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Original poster

GP thinks I’m crazy!

616 replies

BexAubs20 · 28/03/2025 09:10

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

OP posts:
Thread gallery
36
Oldermum84 · 28/03/2025 10:26

Fatty liver disease?

Kitchensinktoday · 28/03/2025 10:27

You mention a C-section - an anaesthetic can really deplete your B12 levels

Original poster
BexAubs20 · 28/03/2025 10:27

IOSTT · 28/03/2025 10:23

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. 💐

Wow that’s so interesting thank you! I will look at signing up to them too

OP posts:
Original poster
BexAubs20 · 28/03/2025 10:27

Kitchensinktoday · 28/03/2025 10:27

You mention a C-section - an anaesthetic can really deplete your B12 levels

Oh wow I didn’t know that! Thanks

OP posts:
mynameiscalypso · 28/03/2025 10:27

I have had quite a lot of the same symptoms and have just been diagnosed with MCAS. I do also have other autoimmune conditions too (psoriasis, psoriatic arthritis) and there was a question mark as to whether I had fibromyalgia too but a lot of the symptoms seem to be responding to MCAS treatment which suggests that it’s the latter rather than the former.

Original poster
BexAubs20 · 28/03/2025 10:28

Oldermum84 · 28/03/2025 10:26

Fatty liver disease?

They thought this as my ALT came back high but when re tested was normal again

OP posts:
Original poster
BexAubs20 · 28/03/2025 10:30

Higgeldypiggeldy35 · 28/03/2025 10:25

Look at histamine intolerance. You have all the symptoms.

Funny enough I do take Claritin if I start sneezing/ itching eyes which does seem to help generally. Only other thing that helps me is sunshine and hot water. Going to the spa for mothers day and it has an outdoor hot tub and sauna I can’t wait as that along with the relaxing really does help!

OP posts:
Original poster
BexAubs20 · 28/03/2025 10:31

mynameiscalypso · 28/03/2025 10:27

I have had quite a lot of the same symptoms and have just been diagnosed with MCAS. I do also have other autoimmune conditions too (psoriasis, psoriatic arthritis) and there was a question mark as to whether I had fibromyalgia too but a lot of the symptoms seem to be responding to MCAS treatment which suggests that it’s the latter rather than the former.

Interesting thanks I’ll ask about that. It’s like playing detective isn’t it

OP posts:
Cognacsoft · 28/03/2025 10:32

@BexAubs20 my dil had CSE when the c section results in cells being deposited that cause endometriosis. She had pain, fatigue and awful periods. Eventually she had a hysterectomy privately as the NHS said she was too young ( mid 30’s).

Wishiwas24again · 28/03/2025 10:33

You can buy b12 in a spray or drops which are easily absorbed , nhs for me says my vitamins are ok whereas for myself I need them to be higher than they suggest , I’d probably improve my b12 if I was you but I just suggesting as I really don’t know , not surprised your stressed , my mental health is definately worse since my symptoms developed 💐

CrotchetyQuaver · 28/03/2025 10:34

My money would be on thyroid issues, but TSH is not the full picture. You need to results for FT3 and FT4 as well.
youll probably be best finding a private doctor who will test for the lot and take it from there. NHS thyroid diagnosis is shocking, there's probably millions of fat depressed middle aged women out there with digestive problems, horrific periods, skin problems and all sorts of other crap wrong with them on their knees trying to carry on as normal. Weeping tears of frustration when a GP tells them it's all in their head. I was one of them once. Now I take T3 and a host of vitamins and have got my life back.

Original poster
BexAubs20 · 28/03/2025 10:34

Wishiwas24again · 28/03/2025 10:33

You can buy b12 in a spray or drops which are easily absorbed , nhs for me says my vitamins are ok whereas for myself I need them to be higher than they suggest , I’d probably improve my b12 if I was you but I just suggesting as I really don’t know , not surprised your stressed , my mental health is definately worse since my symptoms developed 💐

I am qualified in the injections so I’ll just give myself one see if it helps thanks

OP posts:
Fruitytutti223 · 28/03/2025 10:35

Ah!

Well thats potentially a few things ticked off your list..

Potential adhesions from c-section:
Severe back/ hip pain
Bowl issues

Potential Posture from pregnancy…
Pain under right side ribs (I also went for similar after my first child - thought i had lung cancer. No I had the slightest of scoliosis on one of the spine things. Had it corrected by physio)

Potential Nerve damage from c section epidural…
Heavy legs
Random body twitches

Damage to transverse abdominus - potentially postural/ potentially adhesions/ potentially just needs the correct physio
Acotites- swollen tummy
Severe back/ hip pain
Bowl issues

I would ask for ultrasound to check for adhesions and also get your pelvic tilt / whole body assessed by a physio.

Tinysoxxx · 28/03/2025 10:35

Which antibodies did they test for?

Original poster
BexAubs20 · 28/03/2025 10:35

CrotchetyQuaver · 28/03/2025 10:34

My money would be on thyroid issues, but TSH is not the full picture. You need to results for FT3 and FT4 as well.
youll probably be best finding a private doctor who will test for the lot and take it from there. NHS thyroid diagnosis is shocking, there's probably millions of fat depressed middle aged women out there with digestive problems, horrific periods, skin problems and all sorts of other crap wrong with them on their knees trying to carry on as normal. Weeping tears of frustration when a GP tells them it's all in their head. I was one of them once. Now I take T3 and a host of vitamins and have got my life back.

