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.

Most of the women in my family have hypothyroidism. I have it too, but I haven’t suffered from any kind of trauma - my mental health is pretty robust. I take a dose of levothyroxine every morning, wait 30 minutes before drinking my cup of tea, and don’t really think about it beyond that. Since starting medication I haven’t had any symptoms.

Sorry you had such a shit run 💐
How did you get on with Levo? I’m on it but it makes me feel out of sorts, I feel better without it but there are complications I think if you need it and don’t take it.

Interesting. I’d like to know more about the trauma side if anyone’s got any sources?

I was randomly diagnosed with hypothyroidism AND post menopause at the same appointment after a barrage of blood tests, with a new GP. I was 48. No real symptoms, just a standard baseline blood test. Onto thyroxine.

In 2022 I found a lump - straight into the 2 week protocol for UC and needle biopsy (yuk), swiftly followed by an op. On the table they decided to just take the half with the lump as there are consequences to removing all.

Then all the follow up letters got mangled - one said ‘nothing wrong, no lump’, another said, ‘poss cancer’ and then nothing. When I went back for the follow up camera up the nose (double yuk) the consultant said, in passing, ‘you must be relieved it’s not cancer’. 😵‍💫 Told him I’d not been told that, no. So what was it? Hashimoto’s Thyroiditis.

For some reason, my GP will not confirm I’ve got Hashimoto’s. Did call in a panic after a post op blood test ‘you must double your thyroxine, now!’

So I’m on 200mg and still feel shite.

coincidentally, I’ve just got hold of most of my test results and have a GP phone appointment next week.

Sorry for the essay! I’ve been wondering if it helps to know for sure if I’ve got hashi’s? Is there any other treatment other than levo?

Mine appears to have been caused by pituitary damage caused ultimately by the Epstein Barr Virus. So secondary hypothyroidism, which may explain why I had symptoms for 40 years, before I was finally treated.

Levo?
Shit.
Nervous, panicky, sweaty, shaky, thin hair...
Nothing like that anymore. If the TSH is slightly elevated, so be it.
Oh, forgot these thundering palpitations. 🙄

I always assumed it was genetics. Me, my mum and brother all have under active thyroids. Mine was diagnosed after pregnancy but I think it was there before.

@Luckyingame Yep. I bet you forgot shit sleep as well.
I accidentally miss mine. All the time, just to try and get a break.

There may be something in it, as a PP said when you see the endocrinologist they don't tell you why you have high levels of antibodies attacking the thyroid gland and trying to destroy it. There has to be an underlying cause. What triggers it?

Sorry just thinking aloud here...

The odds are that the endocrinologist doesn't know a specific reason.

There are risk factors, such as gender - women are 4 times more likely than men to have an autoimmune illness - and genetics. Having a close relative with an autoimmune illness makes you much more likely to develop one. Pregnancy, birth and menopause are phases of life that increase the odds. Exposure to toxins can bring them on.

There is a lot of theorising that the factors above can re-trigger dormant viruses, such as Epstein-Barr (glandular fever) and cause the immune system to go awry in some people. Much the same way the varicella virus reactivated can cause shingles. I believe mine was brought on by a bout of Lyme Disease. No psychological trauma other than the fact that Lyme Disease is a misery.

@PlatinumBrunette Yes, there are other treatments. NDT (naturally desiccated thyroid), which is made from pig thyroids, and liothyronine (lab created T3), which you take in conjunction with levo. Armour Thyroid and Erfa Thyroid are NDTs from the US and Canada, respectively. I believe there are some other European brands. They are very difficult to get prescribed in the UK, however, unless you have a very clued-up and sympathetic doctor.

No doctor has ever told me the cause of my hypothyroidism, don't think they ever checked for antibodies. But I don't suppose it matters, so long as the medicine works. But I already had one auto immune disease (coeliac) so that increased my risk.

I was diagnosed in the 1980s and have been on levathyroxine ever since. More recently I have been diagnosed with advanced liver cyrosis due to AI so there is obviously a connection.

