Please or to access all these features

Autoimmune disease

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

What next? Fighting for a diagnosis (thyroid)

3 replies

Okite · 13/06/2017 18:53

So, background is I have pernicious anaemia, am being treated but still feel dreadful.
I had a private thyroid test done which showed out of range TSH and TGAB but in-range ft3, ft4 and the other antibody, can't remember the name of it.
Saw an endocrinologist who was utterly useless and said I wasn't out of range enough, the antibodies could be down to pernicious anaemia anyway, so she wouldn't treat unless I got much worse. Hmm
She did recommend checking my cortisol level as that had never been done. Had that done and it's totally normal.
Right, that's where I am. I remain convinced I have a thyroid issue. I think the blood results indicate that. The Gp refuses to take note of the private result because they don't know how it was stored and processed and yet won't retest me themselves as the last tsh they did was 'fine' (2.5ish).
I feel like there's a brick wall whichever way I turn. I've no idea how to get either the gp or the endo to take it seriously. I can't believe their approach is just to let me deteriorate until I'm sufficiently 'bad' to treat!
Has anyone got any ideas, suggestions, anything?

OP posts:
Itsallgone · 14/06/2017 07:53

Get a second opinion? Do you know your ferritin, vit D, folate and b12 status? The folks on this forum might be able to advise.healthunlocked.com/thyroiduk

high TSH with low FT4 and FT3 shod be treated as far as I'm aware especially if TSH is out of range. Mine is treated on symptoms even though I'm just in range.

Okite · 15/06/2017 05:51

Bit d has just been tested and is fine. I self-inject B12 regularly. Haven't had folate and ferritin done recently but levels were ok last time I had them checked (they were quite low initially so I have been supplementing).

OP posts:
SaltyMyDear · 15/06/2017 05:57

Go to a really good nutritionist?

I'm treating my thyroid condition this way. I got private blood tests done on her advice and am on a very specific diet and it's helped an awful lot.

If you're in London PM me and I'll tell you her name.

New posts on this thread. Refresh page