Short Synacthen Test

[SudsSuds]

Next Monday I have a short Synacthen test scheduled. I have had one before, a long time ago, and I am aware of what the test is for. I am wondering about what levels are regarded as not ok as I cannot see much on this. I have tapered to 3mg of pred. Thanks.

[DorsetLady PMRGCAuk volunteer]

This link explains /

mountsinai.org/health-libra...

But theses are relevant numbers -

Normal Results

Normal values for a blood sample taken at 8 in the morning are 5 to 25 mcg/dL or 140 to 690 nmol/L.

Normal values depend on the time of day and the clinical context. Normal ranges may vary slightly among different laboratories. Some labs use different measurements or may test different specimens. Talk to your provider about the meaning of your specific test results.

The expected result can be outside the normal range if done as part of a cosyntropin stimulation test or dexamethasone suppression test.

[SudsSuds in reply to DorsetLady]

Thanks DL that's very clear. My appointment is 10.00am so I'm guessing the index range would be higher?

[DorsetLady PMRGCAuk volunteer in reply to SudsSuds]

This from AI - which covers a 4 hr slot - so slightly different from previous - but not significantly-

Morning (6-10 AM) Cortisol Levels:

Normal Range: 138 to 635 nmol/L, or 5 to 23 mcg/dL.

[SudsSuds in reply to DorsetLady]

Thank you, very helpful as always.

[PMRpro Ambassador in reply to SudsSuds]

Not really - the concept of using basal cortisol as a screener doesn't care if the blood sample is taken at 8am or 12am - or anywhere in that window. In medicine there are few absolute numbers - there are ranges and ballparks and contexts!

[SudsSuds in reply to PMRpro]

Is this because it is the change from pre ACTH to post ACTH is what is important - not the figures themselves but the difference? As I understand it the test measures if the adrenals are capable of working not if they are working?

[PMRpro Ambassador in reply to SudsSuds]

I think so - the range that is considered normal is wide - a basal cortisol under 100 is considered deficient and above 400-ish to be normal and neither then require an SST to look at the change to see if you can respond to an ACTH kick. But even that doesn't mean a natural response will happen reliably.

[SudsSuds in reply to PMRpro]

Ok. I will ask my rheumy very carefully and comprehensively when I see her next, early May all being well.

[tangocharlie in reply to DorsetLady]

I'm confused reading this. Your answer is about a 9am cortisol test and the question is about a synacthen test? Or have I misunderstood?

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Thanks… Copied wrong figure- range for ACTH test is -

Cortisol level after ACTH stimulation should be higher than 13 to 14 mcg/dL (358 to 386 nmol/L) depending on the type of cortisol assay used and, on the dose of ACTH used.

Normal value ranges may vary slightly among different laboratories.

[marionofnorwich]

I also have this question but trying to understand the meaning , or should i say impact of the results. I am waiting for a 9am cortisol test. I have been told (18 months ago) that i have Adrenal Insufficiency and to say on 4mg for life. I dont want to do this really as i feel suppressed and fearful/under mild threat all the time and don't understand well enough what 'normal' cortisol expectations are

[DorsetLady PMRGCAuk volunteer in reply to marionofnorwich]

When you asked this question previously. PMRpro explained that at 4mg it was unlikely that it would prove a lot as your adrenals would be suppressed or some degree or other by the Pred.

As you were told to stay at 4mg then, have you attempted at all to reduce? Do you have any adrenal insufficiency type symptoms? What about your PMR, have you been encouraged to reduce to see if that’s gone or not?

Have you asked for this current test or has doctor suggested it?

Not quite sure what you mean by ‘don't understand well enough what 'normal' cortisol expectations are’…

[marionofnorwich in reply to DorsetLady]

I have recently reduced to 3.5mg. i tried before Christmas but then went to 3mg and overdid it so returned to 4 to stabilize. Now going slower on 3.5 which i will stick to for a while. I dint think i do feel especially 'adrenally insufficient' at least not deathly fatigue. Yes more tired than i used to be but just doing day to day stuff is more effort as especially my leg muscles get tired. I dont really know what the PMR is doing as i cant separate it out but i feel it is rumbling in the background. My biggest issue is very stiff knees and legs that tire easily. Lower back, neck and shoulders a bit stiff but no worse than i have always lived with. Right knee is very disabling but not warranting a knee replacement. My gut feeling is that i can reduce further but no-one is encouraging anything, just accepting status quo. I requested a 9am cortisol myself. Ref normal cortisol range. I take say 3.5mg and the physiological dose is approx 7mg which equates to a 'normal' unmedicated natural level but when we are stressed or excited those levels rise presumably and then drop again to 7mg equivalent. But if adrenals arent working, does that mean bring perpetually under the required minimum or natural level?

