I am truly at a loss as to what is causing all of my health issues? Can anyone help?

[MellowAfternoon]

Sorry this is long but I am at a loss right now.

I know that no one on MN is able to diagnose me but I have been back and forth to the GP surgery for years and am still getting nowhere with my health issues. I have struggled for years with ongoing physical issues and they are not getting any better. I am getting more frustrated and am not sure what to do next. At the start of every new year I tell myself I will get this sorted once and for all yet despite being very proactive with a healthy lifestyle I am still experiencing the same daily issues and quite frankly they are fucking up my quality of life, I am miserable.
Not helped that my GP surgery (like most I expect) have a 'One appointment, one problem' policy so if I go with a list of my issues they won't even look at it and will ask which is the most pressing issue and deal only with that. It would take my months of going back and forth to deal with each issue separately and I am pretty sure most are connected.

I was convinced for a long time that my issues could be related to a B12 deficiency or thyroid issues but my latest panel of bloods taken this summer have all come back as normal. I feel I am going round in circles feeling more dreadful each day.

Here is a list my issues and wonder if anyone can relate and maybe offer up some advice how to feel better, maybe suggest something that I haven't yet tried?

I have dealt with decades of gut issues:- bloating, nausea, burping, acid, excessive gurgling. Daily loose stool with urgency in the morning, bloating in the evening, lots of flatulence, rectal discomfort and a feeling of pressure which makes me feel as though I need to go.
Issues are made worse by eating, my gut seems to hate food.

Over the years I have seen 5 gastroenterologists and 3 deititians. (paid privately for many of these).
I follow a personalised low fodmap plan, I avoid my known trigger foods which for me is dairy, eggs, chicken, onion, garlic, wheat, caffeine, sweeteners, too much sugar, too much fat, certain fruits & veg, high fibre (and several other foods).
I keep my weight low I exercise daily and practise gut directed hypnotherapy and yoga yet still I suffer from the gut issues daily.
Over the last 5 years I have had 2 colonoscopies, 2 gastroscopes, a pill camera endoscopy, a bile acid malabssorption scan and various scans. I am clear for IBD, BAM, h pylori and coeliac etc. I tested positive for hydrogen SIBO but the antibiotics (rifaximin) made me feel worse, gastro says to ignore the sibo diagnosis as in her opinion there isn't enough research on sibo yet?!

I take immodium when needed and other IBS meds but they have little positive impact.
SSRI's make the diarrhoea worse, TCA antidepressants leave me zombie-like.
I have truly had enough of these digestive issues, I have just had to race home from taking my dd to work as I suddenly needed the loo. This is my life now. Completely dominated by my bowel.

I have also struggled with decades of gynae issues, with very heavy bleeding and uterine polyps which left me anaemic for years (ferritin levels of 3 which the GP did nothing about).
Decades of painful ovulation. Endless gynae visits and procedures for polyp removal. I have had 5 hysteroscopies and in 2022 I had iron infusions due to the low iron stores followed by a uterine ablation op. The ablation has failed as I now suffer from excessive pain during each period because the trapped blood can not escape (big regret opting for this procedure).

I requested a MRI late 2023 and it was discovered I actually have endometriosis and adenomyosis (throughly pissed off it has taken 20 years to discover this). I am now on a waiting list for a laparoscopy (god knows when that will be).
I am 51 and in perimenopause which is certainly not helping issues. I have tried various HRT's but they make the post ablation failure pain worse. I am also on a waiting list to see a NHS menopause specialist as my gynae has no knowledge or interest in HRT so again God knows then this appointment will come through.

Other daily issues (may or may not be related but I will list them all):-

Regular mild headaches and aura migraines (I have suffered with the aura migraines since I was pregnant 20 years ago and now them during each period so hormonal for me). My mum, sister and ds all experience these too

I always have a blocked nostril and post nasal drip after I eat

Sore/raspy throat (often on the same side as the blocked nostril)

Tinnitus (had mri for this, nothing found)

TMJ disorder and tight jaw (also grind my teeth at night). My teeth are also wrecked maybe due to the night grinding (I have gone through loads of mouth guards but end up biting through them)

Sore tongue a lot of the time too

Thinning hair

Itchy scalp (nothing on scalp though)

Itchy skin in general and sensitive skin (skin will mark with just a plaster on it and I often experience petechia and have done so for years)

'Off' vision eg lots of floaters, slightly blurry vision and blobs in vision. I have regular eye tests and all ok (last one 2 days ago)

Tired a lot of the time even though I get around 8 hours per night

Cold all the time, I carry a hot water bottle with me 24/7 (also have this for the gut/gynae issues)

Cold hands and feet and mild raynauds during the winter months

Most of these issues have been with me for years but perimenopause has exacerbated it all, a bit like a fire has always been slowly burning away and peri has been like a shit load of gasoline poured over it all.

I can't afford to go privately for anything anymore as I am not working atm.

