We see repeated failure to take seriously, failure to diagnose properly and long term consequences. Although not thyroid, this is an interesting article which raises the profile of autoimmune encephalitis.
Lucy Dawson: the model who got a mystery headache, a misdiagnosis – and a new mission in life
When she began experiencing head pain as a student, Dawson was diagnosed with a breakdown and sectioned. She actually had encephalitis. Five years on, now paralysed in one leg, she is speaking out for disability rights
Simon Hattenstone
Wed 25 Aug 2021 06.00 BST
Lucy Dawson was skating through life. Everything came so easily to her: she had friends, confidence, academic success. At the age of 20, she was studying criminology at the University of Leicester, determined to join the police. Then, in the summer of 2016, she got a terrible headache that refused to go away.
The headache was to change Dawson’s life. It took almost four months for her to be diagnosed with autoimmune encephalitis, an acute inflammation of the brain that leaves many people with permanent brain damage and has a mortality rate of about one in 10. She was showing classic symptoms of encephalitis from the off (confusion, personality change, hallucinations and the headaches) which should have been spotted within a couple of days.
That woman's treatment was absolutely shocking and I hope she got a ton of money from the NHS as some compensation for what she went through, although I'm sure she would prefer to have a functioning leg rather than money.
But sadly, it doesn't really shock me as much as it ought to because I've become somewhat desensitised to the failures of the NHS and the medical profession thanks to my own health problems.
I'm sorry to hear that. I hope your problem turns out to be treatable and that you can recover back to the way you were before yesterday. Not only that, I hope you actually do get treated rather than being gaslighted and sent home.
I have often thought of the irony of people using the internet in respect of health issues when they themsleves are in a waiting area, in a hosptial bed, etc.
Don't remember anyone actually on an operating table posting...
But I do sometimes wonder what internet pioneers and medics make of it.
Not at all surprised! I have always been shocked to observe the “wait and see” attitude of doctors within the NHS…. Never exploring further if a test does not indicate what the problem might be, they just stop until the patients’ health deteriorates further and/or die. It is sloppy…. They always are “so sorry” insisting they will “learn from their mistakes”! Just empty words because nothing ever changes as we all know too well.
That would be the obvious course of action BUT we know it will never happen… medical schools are stuck in aspic regarding their curriculum and ways of teaching. Also, they know how powerful the world of medicine is, thinking themselves so superior and therefore being untouchable! We all have come across many useless doctors and we wonder how they actually became doctors! I believe this is getting worse.
Totally agree! This story and the many other similar stories out there does not surprise me in the slightest.
I don't think it helps that so much is learnt out of a text book now and not on the job.
The medical profession really do not like people using the internet to self diagnose and do not like to be questioned!! But I have learnt so much from websites like this.
My daughter got POTS when she was about 14 and through research myself and a brilliant site for POTSUK we were able to manage things but the doctors were in no way helpful.
I am glad to have read this article as it has made me more aware of encephalitis too,something I was not really aware of before.
Totally agree with you, useless doctors do not like patients to behave in an intelligent way and doing sensible research in order to help themselves finding the cause of their health issues because we are nearly always let down by them. It indicates we don’t trust them: quite right too! I think there must be a big Red Cross by my name at the surgery as a warning that I do research…. However, it has helped me in pushing GPs to be more useful…. I had to fight very hard to get some tests and treatments which they kept on refusing stating it was not validated! Well done you for helping your daughter. Clearly we can’t trust most doctors, they only cope with the usual problems but seem unwilling and unable to find the root cause(s) of more difficult health situations.
Thankfully more people (but not enough!)are starting to wake up and realise that the medical profession is not always right.I used to have a really good doctor who also practised homeopathy. He has sadly now retired but I'm sure he was'helped along the way out of the door' Perhaps he did not 'push' enough drugs.
I'm sure many medics must leave the profession, as they enter it wanting to genuinely help people but sadly the system is all wrong. Same goes for teaching in schools but that is obviously off topic!
Good genuinely caring doctors are becoming a rarity.... They are told what to do or not to do by an uncaring government! It must be frustrating. Not all doctors enter the profession to care though. Some rather like the status and the money regardless of their ability.
