' occurring here. The assumption is that, if TSH is low-normal, adequate amounts of T4 are being converted to T3 in the pituitary receptors; and that, if TSH is below normal, excessive amounts of T3 are being formed from T4 in those receptor cells. There does not appear to be any evidence that the pituitary gland ~ or any organ or tissue, for that matter ~ can convert T4 to T3 at any greater rate than that which is reflected in the serum FT3 level. Anyone who routinely measures the serum FT3 level will observe that the serum FT3 level is often low, even when the TSH level is low-normal or below normal ~ even in the absence of identifiable pituitary or hypothalamic disease. Some of these cases are so-called 'euthyroid sick'/ non-thyroidal illness syndrome cases, some are subtle secondary or tertiary hypothyroid cases without known disease involvement of either the pituitary or the hypothalamus. And some are any combination of these two forms of hypothyroidism, or of non-thyroidal-illness hypothyroidism, or of grade-3 primary hypothyroidism.
The TSH is an indirect gauge of T4 and T3 activity and depends on its own integrity-of-function and not only on the relative heights of the two thyroid hormones. Most realize this truth when there is known hypopituitarism or hypothalamic malfunction, but we don't recognize it is also true in subtle/ occult pituitary and hypothalamic failure, and in the hypothyroidism that is now increasingly recognized as a frequent accompaniment of non-thyroidal illness or the 'euthyroid sick' syndrome (Palazzo & Suter, 1990; Chopra, 1997; DeGroot, 1999). It is incorrect to state that the FT4 and FT3 levels are inconsequential: High or high_normal levels would indicate that the high or high-normal TSH is not even due to hypothyroidism but is due to lab error, stress, or a spurious high TSH, or some other condition. This is another example of why it is always necessary to measure FT4 and FT3. A TSH level can be dispensed with in a patient who over_suppresses the TSH even when FT4 and FT3 are not elevated, but, in our opinion, FT4 and FT3 can never be dispensed with.
(9) "Keeping both the FT4 and FT3 levels at the high ends of their normal ranges will cause osteoporosis": This concern was merited 30-50 years ago, when much-higher doses of thyroid hormone were used in the treatment of most cases of hypothyroidism. One of us (JVD) has not observed this complication in over eleven years of this more-aggressive treatment (unpublished data). In fact, his treatment_optimized hypothyroid osteoporotic patients' bone density scans not only don't deteriorate from one year to the next but almost-invariably improve, without the use of elindronate, calcitonin or any other drugs. This means that, for there to be 'overtreatment' of hypothyroidism, it has to be more substantial than is currently thought. Concurrent correction of other factors, such as deficiencies of vitamins, minerals, other hormones, and amino-acids, seems to maintain and extend bone density, even in the presence of optimal or 'aggressive' treatment of hypothyroidism.
Again, I am sorry that you are suffering, but I want the record to set straight that TSH is NOT an accurate measure of thyroid function. My TSH, for example has to be completely suppressed (less than .01) for my T3 and T4 to be high enough for me to feel well. Even at .01, my T3 and T4 measure low.
In the Information Archive thread on page 3 (http://www.healthboards.com/ubb/Forum118/HTML/000005-3.html) you find this well-written piece:
History Once upon a time, in the middle of the 20th century, doctors diagnosed thyroid disease by the symptoms of the patient. For hypo-thyroidism, treatment typically involved supplementation of thyroid hormone(s) from either animal sources or synthesized hormones. Hormone supplementation was provided to levels at which relief of symptoms was apparent, while avoiding the appearance of symtoms of hyper-thyroidism. Tests for TSH were known, but were not sensitive enough to adequately measure levels as needed for diagnosis and treatment monitoring. Then the “ultra-sensitive” TSH test was developed. And its use became widespread, on assumptions that TSH testing was meaningful. But the assumptions needed for TSH testing to be meaningful are many and questionable.
Assumptions about TSH testing In applying the results of the TSH test to diagnosis and monitoring of treatment there are several assumptions that have been made. (1) First, for diagnosis it is assumed that when TSH is outside the normal range that there is a problem with the thyroid system. (2) Next, the converse is also assumed, that if TSH is within the normal range that there is no problem with the thyroid system. (3) Once treatment has been started, it is assumed that if TSH is outside the normal range, adjustment of the treatment regime or additional treatment is needed. (4) But if TSH is in normal range, many doctors assume treatment is adequate and does not need further adjustment. (5) There is the assumption that the techniques used by diagnostic laboratories to calibrate their lab’s normal range are valid, adequate and result in properly calibrated normal ranges. (6) There is the assumption that the normal range for TSH of people without thyroid disease is the normal range for TSH in people with thyroid disease when treatment is adequate. (7) And although it is well known in medical research that in normal people TSH varies by at least 2 to 1 over the course of a 24 hour day, most doctors assume that they can measure TSH at one randomly chosen time and meaningfully interpret that even unto the decimal level, e.g., 5.6 is abnormal but 5.4 is normal. (8) Finally, in using TSH to manage dose levels for thyroid disease, it is assumed that the part of the thyroid system that sets TSH is acting normally and correctly, even though other parts of the thyroid system are broken.
