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

It does sound like further investigation is needed, can I ask if your rash is itchy and if you have gained weight recently. I had some of those symptoms myself and from a blood test my sugar levels were elevated (24) and I had a fatty liver, I was also diagnosed with type 2 diabetes. I want to reassure you that I am now ok, with treatment I am in remission and all blood tests are normal so even if it is this it can be treated and you will feel better. I only ask as fatigue and pain under my ribs plus rash were among my symptoms. An endocrinologist maybe able to help you if it is an immune disorder of some type.

Unless you have cirrhosis, congestive heart failure, pancreatitis, kidney failure, or late-stage cancer, please stop suggesting you have ascites.

I'm sure it's already been mentioned but have you tested negative for Lyme disease.

Why are you repeating these questions? I’ve told you I struggle and get help from family. What concern is it of yours?

How do you know I don’t?! I’m undergoing investigations clearly! So please stop suggesting I DONT have any of those things! Unless your medical professional who has examined someone your not in a position to say otherwise.

Given the wide range of symptoms you're experiencing, there are several other potential conditions that it could be, conditions like lupus, rheumatoid arthritis, and other autoimmune diseases can cause a variety of symptoms including joint pain, rashes, fatigue, and gastrointestinal issues. It could also relate to issues with thyroid function or other hormonal imbalances as the symptoms for this includes fatigue, irregular periods, depression, and anxiety. While you've been addressing low vitamin D, other deficiencies (such as B vitamins, iron, or magnesium) could contribute to symptoms like fatigue, muscle pain, and neurological issues. Pain under the right side ribs, swollen tummy (ascites), and fatigue could be indicative of liver or kidney problems so please get checked out.

Bit rude 🙄 You too need help love 🙄 You’ve self diagnosed yourself with a serious condition then back tracked to oh I just meant swollen tummy. Well say that then, then posters wouldn’t be tripping over themselves trying to help you with your serious condition that you haven’t actually got.

Your self injecting comments are ridiculous too. You can’t just inject B12 .. it doesn’t really work like that. Sounds like you’d like to know what you’re talking about but actually don’t.

You have my sympathies, I’ve been struggling with thyroid and probably ibs c for 12 months and I feel like I’m going mad sometimes and my gp just got my Tsh down then inspite of continuing symptoms offered me anti anxiety meds!
im seeing a different gp next week as I’m sick of it , I guess I’m lucky as my weight gain and constipation are my only symptoms but that enough for me and my kids are older so I don’t have that responsibility , next stage might be going private , hope you find someone who listens and helps soon 💐

Because I actually know how to interpret your test results, sweetheart 🙄

You will at least have an answer and there's are potential comorbids they need to be aware of. I would ask to see a rheumatologist.

Another condition if it's not been suggested here is antiphospholipid syndrome as it's literally a cause of everything.

I have rheumatoid arthritis and have a lot of the same symptoms as you alongside the severe joint pain - it sounds rheumatic. You can have seronegative arthritis, so low CRP and rheumatoid factor don’t necessarily mean there’s nothing wrong! Ask for a referral. I was also told for years that there was nothing wrong with me, it’s miserable, hugs to you.

My word! You are one angry person!

If your vitamin D was low, you need a proper loading dose of it, not like just some vitamins from Tesco. As per:

• 50,000 IU once a week for 6 weeks (300,000 IU in total).
• 40,000 IU once a week for 7 weeks (280,000 IU in total).
• 1000 IU four times a day for 10 weeks (280,000 IU in total).
• 800 IU five times a day for 10 weeks (280,000 IU in total).

See here: https://cks.nice.org.uk/topics/vitamin-d-deficiency-in-adults/prescribing-information/vitamin-d-supplements/

I had most of the symptoms you describe (except for some of the GI ones) when I was vitamin D deficient. I could barely walk some days because I had such horrible joint pain and I was so tired, I was like crawling up the stairs. I could barely function. I truly thought I had cancer and was going to die. Funny enough, I actually have cancer now and it’s the closest I’ve felt to being that ill. I felt mostly normal after about 4-5 weeks on the dosing schedule above.

Ooh blimey @mindutopia get ready for a roasting .. OP knows it all and ‘I am qualified in vitamin injections myself’ so doesn’t need any further help 😉

With sjogrens 30% of patients can be seronegative, that means no sign of antibodies in blood. The rash on eye lids could be rare disease called dermatomyositis, lots of people went through years before getting diagnosis, could be Mixed connective tissue disease which can give you signs of lots little bits of other AI but nothing to give one overall disease. These are complicated diseases both support groups on Facebook will give you options if you ask the questions on there.

If you had any of those things, it would have been picked up on one of the many blood screens you have had. Ascites is obvious on a clinical examination. If your GP had any concern that you had ascites, you would have been referred. A swollen abdomen and ascites are not even remotely the same.

Your rudeness to @RedRosesPinkLilies after she told you she has ovarian cancer was despicable. I am glad it has now been deleted.

Another vote for a potential connective tissue condition here. Perhaps ehlers danlos or similar hypermobile spectrum condition with pots (or other autonomic dysfunction) and mcas. Would explain the pain, gynae and digestive issues and allergic type reactions.

https://gptoolkit.ehlers-danlos.org

https://www.hypermobility.org

”Clicky” unstable hips in babies can be a sign.

Good luck OP, it sounds really tough xx

Think you need to speak to your GP practice manager, I get my actual levels, I tend to pick them up quicker than the GP so if there was a worry I would ring them.

Endometriatus? Often misdiagnosed.
Typical to suggest 'its' all mental' when a woman is in pain. 💐

They don’t diagnose coeliac from a stool sample. Sorry if someone has already mentioned this. They will take bloods to check markers and you’d get a hospital referral where they’ll do an endoscopy and take samples from small bowel and poss stomach under sedation.

Sounds similar to my child’s symptoms pre diagnosis though,

They said it was in your head ?

What's the face rash like? Could it be lupus?
For ease, here is what I got when I asked chatGPT about overlap of your symptoms with lupus.

Symptoms:

• Fatigue (extremely common in lupus)
• Joint and muscle pain (hip, back, and leg pain could be part of this)
• Skin rashes (butterfly rash on the face, but lupus can cause rashes in other areas too)
• Mouth ulcers
• Photosensitivity (if the rash worsens with sun exposure)
• Heart and lung issues (fast/irregular heartbeat, pain under the ribs could be related to inflammation like pleurisy or pericarditis)
• Kidney involvement (swelling in the tummy, potentially linked to lupus nephritis)
• Dry eyes/mouth (could also indicate Sjögren’s syndrome, which often overlaps with lupus)
• Raynaud’s phenomenon (cold hands/feet, circulation issues—didn’t mention this, but worth noting)
• Bruising easily (could be due to platelet issues or clotting problems seen in lupus)
• Hormonal irregularities (heavy/irregular periods are not a classic lupus symptom but can be affected by autoimmune conditions)

Next Steps:

• Have you had ANA (antinuclear antibody) testing? It’s the primary screening test for lupus.
• Anti-dsDNA and Anti-Smith antibodies are more specific lupus markers.
• ESR/CRP (inflammation markers) and complement levels (C3/C4) can help determine disease activity.
• Urinalysis and kidney function tests to check for lupus nephritis.
• Rheumatologist referral is essential—they specialise in autoimmune diseases.

It's a bit of a reach but I have had about half of the things you listed and I was recently diagnosed as type 2 diabetic and a fatty liver.

I didn't have any urine frequency or excessive thirst which are often listed as common symptoms of diabetes.