Thank you for reminding me…. Will look it up again. What a sad corrupt world. One would think it would be possible to trust doctors with our lives, after all that’s what they state clearly they wish to do when deciding to study medicine. Alas, not so. It is so disheartening. I can remember the good old fashion family doctor of my childhood days, yes a long time ago, if feels like centuries ago. He knew the whole family and didn’t drive an expensive car and he was available day and night. This was in France but I assume it was similar, perhaps, in England in the mid 40s, 50s and 60s?
Now it’s a battlefield…. Unfortunately patients lose out and the doctors still carry on practicing, earning large salaries and enjoying a good lifestyle. Yes, a few are perhaps still caring. One is lucky to come across such a gem.
I had same …when they diagnosed me with thyroid issue few years back when my TSh was under 10 they said to me your thyroid looks like it’s struggling but we won’t put u on any treatment at the minute as we will wait and see in some cases it might come back to normal so they left me suffering till my tsh went to 44
Aim trying to find my own ways I literally was bed bound and was in my late 20s only it was awful I started to educate myself as I was put on Levothyroxine only from nhs but I discovered DIO2 issue also but all thanks for thyroid groups Iam ok again still doing my own ways eating healthy stopped smoking detoxing from heavy metals etc . I buy my own med NdT from USA for many years now and there is no help from nhs at all . It’s waste of time to go there and tell them this I been there done this and was sent home with antidepressants .it’s so so sad so many people are suffering .
Oh yes, doctors prescribe antidepressants like there is no tomorrow…. Like sweeties. Let’s face it, a patient whose mind has been dulled by antidepressants is so much easier to handle AND once they “diagnose” depression then there’s no need to investigate further…. Problem solved!
I had anxiety and panic attacks before was diagnosed with Hashimotos and thyroid issue they put me on antidepressants on and off when I came finally off them I developed severe Hashimotos and hypothyroidism then when I was told to see nhs endocrinologist he told me I should go back to antidepressants
Why aren’t I surprised? Consultants, with the exception of a few, are no better, especially endocrinologists… Most haven’t got a clue about the thyroid gland, too complex a subject but they insist they know it all.. Do hope you are improving.
Improving but damage has been done I been misdiagnosed around 10 years or even since my childhood no one told me that 5.48 tsh wasn’t good enough and before that in 2011 my tsh was 3.86 all the time as well .Thanka you so much wishing u a good health
Really feeling for you. The medical professionals are really not well educated and are too well protected so they get away with everything! Hope you can get more improvements despite all the negligence you have had to cope with.
Similar to me bar the age, you were so young. I think mine started in my 30’s and got much worse in my 40’s, I struggled on till I was 52. I had asked repeated doctors if I might have a thyroid problem as my mother did but I was told it was the menopause 🙄 but I still felt ill after the menopause. I had given up, convinced I was a crazy hypochondriac, but things began to get really desperate and I suddenly decided to see a doctor and refuse to move out of their surgery until I was given a thyroid function test! Luckily I got a doctor who did listen and sure enough I was right. I only just got the meds in time to save my life. But I never felt good on Levo yet my relatives on it felt great so I knew something was not right. I discovered later that I have DIO2 polymorph for reduced conversion plus thyroid hormone resistance. I was fortunate to find this forum and decided to try NDT - I have never looked back I feel so much better now. I take ThyroidS . I agree about the poor state of help for people like us on the NHS. It is hopeless if you aren’t suitable for t4 monotherapy
Bless you I hope you feel better through x it’s so sad 😞 I bet there are hundreds who are walking misdiagnosed or wrongly treated . It’s sad to know where world has come to . How did you realise u have thyroid hormone resistance any tests for it ? I also have DIO2 gene from one of parents . Iam on Ndt .
Yes I am sure there is a lot of unnecessary suffering out there because of poor diagnosis and treatment . I had a 23& me kit, an older version that had DIO2 on it - they have since removed it 😬🙄😬 and the thyroid hormone resistance . You have to find out the relevant SNPs (on SNPmedia) and look them up in your raw data and see what combination you have and if it is relevant, it’s a bit fiddly but interesting to find out.
There is also the issue of iron deficiency which I am just experiencing myself. We keep being told it's normal range and they never do a full iron profile, even in A and E when you end up in there with palpitations. I have just been put on iron 3 times a day by my GP after my private Endocrinologist asked my GP to do one. Now my GP is suddenly concerned about my really low iron levels and told me it has been dropping since 2013. Nobody bothered to tell me. I have now told them that I want regular testing for iron levels, which they have agreed to do. I am still waiting for my celiac blood test results. My past 6 times in A and E this last year has shown me how awful it is and no one seems to know what they are doing anymore, or even care about you
After years of unexplained symptoms, someone eventually has a blood test that shows extremely low ferritin. (Largely because other possible iron tests are often not done.)
