Following the birth of my only child nine years ago, I became very ill and extremely thin and was diagnosed with Graves disease. The treatment prescribed was anti thyroid therapy, Carbimazole, and it worked. Gone were the sweats, palpitations, weight loss, extreme hunger, agitation and insomnia. Life was good. Until. Well, until a year later I underwent a sub-total thyroidectomy on the advice of my endocrinologist. I was told this would lessen the chance of suffering the awful, bulging, staring eyes of TED, thyroid eye disease. I went ahead though it’s the biggest regret of my life and here is why.
I came round from surgery, unable to breath comfortably. No doctor came. The neck drains remained stubbornly empty and my neck grew larger. A physio came and told me the problem was I was simply not breathing correctly. I requested a doctor again, was brushed off. Finally twelve hours later, in great distress, I called my husband and begged him to come and take me to another hospital. Before he arrived, the emergency finally hit home to the nursing staff and I had my neck cut open right there in the room, the hematoma pulled from it’s parlous position on my windpipe. My husband walked in to my bedroom to find me covered in blood and beginning to lose consciousness. He was assured emergency surgery to repair the bleed would be quick, an hour at most. Five hours later he was convinced I was dead.
Shellshocked, I comforted myself that I would turn a corner now. The loss of my parathyroid glands during that second surgery were explained as possibly temporary, the tetany attack a minor blip. I had intravenous calcium for hours to stabalise me and finally returned home four days later.
That was traumatic, no getting away from it. Mentally, you climb a mountain to get over having come so close to death. I had a little boy, what if I had died? Would he remember me? I put my best foot forward and took the little while pills my endo assured me would replace the thyroid hormones my body could no longer make. And then the real misery began.
Six years of total and utter hell. Palpitations, ectopic beats, insomnia, muscle aches, acid reflux, hair loss, tinnitus, crippling fatigue, panic attacks, chest pain – you name it, I suffered it. I felt like eighty years old. The endo’s refrain to all these complaints was “It’s not thyroid related, your bloods are normal.” I trusted him, why wouldn’t I? He is the endocrine expert after all. I saw another doctor who diagnosed Fibromyalgia. No tests were done, he didn’t examine me or even get off his chair but said it was common in thyroid patients. So the medications began to mount up. Beta blockers, Anti-depressants, Tramadol, Sleeping pills, NSAIDs, Protein Pump Inhibitors, Inhalers and so on.
They didn’t work. I became obese, developed high blood pressure, high cholesterol and slept twenty hours a day. I was tested for MS, Myasthenia Gravis, Diabetes, saw numerous cardiologists (one advised me to drink less tea!) and clogged up the GPs surgery more than was decent. Things couldn’t continue like this, it was an existence not a life. I planned my suicide and told my husband why I had to do it. There was no depression, I was purely and simply unwilling to tolerate the situation any longer, the effect my health was having on our son was horrible. He saw me carted off to A&E with chest pain/tachycardia on too regular a basis.
So why am I here? We had one last push for answers and found a charity called Thyroid UK. I learned from their website that ‘your bloods are normal’ is not quite true for all. I wasn’t converting the little white levothyroxine pills in to the active hormone my body needs, T3. No wonder I was so ill! T3 affects all cells of the body and I had barely any. I started taking Natural Desiccated pig thyroid hormone and regained my health, slowly but surely. Hair grew back, cholesterol and blood pressure normalised, weight came off, energy returned and I feel alive again.
There are still issues to resolve thanks to six years on a medication making me toxic. I had b12 and iron deficiency thanks to the protein pump inhibitors removing all stomach acid. These deficiencies caused damage to my spine that cannot be undone. I would love to add up what an under treated thyroid patient costs the NHS. My treatment was mostly private but I still had the same poor quality of care from my endocrinologist that his NHS patients would receive, a total reliance on TSH blood tests while ignoring the clinical signs and symptoms of clear hypothyroidism.
Untreated hypothyroidism can and does lead to heart disease, diabetes and COPD. The NHS will never get value for money or quality of care while this disease management model continues. Who is going to rise to the challenge? I petitioned the Scottish Parliament with two other Scots women and we are getting somewhere slowly but this is a world wide problem. People are dying of this utterly treatable disease at a cost of billions to the State. Platitudes of patient centered care just don’t cut it. Thyroid patients know exactly what is needed yet are roundly dismissed. Well not any more.