Cause of hypothyroidism : Hello, I know I might... - Thyroid UK

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Cause of hypothyroidism

Dhalialover profile image
48 Replies

Hello, I know I might be asking an impossible question but I was wondering what your thoughts are on the cause or causes of hypothyroidism?

All the websites including NHS say there is no known cause. I know that is the case with many conditions and I am grateful that I have not been diagnosed with a life threatening condition, but the practical side of me wants to understand why.

I was diagnosed last year after debilitating exhaustion and brain fog. My test results show my vitamin levels are all good, and although I have a history of anaemia I have improved that recently. The diagnosis followed a period of stress so could it have been that? I went through considerably worse stress when I was younger (teens and 20's) so that doesn't make sense or maybe this is showing my age (51 now).

I would be grateful for your thoughts. Thank you 😊

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Dhalialover profile image
Dhalialover
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48 Replies
greygoose profile image
greygoose

It's not that there is no known cause, there are many, many known possible causes, it's just that it's rarely possible to find the cause in any given individual.

It could be due to injury to the pituitary or the thyroid itself, or it could be autoimmune (the immune system attacking the thyroid to destroy it). It could be due to starvation - anorexics often end up hypo. Or a virus, or certain medications, like lithium. It could be due to excessive bleeding during childbirth, or just being pregnant and giving birth. Or chemical polluants/endocrine disruptors in our water, air or food. I don't think stress can be a cause - although it would make things worse - but it's well-known that physical or mental abuse can cause it, which would be stressful. One of this causes might strike a chord with you, but there's no way of proving it was that. We can only surmise. :)

Unless it is autoimmune, of course. In which case antibodies can be tested to show it. But then that raises the question: what cause my autoimmune condition. And from there we go down another rabbit hole full of ifs and buts and maybes. And in the end, does it really matter? Because the treatment is always the same, and there's no way of stopping, curing or reversing it. We just have to accept it and live as best we can. :)

jgelliss profile image
jgelliss in reply togreygoose

Great Response. I ponder many a times how I ended up having with Papilary Cancer and at what point did it actually start? Looking back at times I must have started my thyroid journey way way back in my teens. I guess I just had excuses for my symptoms. And Dr's were and continue being so illiterate as far as Thyroids are concerned. Many of us suffer for that.

Lets hope that new thyroid patients have better experiences than we had.

Tina_Maria profile image
Tina_Maria in reply togreygoose

It can also be genetic predisposition, for example both my paternal and maternal grandmothers had hypothyroidism, my mother has it and I have it too! 😢

Sadly my paternal grandmother didn't get offered any treatment so she ended up as a diabetic, but my mother is well and listens to me when it comes to medication and supplements, and she is doing well and has a good quality of life at 82.

PricelessJoy profile image
PricelessJoy in reply toTina_Maria

Pardon my ignorance but how does one become a diabetic if not on some form of thyroxine?

Tina_Maria profile image
Tina_Maria in reply toPricelessJoy

Low levels of T3 in particular are associated with elevated glucose and cholesterol levels, as the liver has difficulties processing these dietary components.

The elevated glucose levels can lead to insulin resistance and over time glucose control gets progressively worse. Eventually, the body cannot process glucose effectively any longer and the patient can become diabetic. This can not be corrected through dietary changes or exercise alone (it can help), but this disturbance can only be properly addressed, once the patient is on sufficient thyroid hormone therapy. This will increase their T3, which in turn will assist in processing glucose.

I have attached a publication highlighting dysfunction of glucose metabolism in thyroid disease:

pmc.ncbi.nlm.nih.gov/articl...

Hypothyroidism and type 2 diabetes have a complex relationship, with hypothyroidism potentially increasing the risk of developing type 2 diabetes due to factors such as reduced metabolism, insulin resistance, and obesity.

This is why it is important to have your thyroid hormones optimised, especially T3.

DippyDame profile image
DippyDame

The cause is basically low cellular T3, but what causes that could be wide and varied

A fairly common cause can be genetic in that a Dio2 polymorphism impairs T4 to T3 conversion causing low T3

The T3 must reach the nuclei of the cells and attach to the many T3 receptors before it becomes active, it can then fulfil it's function.

Some people, myself included, have a form of hormone resistance which prevents adequate T3 reaching the nuclei, resulting in low cellular T3. Exogenous T3 is then required

paulrobinsonthyroid.com/dio...

In extremis hypothyroidism can be life threatening but unlikely with modern testing and treatments.

Prolonged severe stress can lower T3 levels and it is possible that any damage done by this can in time affect health.

healthline.com/health/hypot...