Let us examine the first two assumptions. For diagnosis, TSH out of range means there is thyroid disease, TSH in range means no thryoid disease. The first assumption is generally valid, if the TSH is outside the actual normal range, the thryoid system is not acting normally. However, there are other things that can result in temporary changes in the TSH which do not mean that a permanent thyroid disorder is present. The converse is not valid. It is known, for example, that in central hypothyroidism, the TSH levels can be within normal range, even though the person is hypo-. Most doctors assume that central hypothyroidism is rare. Since it is
presumed rare, the doctors rarely test for it. I must ask, is the
rarity of this a result of it actually being rare or an artifact of
rarely looking for it. For you will not find something that you are
not looking for.
Assumption three is that once treatment has been started, it is assumed that if TSH is outside the normal range, adjustment of the treatment regime or additional treatment is needed. This is almost certainly a trivial truth. However, its converse, “if TSH is in normal range with treatment, then treatment is adequate and does not need further adjustment” is clearly false. Even the dosing directions for at least some kinds of thyoid supplement clearly state that dose levels can be increased even if TSH is in range already, so long as symptoms remain and TSH levels do not go out of range.
But there is a further problem with assumption four. It is dependent upon the further assumption (number 6) that TSH ranges in healthy people are the ranges for people with thyroid disease indicating correct management of the disorder and relief of symptoms. This assumption has never been proven, and there is considerable evidence to show it is utterly false. The normal ranges for TSH in people with thyroid disease being properly treated have never been researched. The medical community has no idea what TSH ranges should be for people with properly managed thyroid diseases. They don’t even know if the TSH ranges for people with hypo- that is being properly treated and the range for those with hyper- which is being properly treated are the same or different.
Further, many biological systems are as or more sensitive to peak levels than average levels, so if the glands involved in the TRH/TSH setting act that way, we can be certain that TSH levels in normal people have NO relation to TSH levels in people with properly managed thyroid disease. The thyroid gland itself is known to have such a peak sensitivity, it resonds to the the nighttime surge of TSH, which is often absent in central hypothyroidism. So to assume there is no such peak sensitivity elsewhere in the thryoid system seems to me to be the height of folly. But that is a necessary assumption underlying assumption number six.
Assumption five, that labs’ TSH normal ranges are properly set, has come under fire. There are good reasons to believe that the method used to set TSH normal range includes results from many people with thyroid disease in the input data used by the statistical process for setting “normal” ranges. How can the result be a true measure of the normal range, if significant numbers of input data are from thyroidally abnormal people? They can’t.
Assumption seven, that the TSH can be measured at one randomly selected time during the day, and still be interpreted to the limit of significance in the reported numbers, is prima facia false. That is like saying I can measure the outdoor temperature at randomly different times of day and compare the figures to fractional degrees
to a standard range. So if the doctor measured at one time of day
you are normal, but if he measured at another you are not. Really?
Assumption eight, that even though it is known that part of the thryoid system is broken in thyroid disease, it can be assumed that the part that sets TSH is still correct – this really bothers me. As an engineer, if I know that some system is broken, I do not trust any part of it.
Summary TSH as a diagnostic is limited to showing the existence of disease. If TSH is outside normal range, then the thyroid system is out of kilter. But TSH is not useful as a means of monitoring wellness. TSH in range proves NOTHING. It does not prove that someone not under treatment is free of thryoid disease. And it certainly does not prove adequacy of treatment in general for thyroid disease, and it may not prove adequacy of treatment for any specific case of thyroid disease. TSH is sort of useful as a quick screen, but nothing more. If doctors wish to use TSH for other purposes beyond a quick screening, then they need to prove by double-blind testing what is provable from the eight assumptions listed above. And some can be clearly proven false, based on the limited information known to us now.
[This message has been edited by Meep (edited 08-12-2003).]
I am not a doctor, nor have I ever played one on TV...
I have a friend that all the docs paid attention to was her "evil TSH" and she got very very ill. For 15 years they checked the TSH and went by that, told her she was depressed and had anxiety, had pancreatitis and on and on, well she ended up with serious diabetes she couldn't control, we are talking numbers in the 400's and 500's and no meds would help it and she ended up with heart problems to boot, WHY??? because her FT4 and FT3 were not looked at and severely out of range.
