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.

Everyone seems different with thyroxine. There’s lots of other factors going on from what I’ve learned over the years. Eg when I was on hrt I felt like Alice in wonderland, taking a sip of this and bite of this - oral utrogetstan seemed to mean I needed less and less again when I tried testosterone. Went down to 100. Now I’m off all that and on tamoxifen I’m back up to 125 with a couple of extra 25s a week. I’m only 8.5 stone!

i know other people who seem to only need 100 and others who need 200.

as a result of all the above shenanigans I do routinely take my thyroxine over an hour before breakfast in a large glass of water. Often if i wake in the night. I’ve found I’ve more consistency that way. (When younger I didn’t take much notice but would often have varying energy levels as a result.)

Loads of other things interfere with absorption - always read the leaflet!

Ask about taking inositol for pcos. I’d also ask about taking a prenatal vitamin- they often have iodine in them which is really important for pregnancy but I’ve no idea if affects hashis

you may find you need to spend a long time getting your hormones into check before conception but it will be worth it.

also all the wellness relaxation stuff you can manage. It does help to calm the nervous system (I’ve been quite stunned by how much vagus nerve things help health. It’s how I’m managing menopause and tamoxifen.) imo breath work is the easiest and cheapest option. There’s a free app here: https://buteykoclinic.com/

after I heard about the rheumatology drug trial for hypothyroid patients still experiencing symptoms, and how some autoimmune diseases are being helped by vagal nerve implants, it’s did make me wonder…

my thyroid won’t magically re start but dialling down inflammation will help lots.

I was diagnosed 22 years ago with Hashimoto's. I saw one of the best endocrinologists at that time (NHS) and was given the best treatment. He spotted goitre immediately on seeing me. My dad's side of the family all have/had thyroid related conditions. It's not been a surprise that I would end up with something...I have children but none are female so it's going to be interesting to see if they develop a thyroid condition. I really hope not!

Well, if you are getting private treatment then you'll definitely be getting the very best of care. Quite right. I just wish the NHS care was consistent across the whole of the UK. Checking my levels more than once a year is not necessary, it's being managed as well as it can be. My fatigue may be unrelated to the Hashimoto's as I also have other chronic conditions which can explain similar symptoms. No easy answers unfortunately 😕

Trial for anyone interested:

https://www.triumphtrial.co.uk/

i was ruled out due to previous Bc

I found out I had an under active thyroid when I was 17, I had just had a baby at 16 after getting pregnant at 15.
Bloods taken again a year later and the thyroid had gone back to normal

It's often a genetic predisposition, a loaded gun & it can smoulder for years then lifestyle/diet, trauma pulls the trigger. I have a few health issues and my genetic profile showed these!

I’m surprised by your attitude of checking once a year as unnecessary but that’s your view I guess. For anyone with thyroid issues, I think it needs to be monitored closely more frequently, but that’s my opinion.

I think so, but there isn’t any history of thyroid issues in my family as far as I know. There is type 2 diabetes though

I think you have to bear in mind I am probably ancient compared to you! So I am past the child bearing years. If I had a massive downward change in symptoms then I would definitely be looking for six monthly checks. As it is, my symptoms have been stable for years now. Apart from offering levothyroxine at around 50/75mcg daily there isn't much else a GP can do.

Yeah, that’s fair.i did consider that when i read your reply. Don’t say you’re ancient though ❤️

😮poor soul. So I need not feel so upset that I may have mentally damaged my ds.

from my mid 30s I’ve had to just rock up and ask gp for a test, based on symptoms. 100% of the time I’ve been right. And mostly it’s been more than once a year. But due to pregnancies, kids, hormones, stress, eating too much grapefruit, not taking it correctly, menopause and cancer treatments.

The diagnostics (and treatments) probably weren't so good years ago. I don't know of any autoimmune conditions in my ancestry but when I think possibly my mum had something undiagnosed and my grandmother had gnarly hands that might have been rheumatoid arthritis. Sometimes we don't get same things as relatives and sometimes we do & often more! Female chromosomes and hormones put at us much higher risk than males for autoimmune conditions. The XX thing I was told by an immunologist. The western diet and lifestyle thing is very interesting. I read a very interesting study about continental Africans rarely suffering with lupus but developing it if they went to live in industrialised western countries. That's quite telling. Also AI conditions rising in China since it industrialised more.

I developed hypothyroidism during immunotherapy for cancer. As the therapy rewrites your immune system it lends weight to the AI hypothesis. There’s a family connection, other close relatives are also hypo. I believe I was lucky immunotherapy triggered hypo and not anything worse like Addison’s.

I have never heard that and would go as far as saying it's bollocks. I've worked in mental health nursing for 40 years, including working with trauma victims and I've never heard it suggested that psychological trauma leads to auto immune thyroid conditions.

I've got an under active thyroid, as did my mother and my sister as well. I don't know the cause, I suspect there maybe a genetic link but it certainly isn't caused by psychological trauma!!!

@Luckyingame
sorry if I came across harsh there, having thought about it I came across as very rude.

However I stand by believing auto immune conditions are not caused by trauma though obviously stress may be linked to it or trigger it.

im sorry about your childhood trauma and hope you’ve had the necessary therapy for it x

Hypothyroidism can be caused by damage from cancer treatment, not just thyroid cancer, but treatments than damage the thyroid directly through how they work on the cancer.

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?

Well I feel rather silly now. I have no idea what type of hypothyroidism I have, and this is the first I heard it was auto immune related. I don't know if my type is AI or the smaller percentage. I certainly don't know why i have it. I just know I have it and take meds. Dr tells me what to do and I do it. I get bloods done fairly regularly, levels go askew in times of hormonal change or great stress and my dose might change but it's been stable for a few years now. I get various symptoms and can read the signs when it's getting bad. In 15 years since diagnosis I don't think I've ever googled it or done any research. I'm not sure if that makes me really foolish or better off.

DD was diagnosed with both Hypothyroidism and Coeliac Disease when she was 8. The Coeliacs was inherited from her Great-Grandma (thanks a bunch Nanny!)

I developed hypothyroidism after two pregnancies. I was feeling extremely tired, cold, brittle hair and my GP tested for it. She said that pregnancy can trigger it. I’ve been on Levothyroxine ever since and am tested twice a year in case the dose needs to be adjusted ( it has been in the past).

My Mum suffered from an autoimmune disease from her 40’s onwards perhaps there’s also a genetic predisposition. Luckily I haven’t been as badly affected as her though.

@Dontlletmedownbruce I have no idea what type I have either!

Quoting to add that anytime I google other peoples experiences they give their T4 score using the American scale which is apparently totally different to ours-confusing!

Well I have autoimmune hypothyroidism plus a few more autoimmune diseases and they certainly were not caused by any psychological trauma , I’m sorry you had shit parents @Luckyingame and it may have caused your problems but it certainly isn’t true for the majority of people .

I’m collecting autoimmune conditions so it wasn’t a surprise when I got hashimotos
my nan had a deranged thyroid, my mum had part of hers removed (not sure why)