Hopefully you are now on an adequate dose of replacement thyroid hormone.

TSH110 profile image
TSH110 in reply toDippyDame

I fall in the ‘unlikely’ camp I was lucky not to die of it. I often wonder how many do still die of what is a treatable condition because of medical gaslighting/ignorance/clothears

DippyDame profile image
DippyDame in reply toTSH110

Yes....I fell in the "unlikely" camp too. My body had been slowly starting to shut down. I now need a large dose of T3-only but some of the damage done still remains. I'm aged 79!

Like you I often wonder how many suffer silently and die behind closed doors because medics fail to diagnose the problem. I'm now sure my mother was one of that number.

It is an utter scandal and tantemount to medical neglect!

I didn't want to unduly worry Dhalialover !

TSH110 profile image
TSH110 in reply toDippyDame

Yes I didn’t want to be alarmist and It’s still a tiny percentage of us that is so unlucky but bad news if it’s you!

Jax49 profile image
Jax49 in reply toDippyDame

I had the same experience as you. My GP still doesn’t accept the dx given by the doctor at a thyroid specialist clinic. I actually refused cancer treatment because i’ve felt so unwell (also with breathing problems) for so long. I’ve been on ERFA T3 for 18 months and only recently ‘optimal’. I’m 76.

arTistapple profile image
arTistapple in reply toTSH110

Clothears. Years since I heard that one. Perfect. Conjures up disinterest and ignorance beautifully.

arTistapple profile image
arTistapple in reply toTSH110

I have very recently had to have heart surgery. Don’t know how many times I complained. The cardiac surgeon, very blasé, put my condition down to my hypothyroidism. Really?? - he did not bat an eyelid when he said it! How come other medics further down the line (including endocrinologists) failed to acknowledge and failed to treat? Honestly I don’t know how I have survived. Must be made of stern stuff, as obviously along with many of us.

TSH110 profile image
TSH110 in reply toarTistapple

My ticker is not right now but all I get is it’s because I take NDT yet I had heart issues long before I ever went near NDT or levithyroxine. Half my family croaked of cv disease who had never so much as sniffed endogenous thyroid hormones let alone taken any. I’ve given up for now but it’s getting worse and worse I get breathless and horrible chest jaw and arm pains - so classic - just walking now . I’ll probably drop dead of a heart attack. Not sure they could help but if they refuse to acknowledge there’s a problem and investigate it I’ll never know one way or the other.

Do you ever feel like you’ve been dumped on the medical scrap heap?

Thyroid disorder and non compliant NDT user - the very worst of the worst, fully deserved of medical neglect and premature expiry.

arTistapple profile image
arTistapple in reply toTSH110

Ok. You need to see a cardiologist. ASAP. With my history I shied away from this. No-one believed me. I lost count of how many times I had been politely tapped on the head in A&E. “It’s only palpitations”. No-one was more surprised than me to find that the top guys in cardio thoracic surgery know about hypothyroidism and the heart connection. Absolutely no other medic along this long road, admitted to this connection whatsoever - even my hand picked cardiologist. Whilst I had hand picked this cardiologist her quote “I leave endocrinology to the endocrinologists” was overwhelmingly disappointing; it’s helped get me there all the same. I had gone beyond the help of medication. My dream of T3 sorting it all out has been just that - a dream. Perhaps if my hypothyroidism had been discovered (blood test showing subclinical 24 years ago and ignored) 25 or more years ago, T3 would have dealt with it. Subclinical and untreated is a ‘red flag’ for heart stuff. It’s always been the case but ‘rediscovered’ by modern thyroid research.

Do yourself a favour and push for a cardiology referral. It will take time to sort out all the tests. I have informed my NHS endocrinologist of my ‘new’ situation. He is one of the few who does know about the heart/thyroid connection. He wrote the meta analysis that I found through ThyroidPatientsCanada website. Unfortunately he knew I was beyond help at just the point I finally was ‘allowed’ to consult with him. I was furious but now I understand why he could not help. Surgeon told me in no uncertain terms that “Something has to be done”. He could not recommend drug treatment (of any kind) it just could not be sorted with a drug regime. I am still of the view that when I recover from this, T3 will be helpful.

As I said on another post, after only a few days on T3, my cholesterol dropped from 8.9 to 5.7. That caused a few scratched heads.

P.S. I would agree NDT etc has got bu..er all to do with your situation. It’s medics arrogance/ignorance.

