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

Did you have a negative biopsy?

I'd look into Psoriatic Arthritis. You can suffer with it without the usual skin issues. You are suffering from many of my symptoms even though I do have the skin issues too, along with the pitting, peeling, tissue thin nails. Good luck.

Wow that list sounds like a lot that I have! Though I do have adenomyosis but also a lot on your list too! I'm so fed up of it all!

@BexAubs20 id ask for a print out of your results. You will assume things are normal when infact the lab didn’t test them eg the Hep C one said normal but lower down said ‘not tested’. Gp systems don’t always flag when labs have rejected things so patients are unaware that they never got that test so can’t rule something out.

also you may assume all tests have been done but there aren’t specific gp tests for lupus- you need a referral to the endocrinologist for that or immunologist.

id want an ultrasound of my stomach/gut and are your liver function tests normal?
it might be worth asking us what panel we think you should run ideally, then getting it done via Thriva or another private postal service.

then you know what your baseline is.
id repeat the vit D to check it’s working. I had loads of those symptoms just from vit d deficiency. Also check your calcium if they haven’t already- if you are vit d low.

who cares what your gp thinks. It’s not normal to have this every day and it’s affecting your daily life. Don’t be written off as ‘hormones’ without a referral or investigations. I hope you feel better soon.
id ask them what their working diagnosis is and what their current evidence for that is.

Have you had any CT scans to rule out anything more sinister?

ME/CFS?
Long covid?
Keeping a symptom and activity diary may help to identify if you are getting post exertional malaise
Visible app may be helpful for pacing and recording symptoms and activities (there's a free version and paid for version, try the free one first)
Good luck

I've not been able to read the whole thread but OP, you said you had a stool test for coeliac - but you don't test for coeliac that way. You need to do a very specific blood test for certain antibodies, and then a biopsy to confirm if there's something that looks likely in the results. That might be something to go back and push for.

I know it sounds awful- but I think he's right about the 'see if anyone is interested' unfortunately, and its not up to him. My family member has a long term (years) undiagosed (probably sth neuropathic) condition and although she is lucky enough to have a GP who cares and listens and tries- she keeps making referrals to different services And they look at the notes and say nah, doesn't sound like our job and knock it back again. She can't force them to see her!

It's seems monumentally fucked up that there isn't a kind of consultancy GP service, where there is a general person who is higher up than a GP but who's job it is to find out what is wrong. When you get to the referral stage it seems to he you have to be referred to specific services, and if they decide to not see you or if they see you and rule out the thing that is relevant to them then that's it, they have no further responsibility to keep digging down different avenues, it's back to the GP and try for a referral to someone else.
I love that we have an NHS, but there is definite room for improvement as far as long term and complicated ailments go.

I would suggest Fibromyalgia should be looked into but also CFS (chronic fatigue syndrome) could be considered too. Very similar to issues I have, I have fibromyalgia and currently waiting on a diagnosis on CFS. I do also have other issues as well so it’s really difficult to say what’s causing what - probably similar to you.
you’re not crazy, you probably feel it with everything you’re dealing with but it’s not in your head!
Definitely go back to the GP! I hope you get some answers soon x

Vitamin B - multi will help with various of these. Complex B will help with mouth ulcers and corner mouth sores. Cheap everywhere.

Vaseline will take care of some too. if you put a little vaseline on a cotton bud and wipe each nostril, it will stop the sores - stops kids picking their noses and infecting the sore crusts which irritate.

Sore lips? - more vaseline. In fact, we lose lip cells which means thin lips. Use vaseline each day (white petroleum jelly in the baby department is cheaper and doesn't smell).

Back and hip pain? Make pads with Jiffy foam - 1.5 -2mm thick. Psin under right side probably caused by back problems.

There are gummy vitamins which are for 'hair sin and nails' which you could try. John Frieda is good for dry hair. Aching joints you can warm up with Jiffy foam and bring blood to the surface. Dry skin is like shrink wrap on joints, so plenty of moisturiser - cheap supermarket type is as good as expensive fancy stuff. I can't afford fancy stuff.

Meditation for fast heartbeat. Heavy legs - God knows, but we all have them at times.

What you really need is a physiotherapist, and although they charge privately, by the time you have waited for an appointment and travelled to it, you probably end up paying the same, and most places have private physios.

The twitches could be anything neurological, or an indication you are lying awake worrying about all the other things, which really, most of us have, and our grannies and great grannies before us, and all they had was vaseline and hope.

