She had been treated for Grave's disease by carbimazole for six years. Almost four months before the suicide attempt, she received radioiodine therapy. Because of a misunderstanding, carbimazole was not switched by the patient for levothyroxine but had been continued until one week before admission.
Later it says:
Here, the patient had seen her general practitioner twice the week before her admission.
So this poor person had their thyroid treated with radio-active iodine, continued to take carbimazole for four months, even saw her doctor. Yet no-one seemed to notice her severe hypothyroidism! OK, so there were other issues going on, but the case history should have been like a flashing motorway sign saying "Hypothyroidism ahead!"
We have seen so many patients on this forum who have pitched from hyperthyroidism to hypothyroidism - whether due to an antithyroid medicine like carbimazole, radio-active iodine or surgery. And the reaction of the medics has so many times appeared to be surprise.
Case Rep Psychiatry. 2019 Jan 9;2019:4972760. doi: 10.1155/2019/4972760. eCollection 2019.
A Case of Violent Suicide Attempt in a Context of Myxedema Psychosis following Radioiodine Treatment in a Patient with Graves' Disease.
Todorov L1, Ait Boudaoud A2,3, Pascal de Raykeer R1, Radu A2, Lahlou-Laforêt K1, Limosin F1,3,4, Lemogne C1,3,4, Czernichow S2,3.
Author information
1 AP-HP, Hôpitaux Universitaires Paris Ouest, Service de Psychiatrie de l'Adulte et du Sujet Âgé, Paris, France.
2 AP-HP, Hôpitaux Universitaires Paris Ouest, Service de Nutrition, UF Endocrinologie-Diabétologie, Paris, France.
3 Université Paris Descartes, Sorbonne Paris Cité, Faculté de Médecine, Paris, France.
4 Inserm, U894, Centre Psychiatrie et Neurosciences, Paris, France.
Abstract
Introduction:
Hypothyroidism has been associated with mood disorders but some cases of acute psychosis have also been reported. However, less attention has been paid to suicidal behavior in these patients.
Case Report:
We report a case of suicide attempt by self-stabbing in a 43-year-old woman without past psychiatric history, four months after radioiodine therapy for Graves' disease. On clinical examination remarkable signs of myxedema were found and blood investigations showed hypothyroidism with an extremely high thyroid stimulating hormone (TSH) level (152 mUI/L; reference range 0.20-5.10). The patient presented delirium symptoms at the time of self-stabbing, which was associated with persecutory delusions and auditory harm command hallucinations. A rapid physical and psychiatric improvement was observed after the initiation of an oral thyroid replacement therapy without relapse after early discontinuation of the antipsychotic treatment.
Discussion:
The most distinctive feature of our case is that the violent suicide attempt could be attributed to the myxedema psychosis. Suicide may result from several factors, including psychosocial stressors, psychiatric symptoms, and hormonal disturbance. This unique presentation should remind clinicians to systematically consider ordering additional tests in patients with atypical psychiatric presentation, even when serious behavioral disorders (such as violent suicide attempts) are present and may result in premature transfer to psychiatric units.
What a dreadful case! Medics are never willing to admit negligence... and sadly they nearly always get away with it. when they don't they apologise profusely, stating they will learn from their mistakes but they never do!
I'd want to see much more detail before commenting. I've worked with people in the past, presenting with the same sort of psychiatric disturbances, and indeed was held in their respective flats by two of them, on separate occasions, one of whom was on licensed released having followed his own auditory harm command hallucinations to kill a policeman walking by. And even when initiating sectioning proceedings at various times, I can't recall anyone raising the issue of hypothyroidism as the first thing coming to either of the two practitioners' mind. We don't know what physical evidence, if any, of her myxoedemic state, had developed in the four months - whilst I wasn't in myxoedema trauma at the time of my diagnosis, I was however told I was so ill that I had one foot in the grave - yet looked and felt perfectly well. So I don't think there's sufficient facts available to us, to apportion blame in this case.
I was going to say something kind of similar, but I think the advice should be less "When seeing atypical psychiatric symptoms be more alert...", and more, "When a patient is having powerful anti thyroid treatments be more alert..."
During my thyroidectomy and RAI treatment, I and almost everyone I saw looked absolutely wretched, hanging off their bones and moving in slow motion. I think it's pretty unlikely there weren't visual clues that her body was slowed to a standstill. Four months of it, as well, it's just such a long time to be so extremely hypo.