[DorsetLady PMRGCAuk volunteer in reply to marionofnorwich]

Whilst the adrenals are still not working 100% [and studies say that may take up to 12 months after being off Pred completely] then they aren’t capable of that extra flight or fight ‘oomph’ we need at times. So whilst there’s a balance between how much cortisol the Pred is providing and how much natural cortisol your body is creating there’s always likely to be times when you struggle.

I always think of it as driving a car…if you are going along a flat road the pressure needed to the accelerator is constant and all is okay… but when you need to go uphill, or to overtake you have to press the accelerator harder to increase the speed, or you slow down rather than speed up. We are a bit like that when the adrenals don’t react when we need more.

[PMRpro Ambassador in reply to marionofnorwich]

When the adrenals aren't at the top of their game, they MAY respond with some extra, but it probably isn't as much as you would get if you went back to pre-pred. There are ranges of levels found in normal subjects - you are likely to be lower at all stages but some people MAY recover more/faster/better. There really isn't a lot of black or white in medicine, there are lots of shades of grey.

And honestly - most people would be relieved that their doctor isn't nagging at them to taper and get to lower pred. In addition - there is no way of changing that, there is no cure, the only recovery for adrenal function in this case is low pred and time. There is nothing they can do about it, so why would they allocate appointments to someone for whom they can't achieve any more when there are long queues of patients who still need to be diagnosed?

[marionofnorwich in reply to PMRpro]

I am certainly appreciative that they are not nagging me, I am just trying to understand as much as I can so that I can unravel the best way I can help myself really. I suppose as you say, there is no certainty which I understand but I don't want to keep reducing if there is no chance that my adrenals will recover, ever then I might as well find a level of pred that works for me though I am prepared to 'suffer' the reduction if there is at least a decent possibility. To be clear, I am far from a demanding patient, quite the opposite, and my GP surgery is ok but i think sometimes we need to be proactive and ask for some insights where possible, otherwise, how will they know there is a need?

[PMRpro Ambassador in reply to marionofnorwich]

But it is only by reducing and waiting a long time and then checking the basal cortisol that you have any chance of finding out IF it will all sort itself out. Most patients rebell at being asked to endure the feeling rubbish that may well mean.

[Hirondelle in reply to marionofnorwich]

Good morning, Marion of Norwich. I too have been told 2 years ago that I have adrenal insufficiency. I was on 3mg a day until two months ago when a 9am cortisol test showed that my cortisol has plummeted to 62nmol. An endo on the telephone told me that that was that for life and because I am so very tired by the evening, to take 4 mg for life and that there was no need now for me to be seen again at the endo department at Ipswich Hospital. As the GPs have made it quite clear that they are not interested, I am upset and find it extraordinary that I should be dumped by the NHS like this. Grrr.

[marionofnorwich in reply to Hirondelle]

Yes i feel rather the same as though i have been given a diagnosis with no insight about how to live with it or how to help myself or interpret the impact. I am trying out 3.5mg with main issue being weak, stiff and painful knees and leg muscles but not especially tired. A lot less motivated and anxious. I am not normally an anxious person and usually take life in my stride. I havent seen an endocrinologist so far. Need to oysh for that

[Hirondelle in reply to marionofnorwich]

Oysh? Must be a Norfolk word! I realise you must mean push … would you like to meet up one day if you are in Norfolk?

[marionofnorwich in reply to Hirondelle]

Haha!

[marionofnorwich in reply to Hirondelle]

Yes a Norfolk word i just invented . Yes i am in Norwich. I think there are a few of us around here. Are you in Suffolk?

[Hirondelle in reply to marionofnorwich]

Yes, in Aldeburgh. I don’t know anyone else with Adrenal Insuffiency - I asked my gp to write to the endo nurses to see if they would help me get a group together but to no avail. I do think it could help this feeling of isolation.

[marionofnorwich in reply to Hirondelle]

I do come to Aldeburgh sometimes although usually quite a busy trip. Let's keep in touch

[Hirondelle in reply to marionofnorwich]

Yes, please do. I’m happy to come north!

[Italybound62 in reply to marionofnorwich]

I find it interesting that your main symptoms now are stiff and painful muscles. Do they last all day or get better a few hours after you get out of bed? Couldn’t they just be other ailments? I say that because I have similar new stiffness in legs and back muscles since reducing to 3mg which come on while in bed and go away as soon as I get up. I don’t believe it’s PMR or cortisol related. Probably need a new mattress 😂

I will have my first meeting with Endo this afternoon so anxious to hear his plan for me.

[marionofnorwich in reply to Italybound62]

Yes, they last all day and get worse with use. It could be something else - muscle wastage or working harder to support knees but very hard to tell. My gut feeling is that the muscles in my feet, ankles, calves, thighs, glutes and abdominals are both weak but also fatigue abnormally quickly and get stiff easily. I can also feel it in my back, shoulders and neck, wrists and arms but that tends to have less effect on my daily life. Am going to try Ibuprofen for a few days and see if that has any effect

[PMRpro Ambassador in reply to Hirondelle]

Honestly - most people would be relieved that their doctor isn't nagging at them to taper and get to lower pred. In addition - there is no way of changing that, there is no cure, the only recovery for adrenal function in this case is low pred and time. There is nothing they can do about it, so why would they allocate appointments to someone for whom they can't achieve any more when there are long queues of patients who still need to be diagnosed?

