TSH means very little when taking thyroid meds. Many doctors don't understand that TSH is frequently suppressed when taking thyroid meds. That does not automatically mean that you have become hyperthyroid. You are hyper only if having hyper symptoms, due to excessive levels of the biologically active thyroid hormones, Free T3 and Free T4.
For example, my TSH has been about .05 for well over 25 years, without ever having hyper symptoms. In fact I had lingering hypo symptoms all that time. After finding out the importance of Free T3 and confirming mine as low in the range, I got my meds changed to include T3 and after some tweaking, my Free T3 is now 3.9 (range of 2.3 - 4.2 ), and my Free T4 is .84 (range of .60 - 1.50), and I feel best ever.
A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results. If you want to know more about clinical treatment this is a good link.
When your husband does go in for blood work, he should request testing for the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and Total T4), along with the TSH they always test for. If the doctor resists, then insist on it and don't take no for an answer. Free T3 is the most important thyroid hormone test because FT3 largely regulates metabolism and many other body functions. Scientific studies have also shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate.
Since hypo patients frequently have deficiencies in other areas, I would suggest additional testing for Vitamin A, D, B12, zinc, selenium, and RBC magnesium.
With Hashi's there seems to be two approaches used by doctors. One is to start medication fairly early, to prevent the worst of hypo symptoms. Others like to wait until hypo symptoms become overt. You can read about the preventive approach at this link.
Regardless of the treatment approach, Hashi's does not go away, but the resultant symptoms can be minimized by taking adequate doses of the proper medication. It will become very important to him to find a good thyroid doctor that will treat him clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results. This is a link to a letter written by a good thyroid doctor. Note the clinical approach to treatment.
This means your pituitary gland, which is like the thermostat for the thyroid, is not have to try to turn up the action your thyroid is doing (unless there is an abnormal adenoma or growth on the pituitary causing a depression of the number). Normally, if you were not on thyroid medication, one would suspect hyperthyroidism with those TSH numbers, because the pituitary is not stimulating the thyroid as much as normal. Thyroid function testing (like free T3 and free T4 levels) would be in order (as well as assessing symptoms) to see if you had this hyper-functioning of your thyroid hormones.
As it is, it sounds like you need to get with your doctor, have your actual thryoid hormones tested, not just the TSH (a hormone of the pituitary) and adjust your thyroid medication as needed, because your TSH number ought to be higher than that. According to the national institute of healths' website, someone being treated for a thyroid condition should have their TSH between 0.5-3.0 mIU/L.
As gimel noted, there are instances in which TSH becomes totally irrelevant; however, the actual range established by AACE more than 8 yrs ago, is 0.3-3.0.
There are some of us whose TSH stays low because of being on T3 treatment. Like gimel, mine stays lower than low, at < 0.01 all the time and I have no hyper symptoms. My FT3 and FT4 are about where I need them to be.
Have to disagree with your last paragraph. If thyroid hormone levels (Free T3 and Free T4 ) are adjusted adequately to relieve symptoms, that will automatically result in a TSH level for that person. Sometimes it will be suppressed below the range, but that should not be a concern. You cannot adjust TSH independently of Free T3 and Free T4..
In addition, there is nothing I have been able to find that suggests that suppressed TSH levels are a problem, unless it actually reflects having hyper symptoms due to excessive levels of Free T3 and Free T4. I can provide lots of references to studies that confirm this. Here is just one of them.
3. Hypothyroid patients whose thyroid hormone
replacement dose is being regulated against the
TSH reading alone are being maintained in an
under-treated state and are correct to assert
that they feel better on a higher dose.
Therefore, hypothyroid patients should not have
their thyroid hormone dosages set by reference
to their TSH readings.
I don't know you intended this, but I get a sense my input is very unwelcome on this forum. I'm sorry- I intend to try to stop posting on it to avoid this in future. I confess I am not a thyroid patient, though I have a background of completing vocational nurse's training and have had interest in the thyroid, with my grandma having had her thyroid removed due to cancer and another family member who had an issue with their thyroid.
