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Males with Addisons
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I am wanting to hear from males with Addisons. My husband got addisons after having surgery and bleeding into his adrenal glands.
He origionally had "inadequate response" to ACTH Stim test while in crisis.
He has recently had another test and long story short, his Cortisol level was 10nmol/L 40 mins aftr ACTH injected (yes 10, no not mcg/dL). The mcg/dL equivalent is 0.363mcg/dL. Suffice too say he started going into shock during the test.

He technically no longer has adrenal glands.

What I want to know is, are there any men out there who have had acute onset of addisons, that otherwise were in good health. I am trying to find out what we are in store for health wise. He was in great health before the incident.

I am looking for men as women have other issues with hormones etc, which change the way Addison's affects the body.

Thanks for your help in advance.
Posted on 02/12/13, 12:49 am
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Reply #1 - 02/12/13  4:09am
" Hi, I know there are a couple of guys from NZ who post on this board if that helps. However you are wise to ask questions and find out as much as you can about Addison's. Below are a couple of links for UK sites. Both have forums which have worldwide members. There is a lot of info there and some can be printed and kept (emergency letter etc). I hope those links help.I know the tech design guy for the ADSHG site is still able to run marathons and he has had Addison's for some while.There are a lot of very helpful folk here who will offer support and advice, but in the end your husband will have to go with what suits him as we are all different.

Good luck Jen x "
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Reply #2 - 02/15/13  12:46am
" I did not suffer from acute onset but the overall problems should be similar. Having acute onset means that he should have been diagnosed quickly and that he didn't go through the usual months to years of being sick before getting diagnosed I hope! As long as he takes his steroids he should be fine but it takes time to fine tune them. My doctor rarely tests my cortisol or ACTH anymore and they just let me self medicate, within a range, to some extent. Ex. I am on 20/10/10 of hydrocortisone daily but depending on my activity and if I get sick it could go up or down. I start by taking a small amount more and wait 30 minutes and then if I don't start to feel better I increase it more. If I start vomiting I have an emergency injection of solu cortef 100mg and I inject it and if that doesn't fix it I go to the ER and they typically hit me with fluids and more steroids.

Make sure that they check his aldosterone levels as well because if his entire adrenals have failed he will most likely need a replacement like florinef.

Also have them test his testosterone levels as they can be affected as well.

As far as what he is in for it really varies from person to person but overall summary is that you can have an active full life but you have to know your limits and know what to do when you get sick, go hiking, run a marathon etc... Its a juggling act and sometimes its easy to get depressed. He will most likely not tolerate stress very well, that is my big killer.

Hope this is helpful and I have loads more info if you need "
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Reply #3 - 02/25/13  10:28pm
" Hi Chancy03. I wasn't sure if I registered as myself or my husband so I reply as either/both.

Thank you for the info. He was diagnoised while in CCU in adrenal crisis. His specialist has finally put him on florief but only after we asked about it. His BP etc is also now more controlled. we are not too worriekd about his testosterone as the cause of all this was surgery for Prostate cancer. Testosterone was is now the least of our worries.
As for the rest, thank you for your help. It is good to hear from people who are managing as a lot of the forums I have found so far are mainly with those that have problems.
Your reply is very reassuring. "

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