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Original poster

DM seriously Ill but DRs can’t work it out

34 replies

FixTheBeak · 18/09/2022 06:40

Please help 🙏

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
pain in lower left quadrant
lost all strength in her voice - now v weak.
ione 8 day bout of constipation and some sluggish bowel in general - normally she’s a very reliable once a day

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)
apparently cortisol is normal so not Addison’s
TSH normal because she takes levothyroxine
creatine slightly raised
ALT & AST slightly oit
of range (by a point or teo)

May: initially the GP dx Hiatal Hernia because constant nausea and heartburn
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
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.

Thank 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.

OP posts:
Arriettyborrower · 18/09/2022 07:11

Have they considered Myasthenia Gravis? Does she have any facial weakness or drooping?
None of her other symptoms a typical of it other than weak voice, but it does have a link with hypothyroidism as the Thymus gland is involved and it is an autoimmune disorder.

I am sorry that you and your mum are going through this, it sounds very difficult and frustrating without an actual diagnosis. My auntie was recently diagnosed with bowel cancer despite having had multiple CT’s and MRI’s done, both on the NHS and privately which were clear. Eventually one showed the tumour and resultant spread, this was over a short time period so it is possible that her doctor is right also.

I hope you get some answers soon.

Arriettyborrower · 18/09/2022 07:12

Also, has she has an endocrinology review? I would say this is super important.

hilbil21 · 18/09/2022 07:19

It does sound very like my late Mum who was in hospital for a good few weeks and they couldn't find a thing wrong with her. She was moved to an "elderly ward" of a different hospital because she was basically just taking up a bed and bingo, Addison's diagnosed, medication given and sent home right as rain.

FoxandFeathers · 18/09/2022 07:20

I’m not a medic but pancreatic cancer is hard to diagnose. I actually got my dad an urgent scan for it after Googling his symptoms (!) after he was told he had anxiety and there was nothing wrong with him. He was already stage 4 by then.
Try and look after yourself, you are under a lot of stress now. I hope you get a good outcome soon x

LiveintheNow · 18/09/2022 07:20

Autoimmune definitely, our family also full of AI conditions. Addison's was my first thought, could it be secondary Addison's? Her pituitary gland should be checked and levels of ACTH. The other possibility is coeliac disease as often connected to hypothyroidism. Diabetes type 1 is also connected. My grandmother had thyroid issues but also atherosclerosis which I think is now considered autoimmune too. I hope you find some answers soon.

TroysMammy · 18/09/2022 07:31

My DM had immunotherapy following melanoma and it triggered "a type of Addisons" she was extremely fatigued before she was diagnosed. She takes hydrocortisone and has a hydrocortisone injection for emergencies but 9 months down the line they can't really say it's Addisons. The endocrinologist she saw in February was as much use as a handbrake on a canoe. She is due a follow up but when that is no one knows.

Since then she has been diagnosed with anxiety (always been a worrier and overthinker) and atrial fibrillation.

Original poster
FixTheBeak · 18/09/2022 07:51

Arriettyborrower · 18/09/2022 07:11

Have they considered Myasthenia Gravis? Does she have any facial weakness or drooping?
None of her other symptoms a typical of it other than weak voice, but it does have a link with hypothyroidism as the Thymus gland is involved and it is an autoimmune disorder.

I am sorry that you and your mum are going through this, it sounds very difficult and frustrating without an actual diagnosis. My auntie was recently diagnosed with bowel cancer despite having had multiple CT’s and MRI’s done, both on the NHS and privately which were clear. Eventually one showed the tumour and resultant spread, this was over a short time period so it is possible that her doctor is right also.

I hope you get some answers soon.

How is your aunt now? Terrifying that so many imaging tests might now show it up!

OP posts:
Original poster
FixTheBeak · 18/09/2022 07:52

Arriettyborrower · 18/09/2022 07:12

Also, has she has an endocrinology review? I would say this is super important.

Do I ask the consultant?

OP posts:
Original poster
FixTheBeak · 18/09/2022 07:53

FoxandFeathers · 18/09/2022 07:20

I’m not a medic but pancreatic cancer is hard to diagnose. I actually got my dad an urgent scan for it after Googling his symptoms (!) after he was told he had anxiety and there was nothing wrong with him. He was already stage 4 by then.
Try and look after yourself, you are under a lot of stress now. I hope you get a good outcome soon x

Well the consultant said pancreatic cancer initially yes - but would it not show on a scan? I kind of discounted loads when the scan came back clear

OP posts:
Original poster
FixTheBeak · 18/09/2022 07:55

LiveintheNow · 18/09/2022 07:20

Autoimmune definitely, our family also full of AI conditions. Addison's was my first thought, could it be secondary Addison's? Her pituitary gland should be checked and levels of ACTH. The other possibility is coeliac disease as often connected to hypothyroidism. Diabetes type 1 is also connected. My grandmother had thyroid issues but also atherosclerosis which I think is now considered autoimmune too. I hope you find some answers soon.

