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If you have an underactive thyroid, do you know the cause?

84 replies

badgersbadgerseverywhere · 20/02/2026 15:42

I had a telephone consultation with a GP today about something else and I mentioned I have several autoimmune diseases including hypothyroidism. He asked why I think it’s autoimmune, as nothing in my notes says that. I do have diagnosed hypothyroidism (been on levothyroxine for 10 years plus) but I’ve never actually been tested for Hashimoto’s to my knowledge.

Does this matter? Should I request a blood test to identify why my thyroid is underactive? I’m very confused by the GP because it was my understanding that most underactive thyroid disease in this country is caused by the body attack itself, and I don’t know why he was disagreeing with my assumption.

OP posts:
PeonyPatch · 23/02/2026 12:54

Yeah if you have one autoimmune condition, chances are you have a lot of others too

user2255679541 · 23/02/2026 15:46

PeonyPatch · 23/02/2026 12:54

Yeah if you have one autoimmune condition, chances are you have a lot of others too

If you have one you are more at risk of developing others, but it isn't always a sure thing. I've been hypothyroid for 32 years and, so far at least (knock on wood), haven't developed any others.

PeonyPatch · 23/02/2026 15:50

user2255679541 · 23/02/2026 15:46

If you have one you are more at risk of developing others, but it isn't always a sure thing. I've been hypothyroid for 32 years and, so far at least (knock on wood), haven't developed any others.

Well, that’s why I said chances are…I am pleased you have no others.

Interested in this thread?

Then you might like threads about this subject:

Firefly1987 · 23/02/2026 17:33

user2255679541 · 23/02/2026 15:46

If you have one you are more at risk of developing others, but it isn't always a sure thing. I've been hypothyroid for 32 years and, so far at least (knock on wood), haven't developed any others.

My nan lived to the ripe old age of 97 and I know she had an underactive thyroid, but nothing else as far as I know. I totally wouldn't be surprised if I end up getting more though. I've already developed Raynaud's. Asked my doc about other autoimmune diseases and he said yeah it's possible but there are like 100 of them so we wouldn't test unless you had symptoms of something else.

HappyValentinesDogtanian · 24/02/2026 05:42

Firefly1987 · 23/02/2026 00:02

Not the PP so hope you don't mind me asking but you seem super knowledgeable-my TSH was 10 when I was diagnosed yet T4 has always been in the normal range. Don't know what to make of that? Does it mean I'm not as underactive as I would be if my T4 was out of range as well?

I’m sorry, I didn’t see this before. I’m not really super knowledgeable, it’s just what turned out to be the issue with mine as the NHS is notorious for not treating thyroid issues appropriately.

The Thyroid UK forms can be really helpful for interpreting blood test results. But, and really don’t take my opinion on this, it might be that it’s still early days and your thyroid is struggling hence sending the signal for more T4 (the high TSH) but your body is actually then creating that T4, or it could be that you need higher T4 then you’ve currently got, for example.

if you’re still struggling with symptoms, I think that it’s worth getting a full thyroid panel done and then having the results interpreted properly.

https://thyroiduk.org/get-support/thyroid-uk-support/online-thyroid-community/

user2255679541 · 24/02/2026 15:15

Following on to what @HappyValentinesDogtanian said, I think if you're on thyroid meds and don't feel optimal, it's worth doing whatever you can - insisting, begging, bullying - to get them to test your T3 levels. The NHS isn't keen on this, but I was told for years that my meds were adequate and my tests were normal, so my thyroid couldn't be the reason I felt so crap. When a doctor finally ran my T3, it turned out it was low. When that was treated I finally felt like myself again.

whoTFismadelaine · 24/02/2026 15:35

I am interested in whether anyone has ever had their pituitary checked, ie a scan, when they discover thyroid issues? I only ever hear about nodules on the thyroid and having that removed rather than any attention paid to the pituitary and wondered why?

user2255679541 · 24/02/2026 16:44

whoTFismadelaine · 24/02/2026 15:35

I am interested in whether anyone has ever had their pituitary checked, ie a scan, when they discover thyroid issues? I only ever hear about nodules on the thyroid and having that removed rather than any attention paid to the pituitary and wondered why?

I believe that's only necessary when secondary hypothyroidism is suspected, in which case TSH is low or normal, with low T4. That said, my doctor does test my prolactin levels when I have bloods done.

Firefly1987 · 24/02/2026 22:08

HappyValentinesDogtanian · 24/02/2026 05:42

I’m sorry, I didn’t see this before. I’m not really super knowledgeable, it’s just what turned out to be the issue with mine as the NHS is notorious for not treating thyroid issues appropriately.

The Thyroid UK forms can be really helpful for interpreting blood test results. But, and really don’t take my opinion on this, it might be that it’s still early days and your thyroid is struggling hence sending the signal for more T4 (the high TSH) but your body is actually then creating that T4, or it could be that you need higher T4 then you’ve currently got, for example.

if you’re still struggling with symptoms, I think that it’s worth getting a full thyroid panel done and then having the results interpreted properly.

https://thyroiduk.org/get-support/thyroid-uk-support/online-thyroid-community/

Edited

Thanks for the link! I think I'll be getting an adjustment to my meds soon. I was only started on a low dose of 50mcg-but my doctor actually has taken it pretty seriously thankfully. I was super anxious to go on a higher dose to begin with so we started quite low. Will defo look further into it if an increase in meds doesn't help. I think it will-I'm still outside the range and hopefully once I get below 2 I'll be like a whole different person!

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