So, I got my synachten test results. Apparently I have NO adrenal function!!! The consultant rang me with the result. I am not totally surprised but very disappointed. I asked if it could improve, he doesn't seem to think so as I have been on 5mg for a year and cannot get lower. I asked if the test could be done again later to see if there is any movement in the future if they could be nudged into working. He said I could, if I feel well in a few months maybe have it done again to see. But he is of the opinion that that's it. Steroids for life!!! I was changed to hydrocortisone for the week before the test and no steroids for 24 hours before. Has anyone had a "nothing there" test result that improved or am I fooling myself?
Synachten test results: So, I got my synachten test... - PMRGCAuk
Synachten test results
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How were you on Hydrocortisone? Never say never. Is your consultant an Endocrinologist? It is such a complicated field. I have my next test if and when I get down to 5 mgs , that is still a highish dose in artificial Cortisol terms. My Endocrinologist was quite upbeat but that was before GCA struck. Do your PMR symptoms return when you try to get below 5 mgs?
Yes he is an endochrinologist. A professor if that means anything!! I finished work because of the excrutiating fatigue when on 4.5mg. When i finished i literally crashed and really nothing improved so i put it up to 5mg. I just about tick over on that, barely. If i try to reduce, its like a plug is pulled out and pain in legs and everywhere. I still have pains on 5 but at least slightly better and i function a bit better. Hard to know about the actual pmr as i really havent gotten lower to test it out. I mean, im quite rotten most of the time to be honest. Problycontributes to the fatigue alright. Sorry pred head - i had very badabdominal pain with the hc.
Why are you tapering Pred when you're in pain? One of your earlier posts mentioned that you were painfree on 20mg....who has been advising you to reduce? Did an actual rheumatologist diagnose you? If so, where is he now? I'm sorry for all the questions and I may be missing something here, but you are definitely in need of better help than you're getting right now as you shouldn't be just 'ticking over'.
I have adrenal insufficiency and was on 10 mg of hydrocortisone for two years trying to kick start my adrenal glands then I had a PET scan and it showed I had inflamation in my aorta and other places so I was put back on high dose of prednisolone tapering down to 10mg I think the chronic fatigue is the worse thing
I wish everyone a gentle Christmas and good health
I did get a very low capability result with my first Synacthen Test. A few weeks later on a lower dose it was well within the normal range. I am due to be tested again when I get back down to 5 mgs after my GCA diagnosis. Goodness knows whether it can recover again. I really am struggling with ridiculous fatigue. I keep have to bail out of everything my husband and son plan for after dinner. Keep in touch!
Oh i panic if i hear anyone wanting me to go anywhere. I actually cant even imagine doing normak rgings. I lookat people and winder will i ever engage with the world again. Not exaggerating! Take care. X
I know exactly how you feel. I have heard that it hasn’t been a very nice world to engage in of late. We will re-enter when it gets its act together. Xx
It is so devastating Jane makes you wonder where it will end
A softly Christmas and New Year
PMRproAmbassador
At 5mg it is often considered to be too high a dose for a reliable result. However - particular endocrinologists have looked closely at what happens and are able to interpret the results pretty well.
There are a couple of people with "nothing" results - one felt fine at 2mg pred but had a nothing there synacthen result, had her pred dose adjusted and was given the emergency kit "just in case".
Do you feel better at higher doses? If so - why not take what you need to feel better? After 15 years of PMR and 11 years of pred I am on 15mg pred - less means I can't function well and I must as a sole carer. I have no identifiable adverse effects. Quality of Life is key - or I might as well give up.
I do agree, quality of life has been pretty awful. I have put it up a bit and i feel more human, its just up to 5.5 or i did 6 for couple if days then 5.5. So might leave it there for a bit. I suppose the thoughts of pred nevet gone doesnt feel good as ive never felt right on it. Though i mean i actually look different on the higher dose, less black eyes and that shattered look.
I know exactly what you mean. When I get up for the loo in the small hours, I scare myself when I look in the mirror. No more “ but you look so well”!
Oh i know!! Not good when you're trying to keep the mood up!!x
Oh thats good news. Do you feel well? And honestly i dont reallyknow who to be trustung, my gp told me to get off the pred, what damage would i have done of id followed her instructions!!!
Actually i think you were saying that recently about the pred. Well done. I just wish the medics could agree proper treatment for all this. Keep well.
