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.

Have you been tested for Coeliac disease?

Have neurological causes been ruled out?

Have you spoken with a reputable nutritionist who can advise what tests to have in terms of deficiencies? It sounds like you have depleted all your resources having two babies so close and pregnancy can also disrupt and change your gut microbiome considerably. Have you also had your thyroid checked thoroughly? Sorry you're feeling so poorly. I've felt similar after having recurrent miscarriages and I'm always battling with low iron and B12. Each pregnancy, even when lost early, seems to strip my energy out of me and I have also noticed my teeth deteriorate too.

Malnourishment specifically being deficient in vitamins like b12 can have a lot of really nasty symptoms some of which you have, I assume you've been tested for this?

I don’t have coeliac but can not eat gluten/wheat beyond an odd digestive biscuit and sometimes not even that
I think my thyroid has been checked but will confirm
b12 and iron both low but they don’t seem to want to do anything about it and I don’t tolerate oral supplements at all.

Would B12 injections help if you can’t tolerate oral? If you can’t tolerate oral iron eg ferrous sulphate would liquid iron help - can you tolerate liquid rather than the tablets?
not a doctor but I think you need to push this for a second opinion/further investigation as doesn’t seem right that you feel this awful
so much of the time.
hope you can get some answers

Get B12 injections from the nurse. Just tell them supplementing hasn’t worked and they will give them to you. Iron tablets do tend to be quite harsh on the stomach, have you tried Spatone liquid? I learnt from MN that you can take more than the single dose if you are anaemia and they’re a bit gentler. If you’re properly low and can’t get on with those either then push for an iron infusion.
Re the muscle spasms have you tried magnesium supplements?
Have you been tested for parasites?

My stomach problems are the same as yours, but mine is 24/7 pain not just a few days a month. Although it started that way.

I've seen doctors dozens of times, had cameras inserted in both ends, live on antacids and have tried every medication available and no cure.

Doctors all just guess now. I would say that the pains and side effects get worse if I let my stomach get empty so I have to eat little and often.

Have you been tested for Helicobacter pylori?

Agree with @HopefulH - a nutritionist can assess for nutritional deficiencies and then advice, as it sounds as though you aren’t absorbing your nutrients optimally.

If you have GIT issues such as constipation or intolerance to usual iron supplements (ferrous fumerate), have you tried different forms such as iron bisglycinate, or floravital? Also, Beef liver capsules are a nutritional supplement that contain iron and cofactors that are usually well tolerated.

Hormone changes are definitely associated with gallbladder issues, which can present as an intolerance to fatty foods and digestive issues. Perhaps this has already been investigated?

Another aspect that should be considered is pathogens - Helicobacter pylori is one that can cause a lot of digestive issues.

Has omeprazole been discussed at any point? Not as a long term solution but as a short term relief for your symptoms, it reduces your stomach acid levels.

I'm not in any way medically qualified but aspects of this sound like reflux. We're dealing with a sudden onset of this in our house just now that started about 6 months ago and haven't got to the bottom of it yet.

Odd question perhaps but are you hypermobile? There's a link between that and reflux/gastric issues according to my physio due to loose connective tissue around the oesophagus.

I was thinking thyroid (assume they’ve checked) and then type 1 diabetes but doesn’t quite fit with that apart from the losing weight and malnourished part.

I hope it’s sorted for you soon.

Hey, have you seen a cardiologist or neurologist? What is your resting/standing HR/BP like? This all sounds like an autonomic nervous system issues and there are things to help. Things that might help you anyway like upping your sodium and drinking only high-value electrolytes to keep up your essential vitamins/minerals even when not able to eat.

I'm so sorry you're going through this. You sound like you could greatly benefit from a dietician referral from your GP; your BMI and weight loss would qualify you, plus you sound chronically malnourished, you poor love

Sending so much warm love to you, honey.

I'd rule this out first then consider acid reflux is more likely to be too little acid than too much.

In short food should hit an acid environment in the stomach which triggers the valve to close. Not enough acid = vale stays open and allows the acid to rise into the throat.

You could try the bicarb test at home to confirm this, look up Dr Myhill bicarb test for details.

Omeprazole/antacids and a slightly alkaline gut reduce absorption of vitamins and minerals.

Why the hysterectomy?
All the symptoms are red flags, I can see why you are concerned.
Have you had a full blood count?
You say you’ve been seen privately, what tests did they do?
Have neurological issues been ruled out?

It sounds like my Long Covid. Some days I barely eat anything - I've been using yFood drinks because they have a lot of nutrition in them. Omprzalone helps, as does taking vit D and B12 by oral spray and Syton liquid iron every other day.

I'm so sorry you're going through this.

I had every single one of these to the same degree but also chronic diahorrea for the 1st four months post partum and when I went to the GP I got put on the 2 week pathway for bowel cancer. It thankfully just turned out to (just!) be ulcerative colitis which seems to have been triggered by pregnancy.

If B12 is low, it can cause very serious symptoms, and you should be having injections. It can cause death it is that serious. Of course it could be other stuff too, but my daughter was clearly very unwell when B12 was 80. Please follow this up.

You aren’t going to die. I had terrible nausea and tummy upset, I needed a couple of months of lanzoprazole to reduce my stomach acid and give it time to heal. Then I came off the meds and my tummy was still delicate but slowly improved. Mindfulness and reducing anxiety helped too.

I would stop taking the contraception, you need to eliminate everything as much as possible to rule it out as a cause. Get yourself some vitamins too. Do you know your blood results? The NHS often tells you you’re in the normal range when actually you’re borderline low and some countries would consider you to be deficient and offer treatment.

Maybe thyroid issues ? I have postpartum thyroiditis and it's awful. I assume you have had a full blood count already though

Have you had your cortisol levels checked? This can be a marker for Addisons or Cushings.
I had very similar symptoms to you OP and it was an extremely long road with multiple specialists to find a diagnosis.
Fingers crossed for a resolution for you

Are you deficient, have you had bloods done?
Also could be dietary intolerance, gluten or lactose maybe?

It sounds like it could be something autoimmune and there are loads of different rare conditions - keep pushing for tests and referrals.

Some kind of auto-immune thing? I would see about a referral to Rheumatology.

Snap @Bornonsunday !