I think part of the explanation will be that doctors consider thyroid illness to be rather trivial, and they forget that with surgical and other interventions it is really turbo charged!
Well that makes my point - you say that about your experience, but a friend of mine had a total thyroidectomy and RAI and continued to look as beautiful, healthy, fit and bubbly then, as she always has. And it reads that the Dr wasn't aware that the woman had taken it upon herself for whatever reason, to continue taking the carbimazole for four months after completion of her treatment, so he wasn't expecting her to be 'having a powerful anti-thyroid treatment'.
Nonetheless, we would expect thyroid tests to be performed in the months after RAI. And, if she was prescribed levothyroxine, how would they establish the required dose?
I agree there is insufficient information to be sure of what happened.
It may depend whether a person has a thyrogen injection prior to their RAI, or whether they've had to come off thyroid replacement for a couple of weeks to drop the thyroid hormone in their body close to zero. Although just as in the story doctors do always act surprised that people are weak on no thyroid hormone, so maybe some people can appear more normal in that state.
I got the impression the woman never had her prescription changed, rather than made her own decision to stay on carbimazole. The summary does use passive language that implies it just happened by magic, but when she was seeing the GP twice they must have had access to her prescription information, and recent hospital treatments.
It appears that this did not take place in the UK so I don't think we can presume what the GP may or may not have had automatic access to, by way of data sharing by the hospital; but I have just discovered for instance, that an important letter from the CCG to my hospital Consultant in December about my treatment, has never been shared with my GP, and the GP was unaware it had been sent. I agree that the passive language of "Because of a misunderstanding, carbimazole was not switched by the patient for levothyroxine" means it can possibly read both ways; but it reinforces the importance of retaining responsibility for our own health and understanding about our treatment, and for asking questions until we are sure we understand.
responsibility for our own health and understanding about our treatment, and for asking questions until we are sure we understand.
This is, I suggest, utterly impossible in the case of someone suffering from severe hypothyroidism especially when it is affecting the mind and brain profoundly. (Similarly difficult in numerous other circumstances but the focus is on thyroid.)
I did not reference my comment to this person or case, I said quite clearly and in a general sense, that it reinforces the importance of retaining responsibility for our health. We are all aware of the all too frequent scenario of people not even asking what tests are being carried out, or what the results were, when they are perfectly compos mentis and able to do so. I neither inferred not stated that someone in a myxodoema crisis could do so. I suppose I could have said "and this case also reminds me how important it is to ask questions or have someone speak on our behalf if we can't do so ourselves" if that makes my intent more clear. However, there is NO evidence from what we can read here, that at the point of completing her hyperthyroid treatment, and due to stop antithyroid meds and begin taking thyroid hormones, that she wasn't anything other than of sound mind, and presumably no reason to believe she wouldn't be. She presumably was rational and focused on that day when someone supposedly or allegedly instructed her to stop taking one med and start taking another. It is reasonable to infer that the mania developed incrementally at whatever rate over those 4 weeks, and that it wasn't present on the day she was medically declared hypothyroid. If this case evidences the possibility that someone can instantly experience a psychotic state immediately following such treatment, I would assume that it would be commented on, but in the 'discussion' aspect of the abstract you posted, the converse is stated viz that if someone presents with atypically psychiatrical symptoms, a thyroid cause should be considered. No reference is made that patients undergoing the radioactive treatment should be routinely assessed for psychiatric disturbance, and as I say, no reference in the above, that this woman was disturbed at the point immediately following her own.
I have been following this thread with great interest, being someone who suffered awful mental illness due to thyroid hormone issues. Until now, I've refrained from commenting.
I find this comment of yours very upsetting:
"We are all aware of the all too frequent scenario of people not even asking what tests are being carried out, or what the results were, when they are perfectly compos mentis and able to do so."
A few years back, I was for a while under the - so called - care of a private endo at a BMI hospital who ordered blood tests. When I asked the nurse there for the details of tests ordered and the results, she categorically stated that I couldn't have this information as it was only for the doctor to know, and anyway, I wouldn't understand it. She had no idea who I was, and presumably made the assumption that because I was a patient I couldn't possibly be an intelligent human being.
This sort of thing happened regularly at my GP surgery too. Receptionists assuming patients were far too stupid to understand such things. It has only very recently been acknowledged (GDPR etc) that we patients have a right to this info, regardless of whether or not we understand it.
