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.

This sounds horrendous but I don't think a hysterectomy would help you. It sounds more auto immune than gynae.

Agree with others about Helicobacter pylori .
Another possibility
Do you think you may ever have been bitten by a tick ?

You don’t need a hysterectomy bless you. Hopefully you are taking Omeprazole or other PPI. Do you get any time to yourself? A Pilates or yoga class would be good. If not then daily meditation even if it’s just 15 minutes. I think you’ve been through a lot of physical stress and and probably mental stress too.

I take an iron and vitamin b complex liquid (it’s in a fruity juice) it’s boots own brand. That might be useful. Apart from that just try to eat a normal balanced diet.

I think you just need to give your body and mind some TLC.

How’s your mental health? I had similar issues caused by bad anxiety including acid reflux, weight loss, loss of appetite.

I have Addisons and your symptoms sound v similar.ask for a blood test to be done early morning. It’s v important to rule this out.it’s rare so drs are not likely to think of testing for it. Good luck

My first thought too. Sounds very similar to what my friend went through, she’s coeliac.

Sorry just saw this.

Did the doctor do both blood and camera tests for coeliac? If you can’t eat a biscuit then it might be worth ruling out gluten altogether even May contains and see if that helps.

my coeliac friend had low b12, folic acid and iron. Was basically totally malnourished and her body was constantly inflamed and attacking itself.

I hope you find some answers.

Can you be more specific about what 'can't eat' means? You vomit after eating or eating is painful? The IBS-like symptoms.....is that a lot of diarrhea or constipation? Sorry for so many questions but they may help us answer or give you some helpful ideas.

Have you ever been bitten by a tick?
Some of your symptoms fit Lyme disease

Sometimes coeliac disease can be diagnosed through biopsy only. I’ve heard of that happening twice. So don’t rule it out based on just the usual tests.

Ask for a blood marker screen for rheumatoid arthritis, a friend of mine had similar joint and muscle pains and gastric issues, turned out to be autoimmune RA plus gallstones (have you been tested for gallstones?)

Oral iron tablets are much better tolerated if taken less often. They are traditionally prescribed three times a day, but very few people can tolerate that much! I would suggest taking them every other day and see if you can tolerate that and if you can, try just once a day - that will usually be enough to bring your iron levels up

There's also an iron fish that you can buy - you just add it to the cooking water for veg etc and it infuses iron into the cooking water and hence into the veg as well

Have you had a full thyroid panel blood test including antibodies? Might be that or coeliac.

@Thehonestbadger

Are you seeing a dietitian at your nearest hospital, OP?

@TheThehonestbadger What you describe sounds like fibromyalgia and CFS/M.E, which I have so I know.

There is no blood test. It is diagnosed by a process of elimination.

Book in for a specialist appointment with it. Google fibromyalgia, as I presume you can afford it as you said you had, had private consultations before

You need loads of vitamins, you are having nerve issues due to lack of B vits etc. As others have said. My regime for my ED recovery is thiamine x 2, folic acid, multivitamin/mineral, B vit strong 4 x daily, Calcium/D3 for my bones. It makes the world of difference and helps me keep weight on, have more energy, eat more etc. I don't 'need' it but I also use magnesium oil on my skin to help sleep, and in the bath use epsom salts (same thing)
You can get all this from the GP. You can also get nutrition supplement drinks. They are great if you struggle to eat enough. Ensure compact is one, again you can get from the GP.

If you are low on B12 & Iron, you could eat more red meat?

A couple of other people suggested Addison's disease, that's what jumped out at me too. It's an autoimmune disease which affects cortisol levels. Severe weight loss and nausea/abdominal pain are big symptoms. Do you also have salt cravings, or hyperpigmentation on any parts of your skin?

It's not a well known disease, I wouldn't be surprised if GP didn't think to test cortisol levels.

I hope you get some answers soon OP.

If you’re getting cramps and your BMI is so very low you need to be drinking some quality electrolyte replacement… I’m concerned for your cardiac health.

You can buy your own B12 injections to do yourself. The NHS guidelines mean that your B12 levels need to be in your boots before you can be treated. Look on Facebook B12 groups for more information on self injecting. You also need to be taking at least 5mg of Folic acid to help your body absorb the B12 from your injections. What is normal for one person for B12 & thyroid levels can be critically low for someone else, my thyroid was borderline for years until my hair started falling out & I was retested & my TSH was 11, it has taken me 4 years of taking thyroxine to get it down to 4. Iron levels go hand in hand with B12 & thyroid, if any of the levels are low, you can bet that the rest are, I take Hemaplex plant based iron capsules, which contain 43mg of iron, I also take 1000mg of vitamin C, 500mg of magnesium & a Vitamin B complex tablet every day.

For starters get off hormonal birth control, that is a sure way to mess things up. Have you not had full panel and hormones tested and kidney and liver function and inflammation marker?

I don’t have Helicobacter pylori
I’ve got a dietician apt coming up next week (finally) although I did see one privately and found them pretty useless as whilst their advice sounded solid non of it took into account my having two toddlers (one severely disabled) and desperately little time/ability to to prepping/cooking and generally focusing on my food and diet.
I kept asking ‘what can I eat that’s quick and easy?’ And they were like ‘that’s the wrong attitude to have’ and I was like ‘right well I have an almost 4yo (very high needs) and a 2.5yo and I can’t switch them off whilst I piss around with nutritional yeast 😂

I take famotadine because it gets on better with me than Omeprazole. I’m terrified to come off the contraception because it was SO MUCH WORSE before it. I’m scared to death of my hormones tbh everything seems controlled by them 😭

Could you have gatroparesis ? It's hard to diagnose. It's paralysis of the stomach. Constant nausea, the food doesn't digest well or at all. I live on a low residue diet. Little to no fat and no fibre. It's hard to maintain weight.

TBH the dietician was right. You need to prioritise good nutrition and restoring your health. As things stand you are afraid you’re going to die, are very malnourished and miserable and you’re not fully present for your kids. If getting better involves messing about with nutritional yeast then that’s what you’ve got to do. I am sure your life is very full on and busy, but your life or at least your long term health is at risk and your children need you to be present physically and emotionally.