Hi

No not yet

Referred to endocrinology
But not getting v far
UK based
I had 4x amount of adrenaline in my 24 hr catchlomides urine test . I said this is as a result of hist acne levels being really high and the adrenaline triggers to calm it down but she said I know nothing about histamine and that is the role of a hematologist so very disappointing

She is the gateway for me to get help

I've asked gp for a full organ ct scan as endocrinologist didn't request so having that 21st May

I may have mastocytosis as aymtoms are v similar to carcinoid net with histamine release

I will need an endoscope but I need pre meds as I'm v concerned re risk with so much histamine and adrenaline in my tissues and this is not done locally

I've been gas lit and marginalised for 2.5 yrs sadly not uncommon with these conditions

Hi

Still ongoing

As mastocytosis and carcinoidnsyndorme both rare pathways aren't clear and GPS have no awareness
I'm being my own advocate sadly and researching it all myself to get to where I need to be which is slow and disappointing in the uk