Fighting Back - We Deserve to Be Heard
Lorraine Cleaver, Thyroid Thrivers
Thyroid Nation

47 years old
Scotland, UK
Graves’, Thyroidectomy

To this day, I can’t reconcile that naive, trusting person I was, who took him at his word, with the person I used to be and the person I am again.

I’m a 47 year old wife and mother from Scotland in the United Kingdom. I have no thyroid and an almighty battle on my hands and here is my story.

Shortly after my only child was born ten years ago, I became incredibly thin, very quickly. Despite pleas for help, health visitors assured me it was one of the wonderful benefits of breast feeding! I was anxious and hot, with difficulty sleeping due to the lump in my throat. Antidepressants were offered of course which I refused, not being depressed. I struggled to cope with my baby as the fatigue was overwhelming, not to mention the fear from my rapid heart beat and palpitations. It took almost a year for a diagnosis of Graves disease to be made, based on my symptoms and a raised T3 and lowish TSH thyroid test. There was blessed relief when I was prescribed Carbimazole and my thyroid settled down again.

Unfortunately, after a year on this medication, my endocrinologist recommended I have the thyroid removed. His reasoning was that my eyes could become affected with Graves eye disease in the future and that it wasn’t good to remain on the Carbimazole too long. To this day, I can’t reconcile that naive, trusting person I was, who took him at his word, with the person I used to be and the person I am again. I went ahead with the surgery against my better instincts and almost never lived to regret it. I suffered a hematoma within twenty four hours of the operation and was being suffocated. No one believed me or came to help. I was in the corridor, struggling to breath and panic stricken when a passing medic saw the urgency and used a scalpel to relieve the pressure on my wind pipe. My husband arrived to a blood bath – the surgeon had his hand in my gaping neck wound, removing the hematoma, with each word I spoke, blood gushing out of my throat. I asked if I was dying, no answer. My husband asked, still no answer. You really do see your life flash before you. I endured an eight hour emergency surgery to repair the bleed and lost my parathyroid glands in the process.

It was hellish, the whole ordeal, something you would not wish on your worst enemy. But the real trauma was yet to come. The years of Levothyroxine, being dismissed as an anxious patient when the symptoms of hypothyroidism didn’t disappear despite ‘normal’ labs. Oh those ‘normal’ lab test ranges! I suffered crippling, bone crushing fatigue, tiredness like no other. Joint and muscle pain. Obesity despite a healthy diet. Tachycardia. High Blood Pressure. Headaches that lasted months. My hair fell out, so much so that I took to wearing a wig. Palpitations and ectopic beats, so frightening I was convinced I was going to drop dead. Endless trips to Accident and Emergency (Trauma to my American friends) where, despite heart rate going off the scale, no cause could be found. Tetany (seizure) attacks so bad my entire body folded up on itself. Tinnitus that drove me to the brink. Insomnia. Acid Reflux. Low body temperature bad enough to warrant sleeping in a sleeping bag under three duvets whilst fully dressed. After two years of this, a fibromyalgia diagnosis was offered. That took my daily prescription medicines total to eighteen! I was now taking Levothyroxine, Beta-Blockers, Sleeping pills, Antidepressants, NSAIDs, Proton Pump Inhibitors, Steroids, Inhalers, Tramadol, laxatives, suppositories and more but becoming sicker than ever.

Finally, desperately I resolved to end my life. I had put my husband and son through enough, it seemed the only way out of this non life. The night I discussed this with my husband still brings me to tears, thinking of how he was unable to provide me with the hope we both knew was gone. It’s not that he didn’t want to plead with me to live, it was just too heartbreakingly obvious to both of us that this was not living.

And yet, here I am! The Endocrinologist had always warned me not to research my condition, saying there was so much rubbish on the internet and that he knew best how to treat my condition. Suddenly I figured I had nothing to lose, if I found no help, I would go through with my plan to die. And the internet was a revelation! I found Thyroid UK support forum first and will be eternally grateful to them for patiently guiding me through the complexities of Thyroid testing. Discovering that ‘normal’ labs means nothing of the sort, I ordered a Free T3 thyroid test and was astounded to find I had none! I was not converting the Levothyroxine to the active T3. I sacked the so called Expert Endo and saw a wonderful doctor, the late Dr Skinner. I began taking NDT and never looked back. All symptoms gone. Health restored.

But angry like you wouldn’t believe!

So much so, I petitioned the Government in Scotland for better thyroid testing and diagnosis in December 2012. There has been wonderful support from world class doctors and Thyroid groups everywhere. At the moment, there is consideration being given to an internal review and a listening exercise to hear patient’s views on their treatment. This is long overdue. The situation in Scotland is worse than almost anywhere else I’ve examined. Endocrinologists dismiss us routinely and refuse to prescribe NDT, or even test T3. But patients are fighting back. I am forever in the debt of online thyroid advocates, without whom, I wouldn’t be here. My son wouldn’t have his mother, my husband his wife. Thank you each and every one. Keep pushing. We deserve change and we can make it happen.

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