This topic is a testy one. Here are six questions with my thoughts about TSH. Let’s examine TSH – experiences, thoughts, beliefs, and biases. Please feel free to add your own input in the comments section!
What is your brief overview of TSH?
TSH stands for thyroid stimulating hormone. It is a hormone produced by the pituitary gland and in simple terms, it “tells” the thyroid gland to produce two hormones called T4 and T3 in specific quantities. Those thyroid hormones circulate in the body and attach to our cells where they are used by the body for all of the bodily functions. There is no part of the body doesn’t need these vital hormones in the right quantity.
In a healthy body, when the levels of those two hormones get below a certain point the pituitary sends TSH hormone to the thyroid gland to stimulate it to release T4 and T3. The TSH rises when it’s stimulating – think of it as “talking” to the thyroid to get it to work. Like a friendly conversation between old friends, the TSH talks and the thyroid listens, and it releases more thyroid hormone into the circulation; mostly T4. When there’s the right amount (and it’s different for everyone), the pituitary receives the message and lowers the TSH. And the whole process is repeated in a circadium rhythm.
When the thyroid gland begins to fail due to thyroid diseases, or is surgically removed, or has been killed with radioactive iodine in the treatment of Graves disease, the conversation between the pituitary and the thyroid become more heated and the pituitary starts “yelling” at the thyroid gland to release it’s life giving hormones. TSH rises higher the greater the inability of the thyroid gland to produce thyroid hormone. In other words, the worse the function of your thyroid gland, the higher your TSH will be. There are exceptions to this rule, of course, in the case of pituitary disease. Sometimes it’s the pituitary that’s not working properly, and that needs to be ruled out in cases that don’t fit the norm.
If your thyroid gland is failing, is missing, or has been killed, you will be prescribed some form of thyroid replacement hormone. Most physicians will monitor the level of your TSH to determine the appropriateness of your treatment. The idea is that when your thyroid medication sufficiently lowers your TSH to the level of the normal, healthy population that you are “euthyroid” and should not be experiencing any thyroid related symptoms.
How do you feel about TSH? Do you have an emotional response?
I do, I do, I do have an emotional response! I’m afraid of it. Damn scared of it, actually. At the power it has in the hands of a doctor who is unaware of some of the most basic principles that at the very least a thyroid patient should be treated until their TSH is between .5 and 1.5 and that they should have a preference within that range. I ran into a doctor at the emergency department a couple of years ago (when I arrived by ambulance because my heart was very unhappy with my T4 reduction) wonder why I was worried about a TSH of 5 since it was in the normal range; despite the fact that my opening conversation with her was to tell her I had no thyroid function. TSH rising higher in a normal person means more thyroid hormone, whereas in someone without a thyroid, it means falling thyroid hormones within the body, as the thyroid has no ability to send out hormone in response. The pituitary can “yell” all it wants – no amount of rising and yelling will inspire a broken gland to send out hormones.
In my final days on T4 only therapy (Synthroid), when it was failing me, I was unable to function until my TSH lowered to .11. At .11 I was able to feel human again after a long time of being a complete wreck. My doctor told me he couldn’t leave my TSH there and he lowered my dose. I begged him not to but my dose was lowered. My TSH rose to .98 and he was very happy with that. I remember the moment, actually. I wanted to die. I wanted to give up, I was so sick of being exhausted and broken. My doctor wasn’t trying to be mean – he’s been a supportive influence for almost 35 years, but there were guidelines to follow, and he believed he was doing the right thing. More current research shows that some patients on T4 only must raise their FT4 level up high enough that it suppresses TSH, in order to get the FT3 hormone high enough. Current therapy options for combinations of T4 and T3 medication can change this outcome and provide the necessary T3 without the need to increase the T4 so high.
How has TSH played a role in your treatment?
In the first few years on T4 only, I was monitored only using TSH. I never knew what my free hormones were. My TSH was maintained at about 2, which is higher than the current recommendations of .5 – 1.5 for thyroid patients. When I look back on those years, I definitely believe I may have done better with a ‘tightening down’ of my TSH by raising my dose a little. I had residual symptoms that may have resolved, or been better resolved, with a little more thyroid hormone, but who knows? I did okay in those years, and while treatment wasn’t perfect, I lived fairly normally.
