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?

Why on earth haven’t they checked ferritin? I eat lots of meat and green veg but my ferritin dropped to 6. Felt awful but 3 weeks of iron tablets I was feeling human again.

I don’t know why they haven’t checked ferritin. My full blood count was ok, so maybe they assume I’m not anaemic from that?

What were your symptoms when yours was low?

I had all of those things with anaemia and b12 deficiency. You need your full bloods done.

@Valhalla17 Wouldn’t my full blood count have shown something though? I’m so tired of pushing for yet more blood tests.

I had an iron infusion last year which fixed it after decades of suffering...plus a hysterectomy to stop my ridiculous periods which were the bane of my life...I would flood and leak wearing 3 huge pads.

Now, no more iron issues..

Have you ever had a referral to Rheumatology? Could be Fibromyalgia.

ME/CFS your symptoms are the same as mine and that’s what I was diagnosed with but I am chronically fatigued even with B12 injections

Well the full bloods should have included ferritin..which you didn't get? I would do that as its really the most likely prob

What dose of HRT?

If symptoms cleared up and then came back, you probably need a higher dose.

You can buy vit D and ferritin finger prick tests - why not try that and if the results are abnormal then take it back to the GP?

My hrt has needed tweaking as time has gone on. Might be worth ruling that in or out. Changed from gel to tablets recently and they've made a big change for me

I’ve gone down that route @Mabelface - I was relatively ok on the old oestrogel but then the new bottle stopped working. I switched to Sandrena and am on the maximum dose, with Utrogestan for 12 days a month. I still feel awful but I can’t take any more oestrogen. I even tried reducing it thinking maybe I was on too much but I felt even worse. GP not particularly interested in that side of things.

Rather than buy an over the counter prick test, if you are thinking of getting a test for vit d, ferritin, b12 etc, a more reliable route would be via medichecks or monitor my health. These samples are processed in a lab and they give you results with doctors notes.

And I’m sorry you’re going through this @Mumsday . Me too - it’s really hard.

@MrsMikeHeck Thank you. Are Medichecks reputable?

Our GP isn’t allowed to test for vitamin d anymore. NHS Highland won’t pay for it. It used to be part of the tired all the time panel (TATT) but no longer. 😕

@Mumsday yes, absolutely. I haven’t used Monitor My Health, but will do next time as they are cheaper. They process all tests in an NHS lab.

Re iron deficiency anaemia, it’s possible to have iron deficiency without aneamia and that can make you feel awful. If your full blood count came back normal, it rules out anaemia, but doesn’t rule out iron deficiency.

Medichecks and Monitor My Health are both decent companies.

I work in a long Covid service, could it be that? Sounds very similar to me

It wouldn't show on a blood test either op

Thyroid?

Have T3 T4 and tsh been done?

@sarahc336 I guess it could be. But I want to rule everything else first before they lump me with that, as I know they’ll just stop investigating anything.

@Octavia64 No, just TSH which was normal.

My symptoms are similar to yours and a neurologist diagnosed me with long covid after a CT scan showed mild ground glass opacities in my lungs. You have brain fog and breathlessness which are long covid symptoms. Worth asking for a CT scan.

Have you been tested for other connective tissue diseases besides rheumatoid arthritis such as lupus and Sjogrens (Ro, La, anti smith & dsdna)? The raised ana & rheumatoid factor seems to indicate something is amiss but what? Yes long Covid presents like this. Also look at pots, cfs/me and fibro.