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?

This is complex and understandably overwhelming for you. I'll get right into it and mention two people. A close family relative has had to deal with a wide range of auto immune related issues - they've been diagnosed with Crohn's but the range of symptoms is far wider than are covered by that diagnosis: I'm afraid these issues have plagued them for 30 odd years. There's been, or appears to have been, some improvement over the past 2 years roughly, but I will leave the possible reasons for that for a moment as it ties in with the reflections of a very close, long standing friend (30+ years), a vet, who suffered with chronic fatigue (ME) for several years before "recovering".

The Maudsley Hospital has a Persistent Physical Symptoms Unit: can you ask for a referral to them?

They specialize in persistent pain and conditions like IBS and chronic fatigue.

Have you come across SIBO -Small Intestinal Bacterial Overgrowth?

Has you GP talked about a "coordinated care plan" for you at all?

Are you familiar with the term "clustering" in the context of autoimmune issues?

So, back to my close family member and my friend. Both focused on biological (i.e. disease) and functional factors (functioning of the body) and paid privately for gut biome, stool, blood and DNA testing as well as paying for dietary supplements: both were adamant, given the physical symptoms, that psychological factors were not a major contributing factor - this was the unshakeable and all pervading mindset for many years. Well, anecdotally, I can say that, that seems not to be the case: it's difficult for me to go into all of the exactly details out of respect to them. There were some issues around self esteem and about disappointing themselves or other people, about not meeting expectations. Both are high achieving, people-pleasers who struggled to say no and who tended to over-commit. My family member, who held highly paid professional positions before becoming self employed, has retrained and entered an entirely new profession (where they find a lot of personal value in the work) - the improvement in self worth that that has brought seems to be instrumental in alleviating many of their symptoms.

Both have chosen to place themselves and their needs, wants and aspirations above everything and everybody else. I think that's as much as I want to say but there is more to both of their backstories: one middle class stable and supportive, one... not so much

Maybe there are some ideas to think about.

Thank you for your reply mmmarmalade

I will asked about the Maudsley hospital but as I am already with the UCLH neuro-gastro department I'm not sure my GP would refer me as the hospital already offers similar services.

I did test positive for hydrogen sibo a year ago. My gastro and dietitian have both advised me to ignore the results as, in their opinions the tests are currently very unreliable and can give false positives and the treatments are very hit and miss. Dietitian (who has experience in SIBO) said my levels weren't super high either. I joined quite a few SIBO support groups, have bought books and watched endless YT videos on the subject and am quite confused tbh as the advise given is often very conflicting. Some believe it's simply a case of taking a 2 week antibiotic and all will go back to 'normal'.
The advise given by the FB groups is also very expensive, they suggest finding the root cause of the sibo by having very expensive stool analysis tests, nutrition deficiency tests, an OAT test etc and that's on top of seeing a naturopathic practitioner, purchasing Rifaximin at £200 for 2 week supply (often needs to be done a couple of times to fully kill off the bacteria), biofilm disrupters etc. It becomes very expensive and you are looking at throwing least £1k I to it which I simply don't have (especially on top of potentially needing £7500 for a private laparoscopy or hysterectomy for my gynae issues).
It's all very hit and miss as many say the overgrowth comes back if not treated correctly. It's very confusing with many NHS practitioners not fully buying into the hype over it and private practitioners seemingly making a lot of money from people's misery. In all honesty SIBO became an obsession for me last year and I'm still not sure what to do about it all if I'm honest.

I've not heard of a Coordinated Care Plan. I have a GP appointment in a few weeks, I will ask about that.

I have come across clustering in the past but my stumbling block is always GPs and my consultants. No one will commit to anything. I've asked my endo gynae if my gynae issues could be connected to my gut issues, he says absolutely not (yet my regular gynae said absolutely), I've asked my gastro the same question, she says maybe but then again I could simply have endometriosis and IBS as a separate issue. GP is completely non-committal and goes along with whatever the consultants say.
Then there's the neuro-gastro team/department who tell me something different (the psychiatrist says I may have ADHD which could add additional issues, the dietitian tells me just to eat as normal and the neuro gastroenterologist tells me I've just got to learn to live with my issues). You can see how confused I am half the time?

