The early 70s and Emily, my Great Grandma, is being visited by her granddaughter Linda. Emily has had two operations and radiation treatment due to an overactive thyroid. She looks skeletal due to the weight loss despite a hearty appetite. Emily passed away in 1978. It was old age but possible sped up due to the thyroid complications.
Fast forward to 1990 and Linda, my Mum, has now been diagnosed with an underactive thyroid. It began with constant fatigue and weight gain. We’re not talking a gradual weight gain but a stone a month over a few months and this is despite being active and eating what would be classed as a healthy, balanced diet. Blood tests were run and nothing came back. Also, abnormal cells were found during a routine smear test and her periods began to alternate from being very heavy to missed completely. Eventually, a diagnosis of underactive thyroid was made. The battle continued, fatigue and weight don’t improve, early menopause, sleep issues, brain fog just to name a few of her many symptoms.
I knew she wasn’t well back then but I was 13 so was more preoccupied doing what 13-year-olds did in 1990! I remember visiting Mum multiple times in hospital whilst tests were being run, my Nan coming to stay with me and my brother till she was back home, but I didn’t really understand. I also remember my Mum saying “I hope this ends at me or even skips a generation so I don’t have to see my kids go through it.” It’s only as an adult I understand what she means.
Fast forward to 2007, Mum’s words fully resonated with me, and my thyroid decided “Nope! Not skipping you mate!” Cheers thyroid.
The first symptoms I remember were heart palpitations and a constant tremor of my hands. I did the usual of putting it down to stress. I’m the sort of person who has to be really ill before I consider seeing the Doctor and taking time off work, so I just carried on as usual and thought it would pass! “Nope, still here!” Okay Thyroid, I know!
Some days the tremor was manageable but other days not so, friends wouldn’t let me carry drinks as they would be more likely to end up all over me! Anxiety attacks kicked in, I remember having a meltdown in Asda due to them moving the red pepper. The simple act of a shop having a re-arrange resulted in me frantically wondering the shop, not being able to see it and leaving the store with nothing but a racing heart and fighting back tears. Eating out became a problem. Finger foods were not bad but try eating a meal with a knife and fork when your hands shake uncontrollably, same as the drinks, it was all down me! People naturally stare as well; I was aware of folks watching which in turn added to the anxiety. So now I’m thinking, time to book the Doctor! I wanted a T-shirt that said ‘I’m ill, I’m not an alcoholic’.
Doing my usual of going into the Doctor and saying ‘sorry to disturb you but…’ I listed my symptoms which by this time were anxiety, always boiling hot, heart palpitations, a swollen neck leading to difficulty swallowing, sleep difficulties and the tremors. Blood tests were run and it eventually came back as an overactive thyroid. I was given beta blockers and carbimazole and booked back in a few months to see how I was getting on. At this point, I felt the calm and relief you get with a diagnosis. Great I now know what I’m dealing with and I can begin to do something about it, I’m not going mad!! Yay!!
Got to say the medication worked! I felt fine again. After about a year though I was told my thyroid levels were back normal and taken off the medication.
I was fine for a few years, and I didn’t really think about it if I’m honest, then in 2011, it came back with a vengeance. The tremors were the first symptom, at least this time I know what it was. So back on the tablets and referred back to Endocrinology. Here I was advised that due to its return I should go down the radioiodine treatment route and if this didn’t work my thyroid would need to be removed. Either way, I would end up with an underactive thyroid for life.
Now, this is the part of my story where hindsight comes in. At this time, I confess I hadn’t done much research, I knew the basics, but I didn’t look into any alternative routes. I was a young woman making normal plans, not expecting to have to research a life-changing condition. Who does?
So I have Morpheus offering me the red or the blue pill, either way, it’s going to be life changing for me and I’ll never be the same again. So I swallowed that radioactive pill in 2012. I recall the tablet being large and given to me in a sealed metal cup, roughly the size of a travel mug, the pill came out of a sort of metal straw at the top. Once I had swallowed it the Nurse kept a few feet away from me as I was now radioactive. I class it as my quarantine period as due to the high level of radiation I had to be signed off work for two weeks and stay in my flat because I could have adversely affected fertile and pregnant women. I did have a friend visit and bring me cookies which I was grateful for as even this introvert was starting to go stir crazy towards the end. After two weeks of taking it, I felt the onset of underactive symptoms.
