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

The SST can be within an hour either way of 9am. When the clocks go forwards or back this time isn’t altered so obviously can’t be that important. The time it is taken needs to be written on form and blood bottle

Well the good news is the test has been done - first part anyway

I don’t trust them at all. I heard my mum telling them it has to go on ice. She doesn’t trust them either

@Iwantmyoldnameback
thanks - will check that

@Denny53 yes - her gp took her off that for those reasons. To be fair, she doesn’t need it any more - her stomach seems more settled

Omeprazole made me depressed. That might not have been helping her

The diet you have described isn’t especially high in iron. Age and PPI’s (like omeprazole) can impede absorption of nutrients.

Another thought - have they tested her for a stomach ulcer or H. pylori?

So sorry you and your poor mum are going through this, OP. Have they definitely ruled out heart failure? That's what my mum had and her experience was similar (although not all the same symptoms, hers were more gastric) with very low BP, AF, but no oedema. Took an age to get a diagnosis and she too had been fit as a flea and suddenly seemed to fade before our eyes.

The thing that jumped out at me was the long list of symptoms in your OP and "bad UTI" at the end. My mum had a bad UTI just prior to getting ill. She had it for quite a long while before seeking treatment because the only real symptom was odd-smelling wee, plus lockdown put her off speaking to a GP. It then took ages to treat because none of the usual antibiotics would touch it. Eventually discovered it was quite a rare one and needed a very specific antibiotic. The heart consultant believes the UTI was the catalyst which triggered the heart failure.

I'm sure heart failure has been ruled out but I thought I'd share my mum's experience in case it is any help at all. Also, as an aside, when my FIL was very poorly in hospital we had all sorts of problems with getting doctors to offer a diagnosis or to even speak to us and we found PALS to be very helpful and supportive.

Fingers crossed they find out what is going on and start treating her ASAP.

@Thelnebriati her GI issues have improved in the past week but will ask

@Readerofwords your post made my heart sink…, no they’ve not mentioned heart failure - I will flag up. How is your mum now - did she improve with treatment?

@Fraaahnces i didn’t know that about Omeprazole- will ask - thanks

@FixTheBeak Try not to worry. I'm sure they would have ruled out heart failure early on but at least you can ask them. My mum's was discovered by an oncologist who she was seeing because the GP just couldn't work out what was wrong. He almost immediately said it's not cancer, pretty sure it's your heart. Also the heart consultant said the UTI triggered the HF rather than caused it. So presumably it was already present but to a lesser "symptomless" degree.

This all happened just over 18 m ago and DM is much better now, albeit a new normal as she will never be back to her old self. Her mobility is affected (still improving though) and she is on a cocktail of drugs having never been on anything really before. The psychological toll has also been v difficult for DM. The turning point was being under the care of the most fantastic heart failure nurse who gave her back so much confidence. Also helped me and my DF to really understand mum's condition and put a much more positive spin on it

The problem is I have to harangue them to get anything done so I am pretty sure she’s not been assessed for heart failure. I will talk to them this afternoon

This is not helped by the fact that she’s on some old person ward which seems to be full of dementia patients waiting assessment - staff seem to be quite lackadaisical in their approach. I was in the same hospital a few months ago, also with something unknown and was treated like a queen. I assume this j because I’m a stroppy 40 something but my mum is (uncharacteristically) timid and unsure if everything and cannot even ask for a slice of toast without worrying

I think it sounds like an Addison crisis , I think she needs to see an endicrinologist. It took a nightmare year to get a family member diagnosed. They were elderly too, and drs decided it was the least likely option because it was rare . Once those steroids kicked in it took less than three weeks to feel a lot better.

I'm so sorry to hear that @FixTheBeak . My DM was mostly ill at home although I think she would have been hospitalised if not for lockdown. As it was no GP would even see her, just kept prescribing different anti anxiety and indigestion meds via phone consultation. I had to intervene to get the GP to physically see her. But my FIL's hospital experience was v v similar to your mum's. We would often end up trying to help the poor dementia patients who would be crying out all day long And we also felt than the staff, particularly the doctors, just didn't seem to be doing anything to treat or diagnose, they would wander in on their rounds - a different doctor nearly every day - and um and ah and not really take action. Nothing felt joined up. If they tested for something no-one seemed to follow up and tell us the result. We did go to PALS and they were helpful but it's an added stress when you're dealing with a v poorly parent. (FIL had something different to your mum, btw, just the lack of care and cohesion was similar)

Has she had a bone marrow? I don’t want to worry you but I had exactly her symptoms and mine was down to a blood disorder. It shouts to me as blood cancer if I’m honest and needs to be ASAP . Mines been in remission 4 years now.

