I'm due to see my GP next week and I wondered if you would be able to give me your opinion on how to proceed please?
When I was first diagnosed with hypothyroidism I was taking levothyroxine and was OK for a few years but then not so good so my private doctor added in some NDT [Erfa] which helped a lot. I switched to Erfa only but due to cost have I have been using Metavive (a whole thyroid gland supplement) and been fine on it. [In retrospect I should have just increased the levo first as that may have been all I needed to do].
My problem is that the introduction of T3 suppressed my TSH and, in itself, does not bother me as long as my T3 and T4 levels are good, but I get the usual thing from my GP about the risks of suppressed TSH whilst ignoring my T3 and T4 levels, and she is calling me sub-clinically hyperthyroid. The administrators on this site don't seem bothered by the suppressed TSH.
When I was taking 60 mg alternating with 75 mg Metavive (using the old capsule sizes before the reformulation) my TSH was less than 0.03, T4 was 13.2 [9-19] and T3 5.7 [2.6-5.7] and I felt OK but I agreed to reduce my dose to see what effect it had. Partly my reason was to see if I could raise my TSH to a detectable level which would satisfy her.
I would be happy leaving things alone with the higher dose but I want the TSH to go up a little as I understand from Jim111 that TSH is needed to convert T4 into T3 in the tissues and suppression affects this.
I went down only slightly to 60 mg Metavive daily and my T4 went from 13.2 to 11.6 and T3 from 5.7 to 3.6 but the TSH was still below range. I didn't actually feel much different, perhaps a little more tired.
My genome indicates that I am a poor converter of T4 to T3. My other vitamin and ferritin levels are good.
If my TSH remains suppressed due to taking Metavive, but I need TSH to aid conversion in the tissues, I'm not sure what to do. Should I try reintroducing levo with only a tiny bit of Metavive and see how I feel?
I would appreciate your opinion please.
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Guineapiggy
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Guineapiggy 'she is calling me sub-clinically hyperthyroid.
This is incorrect terminology. Hyperthyroid is when the thyroid itself produces too much hormone, which would be indicated by high levels of FT4 and FT3. A more correct term would be 'over nedicated'. But a supressed TSH does not necessarily mean overmedicated anyway. Again, that would be indicated by high FT4/FT3 levels. Unfortunately, the vast majority of doctors have not had sufficient training on thyroid issues to know what they are talking about.
The administrators on this site don't seem bothered by the suppressed TSH.'
Whilst the admin here have many, many years of gained knowledge and understanding of thyroid issues between them, none are medically qualified. So your doctor won't be impressed if you reference the admin here when you discuss your thyroid medication with her
The endo and my GP both used the same term, as ususl lookong at the TSH only and not bothering with the other readings.
I wasn't criticising the admin staff. I know I have seen comments where they explain that taking T3 suppresses TSH but that is the price to pay for feeling well. My GP worked with an endo so should know this happens.
Unfortunately, even endos do not understand how thyroid hormones work. I am constantly amazed at the rubbish spouted by endos that patients report here. We assume that endos are the experts. But when it comes to thyroid issues, the vast majority have no idea what they are talking about.
Not usually directly but through its stimulatory properties on thyroid hormone production and effects of a different TSH isoform on bone metabolism. There may well be others. Conversion of T4 to T3 is enzyme-linked, enzyme activity also being indirectly affected by TSH, through the thyroid's T4 and T3 production.
TSH stimulates the production of the deiodinase proteins that convert T4 to T3. But, if taking T3 suppresses TSH, it's for a reason: you don't need it. If you're taking T3 and the pituitary is satisfied that there is enough T3 in the blood, it will stop producing TSH. As simple as that. And, there's no way round it. If you reduce your T3 to raise the TSH, you will not have enough T3 in the blood to make you well.
And, most importantly, raising the TSH by reducing T3 will not guarantee that you will be capable of converting enough T4 to T3 to meet your needs. So, ignorant doctors apart, what's the point?
Yes, and I've just explained to you why that isn't an issue. I wasn't talking about the uptake of T3, either. Taking T3 or converting T4 in the tissues comes to the same thing.
Sorry, I've just realised what you meant, there. But, if absorption at a cellular level is an issue for you, your uptake of T4 won't be good, either, so you won't have any T4 to convert to T3 anyway. And that's a completely different problem, the solution to which is taking large doses of exogenous T3 to flood the receptors. So, you still don't have to worry about - or need - TSH.
In euthyroidism a FT4/FT3 ratio around 3/1 with all parameters well ito the reference ranges indicates adequate conversion. On T4 therapy with no thyroid, a ratio up to 4/1 or a little higher with the same needs as above again should be OK. Anything above 4 to 4.5/1 indicates poor conversion. But one shouldn't be too demanding - everyone has their own responses. Feeling well is the aim.
Once you take replacement especially with amounts of T3 this lowers the TSH.
The gland doesn’t need to make extra hormones it coming from on other source.
The TSH responds better in some but even in healthy functioning people it takes time and once the thyroid is dysfunctional or been suppressed for a period of time is can stay low long term.
Unfortunately the TSH is only likely to rise if FT4 & FT3 are low enough for long enough & even then there no guarantee.
I know this as I have a nodule which elevated my FT4 & FT3. Doctors didn’t treat it and my levels were fractional high TSH suppressed for a prolonged time.
When I was diagnosed I was put on an antithyroid, the specialist was keen for the TSH to rise so kept increasing the dose.
At one stage my FT4 & FT3 were low in range & on edge of going under but he still wanted to increase the antithyroid because TSH was low. We agreed to keep on same dose and my levels were kept borderline low for several months & TSH still didn’t rise into range.
The doctor would have been happy to keep reducing levels to ‘make’ TSH respond but if the TSH isn’t going to be a reflection of thyroid levels you’re going to be hypothyroid for likely a long time to ensure a unreliable measurement is a number thats acceptable to doctor.
The research supports its high thyroid levels usually associated with low TSH which is the cause of longterm problems but this isn’t something you doctor will acknowledge as they are instructed focus on TSH in a one size fits all guide.
When doctors don’t follow or deviate from the expected steps they are open to fault (and possible disciplinary / legal action) NICE guidelines are the steps that GP are recommended to follow. In the strictest sense it is not compulsory and if working with patients can use their judgement to vary treatment if appropriately justifiable.
Could you not state (put it writing if necessary) you feel well with FT4 & FT3 within range and believe your TSH is no longer an true reflection of status. You are fully aware of the risks associated with low TSH and a willing to accept them to be well and function daily with good (not over range) levels of FT4 & FT3.
Thanks. Because the 25 mg capsule is so small it is difficult to split, but alternating it gave a good T3 result and I felt OK. As Metavive are all capsules I have to judge by eye.
I did try gluten and dairy free for 6 months but it made no difference.
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