This forum saved my life!!!

I thank everyone on this sight for for there help and support and most of all there empathy.

I only joined this forum a few weeks ago, I have learnt so much, and received such valuable information and support, to follow a brief outline, I have promised to do a full case storey later, when I am feeling better.

2008 aged 48 I presented my self at the local hospital's A&E in desperation for an answer to my dreadful symptoms. This was the start of my heinous treatment for this dehabilitating illness and my five year battle to receive the correct treatment and diagnosis for my chronic illness. A basic human right!!!!!

The start of my nightmare .......

I was sectioned under the MHA section 2(this meant I could be held for 28 days against my will) I was dragged out of the hospital by two policemen and taken to the local mental hospital to a secure wing! I was transferred the next day to a private clinic, as I was fortunate enough to have private medical insurance. After a 10 minute interview with a Phychatrist I was diagnosed with Bipolar 1 and forced to take Antiphycotic medication(they informed me if I did not they would place under a stronger section for six months a total no win situation. I knew I was not Bipolar ! Days later after many medical exams I was diagnosed with Graves Disease and the wonder Endo who diagnosed me informed me I should be on a surgical ward not a mental ward. An answer at last. The Phychatrist refused to back down from his wrong diagnosis(now proven) I had no previous history of Mental illness. I do believe I had thyroid trouble from birth or childhood due to my extensive research I have done for example late puberty age 17, my body size through my life from a size 6 to a size 24 with no dietary changes at least 12 heartbreaking miscarriages.My arms ached to hold a baby of my own.

I was forced to carry on taking Antipsychotic Medication and my thyroid was treated by block and replace until the end of 2011 and I also proved I had been misdiagnosed Bipolar and taken off all Antipsychotic medication too. If anybody should dare too tell you there is no stigma to Mental Health in this country they are liars!

This disease and misdiagnosis of Bipolar has cost me dear!!

My beloved husband and partner of 30 years walked out on me in 2010 taking my most wonderful and much loved young children with him and served me with divorce papers sighting Bipolar and unreasonable behaviour as cause, and wanted full custody of our much wanted and wonderful children. We are now very sadly divorced, but I put up a strong and hard fight battling against the misdiagnosis of Bipolar and the right to have at least 50% custody of my cherished children. I won this right, but the cost was huge!!!! Not only financially (over £100.000) I was fortunate to have been a successful businesswoman. The cost to my health was devastating my body went into complete and utter meltdown the chronic pain and lack of sleep and my appearance was hideous, my darling children did not want to be with me. With the passing of time and sharing my experiences with you my fellow sufferers I can share my dreadful experiences and symptoms about the aspects with a bit more nuance, instead of being over emotional by my own personal experience, and by telling of my own horrific personal experience, I do not want this to happen to anyone else. How did I expect my ex to understand this chronic disease when the Medical professionals did not either who are much more educated than him. One of the marriage vows "in sickness and in health" chose to believe the mental diagnoses given by the private clinic used by the rich and famous. My TSH level was fine, I was not,give me the respect of knowing my own body! It's all in my mind!!!!!

On the 15th of February 2013 I tried to see my GP my symptoms were worsening it took till the 20th to see my GP I was rushed to hospital via ambulance in AF and admitted to the coronary ward ( I was too terrified to go to A&E by my self for the fear of being sectioned again. Imagine my horror when a Endo appeared at my bedside(I had been a private patient of his in 2008 until I stormed out of his office in 2009 in sheer frustration tearing up my notes as I stormed out after he kept telling me TSH level was fine)he did not regonise me due to the huge physical transformation of my body. It's a wonder I did not have a heart attack there and then!!!! I asked him what my TSH level was he informed me 6 I relied that's not normal. He argued back that it was!! I asked was there any chance of having Free T3 and Free T4 tested he replied no need as my TSH was normal. He wanted to do a further blood test which would be able to detect if I had a clot! depending on result I could probably be discharged later and see him in month. Hell would have to freeze over for that to happen!!!!! I argued that as he was taking blood anyhow would he not to it to ease my anxiety I even offered to pay I appealed to his junior doctor and asked what harm it would do, I was to scared to make a big fuss for fear of being sectioned again. My Endo stood at the end of my bed, he made no physical examination on my right neck was a lump probably a Goitre which my own research has proved is the result of too much T4, he walked off. I bust into tears, the nurse on the ward questioned why I the nerve to argue with an expert she too walked away. After a while his junior doctor came to tell me the test proved it was highly probable I had a clot and they were going to send me for a CAT SCAN I was devastated, I asked had the test I requested been done, he assured me it had but no results yet.

