How did I get here?

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.

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8 comments on “How did I get here?

  1. Clutter says:

    My NHS surgery went very well, although the surgeon didn’t believe my symptoms (spiralling hypothyroidism & hyperthyroidism) and 13kg weight loss were all due to thyroiditis.

    The lobectomy showed Hurthle Cell Carcinoma so completion thyroidectomy followed 3 months later & I was started on 200mcg of Levothyroxine. I felt extremely unwell & felt better when I stopped T⁴ and took T³ x 60mmcg 2weeks prior to RAI.

    Post RAI I resumed T⁴ & felt very ill again, hardly leaving my bed. 6 months later I stopped T⁴ & went on T³ prior to RAI WBS. Again I felt better.

    Every 3 months T⁴ was reduced by 25mcg until I was on 100mcg. Wild heart racing, palpitations & diarrhoea decreased on the lower dose but fatigue, brain fog, concentration & shortness of breath are worse and, I’ve ‘gained’ Fibromyalgia & COPD and my weight is now 50kg, less than when I first saw an endo a year ago.

    My endo (another T⁴ monotherapy fascist) wants my dosage maintained despite FT³ dropping below range & I can’t have rT³ tested on NHS.

    As you know, I’m now self medicating with T³ in addition to reduced T⁴ and feel better for it, although very far from well & still spend most of my time in bed.

    Thanks to people like you posting about their struggle to get a diagnosis and appropriate treatment I WILL get T³ or NDT outwith the NHS if necessary and shan’t spend years chronically sick.

    ps Why don’t you link the Scottish Parliament meeting to this blog?

  2. Clutter says:

    My NHS surgery went very well, although the surgeon didn’t believe my symptoms (spiralling hypothyroidism & hyperthyroidism) and 13kg weight loss were all due to thyroiditis.

    The lobectomy showed Hurthle Cell Carcinoma so completion thyroidectomy followed 3 months later & I was started on 200mcg of Levothyroxine. I felt extremely unwell & felt better when I stopped T⁴ and took T³ x 60mmcg 2weeks prior to RAI.

    Post RAI I resumed T⁴ & felt very ill again, hardly leaving my bed. 6 months later I stopped T⁴ & went on T³ prior to RAI WBS. Again I felt better.

    Every 3 months T⁴ was reduced by 25mcg until I was on 100mcg. Wild heart racing, palpitations & diarrhoea decreased on the lower dose but fatigue, brain fog, concentration & shortness of breath are worse and, I’ve ‘gained’ Fibromyalgia & COPD and my weight is now 50kg, less than when I first saw an endo a year ago.

    My endo (another T⁴ monotherapy fascist) wants my dosage maintained despite FT³ dropping below range & I can’t have rT³ tested on NHS.

    As you know, I’m now self medicating with T³ in addition to reduced T⁴ and feel better for it, although very far from well & still spend most of my time in bed.

    Thanks to people like you posting about their struggle to get a diagnosis and appropriate treatment I WILL get T³ or NDT outwith the NHS if necessary and shan’t spend years chronically sick.

    • Thanks for sharing your horror story too Clutter. Something is very wrong here with how this disease is treated. Until the doctors stop relying on a pituitary marker (TSH) and refuse to test the active T3, we will never get out the bit. I was just as bed bound and in truth the best thing I ever did was stop the levo as it was making me toxic. I wonder if you would feel better with just T3 only if you are not converting it?

      • Clutter says:

        Yep, I was thinking as much this morning. I’ve enough T³ to see me through a couple of months & will order some from Cyprus if it works for me.

        My mother & sister both had Graves. Sis eventually had to have RAI as she developed mild TED. She’s doing ok on T⁴ thankfully & her GP has told her to tweak her dose to suit how she FEELS 🙂

  3. Reblogged this on unifiedserenity and commented:
    I lost my thyroid function in 1992, and I have never felt right. I quit trusting the doctors and now self treat. I don’t feel great, but I don’t feel any worse than I did taking levothyroxin or synthroid. NONE OF THE DOCTORS would prescribe Armour thyroid. I can’t buy it in America without a prescription, so I take Thyroid-S. I wish I felt like I did prior to having my first child, but I’ve given up on that, and just want to not be tired. Some days are better than others, but I am always in pain of some kind, and I watch everything I eat. I am fully convinced that millions of women are suffering with T3 problems and the doctors don’t give a damn and just want to say it’s in our heads.

    • You are spot on Christina, millions of women, written off as suffering from somatoform. It’s the biggest untold medical scandal of the 21st century and I will not give up until it’s exposed, punished and resolved. How crass that ‘it’s your hormones’ has become a trite put down of women’s essential health? Damn right it’s hormones. Hormones which need replacing with bio identical hormones, not synthetics the body has trouble recognising or antidepressants which are never going to solve the deficiency. You can only wonder if there is some sort of population control going on. The answer to thyroid treatment has been known a very long time yet so many are written off as ‘hormonal’ and medicated.

      • It’s life changing! I was a star athlete in high school and college. I was always energetic, and then I got pregnant and nearly died from no thyroid function. I knew I was in serious trouble when I could no longer brush my teeth because my arms would not move! I knew I either had MS or was hypothyroid, and when I got tested, they said my pineal gland was function at 10,000 times normal to try to get my thyroid to work and I almost burnt it out. I don’t know if that was an exaggeration on the part of the doctor, but I got put on synthroid for a decade, then moved to levothyroxin and no matter how much I told the doctor I was not feeling right, had zero energy, was constantly tired, hungry, and aching all over they said it was NOT my thyroid because my blood work was in the normal range.

        Thyroid – S is supposed to give me t3, but I still don’t feel it, and I want to try armour because I have heard great stuff about it. I emailed you to find out how I can get it without a prescription.

        I am desperate to get my life back after 2 decades!

        Thanks!

  4. It’s just shameful how this massively common disease is ‘treated’ by the medical community. Shameful. I have wracked my brains for reasons why but keep coming back to the same thing – a way to keep women down. I know men suffer this too and am sorry if i sound like I am sidelining their experiences. I don’t intend to. It’s just that the vast majority of sufferers are women and so the politics of the illness concern me more there. I have emailed you.

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