I do very much appreciate there is a large psychological component to all of this and I have worked hard on my mental health for years which is tricky when you have physical issues as well, it's like having a squawking parrot on each shoulder screaming different things at me. I have spent a small fortune over the years on psychological therapies. It is difficult to maintain high self esteem when your body lets you down a lot of the time. I know many are able to do so but it's something I still struggle with. It's still a work on progress and after decades of struggling with my physical health it's not an overnight fix but I am still adamant I will get there one day. But I believe ultimately it's the physical symptoms contributing to my psychological problems, on the odd few days I feel physically well I feel emotionally and mentally as strong as an ox and feel on top of the world.

But all of f this is also very restrictive when you have zero funds to throw at it and have rely on the NHS for help.

This thread was brought to you by 'privatise heathcare.com' lol.

Why don’t you join HealthUnlocked they have several different boards including Thyroid UK and Pernicious Anemia. There are experts on those boards you will be able to advise you better than Mumsnet

Sorry I haven't read the whole thread (but skimmed through most of it!) I had to change my diet for an autoimmune condition but was amazed at how many other issues cleared up since doing that. I cut out sugar so did clean gluten free keto/low carb and upped my fermented foods like kefir and kimchi etc. I'm sensitive to some fruit and veg (nightshade family) and can notice the difference if I do eat them, tomatoes particularly. What does a daily food diary look like for you?

Hi OP,
I’m so sorry you’re struggling so much. As many pp have said, there are several things going on here that have likely been building over most of your life and now expressing themselves together.

Based on your symptoms, things I’d be considering:
-Histamine Intolerance (I’d address this first as it can aggravate everything else to an extent. PLEASE PLEASE don’t do this through a low histamine diet as with your history of restrictive diets for your gut it will just make things worse for you and it’s not a long term solution. Check out the Can I Be Candid Show on YouTube. They have great free resources on this. Esp. their recent Dr.Tina Peers one which discusses histamine and menopause.
-Nutrient deficiencies- you’re likely low on a whole host of various nutrients at this stage of your journey considering the restrictive dieting (not your fault, these are often the standard of care for gut issues but should never be followed long term) and potential absorption issues due to gut issues. These deficiencies will in turn trigger many of the symptoms you refer to, especially hormonal imbalances.
-Hormonal imbalance - my guess would be historical oestrogen dominance, but obviously as you’re going through perimenopause, I’d need to see your full hormonal picture to have a clear idea.
-Trauma - emotional trauma is a massive contributor to many of these things, especially gut issues. We all tend to hold our stress somewhere in the body and my guess would be that you hold yours in your gut.

I’m aware you started your post with an emphasis on a lot of gut issues, but I imagine a lot of these are happening as a consequence of the above and if you address the above, you’ll be surprised how little direct gut support you need.

In reality, you won’t find your solution with the NHS. They’re amazing for some things, but for complex chronic issues like this, they’re a nightmare. It’s not cheap to go private, but if you have the means, then your best bet is a functional medicine practitioner or an experienced nutritional therapist. Some form of therapy for emotional support would be a bonus, but again, I know that’s a lot of expense.

Do some research into what I’ve mentioned above and see if any of it resonates with you. Wishing you the best on your journey and I hope you find some answers soon🤗

Sorry kindlypudding I am not quite sure what your reply means?

Elissaisnotmyname I am a member of most of these groups including many others. The problem is that most of the posters on these groups are in a similar position to me, they are in the depths of their issues and not getting too far so we are all basically in a same boat scenario, which is great for sympathy/understanding but not so much for advise on how to get better. The issue with these groups is when and if someone becomes better they tend to just leave the group and not offer advice anymore.

renomeno I really do need to look into the anti-inflammatory diet. Can I ask what you eat in a day on average? I really need some inspiration.

Thank you so much, I am making a note of everything you have listed.
I would love to consult with a functional practitioner and have some clinics and individuals recommended to me via some FB support groups but sadly I am just not in the financial position to afford this so will need to do as much as I can for myself.

I've skim read your posts but have you been tested for all the main autoimmune conditions? I think endo is autoimmune as is Reynauds & they often go in clusters. If not then insist your GP gives you the basic tests like coeliac, rheumatoid factor, dsdna (lupus) crp, esr. If anything flags up you can get referred to rheumatology for more comprehensive tests. The familial thyroid issues are a red flag. I've read here that the basic UK tests often miss things that more in depth testing shows up. The hair loss can be autoimmune, medication, stress, iron deficiency (I think yours is ok now?) but commonly it's female pattern hair loss to do with DHT. You might respond to minoxidil. You definitely sound like you have eds or heds, there's an eds society but if you get referred to rheumatology they should in theory be able to dx. There does seem to be a link with this and ai diseases. Good luck.