Today, luckily she has found a doctor that doesn't go only by the TSH, she looks at the whole picture and my friend is doing much better, her blood sugar is staying much lower and she is feeling much better because her thyroid is more under control.
Sorry you are having problems, but I agree with MEEP, its not because the docs didn't look at your TSH.
My TSH can be perfectly normal but if my FT4 or FT3 are just a bit off, I feel like crap, so if my doc looked only at the "evil TSH" then I would be going through life feeling like crap all the time and barely being able to get up or do anything because it affects me that bad, sorry but I refuse to do that.
[This message has been edited by dea4 (edited 08-12-2003).]
Mollymalone, TSH is kind of like your check engine light in your car. It means something is wrong, but that is really the end of it's diagnostic usefulness. People with no thyroid problems get osteoporosis too. Even people with wonderful diets do. An estimated 55% of Americans have either osteo or low bone mass and 85% of those people are women. There is such a variance with each persons TSH that there are only average ranges and everyone is so different. If your doctors had you on too high of meds, there is some evidence that this can contribute to the osteo, but has to be pretty high doses. Anyway, the point is that TSH is not a diagnosis, only an indicator for further tests. My mom has osteo and she has been undertreated for thyroid for years. Her TSH has always been too high, not too low. She has always taken calcium, has no family history and has always eaten very healthy, so who knows. I do wish you the best. IWL
I am a prime candidate for osteoporosis! I am 5 ft 1 inches, 110-115 lbs. I make sure I take calcium, in the pm and eat plenty of calcium rich foods to try and offset my chances. I have to take thyroid medicine and therefore accept it. I am just starting to feel better on the thyrolar and synthyroid that I take. I am thankful for my doctor looking at the whole picture and not just the TSH! My leg aches are completely gone and my feet do not hurt any longer. I notice that my hair doesn't fall out anymore when I shower, which used to come out in clumps. My skin on my hands now don't look as dry and aged. My only problems I still have is tiredness and low libido. I am happy though that I feel as I do because if has made such a difference in my life!
Originally posted by Mollymalone:
I'm sorry, but you're wrong. I've been on thyroid hormone for 30 years and have been tested regularly, once a year. The doctors have done all the correct tests but have ignored my low TSH because I always "felt good". They didn't want to mess with it and cause me to not feel good. It's as simple as that. The doctors I've had are wonderful, caring physicians, and they listened to me about how I felt. Unfortunately, they were wrong in doing that.
I am sorry to call you on this again, but blatantly saying that someone is wrong could be taken as inflammatory by some. I know you have strong reason to believe that your osteoporosis was caused by the doctor ignorning the TSH test, but I am not sure I can agree with you on that, since you don't provide all the facts to prove your point.
You say "The doctors have done all the correct tests..." yet dont' tell us what the tests were or the results. Not to mention that 30 years ago, the tests that tell us the most today wre not reliable due to technological limitations.
Lack of TSH has NO bearing whatsoever on bone mineral density.
What I'm seeing here on the boards is a lot of people saying that the TSH test is not to be relied upon, and I see people writing sarcastic comments about the "myth" that too much thyroid hormone can cause osteoporosis. You'd better listen to that one, because it's true. There is no osteoporosis in my family of 5 sisters and 13 aunts. I'm the only one who has it, and I'm the only one who has a thyroid problem and who has been on thyroid hormone, and the osteoporosis can't be blamed on bad lifestyle. If my wonderful, caring physicians had been more careful about the TSH readings, I wouldn't be in the trouble I'm in today.
No one said it is a myth that too much thyroid hormones can cause osteoporosis. It has been "proven" in clinical trials. In the clinical trials, however, they used post-menopausal women who were already at risk for osteoporosis and used very high doses of synthetic thyroid hormone. In other studies bone mineral density actually INCREASED on thyroid meds, so the so-called "proof" is inconclusive.
Bad lifestyle isn't the only risk factor for osteoporosis, either... Yes, there are some lifestyle choices that can aggravate the problem, but it isn't all about lifestyle, either.
Osteoporosis has many causes, including Genetics/family history; Lack of weight-bearing exercises; Smoking; Inadequate calcium intake throughout life, EXCESSIVE Calcium intake; Hypoparathyroidism (which often accompanies hypothyroidism), and excess alcohol consumption to name a few. DO you have any of these common risk factors or have you overlooked something? If so, lets shift the blame to the more likely culprit.
How many hundreds of hours have you spent doing research on this? If you have spent the many hundreds of hours on this that I have, then lets debate. Otherwise,lets agree to disagree and drop this subject.
I am not a doctor, nor have I ever played one on TV...