Synacthen Test UK

[Nuff1]

Is this standad at 5mg pred or does patient have to ask GP to make request (no rheumatologist involved with OH)?

[DorsetLady PMRGCAuk volunteer]

Needs to be requested.

But you need to consider a couple of things -

some fatigue can be expected whilst the adrenals are wakening, it’s not like flicking a switch and hey presto everything’s working- more like coaxing a old beloved tractor into life after a winter lay up (hope OH appreciates that analogy !).

The test only shows if adrenals are capable or working, not that they actually are.

If OH is showing other signs of adrenal insufficiency such as nausea, lightheadedness, low blood pressure then request a test, but usually it’s just a matter of time, and reducing SLOWLY.

[Soraya_PMR in reply to DorsetLady]

I appreciate that analogy 👍🏼 🚜

[DorsetLady PMRGCAuk volunteer in reply to Soraya_PMR]

Exactly how I felt!!

[Soraya_PMR in reply to DorsetLady]

Did WD40 help? 😉

[DorsetLady PMRGCAuk volunteer in reply to Soraya_PMR]

Norra lot!

Unless it stands for (white) Dom Perignon!

No thought not! 🥂

[prunus in reply to DorsetLady]

I had a good laugh reading your interpretation of WD40!

[SnazzyD]

My GP requested it for when she thought I’d be below 5mg. Then I was referred to the Endocrinologist for the follow up and comment and they like below 5mg if possible. However, even though I had an ok result my adrenals have definitely not been up to snuff. In the test they mimic the adrenals getting the signal from the brain. If the brain bit is still a bit sleepy you won’t know at that point. I find that I can be fine but if I have a sustained period of stress like an all day activity I run out of energy that feels different, to me, from my other fatigue bits. It is important that you are aware of symptoms of crisis when you really need a topup medically because they can feel very like you’ve got a bug.

I’ve been trying to get from 2.5mg to 2mg but my adrenals have said, “nope” for the time being so I need to go back to the beginning and ask more politely.

[Twopies in reply to SnazzyD]

What did they say exactly? DF? Pmr soreness and stiffness or something else? Just wondering how you knew to stay at 2 1/2, why you said your adrenals weren’t ready. I’m light years from 2 1/2, but always interested in how everyone figured out what they do. Thanks.

[SnazzyD in reply to Twopies]

The Endos didn’t say much, just about being vigilant about adrenal crisis and doubling up dose for illness. They then said from my notes that my GCA had gone so I could reduce fairly quickly. I don’t recall exactly the regime but it was like 1mg every 2-4 weeks. I was a little irritated and politely said not on your Nellie. The boss was brought in and I said I wasn’t about to risk a flare on the basis of someone’s opinion based on nothing scientific while I’m on 4mg. I was a little surprised at their suggestion given their concern about adrenal insufficiency. Nothing was said at my follow up at 3mg. I described my adrenal feeling and she said keep doing my thing and they’ll redo the test in 6 months.

The feeling that I assume is adrenal is different from the withdrawal and fatigue and I only got it under 8mg, particularly under 7mg. The feelings are particularly late afternoon - total emptiness like being hollow (previously I’d say I had a heavy tired), jelly thighs, a feeling of panic, a feeling of being unsafe, weepiness, pessimism, out of breath without being out of breath. I’m the background I feel bloated, sluggish and my intestines are on a go slow. I also started to crave salt and sugar. My skin went a bit yellow where my clothes are snug like waistbands. Also, for the first time in my life I couldn’t get up in the mornings.

[Twopies in reply to SnazzyD]

Thank you. Tough going, it sounds like. Sending you best wishes

[Hidden in reply to SnazzyD]

Thanks for that description I had that feeling when I hit 6mg. For a few months I had my afternoon dip. Because the adrenal things I had read kept mentioning salt I didn't worry just laid on the bed 3 to 6pm. But I did crave sugar. It was driving me mad and I felt low and anxious with episodes of having to stop and gather myself emotionally and physically.. It seems ok now unless I overdo it. It was the feeling of being empty and drained that effected me most.

I am glad you stuck to your guns, especially when ganged up on you. Just the stress of doing what they suggest would probably instigate a flare for me.

[Nuff1]

Thanks for the info folks - OH not at 5mg yet though, we were just wondering.

[PMRpro Ambassador]

Probably depends on the local policy - but it isn't standard no,

[KCRoyals]

I had the S/Test and came off Pred at 3.5mg. Ache quite a lot but Rheumy says this is mainly due to wear and tear. Not sure how long it takes for the adrenals to fully function, or if they ever will.

[Hidden in reply to KCRoyals]

Thats some drop. No wonder you feel crap. I would be saying i want back up to 3.5mg and spend a few months dropping.

[PMRpro Ambassador in reply to KCRoyals]

All the test does is show they CAN function - not that they are. That is a far more complex situation involving the delicate balance between a load of other factors. You should still have tapered down to zero slowly.

I do wish some doctors a) listened to their physiology lectures and b) thought ...

[KCRoyals in reply to PMRpro]

Thx, I now realise that. Maybe I fooled myself into thinking " this is it".

[PMRpro Ambassador in reply to KCRoyals]

Hope springs eternal!!

[KCRoyals]

Thx I'll write a more elaborate mail about my personal ride through PMR a little later.