My letter for the Petitions Committee.

 

After my only child was born in 2004, I became very ill and extremely thin, anxious and sore. I had trouble swallowing and developed a large goitre on my throat. Several doctors dismissed these symptoms as anxiety (!) and health visitors explained away the massive weight loss as the wonders of breast feeding. Finally my regular GP sent me to an endocrinologist as he suspected hyperthyroidism. The endocrinologist confirmed Graves disease with TSH, T4 and T3 blood tests. He told me he had run antibody tests then later denied this. I was fine on the carbimazole medication issued for a year but when taken off these I relapsed and was advised surgery to remove the thyroid was the best option.
 
I had the surgery in 2006, a subtotal thyroidectomy. This means a portion of the thyroid is removed, with the aim that the piece remaining will function normally and alleviate the need for thyroid medications. Looking back with the knowledge I now have, I fail to see the logic in this. If I truly have Graves disease, this is an auto immune disorder, where the immune system attacks the thyroid gland. There is nothing wrong with the gland per se. If some thyroid remains, it means the auto immune attack will always have somewhere for target practice. And so it came to pass, seven years later I still suffer random auto immune flare ups and it is hellish. 
 
I awoke from surgery and knew instinctively all was not well. My concerns were brushed off and finally a physiotherapist was sent to teach me how to breath! I knew the neck drains remaining stubbornly empty whilst my neck grew fatter was a problem. I couldn’t breath very well and no doctor came. Finally almost 20 hours after the operation I rang my husband to come and take me away to another hospital as I felt sure I would die of suffocation. Before he could arrive, a passing nurse saw the urgency of the situation and cut my neck wound open. The doctor was paged from another hospital and arrived to find me losing consciousness. He put his hand in my open neck wound and removed hematomas while i was awake in the bedroom, there was panic and blood everywhere. My husband arrived and asked if I was dying, no one answered. I spoke and blood shot out my throat. The whole scene was surreal. I was told to close my eyes as I felt so cold and sleepy but I knew if I did I would not survive. They rushed me down to theatre for emergency surgery to repair the bleed, telling my husband it would take an hour at most. Five hours later he still knew nothing and believed me dead. Finally seven hours later I came round from surgery and was plunged in to tetany attacks from the accidental destruction of my parathyroid glands. This meant intravenous calcium for hours and then days to stabalise me, with life long calcium and vitamin D supplements. Still I was alive. I resolved to put the whole hideous experience behind me and move on with my life.

 

Looking back, that was the easy bit. The next seven years were hell on earth. I became hypothyroid very quickly so the remaining portion of thyroid served no useful purpose and pumped out no thyroid hormones. I did ok on levothyroxine for about six months and then the symptoms began to creep up – extreme fatigue, joint and muscle pain, hair loss, low body temperature, palpitations, weight gain, insomnia, tinnitus. I could go on but I’d never stop, there were so many symptoms i simply felt like an old, old lady at the age of 40. My GP was at a loss and the endocrinologist just repeated his mantra, “your bloods are normal.” I was referred to a Rheumatologist who diagnosed Fibromyalgia without getting off his chair or taking bloods or even touching me. The ‘treatment’ was to pace myself and take ever increasing doses of Tramadol, an opiate and anti depressants for pain. The visits to cardiologists for tachycardia and ectopic heart beats drew a blank and I was given beta blockers for the ‘unexplained symptoms’. The GP gave me Proton Pump Inhibitors for acid reflux. After several years I had two carrier bags per month of medications – sleeping pills, beta blockers, opiates, anti depressants, Proton Pump Inhibitors, Non Steroid Anti Inflammatories, Levothyroxine, Adcal, Alfacalcidol, Inhalers, codeine, ear steroids and laxatives were just some
 
I think the turning point for me was when the GP told me my cholesterol was high, blood pressure high and I was obese. She kindly suggested I apply for disability benefit as I was having such trouble walking. I wept in her office from sheer frustration. I knew that despite the ‘bloods are normal’ mantra this was thyroid related. It doesn’t take a genius to connect the dots. I had great health my whole life until the post pregnancy auto immune attack. The thyroid was removed and the problems all started then. It had to be connected to the thyroid levels. My endocrinologist was no help whatsoever and I really have to stress this point. The committee frequently focus on how patients have trouble getting referred to an endocrinologist and I have to say I saw one right the way through my treatment for nine years and it did not help! If an endo is as focused on TSH/T4 testing as GPs are, he will not look to see what is behind your problems and decree them not thyroid related, as mine did, repeatedly. I was labelled anxious and sent for cognitive behaviour therapy! You bet I was anxious. I was anxious every time I took a levothyroxine and suffered tachycardia and chest pain within the hour. How can it be right that there is one medication for such a complex illness? I was never offered T3 and refused it when I asked for it. I had to push for T3 testing and insist on it as I was paying. It showed I was deficient and not converting the Levothyroxine.
 

