I know this sounds really desperate … but I am!
My lovely mum is in hospital and she’s really unwell but the doctors don’t seem to be able to find out why. We are so worried - she’s fading before our eyes and has aged about 15 years in just a few months.
if any medic or savvy person is reading this, I’d love any idea of what I can suggest.
my mum is 78 with well managed hypothyroidism and she has Covid mildly this year. at first we assumed her symptoms were linked to that. She’s normally very energetic for their age and has always been in good nick.
Symptoms
Anaemia
low bp & racing heart
heartburn (now improving)
ateial fibrillation dx 2018
fatigue
dehydration
loss of appetite
craving salt
low mood
blood in urine - started a week ago
intermittent stabbing pain in lower left quadrant - started a week ago
lost all strength in her voice - now v weak.
one 8 day bout of constipation in August and some sluggish bowel in general - although this seems to have largely resolved
biochemical markers
potassium low
sodium low
CRP VERY HIGH - 134 a week ago now swinging between 101 and 123
HB (91) and Ferriritn low (5)
cortisol is normal so not Addison’s although we are waiting for a synectin test
TSH normal because she takes levothyroxine
creatine slightly raised
ALT & AST slightly out of range (by a point or two)
May: initially the GP dx Hiatal Hernia because constant nausea and heartburn
June-July fatigued
August: she then had a really bad UTI - fixed
then an ultrasound indicated a polyp on bladder but she wasn’t well
enough to go to do a urogram. I had to move her in with me to look after her and as we’re in England and she’s in Scotland - this meant starting the two week wait all
over again.
September: she’s been in hospital a week admitted because her blood pressure fell through the floor and she has tachycardia.
diagnostics
Private CAT scan neck to groin - completely clear so no obvious cancer of structures
bowel test clear - no blood
brain scan clear
EEG normal but it says previous heart attack
due: gastroscopy and colonoscopy next week as inpatient
her private consultant who we went to re hiatal hernia, is convinced she has cancer but he’s going mainly on CRP levels and anaemia and exhaustion. I think that’s tenuous?
I think if she does - I think most likely bladder - but there seems to be no urgency is getting her a cystoscopy even though she’s in hospital. Can I insist on this being done as an inpatient?
despite the cortisol number, I really think she might have Addison’s disease as those symptoms fit completely plus we’re a family riddled with autoimmune diseases and she’s had a horribly stressful few years. Also there’s a link with hypothyroidism which she has always had.
Her health really fell off a cliff earlier this year when there was so intensely upsetting stuff going on in the family. Part of me thinks that much if this is stress and depression. That’s the exact point at which she got much worse - sleeping all the time constant heartburn and basically living on milk & Omeprazole.
has anybody got any ideas? Im
being proactive as I can but ultimately they don’t seem to be in a mad hurry to diagnose her and I’ve told them I’m not taking her home until we know what’s wrong and she’s been stabilised and has a treatment plan in place.
Thanks for listening
id be really grateful for any advice 🙏
Especially on how best to advocate for her.
I’m terrified that something is being missed and that she might die. She’s just so weak