Perhaps they know something that we don’t but giving up on your adrenal function at 5mg is a tad defeatist. The Endo I saw said 5mg was still too high to really assess the adrenal function because for some it is still sufficient artificial cortisol to keep the adrenal axis from working. 4mg was the maximum they would allow for a Synacthen test. My adrenal function took ages to really come back; a year for most of it and 18 months for daily reliable ‘performance’. I feel that the only way I got down was by going through a wall of poor function and the endo was also backing me on that saying that if you don’t challenge it, it won’t wake up. However, achieving the balance between crisis and challenge is walking a tightrope and I said goodbye to any quality of life for months while my body worked it out. Though I had plenty aches and pains as a result I had no primary autoimmune symptoms, but wondered at the time if people were sometimes experiencing poor adrenal function rather than a flare. It is a minefield trying to work it out and perhaps it isn’t conducive to getting on with life unhindered which is the promised land after so long on higher doses, so it feels wrong to feel bad at this point.
Honestly Snazzy I was a bit taken aback at his opinion. But I was in the middle of a bloomin shop when he rang, I couldn't think straight. I mean I was putting words into HIS mouth about trying down the line to see if anything would change. I know the misery of a lower dose, I had it for a long time as I said below to Constance I was moving up the scale from nothing when the rheumy took me off pred. I can't see me settling for this without trying to get lower but my worry is doing something dangerous! Its a constant battle this whole thing. For everyone!! I suppose it knocked the stuffing out of me as you say, I've been struggling for this promised land only for him basically to say don't bother!!!
My reduction wasn’t linear and I went backwards if I had to deal with something extra. I certainly didn’t go shopping for a while. The annoying bit was that I could be fine (ish) for a couple of weeks and then suddenly I just had to lie down and sleep.
That is so helpful and just the kind of guidance I also need. I am perfectly prepared to go through a period of low function if it leads to a return to a semblance of normality. I think I could go lower with Pred if I wasn’t fearful of the devasting effects of GCA. I am not clear about how much protection Actemra/Tocilizumab gives my eyesight.
Ah now that’s an entirely separate issue. I remember feeling very much that it was out in the open when I got below 10mg regards GCA. You just need a definite answer but there is none.
Hi Jane. I feel the same as I don’t know what protection leflumonide provides with my pred. I am on 10 mgs of pred daily as I had a flare when reducing from 9 to 8 mgs and had to increase to 15 mgs at that time. It is so scary to think of the consequences if the prednisolone is too low as we taper. I try to keep busy to prevent me from dwelling on this, but it does scare me. Hope your condition improves. Have a good Christmas and let’s hope 2021 is a better year for us all.
You too Skysey! We have to sit with uncertainty I guess.
My rheumatologist won't consider letting me drop from 7.5mg to 5mg even on a very slow taper. I was diagnosed in August, put on 15mg for 3 weeks, then 10mg for 4 weeks, now on 7.5mg. I have discussed the tapering situation with him several times but he wants me to stay on 7.5mg for at least 2 years. He says that if I'm too hasty I will have a set back and putting up my dose will not necessarily resolve the problem. I am now coming round to his way of thinking having had a few aches and pains the last few days, probably from doing too much, so I know PMR is still lurking. I have no real side effects on this dose.....
At least your rheumy is not rushing you off the pred. That's good, it's half the battle! Yes if you overdo things you'll know all about it. Its a very thin line!!
It parallels the Quick/Kirwan approach only at a lower level - they leave patients at 10mg for a year and find that reduces the rate of flares from 3 in 5 to 1 in 5. Given flares are mostly due to overenthusiastic tapering and it can be very difficult to get things back to rights after one I think it is a good approach.
I asked him how he would handle my tapering after the 2 years on 7.5mg. He said "Listen Blondie, I will tell you when the time comes". I replied "Thank you so much for calling me Blondie. Now I know that my hairdresser is doing a good job!!" Happy Christmas PMRpro xx
Think I could cope with your rheumy!!!
That makes sense. Good doctor. Blondie! I bet that gave you a boost.
Ha ha, certainly did! x
Don't think there's much chance of adrenals starting up again, but good luck.
I'm on steroids for life (4mg) but it doesn't worry me any more. 5mg is quite a "safe" amount with few side effects.
