synacthen query

[dolphin39]

Some months ago the medical centre clinical pharmacist phoned me to check my medication and advised that I attend for my esr blood test. As I had reduced pred to 4mg following advice from this site and feeling somewhat weary, I asked if I could have the synacthen test. She agreed and fixed the date of my next appointment. I duly attended the medical centre and the nurse took a blood sample and I asked what about the synacthen test. She said she had just done it. Needless to say, all I got was the esr result. I have heard nothing further from the centre. Now I am down to 2mg a day, is there any point in asking for the test? Can I assume that as I am still alive, the adrenal glands must be working?

[SnazzyD]

Hmm. A Synacthen test is unmistakable in that they put in a cannula and take a cortisol blood test. They then put in the artificial hormone that pretends to be the real one that shouts at the adrenal glands. You then sit for half an hour. Then they take the blood test again. Is that what happened? Normally it is done under a hospital setting because of the need for rapid processing and specific storage that can’t easily be done form a medical centre unless they have their own equipment.

[dolphin39 in reply to SnazzyD]

I had read about the test on this site, so I knew this was not what I was getting, but the nurse apparently didn't so there seemed no point in pursuing the matter then. My doctor has been invisible and protected by high walls since the beginning of the first lock down, so I have been entirely reliant on this site.

[SnazzyD in reply to dolphin39]

It is possible that whoever booked your test didn’t know what was involved and thought the blood taker would just look it up and do the right bottle. However, it doesn’t explain why the blood taker didn’t bring it up. Some docs do a cortisol test and then decide based on that if a Synacthen is appropriate. At 2mg my adrenals were much better but I soon knew about it if I had anything extra to deal with like a long journey, stressful day, shock etc. Even when I had a normal Synacthen at 1mg/1.5mg and felt pretty good, I still would have days when I just ran out of juice and still couldn’t cope easily with anything extra. Even six months after stopping Pred, I had a small collapse when we dropped off my daughter at her new home, having left home. Stressful drive, early start, lumping boxes, very emotional etc and suddenly at 3pm I had to lie down. I felt nauseated, shakey, no oomph, weak and panicky in the way when one’s body is in trouble. Recognising this of old, I popped a mg of Pred and lay down for 2 hours. Right as rain after that. So in a way, a normal result if you’re feeling ok already, doesn’t mean you can let down your guard for some time. Carry that card and some spare Pred.

[dolphin39 in reply to SnazzyD]

Thanks for your reply,, i agree with your first points. You have explained why I have days with no energy at all, not sure if a home cortisol test would leave me any wiser.

[jinasc]

That was an ordinary blood test and no it is not a Synacthen test, this can only be done in a Hospital.

You could ask your GP to book one, alternatively ask for the Cortisol Test which is done at 9am in the morning normally in the surgery.

At 2mg I would assume they are working - the test will show how good etc.

Remember once you do go into remission, you must carry your Blue Steroid warning card to at least 1 year. This is to ensure that if you do need medical attention they then are altered that your glands may not be up to speed - it can take up to a year for those glands to be fully functional.

[dolphin39 in reply to jinasc]

It is very difficult getting through to my medical centre, I notice that a firm is advertising home cortisol tests, would this be a solution do you think?

[Rugger in reply to dolphin39]

The home cortisol tests seem to be from a saliva sample and quite different from the 9am cortisol blood test that can be done at your GP's surgery. You just go up for a 9am appointment, having not taken your prednisolone for at least 24 hours. The result will give you an idea of how your adrenal glands are functioning.

Mine were under par, so my Rheumatologist then arranged a Synacthen test at the hospital - it's not a test to be done at the GP's.

[dolphin39 in reply to Rugger]

Thanks for info

[jinasc]

Sorry Dolphin, but I am a suspicious person and I know I would not go down that route. Mainly because I could not rely on me reading a piece of paper.

You are also paying a company for a test you can get on the NHS which you already contribute.

I would be pushing that medical centre and also complaining that you asked for a Syn Test and were given an ordinary blood test and that person should be told the difference. If it happened to you it could happen to anyone else and they might not have the savvy to realise what you did and then be in a bigger mess.

[PMRpro Ambassador]

Oh dear - I don't mind people not knowing something, but they need to KNOW they don't know when they are in that sort of job! She could easily have done a basal cortisol test which is the first part of the synacthen test and would also have provided some information about your adrenal function. I've sat waiting a few times at our phlebotomy clinic while the nurse rings the lab to ask what she has to do for a test - though for a synacthen test they need the stuff ready and waiting so needs to be done ahead.

Unfortunately I don't think you can assume they are working perfectly - if at all. One lady on the forum was a 2mg and felt fine but her rheumy always did a synacthen test once patients were down to 2 or 3mg pred - where they discovered she had no adrenal function at all. It has always been said that we need the equivalent of about 7mg pred to function but more recent work claims that we can do fine on 2-3mg pred for day to day needs, it is emergencies where it may go wrong. There are plenty who struggle a long way before 2mg though!

[dolphin39 in reply to PMRpro]

Thanks for info, I had assumed the 7mg requirement was correct, so I thought I was OK. I was actually at 2.5 in early January and it took until 5 weeks ago for me to feel well enough to do the gradual drop to 2. I felt alright for the first 4 weeks, then felt pretty limp this last week.

[PMRpro Ambassador in reply to dolphin39]

There really isn't a definitive dose that you can say is OK - some people absorb a lot less of an oral dose than others so are getting less than they think.