Suboptimal Cortisol levels following Synacthen test

[Heucera1]

I’ve just turned 60 and used to be a sportsperson. I’ve been on predisolene for 5 1/2 years and unable to get below 5mg despite several slow attempts. My rheumy suggested a short synacthen test via Endo which was 8 months later. I barely function on 5mg with doing bare minimum, giving up my small flower business (exhausted) and thankfully can do do stimulating occasional voluntary work, I barely go out as energy to talk. My results came back as 53 mno/L and 162 mno/L and sub optimal. I’ve been told until I see Endo to keep taking 5mg and double if ill. My question is, since then I’ve upped dose and feel more energy but know I can’t get my body used to higher dose but I cannot carry on just existing on 5mg…does anyone else take more than 5mg for better quality of life. I already have Oesteopenia from steroids and being treated…and have ADHD and bipolar so manage that as well but been so hard these last few months. With test results sort of explains much. I’ll find out from Endo in 5 weeks but just seeing if anyone else needed more that 5mg daily after several years. I can still get PMR pain if I over do too but I think adrenals more the problem. . Thank you.

[piglette]

If you are feeling exhausted at 5mg it is probably the deathly fatigue caused by your adrenals having to wake up. I became catatonic at 5mg and had trouble lifting my arm to scratch my nose!

[PMRpro Ambassador]

You are the really awful point - of course your synacthen test was suboptimal since 5mg is enough pred to suppress adrenal function but also too much to trigger them to notice they need to make more for you to function better and improve the synacthen result. SnazzyD can tell you all about it! It is a catch 22 situation and very difficult to solve.

The only way out of it if you want to be off pred is to stick out the deathly fatigue stage - but even if it improves on 5mg, you are likely to go through it at the next reduction. The endo may suggest switching to hydrocortisone to try and wake the adrenals but of your PMR is still active, the HC almost certainly won't manage it. Catch 22 again.

I was put on Actemra to get my pred dose down from nearly 20 - it has done that, down to 7mg with no PMR problems at all. I have been down to 5mg and had to give that up, couldn't function and I live alone, no-one to do it for me. I went back to 7mg and it wasn't too bad so I've been trying 6mg again. I'm now realising that every time I go to 6mg I develop bicep pain - hum! Is that a bit of PMR still lurking despite the Actemra (it can happen) - last night I took 10mg and today I feel a lot better. I will go back to 7mg until I can discuss it with my rheumy.

[Heucera1 in reply to PMRpro]

thanks. I think I may be like you and need 6-7mg as I’ve tried for 3 1/2 years to get below with rheumy help and cannot and am much better when on 10 mg if I go out for the day! I cannot face tapering lower any longer and less than 5mg and just can’t anymore. Affects everything in my life and my mh. I’ll see what Endo says next. Thanks again.

[SnazzyD]

Hello, may I ask how you went from 7 to5mg? Timescale is quite important to put things into perspective.

I so remember feeling like you did in the low adrenal year+. At 4mg my Synacthen wasn’t great either. My Endo just said to keep reducing but at 1mg per month. I said no to that and instead did 0.5mg over anything from 8-14 weeks. It wasn’t easy but it came good in the end but was unreliable for another 18 months or so. My message here is that it can take a looong time and it may be you need to reduce at glacial speed.

[Heucera1 in reply to SnazzyD]

I’d like to know too as I’ll say no to tapering less than 5mg as tried so hard for 3 1/2 years with rheumy that I’d rather some quality of life now.

[Heucera1]

when do the results secondary adrenal insufficiency if I’m unable to go below 5mg after SST?

[PMRpro Ambassador in reply to Heucera1]

Sorry - don't get what you are asking?

