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

[badgersbadgerseverywhere]

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.

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.

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

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/

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.

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.

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!

Trauma has a lot to do with it. There will be a predisposition, but the trigger is very often trauma or stress.

Trauma and stress are triggers - it's all connected to the lymphatic system and your hormones (why it has been so badly under researched as men don't believe in them being important, despite them making men more violent).

I can see why you're confused. My understanding is that Hashimoto's is the most common cause of hypothyroidism in the UK, but not everyone with an underactive thyroid will have had antibody testing, especially if they've been stable on levothyroxine for years.

The GP may simply have been distinguishing between "hypothyroidism" (which is what's diagnosed and recorded) and "Hashimoto's" (which would usually need antibody tests to confirm). If there isn't a documented diagnosis of Hashimoto's in your notes, he may not have wanted to assume the cause.

Whether it matters now is another question. If your treatment wouldn't change, some GPs may not see much value in testing years later. On the other hand, if you have several autoimmune conditions, I can understand wanting to know whether your thyroid disease is autoimmune too.

It sounds as though the GP was distinguishing between having an underactive thyroid and knowing the specific cause of it.

Many cases of hypothyroidism are thought to be autoimmune, but unless antibody tests were done, it may never have been formally confirmed as Hashimoto's.

Given that you already have other autoimmune conditions, it's understandable to wonder whether that's the case. It might be worth asking whether further testing would add anything useful to your overall care or understanding of your health.

Neither my son, nor I tested positive for antibodies. My nan, mum and sister didn’t/haven’t had the antibody test.

Mine is raggedy on one side and my son’s is too small. Rest of the family didn’t get ultrasounds.

I just presumed we had a genetically dodgy thyroid gene somewhere in the pool.

My hashimotos HT came about following a period of prolonged, sustained stress.

I have hypothyroidism becuase I don’t have a thyroid. I had a very helpful person on a site tell me I could reverse my hypothyroidism by eating better….i would then not need thyroxine ever again.

yes, mine is auto immune