synacthen test update

[Rosina1871]

just received a copy of a letter sent to my doctors by my rheumatologist. Apparently the endocrinology team have advised him that there are new guidelines and a response greater than 420 nmol per litre is now normal. Therefore mine was normal. My rheumatologist advises me to continue with my gradual reduction of pred but if I have a recurrence of symptoms I should not increase the treatment myself but should contact the nurse helpline. I don’t know if that would work. It takes a couple of days for the nurse to get back to me and then a blood test request would have to be posted out. Another two days. Then I have to arrange the test and wait for the result. Am I being unreasonable or is this the correct procedure ? Once a flare starts I thought it best to knock it on the head straight away. Thanks

[SheffieldJane]

That result was better than the one I had (375). I reckon they are just keeping an eye on you. Taking extra Pred would mask the results of a further test, should it be deemed necessary. Are you familiar with the symptoms of an Adrenal crisis? Have a look at FAQs for some further detail. I am aware that if I became extremely dizzy to the point of passing out then taking more Pred would be sensible. I have been issued with an emergency Hydrocortisone injection pack, in the unlikely event that I should experience severe symptoms. My husband, who works from home is primed to step in with this. Obviously an ambulance would then be called. Wobbly, fatigue is a normal reaction to your own Adrenal system kicking into life as you reduce. It seems to be something we have to endure. The key is to reduce very slowly by half a mg at widely spaced intervals. See more detail in FAQs. I hope my personal experience helps a bit.

[Rosina1871 in reply to SheffieldJane]

many thanks. Appreciated x

[DorsetLady PMRGCAuk volunteer]

Found this - re ranges -exeterlaboratory.com/test/c...

and as SheffieldJane says maybe have a look at this from FAQs-healthunlocked.com/pmrgcauk...

[Rosina1871 in reply to DorsetLady]

many thanks for these links

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

... and can you get GP onside in case you need a test done quickly - although hopefully it won't come to that...

[Rosina1871 in reply to DorsetLady]

yes I’d thought about that. Think I would be quite comfortable if the rheumatologist would hand me back to the surgery

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

In theory, they should be more accessible. Not sure that’s always the case…..

[PMRpro Ambassador]

I think if you reduce only 1/2mg at a time and at generous intervals - 6 weeks for example, you should be fine in that if a flare decided to appear you wouldn't be looking at a big deficit and a week delay wouldn't matter. Mind you, the likelihood of the bloods looking dramatic is quite low, they might dismiss them anyway.

[Rosina1871 in reply to PMRpro]

Thanks for that. Makes good sense. I am currently reducing by half a mg every six weeks and I’m hoping to keep things under control as much as possible anyway

[piglette]

Sounds like by the time you get a result from anyone you will have been able to increase the pred, knock the PMR on the head and reduce back and then they will be ready to tell you your blood test results!!

[Rosina1871 in reply to piglette]

sounds like a good plan. Thank you