Experiences of diagnosis of subclinical hypothyroidism?

[SinkGirl]

I’ve had many symptoms of hypothyroidism for years. I’ve been tracking my levels with private blood tests because the GPs weren’t interested - my levels were very up and down, TSH varied from 1.74 up to 3.5 most of the time but with one 5.95. FT4 always low in range.

I got my GP to retest me in August and my TSH was 1.4 so that was that.

I know that the NICE guidelines say that if you have a TSH between 4 and 10 you can ask for a trial of treatment as “subclinical hypothyroidism”. I’ve also read that it should be under 2.5 if you’re trying to conceive which is potentially on the cards so that’s another worry.

I’ve been feeling really unwell recently so I did a test a month ago - my TSH was 3.9 (0.23 - 4.2), FT4 was 13.4 (12-22), FT3 was 4.37 (3.1-6.8), antibodies low.

I repeated the test on Monday hoping my TSH would be over 4, but it’s almost identical. TSH was 3.87, FT4 was 13.9, FT3 was 3.91, this one included TT4 which was 75.7 (66-181), antibodies still low.

I am desperate for help but I don’t think the GP will agree - I know they think that I’m crazy for doing private tests but I don’t know what else to do.

Has anyone in the U.K. been able to trial treatment at this sort of level? I know in the US, Australia, most of Europe i would be eligible for treatment which is frustrating.

I am going to ask for them to repeat the test and hope the result is consistent with what I’ve got here. I’ve found that my TSH seems to drop mid cycle, which is when they did the last one, so will avoid that for testing.

I think the NICE guidelines say to start treatment if symptomatic, which you are. Have you mentioned the guidelines to the GP?

My TSH was either 5 or 7 when I was started medication, my GP suggested it straight away.

Have you had any other blood tests?

Yes, loads - vitamin D was low but checked it in the test today and it’s much better (96.7 now, it was 19.9 at the lowest).

Serum B12 was 254 and I have neuro symptoms but my GP insists it can’t possibly be that - I had an active B12 test today that was 70.2 (65 a month ago) so I think that’s pretty much ruled out although I may not be using it properly from what I’ve read.

Other tests are fine except for MCH that’s consistently just above normal range and calcium that was just below normal range last time it was checked (but vit d was also low).

NICE guidelines say they can consider a trial if TSH is between 4 and 10 and you’re symptomatic so it seems my only option is waiting even longer as it’s creeping up I think.

I've been sub-clinically hypothyroid for about 2 years (with near identical results to yours) and my GP has refused to do anything, despite having a number of symptoms - weight gain, tiredness, anaemia, itchy skin etc.

It was fluke that I found out my thyroid wasn't 'normal' when I paid for private allergy testing (because of insanely itchy skin and hives) and they mentioned that I was sub-clinically hypothyroid (my GP knew but hadn't mentioned it, despite several appointments to discuss my lethargy, unexplained weight gain, messed up periods, anaemia etc.). As part of the allergy testing the doctor suggested excluding a variety of things from my diet, gluten being the first, which I did and the skin issues stopped within a week. Over the following few months my energy levels have increased and I'm (very, very slowly) losing the weight is gained. I asked the GP to test my thyroid about 6 months ago and it's now just within the normal range, but I'm putting it down to the gluten-free diet I now have. According to the private doctor I saw gluten issues and thyroid problems often go hand in hand and therefore a gluten free diet can help control your thyroid. At the moment I'm happy enough to no longer pester the GP to do something, but if for any reason the gluten stops working, I'll be straight back asking for something to be done, there's no way I'm going back to feeling how I did (and it's only now I feel better that I realise just how bad I felt before).

If your GP is really resisting, perhaps try excluding gluten and re-test in a few months?

Jammy have you had your thyroid antibodies checked? I believe gluten is usually an issue with hashimotos specifically (autoimmune thyroid disease). My antibodies are low - at one point one of them was rising each test (got to 22, normal range is up to 34) then they dropped and have stayed low.

I’ve tried cutting out gluten completely and it didn’t help sadly. I don’t know what the hell it is at this point, I was convinced it was hypothyroidism, now I’m not 100% sure but my levels are so close to the NICE cut off that I think it would be worth trying.

My GP doesn’t trust the private tests but I now have two tests a month apart from two different companies that are nearly identical so I hope she will at least agree to repeat the test.

I can’t remember what my exact numbers were but this was picked up for me when having issues TTC. The testing GP put me on a small dose of levothyroxinr while TTC to cover all bases - cue some very confused conversations with other GPs when repeat prescriptions were needed because obviously I was subclinical. Have you discussed TTC soon with the GP or can you find one more sympathetic?

I’m going to talk to her about it when I see her in a couple of weeks. I know she thinks I shouldn’t be considering TTC at the moment because my health is bad and I already have twins with ASD but it’s a bit chicken and egg, since a trial of treatment may help me feel much better and would also mean it’s safer for me to TTC.

Everything I’ve read says that a TSH above 2.5 increases the risk of miscarriage, and of neurodevelopmental issues. It says that if you have hypothyroidism (or subclinical) TSH should be under 2.5 before ttc, but it doesn’t say that’s the case if you don’t have a diagnosis. I need to keep hunting for something clearer to make my case I guess.

She’s very nice and the most sympathetic GP in my practice, and I’ve spoken to her at length about what’s going on so I’m hoping if I stick with it we will get somewhere. At the moment I’m on antidepressants that she strongly suggested I try - I’m not depressed and they’re not making any difference but at least I can say I’ve done it.