Yes that's what I thought. You need blood tests and a referral to rheumatology.

I also had lots of random symptoms, the worst of which was exhaustion. Turns out I was low in iron, b12 and vit d so now I take supplements and have regular b12 injections at the docs. That helped a lot but I was still more tired than I should be. More blood tests showed I was zinc deficient and taking zinc made me feel more human (and, weirdly, my eyelashes longer). But the final piece of the puzzle for me was doing a food intolerance test and speaking to a nutritionist. I have since eliminated the food I had lots of antibodies to and I feel SO much better - clearer and less achy. When I accidentally eat something I am intolerant to my tummy is v upset shortly afterwards and I am noticeably sluggish and sleepy for the rest of the day - I didn't notice before as I just felt like that all the time but it's really obvious now. Will slowly reintroduce foods one by one once my body has had a chance to 'reset' but I do think it's worth looking into intolerances and gut health, as health is a holistic thing and everybody is different. Oh and I've always had awful hayfever but eliminating the food I had issues with has eliminated the hayfever too - something to do with cross reactivity between birch pollen and soy. Now my body feels less under attack it is not reacting so much to the pollen. Good luck.

I have fibro and M.E I it took them years to diagnose me and I also feel like any other problems I have they put it down to that without looking into things! I’m sorry to hear about how much of a hard time you are having, I don’t think people understand how debilitating it is!

Also I have just seen there was some negative comments on self-injecting b12. I self-inject b12 in between my jabs at the GP. NICE guidelines say more research into self-injecting b12 should be done (rather than: it's bad) and my GP is aware I self inject. GPs don't prescribe more regular shots at the surgery purely because it costs them too much in nurse time/ appointments. However if you go to a private b12 specialist (and qualified doctor) like Dr Klein he will prescribe you 20 shots at a time which he recommends you inject twice weekly, and he will show you how to self-inject. Personally I only do it around 2-3 weeks after my last injection as that is when my energy levels drop and I start to get the muscle spasms in my foot and pain in my lower spine. Untreated B12 deficiency can lead to permanent nerve damage. I was the same as you - struggled to climb the stairs but supplements, injections and diet changes have hugely improved my quality of life.

If your GP is looking for one answer, then they are wrongggg! Certainly with a big shopping list of symptoms it is commonly fibromyalgia - for him to say no cure is not quite right - he needs to confirm and then help you with a management plan.
I don't have such a long list but I have had "eyes" up all three, a whole raft of blood tests and scans. I have low VitD and iron - so feel a little less exhausted.
On a weight management plan, and advised to get more sleep (inc naps). Feel a bit better. But diagnosed with "fatty liver" as an aside, but my GP is great - more tests for the lower abdominal pain, but the reduced carbs on my SW plan have really helped.

All I can say is persist, and if your practice has more than one GP or a nurse practitioner then try for a more sympathetic service
Best wishes

Very sorry to hear what you’re going through OP. I truly hope you find a solution.

Have you taken a look at your diet? I mean literally have you taken a thorough diary of every single thing that passes your lips over a few weeks and taken notes of how you feel afterwards? I recommend you do this and keep a thorough diary.

I could be completely wrong but if you have not investigated your diet and changed it, it’s something you cannot rule out. Think about it, you put food in your body constantly every single day of your life, so it could make sense that something you are eating is causing these odd reactions in your body.

You could have developed adult onset allergies. This happened to my wife a few few years ago and she was suddenly allergic to various foods that she has never been allergic to before.

She experienced many symptoms that you describe but not all of them. It took about a year and a half before we realised her symptoms were caused by food. Doctors were useless. She had every test with the doctor just like you and everything came back normal. She had cameras up the bum, cameras down the throat, biopsies, blood tests, the lot and nothing concluded anything was wrong and according to the doctor she was in good health.

I eventually started by saying she should cut out gluten from her diet and she immediately saw an improvement. She cut it out of her diet for a few weeks and now, any time she has the slightest bit of gluten and she has an extremely noticeable and tangible reaction. Different foods cause completely different symptoms. Not all gluten reacts the same. We have gone on to learn that she’s allergic to quite a number of foods that she has always eaten all of her life. Some of the foods that she is allergic to are not one of the recorded known allergens. It’s just like one day she woke up and the body decided it doesn’t like those foods.

we’ve all heard the phrase you are what you eat but food is the most stealthy of things that can harm you as most of the time we are not thinking about what we are eating.

