I give up with my GP

[Mumsday]

I’ve been trying to find out what’s wrong with me for nearly three years now. My symptoms come and go and include:

Muscle aches
Joint pain
Dizziness
Insomnia
Fatigue
Brain fog/confusion
Blurry vision
Low mood (might be due to feeling crap)
Anxiety esp when waking early
Chest pain
Shortness of breath

I’m 43, fit, healthy etc. Ive been on HRT for a while and initially some of the symptoms cleared up, but never completely.

I’ve had numerous bloods which are all normal except ANA and rheumatoid factor but I have had several MRIs and there is no sign of inflammation so RA and AS etc have more or less been ruled out.

The only bloods I haven’t had are ferritin and Vit D, but I eat a lot of meat and I take Vit D all year round so I’d be surprised if it was that.

My Vit B12 was lowish (249) in 2023 but I have been taking supplements ever since and no improvement to my symptoms. They haven’t repeated the test.

Some days I am pretty good, but lately I am mostly awful. It definitely comes in waves.

GP has now referred me to CFS/ME specialists but I don’t feel he’s ruled everything else out yet.

I am at my wits end.

Is there something I’m missing?

If there are thyroid issues then TSH can vary a lot, and on a single reading can be normal.

It probably isn't but it's worth getting tsh checked in about 6 month just in case.

(My DD was three years to a diagnosis for exactly this reason)

I have very similar symptoms and have been told fibro. However things are getting worse and I have been referred back to rheumatology.

@CherryRipe1 The thing is, all my other inflammatory markers are completely fine — plasma viscosity, anti CCP, CRP, so not indicating anything autoimmune

@SpikeWithoutASoul How did you get a neurologist referral? My GP won’t.

@CherryRipe1
A couple of years ago I had a post viral malaise panel done by a different GP and these were the results.

I expected it to be positive for past EBV as I had glandular fever when I was younger (recovered fine)

What do you think they are missing?
It sounds very much like you have had extensive work up and nothing pathological has been found
Your GP has done what they should.. investigate and rule out disease and now has referred you to the appropriate clinic.
I'm not sure what else you think they can do ?

@Mumsday yes so are all mine ie crp, ESR, anti ccp, dsdna. The only things that aren't are rheumatoid factor, slightly elevated ferritin, ana pos, la positive and fine speckled ENA. The ENA is quite important. Some people are seronegative on tests but still have an autoimmune condition. They're weird unpredictable things at times & hundreds of them.
If your gp won't do a neurology referral you could do a one off private consultation if it's affordable and then get referred back to the NHS if necessary.

@CherryRipe1 thanks, that’s helpful.

Which autoimmune disease do you have?

Unfortunately, the answer is that I gave up on my GP after the fantastic one who was helping me left the practice. I paid £40 to spend an hour with a private GP who went through all blood tests, scans, symptoms etc. She wrote me a referral letter and I spent £125 on an appointment with a consultant neurologist at a local hospital. Not money we could easily afford but I was on my third year of symptoms and couldn’t get anywhere with the GP.

@Mumsday that's very interesting re post viral malaise testing. I've read a few things about reactivated ebv and cytomegalovirus triggering autoimmune conditions.

@Mumsday I have Sjogrens syndrome and possibly fibromyalgia. I kid you not, loads of my friends and acquaintances have autoimmune conditions Crohn's, as, ra, UC, thyroid conditions, fibro, cidp, lupus, psoriatic arthritis, MS. It's bloody endemic.

Do you think it could be MS @CherryRipe1 ?

It has crossed my mind but I’ve had several MRIs which are clear (although not specifically looking for that) and I don’t have pins and needles etc

If you had a brain & spine MRI they'd be looking for lesions to rule out MS I would have thought as my 2 MRI s checked for this & ruled it out, but you'd need to check your report. Lots of things mimic MS. Fibro, Sjogrens, stress, Coeliac, vitamin deficiencies. Gooduck OP, hopefully it's nothing. A fair percentage of people have raised rf and ana & have nothing wrong with them!

Have they checked for pernicious anaemia? If B12 was low last time could be worth checking again

Hey OP, I could have written your post myself a few years ago - I think I had all your symptoms, plus random unexplained bruising. I gave up after being dismissed by my GP countless times, I swear my GP thought it was psychosomatic as all my tests kept coming back fine. I won't write out my life story, but through working with a different doctor (and paying for some things privately), all my symptoms ended up being resolved through first of all, high dose iron supplements for first 6 months or so, and then in the end going completely gluten free. I do believe since taking gluten out of my diet, my body is actually able to absorb iron properly.

Sounds like low iron to me. It could be all the less common things that people are suggesting but iron is the obvious thing to rule out first.

@CherryRipe1 the MRIs were of the spine, specifically to look for the cause of my back pain. But I think they were only looking for inflammatory conditions, not lesions. I really don’t know.

same here.... :(