There are certain people who inspire me every day to continue writing Hypothyroid Mom. Lorraine Cleaver of the Thyroid Petition Scotland is one of them. She is a woman fighting for change for thyroid patients across the globe. I am honored to know her and call her friend.
Written by Lorraine Cleaver, Thyroid Petition Scotland
After a lifetime of great health, I embarked on pregnancy with no apprehension aged 36. I was happily married and feeling so positive about my first baby’s arrival.
A few midwife check-ups revealed a low iron count but I was told I could take some iron tablets “if I wanted to” and with such a casual approach that I gathered this was no biggy. I did supplement for a few weeks however, when I told the midwife I suffered with terrible constipation and stomach pains on this, she said not to worry, my iron wasn’t too low. So, wracking my brains, this was the only red flag I can come up with in an otherwise stress free pregnancy. I had a non remarkable delivery, epidural and forceps and a bouncing 7lb 4 oz boy. I took my son home excited about the future as a new mum. I didn’t have to return to work and money was not a pressure so we had the world at our feet and all we had to do was enjoy it.
The reality was starkly different.
Within days of the birth, I weighed less than I ever have in my life, 7 stone, about 44 kilos. I was reassured by the health visitor that this was the wonderful side effect of breast feeding. As the weeks rolled on, further weight fell off, despite an enormous appetite. By the time my son was nine months old, I weighed less than 6 stone, 38 kilos. I was gaunt, anxious and near hysterical with fear, dreading cancer or some other devastating illness.
There were dark intrusive thoughts of death, not of killing myself or harming my baby, but fatalistic doom laden images of death and falling down stairs. I felt I had no control over anything. If my body was doing this to me, what say did I have in anything that really mattered? How could I keep this little boy alive when I couldn’t even keep weight on myself?
The exhaustion was crippling and yet sleep wouldn’t come. I was running on empty, doing everything at one hundred miles an hour, with palpitations and bulging eyes to prove it. Finally a year after my child’s birth I was diagnosed with Graves disease. Hooray! This madness had a cause. I would get well. The carbimazole worked a treat and I did indeed feel fantastic again within weeks. The nightmare was going to end.
Or so I thought.
A year later my endocrinologist told me I should have my thyroid removed to prevent any damage to my eyes. He said the body can cope fine without a thyroid and that he would replace the hormones my gland could no longer produce with one little pill a day, Levothyroxine. I trusted him and felt it would be churlish to refuse an operation that could prevent damage to my sight. I went ahead and have not stopped regretting it since.
I’ve spoken at length before about the trauma I endured having this operation – post op hematoma, emergency tracheostomy without pain relief, second surgery and loss of parathyroid glands. Still, over seven years later, I struggle to relate to the person I was then, naive and obedient.
Why did I go ahead and let doctors remove a gland that was in fact not diseased?
My immune system was faulty, not my thyroid!
Why didn’t I research and question this?
All I can come up with is I was raised to trust doctor knows best.
I know better now!
Recovering from the surgery was easy enough, it was adjusting to life with hypothyroidism that was the real challenge. I now know the wisdom of that saying “out of every hard time, something good will come, nothing is lost.” It took a long time to get there though.
I endured some of the darkest years of my life then, with a little boy to care for and no hope that I would ever feel well again. I was constantly told my thyroid levels were ‘normal’ despite being so tired I was unsafe to drive to hospital appointments. I became obese, lost my hair, developed high blood pressure and tachycardia, had high cholesterol, insomnia, tinnitus and carpal tunnel among many debilitating new symptoms.
To be constantly told these symptoms are nothing to do with the recent removal of a body part made no sense whatsoever to me. Neither did the diagnosis of Fibromyalgia, made, incidentally, by a doctor who didn’t examine me or look at blood results.
Once the panic attacks began in earnest, I hit my all time low, real rock bottom. Fear was my constant companion. The sun could be shining and out of nowhere a sense of utter doom would come over me. My heart felt like it was bursting out of my chest. There were many trips to the emergency room where of course, no cause could be found. Cardiologist ran extensive tests and could see the ectopic heart beats and tachycardia come over me but were unable to establish the cause, only saying it was endocrine related. Endocrinologists dismissed me as usual, saying thyroid wise I was fine.