TSH110 profile image
TSH110 in reply toarTistapple

Thanks I really ought to kick up a fuss. It’s not reassuring when you gp said stop taking thyroid medication when you have no functioning thyroid. I said “what? And die!” I told him it had shrivelled away and my endocrinologist said it was non functional after u/s investigation. He dydnt seem in the slightest bit bothered about the highly dangerous avd totally inappropriate instruction he gave me and was completely unaware that I had an endocrinologist or that it took 9 months of hell getting ‘optimised’ I had told him I was be er well on levothyroxine, why does he think I resorted to NDT to give myself heart problems? He behaved as if I was some complete nutter with a perfect thyroid giving NDT a whirl just for kicks. I’m not having him again . I was minded to complain to the head honcho I might still do that - it was unacceptable to tell me to stop. No offer of horrible levothyroxine to replace it either. No guesses for what I’d have told him to do with it but that’s academic.

I used to be very fit and run a lot now a plod leaves me breathless and I get terrible chest pains. I’ve gone really downhill quickly these last two years but there’s been a downward trend for a lot longer which I put dowm to aging but do people get horribly out of breath just jogging because of aging? I imagine they simply slow down but feel ok at a slower pace, not like they are gasping for breath. I started getting afíb warnings on my Apple Watch and the symptoms were exactly like those described on line when I checked, and the pattern of it too. It stops early morning so I’ve gone in for two ecgs after the heart has returned to normal so they showed nothing. They have no mobile ecg units to self monitor. So I’ve been told to come in when it hits usually late pm when they aren’t there in the meantime they will do nothing. The afib has stopped for the while which is good. . Honestly my dog got better diagnostics treatment than this, heart scan, full bloods, no, urine sample 48 hr ecg abdominal scan, biopsies,….all in less than 2 weeks. It cost an arm and a leg tho. The first time I had problems I had an abnormal ecg avd was sent for an exercise intolerance test. I was told a chamber was. Not working properly But not to worry it was just something women of my age got 🤬 and was probably an early sign of thyroid problem

It’s as if they’d like you to go away and simply keele over and die to stop you from bothering them. Sometimes I think that would be a sight better than fighting the medical profession - quick too!

arTistapple profile image
arTistapple in reply toTSH110

I have never had an ecg show anything. 24 hour monitoring showed nothing, echo showed nothing. Original angiograms (2001 & 2002) showed arteries ‘spasming’ but no (apparent) plaque, or at least less than average for age.

I think technology has moved on enormously.

I also can’t believe how I pushed myself - because ‘nothing was wrong’!

The first thing that showed anything was the CT scan about 8 months ago. Apparently showed up to 80% plaque in distinct places. Hardly any plaque elsewhere. In fact the very recent angiogram was much more accurate and showed 94% blocked in those distinct places.

After 25 years plus, I was extremely sceptical. Frankly I was brainwashed; I was disbelieved so often.

I would love you to push for proper investigation. Where are you? UK? Two main heart hospitals in England (covering Scotland and Wales too). Get second opinions from one of them or a referral if you can. I wrote directly to the Professor I wanted. Initially no answer but finally got my GP to refer me to the cardiologist I ‘hand picked’. She had definitely read my direct letter by the time I saw her. The wait was not terribly long. PM me if you want her name. Another hypo patient asking for help might just make her sit up and take notice that this is a huge issue for hypo patients - especially women. She is pro women and to me seemed unaware of this issue. Still, she pushed for me to get all the other appropriate investigations!

andyjs2 profile image
andyjs2 in reply toDippyDame

DippyDame, how did you determine you had T3 hormone resistance?

DippyDame profile image
DippyDame in reply toandyjs2

After a lot of trial and error....it's explained in my bio.

Dhalialover profile image
Dhalialover

Thank you this is so interesting and has given me some possible clues. I really appreciate the responses. Much better information here than anywhere else. Thank you.

I agree with what others have said. I have Hashimotos, diagnosed 25 years ago, and in the past I have tried to come off medication but always ended up worse off. Some claim that you can reverse Hashimotos by lowering antibodies. I never found that to be true.

I will never know for sure what caused it, but I had mononucleosis five years before I was diagnosed, and that is one known cause of autoimmune hypothyroidism.

Jazzw profile image
Jazzw in reply to

Yes—I was reading more about this the other day. Epstein Barr seems to be implicated in a lot of autoimmune diseases.

jgelliss profile image
jgelliss in reply toJazzw

Yes my son had Mano. And needed to get on to thyroid meds. The Dr was very astute and made the connections. 🙏

GussyG profile image
GussyG

I believe in my case too much stress was the cause and at a time in my life where I’m not as resilient as I once was (i’m approaching menopause). I had two very clear high stress events on a nice backdrop underlying ongoing financial and family stress. I could see my numbers creeping up over a few years but then my thyroid pretty much said nope. You’re done! So it’s been cumulative and I don’t have Hashimotos.

