There was an article that I read on thyroid medication if you have subclinical it doesn't matter to take thyroid hormone medication. The article mentioned there are slight cognitive deficits and it mentions thyroid treatment; nevertheless, it won't resolve fully the deficits. I want to know if thyroid impairment dealing with mental and physical health is strongly present with hormone treatment.
What are side effects of stopping thyroid medic... - Thyroid UK
What are side effects of stopping thyroid medication
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I’m afraid I don’t fully understand what you are asking. Most people with subclinical hypothyroidism will go on to develop overt hypothyroidism over time as more of their thyroid is destroyed. As to how long someone can survive if stopping replacement thyroid hormones depends on residual thyroid function. I have no thyroid so 4-6 weeks to metabolise levothyroxine then probable thyroid coma and death. Other people may feel extremely unwell have cognitive and physical dysfunction which can lead to permanent irreversible organ damage, this could be weeks or months. There is then the fact that individual factors influence how the hormone deficiency will manifest itself: you could have 2 people with exactly the same degree of thyroid failure but their symptoms could be very different, one may have severe cognitive dysfunction poor memory loss of vocabulary, but still be able to wash dress etc, whilst the other may be unable to get out of bed but be able to speak coherently. So the answer I think it is different for everyone.
in reply to cjrsquared
I don't know, I guess it's just me not at seeing why these articles mention subclinical hypothyroidism doesn't need to be treated from hundreds of articles and endocrinology journals. I do think unless someone has hypothyroidism themselves regardless of if they're a doctor shouldn't right articles on the subject. It irritates me that these researchers act like they live through hypothyroid struggles.
Are the outcomes that you describe eg coma followed by death something that really happens ? I am struggling to believe that it does. Wouldn’t people be dropping dead all over the place if it were true ? What about the undiagnosed people , if it were true that failure to medicate resulted in death , what’s happening to them ? I have always found that thyroid issues ( which I have myself) are regarded as very much non life threatening for the reasons that they aren’t.
I had to have rai after a TT for cancer 7 years ago and at that time thyrogen injections were not offered in my local nhs trust. I had to stop levothyroxine 6 weeks before, transition onto liothyronine and stop that 2 weeks before the rai. After 10 days I was unable to complete a sentence or follow a conversation. Got lost driving after a week, so stopped doing that. My daughter had to talk me through getting dressed on the day of the rai. So I genuinely believe that I could have been in a coma by 6 weeks, I have never felt so out of control or unaware of my surroundings in my life. It was extremely frightening.
It is very rare for patients to present with a thyroid coma today so many doctors have never seen it, and only know about it hypothetically, therefore they can be dismissive. I do understand that if you have some residual thyroid function you may not spiral into a coma, but the effects on your wellbeing should not be trivialised.
Just to add, after 2 months was back at work full time in a stressful job so no long term problems at that time.
I do hear what you say but when I describe my symptoms eg as you describe brain fog and confusion amongst them I do find people look at me as though to say haven’t you gut anything better to worry about. Many of the symptoms are so commonplace and shared by so many people, with and without Thyroid issues that I struggle to find any appreciation for the ‘suffering’ we claim rightly to be concerned about. If coma / death awaits a non medicated person maybe I’ll try saying that in future !
That's what doctors want patients to think - that they don't need treatment. But I don't believe it. And the "slight cognitive deficits" are not to be brushed aside and ignored. Brain fog is no joke and nor are the other hypothyroid symptoms that pop up very early on in the development of hypothyroidism.
In my case it reduced my ability to hold conversations in social situations, it reduced my ability to be humorous or to understand humour from others. It reduced motivation to achieve things. It reduced my stamina. I can think in a situation in which I have time to prepare what I want to say (like forum posting, for example), but in conversation my mind just goes blank, and I really struggle socially. I am sure that people must find me boring.
I've never had a positive result for TPO antibodies, but I've had a very slightly over the range result for Tg antibodies, just the once. I was told that my thyroid was "borderline underactive" about 30 years ago. I was told I had subclinical hypothyroidism about 10 years ago. I got my first prescription for Levo in 2013. So, from the first reference to my thyroid being "a bit dodgy" to my first prescription was about 23 years because my condition barely progressed. Twenty-three years of having untreated "subclinical hypothyroidism" wasn't fun, and I just kept being offered anti-depressants. If I didn't do well with those or if I rejected them as useless then I was dismissed yet again.
With hindsight and greater knowledge of how the thyroid affects people I have realised that I have almost certainly been hypothyroid to some degree since I was a young child.
Some years ago it was discovered after an MRI (an accidental finding) that my pituitary was squashed in one direction and stretched in another, and evidence suggests I've had this problem since birth or childhood. I suspect that I don't produce adequate levels of TSH for me. My thyroid might even be perfectly healthy for all I know.