In fact our data rights have been protected in some guise or another for some not inconsiderable time, and we can track the regulations back to at least the Data Protection Act of 1984 and the Access to Personal Files Act of 1987; and possibly preceding that, so not so "very recently".
I don't understand why you would find the comment you have quoted, as in any way upsetting. It refers explicitly and only to patients asking for information, when they are able to do so; and makes no reference nor inference, to other than that.
Yes I perhaps should have clarified. My point was that your comment seemed to be inferring that we patients are to blame (at least partly) for not asking questions about tests, results etc. But the fact is, even when we do realise that we should participate in our own health care, and pluck up courage to try to do this, we are treated as if we are inferior beings who have no right to such information, and even less right to question the words or actions of the medical professional. It's the parent/child relationship that many are brought up with of do as I say and don't question it because parent knows best. So is it any wonder patients don't think to ask or are too afraid to do so.
Or too ill. I had told doctor after doctor that there was a family history of thyroid disorder and could all the problems I was experiencing be thyroid related. I was repeatedly told it was irrelevant and nothing to do with my menopausal symptoms. Only one thyroid function test was done which I was told was normal - I now wonder how it could possibly have been normal but my medical notes were lost so I will never know. I believed I was just a hypochondriac imagining all these problems that were a normal part of a woman’s rotten lot in life. But I got worse and worse even deteriorating long after my menopause had ended. I had to demand a thyroid function test in the end even then I was offered antidepressants initially 🙄 Had it been left much longer I do not think I’d be here today. I was in a shocking state by this juncture but must have still looked ok. It took me a very long time to be able to start to be able comprehend the illness/tests etc although I did get the role of TSH in regulating hormone levels as my life saver doc explained it clearly. Even now I am still learning about hypothyroidism. It is my experience that the majority of doctors I saw, a not insignificant number, had very poor knowledge of the disorder and lacked the ability to diagnose it even when compelling evidence was under their very nose, all bar the two GPS who ran a thyroid function test. I feel it is the medical profession who need to pull up their socks, not patients who are too sick to function after having repeatedly sought medical help and have found effective and appropriate care severely wanting. It is a pattern of inadequacy revealed on this forum again and again
Some people with hypothyroidism are in denial about the illness and as a consequence do not want to know about any details. I assume this is an unusual symptom of the illness rather than a capable person willfully not having regard for their health or wanting to self educate about their health. People vary greatly in how they handle illness. Interestingly the cancer deniers have much better survival rates than those that accept they have the disease and find themselves unable to mentally battle against it. It may have quite important survival merit just getting on with things and refusing to contemplate the unpalatable truth about the state of ones health. I do not fall into this camp but several of my relatives certainly have.
Quite -at that serious level of hypothyroidism just doing one thing after another is an all consuming challenge if you can do anything at all - the hallucinations I had were terrifying and my sanity was not intact, making logical, normal thought virtually impossible. I thought people were following me all the time I even believed they were using disguises and changing clothes to fool me when in fact they were just jo nobodies going about their daily business with no interest in me whatsoever. You need a doctor to tell you straight what tablets you must take - even then there is much room for error in that sort of condition.
My experience with taking control of my health care is that the doctors get all egotistical ... the last one said "I'm done with you". The doctor I have now is a family doctor and he is listening and helping me get the prescription I told him I needed. Now taking 1 grain of NP Thyroid. Probably need to go higher still.
That sounds like patient blaming to me! Some people simply do not have the capability to keep an eye on their own health the way a large number of people on this forum do. Most people still trust their and don’t question their treatment.
The responsibility is firmly on the doctor to monitor patients who have had RAI. If they were doing this the severe hypothyroidism and the mistake with the medication would have been picked up before the patient got to a place where they started stabbing themselves.
I have to monitor my own health and research and self diagnose. I am thankfully capable of doing this. If I just followed the doctors lead I dread to think where I would be now. That is not OK. We should be able to trust in our doctors that they will listen to our concerns, and act and treat accordingly and with accurate and up to date expert knowledge but that does not seem to be the case the majority of the time.
Umm I wasn’t listening I was reading and sometimes opinions in writing don’t always come across as intended. Emails being a good example of this. No need to be offended and make rude comments. The assumption that any confusion couldn’t possibly be due to your part of the communication is quite interesting!!
I have just reread your post however and have come to the same conclusions. It reads like you are saying that the patient should have taken “responsibility for [her] health” and should have asked various questions etc etc. You have clarified that you did not mean this but that is certainly how your post reads. And along with your other posts, your overall message seems to be: “we don’t know enough to blame the doctor and the patient should have asked more questions”.