I will ask about these but yes fat middle aged woman on her knees describes me perfectly lol

OP posts:
Original poster
BexAubs20 · 28/03/2025 10:36

Fruitytutti223 · 28/03/2025 10:35

Ah!

Well thats potentially a few things ticked off your list..

Potential adhesions from c-section:
Severe back/ hip pain
Bowl issues

Potential Posture from pregnancy…
Pain under right side ribs (I also went for similar after my first child - thought i had lung cancer. No I had the slightest of scoliosis on one of the spine things. Had it corrected by physio)

Potential Nerve damage from c section epidural…
Heavy legs
Random body twitches

Damage to transverse abdominus - potentially postural/ potentially adhesions/ potentially just needs the correct physio
Acotites- swollen tummy
Severe back/ hip pain
Bowl issues

I would ask for ultrasound to check for adhesions and also get your pelvic tilt / whole body assessed by a physio.

Wow! Thank you for this! I will look into these for sure

OP posts:
Original poster
BexAubs20 · 28/03/2025 10:37

Cognacsoft · 28/03/2025 10:32

@BexAubs20 my dil had CSE when the c section results in cells being deposited that cause endometriosis. She had pain, fatigue and awful periods. Eventually she had a hysterectomy privately as the NHS said she was too young ( mid 30’s).

Poor thing! I’m going to check for this too.

OP posts:
melisma · 28/03/2025 10:39

Like others my first thought was Sjogrens syndrome too.

AlteredStater · 28/03/2025 10:39

OP if I were you I'd go gluten free, even though you're negative for coeliac. Gluten can really be a trigger for a lot of things. Worth the experiment, but it has to be scrupulously gluten free.

Sunnysideup999 · 28/03/2025 10:40

You can get private test for Lymes disease. Not sure they do it in the nhs but could be worth asking .
how was your kidney function? I have a lot of these symptoms and my GP kept saying my kidney function was ‘fine’ - when I asked for the numbers it really wasn’t fine!

FizzPlease · 28/03/2025 10:41

It sounds like your vitamins and minerals are totally out of whack. Do you take a probiotic for gut health? Look up gut health and your skin issues and stomach bloating. What about magnesium? Are you taking K2 with the vitamin D?

I had very similar symptoms years ago (except the skin issues) and my neurologist said I had the "probable early onset of MS" (awful recurrent optic neuritis and loss of eyesight in 1 eye (temporary but bloody scary)). Despite this, all of my bloods (except inflammation markers which were high) were normal.

I took my health into my own hands and never looked back. Look up mineral imbalance, the importance of magnesium, etc. I was convinced my thyroid was not right (the NHS tests are basic and fairly strict parameters for treatment). Anyway, I haven't been to the doctors in years, am the fittest and best health I have been since my 20's. I am a completely different person. I follow Dr Berg mostly and know what supplements to take and what foods to eat for optimum health.

Good luck to you. You are young (I am 54, firmly in peri-menopause without many symptoms) and you should not be suffering from that massive list you have posted.

Cerealkiller9000 · 28/03/2025 10:43

I had an illness. Kept going to the dr. They kept telling me it was mental health but they’d send me back saying it wasn’t.

I went back and forth for years. I eventually got diagnosed with a stupidly rare disease and then a vanish rare one in which I’m the 158th person ever diagnosed ever….you can imagine how long that took!

however I lead a normal life.

Helterskelterthroughtheday · 28/03/2025 10:44

mynameiscalypso · 28/03/2025 10:27

I have had quite a lot of the same symptoms and have just been diagnosed with MCAS. I do also have other autoimmune conditions too (psoriasis, psoriatic arthritis) and there was a question mark as to whether I had fibromyalgia too but a lot of the symptoms seem to be responding to MCAS treatment which suggests that it’s the latter rather than the former.

My DC's MCAS symptoms began post covid, was that the case for you? I suspect a lot of what's still being called long covid will turn out to be MCAS. My poor DC spent a lot of time in hospital and has endured invasive procedures to treat a condition they didn't actually have. Now on MCAS treatment and finally feeling so much better. Hope you continue to improve too Flowers

highfidelity · 28/03/2025 10:44

Outnumbered99 · 28/03/2025 10:06

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.

This. Will also echo others whom said that you need your actual numbers because I know from experience that GPs don't always read bloods, particularly female blood panels accurately. The fact you're having two periods a month is not usual. A swollen tummy could be changes to your hormone levels as there are millions of receptors in the gut. Digestion issues and bloating is incredibly common during perimenopause.

Once menstruation has started, perimenopause can start at any age. NICE is emphatic that HRT should be prescribed based on symptoms, not bloods. Indeed, all a blood test will do is give a snapshot of the moment the blood was taken, and as hormones (as well as other levels) are constantly in flux, not just over a 24 hour period but over the month, a blood test isn't really accurate.

With regards to your dry nose, speak to the pharmacist, there are excellent saline nasal sprays that will help whilst you're waiting to get to the root of the problem.

1stTimeMummy2021 · 28/03/2025 10:45

@BexAubs20 Could it be endometriosis, I'm just waiting for confirmation of it for me, I have fibromyalgia too but the pain and periods made me think endometriosis, the fatigue with it is unreal.