adrenal glands not working

Hi all.

just after a little bit of info.

My daughter had a synthacten test last week and yesterday her consultant rang me to tell me that unfortunately the test showed that her adrenal glands were not working as well as they should be. My daughter has now got to have a supply of hydrocortisone on standby and has to carry a card with her at all times.

If anyone has the same can you tell me in what circumstances have you used the hydrocortisone. I am expecting some info in the post from the hospital and the consultant said it reads quite alarming but not to read too much into it,

Thanks everyone

M

3 Replies

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  • I assume you mean she will have injectable hydrocortisone? In which case she would use if she was unwell with vomiting etc and couldnt take her oral steroids.

    If it is oral hydrocortisone, she would take it if she was unwell from something other than asthma - so infection, any other illness really.

    addisons.org.uk is the addison's disease website - basically although her adrenal insufficiency is secondary to steroid use, it is pretty much the same as addisons - so you should get helpful info there.

    S

  • Hi S

    Thanks for replying as far as i am aware it is tablet form (injections were not mentioned) I am still waiting for the letter from the hospital.

    My next thing is ensuring my daughter realizes the seriousness and the need to carry her steroid card with her. She seems completely in denial at the moment do you know where i can get some good leaflets to show her. Also do you think it would be a good idea to get her a medi bracelet i have seen some nice trendy ones on a web site that a 15 year old might wear.

    Thanks again

    M

  • Hello mellers

    I was diagnosed after several short synacthen tests as having non-functioning adrenal glands (due to a problem with my pituitary gland). As a result, I now take 20mgs of hydrcortisone a day in three divided doses. When you say that your daughter has to keep ""a supply of hydrocortisone on standby"", I presume you mean keeping injectable hydrocortisone at home for use when she is unable to take oral hydrocortisone? I have never had to use the injectable h/c, but my understanding is that I need to take it if I ever have vomiting / diarrhoea, or am just too ill in some way and cannot tolerate oral meds.

    Not sure if this helps - feel free to send me a private message if you want to talk about it some more.

    (Oh about the ID bracelet - my endocrinologist told me in the strongest possible terms that I MUST get one, so I would recommend it. If you have an accident, or need an emergency operation, a&e staff must know that your adrenal glands aren't working, because they need to give you additional steroids to help you cope with the physical stress of an accident / operation).

    Good luck to you and your daughter.

    Maz

    xx

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