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 had exactly the same symptoms as you and the Dr kept saying my thyroid function was normal. I looked into it, and in UK the thresholds for treatment are way lower than other countries. In the end I begged to have the Levothyroxin and the doctor relented. I haven’t looked back and all symptoms disappeared within 3 weeks! If your levels are borderline for under active thyroid, definitely get back to the GP.

Op you need to research your blood results (numbers) uk nhs are guided by ( nice guidelines) so your numbers could be in range but on the low side, so B12, iron, ferritin, thyroid, magnesium, all could be on the low side,
Gps will say , all in range?? So please compare your numbers then check these numbers against symptoms you'll have to right this all down and go back to GP with your evidence and ask for a second opinion

Sounds very similar to me and I have PCOS and PMDD so hopefully the gynae referral can help you get to the bottom of this!

Are you obese with a very poor diet and lack of self care?

🤷🏼‍♀️
so many experts.
why do we need doctors?

As I said before, I’m glad I’m not the OPs GP. She’s a heartsink patient.
Heartsink when they see her name on the surgery list.

My daughter had/has many of your symptoms. She has Lupus. She had to suggest it as a possibility to the doctors, because they seemed clueless, even though she had the classic lupus rash on her cheeks. It's worth asking.

I was like you, ferratin was checked and came back at 22 and was classed as normal (anything above 20 is normal). However after looking into it anything under 60 is considered low. I would ask for figures on your test results to see if there is anything you are on the low side for.

Your GP sounds awful. Even if he can’t find out what’s wrong with you, his attitude sounds very unsympathetic. Have you only seen this one GP? You are quite within your rights to request any GP at your practice and I’d suggest seeing a female one. I’m afraid there is a certain type of male doctor who doesn’t take women’s chronic health problems seriously and will label us as neurotic if they can’t diagnosis us. I can’t believe he would tell you not to bother getting a diagnosis for something “because there’s no treatment”.

hi I have fibromyalgia and I take vitamins d and iron as have low ferrite levels. It is so frustrating but see if you can be referred to your local chronic pain clinic- the majority are brilliant and really help.It doesn't go away but it can be controlled so that life is manageable and enjoyable again.

Yes, yes and yes. Same as you symptoms for a while. Doctors threw me on antidepressants, kept upping the dose until one day I literally stopped them. My mental health did not deteriorate when I did this.
They kept saying low vitamin d aswell so been taking that daily. Last time I went to the doctors they said you have a history of depression..... I said no I don't you out me on antidepressants a year ago that I took for 4 months then suddenly stopped and I feel no better or worse on or off them. I jave also birthed a dead baby so I know what depression feels like and this is not it.
I even had a private blood test as I am adamant there is something, all bloods fine. Told the doctor I feel like I'm going crazy, I used to easily do 30k steps daily, now walking the dog is hard work. My kids went on holiday with their dad's family for 2 weeks..... and I was still absolutely knackered and in pain.
After that little speech the doctor said it sounds like fibromyalgia or chronic fatigue syndrome, so keep a journey including food, activity, how I feel physically and mentally and see her again in 4 weeks. Week 4 is next week, so I would suggest that journey everything and take that to them

I'm really struggling to read your blood results

Your Vit D is 48? - It needs to be around 100 to feel well - I saw your pic of the vit d supplement you take - but the photo was poor - but I think I foudn the same one online - is it a white tablet? I was always told vit d - should be in an oil based soft gel - something like the one below:

https://www.natursupps.co.uk/products/copy-of-vitamin-d3-4000iu

I couldn't see your b12 level - but your symptoms (lots of them) are linked to that - and for myself - I felt a difference from my first shot .. although I needed far more than loading doses and regular jabs to feel better. Health unlocked is a great place to get info. What was your b12 level?

They don't test for lupus as a standard. Definately worth asking. You mention a rash? What type is it?

Call the doctor and ask them what the actual number was on your ferritin (iron stores) if it’s under 50 even though they say it’s ’normal’ it’s not and for you to feel ok needs to be much higher (100) - I was the same, close to being written off with chronic fatigue and actually getting this iron up to a decent level I felt normal again.

What a lovely and helpful response. 👍💞

I have not RTFT but from your first post, this is screaming liver issues to me.

My husband has liver cirrhosis secondary to haemochromotosis, a genetic condition that causes iron to be stored in your system permanently. As you get older it overloads in your system before being dumped into organs. Liver, pancreas, joints, heart and lungs then eventually skin. It causes all manner of symptoms, many of which you've mentioned. The heavy periods could be treating this to a certain extent - has your transferrin saturation been tested? Do you have any Scottish or Irish heritage - Haemochromotosis is known as the celtic curse due to its prevalence in Scotland and Ireland.

DH drank heavily for years, (sober for 2+ years) but the damage is done and his liver function is significantly reduced, this is known and diagnosed but his liver compensated well so if he has standard liver function tests, they come back as in the normal range.

Ascites is VERY serious and is a sign your liver is not functioning correctly. Upper right quadrant pain can also be liver. Unfortunately liver issues are not understood well by some GPs, and if the LFTs come back normal they will disregard other symptoms.

Have you been tested for different autoimmune diseases? Any chance it can be something like Lymes ?

Have you had / done an allergy test? I had some of your symptoms and it was a allergy to dairy, not an intolerance but allergy. There is dairy/lactose in so many things... worth a try if you've not considered it. Hope you will start to feel better soon.

Yes yes, cannot agree more! Thank you Thisissuss!

Yeah they tried to push me with antidepressants too but I declined as I just knew there was something else going on, the body pain, the crushing exhaustion, it wasn’t right. (This was through 3 different dr surgeries due to house moves, so wasn’t even just one stubborn Dr!)

Agree with a previous poster too that the UK normal range (TSH) is behind the times and other countries diagnose and treat at a lower threshold. It is an ongoing area of medical debate apparently.

i had almost all these symptoms when I had long COVID. Could you have had a virus years ago as it sounds very much like a post viral illness. Covid triggered MCAS, histamine intolerance and glandular fever again for me. Took me almost 5 years to recover.

I absolutely agree. Peri causes many, many symptoms and hormone tests are very variable

It doesn't seem like you have any one thing in particular - toenails peeling off is probably a nail fungus, some of your other symptoms could be from poor diet, being in bad shape, chronic fatigue, long COVID, not enough sleep. Could be any number of things or nothing at all and probably nothing a blood test will reveal. Do you have hypermobility? That could explain the aches and pains.

Wow not rtft but I can see this got nasty despite the op literally begging for help from strangers because her doctor isn't helping her. Show some compassion people!
OP I have little to add except to say I hope you can work out what's wrong. I'm also chronically sick with no answers- except I was told all my bloods were normal and when I viewed the actual results I could see I was borderline on most and well out of range on one - I will be chatting to my gp about why I was told it was all normal when it's not!

An area the NHS would be wise to invest in if they are really going to start taking female health seriously...I'll not hold my breath as it took nearly a year after thyrotoxicosis to see the only endo in the area who signed me off because the meds worked and bloods "fine" despite my thryoid still being enlarged!

Have you considered lyme disease? It's often misdiagnosed and difficult to identify. Sorry to hear you're having so much trouble. Good luck ❤️