To wonder if I’m actually going to die?

[Thehonestbadger]

Dramatic I know but I’m in a very low place this evening.

Since having 2 pretty much back to back pregnancies almost 3 years ago my health has been completely hideous. Had HG in both so it’s been almost 5 years now since I was healthy!
I can’t eat, burping, acid, constant nausea and upset stomachs. BMI has dropped to 17 I’m freezing and miserable all the time. Presents like IBS only sometimes (rarely but it happens) I can eat anything and be fine. It all seems linked to hormones. It’s maybe 3-4 days a month I can actually eat well though.

I go days without appetite, I’ve cut out all the allergens and tried low fodmap I’ve done it all and nothing reliably works. I take anti acids from my GP and probiotics that were recommended. I’ve been on hormone contraception for over a year and honestly every month feels bloody different no rhyme or reason to it. I’ve had cameras inserted and endless blood and stool tests and it’s all just ‘you’re malnourished and we are concerned but can’t find a cause for your issues’

My muscles are constantly going into awful painful spasms especially in my feet/legs and hands. I’ve lost any and all interest in life tbh and struggle to parent. Feel entirely detached over how poorly I am all the time. My motion sickness has ramped up so high im struggling to use screens literally typing this is causing nausea. Most importantly I just cannot stop weight dropping off me. I begged for a hysterectomy and was told no. All I’m ever told is what it’s not and what they can’t do for me whilst I just get progressively worse.

WTF do I do?

(even went privately for a couple of apts out of desperation and still nothing) hubby is a doctor and he’s baffled, no idea although granted not his speciality.

Nutritional yeast is going to do jack all for a physical health problem.

Eating appropriately for your condition is a pretty good cure for malnourishment in many cases though.

Eating healthily is always going to be a good thing, but in a case like this where there is clearly an underlying physical cause, all the nutritional yeast and bee pollen in the world isn't going to do anything that a standard healthy diet wouldn't do.

Ehrlers Danlos Syndrome? Can be associated with gastroparesis. In terms of the short term, is it worth eating as much sugary stuff as you can to get your weight back a bit? Kendal Mint cake for example. Can you drink milk - lots of full fat milk with honey. Bovril maybe?

Eh this could be me we had a single now 3 then twins now 2 and I've had very bad health.Had alsorts of tests and nothing and am currently waiting for a letter referring me to a specialist to dig deeper. Fatigue like I've hit a brick wall, nausea and digesting problems and pain comes from nowhere and makes my joints swell. I've just also had an appointment with a chronic fatigue specialist still waiting to hear back on that. I hope you manage to get answers to

My daughter had an iron infusion as she could not tolerate it orally

Well a qualified dietician (not a nutritionist) disagree with you @Notahotmess but ok.

For now @Thehonestbadger buy a good meal replacement shake and have a couple every day. It gets into a vicious cycle of not eating - symptoms being worse - eating less because you feel like crap - feeling worse and it can be really hard to break.

I use yFood (not sponsored or anything, just find they taste the best!) to get something into me when I start spiralling. Once I start eating again, I feel better and so want to eat more but on bad days I often have a bowl of cornflakes or toast and not much else.

You could also look at one of the healthy meal delivery services - some come ready cooked and all you have to do is microwave them!

Nutritionists quite often call themselves dieticians when they're not. No self respecting qualified dietitian would be recommending nutritional yeast, trust me.

They would suggest it for b12 if someone had a deficiency but didn’t qualify for NHS supplements.

OP, can you seek a b12 and iron supplement elsewhere in the meantime? You can buy b12 shots privately. Iron perhaps try spatone and see if it helps your energy?
if you don’t have a medical problem absorbing vitamins.

Op can you find out from your Dr what your active B12 was on your last test?

If you DH is a doctor - would it be worth getting your medical notes and seeing what 's been ruled out, tests results and any indicators - so you are sure what's been considered.

Then maybe use private blood service to rule out others - if NHS won't test.
https://www.nuffieldhealth.com/pathology-direct/allergy-nutrition

They are vitamin sprays https://betteryou.com/collections/oral-sprays which is there are minor deficiencies may help and you may tolerate and for Iron Spatone - and there are build up milkshake style drinks usually for ill or elderly you could try.

IBS and hormones are known to be linked -if that's any help
https://www.webmd.com/ibs/hormones-ibs

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3322543/#:~:text=An%20increase%20in%20gastrointestinal%20(GI,irritable%20bowel%20syndrome%20(IBS).

I had very similar symptoms to yours while I was on the mini pill and the cause turned out to be... the mini pill. Doctor who prescribed it refused to make the link as my symptoms were not on the manufacturer's list of side-effects, and he could not help me at all. In the end I came off the pill unilaterally but it took me years to get my health back on track. By which time my symptoms WERE linked to the pill. See Dr Ellen Grant's book, The Bitter Pill. She was one of the earlier researchers on the pill.

I SI b12 every week.
General GPs do not know enough.
Folic acid for absorption..
One a month won't help.

I think you need to do some real detective work on this and I'm sorry but that's hard when you're not well.

So b12, there's a good book "could it be b12" would be a good place to start. There are groups for b12 deficiency on Facebook. Go slow and carefully and judge for yourself whether the discussions are helpful or not. You shouldn't be left deficient and there's some new nice guidance out about this. You can get b12 patches but it may be that you need injections. So talk to your GP once you get you have enough information.

Thyroid, again there are more tests than are offered on the NHS and it seems like often deficiencies aren't picked up. Keep pushing.

If you can't eat wheat then I think I would avoid wheat all together while you get this sorted out. Some people react to gluten, some to glyphosate and I've got a strong suspicion about the b vitamins used to fortify flour. Not all supplements are equal.

Would recommend to start with a full blood count and additional blood tests from the doctors e.g. full pituitary panel. Sounds really worrying and sadly you need to keep pushing for answers, especially when you know in yourself that something is wrong. I hope they find the cause and that it's something easily treatable.

I see that a couple of people have suggested Addison’s. I know someone who started getting carsick and it turned out to be Addisons (she also had a lack of energy). Do you have any particularly tanned bits on your body? The person I know also had these, with Addisons, your body can make excess melatonin.