Short Synacthen Test results

[Bopants]

Hi, I got the results of my Short Synacthen Test last week. My basal was 30nmol/L and at 30 minutes 209nmol/L (it looks like this was adjusted down from 264). I had only just got to 3mg Prednisolone. My previous results (2 years ago, when I was on 5mg Prednisolone) were 31 and 94, so this looks like an improvement. What would the adjustment of figure be for? Does it make a difference between men and women, as I see my sex has mistakenly been put as ‘M’?! How does this compare to other people’s SSTs? I’ve been on pred for RA for 16 years, so I know I have to go slowly… I’d love to know anyone else’s experiences. Thank you

[PMRpro Ambassador]

I don't know - can't find anything yet! - but the adjustment may be because of the type of assay used for estimating cortisol, there are a few options I think, and there may be a standard adjustment so all results mean the same. There are differences in cortisol levels between men and women but I'm not sure of the significance in the SST.

I would say that the 3mg pred is still suppressing your normal production of cortisol but the adrenal glands are capable of producing more when kicked hard with synthetic ACTH. That doesn't mean that your HPA system is fully recovered and all functioning smoothly. That basal cortisol is very low but the response is definitely improving!

[Bopants in reply to PMRpro]

Thank you for the reply, I’m guessing an endocrinologist should know about the adjustment, and also the differences between sexes? I’ll keeping going very, very slowly. Going to stay at 3 for another month or so, then try 2.75🤞

[PMRpro Ambassador in reply to Bopants]

Should do. It is just a suggestion as I know it is the case for some other tests - and there are some where there are two values, total and something else such as "protein bound" that are also significant.

But here - as slow as you like, the lower the slower the better!

[Bopants in reply to PMRpro]

Thank you, wondering if SnazzyD could help with this, but don’t know if she’ll see this?

[PMRpro Ambassador in reply to Bopants]

SnazzyD - do you know anything about adjusted cortisol levels and the question Bopants is asking?

That's her tagged so she should see my reply to you.

[Bopants in reply to PMRpro]

Thank you, also interested in SST results at different dose ages of Pred please

[PMRpro Ambassador in reply to Bopants]

I don't think you will find anything concrete there - how people's adrenal function recovers is a very individual thing as it depends on a lot of factors, not just pred dose. In general, you would expect it to be less reliable or slower in older patients but I know SnazzyD was relatively young when her GCA started and she wasn't on pred that long in the great scheme of things - 54 when GCA appeared 9 years ago and she was only on pred for about 3 years but had a real struggle to get off and not easy since. Read her bio here

healthunlocked.com/user/Sna...

In contrast, jinasc was on pred for 5 years, also for GCA, and was able to taper steadily over 5 years and no related problems that I remember before or after stopping pred - 74 at diagnosis and 79 at zero pred. So some 20 years older so you'd think it might be harder.

healthunlocked.com/user/jinasc

[Bopants in reply to PMRpro]

Thank you, it seems like a really individual thing…

[SnazzyD in reply to Bopants]

If you ever find that research I’d love to know about it. Even if they did check SST frequently enough in a large group of subjects I don’t know how they would allow for the myriad of factors that affect people’s dosing. I don’t think I know anyone with a lovely linear decrease pattern, more like a saw tooth due to circumstance, disease flare, general health, age, etc etc. I don’t know how they would know the impact of resuppression when doses go up in any one individual for example. One could use healthy people I suppose but then the ethics might get a bit dodgy and it would become no longer applicable to people like us.

My Endocrinologists’ educated assumption of my recovery was nowhere near the mark. Even when I felt ill with insufficiency they still suggested 1mg per month and I was not told how long it would take to recover fully. Whether I could cope with a reduction was unpredictable too. I was only checked with a SST twice at 4mg and 1.5mg. The crises I suffered were due to unusual events when on a normal day I felt largely ok.

[Bopants in reply to SnazzyD]

Thank you for your reply, what were your SST results at 4 & 1.5mg please? I’d love to be able to have some sort of comparison with mine… Did you have crises after stopping pred & if so how long after? Or were they when you were still taking it?

[PMRpro Ambassador in reply to Bopants]

I don't think you can go by absolute numbers - the accepted normal range is pretty wide even in healthy subjects and I doubt you can compare two subjects on the basis of numbers alone.

[Bopants in reply to PMRpro]

I understand, any info for vague comparison would be great though…

[SnazzyD in reply to Bopants]

I cannot find the paper copy of my first SST and the online portal post dates that test but it wasn’t particularly great. I could tell because life was like walking through treacle and I was having to sleep for 2 hours every afternoon and my emotions were all over the place. At 1.5mg I was feeling much better in that a normal day was ok though a day out could wipe me out. The SST was 357nmol/l before and 706 after at 1.5mg Pred

My nemesis was stress (emotional or physical) that was sustained. It was like my adrenal glands just couldn’t keep up. Crisis 1 was on 2mg on a lovely day going round some gardens in warm sun after bad night. Suddenly my legs wouldn’t work and I felt empty. Another was either at zero or under 1mg and was due to walking with acute Achilles pain up a Lakeland Fell. Another was a year after stopping Pred after a long flight to St Lucia, sleep deprivation and awful motion sickness in a car. I’m no good with any of those. The next day I couldn’t stand without feeling faint etc. The biggest one was 2 years after Pred with Covid after a week of fever above 39C, excruciating sore throat and little sleep. I needed Hydrocortisone IV from the paramedics for that one. I don’t think about it on an every day basis but I am never quite sure what my limits are now.

However, your journey is very much your own and I don’t think you can gauge what yours will do in either direction. Just be aware that you need to carry Pred with you for a while and a medic alert bracelet or similar when away from home. The main thing is don’t push through if you feel unwell and be aware of creeping symptoms of adrenal insufficiency.

[Bopants in reply to SnazzyD]

Thank you, you had an amazing SST at 1.5mg! I had a response from my Endocrinologist today, he wants me to reduce to 2mg over the next few months & then see him & repeat the SST, I’m staying at 3 until after Christmas though. It’s really interesting (though I’m sure you didn’t think so!) that you had a crisis 2 years after stopping, but definitely brings it home how tricky this is.

[SnazzyD in reply to Bopants]

True but I’m sure Covid brought some factors to the party too, as it insidiously continues to work in the population. There are no certainties no matter how much data one amasses with this PMR/GCA/adrenals game.

[Bopants in reply to SnazzyD]

Yes! Well, I’m curious to see how mine behave (or not…).

[PMRpro Ambassador in reply to SnazzyD]

Sarah did a study with the endos in Leeds looking at PMR patients (and others) who were struggling with the last stages of tapering because of adrenal insufficiency type problems - unfortunately I think they never published it. But they were very surprised at how long it took for adrenal function to recover - they had expected it to be a smooth response as pred dose fell. And as we well know - no it wasn't.

[SnazzyD in reply to PMRpro]

Sorry no.