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Fighting Back – We Deserve Change

Fighting Back - We Deserve to Be HeardLorraine 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.

Thyroid-Nation-Izabella-Wentz-AdAnd 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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    • I have no idea, Karen. Very frustrating, indeed. I actually suffered for a year on a T4 only med and had to research about WHY I was getting worse. I found a new doctor and was put on Nature-throid. I’m better, but not great, by a long shot. I’m dealing with Adrenal Fatigue issues now. 🙂

  2. Pingback: A Letter To Share- My Unwanted Affair With Mr. Hashimoto

  3. Vicky Glover-Ward on

    The ignorance of your symptoms by the medical profession so mirrors my own; for years I visited my doctors complaining of symptoms. These steadily worsened until I had 4 years of hell: 7 day hormonal migraines every 14 days, so cold that I would be in a jacket rated for use in -7 deg C conditions with two hot water bottles underneath it, covered in blankets in front of a roaring fire thinking I would die from the cold, steady weight gain of 1-2 lbs per month despite sub 1500 calorie a day diet and sleeping 12-15 hours per day and waking up exhausted. Heart palpitations in the middle of the night, hair falling out in handfuls and no eyebrows. Basically just feeling so terrible I thought I would die.

    Luckily in 2013 I summoned up enough energy to move GPs as being called an alcoholic in denial (I wasn’t actually drinking anything but my liver enzymes became abnormal due to lack of treatment) after being told that I was a menopausal hypochondriac who secretly comfort ate and caused all her own symptoms because of my weight finally made me realise that I wasn’t going to get anywhere.

    My new GP diagnosed me from my symptoms in under 3 minutes after asking whether there was any family history of hypothyroidism in the family (yes going back through my maternal line including goitres, something that I’d consistently pointed out to my previous GPs). Luckily he diagnosed me on symptoms alone because my TSH is in the allegedly ‘normal’ range.

    Levo made me feel better but I still had symptoms. Last Sept I started on NDT. It’s a bl**dy miracle worker. The British Thyroid Association are misguided and need to be stopped as they are causing an epidemic of illness due to their misguided beliefs.

    • lorraine cleaver on

      Vicky I am so glad you are now on NDT and you’re right, the British Thyroid Association (and their lackeys, the British Thyroid Foundation) do need to be stopped. I am now about to take them to court! I may not win but that won’t stop me trying.

  4. i too have been battling for over 6 yrs i have gone from 9 stone to 15 stone , accused of binge eating, i ache my joints my muscles i am always cold ,i have A/F but my TSH comes back normal and my doctor for many months has refused point blank to do T3 and T4 so last week i have paid for it to be done , i cannot go on like this i have no life , i cannot stay awake i hurt all over , i am lost as what to do next

    • Judy I hope you have found support and advice. If not, join Healthunlocked From there you will find information from members and support too and might, finally, recover your health.

      If you have or can get a copy of your latest blood test results from the doctor, with ranges post them too. If you have not had a recent one. This is now the recommended way. Get the earliest appointment, and fast. Don’t take any thyroid hormones (levo) for around 24 hours before the test and take it afterwards. Ask for TSH, T4, T3, Free T3, Free T4, B12, Vit D, iron, ferritin and folate to be done too. Post a.s.a.p for advice.

  5. Thank you for posting this Lorraine. I too have no thyroid and am better on Naturthroid. I also lost my parathyroid glands, do you take anything for loss of parathyroids?

  6. – You had your thyroid removed surgically….and only later lost your parathyroid glands? I too have been riding the ‘thyroid train’ for 30 years and would love to get off at your station…..but this apparent inconsistency seems to flag up the whole story as another disappointing pseudo-case. – And yes, cynicism is a symptom of my non-thyroid experience/condition – and no I cannot find a single instance where thyroid removal can leave the parathyroids to be lost ‘later’. Please clear this matter up, so that this article holds together better than just another wild goose chase…please

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