I was going to be given this test last year but I went away abroad for a long stay, been back and forward but could not arranged it. Now I have no excuse apart from I'm really scared of the side effects of the Synacthen. Do I really need to get this test I wonder? I don't want to feel any worse than this for any reason. I seem to be very allergic to many things at the moment, so how dangerous to get this hormone injected for measuring cortisol profile? Any thoughts?
I had it done a few years ago before MCAS kicked off. I was absolutely fine. In fact the test was negative, no issues, but i had the most incredible sense of wellbeing from the test and was then VERY tired for a few days afterwards. Nobody else seems to have had this feeling good from the test. It wasn't a high energy good, but all my anxiety dissapeared and i felt very calm, the calmest i have ever felt in my life.
Hi Erin. My experience was that the test went well and I had no bad effects apart from the awful post exertional problems of attending a hospital. It was an early morning appointment and an almost total waste of my time as the NHS Endo wasn't interested apart from ruling out Addisons disease I don't automatically agree to tests and investigations now as the appointments cause increased symptoms and many NHS doctors treat me with contempt or simply don't know about ME
P.s. Just. I also had an unexpected good result to the test. Normally my morning symptoms are nausea/vomiting, weakness, fainting but within a few minutes of the injection this lifted. On a normal early morning hospital appointment with no food I would have felt awful. The Endo I saw refused to even discuss this and there was no question that I was there only under sufference.
I had it done..it was 'slow' so I had the full stress test done. Neither are worrying at all ... and I'm incredibly sensitive to most things. PS: after a full stress test you can eat a horse... actually now I come to think of it not so different from taking pregabalin!
@Lilpink thank you for your input. I hope you don't mind me asking what is full stress test? What was "slow"? Adrenalin release?
My daughter is having this test next week - I'll let you have feedback re how she found it afterwards.
I had one done in about 2008. It was done privately by an endocrinologist and I was on a hospital ward for several hours. I was fine while it was being done but several hours later, I felt pretty awful. Climbing the stairs at Vauxhall station to get home felt like climbing Everest. HR increased and remained very high. Needed to phone for advice ( which was to take propranolol) and saw GP the next day. He noticed a light red rash on chest as well as fast hr, took it seriously and wanted to see me again in 3 days. By then all was settling and I had no longer term effects. I was pretty anxious once the symptoms started so anxiety might have played a part in continuing the symptoms but I don't think it initiated them. I may have had some sort of reaction to the test and I am far more cautious now about what I'll have done. I'm sorry I can't just be positive. The endo by the way rather crossly said my symptoms had nothing to do with the test. But he also said there was no such thing as ME. Test results were normal. Edit: format issue
Hi Erin, I have had this test some times and the result is always in range, measured by serum cortisol. I feel great, and almost normal afterwards which makes me think that I need that extra boost of ACTH. After overdoing things I get the usual PEM. Saliva cortisol test should be the best lab test to monitor the effect of the synachten test instead of serum cortisol according to an endocrinologist I talked to. That should bypass the risk that the patient has a SNP for the cortisol bínding globulin CBG. I think that SNP has been shown to be more common among PWME than in a healthy population. Best of luck!
Interesting that a few of us felt btter than normal afterwards. Mine then led to a worse than normal, which could have been the exertion of attneding appointment and the worry, or could have been related to the test.
Thank you all, great response. I've come across some comments over the internet about feeling so tired few days after this test. At the moment I can't imagine feeling more tired than this and the outcome is to rule Addison's I guess. I'm not sure if I need it. Everyday is just about managing the day for me. If I have few good hours it's a bonus. So, I feel taking the test is an unnecessary hustle. I guess I've given up looking for a diagnosis or treatment. I'm not so hopeful. I feel I'm comfortable in my own bubble and I can't be bothered with any outsider, any activity outside this bubble.
It's so long ago now and I can't remember the details. I'm assuming adrenal sufficiency in all its forms is assessed. The short and long versions of the test are discussed here: https://www.sciencedirect.com/topics/neuroscience/acth-stimulation-test In terms of the use of the word 'slow' it's hard to know what they really meant by that..I suppose that the response to synacthen was laboured....
I have had the short synacthen test. It didn't have any adverse effects, nor did I get any boost from it.
I had the test done years ago and there were no adverse side effects. And the test results came back as normal.
For info on the Short Synacthen Test, see pages 68 - 70 in this document : http://imperialendo.co.uk/Bible2017.pdf On pages 71 - 72 there is info on the Long Synacthen Test.
My daughter had test done last Monday. The test itself is very straightforward. As her sleep cycle is out of phase this had a larger PEM effect than others may experience. She was in bed for 2 days afterwards . Happily back to " normal" level by Friday.
I have cancelled it. I'm not feeling great recently, going to the hospital early is not something I can do nowadays. The other thing that worries me is the recent flu epidemic. I had flu last year and I ended up having pneumonia, ruined my fragile health further. After the antibiotic use I now have so many allergies, I can't tolerate gluten and dairy (and other grains and greens etc). I don't want to risk having another flu. I also given up a bit, just can't be bothered. I don't feel I will achieve anything by having this test done. Fed up with eliminating possibilities of so many diseases and I really don't think I have Addison's.