Thanks CherryRipe1 I will mention these things to the GP when I see him on Wednesday.

Wow that's very interesting as my daughter has heds & pots (as do I) , and is being investigated soon for endometriosis via a laparoscopy as showing all the signs but nothing shows on MRI or scans. It's also looking increasingly like she has ASD. Sorry if I've derailed the thread.

Have you thought about small fibre neuropathy?

CherryRipe1 I hope your dd gets some answers soon.

Gioia1 I have never heard of this.....I am off to google.

Thank you. I've just checked your original post and the plaster on the skin redness just made me think of something. If you scratch your name on your arm with your nail or another sharpish object, can you see your name come up in red wheals?

Yes, I can skin write. I know that can be a symptom of EDS but my GP doesn't take me seriously over my concerns, just says it's a bit of hypermobility.

Oh really, I didn't know that! I'm thinking you could have contact dermatitis, a latex allergy or histamine intolerance. My daughter's partner has the latter along with asthma and eczema and has dematographia too. He has to eat low histamine foods & take antibiotics. We think it might be part of mcas. I feel you have a few things going on and they will need exploring and ruling in/out like a detective. Good luck and come back and let us know if you get any closer to a diagnosis because there are lots of us that have fallen in the cracks of mysterious undiagnosed disorders.

I do often wonder if I may have MCAS. What other symptoms does he experience?
Tbh, I think I may have to book in with a private GP so I have time to go through everything with them, these NHS 10 minute 'one appointment, one problem' appointments are getting me nowhere fast.

He had digestive problems like nausea, gas and bloating, joint pains, itching, wheezing & breathlessness, hives, eyes watering, lips swelling, tired all the time. They found allergies to apples, plums, cherries, peaches, wheat/gluten & histamine plus others I can't remember but some of the most obscure things are in the same families & cause issues. He can't eat fish, aged cheese, reheated take away. There's quite a list. He's on two different anti histamines. NHS GPS are good on the whole for the "usual suspects" and referrals but I don't think the training covers the more esoteric stuff. I think you'd be wise to advocate for yourself find a private GP, one that thinks outside the box & is trained in functional medicine as well as allopathic but do get tested for autoimmune conditions by the NHS.

Forgot to add his symptoms got much better after a move to a home without black mould!

I have small fibre neuropathy. It's actually very common in Sjogrens disease. I have Sjogrens, not evident in blood tests. A lip biopsy was the only way and this demonstrated infiltration of immune invading cells in my glands. I had to go privately - of course I did! The expert in Sjogrens at my teaching hospital (man) shouted in my face ' you don't have Sjogrens ' and suggested the burning pain I described was akin to soldiers imagining pain via PTSD after the war. Yes, this is the reality for most of us dealing with these people.

A skin biopsy ( you guessed it, privately) showed destruction of my small fibre nerves.

This is also a problem for some with HEDS. Yes I have that too. ( Diagnosed privately of course).

I won't listen to a single post from anyone who has not lived this. It's so unbelievable that people are genuinely incapacitated yet treated like idiots. It's inconceivable that leading consultants don't even understand the condition and disease they are ' experts ' in. You realise this when you become unwell with problems like this.

There's a genetic link between Neurodivergence and HEDS. This is so apparent just from speaking to 100s of people in groups online.

Once the autoimmune cycle is underway, you can't reverse that in the body. You can suppress it and I'm sure it can lay dormant. I don't know if posters are suggested mindset will cancel that biologic behaviour in the body. It won't. But everything environmental really does exacerbate.

I agree that becoming incredibly selfish is helpful when managing autoimmune diseases. Hence i remain single 😆.

It's dreadful that we have to spend £££'s trying to get to the bottom of our health issues.

It took 25 years for the same gynae department to diagnose my endometriosis because I didn't have all the symptoms, they often refuse to think 'outside the box.

It's horrible I totally sympathise. Individuals with relatively good health or an ' acceptable ' and understood disease will never comprehend the reality of the situation we face until they live it.

Health unlocked is a good source of support and information. Someone here suggested it. SMedia groups like FB can be a bit much at times.

I joined lots of FB 'support' groups but I agree, they are too much at times.

Have you had your cortisol levels checked? Your symptoms sound very familiar and I have recently discovered I could have Addison's disease which is an auto immune disease all linked to cortisol levels. I would push for a cortisol test.

I never have but often think I need to. I think I'd have to pay for this privately.
I had a CT scan 6 years ago. It picked up some small nodules on my adrenal gland, I often wonder if they'd give me symptoms?