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Dragonfly Wings 11-12-2016 04:20 PM

Synacthen Stimulation Test
 
Hiya Everyone,

How are we? After 3+ years of running around between Doctors etc it has been found that I have low cortisol and a few other things my Endo has told me points towards Pituitary Disease, but he has booked me into the hospital on Nov 24th to have this Synacthen Stimulation Test done also. Apparently it will also tell them more than just my cortisol and adrenals? I am all new to this but hoping for some answers, any answers LOL.

So, have you had this test done? What was it like? What happened during it? After it? I would love to hear your experiences please :)

Many thanks!

Dragonfly Wings 11-18-2016 12:37 PM

Re: Synacthen Stimulation Test
 
Only me again hoping someone might have some experiences :)

My test is coming up in just 5 days and I have read some people react adversely to the injection some just for the day, others for a few days later..... has this happened to you? I need to work the afternoon of my test and I am wondering whether to just let work know I will be off that day or not :/

Any insight in to how you went would be really appreciated please.
Thanks so much!
Kirsty

Dragonfly Wings 11-24-2016 01:11 AM

Re: Synacthen Stimulation Test
 
[QUOTE=Dragonfly Wings;5439431]Hiya Everyone,

How are we? After 3+ years of running around between Doctors etc it has been found that I have low cortisol and a few other things my Endo has told me points towards Pituitary Disease, but he has booked me into the hospital on Nov 24th to have this Synacthen Stimulation Test done also. Apparently it will also tell them more than just my cortisol and adrenals? I am all new to this but hoping for some answers, any answers LOL.

So, have you had this test done? What was it like? What happened during it? After it? I would love to hear your experiences please :)

Many thanks![/QUOTE]


My test is all done now and I know I'm replying to myself but maybe someone will come across it looking for the same answers so I thought I'd share my experience :)

The synacthen injection is far from pleasant, it had my whole arm stinging on fire all up my neck - which is still sore. I felt like my head was running a million miles an hour but my body was about to give out. All in all it made me feel terrible - more terrible than usual. Anyone having this test would understand the "usual" feeling of terrible.

They advised me to have the day off from work due to how I reacted to it, heart was also racing, blood pressure shot up quite high, hot and cold flushes. Seems I was the minority who's body wasn't too impressed with the injection. Not too sure what that might mean but I will let you all know on Tuesday when I get the results.
Cheers,
K

AdrenalHelp 01-25-2017 06:26 PM

Re: Synacthen Stimulation Test
 
I just wanted to say thank you for posting your trials and tribulations. There is such a small amount of information out there for us to learn from other's experience. It is appreciated!

Dragonfly Wings 01-25-2017 08:38 PM

Re: Synacthen Stimulation Test
 
No worries at all. Sorry I forgot to come back in to say the next morning they called me to say my test was positive, I have Primary Addison's Disease :(

Diefen 01-31-2017 11:25 AM

Re: Synacthen Stimulation Test
 
It sounds like they were looking for something worse and didn't find it? If so, that's good news.

Nicevs 03-27-2017 01:15 PM

Re: Synacthen Stimulation Test
 
Thank you for this. It's nice to have info. I've just come across this site and am having the test on Friday. I'm scared! How did you feel pre diagnosis? I'd love to hear and compare?
N

Dragonfly Wings 03-28-2017 01:02 PM

Re: Synacthen Stimulation Test
 
My pleasure Nicevs, I am happy to be able to share my experiences in hopes of helping others. It's unfortunately a rare illness that seriously needs a lot more exposure, education and understanding.

I honestly don't feel much different post diagnosis than I did pre-diagnosis unfortunately. Still very fatigued and all the rest of it. We are still getting my medication correct and in the mean time I am just hovering on the edge of trying to live a normal life :(

What symptoms are you having? All the best!
K.

Nicevs 03-28-2017 03:09 PM

Re: Synacthen Stimulation Test
 
You've had a rough time. I'm hoping to get answers soon but sounds as if things are not going to be straight forward 😫

Dragonfly Wings 04-01-2017 11:27 AM

Re: Synacthen Stimulation Test
 
Unfortunately it's a long unknown road really, it's like feeling around in the dark for something that's in another room. That has been my experience so far and it appears to be that of quite a few others I have met since my diagnosis too. It's a life term of uncertainty.

Though, some people do have it a lot easier and get along with their life relatively unscathed. I guess it's like every illness and person is different :)

Diefen 04-03-2017 02:47 PM

Re: Synacthen Stimulation Test
 
I finally looked this up and realized it either was what I had years ago or works the same way as what I had. It sounds like you had the long test(24 hr) and I had the short test (30 min?)

The test was no big deal. The reason they did the test was I had an illness that made them suspicious, so I was getting better when they did the test and subsequently put me on steroids and don't know how much to attribute to the steroids and how much to just getting better anyway.

I didn't really ever have much in the way of fatigue, pre or post diagnosis.


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