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

Thanks so much x

@BexAubs20 I was told my thyroid was within tolerance for NHS too along with Iron being 'within tolerance'.

I went privately and he said for some people the tolerance is different, started me on medication for both & all symptoms gone. Interestingly had I been in Scotland apparently I was outside the tolerance levels they accept and would have been medicated by NHS scotland.

Thank you for this. Very helpful x

Lupus?

I have very similar issues as you but am older (52), even down to being born with hip dysplasia.

If you are having gynae issues it is definitely worth asking for an appointment to see a gyanecologist AND checking your full iron panel. I have suffered with gynae issues for decades. Had low iron levels and was told for years by my GP that it was normal to suffer as a woman. In 2022 I opted to have a uterine ablation for my super heavy periods. My gyane ordered a blood test before the procedure. I was called in and told that I couldn't have the op as my ferritin levels were too low at 3 and I would need infusions before they could proceed. I checked back on my records and my GP had let me limp along (feeling like complete shite) with ferritin levels of below 3 for over 4 years - I couldn't even climb my stairs without seeing stars.

Sadly, my ablation failed, in 2023 I asked the gynae for a mri to find out the cause of my excessive pain. Turned out that I have endometriosis and have had it for decades. I was 50 when I found this out and still on a waiting list for a laparoscopy.

Women's healthcare in this country (and probably the world) is a disgrace, we are expected to put up with a myriad of health issues and told constantly that it's to be expected because we are female.

I did say that several times!

So come on then give me some useful advice since you know it all

Thanks glad your now ok

Bit unfair to say " GP thinks I'm crazy "
It looks that they have done extensive tests and ruled out anything sinister. Modern medicine cannot diagnose or treat everything. The list of ailments does seem to be stress induced illness. I'm very sorry you feel this but maybe start to consider how to cope and live with your symptoms.

@BexAubs20

OP, could you ask the gynaecologist about being prescribed the pill, with a view to taking the packs back to back for as long as advised, so that you get a break from having heavy periods twice a month? That must be just awful.

This is what I’ve been taking since 1st feb 1 x per day

Multiple vascular compressions??

You are unbelievable. I'm out.

Or behcets actually come to think of it - although this is more common in certain ethnic groups.
Lupus or behcets are the main differentials popping into my mind based on your symptoms.

I would get a rheumatological bloods screen, then see a rheumatologist. Sometimes biopsy of skin lesions can yield a diagnosis if the cause isn't obvious.

And beware, Mumsnet seems to be obsessed with vitamin d for some reason!

I also thought of ehlers danlos/hypermobility because you mention bruising easily. Unlikely to be diagnosed unless you are fairly "double jointed" though (it's not actually double jointed but to do with lax connective tissues)

Definitely have a look at MCAS. The NHS doesn’t recognise it and the tests are pretty unreliable, but there’s a lot you can do with diet and OTC meds. Also, make sure you have access to your blood results as what the NHS describes as normal or a bit low, can be far out of range for optimum health.

@BexAubs20 I think someone up thread mentioned something they you seemed to suggest couldn't relate to you because 'other people manage do why can't you' but please don't underestimate the power of the mind over our bodies and the impact that past trauma (C-section potentially amongst other things), stress and repressed emotions can have on our physical wellbeing.

The Body Keeps the Score
When the Body Says No
Mind your Body

These are among the many books on the topic of the mind body connection and I speak as someone who has cured themselves of chronic back pain, unexplained leg pain, burning mouth syndrome...the list could go on. They contain strategies to overcome this.

The more you fear and catastrophise that 'there must be something wrong with me' just feeds it. It's like a never ending cycle of new symptoms.

Please do yourself a favour and lean I to the idea that it could be your brain (note I am NOT saying this is in your head!) creating symptoms until you stop and listen. You have nothing to lose by trying.

I had a lot of the symptoms you list for years. For years my GP fobbed me off whilst my Thyroid levels slowly rose and I was told they were normal, took probably around 4 years from onset of symptoms until my TSH was sufficiently high enough to start treatment. I was constantly told i had anxiety. I have the autoimmune version- Hashimotos.

If you believe it’s Auto immune have you considered your diet? If your diet is poor then you may benefit from a diet low in ultra processed foods and eliminating inflammatory foods. Going Gluten Free has been a saviour for me and all of my bloating has gone, Gluten is one of the big inflammatory foods in auto immune disease. Look at the Auto immune protocol diet or paleo diet.
I can’t explain how much better I feel when I clean up the food that I eat.

I would look at your diet firstly. Try to not eat processed foods, have a look at low inflammatory foods. Get back to basics - good sleep routine, sunlight during the day, spend time outdoors.

Do you have any underlying trauma etc that your haven’t processed which could be manifesting itself physically?

Oh I definitely agree. Thanks will look at those books

There is treatment for fibromyalgia

Strange as it may seem have you been checked for gallstones? A lot of those symptoms can be from gallstones x keep getting checked for thyroid as it can change a lot! Good luck x

A person question/something to consider - do you have any breast implants, or have had any cosmetic injections

I raised my eyebrows at this too. Bloated belly is not ascites unless you are very ill with serious heart and/or liver issues.

The first thing I would do is go on the carnivore diet and dump all the oxalate from my body. See Sally K Norton on YT. Revolutionised my life.