So far so good, I am still at 0mg although I had a banging headache yesterday and started panicking. All seems ok today though. I have now received my appointment for my Synacthen test which is on 25th Jan. I also have have an appointment for a Dexa scan on 22nd Jan and rheumatologist has requested ESR:/CRP blood tests to be taken on 26th Jan . I am baffled considering how behind the NHS are with appointments and yet all my appointments have come through at once and within a very short space of time after my last consultation. I am quite amazed as I expected a long wait. At least they will all be done within a week. Bit worried about what they might reveal though.
Synacthen test - update : So far so good, I am... - PMRGCAuk
Synacthen test - update
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Ah well, all done & dusted within a short period - hopefully.
No point in worrying before you know any results…waste of time and energy…and may well increase your ESR/CRP levels.
Sure you’ll let us know when you do.
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I suspect they were hanging back in case they got totally flooded with Omnicorn. It is now obvious it won't be quite so bad and they can try to catch up. Plus these are short term appointments - every little helps.
You are lucky , and you will get your answers very soon.
Don't worry about things until you know there is something to worry about.
the anxious stress of worry will bring on headaches and effect your results.
Do activities that are gentle but keep you calm and happy over the next few weeks to keep you more relaxed.
Headaches can just be headaches , caused by anything , especially in this sort of variable weather.
you are on zero and generally feeling ok , enjoy it , hugs , Bee
I think it depends on the Rheumatologist that you have and the location where you live. I do feel very lucky but appreciate very much that the service I have had is not available to everyone, but it definitely should be. I’m in Greater Manchester.
I think you must be an exception - GM hasn't been the happiest hunting ground for a lot of people.
Think it might depend on which of GM you are in. I've not had any problems with getting appointments relatively quickly either.
Mmm - but the quality of rheumy has been debatable ...
Which Rheumatologist are you referring to?
Likewise. Other than Rheumy, I have had appointments quite quickly.Think slot of hype is due to the media.
I think there are lots of delays and backlogs in certain areas. My sister in law lives in North Wales, the service there is appalling and the worse I have heard of.
My daughter lives in N Wales too. We were chatting about hospitals generally and her partner comes out with we have the best services here in N Wales. Think it is her ally known they have the worst
My sister in law’s hospital is Glan Clwyd which is under special measures. It is the worst hospital I have ever visited. My sister in law can’t even get to see or have an online appointment with a GP simply because at her surgery there aren’t any. They only have locom doctors who are never available. It is really shocking and quite frightening.
On line appointments in NW sadly seem to be lacking in many areas. People there think it is the norm all over the U.K. we complain in England but we have a superior service compared to Wales
SW Wales is pretty dire, especially rheumatology. They were handing complex lupus patients to a GP with a special interest and claiming that was them cared for - then he moved somewhere but no-one told the patients! A superb guy moved from the SW to Cardiff and was perfectly happy to continue to see his lupus patients but the WO said no ...
I asked my GP for aSynacthen test when I was tapering to 3.5. She said NO. I am now nearly on 2.5 so will ask again. It would save her a lot of time if she agreed as perhaps I could speed up my taper and be out of her hair.
Mine said he wouldn’t do it until I was at 0mg and had been for a few weeks this would provide a clearer result.
Point is though that the experienced doctor knows how to interpret the results once the patient is about 3mg or so - which is safer for the patient whose adrenal function is being slow to return. Otherwise you may have a patient with no reserve adrenal function left for a long time without steroid cover.