Adrenals

[marionofnorwich]

Again, I would like your opinion dear friends. I have read everything about adrenal insufficiency I think but I am not sure about the situation I am in. Currently hovering between 4 and 3.5mg (for a few days even down to 3mg) in an attempt to taper down and kick start my adrenals, which I am very keen to do as I find myself feeling very 'flattened'.

However, my rheumatologist has said that my short synathacen test results last year show that I have adrenal insufficiency and will need a dose between 3 and 5mg indefinitely, which I find raher defeatist. My results were not rock-bottom (i think about 348 after an hour, 280 after half an hour)

I am thinking that if I stay on 4mg or even 3.5mg then my adrenals glands wont be encouraged. But does a short-synacthen test indicate the permanent state? I thought that at 4mg it was still not a reliable indicator of the viability of the adrenals in the long term. Should I ask to see an endocrinologist? Or just accept that I will feel permanently flat (not depressed, just unmotivated and I can't imagine myself in many ordinary situations that people normally love, like a holiday or trip) - weird feeling when the most satisfying thing is watching TV from the sofa, with no oopmh.

[piglette]

What dose of pred were you on when you had the test? Also what symptoms did you have that made you think you had adrenal problems?

[marionofnorwich in reply to piglette]

I was on 4mg. I have never really had deathly fatigue but more tired than usual but that wasn't really the issue. Since I had Covid and then a really severe pain in my knee which turned out to be a sub chondral fracture (weird thing) I have had a lot of pain in my lower legs. My blood test shows no inflammation. So I think the consultant recommended the test. I was on 4mg for quite a while trying to stabilize and not sure what was v causing what

[piglette in reply to marionofnorwich]

I am surprised that they think you need to take steroids for life with what you say. One wonders how many people are on steroids when they don’t need them. I must admit, I think I would just try and slowly reduce, but don’t necessarily listen to me as I am not medically qualified!

[marionofnorwich in reply to piglette]

Yes, well I did say that to the rheumatologist the first time he said it (ie that I thought that I could gradually wean off) and he nodded but a recent email (I have been having muscular pains and not sure if PMR or something else) reinforced his view that I just need to stay on 3-5mg. I will keep trying reduction...

[marionofnorwich in reply to piglette]

Yes, I don't think I am going to submit to that idea

[DorsetLady PMRGCAuk volunteer]

Actually staying at a single dose for a few weeks/months might actually help the adrenals..and there is no reason that I can read in your post that they won’t recover.. They just need time (lots of it) and a very slow taper

[marionofnorwich in reply to DorsetLady]

Yes I have been on 4mg for a while, maybe more than a year now. Sometimes I foray a bit lower but it depends on what else is happening. In the middle of the year a broken hip meant going back up for a couple of weeks and working down again. Just before Christmas I went down in stages to 2.5mg but then walked around the shops a bit (maybe half an hour) and ended up in real pain, sort of tendonitis. I can feel the muscles in my legs and feet are very tight

[DorsetLady PMRGCAuk volunteer in reply to marionofnorwich]

Okay.. just keep trying to reduce when you feel up to it..there obviously is some life in your adrenals .. so don’t get too disheartened….mine decided at around 3mg they were going to come out and play… 😊

[SnazzyD]

I felt pretty flat at least until 1.5mg when I had my second Synacthen test. At 4mg it wasn’t good but the Endo said that it was still likely to be the effect of 4mg so to keep reducing but at 1mg per month which I declined. I was doing 0.5mg over 8-14 weeks at this level which was quite enough for me. It can take a long time at each level to adjust. As DL says give them a chance and stick for a while on a dose to let the axis catch up. Saying that I didn’t feel 100% at any point, just not always at death’s door. You might need to get off the 4mg if it is a sticking point for you (7-5mg for me) but it really is a guessing game. Winter really doesn’t help. Is your vitamin D ok?

