Synacthan test results

I mentioned six weeks ago that my test had been cancelled and some asked me to keep up to date. I had my test last Tuesday and results today say suboptimal endogenous cortisol production. The consultant instructs me to continue taking 5mgs of Pred or 20mgs of Hydrocortisone until he sees me in clinic in 4 months time. In the letter there are then 2 paragraphs about Type 1 diabetes which I don’t have. I had been given the understanding the consultant would ring me with results and discuss. I am very disappointed and frustrated having had 18 months of feeling exhausted and dreadful since reducing Pred below 8mgs. I would appreciate any wisdom from this group. Thank you.

[SnazzyD]

Mine was sub optimal at 4mg but my Endo said to keep reducing in order to stimulate the adrenal axis into working. At 5mg he said that is still enough to be suppressing the adrenal function in some people which is why he didn’t like to do a Synacthen test at that level ideally. I felt pretty rotten for the best part of a year reducing from 7mg to very low numbers but better days interspersed the bad more often. 7-5mg was a time I’d rsther not repeat. 5-3mg was better and under that the clouds started to part. By 1.5mg my Synacthen test was very much bette.d

[Hidden in reply to SnazzyD]

Thank you, Snazzy. So the result of the test is a part of a moving picture? I had to go on to 20mgs of Hydrocortisone to be able to have the test. Hydrocortisone can be out of your system for the synacthan test by stopping it at lunchtime of the day prior to the test so effectively the test is without steroid in your body. I just have to have some hope that I can live a life which is not crippled by extreme fatigue. 😧

[SnazzyD in reply to Hidden]

I believe so. On doses above 5mg it felt to me it was too high for the adrenal axis to get the message fully to work but the Pred dose was too low for me to function on a daily basis. By the time I got to 4mg I was over the absolute worst and the Endo agreed with my hunch. I also think that’s why I felt so awful. My hunch was to keep reducing slowly and hey presto it got low enough and the feedback system swung into gear. I’m not sure anyone can say your adrenal axis is kaputt on the basis of one result at 5mg. Even though I felt rough, the Endo wanted me to keep going down and it was me who said it needed to be slower than 1mg per month because I knew I wouldn’t cope with life’s demands. It could be your fatigue is because you’ve been through that no man’s land of dosing amd haven’t yet got to the point where the dose is low enough to kick it into gear. However, the big issue is that we are all very different and that is the problem docs have; they can’t be sure what you are going to do. As to whether your adrenal function is permanently too low, I’m not sure on the face of it that anyone can say yet. When people have the test they have to have not taken Pred for 24 hours. The other thing about the test is that tells you if the adrenal glands can work but it doesn’t tell you if they’ll work all the time and on demand.

[Viv54 in reply to SnazzyD]

Really interesting !

[Avadip12 in reply to SnazzyD]

Oh my the last 15 yrs of my PMR treatment, has been so up and down. Mainly troubled by crippling fatigue and very slow brain function My rheumatologist has never paid attention to this and my GP just sympathises . All they do is drive me to continue to keep lowering my pred. When I reached 3 mgs last year I almost stopped functioning, and increased my own dose to 5 mgs . Now reading these post I still wonder if my condition has not been managed fully. Because unless you get in to a adrenal insufficiency crisis the medical world is not interested . As mild insufficiency are not an bother to them !

[SnazzyD in reply to Avadip12]

I reduced really slowly by gently introducing 0.5mg drops over 2-3 months at a time. It was the fastest I could go and just about function. The lower I got the slower I got. 1mg to zero took a year. The big problem with all this is how bad should one feel before knowing when to take extra Pred, how long for and when to call for medical help? Help can be tricky especially when that help may be one extreme or the other; proclaiming your adrenal function a lost cause or dismissing it as a problem. A collaborative happy medium would be good.

[Longtimer in reply to Avadip12]

I have adrenal suppression (insufficiency) and they are still not interested....I really don`t think they have much idea....we are all so very different when it comes to how our adrenals have been affected over the years...you are longer than me....and how they will start working again....if they ever do.All I know is....I really do not want to feel like I do at the moment while trying to lower to 6.5mg....something has to change hopefully.....

How are you feeling at 5mg, and have you had cortisol tests?

[SnazzyD in reply to Hidden]

Doing it slowly enough helps with the awfulness

[Longtimer in reply to SnazzyD]

How slow please!!....I have tried slow for the last ten years....did you follow any particular lowering pattern on here?

[SnazzyD in reply to Longtimer]

No pattern as I did it largely on gut feel, whatever that was. From 10-5mg I did 0.5mg drops over different periods depending on how I was but it looks like I actually averaged 1mg per month. However, some 0.5mg’s were easier than others. I never felt better than vaguely fluey throughout, but wouldn’t like to tell someone else that’s how they should be; I just had strong hunch that this was a horrible neither here nor there area. From 5mg took 10 weeks to get to 4.5mg every day of the week plus 2 weeks at 4.5mg

4.5-4mg - 4 weeks plus 3 weeks sitting at 4mg.

4-3.5mg - 7 weeks

3.5-3 mg - 8 weeks

3-2.5mg - 9 weeks plus 2 sitting at 2.5mg

2.5-2mg - 12 weeks plus 2 weeks at 2mg

2-1.75mg - 6 weeks

1.75-1.5mg - 3 weeks

1.5-1.25mg - 4 weeks

1.25-1mg - 2 weeks

1mg to zero 1 year changing up and down by 0.25mg with a couple of one day increases of no more than 5mg to deal with a crisis due to unusual physical challenges.