What can I do to try to get my health back on track? What have I missed? I keep slim, exercise, I only drink water, I have never smoked or taken drugs. I am at a loss and going back and forth to the GP surgery is really getting me nowhere.
I want to get these issues under control but how can I when I don't know what is causing them? It goes without saying that my mental health is shot to pieces with this.

Any ideas?

I can't see how I'd have contracted Lyme's tbh as the area I live is not a Lyme's risk area (Essex) but I've always owned dogs and walk them every day over fields and woods so it could be a possibility I suppose?

Thank you, I'll have a look.

Thank you.
I have been interested in the idea of low stomach acid for a while and have often wondered if this could be an issue for me too. I did the baking soda test last year and never burped once (did the test 4 times over a week). My gastroenterologist literally laughed in my face when I suggested low stomach acid but I do find I struggle to digest meat and am much better eating vegan foods.
I naturally IF simply because I can not face food for the first half if the day and when I do it has to be something light.
Can I ask which probiotics you used?

It has been mentioned several times and I'm definitely going to look into this as a possibility.

Okay I'm not a doctor or an expert of any kind, but you have mentioned virtually all the main symptoms of GERD. I am guessing as you have had so many investigations and procures relating to your digestive system, this has already been ruled out, or at least it's not considered to be the main problem?

I have terrible post natal drip after eating and also tinnitus and very gunky ears, but these things I am 100% sure are related to my GERD. Have you been prescribed a PPI such as Lansoprazole and has it made any difference? That only explains half your symptoms though.

As soon as you mentioned your gynae issues I also thought Endometriosis because it can also affect your bowels as well as your reproductive organs. Endo is also notoriously slow to get diagnosed and is often dismissed for years as a variety of other things.

The other thing I'd look into because of the headaches, itchy skin, thinning hair etc., is any of the blood disorders caused by a mutation of the JAK2 gene, such as Essential Thrombocythemia or Polycythemia. I know you say you've had blood tests done and they came back fine, but I suppose it depends what they were testing and looking for specifically, so it might be worth asking your GP about this. It's one of those things that's often diagnosed after years of suffering with random and seemingly unrelated symptoms where the dots can't be joined up in any obvious way.

Lastly, I know you've said what some of your trigger foods are, but have you considered going on a very strict keto diet consisting largely of meat, fish and green vegetables? It seems to be a miracle cure for people with all sorts of inflammatory and digestive issues and a whole host of other things. It's worth a try for a week or so at least, to see if it makes any difference.

Probiotics will not help until your stomach can process food. Unfortunately, most doctors would not consider low stomach acid a serious issue hopefully with more research it will be taken more seriously. This is the supplement Betaine HCL and you will know within hours/days if it is helping.

We only needed it for one month as your body starts to produce HCL on its own. Any probiotic should help once your acid is stronger but this is the one we used. I naturally avoided food too and never ate till midday which I think was my immune system trying to find some sort of stability but this left me weak and unable to function so I had to ration my energy.

He wouldn't even discuss my bowel issues with me, as soon as I mentioned it he waved his hand dismissively and said "we are not hear to talk about gut issues, I'm a gynaecologist" 🙄

Good god, that's disgraceful. There is a very strong chance that the two problems are somehow linked and he should know that.

Intermittent Fasting now will only make you feel worse as you are already technically malnourished. I have had 90% of your symptoms and was susceptible to so many illnesses. I even survived Sepsis at 25.

I am so grateful to feel well now and no longer need to drag myself out of bed every day after laying awake for hours.

Isn't it just sickening when they refuse to have anything to do with anything related to the next organ over. Just daft!

Thank you, my gastroenterologist just keeps repeating the same diagnosis, functional dyspepsia for the upper issues and IBS for the lower ones. It's an absolute pain having both upper and lower issues because medication for the upper ie ppi's give me a worsening of my IBS-d and the IBS meds ie imodium often make the upper issues worse.

I have tried the keto but it is as so very restrictive due to the fact I can not tolerate dairy, eggs and high fat foods. I also can not tolerate the sweeteners used for most keto recipes. I am ok with fish and turkey but find my stomach struggles with most meat and I'm better on a more plant based diet. My dietician advised me against anything like a carnivore diet but I know many on the support groups I follow thrive on it.

I was so annoyed with him and the dismissive way he handled it, literally waving his hand in front of my face to stop my talking.

Get a full antibody screen done even if you have to pay privately. Get your thyroid antibodies checked. My SIL did this and had something wrong. Hashimotos? And that can cause hair loss, bowel problems and fatigue. And feeling cold and heavy periods

This - and sounds like your immune system is on “high alert” I don’t know the medical term for it, but I know when I am extremely run down I lose my hair and get really bad skin. I am currently experiencing peeling skin on my eyelids - it’s very painful. But I am in back to back virus infections.

Have you had a full hormone panel or had your adrenal glands scanned (they sit in top of your kidneys and regulate a lot of stuff we don’t give them credit for!) - a lot of GPs don’t know slot about adrenal glands and overlook the Knick in effect.