Lolota profile image
Lolota in reply toGussyG

Yes, in my case it's stress as well. A very horrible and abusive life in France. It's hell on earth for me.

Fizzyinch profile image
Fizzyinch

as others have said there are many causes. I highly recommend reading the book ‘Root Cause’ by Izabella Wentz. It’s an introduction to all of the different types of causes for autoimmune hypothyroidism (hashimotos) and solutions to resolve them. For many of us I’m sure there is a concoction.

Dhalialover profile image
Dhalialover in reply toFizzyinch

Thank you. I had wondered about trying that book and also Thyroid Healing by Anthony William. After years of being told all my symptoms were in my head, in the last few years I have been diagnosed with 3 different conditions. Maybe healing one will help the others. Worth a go.

Tina_Maria profile image
Tina_Maria in reply toDhalialover

For some reason, GPs rather diagnose other conditions such as anxiety or stress or chronic fatigue instead of getting to the actual root cause, which very often is thyroid disease.

On of my pet hate diagnosis is Fibromyalgia - in my view utter balooney as it is totally non-specific and can be applied to almost any symptoms, so a very lazy throw of the dice to get the patient out of the surgery! 🙄😡

Dhalialover profile image
Dhalialover in reply toTina_Maria

I agree. My brother is unable to work due to fibromyalgia. I assumed a diagnosis would be the start of an improvement in his health due to treatment and support, but he was just given antidepressants and told to get on with it. I therefore wonder if the diagnosis really means "we don't have a clue".

Tina_Maria profile image
Tina_Maria in reply toDhalialover

Indeed, probably means no clue or perhaps even don't care sadly.

Fizzwhizz profile image
Fizzwhizz

I was told a genetic predisposition but I think stress and pregnancy/menopause hormonal changes played a part too. I believe statistically women suffer more autoimmune disorders than men do and wonder if that’s due to more hormonal fluctuations at various life stages.

Ukie profile image
Ukie in reply toFizzwhizz

I think it can definitely be linked to hormonal changes. My sister and my daughter started showing symptoms after puberty, and I started during the menopause.

Italiangirl123 profile image
Italiangirl123

A friend who is undergoing immunotherapy for the treatment of melanoma has become hypothyroid. She was told that it was a side effect of the treatment.

Oatsforlife profile image
Oatsforlife

It’s a good question - complicated condition. I think mine is genetic - my mum found out she had hypothyroidism at the age I am now but I don’t think she knew if it was Hashimoto’s.

It seems too much of a coincidence that women are so affected so menopause has to be linked. I think mine crept up on me and was dismissed as menopause or mental health. During my journey, I had food intolerance testing & gluten/dairy were highlighted as an issue too. But I also went through losing 3 close family members in a short timescale & think that was the final trigger?

As everyone says, it’s hard to pin it down & I’ve seen a helpful diagram that shows several factors, interlinked to increase the risk.

How did you get on top of your anaemia? I find it hard to avoid side effects and things can be so expensive!

Take care everyone 🌹

Dhalialover profile image
Dhalialover in reply toOatsforlife

I got my anaemia up from 21 to 52 by taking Feroglobin capsules 3 times a week (everyday hurts my tummy), Spatone sachets 3 times a week and a gluten free spaghetti bolognese once a week (previously rarely ate red meat). It has worked but I have now reduced the amounts (cost, practicality and stomach comfort) so I hope it doesn't fall too much. Thank you for your reply.

TSH110 profile image
TSH110

being female with complex hormonal changes through life, a family history of thyroid disorder resulting in a bad genetic draw, pollution from chemicals, car fumes etc, stress, abuse as a child, a collectively ignorant medical profession….are a few of my musings on it

Stace268 profile image
Stace268

I wondered if mine was due to Estrogen dominance or lack of, I have high testosterone and low progesterone. I believe similar problems run in my family and also high cholesterol.

BigBlueBear55 profile image
BigBlueBear55

I think it can't be just one thing that triggers it and is a multi factor of different things. The same with MS really. I do believe hormones play a part though and the fact that women seem to be more likely to get it must be for some reason.

humanbean profile image
humanbean

There is definitely a genetic component in my own family. I'm hypothyroid, so is my younger sister, my late mother and her sister, and, although I don't know for sure, I suspect my maternal grandmother was hypothyroid too.

