01 September 2023
My symptoms started about 10 years ago with what I thought was just linked to stress: migraines, stress, sickness and about 2 years later, my thick hair starting falling out (I just thought this was stress alopecia linked to a horrible job I had). The sickness improved when I left a job that was causing a lot of stress (the same one I thought caused my hair to fall out).
A couple of months later, the sickness came back and came and went along with hand trembles (which carried on even without the sickness, I thought this was just inherited from my great uncle) over the course of 10 years! There were times I didn’t have it and there were times it lasted 2-3 weeks at a time, but I would only vomit in the morning or evening.
Every day I was scared to eat any more than salad or toast. Sometimes, I would try something else because most of the time that is all I could keep down. Even the things I enjoyed became hell, like working out. When I went out, I had to remember to bring a plastic bag with me, just in case I vomited. I was put onto anti-depressants too (which thankfully now I’m off).
It was not a way to to live, thinking: Will this make me vomit? It also interrupted many work meetings as I had to excuse myself at times to go and throw up. Thankfully for me, in my job as a mentor, most of my clients were understanding and very sympathetic.
At one point, I couldn’t stop throwing up for about 6 days. We thought it was just allergies/ food poisoning that caused it and thought nothing else of it. But what was alarming was my blood pressure, but the hospital thought nothing of it.
When Covid hit, I had periods of sickness but they weren’t alarming enough for us to think it was anything serious. Fast forward 1.5 years, I started throwing up again non-stop. I couldn't even hold down water, my blood pressure sky-rocketed again and my pulse was fast... too fast! My hands were super shaky too. My sugar levels went crazy. As well as sweating loads, me and my anxiety was like nothing I ever experienced before. As well as this, my chin started growing hair and it appeared that my pheo had changed parts of my hair colour for the worse (graying).
"The doctors kept testing me, non-stop blood tests and then urine tests. Deep down I knew it was to do with NF1 but I wasn’t sure what it was."
The doctors first suspected Type 1 diabetes, then a strange type of diabetes. After this, they thought I had had chronic kidney failure (this was from all the blood and urine tests I had). Eventually I was sent for an ultrasound which showed my kidneys being healthy.
But what showed on there, was a mass of 10cm pressing up against my left kidney. It was at that point I was sent to have a CT scan. Finally, answers were coming through. On my CT scan, it showed I did have a mass of 10cm pressing against my left kidney, on the adrenal gland. It wasn’t yet confirmed to be a pheo, it was started. It was either a pheo or another tumour. I was given another set of blood tests that tested for cancer and hormones. I was also given a spit test to test for cortisol and 24 hour urine test to test for the pheo. It was finally confirmed to be a pheo.
Pheo definition: A phaeochromocytoma (fee-o-kroe-moe-sy-TOE-muh) is a rare, usually non-cancerous (benign) tumour that develops in an adrenal gland. You have two adrenal glands — one located at the top of each kidney. The adrenal glands are part of the body's hormone-producing (endocrine) system.
FINALLY I HAD ANSWERS. I was put on to alpha blockers and told to have a high salt diet and 2 weeks later, beta blockers. I had to take alpha and beta blockers together. The alpha blockers were fine but the beta blockers knocked me out. I also had to have a PET CT scan. I finally had my surgery (an adrenalectomy) to remove it and I am one adrenal gland down but I am much happier to see the back of the hell the monster, as I call it now, caused me. I wouldn’t wish this evil tumour onto anyone! During the test and prep I called it my rotten grapefruit as it was the same size of a grapefruit.
Nerve Tumours UK do not normally share anonymous stories but as this covers a fairly unknown condition, related to NF1, we thought it was worth highlighting to help raise awareness.