Later the heart doctor appeared at my bedside with five other doctors, I thought I must my dying to warrant such medical attention!!! He informed me I was correct my levels where vey high. At last an answer five years later

TSH 0.1

Free T4 of 54.4

Free T3 of 36.2

Troponin T less than 0.03

THYROTOXIC

If I were physically able I would do a cartwheel.

If any one wants to ask a question or send me a private message, I will reply when I can. Thanks to your replies re my much loved brother and his Fibromyalgia, he is know going to have the correct thyroid function test(his long term partner left him too, saying it was in his mind)

Updates to follow. you have shown me more empathy than my own family and friends.

34 Replies

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  • Sorry for any typo's spelling due to hand tremor and using iPhone and brainy fog.

  • Crikey, you wrote all that on an iphone with hand tremor and frainy bog!!! So pleased to hear things are finally moving forward :)

  • My heart goes out to you and my hat comes off to you. Wishing you all the best for the future.

    Jo xx

  • ((hugs)) what awful treatment

  • The very same thing happened to me when I was thyrotoxic. My own GP (whom I had not met before being a relatively new patient) told me that I was a hypochondriac with anxiety neurosis and it was not possible to be thyrotoxic, since I had had most of my thyroid removed 17 years earlier at age 18. (Because I was thyrotoxic then!) I kept telling him I recognised the symptoms.

    He put me in the local psychiatric ward and I was released later as a day patient, everyone saying I had had a breakdown, I was not feeling any better but kept my mouth shut so I didn't have to go in again, just went each day to keep them happy(despite palpitations and diarhoea every day, not to mention insomnia and 2 stone weight loss). This went on for a year. I had 5 minutes of fame at one point when I got so angry when I had been arguing with a Psychiatric Social Worker over my condition which he said I needed to recognise was psychiatric - I ran out of the 'counselling group' in such a rage that I slammed the door so hard the whole doorframe came out and fell on the ground!

    One night I had hallucinations and went into total meltdown and one of my neighbours called the police, apparently I was rolling around on the floor on the broken remains of all my crockery, screaming that my son had been killed (he was about 16 at the time). The police called my doctor, so I am told, but he was on holiday, so a locum came, thank God! She took one look at me and said that I should not be sectioned, I was in the early stages of thyroid storm. She gave me some tablets and some iodine to drink and left when I was calmer, arranged for me to see her the next day. She set the wheels in motion and put me on beta blockers and Carbimazole.

    About a year later when it was obvious nothing was going to stop it (I had Toxic Multinodular Thyroid) I had further surgery to remove the rest of the thyroid.

    I got better (hypo now, obviously) but for me, too, it was very costly. I lost my job as Junior Teacher and Music Specialist, thank goodness my son was old enough to speak for himself or I would have lost him, too. I was never allowed to teach again because of the stigma of the so-called breakdown, since they wanted a guarantee it would never happen again, and no amount of telling them it had not happened in the first place made any difference. All I have left of a promising and much-loved teaching career is a little card with my official teacher number.

    I spent the rest of my working life in an accounts office, and the rest is history, my friend. I am now 68 and retired.

    I just had to tell you this story because I was so moved by your account. Most of all I am utterly shocked that it can still happen.

    When it comes to the Thyroid, they understood it better in the 1900s than they do now. Thanks to the MONSTROUS TSH test there is no ability on the part of doctors to recognise the symptoms any more, either of overactive or underactive thyroid. Even last year my doctor refused to believe that I was needing more thyroxine, preferring to believe I needed anti depressants for a mental problem.

