GP thinks I’m crazy!

[BexAubs20]

Ok so I’ve been having symptoms for years now and been tested for all kinds of things via bloods, stool and urine samples. The only thing that came back positive was low vitD which I’ve been taking daily for months and still don’t feel any better. I’ve got a tugging type sensation in my lower tummy either side of my hips as well as the following symptoms; Headache
Nausea
Severe back/ hip pain
Rash on face & under breast & chest & arm, back of knees on hips and eyes
Bowl issues
Dry sore bloodshot eyes with rash on eyelids
Phlegm
Depression
Anxiety
Fast/ irregular heartbeat
heavy, irregular periods 2 x per month
Pain under right side ribs
Heavy legs
Mouth ulcers
Bruise easily
Dry nose with scabs
Dry sore lips
Random body twitches
Toenails peeling off
Brittle fingernails
Dry hair
Twitch under right eye
Acotites- swollen tummy
Fatigue
Aching joints
I’m at my whits end! The fatigue is the worst. I’ve had to give up work. I wake up exhausted and I’m struggling to carry out daily tasks. Even climbing the stairs hurts! I’ve asked for a gyno referral but apart from that I think they have ruled out everything else. I’m 37 so poss peri menapause but the test they did came back negative for that too! Does anyone else have these symptoms and what was your diagnosis? Thanks

low vitamin B12 & folate cause all the symptoms listed

I was thinking Sjogrens as well and yes, very tricky to diagnose.

you really need to rule out any gynea issues - I had a lot of those symptoms and had two massive benign ovarian tumours (and also low vitamin d and b12 - I now inject my own b12)

Normal as in the GP said they’re normal? Because 30 is classed as “normal” when really it needs to be above 60.

@BexAubs20 does your family have a history of autoimmune diseases??

Hi,
sounds terrible. Do they know whats causing your Ascites? Assuming they’ve scanned your liver with the rib issues and ascites?

You’ve lost all credibility with this post.
Doctors have an expression “she enjoys I’ll health”.

@Wibblywobs OP doesn’t have ascites. She thinks it’s the same as having a fat tummy.

What an evil thing to say to a mother of 4 children shame on you! I hope admin see this as they have deleted similar cruel comments

No scan as of yet

Sorry if this has already been asked and I've missed it, but you don't have breast implants do you?

Coeliac disease is not diagnosed by a stool test, it’s a blood test to check for specific antibodies then if that is positive an endoscopy/ biopsy to confirm. From the results you shared I didn’t see the test for coeliac so it would be worth checking if you have had it and then requesting it if not. Symptoms go way beyond stomach issues and can include a skin rash. There’s lots of useful information at the Coeliac Uk website, including a self assessment tool.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/?&&type=rfst&set=true#cookie-widget

Potential gluten/dairy/other food intolerance? Might not explain all but could explain some of those symptoms.

FODMAP diet might be a good thing to look into.

Good luck OP x

The point being that she doesn’t have ascites!
OP has googled swollen tummy and come up with ascites. Ascites is an end stage condition. Which she doesn’t have.

PS OP if there’s a possibility of coeliac disease do not go gluten free prior to having your biopsies taking as it can affect the results. You want all the gluten filled food up to the point you’re told to stop eating it. Even if it’s making you very ill.

But yes, coeliac can cause these symptoms too (save for two periods a month, though it can have a funny effect on your menstrual health). It can cause malabsorption too so no matter how many supplements you take you’re not absorbing nutrients properly through taking them orally.

OP, if you have done your “research “ aka google, you should know that ascites is a serious condition that is usually a terminal illness. So why don’t you stop the drama?

Think she needs a diagnosis first otherwise you risk masking your symptoms. Rashes take pictures, write a timeline different symptoms. I have multiple AI that probably started as early as late twenties then disappeared then again came back around menopause mid 40’s. The thing that kicked it off for me is I fractured my ankle eventually went back to work felt really unwell ended up in A&E picked up kidney disease, then sjogrens, low vit D & treatment caused fractured pelvis & ribs.. having worked in NHS I was shocked how flippantly mainly male doctors treat women.

Reading all symptoms together my mind first went to Lupus or MCAS - something along those lines. Could also all be perimenopause like you say. Did they do a day 3 oestrodiol test? I know your FSH etc were normal but I started with low oestrogen and felt broken constantly and my FSH was normal.

Alternatively maybe we need to not look at everything together. A lot of the symptoms could be down to vitamin/mineral deficiencies, salt imbalance. Alternatively there could be a food allergy issue so I’d check vitamin/mineral and salt levels and if all okay consider an elimination diet to see if that makes you feel any better.
Alongside that you should try to figure out the irregular heavy periods, bloating and tugging sensation so check for endometriosis, fibroids etc.
Are you able to share an image of the rash? Hope you get sorted.

Consider histamine intolerance, have a look at low histamine diet, it's quite restrictive but worth trying for a few weeks before reintroducing foods.
Sarcoidosis is another suggestion, it can affect multiple areas of the body.
Make sure you are looking after yourself, good diet, well hydrated some exercise (joints can hurt if you don't move them), just stretching is better than no movement. Most importantly do something you enjoy every day- not just the things you have to do, stay connected with others.

Are you on any medications? Both prescribed and otc.

Lymes?

Awesome news. What's the treatment? And please don't say exercise as that has recently been debunked and is now considered harmful to the majority of sufferers.

what is the ME clinic please? and would you mind sharing how they diagnose the MAST? My GP looks at me blank when I gave the evidence around that and knowing it is hard to diagnose no idea which specialty to ask for a referral for. Thank you!

Has hyperparathyroidism been considered? It may be useful to obtain blood tests for calcium and parathyroid hormone levels.