Sorry, sincerely do not want to upset anyone, But...

I saw a new gp yesterday, I really went off on one, don't feel up to going into detail today. he Refused to acknowledge that untreated under active thyroid can cause death in Anyone, I wondered if you could help me out, please.

I know that I recently (in the past few weeks) someone here had written about the horrifying story of her friend, who in fact died. If I remember rightly, the gp and endo had been suspended ? until Coroners investigation. Could anyone flag up this post for me please. As I say, I do not want to upset of offend, but I do want to be able to prove him wrong.

Many Thanks, and my sincere condolences to the ladies' friend and family.

Evey.

25 Replies

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  • hi evey,

    unfortunately I don't think you can use 'this' particular case to argue with your GP, what I mean is: unless the story has been 'published' somewhere I don't think the GP will take it seriously?

    I do remember though not so long ago of a story (real of course) that has been published/written somewhere publicly, maybe that one will be better, if only I could remember what it was now....

    if I do remember I'll of course post it here x

  • Was this the one you meant - see below? x

  • yes thanks :)

  • This is a very sad case I remember reading about, although not the one you mention. It is about a journalist who was originally diagnosed with hyperthyroidism, but went on to develop hypothyroidism:

    irishtimes.com/news/health/...

    Hope this helps. xx

  • Perhaps this will help?

    thyroid.org/thyroid-physici...

  • I was speaking to a colleague earlier this week and he told me about a friend who visited his GP many times but his thyroid problems were not picked up for many years. He became very poorly and almost died. Thankfully he was taken into hospital,diagnosed and is very well now.

  • You could try showing him this. It is rare for hypothyroidism to be untreated long enough to cause this but it can happen.

    patient.co.uk/doctor/Myxoed...

  • Hi evey i have fibromialgia thought i had a flare up of this 2 years ago but wasnt getting better which i normally i did. went backwards and forwards to my gp who told me to go away for a year he couldnt do anything more.i was so ill i came up in big sores no energy at all depressed piled on the weight thought i had lupus so i ignored my gp and wrote a letter and a list of symptoms and sent photos to a lupus centre they wrote back suggested i go to dermatologist so another gp sent me and low and behold he found that i had Hashimotos so i would write to a endocrinologist with all your symptoms and then take the reply back to your gp Best wishes xx

  • Hi.

    I hope that this research helps you: -

    Relation between free triiodothyronine/free thyroxine ratio, echocardiographic parameters and mortality in dilated cardiomyopathy

    eurjhf.oxfordjournals.org/c...

    The figures in Ng/dl etc I converted to pmol/l and show that the Free Triiodothyronine (FT3) Danger-Zone for Dilated Cardiomyopathy (DCMP) is 2.9-->5.4 pmol/l with a mean value of 4.0 pmol/l. (Stupid really, how can there be a range starting at 2.9 pmol/l?)

    With a healthy FT4:FT3 ratio of 3:1 it will be seen that the lower limit of the Free Thyroxine (FT4) Normal Range must be at least 16.2 pmol/l, which is not so far from a Thyrotropin (TSH) upper limit of 2.5 mIU/l.

    I think that the fact that Free Triiodothyronine (FT3) deficiency causes Congestive Heart Failure should be sufficient to your cause.

    Be prepared to shoot the doctor when he/she says that in their "Professional Opinion" the study is meaningless.

    It might also help your cause to review

    Pilot study on the assessment of the setpoint of the hypothalamus–pituitary–thyroid axis in healthy volunteers

    eje-online.org/content/162/...

    GOOD LUCK

  • Hi

    I was just thinking about the games the medical professionals play.

    The UK definition of hypothyroidism does not include "Non-Thyroidal Illness Syndrome" ("Low T3 Syndrome" & "Euthyroid Sick Syndrome")

    In the disingenuous manner with which we as patients are treated, the reality is that it is Free Triiodothyronine (FT3) deficiency which kills.

    Thus technically under the UK definition of hypothyroidism, we cannot be caused to die prematurely.

    As I have said many times the whole thing is farcical

    The UK medical profession has joined the Dork Side and is relying on the Farce.

    No Matter What, Try To Smile: Stress aggravates Hypothyroidism :-)

  • Thank You, all for taking the time to reply, I will read these tomorrow.

    I had to laugh, mighty mouse, (or I will cry) at your final comment. I Will try to smile, although I don't feel like it just now. It has taken me two hours to write about my doctors appointment, got to the preview, and my page closed down and all my effort was wiped off the screen !!!!!

    I'll have to: try, try, and try again...........but not tonight, time for bed, if I can sleep..........

    Evey,x

  • This has happened to me and is so frustrating :( I tend to copy and paste what I have written into word before previewing it - that way I still have a copy if the system crashes. xxx

  • Perhaps he would like to see my mothers Death Certificate?

    She died in a Myxodoema coma.

    After thyroidectomy many years previously she became hypo and put on thyroxine. She took to her bed too tired and breathless to get up and despite my dad calling out the doctor on many occasions - told she was just being lazy even though she was getting confused, breathless etc.