    I also have fluctuated between size 8 (now would be a 6 as all sizes were smaller then) and size 20, and being only 4ft 11in tall that is BIG!

    We are all so thankful to Thyroid UK for helping us to understand our conditions, take control and also have some hope and comfort.

    I really do hope that your future will be better than the past.

    Marie XXX

  • OMG ... please send your blog to the PM, the Health Minister, your local MP & request an interview, and your local PCT/PALS. I have done the last two - will get an interview fairly soon & PALS are working on the other problem. This is an absolute disgrace; I was near to tears reading it. I am so sorry Scarfred for what you have been through and I canot think of any words that would seem appropriate. Keep the strength you have and the determination.

    Good idea to get active B12, Vit D, B5 (for adrenals) iron, ferritin, magnesium, folate checked along with cortisol (using a saliva test) progesterone, DHEA & aldosterone tested.

    Hugs x

  • OMG! How babaric your treatment was. It sounds like something you would expect many years ago followed by being burned at the stake for being a witch! I'm so glad you are on the road to recovery. I feel that everyone should have a complete thyroid test done once diagnosed or even if you show symptoms. Good luck and I hope you can rebuild you ties to your family.

  • hi , So pleased things finally improving for you. Make sure you go to the GP with all the evidence, letters etc and battle to have all references to mental health removed from NHS records, not easy, it took me yeas of battling, with all the evidence. I found, with it still on my records, every time I was admitted to hospital, which is often , they looked at that My treatment with it on records indescribable. it should not make a difference but it does and how!

    Hope you will soon be fully recovered.

    Jackie

  • Hi there - having read your blog so much of what you are saying is true for me too - I do empathise so much !

    Having suffered many bouts of depression/anxiety periods including several stays in mental hospitals since my teen years (I'm now 58) - I have always thought that the diagnosis was not right !! - having been prescribed nearly all the anti depressants on the market (which incidentally always made me worse!) I was diagnosed with fibromyalgia in 2001 & hypothyroidism in 2005.

    It is only now 2013 that I requested myself to see a endocrinologist that I am being listened to!! - Why of why do doctors never really 'LISTEN' to what we are saying ????

    I think that most if the time we are the best judges of what our body is telling us !!

    Yes we don't always know why- but it is so important that we speak up for ourselves & dont put doctors on a pedestal & take their word as gospel !? (which is what I have done for so Many years !!!) - maybe this confidence comes with age and experience but we need to be able to question results & be a partner in our treatment.

    I've only just found this site and my eyes have been opened as to what happened to me has been the same for so many others.

    I do hope that now you are being listened to that the correct treatment will follow. Like me this is the beginning of a journey to hopefully better health & happiness.

    Best wishes

    Chris

  • If we were reading this from a book printed in 1913 then it still would have been shocking and disgraceful - but in 2013!!!!!!!!!!!!!!!!!!!!

    I am lost for words! xxxxxx

  • Oh My God! This is dreadful. Actually, though, not the first time I have heard this. When you are feeling better, with your permission, perhaps I'll contact Dr Chris Steele to see if he will discuss hyperthyroidism on This Morning next time.....

    You are such a brave woman and hopefully now will improve day by day. x

  • Yes you may, in fact I met him in the PrIory when a famous soap actress was there, he played piano with my daughter at the Priory. I am even willing to appear on the show when I am better. I have approached the Irish TImes also willing to tell my storey that lady journalists storey touched my heart. That could have been me! When I read the ill informed coroners report I was livid.

  • Hi just read this shocking post from a while back and was wondering if Dr Steele did ever discuss it on this morning?

  • Hi Pastille, No, I never heard anything from her and then other projects came along....

  • Dear Scarfred,

    Your experience sounds incredible and your courage is amazing. So many of us have had similar experiences and the journey to better health and well being is a long but ultimately a fruitful one. I wish you every luck in the future and will look out for your posts.

    Regards

    Lin

  • As someone has said you have to tell more people about this. To cruel. I wish you all the best in the future, I hope health and happiness finds you soon.