A list of symptoms I now battle with are fatigue/tiredness (no matter how much sleep you get and an inability to wake up), unstable body temperature (I’m either boiling hot or freezing), IBS (not knowing if you’ll be constipated or have diarrhoea from one day to the next affects your way of living, too much information sorry!), aching joints, muscle cramps, carpel tunnel syndrome, slow heart rate, anxiety, vertigo, depression, brain fog, slurred speech and forgetting words. And these are on a good day! There is also weight gain, I am now following the Weight Watchers plan and have so far managed to lose 1 stone. It’s slow going, but it’s going!
Another symptom that has recently kicked in now I’ve hit my 40s is perimenopause. Yay!!! More hormone imbalance and hot flashes to add to the already irregular body temperature! Too much information (again!) sorry but my menstrual cycle is all over the place, I use to be as regular as clockwork but now have no idea what to expect from one month to the next. I have since discovered a link between thyroid, radioiodine and early menopause like I said, hindsight! But again, who expects to have to research a life-changing condition?
This is my present but I also have a living representation of how my life could be as I grow older, my Mum. Now in her 70s she still struggles daily, more so than I do, along with her thyroid medication she is now also diabetic and takes morphine to get her through the day. Are they all connected to thyroid? Some research I’ve read says yes they are but I don’t know for sure. All we know is the list of symptoms grows each year in marked contrast to her peer group.
I think I have the right to be scared, and I am. I get up, do a full-time job, paint, have piano lessons, occasionally go jogging and socialise with friends. I put on that brave face but underneath I’m aware that at any given point my symptoms could flare up and prevent me from doing any of this. Yes, I’m scared that one gland in my neck has so much power.
As well as the physical symptoms it has also had an effect on how I think about relationships. What if they want children? Many women conceive and carry a child to term fine with a thyroid disorder, but the number who don’t is a lot higher. Unable to get pregnant or miscarry is common. Add in my age and beginning early menopause means my chances of becoming a Mum are now pretty slim. So it’s not ended with my Mum, but perhaps it will with me? Am I at peace with this? This is the first time I’ve written this fact down and not going to lie, I’m now crying. All I know is the choice was taken away from me and that was hard to accept!
All of these factors change how I view a potential partner – am I being selfish? But I feel going into a relationship, it wouldn’t be fair on him. I also feel it wouldn’t be fair to go into a relationship only to suddenly become iller. I watch my friends date, part of me envies their normality about it but I smile and listen to their stories and help them choose that perfect dress for their upcoming date all the while knowing this so-called normality is denied to me due to my body and the condition that lurks in every corner and affects each day. Naturally, he would be told about my thyroid, I would be honest from the outset if I did meet someone and it looked like he was going to be in my life in some way, and then I guess it’s up to him. At what point though do you discuss all this? Over starters on date one or date number six. “I’d like a white wine please and oh by the way I have a critical illness and most likely can’t have children” Not exactly a good opener. So I think I find it easier to remain single at the moment so none of this is also put onto another person.
Now a lot of people will be thinking ‘we all feel tired/down/anxious/etc. every now and again’ Yes I know, I was one who use to think like this, but I can assure you it’s nothing like living with this daily, It’s like your body has a conversation before you wake up and they all decide which symptoms are going to be present that day, a good day is only a couple surface, a bad day is most of them show up to the picnic.
I now take 125mcg of Levothyroxine daily, I’ll be on this medication for the rest of my life. Without it, I wouldn’t be able to get out of bed in the morning (literally) and the stark reality is I could even be dead within the year.
So, Thyroid – Yes I live with it, or it lives with me. It doesn’t define me, I won’t let it, I still enjoy life and want to be the best version of me but I know some days are tough. With that in mind, I foolishly said yeah I’ll do a bungee jump to raise money and awareness for Thyroid UK. I’d like to say wine was involved as I hate heights but I decided this on a cold Thursday morning. It requires me to leave the flat, socialise and worst I can’t do it in my PJs! But it’ll be fun (if I say it often enough I might believe it!)
© Keeley Pearson
And I would like to thank Angela Lewis for taking the time to edit and ghostwrite some of the more emotional bits for me. You can check out Angela's work here. https://oddsocktree.co.uk/
