AIBU to ask what’s wrong with my ill DM?

[FixTheBeak]

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

Has sepsis definitely been ruled out or has your mum had treatment with IV antibiotics?

Most CRP levels that high indicate bacterial infection.
Blood pressure ’dropping through the floor’ and tachycardia as well as some of the other signs also potentially indicate sepsis.

This is a link to a sepsis red flags sign that medical staff should be looking out for and the sepsis pathway that would the follow it (which should be completed within the hour of first suspecting sepsis).

sepsistrust.org/wp-content/uploads/2018/06/ED-adult-NICE-Final-1107.pdf

The medical team may already have done all this of course, but sometimes the most obvious things get missed and I am concerned that you have mentioned blood cultures are being taken later today which suggests to me that they have not already been taken/your mum has not been assessed for sepsis.

I may be completely incorrect in my concern, but I think it would be worth asking the staff about sepsis.

Thank you. I will ask when I go in. I kind of want to go in now but scared of being sent away as it’s not visiting hours

do you think I can get away with just going in?

cant get hold of them on the phone

Absolutely go

When you go, check her legs yourself for the purple spots associated with septicaemia.
Also I hope it isn't this but ask them to if they have ruled out aplastic anaemia.

Are they sure there is no urine / kidney infection? With blood in urine and high CRP?

Thankfully her blood cells are doing their big just the iron levels

I asked about sepsis and was alll but laughed at

I swear they treat old people like crap a lot
of the time because they’re not being backed up by angry parents. I’m sure this is why children get treated well - it’s not because they’re cute. At the moment - I’m an angry parent - they’re really not doing enough at all.

Was her thyroid checked beyond TSH? They need to check t3 and t4 plus reverse t3. Otherwise they can’t know how her thyroid is. Did she take her levo before the test because that can skew results too.

have they done a bone marrow biopsy

How long has DM been in hospital for and has she improved? Have they actually given you a proper update about what's going on?

It's all very well to eat healthily but is she actually getting enough calories ?

Have they looked at her kidneys/renal function?

With autoimmune disease, it's common for other body systems to be attacked over time - like glomerulonephritis.

Thanks you - will raise this

Her creative levels are spot on
her kidney function looks fine from blood tests literally the only oddity is:
hb
ferrritin
crp

theres really nothing that stands out

She’s not living just on salads, she eating stuff like baked potato with beans too
tomorrow she’s getting roast dinner leftover

salads contain avocado and cheese

I bring in pudding too, yogs or crème caramel

i would say she’s getting about enough food. She normally loves eating.

Throigh all of this she’s only lost half a stone and is still technically overweight by a stone or two

No they are completely shit
I have no faith in them at all
i am constantly badgering them for updates and numbers and they get all
pissy. Like I shouldn’t be bothered about it?

they were supposed to do a synectin test Saturday, screwed up today, now not until tomorrow. Apparently they didn’t realise it has to be in the morning - even I knew that and I’m no medic

When they do the SST (short synacthen test) make sure they also test for ACTH. That's the hormone which stimulates cortisol. It needs to go on ice immediately it's drawn.

I'm going to guess they'll say the actual test was normal.

You need to find out the actual levels at baseline, 30 minutes and 60 minutes as well as the ACTH number.

A low baseline with low ACTH and normal stimulation would suggest secondary adrenal insufficiency and is much harder to get medics to diagnose. This doesn't have the low sodium, high potassium of primary, and often blood pressure is normal too

A baseline under 100 (although some labs use 80) is an immediate diagnosis no matter what time of day it's taken.

Anything up to 300 at 9am is low and needs more investigation.

@Summerofcontent

thanks for the info - are you an medic? Just asking because I want to go down there to make sure they do the test at 10am like they promised. Is that over the top? Or does it al need to be done at 9am

they we’re supposed to test for ACTH and screwed up by not measuring until 1130

They then said that the SST supersedes that test so doesn’t matter

I bet they don’t think about the ice either

they were moaning about the logistics of ward management instead of feeling me of would be fine. Beyond unprofessional.

Get them to test for coeliac disease too. I had almost identical symptoms to your mum and was in hospital too weak and ill to even walk before anyone thought to test. I had very low ferritin, sodium through the floor, constant pain, no appetite, felt sick constantly. Basically you get so malnourished everything starts failing.
i also have well managed hypothyroidism but it can be a precursor to other autoimmune so as well as the addisons, adrenal insufficiency (which I agree with those above it could well be) push for coeliac if they haven’t already done it. If a blood test is inconclusive the endoscopy will show the intestinal damage, if it’s that.

have you considered whether she might be having or have had too much of a particular vitamin? I ask because you mentioned she had a lot of b6 through marmite. Sometimes elderly peoples organs can process too much of something well. These are the symptoms of too much b6 for example:
too much vitamin B-6 can cause:
A lack of muscle control or coordination of voluntary movements (ataxia)
Painful, disfiguring skin lesions
Heartburn and nausea
Sensitivity to sunlight (photosensitivity)
Numbness
Reduced ability to sense pain or extreme temperatures

@FixTheBeak no, I've had Addison's for nearly 25 years though.

The SST should be done at 9am really because the baseline reading will be a more accurate indicator of adrenal function before stimulation but the 30 and 60 minute readings should be similar no matter what time of day it's done

ACTH is the hormone which stimulates the adrenal glands and is a totally different test to the SST but both should be done together to give the best picture

@Summerofcontent

thanks

can you tell me why she still needs the ACTH…. Because if I understand that then I can talk to them about it

just had so little input or concern - I’m driving things forward by hassling them
but I feel like I shouldn’t have to

thanks and I hope you keep well with jt

Ah ok sorry x post

Is her blood clotting ok? Acquired heamophillia is very rare but there has been an increase since Covid/vaccines. That's an autoimmune disease too.

Taking Omeprazole can cause very low salts. I was admitted as an emergency because my potassium sodium and magnesium was in my boots. I had to stop the Omeprazole immediately. I was extremely ill but have improved immensely since I stopped taking it, if she has had a full body scan that hasn’t shown cancer I think you can stop worrying about that aspect
it’s awful that they are not keeping you updated and you should inform PALS !