To want to trial treatment for hypothyroidism?

[SinkGirl]

My health has been shocking for many years, but especially the last decade. I have pretty much every known symptom of hypothyroidism. In the past I’ve asked my doctors to check it and my levels have been fine (eg TSH 1.3 - 1.7, FT4 always between 12 and 15 so not great but not awful).

Things deteriorated in September last year so I started doing private thyroid blood tests and my levels are all over the shop. In May I did several tests to try and see how variable my levels are - Tsh went from 5.95 to 1.6 and back up to 3.7 in the course of a month. Other levels are similarly all over the shop, especially FT3. TPO antibodies were rising, went to 22.4 but then back down to around 12.

My GP has agreed to run another load of tests in a few weeks. I’ve got another private blood test to do a week or so before so that at least if there’s a lot of variability I can show that.

I am utterly desperate to trial treatment - that’s all I want, to try it, and if my levels go out of range or it doesn’t help I can stop.

I can barely look after my children, my marriage is on the brink of collapse since I have zero sex drive and can’t even stand to be touched. My brain doesn’t work properly, I’m in constant pain.

If I don’t get any joy with the GP I need to find a specialist I guess, although I can’t really afford to do that, and no guarantees they’ll help either.

Everything I’ve read says that this level variation isn’t normal, and after having years of tests showing my Tsh level mid 1s, surely seeing it jumping up like this shows it’s not normal for me either.

If anyone has any advice I’d really appreciate it.

I just can’t cope with it any more. It was bad enough when I lost my career, but I found a way to function that mainly involved not doing very much of anything. Then I got pregnant and it ended up being twins, and the pregnancy nearly finished me off to be honest. Now I have two children and I’m not being the mother they deserve because I’m so unwell. I’m just so tired of this, I need to do something about it.

Forgot to say, I rarely eat gluten (not by design, I just don’t eat much of it) - someone suggested I should try eating more prior to my last blood test as not eating it might be suppressing my antibody levels. But my levels actually went down from the previous test, so who the hell knows! Feels like I’m fumbling in the dark with a torch with dodgy batteries.

You have to eat gluten for two meals a day at least for six weeks before having bloods done for coeliacs and even then you can get false negatives.

Following this with interest Op. V similar position. ME/CFS & dodgy thyroid/adrenals. Too tired to type more. Housebound in bed

Feeling a little better last six months without dairy & gluten, but boy do I suffer if any gluten sneaks in.

Had 2 negative coeliac tests already & will not be trying it again.

Hmm, maybe I should raise it again with my GP (I was eating gluten at the time but probably nowhere near that much).

I’m so sorry Keto, I know exactly how this feels and it’s horrendous that we have to live like this for so long. After speaking to a lot of women who’ve had similar experiences, and seeing the way my blood test results have gone this year so far, I’m utterly convinced that within a few years at the latest my results will fly way out of normal range completely, unless I can convince someone to help me before the damage is done.

Just sent a blood test off today - will see how it comes back in a few days. Based on past results it feels like a lottery - could be normal, could be high, maybe I’ll get lucky and this one will demonstrate how absolutely awful I feel day to day. It’s so frustrating when something so closely matches your symptoms and the tests / UK guidelines seem to be letting so many people down:

Got my private results back - TSH mid 3s again, everything else in bottom half of normal range. Sigh.