[marionofnorwich in reply to SnazzyD]

Vitamin D turned out to be very low when I broke my hip vin June so they gave me a heavy dose for a month. At the next blood test it was over the recommended limit so I suspended supplements. Now I take D3 4000 Miu a day with Vitamin K2 built in but haven't had a recent test. I think I will carry on with 2 days on 3.5 and 1 on 4mg and see how that goes for a week or two and then try and get to 3.5 reliably. But at least you are saying that a short synthacen test isn't a one off thing

[SnazzyD in reply to marionofnorwich]

They can’t necessarily tell from one test what the future holds at 4mg in this kind of situation. Rheumatologists are not Endocrinologists and you are not the first here to have been told it’s steroids for life a tad early.

I could tell my test at 1.5mg was going to be better as I felt improved. You may find that it’ll take a few months on 3.5mg to feel any better. I didn’t find that doing a swing in dose helped kick start anything, like slapping a horse’s rear to make it gallop. I found it was time and lots of it; treating the horse kindly that helped. It can feel like endless living in a shadow for sure.

[marionofnorwich]

Yes that is how I feel ie that it is too soon to write them off but it seems that it gives a reason for not doing anything further. But maybe that is the situation, nothing too be done but keep managing myself. After all our is micro management so quite hard for someone else to do. And so variable it is hard to record and tell peopleMy reason for doing 3.5x2 and then 4 is that I am not disciplined enough to manage the true DSNT or whatever it is called and also cutting tablets in half and not losing the second half, so it seems like a way of grading down to 3.5mg propped up by an extra .5 every three days, which I can graduate stretch out

[PMRpro Ambassador]

For a start - the adrenals don't "kick in" like using a toggle light switch, they struggle back to the surface as the pred dose is slowly reduced, more like a dimmer switch that sticks a bit. Some people have no trouble at all, others do but get there in the end and yet others never do.

If a synacthen test is done IRO 5mg, it will almost certainly suggest adrenal insufficiency, most endos prefer waiting until 3mg and even that can still be causing a fair amount of suppression. Even when you get down to zero it can take up to a year for everything to return to normal. The synacthen test shows the status at a point in time on the dose at the time - it does not mean this is permanent.

A study in Leeds showed a lot more patients with PMR struggle with adrenal function than most doctors think and also that it takes a lot longer than they had thought for adrenal function to return and stabilise. In other cases, they would switch you from pred to hydrocortisone - it doesn't ENCOURAGE the return of adrenal function but it does make it more likely. The trouble is - it is no use for managing PMR because its antiinflammatory effect is so much less. And at this stage it it is a balancing act until the PMR burns out and goes into remission. But you can't assess that while the patient is on enough pred to manage the inflammation and as we know - even 1/2mg pred a day will achieve that for some people!

Snazzy has as usual given a really good real life example of the problem. I suppose it all comes down to how much your doctor and you want you to stop taking pred. Or how low works to give an acceptable QOL.

[marionofnorwich]

Yes, no-one is pressurising me to get off steroids and of course I value quality of life but I don't feel I am getting it at the moment, plus longevity is important to me as I have a dependent learning disabled daughter who really needs my support. She doesn't have capable siblings and although my husband is a caring stepfather, he prob won't last longer than me so I really think I have to prioritise longevity! Sounds a bit depressing I know otherwise I think I could be a bit more chilled out about steroids but unless I increase my dose again, I don't feel i am getting enough cortisol to give me the oomph to really get the most out of the next 20 years (yes, I plan to live till 90) so either I need to get those adrenals working or increase the pred. So a long-term plan it is! Thank you everyone. The main thing is that the test is not the last word on adrenal insufficiency but a snapshot in time

[SnazzyD in reply to marionofnorwich]

Just looking at my notes it took me 50 weeks to get to 1.5mg from a settled (ish) 4mg. I know I’m not you but it might give you some idea. My adrenals did get it but not by forcing them too hard. During this time I had domestic trials and felt knackered most of the time, needing a good nap in the day. The better times gradually increased rather than one day waking up and I was normal.

[marionofnorwich in reply to SnazzyD]

Great thank you SnazzyD I will start on a year long attrition and see what happens! Fingers crossed. I am not that knackered and don't have to sleep in the day. My body gets tired but I don't need to sleep. So gentle strengthening and gradually reducing is my tactic

[Angelsmummy]

Wishing you all the best in what you try to do M,such a headache trying to do the right thing isnt it?But all the success stories given to us,spur us on to make the right decisions.We,ll get there!xx💐💐😜