Does this sound like something auto immune to you?

[Catabogus]

I know no one can diagnose me on an Internet forum! But GP appointments are like gold dust and I’d like to go to my next one (which is weeks away, and it’s 5 min by telephone only) armed with a bit of information.

So if I list some of the symptoms below, could anyone please tell me if this sounds like some kind of auto-immune disorder, or if you think I’m just stressed and overworked? I’m 40 so did consider peri-menopause but blood tests show my hormones are all A-ok.

Symptoms:

• hair falling out
• bad brain fog and forgetfulness
• painful feet (stiff and clicking joints)
• gastro upset
• deep tiredness
• very dry and itchy eyes
• red painful patches on tongue
• rad facial rash/flushing on cheeks that comes and goes
• muscle pain especially in hips and outer thighs
• low platelets (on recent blood test - everything else on it was fine)
• easy bruising, purple spots on legs, slow healing (related to platelets?)
• very irritable and snappy and not very fun anymore!

I realise this could be a lot of separate unrelated issues, and I won’t have time to raise half of these in my GP phone call, but I’m interested to see if anyone thinks they might be linked? And if so, to what?

Thank you very much indeed!

Have you had your B12 levels checked? Patchy tongue is one of the many delightful symptoms.

Are you me? Apart from I'm 50 and no muscle pains but instead when I go in the sun I bleed into my skin. All tests negative apart from 'weakly positive' for lupus, not menopausal, vitamin supplements up the wazoo just in case. I'm seeing a rheumatologist next week and hoping for some answers

Worth looking into Lyme Disease. So many people unknowingly have it.

Thanks for the reply! I haven’t specifically had this checked, but blood test showed my red blood cells were at a good level, so I would guess I’m not likely to be deficient in B12 (happy to be corrected if that’s not right?)

This is interesting - thank you. What tests did you have for Lupus? I hope the rheumatologist is helpful.

Thanks for this suggestion - I’ve had a look but can’t see that the symptoms fit (fever, chills, knee pain, neck stiffness, temporary facial paralysis…).

Not medically qualified so don’t know about blood cells excluding B12 deficiency, but my levels were really low and I had the patchy sore tongue and was generally exhausted.Might be worth asking.

It sounds likely.

Make an appointment with your GP and ask for:

CBC
CMP
hsCRP
Full Thyroid Panel:
TSH
FT3
FT4
rT3
Anti TGO
Anti TBO
ALT
GGT
HCY
HOMA-IR using:
Fasting glucose
Fasting insulin

Ask for a copy of the results and bring them to a nutritionist that specialises in gut health. Doctors are notoriously bad at detecting issues that don’t show up as abnormal in blood tests but a nutritionist will look holistically.

Sorry meant to specify they’re blood tests!

Are you medically trained? What about ANA?

@DailyEnergyCrisis ANA if all others come back normal. Many labs won’t run it. Rule out suspects first like thyroid and then move on to ANA if needed.

You are kidding! How much would this cost the NHS?! A GP will only order a test which is clinically relevant and quite rightly so.
This is just the sort of list private medicine is designed for.

@MarigoldPetals which is why so many women suffer on. Doctors gaslight them and tell them they’re ok because standard bloods say so when they only give half the story.

I was wondering that too! I don’t think I can just demand my GP runs all these tests. That’s why I was hoping to get some ideas here of what it might be so I can make sure we”re ruling those out (when I do finally get to speak to him). If I just tell him I want 16 different types of tests I think he would probably laugh!

I have had thyroid levels checked and they were absolutely fine, so not that. I will ask about B12 though.

Sorry - meant to say I will ask about auto-immune though, if you think it sounds likely.

Have you had covid? When?

Most of your symptoms can be long covid. That's not to say they don't need managing (but NHS isn't good at long covid - but I expect it will have to become so)

You have clusters of symptoms. First thing comes to my mind is underactive Thyroid. As you said your bloods were normal so I hope that has been ruled out. I believe if your bloods come normal that you need referral to Rheumatology to rule out connective tissue disorder like Lupus. Anemia need to be rule out as well. Do you have joint pain ? Any morning stiffness? Loss of weight or have you put on weight?

Not as far as I know! Never tested positive, though my DC have had it but I never had any symptoms.

Thanks for this - yes thyroid has been ruled out in the blood test.

i am generally quite stiff and particularly in my feet (not noticeably more so in the mornings) - they crack and are hard to move, and the big toes especially won’t flex properly.

I had gained weight over the past year (decreased exercise as a result of feeling so rubbish, I think) but in the last 3 months have made a real effort to lose weight so I’m back to something more like normal now.

Wouldn’t anaemia show in the blood test? Red and white blood cell count were both fine.

Yes. Anemia is easily traceable with a simple blood test. You need a face-to-face appointment with the GP. Autoimmune disorders could be possible, but you need to see a professional, and I would be very careful getting any advice over the internet.

I would sell my soul for a face-to-face appointment with the GP! Unfortunately they don’t seem to be available.

And absolutely - I do take your warning about being diagnosed on the internet. I’m just trying to get a sense of the questions I should be asking the GP in my phone call.

When I had suspected post viral autoimmune issues a locum ran a load of tests including full blood panel, ferritin/iron/transferrin, ESR, CRP which showed some raised levels/inflammation. My usual GP then ran tests for diabetes (hba1), lupus (dsdna),thyroids, rheumatoid arthritis (anti CCP, rheumatoid factor). The RF can be raised for a few connective tissue diseases & mine was positive & so was referred to rheumatology who ran a load of bloods (and scans). The ones I can remember were ANA titer, ENA, anti smith, SS Ro and La and immunofluorescence to determine the possibile type of connective tissue disease ie RA, lupus, Sjogrens, but there were loads more things they test for in the blood. There has been a big rise in rheumatoid arthritis post Covid. It's basically detective work ruling things in/out. Good luck op.

A GP would much prefer a list of symptoms to an internet diagnosis. You aren't helping them with tangents you have found on-line, the list of symptoms is considerably more useful if you have actually noticed these things than if you have matched yourself with online lists.

Instead, keep a symptom diary, do your symptoms come on together, are you more tired at certain times of the day, do painkillers help, does it get better or worse at times in your cycle. This is the valuable information.

Good luck

Have you considered coeliac disease? Maybe keep a food diary to go with your symptoms diary.