If you really want to give up Levo, then I would advise that you test as many nutrient levels as you can and keep them optimal. Also research how to optimise your gut health. Always eat nutrient-dense food, including good levels of protein and fat, and avoid a carb-heavy and sugar-heavy diet. Keep alcohol to a minimum. Try to reduce stress, and get plenty of sleep. Get some regular exercise but don't overdo it. If you can optimise as many other facets of your life as possible you might be able to do well without Levo, at least for a while. It depends on whether or not you have a form of thyroid disease which is progressive, i.e. like Hashi's.
in reply to humanbean
Thank you for your testimony I learned over the years, it's useless to stop levothyroxine. Once the thyroid stops producing hormone, then it's no longer capable of producing more. I spent years trying to get off and I learned it's impossible.
in reply to humanbean
Thank you for your testimony I learned over the years, it's useless to stop levothyroxine. Once the thyroid stops producing hormone, then it's no longer capable of producing more. I spent years trying to get off and I learned it's impossible. I have found the liquid capsule levothyroxine (tirosint) at least helps relieve some symptoms.
You’re never boring Humanbean, I pin back my lugholes whenever I see your name 🥰 mx🌹
That is heartbreaking. Hugs humanbean. X
Rightly or wrongly I have lost faith in the pharmaceutical applications for various justifiable reasons, that is in my considered opinion and for reasons not involving anything to do with hypothyroidism. I am prescribed eltroxin, through this lockdown I became careless with my meds abandoning them to a greater or larger extent including eltroxin. But reading a response here has cautioned me maybe to think again despite the fact that after 2 - 3 months without or with intermittent use of eltroxin I feel no different - really. (Now maybe I am creating problems for the future.) I eat healthy, get an hour of exercise of walking per day now which will increase significantly as lockdown is eased (I pray) and energy levels are good at 60.I still think about T3 and am convinced that it would be better but the fact that I know so little about it and my doctor has not responded to my queries means that it's still out there as an option.
For anyone interested , here are some articles i've collected about the extremes of untreated hypothyroidism from the past:-this one ncbi.nlm.nih.gov/pmc/articl...
'Myxoedematous Madness' is from 1949, and has 8 pages incuding before/ after photos if you click on the pages individually.
Plus some others from more recently:-
patientcareonline.com/view/...
endocrinologyadvisor.com/ho...
cureus.com/articles/5580-my...
dermatologyadvisor.com/home...
hindawi.com/journals/jtr/20...
hindawi.com/journals/crie/2...
scielo.br/scielo.php?script...
journalmc.org/index.php/JMC...
Steni , just to show you , hypothyroid coma etc is a 'thing ' ~ in extreme case if left untreated.
Two links to make one very important point. The quoted paragraph below is my point!
Myxedema Coma: Diagnosis and Treatment
A common misconception is that a patient must be comatose to be diagnosed with myxedema coma. However, myxedema coma is a misnomer because most patients exhibit neither the nonpitting edema known as myxedema nor coma. Instead, the cardinal manifestation of myxedema coma is a deterioration of the patient's mental status.
aafp.org/afp/2000/1201/p248...
DO NOT LOOK AT THIS LINK - unless you are prepared for potentially disturbing photographs
Myxoedema coma: a forgotten presentation of extreme hypothyroidism
casereports.bmj.com/content...
From your first link
"and some patients with compensated hypothyroidism are asymptomatic.""Patients with compensated hypothyroidism often exhibit diastolic hypertension. Decreased oxygen consumption and lowered body temperature result in peripheral vasoconstriction and central shunting. Only when the patient has begun to decompensate do these neurovascular mechanisms fail. The patient may then display the hypotension characteristically associated with myxedema coma. Bradycardia, low cardiac output and overall blood volume deficit frequently exacerbate the hypotension."
This has cleared something up that i think i'd previously misunderstood.
When i had an operation , on my notes i noticed it said
" mild systemic disease , adequately compensated"
Which at the time i had taken 'compensated' to mean 'hypothyroidism compensated for with adequate levothyroxine dose' as i had been on stable dose of Levo for many years at the time.
But i now realise that is perhaps not what was meant by 'compensated'
And from your second link , i was particularly interested to see swollen bridge of the lady's nose , as i have felt and seen a much milder thickening in this area on myself when dose Levo was reduced too far. and wondered if i'd imagined it as most descriptions only refer to the eyes.
The body needs thyroid hormones to function both mentally and physically - and therefore to survive Different tissues require different amounts...the brain for example needs a lot of T3.
If hormone levels are low the body will suffer and as levels drop further the body will start to shut down. In extreme cases it will shut down totally and the patient will die ( you referred to this
A diagnosis of sub clinical hypothyroidism will almost inevitably become hypothyroidism which is why regular testing is important in order to identify any change/decline.
In c1877 physician William Orr did PMs on patients he had failed to cure. They suffered from what we now know to be symptoms of hypothyroidism and they had all died very slowly, over years. He discovered their thyroid had atrophied.....he discovered their thyroid glands had stopped working and he discovered that, after various experiments, ground up animal thyroid tissue relieved them of their symptoms. The rest, as we say, is history,
You ask, "Wouldn’t people be dropping dead all over the place if it were true ? " Those with serious hypothyroidism (myxoedema) died a long slow horrible death. Less serious cases had a miserable life.