Treatment commences (usually an oral iron supplement such as ferrous sulfate) - and, luckily, ferritin rises from extremely low to being within reference interval (range). So no more iron treatment.
Months, even years, later, symptoms have returned. So, again only if lucky, another short course of iron supplementation.
The patient might well have found the iron supplement chosen has horrible side effects. If that is the case, change to another one. Several are prescribable, and (if the patient can afford) there are many available over the counter. Sticking to one which is unpleasant will tend to recruit the patient to the stop-as-soon-as-possible camp.
Repeat indefinitely or until patient or doctor gets bored and gives up.
The concept that if someone is not absorbing sufficient iron to maintain adequate levels is the underlying issue seems to escape everyone's attention.
Quite possibly, a relatively high dose supplement for a few months will restore iron levels. But if the failure to absorb is not addressed, it just becomes a roller coaster.
It could be as simple as inadequate iron in the diet. Or the impact of low stomach acidity (due to medicines or hypothyroidism, among many other possibilities).
One obvious, and extremely simple, approach is simply to reduce the high dose to a low dose iron supplement. And keep that going - possibly indefinitely.
(This deliberately ignores the issues of excess loss of iron. Mainly because of the possibly serious issues which can cause that. But the roller coaster effect can and does still happen.)
I know and this is why I am not letting them get away with topping up my levels and leaving me again. Something is definitely going on if my levels have been dropping since 2013. When I had my 3 children I had an iron level of 10 and was put on iron 3 times a day. My youngest is 27 now. They just put it down to me having babies, and I am only just over that level now at the bottom of the range, and they think that's acceptable. I didn't realise until now that we can have low iron as well as Pernicious anaemia, which is what I have too. I thought we had one or the other
Sadly this is becoming the norm. I find I have to ask for print outs of all my blood tests etc so I can try at least to keep on top of things myself otherwise you will just become 'lost in the system' We need to take things into our own hands more as no one cares more about us than ourselves I'm afraid. Too much unncecessary paper work nowadays for fear of being sued and not enough proper work! I wish you well going forward.
Oh! the poor woman. Another let down by the medical professionals.
My mother died due to her GP telling her she needed no more B12 injections - she died due to developing stomach cancer caused by withdrawal of B12. My sister and I had to plead for pain relief to be given more fequently at end-of-life.
It is an awful experience when it concerns a beloved member of the family.
I had serious misdiagnoses by three GPs in my local practice - including the most senior GP - none of whom performed a physical examination, which would have immediately alerted them to severe problems with my liver.
It was disgraceful and it took two years and the wisdom of an out-of-hours doctor to move things forward. Went to said doctor due to being in agony. He carried out a physical exam, identified that my liver was very enlarged and that I should have an ultrasound scan to find out why.
When I went for the scan, the sonographer was chatting to me about what had been happening with symptoms over the two years. Thinking she was just being friendly, I told her what had happened with the three GPs and their differing 'diagnoses' (which included the possibility of a shingles onset, and that it was me 'just getting older' because I was unable to tolerate alcohol).
Little did I realise that the sonographer was in fact a doctor, who contacted my surgery and (quote from the GP whom I subsequently saw at the surgery) 'read the riot act' with her. The doctor/sonographer told the GP that she had never seen such a dreadful liver in her entire medical career and lambasted the surgery for not taking me seriously, not taking on board all the symptoms I was telling them about, nor carrying out a physical examination. I really felt sorry for this particular GP as I'd never seen her before so wasn't one of them who had misdiagnosed.
Knowing what I know now about my condition (autosomal polycystic liver disease), I am astounded by the ignorance of the three GPS as I was presenting with all the classic symptoms - including referred pain in the right shoulder, which is a classic sign of liver problems (the senior GP said that this was likely fibromyalgia and when I stated that fibromyalgia affected all of the body, he said it was localised - which is utter tosh as there is no such thing as localised fibro).
I also now know that liver cysts can rupture, bleed, become infected, and, occasionally, require urgent surgery (and liver transplant in the most severe of cases).
Thank goodness the out-of-hours doctor was on the ball; heaven knows what might have happened if I hadn't have seen him that dark February night....
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