I was not intending to suggest a person can adjust their TSH independently of thyroid hormones. The pituitary, sometimes called the master gland, responds to the amount of thyroid hormones in the body with thyroid stimulating hormone either going up or going down in level- the pituitary responds as necessitated. My father got out from the library a very extensive book by an expert on the thyroid that explained this very well using the thermostat analogy. I guess I did not do as clear a job as was presented in the book.
Please note also that I mentioned assessing symptoms in my first paragraph. And in the second paragraph, I said adjusting medication as needed. Whether it's needed or not, of course, would be determined by the patient and their doctor.
Barb: I am aware there are TSH guidelines set forth by the American Association of Clinical Endocrinologists. But this time, I found and was siting a different source- an NIH page updated this month, 2011 (see private message for source).
My apologies. In no way was I trying to be argumentative or discourage you from participating on this Forum. After my saying that a good thyroid doctor should treat clinically by testing and adjusting Free T3 and Free T4, without paying any attention to resultant TSH, you then stated that the members TSH should be higher and that "someone being treated for a thyroid condition should have their TSH between 0.5-3.0 mIU/L".
I just wanted to make sure that anyone reading our posts would understand that even when a patient is not taking thyroid medication, TSH is nothing more than an indicator, to be considered along with more important indicators such as symptoms and the levels of Free T3 and Free T4. When medication is being taken the TSH becomes irrelevant.
Believe me you are not alone in misunderstanding that point. I think that all our doctors were taught the "Immaculate TSH Belief" during their sometimes brief training in Endocrinology during Med School. Fortunately, some of them later gain enough direct experience in their practice, or read enough dissenting scientific material, that they change their approach.
I have no idea how they try to justify TSH as the only test needed to diagnose and treat a thyroid patient. I have spent an incredible amount of time over the last 3 years plus, looking (unsuccessfully) for any scientific study data that shows that TSH correlates well with either Free T3, or Free T4, much less with symptoms.
I went to the section that said questions for you off my medhelp page. I did not know anyone had responded until after I posted my response.
Again, in my original post, I mentioned symptoms in my first paragraph and stated thyroid testing, including free T3 and free T4 would be in order.
You state your opinion when you say TSH becomes irrelevant when taking medication. I stated something taken from the national institutes of health, and was relying on the experts who did and reviewed the page.
I never stated TSH was the only test needed to diagnose and treat a thyroid patient (please take a look). However, it is an important test.
While I didn't write down the name of the author or the book, believe me, when my family member did extensive research after a thyroid issue was discovered, he tried to find the best source material he could on the thyroid & this book by an expert checked out from the public library was very thorough.
I'm sorry you got the impression that your input is unwelcome; I certainly didn't intend to give that and knowing gimel, I don't think he did either. This forum is for discussion of thyroid treatments; just because we may not agree with everything you say, doesn't mean you aren't welcome.
The problem with some of your statements like "The pituitary, sometimes called the master gland, responds to the amount of thyroid hormones in the body with thyroid stimulating hormone either going up or going down in level- the pituitary responds as necessitated." don't hold true with what we have found to be true in our personal lives and those of our members.
I'm a prime example: My TSH stays at < 0.01, but that does not correspond with my thyroid hormone levels, which are sometimes very low in the ranges, leaving me with multiple symptoms. My pituitary is not responding to my thyroid hormone levels and my pituitary has been tested and determined to be functioning properly. I've had doctors who kept me very ill, because they focused on the TSH levels and believed it should respond to thyroid hormone levels and when it didn't they took away the medication that was helping me get out of bed in the morning.
At the risk of sounding arrogant, or knowing it all (I certainly don't), I have to say that we see way too many patients being treated with similar beliefs as yours, relying on TSH to follow hormone levels, this often doesn't happen for those of us who on thyroid medication, particularly, those of us on T3 medication.