One of the problems that runs through my family over decades is severely low levels of iron, and anaemia. I am left to wonder which came first - low iron or hypothyroidism. I have two male cousins who have or had iron deficiency anaemia and that is quite unusual in men. I don't know if they are or were hypothyroid too but it wouldn't surprise me if they were.

jgelliss profile image
jgelliss in reply tohumanbean

Wow!!! Your history sounds so very similar to mine. Most cousins and Aunts were on thyroid meds. I only found out after my thyroid issues that I have a family history with thyroid problems. Go Figure.

HowNowWhatNow profile image
HowNowWhatNow

Big, good question.

I have a theory - which many here will differ on! - that the anaemia-hypothyroidism connection has not been effectively ruled out. I speak as someone who lost nearly two litres of blood in pregnancy and then went on to develop hypothyroidism only a few months later, I know a few other women who developed it post natally for whom the same is true, and have read a lot of cases here from people like you who were already anaemic and then went on to develop a thyroid issue.

Of course there are other causes and many other susceptibilities, roots, causes, genetic probabilities / groupings etc..

I have no skin in the game and no academic interest in seeing an anaemia connection proved. More widely it’s obvious that anaemia is massively under treated and underestimated as a cause of health problems in adolescent and in adult women. It’s of course a major health problem for women in the developing world too. Treating it properly or even better, preventing it, will - when health systems go for it in a major way - have huge benefits for family systems, not just the individual women.

That’s my tuppence ha’penny!

humanbean profile image
humanbean in reply toHowNowWhatNow

I speak as someone who lost nearly two litres of blood in pregnancy and then went on to develop hypothyroidism only a few months later,

Perhaps you developed Sheehan's Syndrome.

en.wikipedia.org/wiki/Sheeh...

dealsgap profile image
dealsgap

After listening to hundreds of hours of docu-series and webinars from all differenty types of doctors/non-doctors the thing I see over and over is some sort of trama . When you said, 'I went through considerably worse stress when I was younger (teens and 20's)' I immediately thought of myself as I was abused by a narrsasistic Father for 18 years which blew out my adrenals (hypoadrenia). This in turn impacted my thyroid eventually as a body with no/low cortisol turns to adrenaline and you can't run on adrenaline constantly.

Fizzwhizz profile image
Fizzwhizz in reply todealsgap

Yes, I read something saying trauma sets us up for autoimmune diseases. It places ongoing stress on the system. I think the book The Body Keeps the score discusses some of this.

jgelliss profile image
jgelliss in reply todealsgap

I'm so so sorry what you were put through. I hope you healed from your trauma. Sending you Big Hugs.

silverbelle51 profile image
silverbelle51

Personally I think you are asking a question more people should be asking . As someone who was misdiagnosed due to an elevated TSH I wish I had not trusted . I was thrown into Hyper thyroid sx which my doctor IGNORED and I live with for 4 3/4 years . Vitamin and mineral deficiencies, food preservatives + pesticides cause hormonal dysfunction and Soy is in most every food and is a hormonal disruptor and goes by many names! I am not all that sure we can depend on lab results either . I keep a log of foods I eat and supplements I take and also changes in my symptoms/ status . In my log I have a list of side effects of supplements I use so I can track changes. Too many practitioners operate from protocol manuals to keep their employment and distance themselves from actual integration of your symptoms and possible causes. Sadly for us all diagnosis is a lost art. There are some really fine practitioners out there, but they are few and far between. Thank you for your inquiry. This is a very good site and we all need one another . Be Well !

yo56 profile image
yo56 in reply tosilverbelle51

👆

cyberbarn profile image
cyberbarn

" I do believe hormones play a part though and the fact that women seem to be more likely to get it must be for some reason."

Women are more likely to get any autoimmune condition, a rule of thumb is that about 80% of people with autoimmune conditions are women. Women have very different immune systems and this is down to genetics. One of the reasons why we have to have different immune systems to men is that we often have to have a foreign body inside us for months at a time - babies!

If we didn't have a different type of immune system then our body would reject the foetus when we were pregnant. Something about these differences means that women get more autoimmune conditions than men.

Additionally, the immune system is very different from person to person. It is the most diverse system in humans. Hence one person can be healthy, the next be poorly, and yet both can have the same lifestyle.

I am getting fed up with elderly men saying they are healthy because they eat well, don't smoke and exercise, so why can't everyone else be like them, it's easy! I swear, next time someone says that to me I will ask them if they have ever had baby and if not why not, having a baby is easy!

Lottyplum profile image
Lottyplum

Mine kicked off with my first pregnancy but of course drs didn't have a clue!!

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