I realised after five years of this ever worsening health that the endocrinologist would not help me. The repeated trips to A&E with chest pain were making my son anxious and putting a strain on my marriage. I had been ill all but two years of married life. That my husband honoured his marriage vows is a source of astonishment to me because I was in no way similar to the woman he married. There was no quality to life, I slept eighteen hours a day from sheer exhaustion and could barely walk. I resolved to end my life and made the necessary plans. My husband was desperate and found Thyroid UK and begged me to look again at finding answers. This was the turning point. Finding others with the same symptoms and same ‘your bloods are normal’ diagnosis was a revelation. I saw a Doctor who treated my symptoms and not the lab results. I take NDT and have never looked back. Gone was the fatigue, obesity, high cholesterol, high blood pressure, baldness, tinnitus and insomnia. I needed the T3 that NDT contains and it was that simple. Years of my life were ruined for no good reason. The trauma of the botched surgery and loss of parathyroid glands was as nothing compared to the next six years on levothyroxine. I still have an auto- immune disease, the surgery doesn’t cure that. I went in to hospital with Graves disease and came out a week later with hypothyroidism, hypoparathyroidism (loss of parathyroid glands) and still suffering Graves disease. It’s not an easy illness to manage, particularly as I am still subjected to auto immune attacks on the residual thyroid but being on the correct medication makes it much simpler. The problem is, my GP is not allowed to prescribe the NDT I need and I import it from America. The FDA in the USA are closing down online pharmacies that sell without prescriptions and when they do I will have no way of sourcing this life saving medicine. That was my main reason initially for petitioning the Parliament. I don’t know where I will turn when that happens.
 
How can it be right that medical experts removed my thyroid gland with the assurance they would replace all the hormones a healthy gland made and yet leave me in this state? They failed to replace all the thyroid hormones in my case and I have the lab reports to prove it. Yet, as is clear from previous petition meetings, there is a byzantine complexity to the health care structure in this country with accountability almost impossible to establish.
 
Thank you for taking the time to read this. It is greatly appreciated.

 

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5 comments on “My letter for the Petitions Committee.

  1. Hi Lorraine, I am so sorry you have gone through such an ordeal, but glad you found light at end of tunnel. My mother was v. ill last year for several months with acute thyroiditis, she turned into skin and bone almost overnight, bedridden, her levels were sky high, it was grim, v frightening for her and all of us, but once they realised what was going on, she got the correct meds – and thankfully did not need surgery. Her care was excellent though. I am appalled at what you have had to endure! So glad you have found a drug that can help, utterly vexing you can’t get it here.

  2. Thanks Nasim and I am so pleased your mother is over the worst. It really is a lesson in hubris for me as I grew up wedded to the common misconception that thyroid disease was a minor health irritation. The NDT I buy from America is only £12 for a months supply. Contrast that with the £200 per month cost of the useless medications I was on previously and it’s clear there is something else at play here. Not to mention the many visits to specialists and numerous scans.

    The NHS is sick while Pharma rules the roost.

  3. PC says:

    I am so sorry you have had to go through this – why do GPs Consultants etc not actually stop being consumed by their own thoughts that they are afraid to see what is happening to the patient who actually knows what’s wrong? I have been going backwards and forwards to hospitals for a huge range of tests – numb or tingling feet and hands, palpitations, chronic fatigue – then in 2014 i had such awful pain in the outside of my hip – was told i had bursitis – then over the next couple of weeks, pain literally exploded throughout my body – was given tramadol which doesn’t work. kept going back – got so fed up with rudeness from GPs – made to feel a fool and a fraud – was told i had fibromyalgia – gp printed off 4 page document told me i had to learn to live with it! So i changed surgeries. New gp put me on Oxycontin – doesn’t help – but ordered bloods which showed my TSH was 7.74 – as you already know the base line ‘norm’ is 0.22 – 0.33. Also referred me to pain clinic for CBT! So i went home to google hypothyroidism, – found a fantastic article by the late Dr John Lowe who said 99% of fibromyalgia is mis-diagnosed hypothyroid.Took the article to new GP surgery. Woke in such pain during the night – pain just everywhere and unable to stop crying because of it. in the morning i phoned surgery – gp phoned me back – told me there was nothing he could do about it and when I asked if he had read the article shouted that he was far too busy – that i was only 1:4000 patients and slammed the phone down. i have every single symptom of hypothyroidism – but might as well be banging my head off the wall! Am in despair when i have to go to bed because of the pain when i lay down. Im so tired and very tearful because of sheer frustration and am full of anger at being left like this.

  4. Ros says:

    Thank God my doctor knew to do a reverse T3 test. I now take T3 only medication and am almost “normal”! It took many, many years though. Thank you so much for sharing your story.

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