I am now desperate to find a doctor who will not just treat on TSH. I just missed out on seeing Dr Skinner and since November I have been trying to find another doctor. My GP is anxious to refer me, but I am not prepared to go back to my local hospital.
I have been very unwell over the last couple of weeks and increased my levo to 150mcg, which seems to have eased the symptoms, but my GP considered me over-medicated on 100mcg, because my TSH was suppressed, even though my TSH is always suppressed as soon as I take any form of thyroid medication, and my FT4 was only 30% into the range.
After nine years struggling to get anything like proper treatment (I still don't have a diagnosis despite 14 endo appointments over a four year period) I am not prepared to give up now.
I am prepared to pay and I am prepared to travel.
Can anyone help?
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Ansteynomad
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I have, but there wasn't really enough information on it in terms of what they might do. I'm looking for a personal recommendation really.
I've currently got 100mcg of levo out of my GP and the balance is coming from the stash I have built up. Once I got up to 125mcg I was symptom free for three months, but I know GP fears he is out of his depth and wants to refer me.
What I can't do it take the risk of seeing someone who endorses GP's view, because I know that lowering the dose won't work - we tried it last autumn.
Since Dr Skinner passed away I've been seeing another Dr in N. London who as well as being recommended is also on the TUK list. He isn't TSH driven either so is happy to run with a suppressed (not undetectable) TSH and is very thorough. A nice man too!
You need a FT3 test, it is quite ,likely that your T4 may be OK, should be in top third of range/ if the FT3 is well below range, it often needs to be top of range. You may benefit from some, a little T3 too. Start very slowly at just 10mcg, to lessen side effects, then probably 20mcg but it depends on the blood tests. It does lower the TSH and helps many symptoms ,especially weight.
Knowing my own experiences, I would say the blood tests and even going it alone on frequent blood tests, in some cases may be preferable, as a last resort only. To over dose with thyroid meds., especially T3 is dangerous, they are very strong but you need to feel OK too.
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