You have been offered the most appropriate replacement therapy - they don't have much else they can offer you. I'm sorry if I sound unsympathetic in any way, I'm not. But the NHS is in a mess and they are fire-fighting. Your fire is out, the sprinkler system is primed and operating, you can plug along with your GP and rheumy as backups.

[Hirondelle in reply to PMRpro]

Sorry but less you have had Adrenal Insuffiency you can’t know about all the spin offs that fell one.

[PMRpro Ambassador in reply to Hirondelle]

I have - I have been on pred for 16+ years.

[Hirondelle in reply to PMRpro]

But that is not “A Life threatening condition” which is what is drummed into you after diagnosis with SAI. You have to carry an emergency kit for self injecting, you need a lesson on how (and where) to do this from the Endo nurses. You need to know about the Pituary Foundation and the Addisons Diseases Self Help Group (also for Adrenal Insufficiency )…otherwise how would I have known that Pfizer had stopped making the ready mixed cortisol powder for injecting and we had to go back to two vials which have to be mixed etc etc. (I can’t do it because of tremor in hands).

[Angel_doll in reply to marionofnorwich]

I am in a similar situation. I was tapering from 3 to 2.5 when the rheumy sent me for a synacthen test. When he saw the results he told me I have to take 4mg for life. I had a f2f with him recently and queried the decision. Apparently it came from the endos, so he will refer me to them for a full explanation!

[marionofnorwich in reply to Angel_doll]

Do you know the results? I haven't seen an endo but I did say that I thought I could reduce further and he was happy that I could try, and I have dropped to 3.5mg recently. Just waiting for a 9am cortisol test result but really do feel that I am managing this myself. But at least not encountering resistance!

[Angel_doll in reply to marionofnorwich]

Extract from the letter:

“Mrs Hale's short Synacthen test performed via Clinical Investigation Unit on 1st November 2024 shows subnormal response. The baseline cortisol was recorded at 273 nmol/L with increment to 321 at 30 minutes and 377 at 60 minutes. This is below the expected threshold of over 430 mol/L.”

Some reading I did subsequently suggested that it could improve, but would take time.

[marionofnorwich in reply to Angel_doll]

Ah, that is interesting, similar results to mine. Did they give you any expectation or guidance about what to do?

[PMRpro Ambassador in reply to marionofnorwich]

I thought we had explained that, MoN - you are on a replacement level dose at which you can function and are pretty safe. They can't DO anything to improve any potential recovery - only a low dose of steroid in the body at midnight and time can lead to adrenal function improving. Your GP can monitor your basal cortisol levels for you - you know where it is at present, if it improves over time it may be worth doing another SST to see if other aspects of cortisol production have improved but they cost more, they require more time as they must be done in a clinic setting for safety reasons.

[marionofnorwich in reply to PMRpro]

So are you saying that 4mg is roughly equivalent to a natural cortisol level? If so, I wasn't aware of that. I had not picked up that is wasn't just as low as I had got so I should stick at that. I realise that they can't actively do anything, it is more what I do and don't do that I am thinking about and how far it is worth pushing my levels down. Anyway, I will just keep feeling my way and moving slowly (both physically and metaphorically). Just don't want to make the situation inadvertantly worse

[Angel_doll in reply to marionofnorwich]

Just a lifelong 4mg dose, and follow sick day rules.

[marionofnorwich]

But would be intersted to know what they say to you so please keep in touch

[Hirondelle in reply to marionofnorwich]

If you have been diagnosed with Adrenal Insuffiency, you need to carry the life saving injection kit. Do you have this?

[marionofnorwich in reply to Hirondelle]

No, no support whatsoever but I am about to push (oysh) for an appointment with an endo. I broke my hip last summer and immediately took an extra 5mg pred while laying on the floor so the ambulance crew didn't administer hydrocortisone but no-one mentioned it then or whilst in the hospital. I wasn't on the ball enough to ask either. Strange really!

[Hirondelle in reply to marionofnorwich]

A lot of oyshing needed then. If you need to know anything, do get in touch

[marionofnorwich in reply to Hirondelle]

Thank you. Funnily enough, the surgery has just called to make a phone appointment with my preferred GP so that is good!

[Hirondelle in reply to marionofnorwich]

Wow! I haven’t seen a GP for over a year, always palmed off with PA or nurse or HCA. Enjoy! The GP has made it quite plain that she doesn’t want to learn about Adrenal problems.

[Sharitone]

Watch out for the synacthen going in! A bit of a shock for a little while if you're not warned!

[SudsSuds in reply to Sharitone]

Yes indeed I have had one already. I think I recall feeling a bit weird.