I had exhausted all avenues. Looking back, the day my family doctor suggested I apply to be registered disabled was the turning point for me. I wept in her office, wept to my husband later that night, cried myself to sleep and woke hours later clear in my mind this was time to call it a day. I had no quality of life to speak of. I rarely left the house, couldn’t make plans, didn’t see friends, didn’t live. What was the point of this charade?
My beautiful, longed for baby was now an anxious seven year old who saw his mother carted off in ambulances all too often. He’d developed a swallowing problem and for months was unable to eat solid foods. Tests found nothing and I realised this could have its roots in his fear of losing me.
What was I doing to him?
To my husband?
It really did seem clear to me then, I would be doing them all a favour by killing myself.
Speaking to my husband about my plans was the saddest time of my life. There was no drama, no big scene, or tears. I just laid it on the line, the positives of staying alive and the negatives and he could not argue with my logic. He tried, really tried but he literally couldn’t assure me that I would get better. How could he? I’d tried almost everything, saw every doctor.
It was all in my head! The bloods were normal.
I was just this forty four year old woman with the body of a geriatric and the mind of a depressive and no one knew why. The pills didn’t work, not the Levothyroxine, not the antidepressants, not the Tramadol, not the sleeping pills, not the beta blockers, not the anti inflammatories, not the acid suppressors, not the laxatives, not the anti anxieties. Nothing worked and everything gave me worse side effects.
What they might be good at was ending this excuse for a life and that was the decision I made that evening, to stock pile the drugs and commit suicide four weeks later, when I had put my affairs in order.
What happened to prevent me going through with it?
My husband quietly researched and found what I should have years before, real information on how thyroid patients are not always well on Levothyroxine, despite so called normal lab results.
He found an excellent online support group run by Thyroid UK, and through them, the wonderful Dr Skinner who tragically died over a year ago. I sacked the useless Endocrinologist whose mantra was ‘your bloods are normal, it’s not thyroid related’ and began taking natural desiccated thyroid. I read up on nutritional deficiencies that often go hand in hand with autoimmune disease and raised my b12 and iron levels which had been dangerously low.
Recovering physically was only part of the battle though. The emotional impact of being essentially neglected and lied to by the medical profession hit me hard.
What to do with that impotent rage?
Where to direct it?
Why are (mainly) women in their hundreds of thousands having their reality denied like this, every single day?
The treatment for thyroid disease is nothing short of scandalous.
That’s when I decided to petition the Government in Scotland where I live. The health of the nation’s female population is a feminist issue as well as a political one and cannot be ignored any longer.
The Scottish Parliament has so far been wonderful in support of this petition, holding meetings with leading Thyroid charities and Endocrinologists to try to uncover the issues we face. Currently the government is planning a Listening Exercise to establish what goes wrong for thyroid patients from diagnosis to treatment and the Petitions Committee themselves are considering their own enquiry, acknowledging the seriousness of the situation. Things take time to come to fruition but I am very hopeful this will yield results and new research backing up my petition is being peer reviewed all the time.
Meanwhile, I try to recover the years I lost to this utterly treatable yet poorly managed disease.
If it wasn’t for the kindness of strangers, I would have gone ahead with my planned suicide.
The wonderful patients on forums here in the UK and in the USA gave so generously and tirelessly of their time to guide me in my thyroid journey. I try to pay it forward where I can whilst still finding some balance in my day to day life, to be with my family who suffered along with me.
I have no problem talking about my plans to end my life, or the mental health problems I suffered whilst ill because the stigma and shame associated with these are not mine.
The shame is that of the medical profession.
I refuse to feel any shame for their incompetence and medical negligence.
When I have the usual off day we all get from time to time, I can feel like walking away from all things thyroid and forgetting about the battle we still face. I don’t though, I take time out and come back more resolved than ever to keep going because without good people like Hypothyroid Mom and the online thyroid community, many lives will surely be lost. Sharing our resources and experiences is what will save our lives.
We will win this battle because we have right on our side and when we do, it will be time for well deserved celebration and good health.
About Lorraine Cleaver
I am now an impatient thyroid and hypoparathyroid patient. I have petitioned the Scottish Parliament to ask for better thyroid testing and treatment PE01463: Effective thyroid and adrenal testing, diagnosis and treatment. You can find me on Facebook Thyroid Petition Scotland, Twitter @lorrainecleaver, and Paper.li #Thyroid News.