[Heucera1]

thanks. Don’t worry, nor do I! Question was around the 5mg and if adrenal insufficiency ……that I’m not going to try to taper below again as impossible and stops my life (as other people) so will be patient and ask Endo in a month but think I’m suited to 6mg plus. And I’ll never get a good SST result if I’m not under 5mg…and adrenals either asleep or won’t work! Thanks for asking though. I can’t believe I’ve persevered for ages at 5 mg when I could have taken slightly extra and not given up my business through fatigue and any work. With all my other bipolar meds I’m now for better quality of life so it will sadly be on meds …or the poisons as I call them! I hope you’re doing okay.

[PMRpro Ambassador in reply to Heucera1]

A little bit of poison can often cure an ill! I hope you can get your doctors onside about QOL, Here I am lucky that mine are very good about that side of things.

[Zebedee44]

Hi, I have stuck at 6mg after seven years for a better QOL, having struggled with symptoms of adrenal insufficiency at 5mg. Luckily my GP says it is ok.

In anticipation of the difficult stretch of tapering lower I have given up my outdoor life with my pony and quite honestly have never felt so unwell. I know it was the right thing to do for both him and for me and I couldn’t face wrestling with PMR as we both aged .

I am booked for blood tests tomorrow including ACTH to see what’s going on with my pituitary gland, then a consult with Endocrinologist, so I hope he understands PMR and can advise on the way forward. Luckily I don’t have any other serious medical conditions and bone density is good so I’m happy to stay at 6mg and not have to go through the horrid experience of tapering lower. Maybe I am just being a coward but I live alone and have responsibilities so I can’t just succumb to exhaustion. Best wishes Chrissie

[Sho-Sho]

I am stuck on 5mg, have been on steroids now for 7.5 years, starting at 70mg for GCA. My synacthen result is very similar to yours but I also just tick over at 5mg, have tried to reduce using the DSM but feel so awful & exhausted that I have almost decided not to keep trying. I am 78 & want to enjoy life as much as pos & try & take exercise (be it limited). A bit of me thinks I am being pathetic but the other bit of me thinks get on with life & enjoy it as the last 7 years have not been a lot of fun. The Endocrinologist who I am under supports this - I am very aware of the side effects of long term steroid use, so religious about taking AdCal & have had Zoledronic infusions for osteoporosis ( the DEXA scan showed that 3 years ago) & am very conscious of my diet re diabetes.

Good luck.

[Heucera1 in reply to Sho-Sho]

Thank you Sho-Sho for what works for you. My Endo new to me so hopefully will support better quality of life. I would rather quality now than long term doing not much and now there will be steroids effects if higher but damage already started! You too have to monitor re diabetes. I’m already poisoning with lithium etc for MH and same infusions at you….only discovered as I broke my ankle 3 years ago. Good luck with your steroid journey. It’s so tough and I’m at point I’ve given up with 5mg as has completely ‘wasted’ the last year persevering as I’ve given up all work/socialising as exhausted. Fine when I take extra random steroids when need I’ve not discovered and will do. Hope you get to enjoy some more of what you like 🌷

[Heucera1]

Thank you Chrissie for what works for you and all the best your forthcoming test. I’ve started this week 6mg as clearly 5mg just isn’t enough for me and like you it’s been a few years. Consultants go on about 5mg but clearly not quite enough for all and like you curved my outdoor activities and creativity as pure exhaustion and absolutely tried tapering to plan several times and I cannot go through that again as complete waste of life/time being sofa bound. My daughter’s cat arrived Saturday as she is off travelling so a good relaxing distraction! Thanks again.

[Avadip12]

hello , well that could be my story . See my posts I have written much the same as you. Really I feel that we are in a catch 22 situation. The answer to feeling total rubbish is to take more steroid to be able to lead a functional life. But then for your future health and bones you have to reduce. My endocrinologist suggested that I convert to hydrocortisone twice daily to lower the impact. Not sure how that works. Or I just do a slow slow deduction again my 9 th time . I am on now on another slow slow again, and feeling rubbish like you and due to have another morning cortisol test again.

[PMRpro Ambassador in reply to Avadip12]

It is unlikely that hydrocortisone will manage PMR symptoms adequately if it is still active.