Perhaps you could clarify your position further as having reread your posts I can’t discern another possible meaning?
If you weren't listening, then why did you write "It sounds like ....." There's no confused inference in my being accused of patient blaming, and yes, it's both offensive and rude to be labelled with that accusation, not to mention erroneous.
If she had her thyroid ablated, then she needed thyroid hormones to maintain a level. Just plain negligent that she was still taking medication to lower her thyroid levels! No excuse for that. Maybe it didn't cause the suicide attempt, but I know I had my thyroid out and I have had many crying spells for no reason, more than I have ever cried in my whole life...I am not a crier. Low thyroid replacement definitely messes up your emotions.
This doesn't surprise me at all as when I had RAI for graves desease I was told by my endo to come back in six months time for blood test, in the mean time I became very ill was feeling dizzy, face was puffy, became very depressed was having panic attacks I went to the GP many times and was given antidepressants, water tablets at no time was it mentioned to have my thyroid levels checked, I went on to have a cycotic breakdown, I was put in mental ward and it was there they realised that it was due to my thyroid, TSH of over a hundred and was taken to hospital where I was put on levo and had someone sit by my bed 24/7 for the next week as they were worried I would hurt myself or someone else, it took me two years to recover from this nobody ever apologized just had letter from endo saying she had never seen anybody become so hypo so quickly after RAI.
Gosh what a terrible traumatic experience. What is v hard for the victims of mistakes or negligence is there is almost never an apology which would also be an opportunity for professionals to learn and take precautions to avoid this sort of tragedy reoccurring.
Did you ever think about writing to the specialists concerned about your experience?
The trouble with an apology is that it is an admission of error and then a possibility of being sued. While I do get frustrated with many doctors, I am aware that I will never get an apology and, as much as I don't want to, I do understand why and don't expect it. What you do get when they realize they are wrong is absolute silence - and these are the good ones who are open enough to realize their mistake.
My Endo apologised when my ultrasound appointment was all messed up by an understudy and he did it as soon as he could. So some do admit mistakes have been made. In this case it did not prove to be significant but my unnecessarily extended worry that I might have cancer was not what I needed at that juncture. It was nowhere near as serious as what happened to Raventhorpe, but it might have been a different story had the scan found different.
Hospital doctors How often do they misdiagnose? How often do they misprescribe? Depends what you call a doctor? After 8 pm to
8am week days and weekends you get junior doctors... fresh out of university with little or no practical experience , they misdiagnose most of the time and there is no consultant on hand to check whats going on...they can call the consultant on the phone..but often he is not contactable ...as a number
In my experience, when things go wrong, the sufferer wants an apology and reassurances that the error will not be repeated. Most sufferers don't want a financial penalty. The NHS is trying very slowly (and really not very successfully) to adopt an environment where mistakes can be acknowledged and learned from.
Nevertheless, the doctors code of practice is very clear about apologies.
In Good Medical Practice at paragraph 55 the General Medical Council say:
You must be open and honest with patients if things go wrong. If a patient under your care has suffered harm or distress, you should:
>put matters right (if that is possible)
>offer an apology
>explain fully and promptly what has happened and the likely short-term and long-term effects
I think that if doctors were familiar with this important guidance and implemented it, patients would be unlikely to take the time and expense of pursuing formal action to rectify a poor situation. But the reality is that doctors often don't apologise and often blame the patient. This frustrates the patient and sours the patient/doctor relationship.
Tiny changes in doses or brand of levo makes me feel suicidal for a few days. Not enough that I would act on it, but then it's tiny hormone changes. Not sure I'd have got through what you did. Has it all settled now?
This happened 9yrs ago so now I am fully recovered it took me along time to come off all the medication they had put me on antidepressants, anti cycotic drugs, and tranquilliser, but this could all have been avoided if they had just done a simple thyroid function test when they should have at 6to8 weeks and again at 3 months then six months. I was too trusting of the Doc's and left my health in their hands but was so ill at the time hardly knew my own name let alone trying to fight to get the right treatment. To be honest I didn't know anything about thyroid desease till I came across this site 2yrs ago and thanks to members on here have learnt so much and now question everything to do with my health and fight tooth and nail hence I'm on T3/t4 combo meds now thou for how much longer that will last I don't know, and that's a big problem for us all .
