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 have asked today about this I want a scan to check

That seems very reasonable on your GP's part.

Oh you have had children! You didn’t have a C-section did you?

That’s what I was thinking. It’s often a sign of severe liver impairment and not to be ignored.

What are your periods like @BexAubs20 and how long have they been difficult for?

Horrendous periods + bowel symptoms + nausea + swelling +heavy legs/hip and back pain/fatigue are all symptoms of endometriosis. Anxiety really common in women who have it too.

You will need to be very persistent as it takes a lot of effort to diagnose it, which is shocking seeing as 1:10 women have it!

I was 40 by the time I wad diagnosed.

Omega 3 deficiency?

www.vivolife.co.uk/blogs/news/10-signs-of-an-omega-3-deficiency

It might be worth looking into private full thyroid testing - they test more than TSH. TSH can appear normal, yet the full testing show thyroid issues.

This seems a bit like you're not prepared to accept stress is a valid reason to experience awful medical symptoms (clue: it IS).

As a single working parent without any support and running my own business, I experienced very similar unexplained medical issues, went through all the tests to no avail. It was only when I took a holiday it receded a bit and I found a way to manage it.

There's a potential solution to try being offered, is it not worth a try?

You seem set on ignoring the impact of the stress and trying to find another medical reason, is stress not a good enough one for you? Maybe open up your understanding of the human body.

There's a good book: When the body says no, by Gabor Mate. It might help you understand the implication of stress on the body.

I'm not saying that in your case it is 100% the cause for sure, but I think without focussing on it as a prime potential reason, you are missing a big part of the equation and potential solutions.

Yes my last baby was a C section 3yrs ago I’ve not been right since

Sounds like inflammation. So autoimmune or perhaps an allergy? Histamine allergy?

Thing is, the band for thyroid is so wide in the standard tests that everyone appears normal. I did too but experimented with supplementing with a bovine thyroid and feel 20 years younger. Problem is, the NHS doesn't want to pay for it so you have to be your own GP. Grass Fed Beef Thyroid - Ancestral Supplements 180 caps - MorNatural

FWIW you should be aware that endo isn't always visible on ultrasound unless the nodules are large AND the person doing the scan knows how to spot it, which most of them don't. Many gp's are not aware that a 'normal' ultrasound doesn't rule it out.

Sometimes the ca-125 blood test will show inflammation due to endo

Deep pelvic endo does show on MRI but I'm not sure how easy it is to access on the NHS .

I have a lot of these symptoms with endometriosis and allergies. Not coeliac but sensitive to gluten, dairy, nuts, fragrance etc. when I say sensitive I mean severe reactions for days/weeks but not yet anaphylaxis.

Sorry that’s not what I was saying at all. I think you’re totally correct but then I say to myself come on everyone else manages. I’ve been off work since Jan and still don’t feel any better though

I have alot of the same symptoms minus mouth ulcers amd a scabby nose.
i have endometriosis and a family history of IBD colitis/crohns, crohns can actually cause mouth ulcers as its to do with the digestive tract. I also belive i have a weakened immune system.

prehaps its something in your diet that needs cutting ie dairy or red meat/processed foods. It could also be genetics and age also playing a part.

take a multi vitamin.
folic acid for folate also.

also do you smoke or vape??!

Still sounds stressful though - own business, four kids etc. Does your partner help out? How can you change things up a bit?

If it's three years then I wouldn't rule out long covid.

Might sound crazy but I'd actually run this through ChatGPT - if you list all the blood test results in a spreadsheet with dates and talk through your symptoms, it's very useful as a rough diagnostic!

Did you get tested for anaemia and B12?

Some of those symptoms are present when liver function is compromised. Doesn’t always show up in blood tests.

The NHS is usually only looking at the “disease” end of each result - if you have dozens of results that are bottom or top of the NHS range, you will be told there is nothing wrong with you. Realistically, you may have to go for private treatment to get answers - it is likely there are many of your systems not functioning “optimally”. Keep going with the NHS for as long as you can, but there are many many things they do not test for, eg they don’t bother looking at your adrenal glands (unless you have eg signs of addisons - ie disease end of the spectrum). Adrenals are just as important as thyroid. Your thyroid result looks good. You are not crazy, you are ill, probably caused by decades of stress and prioritising everyone else instead of being able to prioritise yourself. You can get well again, but there is no easy fix or magic pill - you’ll have to start with the basics, eg good nights sleep, healthy food, vitamins, gentle exercise or stretching when able. Please try to take care of yourself - see if there’s anyone (family or friends etc) you can start delegating to, eg children, household tasks. Please take this seriously, to avoid further decline. Forget what friends and family say or think, you need to start believing (in) yourself. You will probably need to look for doctors of functional medicine or environmental medicine (the NHS will tell you you don’t need this etc - but the NHS are not helping you to heal). I’ve recently signed up with Optimal Health Clinic in London / online - don’t know yet if they are any good - my private test results so far show hormones all over the place, eg vvvvvvvv low testosterone, adrenals working at minimal level, yeast in gut and so on. Much more to tackle, eg testing for and treating various viruses and bacteria. Best of luck on your healing journey. 💐

Look at histamine intolerance. You have all the symptoms.

I was going to mention B12. I had dreadful symptoms even though my B12 levels were in the normal range (albeit quite near the bottom).

Hi I have no medical knowledge but when I had several symptoms like yours the GP gave me an anti nuclear antibody (ANA) test. I can't see if that is one of the tests that you have had. It might be worth asking if you have had one or trying to see a rheumatologist for a private consultation if possible? My test came back as elevated and I was referred to a rheumatologist and further to that a lupus clinic. On NHS. Conclusions were always inconclusive but the consultant/medical notes said that my symptoms were consistent with a connective tissue disorder. I was given amitrypyline and hydroxchloroquine (plaquenil) and regular blood tests and monitoring. My Ana levels decreased over time but never were recorded at 'normal' levels, always slightly elevated. A doctor said that this might be my normal level. Eventually I got better so I do not have lupus or an autoimmune disorder but for several years was regarded as possibly having an undiagnosed connective tissue disorder. I discharged myself from the lupus clinic eventually (I think I was part of a research project hence the ongoing monitoring.) I recovered over 2-3 years and this was c.15 years ago. I think it was a severe post viral syndrome, perhaps exacerbated by stress and sleep disturbance. The GPs I met were sceptical or not sure what to do as the symptoms are potentially attributable to so many possible causes. It was a family friend hospital consultant who suggested the ANA antibody test, but the rheumatologists were as helpful as they could be.

0.0 is in no way normal. That is absence of TSH. Mine was 0.0 and I was a raging hyperthyroidism sufferer. My T3 and T4 were off scale, hence TSH 0.0. I was put on a huge dose of carbimazole and betablockers.