Has anyone ever had a Synacthen test?

[Erin001]

Hi, I have been told that at some point I will need this test called Synacthen to see if my body can naturally produce steroids

Has anyone else had this test

How is it done? What is the procedure??

Thank you everyone

[Bronagh2015]

Hi Erin001, yes I've had this none and it's just honestly no bother at all. You have a blood sample taken then you are given an injection, I forget what exactly that is, then after an hour or two you have another blood sample taken. I got the result about 10 days later and unfortunately my body had stopped making cortisone due to 20 years of low, high and extremely high steroids for MCTD as well as Asthma. This means I'm on 5mg Prednisolone for evermore and if I ever can't take them due to sickness I have to go into hospital to get it in drip form, also if I'm in an accident or serious shock I've to be given a high dose. Hope is of some help to you. Bronagh 😊

[Erin001 in reply to Bronagh2015]

Thx you that is very helpful i just wanted to know what it is in advanced so I know what to expect

[MikeWhite in reply to Erin001]

Hi Erin,

Yes, I've had it had this test too due to long term steroid use. Basically as Bronagh has advised- You have An initial blood test to get a baseline of your cortisol, then injected with synacthen a synthetic acth which should stimulate the production of cortisol. You then have two further blood tests - one almost immediately after the injection and one 30 mins or so later. I was told if all was ok I would feel a bit of a high but nothing. Results showed that I had adrenal suppression due to longterm steroid use so now take hydrocortisone three times a day. Have an emergency injection kit and you just have to follow guidelines for sickness, diarrhoea accidents and any dentistry or surgery.

I see an endocrinologist every three months who advised that my thyroid and testosterone levels were also affected.

If you do have adrenal suppression it's easily managed just follow the guidelines and take your medication / the risk is adrenal crisis which leads to coma and worse

It's like Addison's disease - see addisons.org where there is lots of useful info.

I experienced increased thirst, fatigue and muscle weakness, cramps and dizziness which are all signs of adrenal suppression.

These have all gone now following correct medication.

Good luck

Mike

[Erin001 in reply to MikeWhite]

What medication do you have to take steroids or what??

[MikeWhite in reply to Erin001]

For the adrenal insufficiency I take hydrocortisone three times a day

Then thyroxine for thyroid and testosterone

Then a mix of asthma drugs - 6 in total I think

[Erin001 in reply to MikeWhite]

Ok thx you

[Erin001 in reply to Erin001]

What if you get a chest infection if you have this?

Do you get given steroids like normal or do you have to have special treatment?

How does it all work

[MikeWhite in reply to Erin001]

Normal treatment - I was back on prednisolone 40mg per day last August - managed to ween off by Nov - I was told to carry on with the hydrocortisone while on pred.

Try not to worry about this if you do have adrenal suppression you will be fine as long as you keep taking the medication and understand what you need to do with regards to sickness, accidents or planned medical procedures - it's really only dangerous if you go undiagnosed

Mike

[Hidden]

Hi I am supposed to have that test but I felt a little scared so I haven't booked it so far..I have asked the LAM specialist if he thought I could have it because they inject hormones and I have an hormone based disease.

So I am waiting for the answer. Hope all goes well for you.

[Erin001 in reply to Hidden]

Thx you

What r u afraid of?

[Hidden in reply to Erin001]

I have LAM lymphangioleiomyomatosis a hormone based cystic lung disease. Can't take oestrogen for example. I don't want any hormone based injection.

The endoctrinologist told me that people with adrenal glands insufficiency can hardly move with chronic fatigue which isn't my case for now I exercise etc so I think I will have another cortisol test after the summer and see.