Obviously I have no idea what your diet is like, but a good starting place is to eat food that is fresh and non-processed and that has been grown naturally in the Sun, think paleo diet, with the exception of anything wheaty or gluteny. So back to the basics of fresh fruit fresh vegetables lean meats nothing processed, beans pulses. Possibly even avoid or test out lactose. You may want to do a process of elimination first and anything that is a registered allergen would be a good start. If you do a diary of all of your food for a few weeks you will see patterns and you might be able to draw a conclusion.

We have done lots of research for the past few years and I’ve read many stories of adult onset allergies, and sometimes it doesn’t make any sense as to why this has happened. Look it up yourself. Apologies if this is wrong but certainly something to consider investigating at the very least, given your situation.

Have a look at the B12 society website, it's literally ASTOUNDING how ignored and badly managed this is. As B12 is in every cell and every nerve in our bodies the symptoms are extremely wide spread.
I also second you getting your results printed in full as "in range" is not always ok, iron (ferritin) range is often 15-200 and barely anyone is ok around the 15 mark. If you look at the iron clinic in Cambridge they recommend adequate levels for good health being above 75.
Symptoms along with test results build a clinical picture, not just numbers.

If it was elhers danlos syndrome you would have had symptoms for most of your life it is not an autoimmune disease / condition it is a genetic one handed down from one or possibly both of your parents. Part of diagnosis is going over family history of symptoms I know because I have Elhers-Danlos Syndrome. It took 25 years to get diagnosed I had issue of dislocating joints since I was 9 and pain way before that. It's caused by a lack of collagen so joints and internal organs are affected. When your young joints are too flexible as you get older they start to solidify and get stiff both are painful. I can dislocate my ankle stepping off a curb. If I cut myself it will bleed for hours and the tiniest scratch leaves a scar. Elhers-Danlos will not show on blood tests. It's diagnosed by the Beighton test. All my blood tests come back normal and as a kid I was told it was growing pains. The only way I was diagnosed was because a dance teacher noticed how I opened a packet of crisps and she asked me if I had EDS turns out she had it herself. She told me to mention it to my GP who had to look it up and instantly said I think that's what you have referred me to rheumatology and the rest is history. You have to fight really hard sometimes to get NHS drs to listen.

Good point. Side point it could also be worth the OP checking out Pernicious Anaemia if not already checked - this is an autoimmune thing that means we can't absorb b12 properly and can cause all sorts of issues.

Edit I meant to quote the poster above that one sorry!

Agree it is a good approach to eat less processed food. There's so many ingredients in things these days and our bodies weren't designed for that.

I had a lot of these symptoms about 4 years ago. I’m doing so much better now. No one seemed to really care too much what was happening, but I did get put on HRT which helped with some symptoms but not all.

I was eventually told I was low in Vit D and was put on 3000 IU for 6 weeks to get my levels back up, then told 2000 in the grey months and 1000 in the summer. Since this I’ve been a lot better. I take iron tablets as well but just normal strength. When I first started feeling bad I had awful flooding periods so took a slightly higher dose for a few months. It did seem the the GP advice was all a bit hit and miss, try this, try that and see what happens. I found that different GPs thought different things about vitamin levels (I never got to see the same person). One told me my vit D levels were really low, I needed supplements quickly and she was worried about my bones, to the next one I saw seeing the same results and telling me they were fine.

Can you afford therapy/counselling to address your stress, depredsion and anxiety?

I haven’t looked through all the replies, but in case it hasn’t been mentioned, you need to have a look at your diet. Sounds like your immune system is suffering (and fibromyalgia is associated with abnormal immune function). Things that mess it up include : sugar, sugar, sugar (especially watch for hidden sugars in bread, cereals, yoghurt, snacks); ultra-processed foods including ham, bacon, deep fried foods (like crisps) and packaged snacks. Increase fibre to feed those good gut bacteria and get at least 30 different plant-based foods every week. Decrease red meat; avoid all alcohol and smoking.
Increase intake of anti-inflammatory foods (google it).
Other things that increase inflammation include: stress, poor sleep, lack of exercise, lack of enjoyable activity and social connections, excess weight, getting older.
I’ve been where you are and now work to help people with these problems in my professional life. It’s hard work but well worth it to get your life back! Best of luck x

FYI people with depression and anxiety have been shown to have higher levels of inflammation in their brains. It’s a global (whole body) low grade inflammatory problem (and this is generated by your immune system). ❤️