Does anyone living in the UK have experience of requesting a referral under the NHS from Scotland to England to see a MCAS specialist? I have requested a referral through Occupational Health to a specialist in England, currently waiting to hear if this has been successful, or most probably not!
So the answer was no re cross border referral. I have also been discharged from Immunology as Consultant says there is nothing more he can do for me as he thinks it is unlikely i have MCAS. I still believe based on symptoms, response to treatments and based on methylhistamine urine result that I have MCAS. However, I am now in no mans land with no consultant involved in my care, I have been bounced back to the GP.
Krissy, hello again! Have you managed to get yourself out of no man’s land yet? Any answers on your condition?
I don’t have MCD, remember when I went to see a new specialist for a second opinion on my diagnosis. The thing that terrified me most was the possibility that he might say my diagnosis was wrong. Gulp and then I’d be back to square one.
Drop a line to let us know how you are doing.
Seenie from Moderator Support
Following discharge from Immunology I was advised to make a GP appointment to discuss possibly stopping Levothyroxine as the Immunologist suggested my symptoms may be related to this. I did not believe this to be the case but as suggested by an Endocrinologist had bloods for TSH levels - within normal range for someone on thyroxine. My GP appointment was with a GP trainee who was lovely, she listened to all my concerns, symptoms being in no mans land again etc & said she would discuss with her mentor (experienced GP). Phone call later in the week suggesting my symptoms were early menopause & to have FSH bloods checked (this was all done 2 years ago but now being told results would not be accurate due to medication I was on). Ive stopped this medication and booked in for bloods beginning of next month. Very frustrated & will be angry if it turns out to be early menopause as that I was I initially thought 2 years ago when I went to the GP. Ive put cross border referral to MCAS specialist on hold until I know blood results.
I’ve worked in a pharmacy for 17 years – not a pharmacist because I don’t have the math – but over the years I’ve learned a bunch.
One thing I’ve learned is that some people don’t do well on Levothyroxine. It’s AB rated by the FDA, which means while it’s considered a generic interchange for Synthroid, it’s not identical like an A rated drug would be and some people do have strange issues when on Levothyroxine. Even though your levels are okay you could be having a reaction of sorts. It might be worth checking into as you check all those other things.