Still no idea what’s wrong with me

[789B]

I’m not really sure where to go from here. Approx 5-6 months ago I started having dizzy episodes that became more and more frequent until it was constant. I’ve had days of not being able to get out of bed, it’s been that bad. I saw 3 different GP’s for it, they did bloods, blood pressure, vertigo tests, neurological function tests. No answers so they just said ‘there’s nothing we can do for you. We could refer you to ENT but the wait is over 12 months’
So I went private to see an ENT. He did lots more tests, couldn’t find anything wrong with my ears, even did an MRI. Still no answers.
I’ve also seen an optician and updated my prescription just in case it was that. No difference.
I have a non functioning thyroid due to radioactive iodine treatment over 10 years ago. But according to blood tests, it’s correctly managed with my medication.
Other symptoms that may or may not be related to the dizziness:
Extreme tiredness
Brain fog
Bloating
Stomach aches
Night waking/Night sweats

I’m mid thirties and they’ve checked my hormones so I don’t think it’s pointing to menopause.

I’m happy to use my private insurance to see other types of doctor but no one seems to know what type of doctor I need to see.
Can anyone help me identify this?

Could it be chronic fatigue syndrome? I am not sure what tests are done for that. It is extremely debilitating. An alternative thought is - were you overseas before this started? I'm thinking a tropical illness, in which case you'd need a medical person trained to recognise the symptoms. I encourage you to keep asking questions. There is definitely something going on and you need to get to the bottom of it. All the best.

Thyroid can give symptoms even when bloods say in range.

my dd has hashimotos thyroiditis and needs to be in the lower half of the range at minimum.

Sounds like chronic fatigue.

First thought was thyroid not being right despite bloods so have trialled different doses to put me at top end of normal and lower and it genuinely made no difference.
I haven’t been abroad so nothing like that.
I’ve considered chronic fatigue from the start but it’s never been mentioned by a doctor as the dizziness is really my main symptom and it’s not listed as a symptom of chronic fatigue. I feel so hopeless right now. I need some kind of super-diagnoser who figures out the stuff that doesn’t even have enough information for a referral to a consultant.

It all points to hormones i would say. Either your thyroid or perimenopause (or a mix of the 2). Try Heath Unlocked Thyroid forum for some advice. You cant really test bloods for perimenopause but you could try HRT (maybe the Merina coil?) To see if it helps.

Have you also had your key vitamins tested?

Thank you for your response. I already have the Mirena coil. But I don’t disagree that it feels hormone related, is bad all the time but I do think there is a slight uptick in severity when I’m on my period. I believe they did check all my vitamin levels and all was fine. I’m pretty religious with my multivitamins and have a fairly well balanced diet.

Have gone back over my blood test results from September and actually a few of them were listed as borderline but the GP said it was all fine? The following were all borderline:
immunoglobulin
prot electrophoresis
Tissue transglutaminase IgA and IgG

No idea what any of that is but they were all below the normal range but no further action required?

Sorry IGA was below normal and IGG was above normal range.

What's your heart rate like? When I was initially diagnosed with long covid I was dizzy all the time. My heart rate was over 100 just sat down. I've been diagnosed with POTS and inappropriate sinus tachycardia. Since I was started on propranolol to help with those the dizziness has massively reduced.

Resting heart rate is my usual, around 65bpm. But I have been having occasional palpitations. I considered long covid as I think I remember an unusually bad cold at the start of all this. They did check blood pressure and heart rate etc and didn’t seem concerned, although they weren’t concerned in the slightest about my life limiting mystery illness so 🤷‍♀️

I suffer with something called vestibular migraine - it took me years to get a diagnosis as I don't get headaches or migraines with any pain (all the doctors thought it was my inner ear). Worth having a Google to see if your symptoms align.

Are your thyroid problems autoimmune? I am wondering if blood tests point to coeliac disease?

Yes thyroid became overactive 20 years ago with autoimmune Graves’ disease. 10 years ago I had the radioactive iodine which basically kills the thyroid so it does absolutely nothing now. Not sure if that means I no longer have Graves’ disease or not though. The answer isn’t clear on the internet.

Thank you for your answer. I don’t think it is this though as it doesn’t go away and it isn’t made worse with motion. I can be just as dizzy lying down as I am standing up. It’s not a spinning sensation so they’ve ruled out vertigo. It feels more like I’ve been drugged, like I’m just not quite really here. I did use to suffer with normal migraines but they were hormonal and completely stopped when I got the mirena coil.

I have something called MCAS and had all of your symptoms. Took years to work out what was wrong with me.
Do you have bad reactions to things with high levels of histamine? Red wine etc?

Weirdly enough my DH suggested this at the weekend. Some of the symptoms are there but a lot are not. I don’t drink red wine and I don’t suffer much with hayfever/allergies but I have had a runny nose basically all year and I do suffer with flushing but that’s not totally unusual for me. How did they confirm it was that and how are you treated for it?

Face flushing is a big sign! Try to take note of when it happens. It can be triggered by high histamine foods or different fragrances etc.
I was diagnosed by the British Allergy clinic in London. My blood histamine levels were off the scale.
I now see a different specialist though, who works with MCAS and menopause as hormones can play a big part in MCAS too so trying to stabilise those at the same time.
Treatment is antihistamines and mast cell stabiliser drugs.
Drop me a message if you want more info

@789B Dr A on TikTok does a lot of posts on MCAS and autoimmune issues and is well worth watching.

MCAS accounted for my post nasal drip and flushing. I also have history of CFS. My integrative doctor looks at MCAS as a symptom rather than a diagnosis and as such I have a completely different programme of treatment than the other poster. The focus is on nervous system retraining and it has been very effective, please DM if you want more info.

@Melsy88 @MinnieJumbo I found this on Google. I can probably tick half of the symptoms on the image. Would that be enough to make them investigate MCAS? Do you have more than 50% of these symptoms? Can a GP test for this? What kind of consultant do you see? I can ask my insurance if they’ll send me to a consultant for this but I don’t know what kind it is, endocrinologist? Sorry for all the questions, just desperate to get better.
Do you feel well now that you have a diagnosis and treatment?

Sorry the image is under review. Hopefully it’ll show up soon. My GP has offered me a telephone appointment in January. What sort of tests should I be asking for to rule MCAS in or out?

The NHS is generally terrible with MCAS in my experience. I'd pay to see a specialist if you have the funds. Where (roughly) in the UK are you?

I’m near Salisbury and I have Vitality insurance. I could ask them if they’ll send me to a specialist, do I need an allergist? The ENT I have already seen is listed as an allergy specialist also, would he be the right guy to go back to with this suspicion?

I don't have all the symptoms. Don't have hives for example.
My main issues were brain fog, fatigue, flushing face, bladder pain. Everyone seems to be different, so it's a hard illness to diagnose.
You need to see a MCAS specialist really. There are a few around the country!
I feel a lot better than I did. Am on a low histamine diet as well as the meds, which helps a lot.

Might be a bit far for you but Clare Ashby at My Specialist GP in Marlow is excellent. I think she might do video consultations too