Thyroid function

[KR2013]

Hoping someone here may have some relevant experiences! For reference, I have rheumatoid arthritis (diagnosed at 17), and suffered from postpartum thyroiditis - when I was seen for this at the hospital, they tested for autoantibodies and I tested positive, so was warned I would be likely to end up with an under active thyroid at some point in the future. My mum also has an under active thyroid, which began around the age I am now (early 40s).

I've recently had very irregular periods and heavier bleeding than usual, and my GP tested my thyroid function. Last month, my TSH was 6.4 (it's always been 2.something when tested previously), but T4 was normal. I was retested yesterday and they've said it's now back to normal, although TSH is still showing at 5.2. I can see the lab reference values say normal is up to 5.5, but from looking online, it looks like 5.2 is still higher than it should be?

I'm planning on having a follow up with my GP anyway, but wanted to see what other people's experiences have been - could a TSH of 6.4 and/or 5.2 be causing any symptoms, or is it likely symptoms are unrelated? From previous health issues I'm used to having to sometimes push despite being told things are normal/nothing to worry about etc, but also like to pick my battles 😅

You'll find many here with an underactive thyroid. I have Hashimoto's (the autoimmune name for it). Your TSH should be around 1-1.5. 5.2 means your thyroid gland is struggling to produce enough active thyroid hormone (which is T3, not T4). T4 is the storage form of the hormone. Most people convert this as needed into T3, but some of us have a genetic defect meaning we don't convert adequately. Doctors however may even think your raised TSH is 'fine', that's because they have a crazy range for TSH and you can be quite ill! They're far too focused on lab numbers and not symptoms.

I had quite high T4 level but not a lot of T3 and I was very symptomatic for hypothyroidism (my TSH was 4.95 when diagnosed). My symptoms were crushing fatigue, hair falling out, dry skin, constipation, splitting and weak fingernails and probably other things I've forgotten now (was diagnosed 9 years ago).

You need to push to start Levothyroxine. Underactive thyroid won't improve on its own, as it's autoimmune you have antibodies destroying your own thyroid tissue, so it will get worse. Also you could consider going gluten free as that does help some people with inflammation.

Also consider getting tests for Vit D, B12, folate and ferritin as these are often low in people with hypothyroidism.

Edited to add: T3 is rarely tested so most doctors are blind to knowing whether you are deficient in it. You can buy fingerprick blood tests for the whole thyroid panel though, so you could do that if you wanted to (e.g. Medichecks)

I'd second tests for anaemia and B12 - often goes hand in hand with thyroid fluctuations. If results are on the line push for something, as the cut off levels are notoriously lower than most other countries' as it is, so women spend years losing hair, being run into the ground getting increasingly sick compeltely avoidably and being palmed off with antidepressants. The only way to get full iron stores back after years of being run down is a full iron transfusion and NHS often misses first preventative steps. So if it is low and you suspect may have been anemic for a while you might consider paying for one of these privately. You can also get B12 injections in pharmacies but if it is low you will need loading doses first before they make a huge difference. The NHS tends to do this to bump you up to the correct levels, immediately do a blood test showing "high" B12 and then cut you off from having any more, so you will have to pay for the top up doses if you have pernicious anaemia.

FWIW I had overactive thyroid and thyrotoxicosis. Where I am in the country there is apparently only 1 epidemiologist for the entire county so I had a waiting list of 14 months to be seen. Luckily my GP was able to prescribe carbimazole and proprananol as I was dangerously underweight and couldn't eat or leave my bed without collapsing. Anything related to the endochrine system has to be near death before you will be referred, from my experience.

But yay, men get free viagra so who's complaining!?