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

Emmm jumping to conclusions much?!

No not IV as you need to do this in a CQC registered practice now. Yes medically trained (dental therapist) but I don’t know much about hormone levels etc as never need that for work. I don’t self treat, hence my tests, medication etc through the NHS. I dont even practice aesthetics at the moment as I’m too ill it’s been years since I did, but yes fully qualified in intramuscular injections. Do not appreciate the rude mean comments.

Yes that’s what I’m thinking too

Very true

heavy, irregular periods 2 x per month and fatigue

This makes me think endo. I have it and the tugging sensation you describe is exactly what I had. It was because my ovaries were pinned down by it. This can only be diagnosed by a laparoscopy though. And remember its inflammatory hence the pain and heavy leg sensation.

Id go to a private ultrasound place for an overall well woman scan initially. Locally I can get a transvaginal scan with results there and then for £180 approx. So worth it. They can then refer to an NHS gynaecologist from there to explore endo.

Good luck

Yes k2
no to probiotics but I have in the past so will get some more

Have you been tested for Sjögren's syndrome?

Honestly. Everything you've described could be sorted out with diet. Gut health is very important for all kinds of problems. What people think is a healthy diet actually isnt. I can almost promise if you changed your diet most, if not all your problems would go away. Look for Eddie abbew and listen to what he has to say

I would ask to be referred to a rheumatologist, you can have a negative ana panel and still have an autoimmune condition, but the gp will refer to absolutely everyone other than the one specialist who deals with this kind of thing (my own experience!). Have you also had an MIR & X-ray to rule out physical issues?

Need referral to rheumatology- bloods thyroid b12 crp this sounds like psoriatic arthritis or some form of immune disorder, ask for a second opinion

I’m so shocked at some of these comments

1. i looked into ascitites when one of my liver markers was high. That’s when i wrote that on my notes which i have copy and pasted. I have said above I don’t think it is this and just a swollen tummy. Not sure why people are obsessing over this.
2. i am just classed as “over weight” for my height. Telling people to loose weight when you haven’t seen them or know their weight and telling them to get fat loss injections is very dangerous
3. if you have nothing nice / helpful to say please scroll on by! Especially the “doctor” who’s glad he’s not a GP I mean wtf 🙄

Thanks I totally agree and follow a Mediterranean diet but will look at this guy thanks

POTS and MCAS (often co-occur) were the first things that came to mind looking through the symptoms. POTS is a well-established, measurable thing, MCAS not so much - the NHS doesn't even formally recognise it.

I'm pretty sure I have MCAS as I'm plagued with allergies (I reacted to almost everything on the list apart from cats (hooray) and dust mines (initially the prime suspect), rashes, boiling hot and sweating horribly within a minute of walking around and shivering within a couple of minutes of sitting down, horrific night sweats since I was 22 (wringing out PJs level at times), dry and itchy eyes, dry lips, chronic reflux, skin tears at the slightest thing, covered in bruises with no idea where they come from, random 'internal' itch episodes - like my blood is on fire - in my hands and feet that have been so severe at times that I've been jumping up and down (was sent to secondary care for that, nothing came back in tests so they just shrugged and gave me stronger antihistamines) etc etc.

I've seen the GP about individual things over the years but things tend not to be looked at as a whole. They were good with testing when I queried if there could be something autoimmune going on but ANA was negative and no RF either.

A HCP commented on my high HR recently. I said it's always been like that and presume I have POTS. Unbeknown to me she spoke to my GP about it who asked me to book an appointment, so I'm being referred to cardiology for a tilt table test which was a bit of a surprise. I mentioned the possibility of MCAS but he said let's investigate the possibility of POTS first.

You're not crazy. It can take years and years for many conditions to be diagnosed. And even if you never get a clear explanation for why you feel the way you do, it doesn't mean it's in your head.

Are you hypermobile? if you are you should look at the associations between EDS and Hypermobility syndrome and its comorbidities around fatigue and inflamation across the body

Just an antibody test

Perfect thanks so much!

I just looked that up and having some issues there and I fit most of the criteria .

One thing I noticed, that has interested Me greatly, is that I have never once cried a single tear, ever. Mum took Me to specialists and they were baffled.
The tear ducts are not, and never have been, blocked
I hated it as people thought I was pretending to cry when I was actually wailing. I would love to feel a tear.

I wouldn’t particularly say so but when I was born my mum said there was something wrong with my hips and I needed to be in a cast or something

Thanks ❤️

Yes to xray and MRI on my upper/ torso when I was pregnant as went in with excruciating pain and had to be given strong pain meds

@BexAubs20 I think people are ‘obsessing’ over ascites because it’s a very serious condition which you are listing without understanding

I’ve just recovered from ascites as I have stage 4 ovarian cancer and am having chemo/ permanent abdominal drain. It’s a horrible horrible condition. You get breathless on mild exertion, can’t eat because your abdomen is already full of fluid. It takes using your arms to propel your body over in bed, rather than rolling over. Sitting for any length of time becomes uncomfortable.

It’s just typical of todays day and age to self diagnose serious conditions and no wonder you feel the GP is not taking you seriously if you walk in spouting self diagnoses that you don’t understand.

I am really irritated by your OP

Another hallmark of EDS is velvety stretchy skin . The hip thing from when you were a baby suggests hyper mobility. Have you had any dislocations?

Your post makes me so angry OP because it demonstrates, yet again, that so many HCPs are still clueless about peri and meno. There is NO reliable test for peri-menopause because hormones fluctuate so much during that time. NICE guidelines are that if the patient presents with sufficient symptoms to suggest that they are peri-menopausal or menopausal, they should be offered HRT. Blood tests should only be used to rule out other causes. I had the vast majority of the symptoms you describe and HRT fixed most of them. Please go back to your doctor, armed with the NICE guidelines and perhaps a diary of your symptoms (the Balance App can help with that) and insist on HRT.
Best of luck OP x

Ask for referral to immunologist or rheumatologist. There are lots of obscure autoimmune diseases that produce a raft of strange symptoms.

@BexAubs20 i got negative result too for gluten. i have cut it out regardless and have gone from 8 transform a day to a couple now and again.

Have they done an MRI for MS? With the twitching, fatigue and leg pain is a possibility.

Agree with others Lupus seems extremely likely but so difficult to diagnose.