Undiagnosed edema and fatigue / breathless a year later - time to go private? But to who?

[IncessantNameChanger]

I posted this time last year.

I have long term fatigue - maybe 7 years plus. I was eventually diagnosed with sleep apnea and use cpap but was still tired.

Then I was getting burning muscle pains in my arms just hanging out washing, breathless and burning muscles on the slightest exertion and really sudden edema in my ankles and face ( eyelids) I have had edema in my hand for years.

I have been on four types of antihistamines daily for three months for the edema and I asked the gp if I can have cortisol tests ( in case its cushings ) and allergy testing. The gp initially asked why I wanted allergy testing. I asked if I'm going to be on antihistamines for the rest of life so they agreed but said the wait is 12 months.

Lots of bloods and not was outside of limits except my vit D which was within limits but rheumatologist said it was too low. Felt less tired on supplements but still swollen.
My symptoms are

High blood pressure
Fluid leaking into retina
Edema esp eyelids, hands, ankles
Fatigue, muscle pains, breathless
Twice a week or so I get stomach pains and runs but no idea of food triggers.
Low mood ( but got a disabled child)

I now need to go private as I have exhausted what the NHS will do. I can't stay on antihistamines for life.

Any thoughts on what I need to pursue privately? Conective tissue disease antibodies was OK with rheumatologist so not sure if it could be thyroid

I am sorry to read that after a year you are no further on.

Do you have access to those blood results so you can see what the actual figures are and where they sit in the reference ranges? That might be a starting point.

Otherwise, you are going to be guessing at what specialism to aim for.

Are your kidneys ok? Just thinking of the oedema.

Yes I have access to them all via my nhs app except the rheumatologist tests but I was told verbally they was within normal range

Did they do a thyroid function test?

Is 'fluid leaking into retina' an ophthalmologist diagnosis?

Yes. It's in my macular and put down to high blood pressure.

Yes but just the basic tsh one.

@IncessantNameChanger , have a look at pheochromocytoma and see if you think it might fit. Diagnosis would require a very specific 24h urine collection, it's very rare and unless it's thought of, the test won't be done. I do hope you don't have to go private - you'll see the same doctors as you would in the nhs, in all likelihood! Good luck