I will ask about pituarity gland / coeliac when I go in

she’s newly prediabetic

OP posts:
Original poster
FixTheBeak · 18/09/2022 07:56

TroysMammy · 18/09/2022 07:31

My DM had immunotherapy following melanoma and it triggered "a type of Addisons" she was extremely fatigued before she was diagnosed. She takes hydrocortisone and has a hydrocortisone injection for emergencies but 9 months down the line they can't really say it's Addisons. The endocrinologist she saw in February was as much use as a handbrake on a canoe. She is due a follow up but when that is no one knows.

Since then she has been diagnosed with anxiety (always been a worrier and overthinker) and atrial fibrillation.

They still don’t know 😳
are her cortisol levels
normal now?

OP posts:
Hanswurst · 18/09/2022 08:00

When my stepmother was admitted to hospital with similarly I’ll defined symptoms and very poorly it took the doctors a really long time to diagnose that she had in fact AIDS. She wasn’t in any risk group, and after a long investigation it turned out she had been given a contaminated blood product in her 20s. Until she became unwell for other reasons it had laid dormant in the form of HIV for decades. I don’t mean to scare you but we wished at the time someone would have thought to test her earlier.
All he best for your mum!

Original poster
FixTheBeak · 18/09/2022 08:06

Your poor stepmother!

my mums never had any sort of transfusion - she’s never been I’ll before! I will ask though - thanks

is she ok now?

OP posts:
Original poster
FixTheBeak · 18/09/2022 08:07

hilbil21 · 18/09/2022 07:19

It does sound very like my late Mum who was in hospital for a good few weeks and they couldn't find a thing wrong with her. She was moved to an "elderly ward" of a different hospital because she was basically just taking up a bed and bingo, Addison's diagnosed, medication given and sent home right as rain.

How long did it take for her to recover? Glad she got an answer.

OP posts:
Choconuttolata · 18/09/2022 08:10

Kidney infection or bladder infection? Is she being treated with IV antibiotics? I would be worrying about sepsis.

There may also be something more chronic underlying too, but the blood in urine, high CRP, low BP, racing heart, low sodium, low potassium and pain in lower left quadrant all might indicate this.

Original poster
FixTheBeak · 18/09/2022 08:17

Sorry - do you mean those symptoms would match with sepsis?

inwas wondering about sepsis myself last night and decided I was being over dramatic

OP posts:
Soontobe60 · 18/09/2022 08:23

This sounds similar to my mum. She had all sorts of tests with no diagnosis forthcoming. After being ill throughout the whole of lockdown, and seeing lots of doctors, she eventually ended up being taken to A+E by paramedics as her blood pressure had dropped through the floor then the following day she died very suddenly of a ruptured aneurysm. She was 84, but prior to the onset of illness had been fit as a fiddle.
Having spoken to a number of medics, I’ve realised that there isn’t always an actual diagnosis that can be made, rather just a list of things that are not as they should be, which sounds very much like your mother. So the doctors then treat each symptom rather than treating a specific diagnosis. I’m assuming that whilst she’s in hospital they are treating her symptoms, eg she’s on a drip for her dehydration etc? It may well be a case of trying different things until they find a treatment that works.

Choconuttolata · 18/09/2022 08:31

Yes sepsis she has high infection marker (CRP), low BP, tachycardia, even anaemia can be due to sepsis or a bad infection. She has a history of a UTI recently too.

Original poster
FixTheBeak · 18/09/2022 08:35

OK thanks
i will ask for both these things to be investigated today 😳

OP posts:
hilbil21 · 18/09/2022 09:19

@FixTheBeak Literally about 3 days and she was discharged. This was after 2/3 weeks of being in the previous hospital where they "couldn't find anything wrong with her".

Original poster
FixTheBeak · 18/09/2022 09:29

That’s amazing! Did she get back all her energy?

OP posts:
hilbil21 · 18/09/2022 10:07

She did. As long as she kept the medication up. She's since passed away, but unrelated to the addisons x

TroysMammy · 18/09/2022 10:49

@FixTheBeak We haven't got a clue what her levels are, unless it was in a recent blood test for an Oncology appointment in the next week or so. She's made a list of questions mainly about the tablets and the "is it or isn't it Addisons".

The ramped up anxiety is due to the uncertainty of the supposed Addisons. She was in hospital a few months with chronic diarrhoea as we were then told the immunotherapy caused colitis (anxiety also causes stomach problems and diarrhoea) but she's always on occasions had to "run to the toilet" over the years, Ice cream, cream and pork also causes it but did she ever stop eating trigger foods? No she didn't.

The immunotherapy was stopped because of the problems she had.

She still moans about her fatigue but as I pointed out the less you do the more tired you feel when you then have to do something.

TroysMammy · 18/09/2022 10:54

@FixTheBeak sorry she was in hospital for a couple of weeks not months. Being on a ward and not allowed visitors and kept in isolation because of the diarrhoea ramped up the anxiety even more. Apparently bar the diarrhoea she was the most well person on the cancer ward.

Original poster
FixTheBeak · 18/09/2022 11:27

@TroysMammy

yrs, it’s hard to tease apart mental and physical symptoms isn’t it

my mum was walking ok, slow and frail but when she was told she probably had cancer , we had to use a wheelchair the next day to get her to the ct scan. It was incredible. The stress is definitely wearing her out as well which is partly why we’re so desperate to get a swift resolution

OP posts: