Having struggled for many years with inadequate treatment for hashis on the NHS, I ended up seeing a private GP and swapping out my levo for erfa. I am got up to 2 grains of erfa and felt a lot better, but still with room for improvement. I am slightly anaemic, so it could be that that's taking the edge off. In no way do I feel over replaced. But my TSH is completely suppressed - the results say <0.01. My ft4 is 13.4 (range 12-22) and my ft3 is 5.8 (range 3.1-6.8) so neither of those are high. both my private GP and my NHS GP are concerned about my suppressed TSH. My private GP suggested swapping out some of the erfa for levo, to see if that has any effect on my TSH, but I've tried that several times now and within a few days of doing so, I always and up depressed, which has been one of my major ongoing hypoT symptoms.
Should I be concerned about my TSH? Any ideas on a way forward?
Many thanks
Susie
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Wooziesoozie
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My TSH has been suppressed since I started NDT, as it will be if you are on enough. I have never seen any evidence that supports low TSH is a risk factor for anything. High T3 may be, but as you say, your T3 is fine.
Unfortunately the medical profession still believes TSH tells you anything useful - I don't agree.
My doctors are on about heart attacks and osteoporosis. I'm more concerned about the latter to be honest as I'm already osteopenic.
Do you self medicate and keep an eye on your numbers yourself? I'm thinking that might be my only option. My problem is, my gastroenterologist does 6 monthly blood tests to keep an eye on my coeliac disease and related bloods, and one of the ones he always does is TSH. So I'm going to be forever getting lectures about the risks of suppressed TSH. This wouldn't bother me so much, except that I have 2 other autoimmune conditions that need to be managed by the NHS.
You might find this of interest from over twenty years ago in The Lancet. It does only talk about thyroxine (i.e. doesn't mention T3), but that's most likely because thyroxine has been dished out as the one size fits all treatment for so long now. Of course there may be other more recent research that either backs this up or makes it defunct
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Long-term thyroxine treatment and bone mineral density
Abstract
Studies of the effect of thyroxine replacement therapy on bone mineral density have given conflicting results; the reductions in bone mass reported by some have prompted recommendations that prescribed doses of thyroxine should be reduced. We have examined the effect of long-term thyroxine treatment in a large homogeneous group of patients; all had undergone thyroidectomy for differentiated thyroid cancer but had no history of other thyroid disorders.
The 49 patients were matched with controls for age, sex, menopausal status, body mass index, smoking history, and calcium intake score; in all subjects bone mineral density at several femoral and vertebral sites was measured by dual-energy X-ray absorptiometry. Despite long-term thyroxine therapy (mean duration 7·9 [range 1-19] years) at doses (mean 191 [SD 50] μg/day) that resulted in higher serum thyroxine and lower serum thyrotropin concentrations than in the controls, the patients showed no evidence of lower bone mineral density than the controls at any site. Nor was bone mineral density correlated with dose, duration of therapy, or cumulative intake, or with tests of thyroid function. There was a decrease in bone density with age in both groups.
We suggest that thyroxine alone does not have a significant effect on bone mineral density and hence on risk of osteoporotic fractures.
You do have the right to refuse to have your TSH tested. Technically consent is required for any testing, so you could withhold your consent if a TSH measurement is not necessary for the condition being investigated - which I don't think it is for coeliac.
I am still firmly convinced that they use those tactics to scare people & because they are taught that TSH tells them your actual hormone status - it doesn't.
Yes, my GP said my TSH shows that my brain is telling me that I'm taking too much thyroid hormone. I don't know what my ft3 and ft4 show in that case, given that they're both well within range and could even be said to be a little on the low side...
So...can I totally ignore my TSH, so long as my symptoms are ok and my ft3 and ft4 are in range?
Your TSH is not calling for any more hormone because you have enough, not because you have too much! It's a feedback loop, that's how it's supposed to work.
I feel best when my FT4 is 16-17 (mid range) & my FT3 is at least 6, so you could squeak it up a little if you feel your symptoms have not all gone.
I ignore my TSH, in my opinion it's not important once you are on meds
Your TSH doesn't tell your brain anything. TSH is made by the pituitary (in the brain) and it does just what it says on the box - nothing more, nothing less. TSH : Thyroid Stimulating Hormone. It is sent to stimulate the thyroid gland to make more hormone when the pituitary senses that there's not enough in the blood.
It has no contact with your brain, your heart, your bones or anything else. It's just a Messenger boy between your pituitary and your thyroid. And, even then it can get it wrong. Because the pituitary only detects what's in the blood, not what's getting into the cells. So, you could have a lot in the blood, which means the TSH is low, but you're still hypo, because it's not getting into the cells.
It really is a pretty useless test. Even the man that invented it now says it's pretty useless, and was never intended to stand alone, but to be part of a panel of tests to test thyroid. Just refuse. Tell them you'll take your chances. It's not much of a risk! lol
This is very interesting as I also see a private doctor who prescribes Erfa and I am getting the same hassle about a suppressed TSH. He wants to try and wean me off the Erfa. I don't think so, no way am I prepared to go back to how I was. I am also humming and hah-ing about cancelling my next appointment and going it alone. I just upped my dose to 3 grains (180mcg) to see what happened after my last results of 15 and 6, same ranges as yours with suppressed TSH just like you. I feel really well wand think I am probably "there" on optimal dosage now. I suspect we see the same person.
Thanks for sharing that. I think I might sneak my dose up a wee bit too. I suspect my doctor (our doctor maybe!) is probably having to toe the establishment line a little bit so he doesn't get in trouble with the gmc. It's crazy if we go it alone though I guess that means buying our own erfa over the Internet?
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if we go it alone though I guess that means buying our own erfa over the Internet?
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