Once I was on combination treatment (75mcg T4 and 25mcg T3), my TSH was monitored right after my dose. Oh boy, can I tell you that’s definitely NOT the way to monitor combination therapy, nor is an appropriate way to adjust the dose when on combo. The TSH will lower significantly in response to a dose of T3 since it’s the more biologically active hormone. A dose of 25mcg is sufficient to suppress TSH for many hours and measuring TSH right after the dose doesn’t provide much information about whether the dose is correct.
My TSH was suppressed for many years – getting to less than .01 for most of it. I started testing first thing in the morning without medication and my TSH was still .01. I was overdosed. Significantly overdosed and it wasn’t just TSH that said so. I didn’t know any better and carried on with the dose. The endocrinologist was long gone from my treatment plan, and my family doctor continued to follow the plan. My family doctor has always been great at referring to a specialist when needed, and he did that. If he had tried to change it, I would have argued my way back into the dose anyway, because in my mind, it was either that, or the result of T4 only, which had failed me miserably, and that was another kind of nightmare.
Has your belief about TSH changed over the years?
I was a staunch anti-TSH’er for many years. I was firmly entrenched in my belief that it did not matter. I was also very overdosed on a dose of 75mcg of Synthroid and 25mcg of Cytomel. Now that’s a story of a dose gone wrong, but I’m going to save that thought for another time.
My more recent research has made me considerate of TSH. Now don’t get me wrong, I am not claiming to be a researcher, but for many years you could find me reading articles and sourcing out the limited information that was available to me at the time. My research began in 2005 out of a need for an alternative to T4 medication only, which was failing me. I came across a doctor who was talking about T3. His name was Ridha Arem. I bought his first book and got a referral to an endocrinologist.
My belief about TSH is changing. This is with respect to my own treatment – I make no quantifiers for others, but yes, my belief has changed.
What role do you think TSH should play in treatment?
I think TSH is a part of the whole picture. I’ve spent a fair bit of time in the ‘alt med’ world, reading about thyroid hormones and TSH. Many people abandon the idea of TSH entirely, citing “TSH is a pituitary hormone, not a thyroid hormone, therefore it’s not relevant”. Wow. Let that sink in for a moment. Not at all relevant. I disagree wholeheartedly.
TSH is a part of the endocrine system. The definition of a system is: “a set of things working together as parts of a mechanism or an interconnecting network; a complex whole”. It’s purpose is to work with the thyroid gland in the healthy body to produce thyroid hormone, and to inspire the gland to stop or slow production in an exquisite, timely way when saturation has been reached. It becomes more challenging when one partner in the relationship can no longer pull their weight, as is the case with a failing, failed, or missing gland. Does TSH tell the whole picture of the function of the cells? Does having a normal TSH during thyroid disease mean that the treatment is successful? Unequivocally no. Hear me clearly – that’s a resounding no! But I think it’s reckless to decide it has no place in the evaluation of whether a thyroid dose is sufficient or not. There’s a big gap between “TSH is the only thing that needs to be measured”, and “TSH has no value in thyroid therapy”.
Does your doc/endo care about your TSH level?
That’s a big question. My family doctor is very TSH centric, however, since my treatment with combination therapy, he has let it be. I recently saw an endo who didn’t seem to mind when it was .13 but is happier with a bit more TSH. The other endo I saw within the past five years was very TSH motivated and wanted my TSH between .5 – 1.5, regardless of how I felt or what my free hormones were doing. There has to be something better than this approach.
I’ve seen naturopathic doctors who don’t care, but most conventional doctors do. I think using TSH as a part of the complete picture of labs, FT4, FT3 and TSH, and a thorough evaluation of symptoms is important. I believe TSH can point in the direction of a bit too much thyroid hormone or not enough, and it’s a valuable part of an assessment of how we’re doing with our medication dose.