I'm not targeting you, because this is what is taught in the medical profession, but we see, here, from our own experience as well as other forum members that don't get well from the "standard" treatment. We see too many doctors talking about "treating symptoms", but when it comes down to it, they rely on TSH and when it's "in range", we should be good to go.......but all too often we aren't.
I commend you for completing your vocational nurse's training and for trying to trying to learn what you can regarding thyroid issues. I hope you will continue to try to learn.
No thyroid issue is a fun thing to live through and sometimes those who haven't lived through it, often don't understand what we go through and how we struggle to get the proper treatment.
Thank you for your thoughtful response. What kind of pituitary testing did you have? Did it include a dynamic pituitary MRI, with and without contrast?
There may be much to learn by the professionals, as evidenced by ever changing news stories about how they change their minds on things. But one of the reasons for a non-functional hormone in the pituitary can be a growth on the pituitary, which at times can be missed by radiologists (just ask Rumpled, moderator on the brain tumor/pituitary tumor forum).
I tell you, after my hysterectomy, my FSH (another pituitary hormone), trying to stimulate my no longer present ovaries, very definitely tried to its job. It went up and up, sky-rocketing far past normal levels. However, this is of no concern to the endocrinologists, because we know the cause- the ovaries are gone.
I too, if I were a doctor, would be concerned about non-existent TSH. I'm glad though, that you have found a medical team that treats you as a person they care about when it comes to medicating rather than sticking to what is currently accepted at large in the medical realm when it comes to the pituitary and the thyroid. My own doctor, when he tests my thyroid function orders TSH and free T4. That is better than some doctors, I believe (and my thyroid function is normal).
Just curious. If you were a doctor why would you be concerned about suppressed TSH? Why be concerned about one thyroid test being out of its range, when the actual, biologically active thyroid hormones are well within their ranges, and there are no hyper symptoms evident?
Yes, TSH can be a useful indicator for initial diagnosis. But after taking medication, I can provide you multiple references to scientific studies that say that it will frequently be suppressed, without attendant hyper symptoms, and with Free T3 and Free T4 within range. I have yet to see any scientific evidence to the contrary, only dogma reiterating TSH as the definitive test.
Many hypo patients continue to be under-medicated because of the "Immaculate TSH Belief", and lack of acceptance that a suppressed TSH for a patient taking thyroid meds does not automatically mean that patient is hyper. On the list of reasons why we have so many members here on the Forum, that is probably no. one. No. two would be the lack of recognition that a patient doesn't always convert T4 to T3 adequately, so Free T3 levels are not tested, and low levels of Free T3 are thus not identified. No. 3 would be the widespread use of "Reference Range Endocrinology", by which doctors will tell a patient that a thyroid test that falls anywhere within the reference range is adequate. They say this obviously without any understanding of how the reference ranges were originally established and therefore how wrong the ranges are.
If what I said about TSH were only my opinion, I would have stated it that way to make clear to members that it was only an opinion. Anything I state on this Forum is based on personal experience of myself and other members, supported by extensive searching of scientific data on the net. I am always happy to supply links to such data, upon request. I am also happy to discuss different points of view. I think it is always good to examine your beliefs and what you say on the Forum. I have no problem with that at all. But when statements are totally different from one post to another, it can be very confusing to those who read the Forum. I have always thought it was best to bring out differences in positions, and examine the basis for them, so they can be resolved.
If you want to reassess your current belief in the efficacy of TSH testing, just let me know and I will provide a long list of reading material will cause you to never again have any confidence in TSH testing. LOL
I've had the usual hormone tests to check for pituitary function, and with everything normal (except TSH), plus lack of symptoms pointing to pituitary tumor, there's no reason to believe I have a pituitary issue.
I would also like to mention that while gimel and I both have suppressed TSH, we have another member on the forum who lives very comfortably with a TSH of around 20. Being on the opposite end of the scale, this person has also been "mistreated", because doctors insist on increasing medication to reduce the TSH, even though FT3 and FT4 are both at comfortable levels. Again, TSH is not adequate for treating thyroid issues.
