Serum tryptase blood test

[bcbg57]

Hi, Can anyone advise me. I had my first immunologist appointment by telephone recently and the consultant wants me to have a serum tryptase blood test. I've had one before after I had a private consultation with Professor Aziz in London and it came back negative. My question is does anyone know if you should stop the anti-histamines and mast-cell stabilisers before having it done? I am on cetirizine and ketotifen and take quercetin and Histamine X and Aller Aid supplements daily. Any ideas or opinions anyone please?

Thanks

[Mastomum]

Hi. I was in exact same situation. Immunology Birmingham. I was not told to stop antihistamine or ketotifen. Levels came back normal and I was released( not right word but late) by immunology.

I read that tryptase levels drop quite soon after event/reaction etc so the test I had was pointless.

I wrote to immunologist begging he test further after I was so ill and had several scary episodes, but he got defensive and wrote to my GP saying I didn't believe him. Not one single further test despite severe reactions, rashes, gut and heart issues, osteopania, and more.

So I manage my situation with restricted diet, which is glutenfree, antihistamine s, ketotifen, beta blockers, fostair, avoiding sun, scents, high histamine foods, not overdoing things, stress, heat, cold, certain meds.

I am not a health freak but got so ill I thought I was dying until I took notice of my body..

I really hope you get the support you need. Unfortunately I am the result of a inadequate system. I don't blame the NHS because the system just cannot cope. I feel lucky I am fairly well right now x

[bcbg57 in reply to Mastomum]

Hi Mastomum, thanks for your reply. I have a feeling the same thing will probably happen to me. I am starting Nalcrom (probably this week my first prescription should come through), so although they seem to give us all the medication for MCAS they won't acknowledge that we've actually got the condition which leaves us in a sort of no-mans-land. Still I'm not complaining too much, because at least I'm glad to finally be getting all the medication that I think I need. Just think that much more research into these auto-immune conditions needs to be done. Best wishes to you and stay well. x

[HBEd in reply to Mastomum]

Gosh I sound just like you I have gone on zero histamine diet and fexofenadine and feel a lot better

But scary bp hikes anaphylaxis and heart racing episodes

It feels like you are so alone with it doesn't it

Some seems to get really good care and listened to and others get nowhere

[Cherwin in reply to Mastomum]

Can you tell me if you found ketotifen to cause weight gain?

[Cherwin in reply to Mastomum]

Hi , was the Birmingham Immunologist a private one or were you referred by NHS. I live in Wales and the waiting list is very very long , even the one private Immunologist is booked solid as he only does 1 clinic a week.

[Mastomum in reply to Cherwin]

NHS referal . I in Wales too but just over border so Birmingham was closest immunology x

[Cherwin in reply to Mastomum]

I notice you were on ketotifen before having having the tryptase test…. is this correct if so was it the immunologist who prescribed it. Did you tolerate it straight away … sorry to ask so many questions , I have many similar reactions to you. I have already had a tryptase test done by my respiratory consultant, it came back normal as I expected as I was not in a flair. By reading your post it seems pointless seeing an immunologist if that’s all they do ..except for prescribing ketotifen maybe.x

[Mastomum in reply to Cherwin]

Hi. The ketotifen was prescribed by my GP, after I begged her to prescribe it. Not sure if it helps though. She also prezcribed Bisoprolol to control my tachycardia which occurs during severe reactions The immunologist did give me tips to treat a severe reaction.

A, Take cetrizine daily. Two or three if needed.

B, Always carry BENYDRIL (Acrevestine) and open capsule into water during severe symptoms,

I do suspect I may have cutaneous mastocytosis because of strange mottled freckles on arms and odd lessons, one of which sometimes bleeds.

I am hoping to be able to see a private specialist in near future as no chance with NHS.

I did have years of gut issues too and now follow a gluten free low histamine diet which really seems to help control my reactions. Don't know if you do Instagram but I am on there championing

my gf low hist life. @ajsdeliciousglutenfree Hope this helps x

[Cherwin in reply to Mastomum]

Yes it does help thankyou.I have asked my GP about ketotifen but he said he couldn’t prescribe . I take fexofenadine 2x180 and have an inhaler. I have not tried Benydril. Dr Tina Peers seems to have a good background on Mcas and HIT she has private practice in Surrey, she has also done many podcasts and you tube videos. I will look up and follow you on Instagram, it’s good to have the support on SM.x

[Cherwin in reply to Cherwin]

Sorry I can’t find you on Instagram on ‘my gf low hist life’ …?