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…).

[NewtoGCA in reply to SnazzyD]

Hello. Just reading your posts as I’m struggling myself reducing and have been referred to endo soon. My GCA was 3 years ago and had lots of flares first couple of years. Was on MTX as well as pred but stopped as side effects awful. My pred is up and down like a yoyo and I’d love to finally get off but recognise I can’t. I go very slowly, down 0.5 at a time and stay for good 3/4 m on maths before I dare to try to go down again. It makes me so unwell and my PMR flares so I end up back up and start all over again. I really don’t know what to do for the best, my husband thinks it’s not worth it and I should stay on higher base level. Is it normal that it affects my muscles so much I can hardly walk and often my legs are like lead weights and sometimes just give way. I get so weak and feel nauseous, light headed. The latest is I’ve noticed lots of dark marks in various places on my body that I didn’t have before, kind of like liver spots but they’re appearing everywhere!! Sorry for long post and ramble but any input advice greatly appreciated. I’m so drained. I’ve thought of asking here before but just get overwhelmed.

[SnazzyD in reply to NewtoGCA]

If your PMR is flaring then that has to come before the adrenal recovery. You are 3 years in having had some yo-yoing. What have you gone back up to and how have you reduced?

I got a load of liver spots and raised brown patches. They reduced over time once I got to very low doses and after a time on zero.

[NewtoGCA in reply to SnazzyD]

My GCA is stable, lost sight in right eye, left eye now ok. PMR has flared with tapering. I managed to get down to 3mg very briefly, went back up to 15, got to 10 and been slowly going down 0.5mg at a time, I struggle so much I stay for minimum 3 months before I even try to go down another 0.5mg. I’m on 7.5 at mo.

[PMRpro Ambassador in reply to NewtoGCA]

Generally you don't need to get that high to sort a flare due to overshooting the dose you need. You add 5mg to the dose where you flare for up to 2 weeks and go back to where you were good at before. But you need the dose that keeps your PMR under control. And I also agree with your husband - there is no point forcing to get to the lower dose when you need more. In the end you take more pred than if you had stayed at the higher dose without yoyoing.

[SnazzyD in reply to NewtoGCA]

will your doctor support you if you do 0.5mg per 3/4 months? Sounds like you need to introduce the new dose in rather than doing a step down.

[DorsetLady PMRGCAuk volunteer in reply to NewtoGCA]

Are you okay at 7.5mg? If do, then stay there for a few more months -at least it will give your adrenals a chance to catch their breath.

When you reduce although only stepping down 0.5mg a time are you using one of the slower tapering plans we talk about as well? You might find they help as well as only 0.25mg a time (if you can cut tablets into quarters).

But just stay put for now-you might find not worrying about reducing actually takes the stress off you.. until you are ready to try again.

plans available here - just have a look and see which you think might help you -

healthunlocked.com/pmrgcauk...

[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.