Like so many of us, my thyroid journey has been anything but plain sailing. I have previously documented the traumatic experience I had when surgeons removed my thyroid for Graves’ disease. I had post-surgical hematoma, emergency evacuation of hematoma (awake without pain relief), second repair surgery and the loss of my parathyroid glands.
Isn’t it odd that 21st century medicine treats a disease by removing an organ which is not diseased? My immune system was faulty, not my thyroid. Leaving hospital weeks later with Graves’ disease, hypothyroidism and hypoparathyroidism didn’t strike me as a successful outcome. I was delighted to be alive after the trauma, of course, but nothing could have prepared me for the attitude of endocrinologists and other doctors to the hypothyroid patient, at least in the UK where I live.
"It struck me as utterly wrong that doctors could remove an organ with the assurance they would replace all the hormones my body could no longer make and then spectacularly fail to do so!"
I can honestly say I gave levothyroxine (a T4-only medication) my best shot. For six years I took it religiously all the while buying the hoary old "your bloods are normal" line that my endocrinologist charged outrageously to spout. The myriad symptoms were “not thyroid related” and despite my deep conviction those doctors were wrong, the diagnosis of fibromyalgia was taken on board.
By year six, now on eighteen daily medications for myriad unresolved symptoms and terribly ill, I was ready to end my life.
There was nowhere to turn, or so I thought. Endocrinologists refused to accept that the obesity, tachycardia, hypertension, high cholesterol, chronic utter fatigue, and hair loss were at all connected to my absent thyroid. I knew instinctively they were wrong and I curse each day that I didn’t act on those instincts.
Finding online thyroid advocate groups, like Thyroid UK, saved my life. Through them, I found (the now late) Dr. Skinner and began to take natural desiccated thyroid which allowed me to regain my health within months. Because my GP refused to prescribe NDT, I worried for the future. If Dr. Skinner retired or died, who would prescribe my medication? It struck me as utterly wrong that doctors could remove an organ with the assurance that they would replace all the hormones my body could no longer make and then spectacularly fail to do so!
I had never been able to convert the levothyroxine to active T3 and this was only discovered when I insisted upon and paid for tests that showed this to be true. Mind you, in the UK, we pay taxes so that we may enjoy full healthcare provided by the National Health Service (NHS). The one and only medicine (levothyroxine) that my doctors offered me for six years did not work and they refused to prescribe the one that did.
I was furious. Sick, tired, furious and with a real need to do something, anything, to change this state of affairs.
That something was to submit a petition to the Scottish Parliament. Although there was only one signature needed to officially submit, I joined forces with two other women who were also angry at the level of care they had received for thyroid disease. They have since resigned and I am now the sole petitioner. The ball started rolling in December 2012 and since then there have been many meetings at the parliament to discuss the way forward.
“UK guidelines for the use of Thyroid Function Tests published in 2006 were based on a non-systematic review of generally poor quality evidence from United States National Academy of Clinical Biochemistry...”
The petitions committee were incredibly shocked at our experiences and those of the many thousands of you who have written to them. I have the support of a Member of the Scottish Parliament, Elaine Smith, herself a hypothyroid sufferer. She is particularly angry that in Scotland, indeed the UK as a whole, there is only one manufacturer and supplier of liothyronine, or T3 medication, and there are regular shortages of this life-saving drug. The price is also an issue, here it is fifty times more expensive than the rest of Europe. We have had a meeting with leading endocrinologists and the Cabinet Secretary for Health.
Right now, the Scottish Government intends to conduct a listening exercise for thyroid sufferers, to establish what the shortcomings are in care. The committee themselves commissioned a scoping exercise which last month reported back that “UK guidelines for the use of Thyroid Function Tests published in 2006 were based on a non-systematic review of generally poor quality evidence from United States National Academy of Clinical Biochemistry (now archived).”
I could take the above report apart but, suffice to say, the quote above sums it up for me. Here in the UK, patients are routinely offered nothing more than the TSH test when being treated for hypothyroidism, a test based on poor quality evidence!
"What can we do but fight on? As Churchill famously said, 'When you’re going through hell, just keep going.'"
There really should be nothing more to argue, but as ever in the world of thyroid patients, we must continue to fight for every scrap of progress or change. There are problems with diagnosis, problems with conversion of Levothyroxine (T4-only medication), shortages of Liothyronine, inability to access NDT, refusal to accept adrenal fatigue as a real issue for so many of us, difficulty getting a referral to an endocrinologist and for the “lucky” ones among us who do, problems convincing them once there, that these symptoms are indeed thyroid related.
What can we do but fight on? As Churchill famously said, “When you’re going through hell, just keep going.” That’s good advice.
Thyroid advocates like ThyroidChange are particularly making a difference and their support of my petition has been incredibly helpful. Because of the detailed evidence sent by ThyroidChange, the committee were astonished at the scale of the problem in the USA.
While I wait on the committee’s next move, I am pushing from many angles; I'm scheduled to speak soon at family doctor conferences in Spain and Italy with others to follow. Bit by bit, anyone can effect change but we are most effective when we join together and share our experiences and knowledge. I wouldn’t be here without the good folk who shared their experiences and advice with me.
Sadly, Dr Skinner did die, and in his honour I will not stop until the battle is won.