Adding the FT4 test to the TSH, is better than nothing, but even at that, without the FT3 test, treatment is often inadequate, because too many of us don't convert the FT4 to FT3, so the hormones can't actually be used, since FT3 is the hormone used directly by the cells. Again, I use my own example, because I had a doctor who refused to test FT3, so while my TSH was in the basement and my FT4 was near mid range, I was still very ill. I took it upon myself to get an FT3 test and learned that it was actually very low, because I wasn't converting properly. I'd like to point out, that doctor got fired. I now have an endo who tests both FT3 and FT4 and is willing to prescribe T3 medication.
We learn daily from the professionals, by doing all the research we can; it would be nice if the professionals would admit that they could also learn a few things from the patients who have to live through this he!!
What we see here on the forum is a real life tragedy of people getting inadequate treatment because of the belief that TSH is the gold standard for treating thyroid issues.
It sounds like the book you got from the library is quite "thorough"; however, it also sounds like it might be somewhat obsolete; and please keep in mind that the world is full of so-called "experts" who don't necessarily know what they are talking about, or who refuse to change their thought process even when presented with scientific evidence that's contrary to their belief.
It seems that we sort of hijacked this thread from the original poster. Stacey0123, if you are still here, please provide the latest results of your thyroid tests, along with reference ranges, which vary from lab to lab, so must come from your own report.
It would also be helpful if you could tell us what med you are on, whether or not you've been tested for thyroid antibodies and whether or not you have nodules on your thyroid.
I would be concerned about TSH being as low as Barb's not because of her thyroid function being fine with medication, but my concern would be with her pituitary, if there was a tumor or some other growth causing it to emit absolutely no TSH at all. Perhaps there is another reason, such as that particular pituitary hormone emitter has become non-functional because the medications have taken over, causing it to cease emitting. I'm not a doctor, however.
I find the term "immaculate TSH belief" offensive, not because you are angry with doctors out there who rely heavily on TSH, but if you are comparing it facetiously to Christ's conception, gimel by using the word "immaculate".
I have not touted TSH as the only thing to look at when a doctor tries to treat a thyroid patient. I responded to a question about TSH levels and stated medicine should be adjusted as needed. The doctor and the patient need to decide if it is needed.
Barb- I do not believe the book was old. I am not a thyroid patient and believe if someons is having many symptoms consistent with a thyroid problem, they should be referred to an endocrinologist for thorough testing, not just what my internist orders.
For the person with a TSH around 20 while thyroid hormones are fine, I hope they have had a TSH emitting adenoma definitively ruled out by way of dynamically done pituitary MRI with and without contrast. These hormone emitting pituitary tumors can be as small as 1 mm, which can be hard to spot.
I'm sorry you guys have had such a rough time of it, but do not want to deal with the stress of what I sense as anger and animosity (whether felt towards me directly or not) and still intend to avoid this forum in future.
It's not uncommon for people on thyroid medication to have suppressed TSH, particularly, those of us on T3 medication. I have no symptoms of a pituitary tumor and 3 doctors have agreed that additional pituitary testing is not needed. You said if "that particular pituitary hormone emitter has become non-functional because the medications have taken over, causing it to cease emitting." - what would have me do, stop taking the medication, and go back to being hypo again? That's what my doctor did and kept me very ill for over a year......that's why he got fired.
Regarding the person with the TSH of 20 - some of us just don't fit the "mold" that medical personnel want to put us in. A person is only hyper or hypo if symptoms and FT3/FT4 indicate.
No, you did not tout TSH as being the "only" thing to look at, but you put a lot more importance on it than it really deserves; we rarely consider it as more than an "indicator" for diagnostics, simply because of our experience dealing with people here on the forum, who have so much trouble with doctors who won't listen. We have patients, regularly, coming here in tears, because the doctor said there was nothing wrong because they have a normal TSH, when, clearly, there is something wrong..check out the following thread; the poster's comments from today are a classic example, with one more patient leaving a doctor's office with nothing but the offer of antidepressants.
