GP just not listening

[CCottrell93]

I was diagnosed with UP in 2017 and at the time I had a serum tryptase blood test which came back normal. I was prescribed 40mg of loratadine a day as a preventative measure which I still take a of this day. At the time I was also told I have B12 deficiency. Recently I have been having reactions to random things and in a way that I haven’t before. Usually I would just get a rash, intense itching and feel generally unwell for a while until it passes however lately things have changed.

I have been having episodes of flushing, nausea, palpitations and lightheadedness. It usually passes in a short space of time but I’m left feeling groggy and tired for hours afterwards. For the past 18 months I have also been experiencing joint pain, a deep ache that is aggravated by exercise and doesn’t improve on rest.

Today I had an appointment with a GP who at best seemed disinterest told me that UP isn’t the same as mastocytosis and that if I’m concerned about my joints I should try taking Vitamin D and see if that helps improves things. I’m feeling a little deflated as it has taken me a while to get the courage to talk to my GP about my concerns to have them dismissed.

I’m not really sure where to go from here, every day seems to be struggle. Fighting between being in pain and just plain exhausted I’ve given up much hope on being listened to.

Any advice would be appreciated.

[Jess-UKMasto Partner]

Hi C, Your GP doesn't understand because it's a rare disease and they probably have very little experience. UP is a form of cutaneous (skin) mastocytosis. In most adults, UP is one symptom of systemic mastocytosis, though not every adult has SM. I would be happy to send you along some information that you could share with the GP to help them get oriented. I wonder if there is another GP in the practice you could reach out to or whether your practice is not open to that? Do you already have epipens? If you would send me a pm perhaps I can email you some materials and we can strategise about how to get you the care you need.

The vitamin D could be fine, fwiw. There is some evidence that it has a positive effect on mast cells (and normal doses for healthy people).

Very best wishes,

Jess

[dobbo2021]

Hi. Please ask for a referral from your GP to a immunologist. The same happened to me. I began reacting and feeling very unwell after even a mouthful of wine or alcohol generally. My gp told me to just stop drinking but I said there must be a reason for it and asked to be referred. I saw the immunologist who diagnosed with systemic mastosytosis , then I was referred to haematology where I’m checked on a regular basis. That was 15yrs ago now. I can generally manage it through diet but sometimes it gets the better of me and I suffer for it which leaves me exhausted. Good luck