    Shell x

  • Scarfred and Marram, my heart breaks at your dreadful, dreadful treatment, the sheer barbarity of what you have endured is just atrocious.

    I had a sister who had a seeming psychotic episode following years of (untreated)depression meaning she could not even get out of bed some days and was sectioned, treated badly by the police, alas, though the same officers were completely pleasant to us, the relatives. Prejudice in operation.

    I can see now her photographs show the very face of hypothyroidism, all puffily distorted, and sparse, half eyebrows but the fixation was on sectioning and containment. Nobody put anything together. She died.

    My husband was severely hypothyroid to the degree ultimately, I believe still, of myxodoema madness and other forms of hell but GPs would not listen to us, we eventually went to Dr S but GPs would not treat him, then threw him out of the practice for going to Dr S. Marriage broke up as husband thought killing me would be a good idea, it must be me made him so ill, so made knives for the purpose in his well-equipped workshop. I married a good man but ended fleeing terrified into the winter night from him many years later. Just as well it was winter and dark, he could not find me. Oh dear, such memories. I still think his untreated thyroid problem was at root of his fearful violence which alternated with months long periods of total collapse.

    I hasten to add that my own experience of being hypothyroid is OK, owing to excellent endo investigation after years of neglect, and subsequent good treatment. Why did this not happen for my husband?

    When is anybody going to LISTEN, really LISTEN? How can what happened to both Scarfred and Marram even be allowed to happen in what is supposed to be an enlightend society?

  • "When is anybody going to LISTEN, really LISTEN? How can what happened to both Scarfred and Marram even be allowed to happen in what is supposed to be an enlightend society?"

    - Having been ill for 37 years with doctors resolutely refusing to do ANY tests apart from those that they KNOW have been done before and they KNOW wont' show anything I am genuinely beginning to believe that, for some reason I don't understand, the NHS and GPs actually want to keep us ill. I can think of no other reason why, in 37 years, I have been offered absolutely nothing. No tests, no treatment, no support.

    I have been shouted at, jeered at, abused and dismissed. Not once, ever, has a doctor even allowed me to tell them my symptoms. How on earth you can diagnose without listening to symptoms is totally beyond me.

  • Words cannot describe how diabolically the NHS have abused you. My heart goes out to you. But you are a strong lady. Well done you for keeping your sanity. Sincerely hope you find better health soon. Sending you hugs x

  • I totally agree with Snowstorm - tell as many 'important' people and organisations as you can what happened to you. We all need to do this to make sure no-one else experiences anything like this atrocity again.

  • My God - we think we have heard horror stories but never one as bad as this. How many times are people sectioned because of sanctimonious pretenders .... - I am lost for words.

    Your story definitely needs to be publicised - losing everything especially your freedom. The more people are aware the better. I can understand your horror of being sectioned again - of not being believed and forced to take drugs which wouldn't help you one little bit.

    All down to the medical profession not knowing one iota of clinical symptoms of thyroid gland problems.

    I hope you are able to recover your health fully.

    Regards

    There is a whole page on google re bipolar/thyroid - why do the medical profession not know the connection.

    google.co.uk/search?q=g&rlz...

  • That is appalling treatment! Because of the incompetence and arrogance of doctors you have lost so much; very nearly your own family and almost your life!

    I really don't know much about such matters but I'm wondering if there needs to be some sort of investigation into your treatment over the last 5 years and definitely some sort of compensation, although I'm sure that's not what's important. After all, it doesn't undo all the damage.

    I really don't trust doctors any more. After being told by a cardiologist, "we don't know why your heart beats so slowly and why it keeps stopping"... "It always starts again and it's been going on for years and you haven't dropped dead yet so we're discharging you", I have very little faith in the NHS.

    After being told by GPs "We don't know why your red blood cells are so large but I'm sure it's nothing to worry about" and reducing the size myself with B12, I'm not going to accept the "It's nothing to worry about" ever again. I shouldn't have had to diagnose my own B12 deficiency!

