Synacthen test results

[Bluey-1]

Update on Synacthen test results from 26/4/24. Thought this may be of interest.

9.20 cortisol blood test - 220 (better than cortisol test on 26/3/24 - 131)

Post Synacthen test bloods - 362

Below normal (420) but ok. Must stay on 3mg pred.

Endocrinology nurse rang today (29/4 - so speedy) to discuss and said letters will be sent to myself and GP. I will get two appointments, one with the endocrinology nursing team and one with an endocrinology consultant (whoever has earliest availability). I even had the pre Synacthen test phone call during our holiday in Portugal! Great service.

Discussions will take place at the appointments about next steps, very slow taper. I’ve asked for her to include a request for 2.5mg gastro resistant tablets to GP.

Just wanted to say I’ve been really impressed with the care I’ve had, so far seems to be joined up thinking across primary care, rheumatology and endocrinology.

Thought it was worth sharing as I welcomed the posts on this site about basal cortisol and Synacthen tests. There is so much to learn about this condition and the medication to control it. This site has been a godsend in support and reassurance. Shout outs to PMRpro, DL and Snazzy for educating me on the perils of GCA and the hope that I will go into remission one day.

[SnazzyD]

Good to hear that things are working with both the system and your adrenals. My Endos were quite cavalier I thought as with similar numbers they said keep going down at 1mg per month. I refused and did 0.5mg every 8-14 weeks.

[Grammy80 in reply to SnazzyD]

I just love it when the patient KNOWS! and says it. The forum taught me that.💞💞

[SnazzyD in reply to Grammy80]

I still sat in my car afterwards and cried! It is so stressful arguing with doctors. At the time I felt so bad already that fear of going any faster drove my ‘fearless’ response.

[PMRpro Ambassador]

"so far seems to be joined up thinking across primary care, rheumatology and endocrinology."

That must a first!!!!!

[Bluey-1 in reply to PMRpro]

I’m keeping my fingers well crossed it continues smoothly!

[PMRpro Ambassador in reply to Bluey-1]

Hope it does. But those results show there is life in those adrenals! Just need waking gently ...

[Bluey-1 in reply to PMRpro]

I know, I’m pleased they show life and the discussion with the endo nurse reiterated a very slow taper. She was clear I was to stay on 3mg for now.

[PMRpro Ambassador in reply to Bluey-1]

At least they are sensible!!!!!

[Bluey-1 in reply to PMRpro]

Just been sent Endo appointments. June for consultant and July for nursing team. So far so good…

[Telian in reply to PMRpro]

Jumping in here pro but what does a 9am basal cortisol reading of 562 mean? I’m on 5.5mg pred

[PMRpro Ambassador in reply to Telian]

Impressive!!!!! A level for basal cortisol that is above 450 is considered indicative of normal adrenal function. The range for normal basal cortisol is quoted as 140 to 690 though I would have thought 140 was a bit on the low side and would require a full synacthen test to investigate the reserve function available.

[Telian in reply to PMRpro]

Well thank you I’m happy with that but I do have the same symptoms that can indicate low function. My GP just said my readings are in the normal range. I read that a high reading can cause the same symptoms as low? I’ll discuss with Dr Mackie. Thank you once again.

[Bluey-1 in reply to Telian]

I envy you…

[Telian in reply to Bluey-1]

Must admit I was very surprised because of how I feel. Better than being low though. Thanks.

[Grammy80]

Bluey...things sound pretty sunny!! Really, so happy for you plus it sounds as though you are feeling good about where you are.....and you should.💞

[Bluey-1 in reply to Grammy80]

Ah thanks Grammy. I feel good that I’ve had such support on here and also that I’ve not (so far) had to waste precious energy arguing with doctors. There was just the one locum nurse at our GP surgery eight months ago who questioned why I was there for blood tests prior to a zoledronate infusion. She was running late, I’d fasted as been told to do so, hadn’t taken meds. After her trying to argue with me for five minutes I just burst into tears, not like me as I’m usually practical and organised with my questions. I hear she’s now a permanent member of staff. I wrote a letter of complaint and avoid her like the plague.

I’m not surprised my cortisol levels are low but at least there’s a little life there, slowly slowly does it…thank you.

[PMRpro Ambassador in reply to Bluey-1]

Not her place to question a patient why they are there for blood tests - if she is going to question anyone it is the doctor who requested them. And blood tests before a zolendronic acid infusion is perfectly justifiable - calcium and vit D levels at the very least.

[Bluey-1 in reply to PMRpro]

Quite. She hadn’t read further down my notes to see what was being requested by the Fracture Liaison Service (FLS). She was in such a bad mood she requested tests for everything except calcium! Had to go back and have that done. The notes on my record from the FLS indicated they weren’t impressed that bloods were done but not what was requested. My infusion was delayed as a result.

[PMRpro Ambassador in reply to Bluey-1]

I'd have been furious - hers not to question, hers to get on and do it. She cost the NHS money and you time. And since I assume you told her it was for a bisophonate infusion - if she is so clever, she should have known calcium was essential.