Suspect mast cell disorder - who to ask my GP to refer to?

[Hebe2020]

Hi everyone, I joined health unlocked initially to discuss my recent vitamin B12 deficiency which is not being treated in accordance with the NICE guidelines but suspect it is associated with the varied health problems I have had over the last few years.

I have the holy grail of a telephone appointment with my GP on Monday when I will ask her to refer me to a haematologist to discuss possible mast cell disorder. In brief, for many months last year I suffered painful and frequent cystitis, often with no identifiable UTI. I suffered a bad reaction to a topical oestrogen tablet suggested by a consultant - bad cramping, confusion etc. and in desperation agreed to go on HRT in February. I am a 57 year old woman.

I had also had a few incidents of severe indigestion and heartburn, accompanied by anxiety and anger and frustration, in the last year or two.

The cystitis died down but within a couple of weeks I had a big cold sore (herpes) which I haven’t had for years. Just after lockdown and after a couple of days of feeling very low and tired I came down with a painful, itchy intermittent rash with flaring and burning skin accompanied by headache and real fatigue. If I tried to do anything one day I would wake the next exhausted and also suffered with insomnia. The only things that got me through it was anti-histamine tablets and paracetamol helped with the pain.

My GP triage service was unhelpful - no continuity or understanding of my condition. In the middle of this I had a another severe outbreak of indigestion and heartburn and was prescribed omeprazole, which seemed to clear it up.

The skin slowly improved but I was still exhausted and had various blood tests showing increased MCV and a B12 deficiency.

I am currently going through a flare up of indigestion, and am also suffering anxiety and palpitations, I suspect from the stress of battling to get appropriate treatment. Frustratingly I have BUPA cover but the GP must refer.

My query is, can you please recommend appropriate specialists in mast cell disorders? I can get a referral under BUPA but need to know where to go for appropriate knowledge as I understand these conditions are relatively rare. Are there any units that specialise? I am in Wiltshire but most appointments seem to be by telephone or online anyway.

Thank you in anticipation of your help.

🙏

[Jess-UKMasto Partner]

Hi Hebe, that sounds like a whole lot to manage all at once. The approach for considering whether mast cells are involved in your many symptoms would ideally involve a thorough assessment that rules out other explanations in the process. If you pop us an email at [e-mail] we can think through the options for approaching finding a doctor. The choices are not numerous, unfortunately! Very best wishes, Jess

[Hebe2020 in reply to Jess-UKMasto]

Thank you, Jess, I’ll do that now.

🙏