I hope it is alright, I am asking this on behalf of my brother who along with me has Hashimoto’s.
My brother says.:
My Tsh is apparently unmeasurable as done by my consultant Endo (NHS) and has been so for some years.
I take T4 150mg daily and T3 15mg daily, the later split into 3 equal doses of 5.
I am gluten and dairy free and ostensibly have no obvious symptoms other than no measure of TSH ie. Below 0.02 my T4 and T3 are within range.
My Endo and I are aware that prolonged suppression of TSH can give rise to risk of atrial fibrillation and stroke. For those reasons I would like to bring my TSH level to at least within the lowest range.
Can I achieve that my reducing/modifying my T4 dose whilst not reducing my T3 as this has significantly improved the quality of my life.
Any thoughts much appreciated.
Written by
Mothebear
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If you feel well I really wouldn't adjust anything for the sake of getting your TSH back in range as there is every chance that even if you stopped taking T3 it could take months for your TSH to react.
Mine is also at 0.05 and has been since starting T3, much more important to feel well and as long as your frees are within range you are at a much lower risk for heart or stroke issues than you would be with very low frees
TSH is just the opinion of your pituitary gland and the feedback loop which is often corrupted
Sounds like me…Drs seem to have been happy to accept these under 0.05 TSH results for years on T4/T3 dose combo, and then suddenly get nervous even when the ‘patient been advised about AF/ osteoporosis’ statement logged onto notes. I thought my GP had agreed to disagree at a rare face to face appointment a month ago that I did not think I was ‘overmedicated on levo’, but with a 0.02 result next day he changed the prescription down from 100 to 75, knowing there was no way in the surgery system to talk to him by phone for at least 3 weeks! Rightly or wrongly I thought I’d do the 75 levo/ 15 T3 ( split into 3 doses) to shut him up…a month in and fibromyalgia pain bad, so he will have to reverse his experiment! My frees, not tested within NHS for years, tend to be 40-50% sort of range; unlike my Gp I am not expecting my TSH to rise into range, or even above 0.05. Oddly first time ever offered a referral to an NHS endocrinologist, which I am hoping will get accepted out of Trust, I’ve had to rely on private endos. but it’s costly when alternatives (Roseway Labs.) can do the job just as well for a fraction of the cost.
Doctors dont seem able/willing to differentiate between being hyperthyroid, where TSH is low or suppressed and both frees are often well over range, which is serious, can cause osteoporosis and AF and often needs treatment via antithyroid drugs like Carbimazole or a thyroidectomy.
Or being hypothyroid, being on sufficient Levo, NDT or Levo/ T3, where TSH is low or suppressed, because the pituitary senses there is ample hormone in the body so it doesnt need to signal the thyroid to produce any more, and where both frees are safely in range.
Many patients on Levo will have very low TSH and its even more common on Levo/ T3. T3 often suppresses TSH. Its one of the main issues with doctors dosing via TSH, its not accurate and becomes pretty much unimportant once on thyroid replacement.
But doctors are taught in Med school to diagnose and dose this way, and many are extremely fixated on TSH. Its very flawed and needs to change. And being hyperthyroid and hypothyroid with low TSH are clubbed together.
The more important issue is how your brother feels? If he is well then sacrificing some of that wellness in order to balance the numbers doesnt seem like a good deal. TSH can be very slow to respond and some people's never does come into range, especially if its been suppressed for long time.
Using this approach leaves your brother facing ever decreasing doses, with ever more decreasing health, trying to pursue the end of the rainbow TSH. With no guarantees he'll ever attain it.
TSH has nothing to do with hearts or bones. That is a gross misunderstanding on the part of the medical profession because they cannot - or will not - see the difference between a suppressed TSH caused by the high FT3 level in Graves', and the suppressed TSH caused by exogenous T3. In the case of Graves' it is the high FT3 that causes the problems, not the low TSH. The TSH is low in both cases because that is what T3 does: lowers/suppresses TSH. But it's highly unlikely that anyone would take enough T3 to cause heart attacks or osteoporosis, they would feel very uncomfortable long before it got to that point - ask anyone with Graves'!
Why doctors cannot accept the logic of this, I really don't know. But it's just crazy for anyone to make themselves ill just to satisfy the uneducated ego of a doctor. My TSH has been suppressed for years, and woe betide any doctor that suggests I try reducing my dose to raise it.
at the end of the day , the only way to find out if someone can have TSH a little higher without affecting quality of life is ... suck it and see, by trying a very slightly lower dose of either T4 or T3 , do it very gradually (allow at least 3 months on each lower dose, the longer the better) .... treat it as long term experiment , bearing in mind that a TSH that has been low for a long time may take many months to even think about rising . and that a lower dose of levo can sometimes feel lousy for the first 5/6 wks then things gradually improve.
( by 'very slightly lower' i mean lowering by no more than eg 12.5mcg Levo , or 2.5mcg T3 at a time)
one or two people on here have managed (by making fine adjustments) to find a balance point in dose that works for them ie. keeps symptoms away and keeps TSH just inside the bottom end of the range , or at least over 0.05....... but very many others simply can't make this work .
these posts may be interesting reading for your bro:
Thank you all so very much. My brother has found your answers very helpful and he had a subsequent conversation with his consultant who suggested he could drop his T4….as he had put it up when he increased my brother’s T3….though suggested he should actually have dropped it!!
Hi Your TSH is supressed because you take T3 be careful when changing don't give in to their nagging I have been taking T3 60 per day for the last 20 years before that it was higher and the only adverse reaction is I'm always hot so with the hot weather I decided to cut down by 20 lio within 6 weeks I had a auto immune reaction skin rash in groin progressing to the belly and top of legs sore tongue I already have Lichen Sclerosis of the vulva ,so I think this is Lichen Planus Cant get to see a Dermatologist even privately takes over a month. I'd be glad of any advice regarding Lichen Planus but I'm sure its down to cutting down the T3
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