"I do think unless someone has hypothyroidism themselves regardless of if they're a doctor shouldn't right articles on the subject" Are you really suggesting that only thyroid patients are knowledgeable enough to research and write about hypothyroidism? To be frank, some are!
"It irritates me that these researchers act like they live through hypothyroid struggles.' If it wasn't for the scientists there would be no progress. Just a pity the medics don't always listen to them!
"What are side effects of stopping thyroid medication?" It depends on the severity of the hypothyroidism but in all cases increasing ill health and in extremis ... death!
It is all shockingly confusing. Thyroid diagnoses and treatments are currently appalling, medics are trained to use numbers ( mainly TSH) and 'tick boxes' rather than good old fashioned clinical evaluation. They do not - or cannot - explain our condition to us and many are ( like me) simply told, " just take this little white pill for the rest of your life and all will be well".
If only..... I became very ill on levothyroxine and after joining this forum discovered that I have a type of thyroid hormone resistance and need 'the last resort' - a daily high dose of T3-only. Yet, in the first 70 years of my life not one medic suggested this as the cause of my declining health... and my hypothyroid symptoms!!
So, yes, if you are facing hypothyroidism you need to be medicated, your life may depend on it!
Take care.
Thank you Dippy Dame.Can I ask you please,
1. How did you conclude that T3 daily dose was what you needed?
2. How did you determine what your daily dose should be and
3 (Asked a million times here already I'm sure) Wher can we source T3?
Regards
Jer
Morning jeresavo
Levo didn't work for me, slowly and variously titrating combo T4/T3, didn't work either......all this over about a year. Decided to try "the last resort", T3-only, titrated that slowly for many months. Once I reached 60 + mcg I was in no doubt that I have a type of thyroid hormone resistance, if not, that dose of T3 would have made me overmedicated (symptoms/ like hyper) and ill.
I increased T3 dose very slowly until hypo symptoms improved. Never 100%, but over decades the damage done by low tissue T3 was unlikely to be totally resolved. I was in my early 70s by then.
Recently I began to feel overmedicated on 200mcg (some T3 receptors possibly had a kick start) Now, aged 75, I take 100mcg and function fairly well - at worst I could barely function.
You could post a request for sources, replies to be by PM. However you haven't posted much detail that indicates you need T3.....sorry, erring on the safe side. T3 is a very potent hormone and must be used with care.
If you have any lab results post them and this will help members understand your problem.
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and antibodies all need to be tested
Many of us do this by private testing
thyroiduk.org/help-and-supp...
Some background info that may help
thyroiduk.org/if-you-are-hy...
Low T3 can be caused by several things among those...
Low nutrients ( above) must first be resolved
Poor conversion of T4 to T3....may be low nutrients or a genetic polymorphism
Thyroid hormone resistance....not so common. May be genetic.
I may be telling you things you already know, if so apologies but if not the above may help Post full test results and with the support of experienced and knowledgeable members your recovery will begin. They saved me when medics failed to do so !
The answer regarding use of T3 is basically, understanding how the hormones work and then starting trial and error. Sadly there is no quick fix ( think headache/ paracetamol!) but with time, patience and determination there is a way forward.
My profile details my thyroid journey.
Good luck and please keep us posted.
Best...
DD
Thanks Dippy. I had coronary issues in 2004 at 43 hrs old. No heart attack just blockages followed by 2 stents. Since then I have studied the subject & come to certain conclusions which are not terribly relevant here. Now it seems the thyroid & hypothyroidism is deserving of the same attention, I find it difficult to get my head around it but your comments are part of my journey here and a step in the right direction. I have suffered headaches since my 20's but never succumbed to medication for various reasons. Brain scans were inconclusive and I was led to believe they were tension related which I accepted. A doctor, also a writer & sceptic who writes on heart disease whom I admire & whose work is solid & fact based touched on hypothyroidism some years ago in one of his blogs where he introduced the notion of T3 & questioned the current treatment methods got me thinking about my own condition. My eltroxin dose has gradually increased up to 1,250 mg pw - but like I said, this whole government applied movement restriction crisis at the moment has knocked me for 6 & i gave up on prescribed meds, tho stuck with my vits. But following a comment on this very thread I have resumed in last few days. Can I confirm any side effects since I opted out some 6 + weeks ago? Had to think about that, maybe feeling colder in bed in the morning, a more consistent but duller headache, (but not getting my usual considerable exercise quota). So I take your point about blood tests - hav blood tests due in April with my GP. Your comment re private testing intrigues me - where I am I pay for my €20 for bl tests with my GP so in theory that's private. Thanks so much for your response and your offer. I use telegram. The subject matter is complicated but exciting and I look forward to getting a better understanding of this fascinating subject. Thanks again
Before I was diagnosed I’d taken to passing out all over the place with little warning. I can well believe you could end up in a coma. Not worth the risk. Stay well. Most of us need more medication and struggle to get it. Not less. Good luck. 🤸🏿♀️🥛
That's a scary thought for anyone, but something we need to bear in mind! I arrived here feeling very unwell, I'm now totally convinced my body had started to shut down as happens in extreme cases. I suspect that happened to my maternal grandmother c1940s
Hope you are ok
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