Synacthen test - update

[Liby57]

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.

[DorsetLady PMRGCAuk volunteer]

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.

[Liby57 in reply to DorsetLady]

I’m not sure how they happened, I am quite amazed considering the difficulties and backlog the NHS is experiencing.

[PMRpro Ambassador]

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.

[Blearyeyed]

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

[Liby57 in reply to Blearyeyed]

Thank you. Best wishes to you.

[Liby57 in reply to Blearyeyed]

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.

[PMRpro Ambassador in reply to Liby57]

I think you must be an exception - GM hasn't been the happiest hunting ground for a lot of people.

[Bcol in reply to PMRpro]

Think it might depend on which of GM you are in. I've not had any problems with getting appointments relatively quickly either.

[PMRpro Ambassador in reply to Bcol]

Mmm - but the quality of rheumy has been debatable ...

[Bcol in reply to PMRpro]

Can't comment on that one as fortunately!! I've not got a Rheumy.

[Liby57 in reply to PMRpro]

Which Rheumatologist are you referring to?

[PMRpro Ambassador in reply to Liby57]

No-one in particular - just there have been several complaints over the years about difficulties finding a good one in the NW in general, and not just on PMRGCAuk

[Suffererc in reply to PMRpro]

Not just GM either

[Suffererc]

Likewise. Other than Rheumy, I have had appointments quite quickly.Think slot of hype is due to the media.

[Liby57 in reply to Suffererc]

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.

[Suffererc in reply to Liby57]

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

[Liby57 in reply to Suffererc]

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.

[Suffererc in reply to Liby57]

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

[Liby57 in reply to Suffererc]

I don’t know about the whole of Walesvbut certainly NW

[PMRpro Ambassador in reply to Suffererc]

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 ...

[Liby57 in reply to PMRpro]

Dreadful

[PMRpro Ambassador in reply to Liby57]

I have a little list of areas I could not live in the UK - well, not so little really Kent and Wales in general are high up!

[Suffererc in reply to Suffererc]

generally known

[Suffererc]

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.

[Liby57 in reply to Suffererc]

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.

[Suffererc in reply to Liby57]

Suppose that makes sense. So I will ask again in a while

[PMRpro Ambassador in reply to Liby57]

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.