I just posted an adrenal insufficiency question on another community, but then was thinking perhaps I should have posted on my usual community as well given that virtually all of us would have taken Pred for long periods.
My GP did (at the request of one of my consultants) a 9am cortisol serum blood test. This produced results of 4 (mcg/dL) or 110 (nmol/L) - I had taken my Pred that morning at 7am as well - these results are low and indicate adrenal insufficiency. I have been referred to an endocrinologist consultant for further tests etc (currently awaiting the appointment) but in the meantime have been switched to 20mg of hydrocortisone (split 15mg in the morning and 5mg at teatime) from Pred. I have of course been strongly advised to make sure I don't forget to take the hydrocortisone, especially whilst I'm waiting for the consultant appoint.
Any comments/advise would be appreciated, but especially in regard to the low figure of the 9am test, even though I had still taken the Pred at 5mg that morning.
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To cut a story, I have been on Pred for 17 years. I have had 2 adrenal test in the past 6 months and on both occasions was told my adrenals were low, I have now been referred to an Endo. my appointment is on 26th May. In the meantime I haven't been given any advice and I have just been continuing with the Pred, [ 7.5 mgs. ] It was my Gastro Dr, who ordered the tests, as all the 17 years I have been taking Pred. not once did my Rheumy order an adrenal test.
I will be so glad to see the Endo. as I'm feeling really tired, I wake every 2 hours with a backache, fuzzy head and can't get going till I take my Pred, which takes a few hours to kick in. Unfortunately I wasn't told the results of the tests, and I didn't think to ask when I was last at the hospital, so i don't know how bad my adrenals are.
Thanks for the update - very interesting. I'm very silimar to you at the moment - exhausted all the time, pain, sleep issues, etc and feels like I can't get going until hydrocortisone kicks in. Goodness only knows when I will get Endo appointment as referral only done 2 weeks ago. Like you it was not my Rheumy who ordered the test - my Rheumy was actually very dismissive of needing the test (which is his default mode with everything to be honest)!!!
All the information I'm reading implies that my level is very low for an early morning test (hence my concern) but my GP does not seem overly concerned by the level at the moment (but there again GPs don't see much of this).
There were two questions there - one is the cortisol level doesn't tell anyone much, they should have tried a synacthen or ACTH stimulation test to see if your adrenal glands are CAPABLE of producing cortisol, doesn't mean they are but it tests their ability to do so.
And having taken a dose of pred at 7am will have skewed the result. If there is pred in the body - it won't see a need to produce more. Certainly for the synacthen test you are supposed to have not taken pred for 24 hours beforehand.
But you are presenting with plenty of signs of adrenal insufficiency!
Thanks for the update. The cortisol level test was just an initial (cover all bases) test requested. The referral to Endo is asking for a synacthen or ACTH stimulation test to see if your adrenal glands are capable of producing cortisol and then hopefully decide what to do next (based on the results of the tests). Although I'm currently ticking all the boxes of Adrenal insufficiency symptoms I'm assuming that 20mg of hydrocortisone will be more than enough to keep me clear of an A&E situation in the short term (until I see the Endo consultant).
I understand that both Pred and Hydrocortisone can skew the results but I do remember seeing a post a year or so back which mentions another medication which can be used in the lead up to the tests (to keep you safe), which does not skew the results.
Can't your GP request the synacthen test? They can in many places. Having the result of that would put you ahead with the endo when you do eventually see them.
I had the ACTH test done twice, it was done at 8am and I wasn't to take my Pred that morning. The first test I was told "it was low" [ I was taking 10mgs ] I was then told to decrease to 6 mg. before having the second test hoping that the adrenals would kick in, but not so. I was referred on the 10th Feb, for an Endo, and my appointment isn't till 26th May. I can only assume that I'm not a priority after waiting so long.
i have anca vasculitis i am told i am in remission. however my cortisol levels were 6 in the morning and pm they were 11 i take 5mg of pred every day i have no energy,no enthusiasim for anything or anyone and i feel as if i am in a bubble i am waiting to hear from the hospital about having a test to re check. fed up!!!!!