That's dreadful. To think that the people we put our trust in should be so negligent. They obviously didn't think that everyone reacts differently to rai. And why oh why didn't they do a simple blood test it just beggars belief especially after the treatment you had had 😡🙄
A terrible case. I understand the lack of detail makes us cautious to comment, but in terms of the prescribing, some people totally trust their doctors and the tablets. If told to take something, they take it without question. My sister is like that - she takes pills like smarties and never bothers to look at the side effects or into the condition she has. It drives me nutty!
Also, not everyone can take responsibility for managing their own care, especially with some kinds of mental health issues.
The lack of blood testing following the RAI is negligent. Although there may have been other issues that exacerbated the reaction, having a TSH so high cannot have helped. Although not in this country, we know there are people on this site who feel after RAI or thyroidectomy they are left to go it alone.
I wonder if they gave the patient T3 as well as T4 to help with recovery?
It’s so sad that thyroid patients seem to get such poor treatment or face so many misunderstandings in so many countries.
The lack of blood testing following the RAI is negligent.
I cannot come to any other conclusion. I would, however, include the way in which all too many hyperthyroid patients are catapulted into hypothyroidism by anti-thyroid medicines.
That we see so many who seem utterly unaware that is likely to happen, and do not know what to do, compounds the negligence.
Although in itself insufficient, anyone post-RAI or on anti-thyroid medicine should have an "open" blood test form which they can use anywhere in the UK to get tested when they notice changes. They should not have to wonder what is happening, arrange a GP appointment, arrange a blood test appointment, and eventually get tested.
(Imagine, if you will: Sometime in the next few months, you will break a leg. When that happens get an appointment for an X-ray... It is predictable that it it will, or is at least likely, to happen.)
I agree. Along with the fact that those who have had their thyroid removed or totally destroyed by RAI or long term hashis should be first in the queue for combination therapy. My thyroid might be shrivelled, but there’s an outside chance it might squeeze out a bit of T3. Total destruction means no chance. I also think RAI seems like such an antiquated approach - I’d have thought they’d have found something better by now. Mind you - same argument could be used for not prescribing NDT and going by TSH (the more modern approach) and we know the consequences of that. So maybe I’d better not speak too soon! 🤸🏿♀️
Not only predictable, I've seen articles written for a doctor audience saying hypothyroid following RAI is part of the treatment working as intended, not an accident in any way.
Yes - you will have seen that. But I think it is only truly intentional when done for thyroid cancer when the aim is total destruction of all thyroid tissue. The aim for Graves is to destroy just enough to stop the person being hyperthyroid.
That is difficult. First of all, because getting just the right dose is requires fine judgement. Second, the TSH-receptor antibodies (Long Acting Thyroid Stimulator/LATS) can and do vary. Destroying thyroid cells doesn't actually stop the thyroid being stimulated by the LATS, just restricts the maximum amount of thyroid hormone the thyroid can create.
Many asylums in years gone by were full of thyroid patients who were considered 'mad' so this isn't a new phenomena unfortunately - its also my opinion that bi-polar is thyroid related as well. It is very sad that the field of endo is still so far behind. See this document. ncbi.nlm.nih.gov/pmc/articl... (click on complete article).
First, we were discussing that the issue of asylums and "women in attics" and so on might, at least some of the time, have their origins in thyroid disorder.
Second, I just wanted people to know the paper your link goes to. I found the fact that it is a paper published in 1898 both interesting and tragic - that about 120 years later, medicine so often fails to appreciate what William Ord wrote.
I know it is tragic - thyroid disease treatment was badly served when the blood test came in - as Drs used to diagnose by loss of hair - tiredness - etc. - because they knew how serious it was. Some of the very rare symptoms mentioned here I had - my clavicle dislocated and it is mentioned here the fatty deposits on the clavicle and how the clavicle can be affected. I could go on forever ............I am glad you found it interesting.
Thank you for sharing this link. It is chilling to consider how easily what was learned over a century ago has been abbreviated down to black-and-white, zero-or-one logic for healthcare providers: it isn't myxedema unless one is on death's door with a symptom that could never be attributed to anything else; otherwise, all of the symptoms are quite invisible to the trained eyes of people who have been through nearly a decade of medical training.