    After my mum lost the sight in her left eye 8 years ago, she was told it was probably a clot and that, as there didn't seem to be one in her eye any more, she would probably be fine. 6 years later she lost the hearing in her left ear. It turned out the cause was the same as the blindness - a massive brain tumour that had been there for at least 15 years and had spread extensively, wrapping itself around the brain stem and the interior carotid artery and various important nerves including the other optic nerve. She nearly lost her sight in that eye too. They couldn't remove it but they think they stopped it growing with radiotherapy. This treatment was at a different hospital and the specialist is trying to get all her previous records to find out why such an extensive tumour wasn't picked with the sight-loss. It seems the first hospital have not been very forthcoming with this information though!

    Some doctors are too arrogant. They are sure they know the answer, and they are so sure they are right, that they don't bother to check out other things. I don't know where this arrogance has come from and I don't know when these doctors stopped having the patients' best interests at heart, but it is quite worrying.

    I am so impressed that, despite how unwell you were, you stuck to your guns and got the tests that they should have been doing in the first place. Not only have you won this battle for yourself (if not the war quite yet), but you have helped others too by standing up to these people. You have also given me the courage to fight when I need to, and hopefully others too.

    I hope you are starting to feel better and are on the road to recovery now. Hopefully now you have turned a corner and started on a new path where things start going right for you and you can get your life back. I look forward to hearing from you again when you are feeling a little better.

    One thing that confuses me is why your TSH was 6 when you went in (unless this was from an old blood test) and then was <0.1 not long after. I don't understand this. Could the doctor have been lying? It's times like this when you wish liars' pants really did catch fire!!!

    Take care. I wish you a really speedy recovery.

    Carolyn x

  • Bless you!!! All my best wishes!!!!!!

  • Such a horror story and nightmare to live through. In this age of enlightenment, there are still many in the dark ages. The fact that you are alive to tell about it means you are very strong and a survivor. The saddest thing is losing your family. I know children can be very manipulated when they are under age but hopefully they will become sensible as they mature and see their mother as someone who is struggling against a terrible healthcare system and an enormously disloyal husband. I think things are going to be better for you going forward. Don't feel ashamed in any way, you have fought the deadly enemy....thyroid disease....very well.

  • j hope you realise how PROUD all of us that use this site and suffer [and those of us that have partners/family that suffer these conditions---because WE DO! ]really feel for you.......you deserve a platinum blue peter badge........i think that if you could ,somehow get your children and ex-husband to read through the horror stories that appear on this site----and some are almost as bad as yours---maybe they would come to understand more about it as all of us have and are doing that part of the problem is the medical proffesion....lasly have you ever thought of writing a book of your experiences......i'm sure there's enough there !!!!!!!..if you do i have one thing to say----see you at the oscars...lol

  • Oh Scarfred, what a nightmare you've been through. Here's hoping that after this horrific experience, those in charge of your medical care (ha! Care?) will be able to offer you the appropriate treatment. You've had absolutely horrible treatment thus far... Sending hugs! K.

  • DOES ANYONE KNOW A GOOD EDCIO IN HULL UK

  • Hi

    Drop me an email, I think I may have one - louise.warvill@thyroiduk.org

    Louise

    x

  • Hi Scarfed,

    To say I can empathise with you is an understatement I too nearly lost my life at the hands of cave man Doctors who misdiagnosed, mistreated and misunderstood my Hormonal illnesses.

    I spent five years (now actually 6) of my life in bed being treated as suffering from "bi-polar" I tried every psychotropic drug recommended in their spell book sorry their DSMV bible, all to no avail in fact they made me worse. I went from a bubbly, happy young women in the prime of her life (only turned 30 at the point of being misdiagnosed) who loved her career had an active social life and prided herself on keeping fit and had an a lovely size 10 figure. I put on 6 stone, could not stay awake, started to get such bad brain fog I could not read a book despite it being my favourite pass time. My depression was so bad I could not find the energy to wash or brush my teeth for weeks at a time and I had nightly drenching sweats, panic attacks, could not answer the phone or go outside. All these symptoms were a classic sign of manic depression according to my doctors so like a lamb to the slaughter just went along with anything they suggested. I even pleaded to be given E.C.T in desperation to get better. Then I moved house and changed Doctors and my boyfriend dragged me to see the young G.P who instead of just seeing me as a mental case decided my facial, feet and legs swelling could in fact be Thyroid related.