Other than that, have you tried therapy, in the nicest way possible, having bad mental health can manifest into physical problems that can’t be explained, you might not feel like you are anxious, depressed etc but it doesn’t mean you are not xxx

I have severe endometriosis and it all sounds very familiar to me too - I had my main surgery paused and then restarted 6 weeks later due to needing a bowel surgeon too.

Surgery for me made a massive difference, I did go private though and had a very extensive procedure. I had the injections for 12 months too. Surgery without them will not be anywhere near successful so be prepared to have several laparoscopies. Even with nerve damage as a result which took a year to recover I am very glad I had it. I will never be rid of endometriosis , damage was just too bad and adhesions etc will always cause an issue but a lot of my issues calmed down dramatically after my big surgery.

Obviously I'm not a doctor, just an endo sufferer, but from that and how it has affected me over decades and how dramatic decent treatment was and have me my life back I feel from your posts that this may have been a big missing link up until now for you.

Very minor aside, as I'm no help on the medical front but glad to see you've had lots of help with that already here - one thing that struck me with the hair pic is that presumably that's not your natural hair colour given your age and if it's not, it looks like it's probably a strong chemical you're using to get it so blonde, which may not be the best for it when it's thinning and you're potentially looking at autoimmune issues and the like. Perhaps your colourist is across it and only using mild products but just had to mention it in case it's a factor that isn't helping matters. Hope you get that and the rest sorted in some way as it all sounds very tough to be coping with.

the rash on your arm from a plaster is very clearly... an allergy to plasters?? I've known ive been allergic to plasters since i was child, its only the material ones though. leaves exactly the same rash.

you don't mention your age or i have missed it..

it sounds like you have several health issues, not just 1, and you probably just have to suck it up and live with them.

IBS is my first guess.. something i also suffer from, i am intolerant but not allergic to gluten. My life is a constant roundabout of constipation and diarrhoeas. It is what it is.. you've had test after test which proves you have nothing sinsiter going on.

I am regularly deficient in Vit D, B12 and folate... i would assume due to the IBS. Its never going to get any better, i just deal with it.

Tinnitus I've had for years, recently been told i am hard of hearing, and apparently tinnitus is a sign of hearing loss... hearing aids for me now.

I have hemiplegic migraine, had them years. You've had test after test for what seems a long time with no results... doesn't that tell you something?

I'm going to say please go and see someone who specialises in wide excision surgery for endometriosis I can recommend a London surgeon.

Before you let the NHS go anywhere near your uterus or pelvic organs with their stupid lasers and royally screw up your insides.

A hysterectomy will not fix the endometriosis which I suspect has infiltrated your bowel.

And also start taking antihistamines daily asap and get that lowered that will bring down reactions and you no doubt like like Endo sufferers have high histamine levels.

So low inflammatory diet, get the endometriosis removed via a wide excision surgeon, recover and then start non cyclical HRT so in effect the mini pill will help to calm the flare ups and then have a gradual low dose introduction to oestrogen so you don't risk flare ups.

That's a whole ton of symptoms that can mostly be attributed to the above. Potentially..

I have Fybromyalgia which has most of those symtoms. For years I had tests then saw my GP one day said i wouldn’t leave unless he did something I was loosing my hair fatigue was off the scale tummy issues migraines. He did more tests the test for thyroid always came back normal he did a different test which showed I made thyroxine but had antibodies that threw it back out so practically zilch thyroxine. The thyroid controls your system so makes everything out of sync if it’s not right. By then it had caused many issues including having Fybro. I also have been allergic to plasters since young. Ask for an antibody test it may help.

Same as my SIL, her nhs thyroid tests were normal but the more in-depth ones showed she had a problem. Pretty sure she’s on thyroxin now.

As part of your blood tests was a bone profile test done? Hyperparathyroidism/ hypercalcaemia can cause some of the symptoms you are suffering. It's caused by an adenoma on one of your parathyroid glands which is often picked up by an ultrasound of the neck.

OP says she has a ferritin level of 3.

80

Anxiety and hormonal changes.

I would recommend mounjaro injections. It’s help all my gastric symptoms which are like yours and also take hydroxychloroquine for hair and skin.

Mounjaro will help with anxiety weight loss gastric symptoms and seem to help with low level inflammation.

since starting I’ve lost 15kgs… I only eat one small meal a day…. And I feel better I many ways.

I agree with daily antihistamines but if it doesn’t help try hydroxychloroquine for hair and skin.

Thank you.
I have never had a full hormone panel taken, I imagine that's something I'd have to go privately for? Sadly I have no funds for private medical tests as I am currently not working. The same would go for therapy unfortunately, I could probably get some more CBT on the NHS but there is a long waiting list for that.

With regards to the adrenal glands that has me thinking. Back in 2019 I had to have an urgent ct scan. Long story short I had requested an US scan on my stomach area due to my upper gut issues getting worse. It was discovered I have a very large left kidney cyst (it's still there). I had scans for several years as it had a septation so needed monitoring. The ct scan found incidental findings, one were some 'tiny' adrenal nodules/cysts, my urologist said they were nothing to be concerned about but I do often wonder if they may cause high cortisol levels or something similar?