And the surgeon who treated me for a hernia recently had the ignorance to suggest I should never investigate my health condition to better understand it, but should leave it to his expertise. He said this while I was being prepared for surgery. When I next saw him, he had to admit that he had misjudged and had to poke around after he had sliced me open, dissecting my groin, to find where the problem really was, so that he could finally repair the tear. And I attribute the hernia to the hypothyroidism that went untreated at first and then became more profound as the levothyroxine treatment caused me to become profoundly hypothyroid.
Life can be a hard teacher, and what doesn't kill us can ultimately make us stronger, if we learn our lessons well.
I can particularly relate to “the gradual development of a suspicious frame of mind”; and still today 1 year after diagnosis and treatment I have this symptom on occasion.
J Neurol Neurosurg Psychiatry. May 2006; 77(5): 639.
doi: 10.1136/jnnp.2005.082198
PMCID: PMC2117466
Myxoedema and Sir William Withey Gull (1816–1890)
J M S Pearce
Author information ► Article notes ► Copyright and License information ►
This is a brief history of hypothyroidism and the contribution of Sir William Withey Gull. Hypothyroidism and its complications provide many clinical puzzles for neurologists.
The thyroid had no known function until the end of the 19th century. In the wake of the term coined by Claude Bernard (1813–1878) in 1855, "internal secretion", and his concept of the milieu interieur, Sir William Withey Gull in 1873 was one of the first to understand that the cause of myxoedema is atrophy of the thyroid gland.
Gull's seminal paper1 related the changed appearance of a Miss B:
“after the cessation of the catamenial period, became insensibly more and more languid, with general increase of bulk… Her face altering from oval to round, …the tongue broad and thick, voice guttural, and the pronunciation as if the tongue were too large for the mouth (cretinoid)… In the cretinoid condition in adults which I have seen, the thyroid was not enlarged. …
There had been a distinct change in the mental state. The mind, which had previously been active and inquisitive, assumed a gentle, placid indifference, corresponding to the muscular languor, but the intellect was unimpaired… The change in the skin is remarkable. The texture being peculiarly smooth and fine, and the complexion fair, at a first hasty glance there might be supposed to be a general slight oedema of it… The beautiful delicate rose‐purple tint on the cheek is entirely different from what one sees in the bloated face of renal anasarca.”
Four years later, William Miller Ord (1834–1902)2 introduced the term myxoedema. Like Graves' disease, it was generally considered an affliction of the nervous system, which shows how little was known of the thyroid. William Smith Greenfield (1846–1919) of Edinburgh, who examined pathologically one of Ord's myxoedema patients observed that it was the antithesis to exophthalmic goitre. In his Bradshaw Lecture (1893):
‘In thus discussing Graves' disease, even provisionally as a disease of the thyroid gland rather than of the nervous system, I am aware that I am opposed to nearly all English and American physicians of eminence.'
but Kocher even 10 years later observed:
“Surgeons had simply assumed that the thyroid gland has no function whatever…”;
And Jaques‐Louis Reverdin asked in 1882:
“Can it be that the thyroid body whose functions are still obscure plays a part in haematopoiesis so important that its ablation produces such profound trouble?”
George Redmayne Murray(1865–1939) of Newcastle, stimulated by his mentor Victor Horsley (1857–1916), introduced in Britain the successful treatment of myxoedema in 1891, with injections of sheep thyroid extract.3 A similar success in Lisbon reported in 1890,4 but reported in Portuguese, was overlooked.
The discovery of autoimmune thyroid disease5,6 had to await the 20th century.
Go to:
Footnotes
Competing interests: none declared
Go to:
References
1. Gull W W. On a cretinoid state supervening in adult life in women. Trans Clin Soc Lond. 1873– 1874. 7180–185.185
2. Ord W M. Report of a committee of the Clinical Society of London nominated December 14, 1883, to investigate the subject of myxoedema. Trans Clin Soc Lond 1888. 21 (supp)
3. Murray G R. Note on the treatment of myxoedema by hypodermic injections of an extract of the thyroid gland of a sheep. Brit Med J 1891. 2796 [PMC free article] [PubMed]
4. Un cas de myxoedème traité par la greffe hypodermique du corps thyroïde d'un mouton. Sem Medicale 1890. 10294
5. Weetman A. Autoimmune thyroiditis: predisposition and pathogenesis. Clin Endocrinol 1992. 36307–323.323 [PubMed]
6. Vaidya B, Kendall‐Taylor P, Pearce S H S. The genetics of autoimmune thyroid disease. J Clin Endocrinol Metab 2002. 875385–5397.5397 [PubMed]
Thanks for posting this - really interesting (not just because William Gull was at one point suspected to be Jack the Ripper!)