    A simple blood test uncovered Hashimotos disease and I started on Thyroxine,I asked to be referred to an Endo and they diagnosed PCOS, Insulin resitence, low cortisol and Vitamin D, and high levels of testosterone. I was an hormonal mess no wonder I felt as if

  • Sorry tapped send before I was finished!

    No wonder I Felt as if I was loosing my mind, my body was severely struggling. In the years under the mental health team I was never once offered blood tests to check for hormonal imbalances and it terrifies me to think where I would be now had I not changed doctors, probably in a padded room drugged up with Lithium! Although I am still too ill to work I at least know whats wrong with me and am trying to get a trial of T3 out of the NHS (blood out of a stone may be easier!) but will save to go private if I dont get it. I have lost a whopping 3 stone, now go out everyday and no longer suffer from panic attacks.

    I will never trust a Doctor again and feel very angry about the years I have lost to their incompetence. I was sorry to hear you have been through this too and many others have experienced such dangerous treatment at the hands of ignorant G.P's.

    I feel we all need compensation and it should be made public how dangerous the mislabelling of mental health problems can be.

    My heart goes out to you and hat off at your resilience and determination to get answers....good for you.

    Much Love

    Libby

    xxx

  • I meant to reply before to you Scarfred, Marram , Carolyn and now Libby. I have heard similar stories before, and it makes me SO angry that I may say something I will later regret.

    I used to have faith in doctors but now it seems they just deny you have any symptoms and always send for blood test confirmation - why do we visit the docs in the first place? Maybe I haven't found the right one yet.

    BUT the first thing on the Menu is Antidepressants (OK if you are depressed) but NO blood tests needed or any proof either, in my case it certainly stopped me going back, I knew it was NOT in my head, then when I did they wanted to give them me for insomnia and even my daughter to gain weight!

    The actual problem is missed, and it just gets worse, meanwhile you are led down a dark path to God knows where. I really worry about those who can't fight & find empowering information on the 'big bad web' for a start, I can only hope that attitudes are changing as people Question their 'care' and read actual heart-rendering accounts like these

    ((hugs)) Jane :D

  • So so sorry to hear how absolutely appallingly you have been treated. Words fail me but my heart goes out to you. It is a total disgrace-this is 2013 -one would think the condition hadn't been heard of. May all those involved hang their heads in shame.

    You have been so strong and brave -in the face of what you have had to face most people would have indeed had a mental breakdown casues by the sheer incompetance and cruel treatment..

    I hope that all these messages on this site to you show that everyone on here is behind you and supporting you on your road to better health.

    Big hugs xxx

  • Thank you so much for your honest and heart wrenching story.

    I identify SO MUCH.

    I wasn't sectioned but did spend a month on a psychiatric ward. I'd been arrested, assaulted by three custody officers. Three toes broken! The police surgeon insisted on my admission to hospital although they didn't want to take me. Once there, they refused me any investigation or treatment of my feet which were both black to the ankles by then. I was in constant conflict with the psych I had then during the whole month I was there.

    It seems to be a pattern for me. I have always had a problem with authority - I'll freely admit that - but I was also a senior NHS manager before I became too ill to work. I know BS when I hear it!

    I am a thorn in the side of my GPs. I'm generally well informed and know my rights and the senior partner hates it.

    Your strength is inspirational to me.

    Hope to communicate with you more later.

    Christine

  • Woa. I'm speechless but sorry to say not that surprised.

    Your T4... 54! :-O I can barely function when mine is 22...

    No wonder you weren't feeling yourself. I think most of us get the 'all in your head' card. How many relationship or marriage have a read about which has ended due to thyroid... I say keep strong, you are twice as strong as the ones who walked out on you and even stronger again for it.

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