@jessycake she had an SST yesterday. If it was a fail I should think she'd know by now

I was admitted for arrythmia diagnosed as Afib. While in hospital I had low ferritin, low hg, and high crp.

Turns out I had HPylori infection and a microscopic bleed in the upper GI tract that had been going on for a while asymptomatically, or so I thought until the above blood tests.

Given Lanzoprazole, multiple antibiotics over two weeks and then blood transfusion and iron infusion. When you have Afib it is important to take anti coagulants, but of course I couldn't because of my bleeding issue. So I had Watchman device fitted. Fascinating stuff. I was lucky to be a candidate for it.

Hope mum gets better very soon.

Ok so it’s not Addisons.

thanks for your suggestions and advice - I am pursuing everything and will let you know how we get on

I’ve asked for a coeliac screen and for the echo gram

She is having a gastroscopy Thursday and hopefully that will iron out any GI issues.

🙏

I will ask about H Pylori as well
x

All her bloods are fine - just Hb and Feeriton that’s off. I will mention though - thanks

That’s exactly what happened with me. My HB and ferritin both were off. It’s a known sign of a blood issue.

Can I ask @CharlotteRose90 if your CRP levels were raised and how much by; and also which blood disorder you had (so I can read up before talking to doctor)

I thought I’d update on the sorry saga of my mums health woes

Her consultant thought she probably had cancer of the bowel or Polymalgia RHEUMATICA and she underwent scans etc - so far all clear. Bowel and bladder cancer referrals were put in at this time.

Eventually her energy levels were soo poor that we had to have her admitted to hospital for tests and to manage severe anaemia. While there she had episodes of tunnel vision which they hospital were completely uninterested in. I ended up calling an optician for advice as I didn’t understand why they were not fussed. In fact one of the consultants recommended that my mum go and see an optician when she got out.

DO NOT IGNORE VISION DISTURBANCES

DO NOT LET THEM FOB YOU OFF

My mum lost the vision in her eye a few days later and she is completely devastated.

it turned out she has a disease called GIANT CELL ARTERITIS which means steroids indefinitely. It is a medical emergency. I am putting the symptoms
at the bottom if this post because I had never heard of it before. To be fair she didn’t have any of the symptoms really so I understand why it wasn’t diagnosed on time.
But I will never forgive them for ignoring episodes of tunnel vision - her eyesight could easily have been saved.

ADVOCATE FOR YOUR PARENTS BECAUSE THEY ARE REALLY VULNERABLE TO BEING FOBBED OFF

BE AGGRESSIVE ABOUT MANAGING SYMPTOMS

CHECK THAT ANY REFERRAL HAS BEEN PUT IN - my mums bowel cancer referral was delayed by two weeks because of incompetence

SYMPTOMS DONT ALWAYS FIT exactly -
my mums only symptom was tunnel vision.

PLEASE PLEASE DONT ASSUME ITS LONG COVID

SYMPTOMS OF GIANT CELL ARTERITIS

(Inflamed temporal arteries)

The most common symptoms of giant cell arteritis are head pain and tenderness — often severe — that usually affects both temples. Head pain can progressively worsen, come and go, or subside temporarily.

Generally, signs and symptoms of giant cell arteritis include:

Persistent, severe head pain, usually in your temple area
Scalp tenderness
Jaw pain when you chew or open your mouth wide
Fever
Fatigue
Unintended weight loss
Vision loss or double vision, particularly in people who also have jaw pain
Sudden, permanent loss of vision in one eye
Pain and stiffness in the neck, shoulders or hips are common symptoms of a related disorder, polymyalgia rheumatica. About 50 percent of people with giant cell arteritis also have polymyalgia rheumatica.

When to see a doctor

If you develop a new, persistent headache or any of the signs and symptoms listed above, see your doctor without delay. If you're diagnosed with giant cell arteritis, starting treatment as soon as possible can usually help prevent vision loss.

THANKS FOR READING