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

But these are not your actual results, just whether they fit into lab ranges. You need to request your actual results.

Did it start out of nowhere, or after a virus, even a mild one? I have long term ME/Long Covid and a lot of the symptoms sound very similar. I also have MAST activation syndrome. Both have symptoms in common with Lupus.
I got a lot of help with the ME clinic my GP referred me to. I can function quite normally now, but it is a lifelong condition I think. Well, it is for me.

This is FSH (related to menstrual cycle/peri). Most useful here would be TSH and ferritin.

Well, then I think that's your answer! I'm not sure how you can reduce stress but having experienced similar myself when under stress i think that would be the area to focus on.

just wondered if your Tsh was borderline ?

Oh! Interesting! I hadn’t actually looked at the numbers just the “normal NFA” I will ask thanks

If you can post your actual results here (why does the NHS app do that, it is useless!) then someone can help. Or, post on HealthUnlocked.

You need the test, the result, the unit of measurement and the lab range. I hope you get help, it sounds really tough!

I can’t see a result for your TSH - thyroid stimulating hormone. That’s the base thyroid test. Now, in the UK ‘normal’ is a TSH of 0.0 to 4.5. They don’t treat within that range. However if mine is above 3 then I feel like utter crap. I can’t focus, my body aches, hair falls out etc.
my friend had a TSH of 4 and literally begged her GP for a trial of Thyroxine. He did and it changed her life.

Agree , healthunlocked is really useful for advice and interpreting results and there’s lots of different medical conditions covered

This is it

I wouldn't rule out perimenopause for a lot of those symptoms, tests are rarely accurate for it and you are young but not that young. I was having symptoms from about 39 and HRT was life changing.

I think this is it?

How exactly did they rule out the Crohn's from a stool sample? I'm guessing they tested your calprotectin levels and it was low but it's worth bearing in mind that depending on where the Crohn's is there is a difference in calprotectin. I have small bowel Crohn's and even in a flare I never peak past 300 but others sit there as a baseline and go into the thousands when they flare

I agree. Would it be gynocologist who would prescribe HRT?

Oh I just assumed that was the test. I will query this too thanks!

Never heard of this thank you I’ll look into that

Have they considered Spondylo arthritis - they don't routinely test for this in the UK but my sibling is in Australia, where he has just been diagnosed.
Interestingly my other Sibling has a fibromyalgia diagnosis & is going back to the GP to ask

Can I just point out that the test for coeliac disease will often give a false negative. You need to be having a gluten heavy diet for 6 weeks before taking it.

That's two meals a day containing gluten. My daughter has had three negative tests for it, and biopsies and it's only when she has seen the dietician it's been picked up that she doesn't have enough gluten in her diet for the test to be accurate.

Thanks I’ve posted what is on my NHS app

Have they looked at the possibility of endometriosis. I get all those symptoms.

No, GP can prescribe. Arm yourself with NICE guidelines, research online, there are some great FB groups I'm not sure if I'm allowed to recommend. But it has to be worth a try and if it sorts even half the symptoms the others might well improve anyway.

I have Sjogrens and all the similar problems myself. As others have said, it is very difficult to diagnose and some people are sero-negative.
If you feel it might be this I would recommend seeing someone privately, for example Dr Price in Swindon. I hope you get answers.
I still have similar symptoms but less pain now I am on treatment - the exhaustion is the worst but if you stop working it is very hard to go back and it will not help your mental health.

I would ask for all the full results. The actual numbers not their decision.

Ie iron should be around 100. The nhs only flag it as not normal at below 20. Most other countries treat much higher.

Tsh does seem ok to be fair , healthunlocked is good for advice and people on there have experienced the health issues and have advice on how to help from the right places , nhs don’t seem great when you fall outside of there blood test parameters,

Yes. I just think most of the world has children and jobs and they manage to walk up the stairs without pain you know?