Constance you made me laugh! If I could even get to 4!!! Well I was on 4 at one stage. But I was working up the scale as opposed to everyone else moving down the scale cos my stupid rheumy took me off pred after a little over a year. Made a right mess out of me she did! Thank you, maybe that's how it will be.
Hi, along with others I’m surprised he tested you on 5mg, I understood that was too high. I was on 2/3mg pred & had to swop to hydrocortisone for a few weeks before the test. Then told by the endo I would need to be on no lower than 3.5 pred forever. My gp has agreed to another test sometime next year but I shall also bring it up with my rheumatologist in January. Currently on 4mg & plan to drop to 3.5 after Christmas. Have you been directed to the ADHSG website? Helpful information for people with adrenal insufficiency? Take care.
No, I'll have a look at that. Yeah I think I'll see how I go and maybe ask for another test later. Nothing about this is straightforward is it!!!!! Thank you.
I’m amazed at the number of people here who have had consultations with rheumatologist, endocrinologists and maybe others. Diagnosed with PMR a year or so ago, on top of an autoimmune blood disorder, I have had about three appts with the GP ( more recently that’s been a phone call ) who has merely suggested dropping my steroid dose slowly and advice to ‘see how you get on’. The haematologists are a bit more insistent as the steroids cloud their assessment of my Hb levels. However there has never been any referral for PMR to any specialist. I’ve learned more on this site than any medic has been able to explain, thank you all!
Couldnt agree more!!!!
I know exactly what you mean. My GP manages my PMR. Currently on 1 mg prednisolone, tried reducing but, no chance. Never seen any other professionals and used to adjust my own prednisolone with the consent of GP.
Ditto here, diagnosed 6 months ago with PMR. Not seen a doc yet, let alone anyone else. Three telephone consultations and regular blood tests. Very happy with support of present doc.
Had bad Eye pain and temporal pain but this new consultant told me I had a return of migraine because my blood results were normal but he ordered a Pet scan just to be sure He has been very attentive since !!!
Where are you located Dadcue? In the UK?
Oh god the fatigue!!!!!!
That’s helpful too. I have clearly lost confidence in confronting what has been my bogey man for nearly 5 years. I was on top of things with PMR, I understood it and Pred. GCA/LVV feels like another country.
I was wondering because where I live in London UK I don't think there are endocrinologists available to the local National Health Service.
I imagine London of all places has the odd endocrinologist!
Must be possible, I agree, but I think they are mainly down in a special unity by London Bridge and hard to access generally. A friend of mine originally diagnosed with MS had to go there traveling from East Sussex for very fine testing. Eventually they ruled out MS but has another auto immune illness.
I was diagnosed with PMR in late October, started on 15mg pred then up to20mg. Just had 2nd blood tests and told by GP I had only come down 1 point on scale( started at 10.5 now 9.5) don.t really understand this, what is “normal” Anyway she wanted me to up pred to 25mg but I persuaded her out of this as I feel I’m coping on 20mg and would rather leave it until next test when hopefully I can start coming down. Any advice? Also GP close questioned me about headaches and altered vision neither of which I suffer from.
Your blood test inflammation markers may not be going down enough on your present dose? She is obviously also concerned about the vision and headache issue. If nothing improves she may want you to increase to see if it will bring markers down.
I can only assume that that is your CRP reading, a measure of inflammation. (it is really helpful if you ask them for details, preferably a print out of your blood results) and it is stable rather than falling which it should do if you are on enough pred. I wonder if too if this is a doctor who has read and understood the 2015 Recommendations where they say the starting dose should be the lowest effective dose in the range 12.5-25mg - if so, well done her. You shouldn't be "coping" - you should be showing a distinct improvement all round and I promise you that a little bit more now may well make it easier and quicker to reduce the dose later. Everyone is different and some need a bit more than others at times.
Thanks for the information, I will make a note of my CRP readings and ask for a printout. It is so difficult when you can only get telephone consultations and the practice nurses who take the blood samples have no knowledge of my condition.What should a normal CRP reading be?
My GP will review my pred amount after the next blood test in January. When I say I’m coping my legs are fine but still feel I’ve been punched in the top of my arms. However, still dancing, playing tennis and walking a lot, no complaints. When I get tired I just put my feet up for an hour.
Thanks everyone for support and advice.
Depends on the scale they use in the local lab - and the printout will show that in brackets after the result. If 10 is high I suspect their normal range is up to 0.5 mg/dl, sometimes it is given as up to 10 mg/L.
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