Hi I'm currently under the Endocrine Team for adrenal insufficiency. I have GPA and have been on prednisolone for 12 years and have been on maintence dose of 5mg for some time.
My consultant at Birminghams QE hospital tried to swap my prednisolone for hydrocortisone but after a couple of weeks I became quite ill, worsening fatigue and terrible muscle pains so I was put back on Prednisolone. A year on and I had a blood test without taking pred for 24 hours which was found to be low therefore I had the strachen test, again without taking pred for 24 hours. I'm currently waiting results.
The endocrine nurse told me I should increase my Pred by 2.5mg if I become unwell or need antibiotics. She was surprised that I hadn't been told this before. She said it was particularly important if I have 2days of vomiting to go A&E for and injection of hydrocortisone to avoid adrenal crisis.
I had been wondering if others with vasculitis and on long term steriods have had the strachen test and been informed of the above.
Hi Ludo, I was really interested to read your post. I too have been on a maintenance dose of Pred for years, but until Jan this year was supplemented with immune suppressers (methotrexate then more recently Leflunomide). It was when I stopped the immune suppressers in Jan when things really deteriorated with my health and hence the initial cortisol test (one of many new tests) and now waiting for the follow up test. It will be interesting to see how your tests go and any follow up actions from the Endo team.
I was interested in your comment about not being able to take hydrocortisone. I have only been on the Hydrocortisone 1 1/2 weeks so far but have encountered increased symptoms (far worse abdominal pain and severe nausea which comes and goes). I'm trying to decide if it's coincidence, the change to hydrocortisone or even the filler they use in the hydrocortisone tablets to bulk them out.
I have read about the need for an increased dose when unwell (from the uk support group for this condition) and the need for an injection if vomiting occurs for a couple of days. My blood test results were definitely in the range of where I should be doing this according to the support group, but my GP did not seem that bothered and actually advised against it, which surprised me.
As you say I'm sure there are others with Vasculitis who have this issue, but have never had the blood test so won't know. As I said previously my Rheumy dismissed having the test as a waste of time.
Hi PCAD. When I was on hydrocortisone I was made aware of increasing the dose should I become unwell. What I didn't realise is that I should do the same with prednisolone.
I was given a leafelet regarding this from the endocrine nurse entitled sick day rules for patients on long term steriod hormone replacement therapy (Hydrocorisone, Prednisolone, dexamethasone). You can download it on uhb/patient-information leaflets.htm
It might be useful in convincing your GP! I've yet to speak to mine but will do when I hear back about my strachen test.
It was early last year that I had the unsuccessful trial with hydrocortisone and went back on prednisolone. Like you I stopped my immunosuppressant (Mychophenolate) in January this year due to serveral severe infections requiring hospital treatment. OIt's a wait and see situation. Hopefully I won't relapse. I've been on it 11 years. I can't say I'm great extreme fatigue and generally feeling unwell, headaches etc. but i haven't got the major problems with sinus and lungs I had before diagnosis so I'm not too concerned.
It will be really interesting to hear how you get on. I will update you when I here back from the endocrine team. Wishing you all the best. Ludo
I have very recently been put on hydracortisol after taking the short synathan test. I had been on prednisolone for about 4 years and off it for the past six months. My blood results indicated that my adrenals were not producing enough natural steroid & I was feeling tired a lot and struggling to recover from infections.
However I was told I couldn't have test until I had been off prednisolone for at least 3 weeks & my steroid inhaler for 24 hours otherwise the endocrinology team couldn't get an accurate reading. I now take 5mg hydrocortisone in the morning & 5mg at lunchtime - no prednisolone at all. I was told that this was a v low dose & ive now to tackle reducing my inhaler dose which is high - 2 puffs twice a day of symbicot 400/12 which they said could have caused my body's natural steroid system to kick in even though I'd come off prednisolone. I'm doing this v gradually - reduced by one puff in morning for 6 weeks.
I'm feeling pretty well but a bit fed up about having to go back on steroids - even though it's hydracortisol - after struggling to come off them. I was told I would have no side effects but I do - they affect my sleep and make me hungry so I've put on half a stone within 3 weeks. I'll have to see how it goes. The plan is to stimulate my adrenals to work by gradually weaning me off everything.
