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

I'm wondering if it's an absorption problem. Or leaky gut syndrome. Have you had an allergy test? I would try a probiotic with digestives enzymes. There is one call GI total wellness by Natures Plus that gets good results.

Sounds like an auto immune problem to me. They can be difficult to diagnose. My RA took several years to diagnose. I was in my 50's & going through the change.

Did you do CA125 blood test?

Put all your tests into ChatGPT. Ask it to do a comparison table. Put in all your symptoms. Ask it to consider all options. Ask it whether the results would flag issues in other countries like France which has higher thresholds. Ask what further tests you could ask for.

Has your Dr considered an auto-immune disease? Ascites, & rash might indicate auto-immune hepatitis. If you have any yellowing in your skin or eyes, dark urine. A liver biopsy would help

It sounds like you could have an autoimmune disease,or fibromyalgia,or both. I have psoriatic arthritis and fibromyalgia. Neither of these can be tested for by blood tests.
Does anyone in your family have psoriasis?
Psoriatic arthritis and fibromyalgia are painful conditions,and can cause a lot of the symptoms you describe.
It's hard to get a diagnosis.
I hope you get answers soon,and get a treatment that makes life more comfortable for you.
Treating your low vitamin D is a good start. If there is no improvement don't give up. Good luck.

Have you heard of EDS? I had a lot of the symptoms you describe. Had MRI scans, cat scans, ultrasound ds, bloods including every test under the sun. Mostly everything was normal... Tried telling me it was fibromyalgia which did fit apart from the nails, dryness and ulcers so I did a deep dive and found Ehlers Danlos Syndrome. Turns out my whole family has it which also is linked to POTS, MCAS and a whole host of other lovely things. There are 13 variants, 12 are able to be genetically tested for, hyoermobile type - the one I have can't be. There's a great insta account called "@ connective issues" is full of really useful information or feel free to ask

Hi have they checked your plattletts.. Your white blood count. This can make you tired, heavy and more periods. Rash, bruising..
Plus if you've got pain in back and hips maybe send you to pain clinic in hospital they'll sort you out..

Have you had your calcium levels checked? Your symptoms could be indicative of hyperparathyroidism. You would need to ideally have calcium, parathyroid hormone (PTH) and vitamin D tested in one blood draw. The diagnosis is based on the correlation between them.

Thank you for sharing - I am going to Google several things in your post, as it is always helpful to know what works for others. I am glad your treatment seems to be working

Sorry if others have suggested but try the vitamin d patches. I also us b12 patches and iron patches which help

And yet, true to form, OP is back continuing being rude to those trying to help her.

I don’t know if anyone else on the thread has already picked up in this, so apologies if they have, but I didn’t see any test results for coeliac disease. It is a tTG-IgA test. For it to be accurate you need to be eating a couple of reasonable size portions of gluten containing foods every day for 6-8 weeks before it. If you cut out gluten before the test you can get a false negative result.

Actually you can. I bought my B12 injections from Germany to self inject after my doctor left and a new one decided to switch me from every other day B12 injections to once a month.

it’s a vitamin, not heroin. The only reason it’s not pushed more is there are no profits in the injections - Big Pharma make a killing from ineffectual supplements full of fillers.

You likely have a fatty liver too. Pain on right side under ribs sounds like it.

What are people like, honestly?

-Check for basic etiquette; is your comment kind+helpful+necessary.

-If you don't like the OP response to your comment, move on. She is in a tough place and asking for advice. This isn't an invitation for keyboard warriors with chips on their shoulders to escalate their own agendas.

Move on.

Sorry alleged 'grown ups' need reminding of such social norms and niceties.

Hahaha if only the world worked that way … very naive thinking

I haven't read all the post OP. But has anyone suggested an holistic therapy (Chinese medicine) ? my friend had some of these symptoms. CM was her last resort. After a few sessions mainly looking at her life style, mental health any previous trauma.She came away feeling much better. You do have to pay but is it not worth it. GPs study medicine not mind body and soul. A book I can recommend is The Body Keeps The Score: Brain, Mind, Body in the Healing of Trauma. by Bassel van Der Kolk a Boston based psychiatrist.

@Devora13 problem is the OP has been very rude to people

@Anonforthis58
Yeah of course. Best not to take any individual responsibility for changing things then?
We all need to be the change we want to see in the world, unless what we really want is a toxic, hostile world where everyone is looking to be offended and simultaneously scared of words, in which case we're doing great.

@RedRosesPinkLilies I guess when you're feeling like s**t and genuinely asking for advice and some people see fit to respond with ill intentioned personal vitriole it can be hard not to get upset.
I wouldn't have thought anyone genuinely replying with good intentions would want to make the OP worse and add to her stress load.

@Devora13 I did reply with good intentions and OP was rude back.

Or you have an endoscopy and they take a biopsy to diagnose that and crohn's. Caeliac disease can be diagnosed by a withdrawal diet. You stop eating anything with wheat and gluten, milk and other things (I can't recall all of them) and gradually reintroduce foods. If you can tolerate them, fine, if you cannot you don't eat them.

I don't know how easy it is to see a dietician nowadays, but you can try yourself by not eating wheat and gluten and see if it makes a difference.

Crohn's is worse. It makes the intestines bleed. When I first had polymyalgia rheumatica I was very ill. My blood count was 50 instead of 8. My doctor came right away and said the only treatment was prednisolone, but if my insides were bleeding it would kill me, so I had to have all the endoscopies and scans again to make sure there wasn't any bleeding.

I was in nursing, yet I had never heard of any of the diseases I had, except the heart failure.

Have you tried to treat all those symptoms? I have given solutions to some of them, and you may notice a difference right away or in a week for most. They are not all symptoms of a disease. If you eliminated the easiest to treat you will be left with those which won't respond.

That might give you more information. I don't think you should buy over the counter medicines without consulting your doctor. How do you know they are not causing some of your symptoms. How can a doctor know what you have if you don't tell him what you are taking?

It is 14 years since I went into a chemist shop, although I suppose you could argue that online by post is the same.

Since just before the lockdown the only hospital department I have been to is the workshop which makes my walking splints, sleeping splints and hand splints.

I do go to the foot clinic. If I give advice, I am careful to say whether I have tried it or not.

I don't have a mobile phone; I have never had one. I can imagine apps can do more harm than good if they can be so worrying.