I was always under the impression hypothyroidism is AI. The exceptions are physical; damage during parathyroid surgery and cancer (though it can sometimes grow to accommodate this - but may need monitoring) and removal due to graves (which is autoimmune). Post partum is temporary. Iodine deficiency is another but rare these days due to iodine in dairy and other sources. (We don’t iodise salt in Uk; vegans need to be aware.)

Ive had it for 30 years but in hindsight had fluctuations when first diagnosed. Partly though coming on and off the pill which can affect thyroxine need, but I also remember terrible sweating phases at uni and have wondered if I was swinging to hyper. Gp once commented I had had antibodies when tested.

they don’t bother testing antibodies as it’s assumed they’re there and it doesn’t help anything. There’s some evidence that graves antibodies can be lowered via supplements iirc but I don’t know if they test anti bodies much there

the progression of the autoimmune disease might rarely stop but the damage can’t be reversed.

Yes, you need a full thyroid panel. You may not be able to convert T4 into T3 efficiently. It’s not uncommon, but the NHS is horrendous for diagnosing it. I didn’t feel fully well until I started taking liothyronine as well as levothyroxine.

Levothyroxine is T4. T4 is a storage hormone that the body has to convert into T3, which is the active hormone used by cells. Taking levothyroxine can make TSH levels look normal, but in some people the conversion from T4 to T3 isn’t sufficient for their tissues, so symptoms can persist. Liothyronine is T3, which provides the active hormone directly.

I was diagnosed with Hashimoto’s and PCOS aged 35 last year. I think prolonged stress caused it. Though when I turned 30, my periods changed and became very heavy. My dad was diagnosed with cancer and died a year later, plus it was COVID and I was doing very intense studying. I’m currently trying to conceive with little success. The endo hasn’t prescribed Levo (yet) but I’m now in the process of having another blood test and might ask to go on it. Anyone know if you can take levothyroxine whilst trying to conceive?

there’s a trial starting looking at a drug they usually use for rheumatoid arthritis.

I think there will be more research and testing of other things in the future

you absolutely have to

https://www.btf-thyroid.org/listing/category/thyroid-disorders-pregnancy

https://www.btf-thyroid.org/pregnancy

Or certainly be closely monitored if fluctuating. I’d join the btf and give them a ring if the links don’t answer your questions

Thank you. It’s just the endocrinologist said it wasn’t at a stage that required levothyroxine. Because as I understand it, there are stages before it develops into hypothyroidism? That doesn’t seem right to me though and I think I need it…

For everyone with hypothyroidism, as with type one diabetes, as with all autoimmune diseases, there’s a genetic predisposition first.

That gene may be “turned on” randomly via a range of factors, stress can be one. In women hormones are a cause. Menopause is common. For MS they’ve found low vit d levels can be a trigger.

what I’ve found really interesting is that they’re treating rheumatoid arthritis with vagus nerve stimulation (implants).

I have hashimotos and I think shift work and having small children triggered it just before I turned 40. I didn’t sleep much for years and was just constantly pushing through. It took ages to be diagnosed properly.
It’s mostly managed now, always tired still from shift work, hashimotos and now peri.

you could ask to be referred to a consultant Obstetrician - a friend found she got a different answer.

Tsh needs to be below 2.5, preferably 1 for conception, these are the nice guidelines. I would definitely join and give the btf a call - they can also contact the endos linked to them who are v good. It might be more complicated in your situation

just remembered that being on lithium and congenital hypothyroidism are other causes of hypothyroidism

thanks for the advice. I’ll give them a call. Didn’t know that about tsh levels and nice guidelines.

Yes, I was on it with all six of my pregnancies. I only have four living children. Good luck on your journey. I am sure you will succeed with the correct dose of levothyroxine. It just takes time.

I was originally on 75mcg daily but now been on 50mcg daily for many years. A geriatric dose, but keeps my levels within a "normal" range. I only know this as I have an annual health MOT check each year.

That’s good. I’d recommend getting your levels checked even more regularly than that even? I recently had my bloods done, and I’m due an ultrasound to check my ovaries on Monday and then meeting with my private endocrinologist on Friday to discuss results. I’ve gone private with Bupa and they’ve been a million times better than the NHS. In fact, the NHS never picked up my Hashimoto’s or PCOS!!!