I realise I'm lucky to be in reasonable health at the moment but do get fed up of continually balancing tablets & their side effects- as I'm sure we all do! It seems to be one step forward then back again as even hydracortisol makes you more susceptible to infections.
There does seem to be so much contradictory advice about when to stop Pred or Hydrocortisone before the short synathan tests. I have seen 24 hours mentioned and I have seen 3 weeks as well. I think I have seen that you can take an alternative in the lead up to the tests which does not interfere with the test results.
My cortisol serum blood test was done without stopping Pred at all and was very low, but I don't know how the Pred might have impacted the results (up or down). I'm now on hydrocortisone whilst I await the short synathan test.
Hello PCAD, I have been on prednisone for the past 4 years for my Vasculitis. I also took three cyclophosphamide treatments and 2 of the Rituximab infusions in the summer of 2016. It didn't put my Vasculitis in remission like it was supposed to. But I also have Rhumatoid, and Osteoarthritis. I am currently on 10 mg of prednisone. I take 5 mg in morning and 5 mg. in the evening. I read where prednisone lowers our adrenal production in our body.
I was doctoring with a Chiropractor who put me on a supplement called Drenamin 3700 made by Standard Process. He told me to take 3 pills in the morning and 3 pills in the evening. This helps with our adrenal glands and to make them work like they should. So I have been doing this for months now and I haven't had any problems. All my blood tests come back good except my creatinine is high. I don't know what my Rhumatoligist will give me to lower it. I haven't had any rashes since I was first put on prednisone though. I do still suffer from fatigue and like BOWLER said below in his comment I wake up every 2 to 3 hours with my back aching and my head is fuzzy feeling, like you can't think clearly. I don't know what this is from. The Vasculitis or the prednisone. I wish you the best with your doctors. I advise you and anyone with Vasculitis to get a second opinion, I did and I'm glad I did. Search for a good doctor who is concerned about you and your situation. I did and so far it has helped me to cope with my disease's. I don't ever wake up feeling good but I am thankful for my doctors and the good Lord above for everything. God Bless You PCAD.
Just thought I would post an update as I saw my endocrinologist for the first time yesterday. From reading up on the adrenal insufficiency web site I was well briefed up and aware that the consultation might not go as I would expect.
Anyway, for those who might be interested here is a brief summary:
- His opening statement was that he did not need to know about my symptoms (he would leave that to other). His objective was just to see if my Adrenal glands are producing cortisol. He had taken it for granted that it they were not it was due to my use of Pred over the last 4 years as anything else would be too big a coincidence.
- he completely dismissed the 9am blood cortisol serum test result of 110 as meaningless (irrelevant was I think his words) as I was still taking Pred at that point. However, my reading from experts in this field say that while the result might be slightly impacted it will be marginal.
- he was happy I had been switched to Hydrocortisone from Pred (It's what he would have done). He also gave some very useful advice about splits of dose and when to take them to try and smooth over the low points during the day.
- he repeatedly stated that if the tests show I do have adrenal insufficiency from the steroid use, then we just need to wait for the adrenal glands to start producing cortisol again, so I would just need to stay on the Hydrocortisone until a future test showed my adrenal glands were working again.
- he ordered an urgent short synathan test and explained I would need to go 24 hours without Hydrocortisone before the test and then take immediately after the test. This was the main thing I wanted from the consultation as the test will be conclusive and also show if it is steroid induced adrenal insufficiency.
- he stated he did not need to see me after the test for results etc, as he could deal with this by letter. As such he would see me in 4/6 months.
So, not ideal, but I'm thinking, have the test, get the results and then take it from there.
Thank you for confirming my take on it - I write about it on my home forums a LOT!
Your second point - my understanding of the physiology/biochem agrees with his: a random 9am cortisol level is meaningless if the patient is still on pred. The synacthen test also has to be interpreted differently for someone who is on pred than for someone who isn't. But then, if you have 4 doctors in a room you will have at least 5 opinions...
However - onwards and upwards! Looking forward to the next instalment!
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