    One morning I got a frantic phone call from my dad saying he couldn't wake up my mum. I told him to call an ambulance which he did. She was on life support for 3 days and she did come out of the coma, still very confused and rambling. She died the next morning.

    Even though the doctor had been called many times, NO ONE thought to check her thyroid levels. An appology from the hosptial was unable to bring my mum back............x

  • Oh my, that's just so sad and I'm so sorry to you and your dad for having to go through that. That's really made me cry this morning x

  • So sorry about the treatment your mom received .. I agree ... an appology is useless how can they take this illness so lightly and why do we all have to suffer and fight for anything to be done.

    My mom also passed away without even being diagnosed or treated for hypothyroid , she was ill for a very long time she was eventually diagnosed diabetic and had arterialsclorisis which was too far advanced at that time to treat they never tested for thyroid.

    She couldnt walk was registered disabled, her hair fell out and she couldnt get out of bed at the end, she was breathless for a long time,lifting her arms above her head to try and get some air into her lungs, my dad called the doctor many times but he wouldn't come so eventually my brother went down to the surgery walked passed the receptionist into his office and gave him two hours or he was going back to fetch him ... he did turn up at 4-00pm told her to stop making a fuss she had a bit of a cold and would be running around the following week .... she passed away at 7.30pm !

    This was in 1978 she was 52.

  • It does seem a bit of a similar senario, Cein.

    I lived a couple hours drive from my mum and dad's and I was the one to actually diagnose that she was hypo - which she was treated for, but obviously not closely monitored.

    I also had the situation when I drove over one day and she was in such a state that my dad told me that the doctor had been the previous week and given her antibiotics for what???

    I drove to her GP and had to deal with a snotty receptionist who said that I didn't have the right to call out the doctor, the patient had to do it!

    I said, the patient is not capable as she is so ill and I am requesting a home visit, I have just found my mum so confused that she is trying to wee into a pudding basin as not only can she not make the toilet, she doesn't know where it is anymore. I am not leaving this desk until you assure me that a doctor will visit.

    After I received the promise after going back to see mum and dad, I had to leave - one of my brothers still lived at home at that time so I felt it safe to leave after he got home from work.

    That was the time that the doctor said she was lazy and needed to get out of bed - the rest as you know, is history........x

  • hugs xx

  • s

  • That's awful sorry for your tragic loss x

  • Have you all signed the petition for better thyroid care and treatment .. re sending to Parliment ?

  • yes, I have, and will willingly sign as many as it takes.

    Evey.x

  • :-) x

  • Crisis cases like these really push the issue into the limelight, and bring home the impact on family and patients of thyroid issues. It's not good enough for the system to make appropriate noises and just carry on as before.

    What's equally the case, but also very hard to get notice taken of is the way that even moderate hypothyroidism by the common measure destroys lives. (it can actually be the catalyst that places us on a path to elarning critical life lessons too, but they tend to be damn hard lessons)

    I wrote a bit yesterday about the realpolitik of getting diagnosed vs the state of knowledge of the topic. How can it be that there remains such a gulf between knowledge and practice?

    The pity with all of this is that whatever about back in the day there's little now that hasn't been proven by respectable research regarding the effects and consequences of mis- or non-treatment of thyroid issues.

    Especially regarding moderate hypothyroidism which has major life and longer term health implications, but which is so routinely ignored. The system has got to step up to the mark - that's move on from 19th century thinking where preventing immediate death through gross myxedema (and to hell with concerns about pateint well being) was deemed a total success.

    There's a major major gap now between what's well known, and de-facto medical practice on the ground - and it seems next to impossible to reconcile the differences. Even worse it seems likely that the switch from symptom led treatment to managing replacement based on the TSH/T4 blood values has actually worsened the management of hypothyroidism.

    The odd 'accident' is inevitable, but it's hard not to conclude that indifference, hubris, bureaucracy, fear, perceived cost (how can almost condemning people to chronic illness be cost effective?) lack of care and lot of similar negative factors are not central to all of this....

    ian

  • Sorry to go off the point a bit here but I work in the legal profession in Probate. Recently I came across a death certificate which gave as primary cause of death "Vitamin B12 deficiency". This wasn't a recent death but it did rather make me wonder what other issues this poor woman may have had at the time and why it wasn't noticed or dealt with.

    I just thought it flagged up all our concerns that deficiency of any of the vital hormes can have dire consequences.

  • So sorry about your mum Boo, it must have been a terrible time for you.

    As for their apology, well, that means nothing to them, it's just something they have to do to try and save face.

    I remember my mum nearly ended up wheelchair bound or near dying when I was about ten. For years, she was taken off to the hospital monthly, ambulance bell ringing, with haemorrhaging. They had given her last rites, then she complained of a sore neck, and a doctor clicked on right away, it was her thyroid = she had

    hashimoto's, treated then, with a liquid thyroid, and made a good recovery. Then big pharma stepped in with thyroxine. her health was never at a premium after that and she was left on this for the next 40 years ! I've had 20 years of being fobbed off, it is Not happening any longer, I've had enough.

    I will put up a fresh post soon re: my gp's appointment, but that's another story!

    Take Care.

    Evey.x

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