Not diagnosed yet - initial immunologist appointment

[yogaginrepeat]

Hi all,

I have had worsening symptoms since birth of my last child 4 years ago - Main symptoms are gynae issues, Gastro issues, episodes of extreme fatigue with flu like symptoms, headaches, dizziness, rashes and new allergies/food intolerances. I get periods of obvious flare ups of these symptoms.

I have seen a gynaecologist and had surgery for endometriosis and also had an OGD done for gastro problems (didn't show anything). My GP has ran blood tests last year (elevated liver enzymes and vitamin d deficiency) and some more recently (vitamin d now fine after supplementing for past year).

She now thinks an immunologist is the way forward. I'll be paying privately as waiting list is more than two years and it's already taken years to get to this point.

What can I expect them to do? Will my GP be able to do some of the tests they suggest to keep costs down?

Any advice much appreciated!

[Stopyourhavering64]

If you have skin rashes it may be prudent to get a skin biopsy done as this can show some autoimmune illnesses
I had endometriosis yrs ago but 2 yrs ago following a viral illness, I became extremely fatigued, then developed iritis, joint pain and finally a skin rash that became ulcerated....had to take 7 months off work as could hardly walk due to pain of ulcers and subsequent peripheral neuropathy due to the Vasculitis attaking the blood vessels supplying the nerves in my feet)
All blood results for autoimmune diseases were negative ( mother and grandmother had RA, so had a feeling I'd develop an autoimmune disease sometime!)
I had this ulcer biopsied by dermatologist which showed small vessel vasculitis , was finally referred to rheumatologist and started high dose steroids and methotrexate ( along with vit D and calcium)
I'll be on medication for at least another 2 yrs but was relieved to finally get a diagnosis

[RightYesButNo]

OP - The fact you have new allergies might be important here. An allergy is your immune system attacking something like pollen, because it mistakenly identifies it as harmful. This could (just one possibility) be a sign of an overactive immune system, one that’s attacking the “wrong” things, and thus signs of an autoimmune issue.

I would recommend checking your thyroid again, as timeistight mentioned, IF your doctor only did a TSH test last time. Sometimes your TSH can be normal, while you can have a low either T3 or T4 separately, and need treatment for hypothyroidism still. I would also recommend antibody testing for autoimmune conditions based on the broad range of symptoms you’re mentioning, as well as the low vitamin D and elevated liver enzymes. Especially as elevated liver enzymes can be a sign of inflammation, which can be related to autoimmune conditions (I have an autoimmune condition and have had low vitamin D, B12, and elevated liver enzymes on a test).

Your GP should be able to run these tests and then allow you to take the results with you to whoever you want, if you’re seeing a private doctor. It’s possible the test results may even make you a higher priority to see a rheumatologist or immunologist within the NHS. The problem is just that your symptoms are so broad that it’s tough to say what any of these tests might show. Maybe a clear answer; maybe still not a clear anything.

Good luck, and I really hope you feel better soon.

[Iwantyourmumtoo]

Have you been tested for coeliac disease and gluten ataxia?

[yogaginrepeat]

Bumping in case anyone has any further advice :)

[yogaginrepeat]

Thanks @timeistight. She did last year when I got thorough blood work done - I don't know what the results were, was just told all was 'normal'? I've got an appointment with a private immunologist next week, if he suggests initial tests such as this I'll see if gp will do them again.

[timeistight]

Elevated liver enzymes and vitamin D deficiency both go hand in hand with thyroid disease, which can produce the symptoms you describe.

Auto-immune thyroid disease often kicks off after childbirth and also goes together with other auto-immune conditions, including endometriosis.

Has your GP thought to do a thyroid check and if so, what were the results?