This bit hit home.
“Surgeons had simply assumed that the thyroid gland has no function whatever…”;
Yes - and a few GPs and endos mentioned on here still seem to be under the same illusion considering the things they say and the way they treat thyroid patients.
‘Don’t be silly dear, you’re normal. Your symptoms aren’t thyroid-related. Maybe you’re depressed. Or insane?’
Yeah, I did their cbt course to look willing without taking tablets and started taking cbd oil. Antidepressants are fine to get over difficult periods of time but not for indefinite use.
It is such a travesty that medical science seems to have ‘unlearned’ some of the things that were researched and well proven about the thyroid rather than building upon that knowledge. It shouldn’t be one or the other, it should be all that informs. I think the desire has been to simplify - but that isn’t possible. Nothing is simple, the human body has such an amazing complexity with so many processes having to work in union to achieve balance. And that balance is unique for all of us - as is our DNA. 🤸🏿♀️
I had to stop taking my meds,t3 only at the time,for two weeks prior to a radioactive scan(6 months after the rai ablation)...the first 4 days i felt ok-ish,day 5 it suddenly it me...by day 10 apart from many other horrible things I truly felt I was going mad....when i saw my gp a few weeks afterwards & told her she looked really shocked...i never want to go back to that again,horrific
I had thyroid cancer,both lobes removed along with 7 lymph nodes as it had spread into 3 of them, i had the radioactive iodine treatment to obliterate any minute thyroid cells that may have remained & the withdrawal from the t3 was to starve these cells of iodine & therefore to make these cells”hungry” for the radioactive iodine ...for me it took four to five days for me to feel the full effects of the withdrawal,it might be different for other people, god only knows how i would have felt if it went on longer than the two weeks....i have never had to withdraw for the many many blood tests ive had
From an article about 8 years old in Huffington Post about Pete Seeger: When Will They Ever Learn?:
I tell everybody a little parable about the ‘teaspoon brigades.’ Imagine a big seesaw. One end of the seesaw is on the ground because it has a big basket half full of rocks in it. The other end of the seesaw is up in the air because it’s got a basket one-quarter full of sand. Some of us have teaspoons, and we are trying to fill it up. Most people are scoffing at us. They say, ‘People like you have been trying for thousands of years, but it is leaking out of that basket as fast as you are putting it in.’ Our answer is that we are getting more people with teaspoons every day. And we believe that one of these days or years — who knows — that basket of sand is going to be so full that you are going to see that whole seesaw going zoop! in the other direction. Then people are going to say, ‘How did it happen so suddenly?’ And we answer, ‘Us and our little teaspoons over thousands of years.’
Hopefully this forum is contributing a good number of teaspoonfuls Not yet convinced I'll be around long enough to see the seesaw tip the other way though
We can join and sing this song too . If it will help I'll do it too . Anyone joining me ? We should join across the glob and put an *End* to this horrific and most definitely uncalled for *TRAGIC EPISODES* .
Poor lady. This is what happens if you don't know enough about your thyroid to question everything the doctors do. I went to a "endocrinologist" ARNP who LOWERED my dosage of Naturethroid when she saw all my labs were too low! I was thrown into terrible diahrrea for three months. She told me she knew all about Graves Disease but she didn't know any of the symptoms or how to read the labs. I have now changed to NP Thyroid and raised my dosage to 1 grain, formerly 3/4 grain which she lowered. I kept telling her I have no thyroid. WHY CAN'T THEY LEARN ABOUT THYROID AND ALL THE ORGANS IN YOUR BODY IT IS CONTROLLING? I am so tired of their bad attitude and treating one like a hypochondriac. I have been very depressed and doctors just want to give you an antidepressant which doesn't do anything to help because it's all about the thyroid!
I had RAI treatment September last year. Prior to having it done I was told by the Endo to stop taking the carbimazole the day before having the RAI treatment. I was also told by the nurse just before having the RAI about stopping my thyroid medication. I was also on steriods for 6 weeks. I had horrendous indigestion for a couple of weeks and had a phone consultation with my GP, who did ask if I'd stopped my carbimazole and if I had been put on sterioids. I saw the Endo 4 weeks later and was told the blood tests were OK and put on thyroxine - 50mg a day. Told to come back in 2 months. Blood test for that visit said my readings were low, so dosage upped to 125mg a day. Back in 3 months time.
