Charlie, 23
Hello. My name is Charlie Schofield, a 23-year-old woman and this is my POTS story. I am currently a full-time primary school teacher. I’ll start right where it all began. I was always active, always fit, always healthy. An agile gymnast with a passion for keeping myself and my soul healthy. Summer 2015, commencing university, I became fatigued and started having painful migraines. My GP did no tests, put it all down to the contraceptive pill and took me off it. I never thought anything else, until 2 months had passed.
I had started university in Manchester and began to feel more and more ill. Having to nap every day, despite having 10+ hours sleep most nights, becoming dizzier, more lightheaded more often. I travelled to and from Manchester and home to the doctors to be told;
“your bloods are normal”
“maybe you are not eating right”
“you are a uni student, maybe it’s that”
I thought, ‘maybe I am being overly dramatic’, and I should just get on with it. November came and I travelled home on the train, unable to breathe or swallow. Told to drink lemon water and paracetamol, to find out I had tonsillitis and glandular fever. For months after that I was told ‘oh you’re just run down’. I asked for them to check my thyroid due to family having the same problem. One doctor was great and checked my thyroid and antibodies, finding I had an underactive thyroid. I began the treatment of levothyroxine, but something still wasn’t right.
6 months passed and I had an appointment with an endocrinologist, who said it wasn’t just my thyroid. The doctor wanted to test for lupus, MS and a bundle of other illnesses.
MRI one week, CT the next. 24 hour ECGs. A random referral to rheumatology for the pains in my legs and joints. He said I was hyper mobile, which I knew anyway. He emailed the GP saying it was chronic fatigue syndrome and I never saw rheumatology again.
Over the next few years, I became more ill, but adapted my life to cope with it. I scheduled daily naps with food after rather than before to ensure my body was using energy correctly. I spent days not reading when I knew I was going out the house as that made me 10 x as fatigued.
“Oh you’ve lost weight”
I dropped from 8 stone 13 to 7 stone 6 all in the space of 2 weeks. People said, “oh you’ve lost weight” “I hope you’re not on a silly crash diet” It just fell off me all of a sudden and I ultimately had no control over it. So back to the doctors it was again.
A human pin cushion I was, bloods for this, bloods for that. Then a friend said to me “I know someone who’s been diagnosed with POTS which sounds similar to what you’re experiencing.” Of course like most people I’d never heard of it, unless it was pots and pans in the kitchen. I did quite a bit of research before going to my GP, then mentioned it to him. He said “oh I’ve never heard of that, it’s rare, so you probably don’t have it”.
More time passed…
We ruled some things out, not MS, not lupus. But repeat bloods showed I had antiphospholipid syndrome. Another thing I had no idea about, but I did what I do and got on with it. My blood is too thick but not thick enough to be medicated is what I was told that week.
The GPs were sure that I had chronic fatigue syndrome but I didn’t quite believe. To them my case was closed and I just had to deal with it. To me my case was very much open as the symptoms weren’t all that similar. Heart palpitations, syncope and weight loss were not linked to this illness?
I went to a different GP again to see if I could get any further. I told them about PoTS UK and doctors that specialise in it. She began a referral in early 2019.
My GP surgery were not organised
I travelled to Royal Hallamshire Hospital in Sheffield to see a PoTs nurse in late 2019. They took my blood pressure when lying and standing and monitored my heart rate. They needed more tests but my GP surgery were not organised. The tilt table test was the first to come through, all the way to Northern General. I lasted a mere 4 minutes on the table until the cold sweats, low blood pressure, irate heart rate, dizzy spells and syncope came over me. 72/43 blood pressure, 167 heart rate.
The PoTS specialist was sure that they were ready to diagnose me but still had to rule out a few other things first.
Adrenal gland failure. Sounds scary right. A cortisone blood test was done at the hospital and that came back with more bloods needing to be done to confirm it. A month down the line, I went back to Barnsley Hospital for a Short Synacthen test. Finding out that after all, my adrenal glands weren’t failing.
In March 2020 I FINALLY got the 24 hour ECG and echocardiogram appointment through to check there are no further complications with my heart. On March 23rd the covid-19 pandemic lockdown in England began and my appointments were cancelled. After many telephone appointments with the POTS specialist and her liaising with the GP, the 24 hour ecg and echocardiogram were re-booked.
It’s now two more weeks until these tests and then another week until my appointment with my specialist.
The future is as bright as you believe it will be. With the correct treatment and diagnoses, I can(hopefully) slowly become more like my old self again, something that has been lost for so many years.
And that is my POTS journey so far.
Charlie