I have absolutely no problem of any kind with your participation on the Forum. I have used the description "Immaculate TSH Belief" because I ran across it somewhere and thought that it well described the approach of many doctors in unsuccessfully diagnosing and treating hypo patients. Nothing more than that.
The only reason I even responded at all to your first post here was that I stated, "TSH means very little when taking thyroid meds. Many doctors don't understand that TSH is frequently suppressed when taking thyroid meds. That does not automatically mean that you have become hyperthyroid. You are hyper only if having hyper symptoms, due to excessive levels of the biologically active thyroid hormones, Free T3 and Free T4."
Your immediate response gave the following conflicting recommendation, ".......... adjust your thyroid medication as needed, because your TSH number ought to be higher than that. According to the national institute of healths' website, someone being treated for a thyroid condition should have their TSH between 0.5-3.0 mIU/L."
This recommendation directly conflicts with what I suggested, and conflicts with many scientific studies that I told you I could provide as support to what I said. There was nothing personal intended. I responded because it is not a good idea to provide such diverse recommendations/info to members who are searching for answers. I am sorry that you got offended and became defensive. Why not just step back and evaluate whether there really is scientific data supporting your recommendation, or was it was just a reiteration of the usual TSH dogma that we see and hear about daily from our members. If there is scientific study data that supposedly supports the primacy of TSH, , then bring it up and let us all analyze it.
I hope you don't choose to avoid us in the future. I'm sure you know from all your experience on Forums, that members need all the combined help we can provide.
Answer to your first question no. I feel under attack with the question also. I would have, like whoever did, wanted to check out your pituitary function in other areas if I were a doctor- it's great the other areas came back fine and hope they included a pituitary dynamic MRI in their checking. I would feel the doctor would have been remiss to not be concerned about your pituitary and check it out.
Second paragraph- I was not speaking to thyroid balance, except I was wondering about a TSH producing adenoma on the pituitary with a number of 20 with normal thyroid hormone levels.
Third paragraph- feel like this is another attack on me. I was trying to help someone with a question specifically about TSH levels.
As I explained to you, I had not seen your response. I was responding to the initial post through the questions for you section on my own medhelp.
I was not arguing with you with my initial post.
I went to a source about TSH that I think would be respected by medical professionals responding to Stacey's question, not having seen your response as I was responding. I said as needed, because any adjustment to medication should be determined by the doctor and the patient. If it were determined by Stacey and her doctor adjustment to medication is not needed when looking at Stacey's whole picture, it should not happen. This is why I was careful to say as needed.
As a non-thyroid patient with limited knowledge, but a desire to help people, who has felt ganged up on here, judged through the prism of misunderstanding and experiences you folks have had, and as someone who feels very stressed by this exchange, I have no desire to come back to this forum. I intend to avoid it and try to help people, God willing, on other forums.
I want to Thank You very much for your informative comments on your TSH
levels not being as instrumental as your Free T3 is. You gave me a lot of
great information and made me feel so much better about my levels. My Dr. was not going from my TSH level to adjust my medication, I was just concerned myself when I saw my lab work and it noted "Low" for my TSH level. It just scared me. Thank You again for all of your medial knowledge on TSH levels and Thank You for the heads up on also checking my Vitamin A, D, B12, Selenium, Zinc and Magnesium levels as many of these were adjusted as well. You helped me!!
I am having a horrible time. I fought for 7 years to get cytomel and I finally feel normal, now my doc wants me off because tsh levels. Here are my levels:
free t3 3.2
thyroxine, free .84
My body temperature is 97.4. My resting heart rate is 58 and when I was being examine was 80. My blood pressure is 110/72. I have no signs of being hyper, feel great but cannot find a doctor to get over the tsh levels. I was thinking of going off my meds for a week and going to a new doc to get my bloodwork so I can continue getting my scripts. Before the meds I spent 7 years in hell, freezing, obese, starving myself, no energy, pain everywhere, I cannot do that again. I have to find a way to keep my life line.
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