The only cock up I had was when collecting my 2nd prescription the pharmacist said my dosage had been reduced, I said it hadn't, turned out he was translating carbimazole and thyroxine as the same medication !!
At last visit Endo gave a prescription of 75mg of thyroxine as I'd just collected 2 months supply of 50mg from my GP. I had a copy of the letter sent to my GP stating that they've given me 50mg extra thyroxine to cover me for 2 months and can GP up my next prescription to 125mg. Had a phone call from the surgery saying that my prescription is there for the additional thyroxine requested by the hospital. Obviously GP hasn't read the letter correctly !!
I do have other health issue, lupus, coealic, Sjogrens, rheumatoid arthritis. When one GP asked if I had any health issues - why don't they glance through my notes - and I started reeling them off, he said 'Oh I think that's enough to be going on with' I just continued and said that obviously he needed to know my medical history to offer a diagnosis.
I so agree with you about it being a minefield, you have to be so on the ball but that's difficult when you're feeling so ill. I've had that when you tell GP your symptoms their eyes start to glaze over and you know they have switched off, so hard to find good doc's these days .
My sense is that the profession is if not uncaring is at least utterly unaware of the misery and ultimately the risk that severe hypothyroidism creates.
That they tend to be blinded by one size fits all practices designed to minimise testing/resource usage which result result in symptoms being almost entirely discounted.
Especially after procedures such as this lady had - they rationalise people's complaints of feeling awful as being down to whinging, and such situations as being only temporary.
My personal experience of this scenario followed a partial thyroidectomy about 14 yrs ago while already severely hypothyroid (due to subsequently proven secondary hypothyroidism which required T3 to resolve) - I was placed on a ridiculously low (50mcg) maintenance dose of T4 for several months pending a completion thyroidectomy.
I was in hell within a matter of weeks, but my consultant refused to act - passing the whole deal off as a bit of temporary discomfort, and claiming I didn't need more hormone.
My then GP wouldn't engage either - but she was already in denial, playing the 'depression, card, and backed into the bunker'. She had despite repeated briefings on the existence of secondary hypothyroidism for many years denied all possibility of hypothyroidism. (ie the reality that many making enough hormone, but unable to use it properly due to downstream problems are hypothyroid and likely need T3)
This much like the consultant by ignoring symptoms, and relying entirely on the stock T4/TSH tests. 'Your thyroid is perfectly normal'. 'Yes, but I can't use the hormone....'
I ended up traveling to the UK to see Dr. Skinner in Birmingham the following week - who immediately based on symptoms diagnosed severe hypothyroidism and placed me on a massively increased (x4) dose of T4 - with the possibility of trialing T3 if it wasn't effective.
It since I needed T3 didn't resolve the situation, but it did return me to where I had been prior to the partial thyroidectomy - hypothyroid, but just about coping.
I never made it back to Dr. Skinner since the pathology report identified a Hurthle cell thyroid cancer, and a completion thyroidectomy was scheduled for a few weeks later.
Even then (despite my handing him Dr. Skinner's report) the consultant flat refused to up my dose or to prescribe T3. I got by only because I still had Dr. S's prescription.
I switched immediately to a young consultant who after considerable pressure finally agreed to trial me with T3 (magic results - a clear head within a few hours, and an upwards profile which continued for over a year) - and the rest as they say is history.
Even that guy I'm pretty certain would never have trialed the T3 except that I had been diagnosed with a dangerous thyroid cancer. So he was keen to see my TSH suppressed, and presumably wasn't going to risk liability in the event of a return of the cancer since I'd also briefed him in writing on the likelihood that I suffered from secondary hypothyroidism.
He was to be fair to aware of the possibility of secondary hypothyroidism, but acted as though he was hog tied by norms...
What a terrible case, and frightening to anyone who has felt mentally 'odd' at any time while hypothyroid (all of us?). When I worked with homeless people I got to know a lovely lady, a former social worker, who ended up homeless and sleeping on the streets for SIX YEARS after becoming mentally ill and losing her job and her family due to being hypothyroid. She was not diagnosed until she came to Cambridge where she collapsed in the homeless hostel and was taken to hospital for tests. Since becoming hypothyroid myself I have often thought about her, a simple blood test could have avoided all that heartbreak and suffering and some subsequent health problems which could not be reversed.
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Not yet convinced I'll be around long enough to see the seesaw tip the other way though 
Long-Term Antithyroid Drug Treatment of Patients With Graves’ Disease
