Endo ZOOM appointment, Adrenal Insufficienccy or Mast Cell Activation

[Slosh]

Hi all

I just finished a zoom with a Dr Zachariah. Anyone know him. He practices from the Spire - Gatwick and another hospital too - I think Brighton.

He thinks the low blood pressure, heart racing / wobbles is probably due to adreanl insufficiency / suppression.

I am of the opinion that it could be but that it is probably or also Mast Cell Activation (Histamine release) related. Have been referred to Guys Mastocytosis clinic. No date yet.

His plan of action to get me to reduce Pred is to use Hydrocortisone as well. So I will take 10mg Hydrocortisone in th emorning and 5 mg at night over and above my Pred dose. (currently doing 7 / 6.5). I will try this for 2-3 weeks to let the Hydrocortisome stabilise and then reduce the Pred by 0.5mg every two weeks.

My 09:00 fasting cortisol ordered by my gp was appparently fine. CRP was also fine appartently but Ferritin was 450! I had very high Ferritin at the outset of PMR too whilsi CRP was in normal rabnge to begin with back then. The constant inflammation from Mast Cell issues is not helpful either.

And just to add insult to injury my GP wants to send me for an abdomal scan to check for an abdominal aortic anuerysm - after a abdominal exam today.

Your thoughts please oh wise and experienced one.

Slosh

[PMRpro Ambassador]

Ferritin is also an inflammatory marker - it is the only one I had that was out of normal range.

There are a few people on the forum with mast cell activation syndrome. I'm sure they will appear at some point.

[123mossie]

Wow Slosh, lots going on with you. I’ve never heard of systemic mastocytosis, hope it’s not that & adrenal insufficiency will be the cause- that will improve hopefully. I have similar symptoms, bad last summer on 3mgm pred but just had another bout of fatigue, low bp & aching muscles on 1mgm. Hope your aaa scan is negative but if not, better know now & monitor it. Let us know how it goes.

[Slosh in reply to 123mossie]

Thank you for your response.

Hope you improve soon.

I have clinically been diagnosed with Mast Cell Activation (different to classic Mastocytosis). Have bad Histamine Intolerance and Multiple Chemical Sensitivity and this has all become worse since having Covid.

Yes also really hoping and praying that the aaa scan is negative. I react so badly to medications that I would be very concerned about having an op.