Lucy Green, Thyroid Thrivers
40 years young
Diagnosed in 2009
I grew up in Hong Kong and was 14 when I started to have seizures during swimming practice. I even passed out in the pool. I was on the swim squad, our coach drove us hard. Life at home had been very tough for a couple of years.
The seizures start off with uncontrollable shaking, which becomes spasms and sometimes I’d lose consciousness; they end in a temporary paralysis and an uncontrollable need to sleep.
I was diagnosed as epileptic and put on medication; the result was multiple seizures a day. I was not epileptic. Months of tests followed and the eventual conclusion was that I might be hypoglycemic. At 19, I moved to Manchester, England, to start University. Having never lived in a cold climate, it came as a shock. My seizures increased and I was numb with the cold, so much so that I got frostbite on my toes one winter. Occasionally, a Doctor would want to run tests for blood sugars or iron, but the pressures of University and living away from home were the usual explanation. After graduation, I moved south to work in London. The seizures grew further apart, though. At work, I was once left slumped in a chair to recover, wheeled to face a corner of the office “for privacy” and my frozen right hand, which is always the first sign of a seizure and the last thing to recover, got its ‘gimp hand’ nickname.
Apart from the seizures, my intolerance of any cold steadily got worse and was joined by a host of other seemingly unconnected issues that snowballed after the birth of my beautiful daughter in 2001. I was my own worst enemy, only going to the Doctor when I was desperate and thus, doing nothing but confirming his opinion….that I was simply a struggling new mum.
A couple of years later and mid-divorce, when a particularly nasty seizure landed me in the hospital,
I met an “eminent Consultant” who made it clear that, in his opinion, I was faking – the paralysis in particular. Ten minutes later, he darted through the curtains, drawn round my bed and hit my knee and then ankle, with a reflex hammer, to prove his point. He didn’t get his proof but, I was still sent home with the words “fantasist” and “manic depressive” now part of my medical history.
It wasn’t until 2009, when a Practice Nurse told me she was going to run a thyroid panel, that I got my REAL diagnosis. On the 8th October, the results came back: my TSH was 7.82 mu/L (0.27-4.2 U), my FT4 was 12 pmol/L (12.0 – 22.0 U) and my TPO Ag was 234 iu/mL (0-75 U). I had Hashimoto’s Thyroiditis, was put on 100mcg of Levothyroxine and told that everything would be fine.
Having an answer, finally, did give me hope and I truly believed that with the right level of medication I would get better. I had my gorgeous girl and was extremely happy with my boyfriend; it was a wonderful time yet, less than a year later, I was at my darkest point and close to losing everything. The insomnia was now full-blown and what sleep I got, left me just as exhausted. I couldn’t get warm, summer or winter. My skin was scaly and spotty, my hair a straw-like mess. My body ached so badly that I shuffled, hunched over, rather than walked, and a flight of stairs could reduce me to tears. I rotated through a cycle of constipation and diarrhea, combined with acute nausea which could last all day and for several days at a time. I became very anxious and fixated on checking things multiple times. I struggled to finish thoughts or sentences, or remember names and even basic words; oddly, kitchen equipment and body parts in particular! My libido was non-existent and I hated even to be touched. I had severe depression and my frustration brought on violent mood swings which I aimed, horribly, at my family.
In my mind, I refused to be defeated, fighting myself and determined to, at least outwardly, look and act as normally as possible. I went to work, I smiled at parties and I drove my poor boyfriend mad with my “game face”, which he so rarely saw in the confines of our home, where I let the façade fall and all my anger and frustration come out.
I was now on 175mcg of Levo and my GP wanted confirmation of my depression before she would increase it to 200mcg. So, to tick the box, I went to therapy. There I learnt to face things, to talk rather than lash out, to learn for and heal myself rather than just be angry at the failure of my Doctors and, most importantly, to let people in. I told my boss at work, for example, and found in him a genuine source of support and friendship; I am also extremely lucky to have, in my family, two people who showed me what real love, support and forgiveness is. I was able to step back from the quagmire of my thyroid illness with a list of what I needed to address and the steps that I was going to take, to do this. Not everything was necessarily conventional, but it was all aimed at the item at the top of the list: “find my joy and save my family”. I took up old hobbies again; sewing, photography, writing, yoga and meditation: I would struggle with them all at times but, they felt like old friends and each helped me to address specific issues, boosting my confidence and becoming vital therapies.
We had moved to the country and I walked our dog daily, hating each painful step but focusing on, and finding strength and solace in, the beauty around me. I devised a number of ways to structure my day, lessening the anxiety and helping with the brain fog. I use my phone to keep track of everything (I’m in trouble if I lose it!) and back this up with handwritten notes in beautiful notebooks, which I carry with me. I found ways to make things fun, especially for my daughter. Gimp’s hand and brain fog are no longer things that make Mummy scary and we made games out of the word loss and obsessive checking.
I read every book, blog page and forum post I could find on thyroid, hypothyroidism and how diet and supplements could help. I paid to see an Endocrinologist, who was as patronising and unpleasant a man as I have ever come across, but through whom I could get the tests that I needed done. By now, I knew enough to understand the results and take the information to help myself. I stayed on the medicine, despite him taking me off for three months and insisting I stop, because I am better, mentally and emotionally, on it. Again, against his advice, I stopped eating meat and almost instantly noticed a dramatic change in my body. A year later, I stopped eating dairy and my digestive issues improved again. My TSH and T4 improved enough that I was able to argue a reduction in Levo to 100mcg for my thyroid; a huge victory as far as I was concerned, and my TPO Ag in 2012 was 184. Moreover, I learned about adrenal fatigue and I think have found the reason for my seizures. I’ve only had one since actively managing my adrenal function and it was during a time of extreme stress.
My symptoms and I are all now very much improved. With the exception of the sleep issues, which seem pretty permanent, I cycle through stages, rather than everything hitting me all at once! This winter has been the first where I’ve felt like I am struggling again with an increase in symptom intensity, a Basal temp of 35.8-36.5C, TSH 4.44 (0.4-4.5) and T4 10.8 (10-24). My local healthcare trust will now only test Thyroid Stimulating Hormone; I can request T4 but it is not guaranteed and T3 is refused. Once again I am reading and tweaking and tinkering. I have also wrestled a referral to a new Endocrinologist out of my current GP so that I can get a full set of blood tests.
I have learnt to become my own Doctor and, more importantly, advocate. I accept myself, Hashi-quirks and all, with compassion and humour and, whilst I no longer expect to “get better”, I do fight for a quality of life that keeps both me, my thyroid and my family happy and thriving!
Questions or anything to ask Lucy about her eventual thyroid diagnosis? We want your thoughts in the comments section–Please!