[Longtimer in reply to SnazzyD]

Thank you for that. I think I must be one of those that doesn't absorb Pre d like some, I have been trying to lower from 7mg to 6.5mg since July, and still feel so ill!!.....after 4 days of the lower dose I get a bit worried how I feel....extreme weakness, heart racing, breathless, sweats, dizziness and balance problems.....did you experience this?...the reason I don't continue is because of the adrenal suppression, and I wonder if I'm making it worse.....

I am having another cortisol test in December.....fingers crossed the reading has improved...🙏

[SnazzyD in reply to Longtimer]

Do you mean at 4 days of the new dose continuously after using a plan like Dead Slow plan to get to that new dose? My body certainly knew once I had got to three days out of 7 of the new dose. Yes I did feel like that and it was the absolute worst from 7-5mg . I felt I would never be well again.

[Longtimer in reply to SnazzyD]

Yes but things have now changed...will write a new post now, have had a phone call!

[Boss302Fan in reply to SnazzyD]

I have an appointment with my Rheumy in mid-November. I’ve been doing 5 week tapers of 0.25mg after completing a full 5th week daily dose of 3mg. So far I’ve had no symptoms of anything. No flares since I think Dec 2020. Only once did I have a feeling of mild nausea while doing heavy work. I stopped immediately and 10 mins later was fine. Nothing since, feel completely normal. By the time I see the Rheumy I’ll be on week 1 taper toward 2mg (if I still have no symptoms while tapering toward 2.25) but I’m going to ask again if he thinks a Synacthen test is warranted and regardless I want an action plan if I suddenly experience symptoms of Adrenal Insufficiency.

[SheffieldJane]

My results were suboptimal at 5 mgs and completely normal when I had reduced to 3 mgs. The Endocrinologist still wants to keep an eye on me. I was subsequently diagnosed with GCA but when I get down to 5 mgs again I have to return to him. It really was my belief that gently reducing Pred was going to stimulate my own cortisol production. I understood that it may take a year of zero Pred to feel right again. I declined the recommendation of 20 mgs of Hydrocortisone. I was still symptomatic and Pred is the devil I know. I also thought that the deathly fatigue was adrenaline linked but I am not so sure now. I think these autoimmune diseases lead to fatigue and wonder if Pred itself has kept my body on high alert and I am simply exhausted. Sometimes I think I am improving in the tiredness stakes. Perhaps Tocilizumab has helped.

[Viv54 in reply to SheffieldJane]

Such a grey area , who really knows !

[Hidden in reply to SheffieldJane]

Thank you, SJ. Helpful to hear others experience. Endo is suggesting no more reduction in Pred for time being. Just need to talk to him to hear what is on his mind.

[cycli]

Oh SJ that sounds awful. So sorry that you feel that way. It is depressing reading this and knowing that however careful we are reducing we all have to get through this wall. This is why Dr's want us off it but it seems they don't know how. They must feel conflicted having to put us on Pred. in order to help us . Maybe they do understand after all. They have to watch as we all try to reduce but we are all different with varying thresholds and they have no way of knowing which so they try and get us off it quickly since we are going to hurt anyway. In a way I can understand this if that is their approach. It is wrong, but makes some sense. Seems to me that the only approach is to plough on reducing and get the best help possible at the very low doses.

[PMRpro Ambassador in reply to cycli]

"however careful we are reducing we all have to get through this wall"

No - many people are able to get through the last 5mg without such severe symptoms of adrenal insufficiency. About half of patients take notably longer than the others - but severe problems do remain the exception rather than the rule.

[cycli in reply to PMRpro]

That sounds more reassuring PMRpro. thank you.

[Hidden]

Thank you, Dad2Cue. I read the conversation on this forum. But nervous about sending personal e mail. Thank you anyway

[cycli]

Thank you D2C. I think that is a good idea. Please PM me. It is probably something not to post as it is personal and could maybe mislead. Would appreciate reading another perspective. I am not for playing with this drug, but I am really trying to understand how it behaves.

[Hidden]

Thank you for your reply. I have been taking Pred since Apr 19 so 2 1/2 years. I have had a tricky relationship with it. Very sensitive to it so lots of horrid side effects in first 10 months. Then chronic fatigue from 8mgs downwards. When I saw endo in June he said I have to be treated as tho I have Addison’s tho I don’t have it. He is advising no reduction of 5 mgs of Pred for next 4 months. I am encouraged by both you and Snazzy that light comes around 3 mgs. I just need to have a conversation with the Endo to see what is in his mind. Time races by and I have lost the ability to do so much.

Thank you.

[PMRpro Ambassador]

At 5mg it is very likely to be sub-optimal - and why many endos won't do a synacthen test until the patient manages to get to 3mg - which even then can be equivocal. IF 20mg hydrocortisone in divided doses manages your PMR symptoms then that would possibly be a good idea - it is enough to manage adrenal insufficiency so it might help you decide what is that and what is still PMR and it is more likely to encourage adrenal function. There is a lady on the forum who has managed her PMR using HC almost the entire time as she couldn't use pred.

[Hidden]

Hello, everyone. Such helpful replies giving insight and wisdom. Very much appreciate you all. I called the Endo team and have been given a telephone appointment on 19th Nov and a face to face appointment in Jan. So can have a conversation and hopefully hear what is on his mind in a month.

Meantime am pretty sure I am having a flare!!! Neck so painful just like when I was first diagnosed. So blood tests today and telephone call with rheumy nurse tomorrow!!! Oh gosh!!!!!