My ACTH Stimulation test is to have 3 blood draws

[Mrs-CJ]

After waiting for several months I was finally able to see a specialist (where I live a GP cannot order this test). I’m wondering if any of you have had this test that will have 3 blood draws?

At first she said they only do this test if you are off prednisone. I wasn’t shocked to hear this as someone posted (perhaps on the Patient Forum?) that the Mayo Clinic had told her the same thing. I told her that it would be awhile before I could go to zero....that if I did it now my PMR would flare up too much. So she called a colleague endocrinologist while sitting with me and they agreed if I could get to 2.0 mg for 3 days prior to the test it should be ok.

I haven’t been contacted yet about my test date but it should be in about 14 days.

The past 4 weeks I reduced from 4 mgs to 2 3/4 (I was good at 2 3/4). I am currently alternating 2 3/4 and 2 1/2 and on Sunday will begin increasing my 2 1/2 mg days. If the deathly fatigue doesn’t kick in like it did last time then I will quickly begin adding in some 2 1/4 mg days. My plan is to just drop to 2 mgs the 3 days before the test.

I’m hoping someone on this forum has done the 3 draw test and has some info about that, and I also welcome any comments about my quick reduction plan!

[PMRpro Ambassador]

What rubbish - an experienced endo can interpret the results from a test done while you are still on 5mg although they do prefer lower, even 4.5mg. There really are some prima donnas out there...

The first blood sample is to get a baseline cortisol level, then they give you an injection to stimulate the adrenal glands to produce cortisol. Another blood sample is taken about 1/2 hour later and another an hour or two later. A good department will insert a cannula - 1 stick and they do all samples with that. I assume they give the stimulation injection via that too so it works quickly.

Careful with the drop - if you feel unwell stop. If you DON'T have adrenal function and experience severe stress you could have problems.

Does that help?

[Mrs-CJ in reply to PMRpro]

Sorry for my slow response. Thank you very much for the info about this. I think I know what it feels like to have my adrenals get too low as I’m pretty sure that is what happened when I got so very ill back when I tried to reduce in Feb/Mar.

I seem to be ok reducing to 2 1/2.....this is my 5th attempt and so glad it seems to be going ok. Perhaps going up to a higher amount of prednisone for about 6 months and then trying again has really helped.....time will tell!

[SnazzyD]

Mine was done at 4.5mg. They would have done it at 5mg but said 4.5mg was better.

[Mrs-CJ in reply to SnazzyD]

Yes, almost everyone on the forum said they had their test at 5 mgs or lower. I was so surprised, and disappointed, when this doctor and her colleague said I had to be at a maximum of 2 mgs. As I replied to PMRPro, it’s looking like I can get down to 2 mg without getting really ill.

[SheffieldJane]

My Synacthen Test was called a short Synacthen Test. Blood was taken once to get a baseline figure, then the Adrenal stimulating hormone was added, after half an hour blood was taken to see how much my own Adrenal glands had produced. For this test I was free of Pred for 24 hours. I wonder if your test is more comprehensive and done over a longer period of time. As my results were suboptimal, I imagine that they may test me again later on. I am currently on 6 mgs of Pred.

[PMRpro Ambassador in reply to SheffieldJane]

There is a short and long version:

"The synacthen test is used to test adrenal reserve. Synacthen is tetracosactrin, the first 24 amino acids of ACTH.

Short synacthen test:

take a basal sample for cortisol

give 250 microgramme Synacthen i.v. or i.m.

sample for cortisol are taken at 30 mins and 60 mins

In healthy individuals, the basal plasma cortisol should exceed 170 nmol per litre and rise to at least 580 nmol per litre. The hypoadrenal patient is unable to raise their serum cortisol in response to synacthen.

A depot synacthen test may be performed if the short procedure is equivocal and Addison's disease is suspected:

basal plasma cortisol is measured

1 mg of synacthen is given intramuscularly

samples for cortisol are taken at 1, 4, 8, and 24 hours

Plasma cortisol fails to exceed 580 nmol per litre in Addisons disease but in secondary hypoadrenalism, a delayed but normal cortisol response may be observed."

[SheffieldJane in reply to PMRpro]

I managed to get up to 390 from a baseline of 230, in 30 mins.They were looking for a minimum of 435 but I have also read 530 +. Everywhere I look has different numbers and values that I am not familiar with. My gut feeling is that all will be well in its own time and a slow taper won’t kill me.

[PMRpro Ambassador in reply to SheffieldJane]

The lower figure is probably the one for patients still on corticosteroids when the synacthen test is done. The figures are different as the pred blunts the response but there should be one. I don't think there is a lot on the internet about that, just the results for "normal" patients.

Two or three doctors have said to me that the vast majority will regain adrenal function if they reduce slowly enough though they were surprised when I told them how many people I know on the forums alone who have proven adrenal problems. I suspect part of it may be that adrenal function was low anyway in a very few patients. At one time there was some thought poor adrenal function might have something to do with causing PMR but they later discounted that but did find the many patients with PMR had impaired function.

[SheffieldJane in reply to PMRpro]

Thank you PMRPro. I wouldn’t be in the least surprised and I have had Graves Disease and am now Thyroxine dependent, as well as the PMR/ Pred effects .

I hope that one day our daughters at least, can get bespoke hormone treatment. It lies at the heart of so much that ails women in particular.

[Mrs-CJ in reply to SheffieldJane]

The doctor didn’t offer details about the test other than they would do 3 blood draws and that I have to go to the hospital blood lab. I wasn’t having a very good day so I didn’t ask questions like I would have if I had been healthy. I sure wish I had had my wits about me better....but as we know we can’t control this crazy condition.

I can’t decide if it’s good or bad news.......but the blood lab is backlogged so it will be a longer wait to get my test.....no date yet. I would really like to have it and know the results but on the other hand this gives me longer to reduce my prednisone and therefore less probability of triggering a flare!

[SheffieldJane]

I just wanted an explanation for the strange unwell feelings that were holding up my taper. I suspected that it was no longer PMR pains.

[Mrs-CJ in reply to SheffieldJane]

Yes, that is exactly why I want this test. When I tried to reduce to 2 1/2 (tried several times) I wasn’t getting PMR aches......but I was getting a very unusual (for me) amount of fatigue.

As many forum people had the same issue and had the test to check out what was going on, I decided it would be helpful for me to do that too!