Addison's Disease Support Group

Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone

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Addison's disease question.

Couple questions to throw out there. I'm new to the support group as of today, and I am VERY ENCOURAGED to find other people I can talk to about this Addison's disease diagnosis, as well as some that I could maybe help.
Does anybody know if Addison's disease does irreversible damage to other organs in the body before it shows symptoms and is diagnosed? Apparently my adrenal glands were destroyed from multiple physical and surgical trauma and ENT surgery hemorrhage...but my endo doctor has told me absolutely NOTHING useful. I've been looking online for information about Addison's, and I am VERY surprised it is such a serious condition and my doctor has not informed me about it at all.
I didn't know it was life-long. I didn't know it was incurable. He didn't tell me I should be careful regarding adrenal "crisis" or that it could lead to other serious health problems, such as heart problems.
Also - I have had cloudy urine for months now, and when I asked him about it, he asked me if I was having any pain with urination, and I said no. He said "Don't worry about it then." I never had a problem with cloudy urine before starting treatment for Addison's disease.
My husband would like to know if Addison's disease is going to shorten my life.
Seems like Addison's disease could get mixed up in a lot of different diagnoses. A lot of complex stuff involved when hormones go awry...

Well, just sticking my neck out there...Thanks in advance for any info. I also have Human Growth Hormone Deficiency (HGHD), Hypothyroidism, high blood pressure, and postmenopausal hormone deficiency, on Hormone Replacement Therapy (HRT), just in case anybody's got any questions about those diagnoses. Yup - I'm a mess....
:) meadowinthewoods

Replies

JenCG
JenCG

Hi and welcome. I am still in the process of diagnosis, meanwhile my adrenal hormones are being knocked out and the endo is still running tests to find out the cause. This link will take you to a very helpful website where the owner will respond to any questions you want to ask.

http://www.addisons-network.co.uk/

Hope you find it useful.
deleted_user
deleted_user

Thank you Jen. I just came online to check email and support group message board. I've got to get right back outahere and eat/take meds and get going. Going to church tonight. They just started an offshoot of Calvary Chapel Chico at my best friend's house on Wed nights, so this will be the first time I get to go for quite some time. Health has been a problem, plus a 45 minute drive to Chico. Now it's only 10 minutes away. Feel pretty good tonight. Slept almost all day, just to gather the energy for some reason today. Never know exactly which hormone is kerput when this happens. Taking meds as prescribed and authorized...just sometimes they don't work so good. Talk to you later. It will be so very nice to have other people with Addison's to talk to. I will check out the website you gave either tonight or tomorrow. I am so happy to meet you! Later Gator...
:) meadowinthewoods
Sam1982
Sam1982

Hello...My name is Samantha and I am 25 years old.I have both Addisons and Graves disease. Do you have instant message on ur PC or do you get online via daily strength? Let me know and I can try to clear up some of your questions. I have been living and dealing with Addison's for some time now. I am not a doc but as many of us know, the diplomas on their wall does not mean they have a clue. If u or any one else with Addison's wanna chat just lemme know. Support is always a good thing!
Samantha Ann :)
deleted_user
deleted_user

I know this isn't much help; but I've had Addinson's as well as Type 2 Diabetes, Thyroid Disease, High Blood Pressure and Asthma since 1997. Yes---Addinson's IS incurable; but it CAN be managable. It's just a pain in the neck; especially is you have to have any kind of medical procedure done. Hang in there; stay with this group; and you'll be just fine.
deleted_user
deleted_user

Hi! I've been taking cortef for 25 years and have developed cataracts. So far, this seems to be the only long term side effect for me from taking cortisone. I also take synthroid, HRT.
If you are not happy with the endo you are seeing, look for another. I know I have run through about 5 in 25 years until I found my current dr.
siouxdax
siouxdax

Hello:
I'm an Addisonian, and was diagnosed in 1999. I also asked about other glands. From what I understand, polyglandular problems typically arise when Addison's disease was caused by auto-immune means. In my case, the doctors think I was born with it. I can also understand your frustration about details of the disease when it is first diagnosed. I didn't know that the corticosteroids would put me at a higher risk of osteoporosis (sp?). One thing you should jump on is the link of corticosteroid treatment with a very high risk of diabetes. I was diagnosed with type 2 (now insulin dependent), caused by the years and years of taking hydrocortisone.

As for your question about shortening of your life: that would vary from person to person. I've met Addisonians that live very active lives, but then I am in such bad shape I've been on diability for years now. I see my primary doctor nearly every month. Also these symptoms caused me to have severe depression and Borderline Personality Disorder.

I hope this helps you in some way. You're always welcome to email me with questions, or if you just need a little support.

I send you great hugs. I know I needed them when I was where you are.
deleted_user
deleted_user

Hello everyone. I am new to Addison's as well, in fact, I was just diagnosed yesterday. I also have CVID which is a pretty big deal, but now this too... I am overwhelmed and nervous. With such a serious disorder as CVID I don't know how I am going to take steriods. I have previously been forbiddent any steriods because of my broken immune system. Can anyone relate to this? I would be thrilled with any feedback. Thanks to all in advance.
Sunshineinthemorning
Sunshineinthemorning

Hi Jen,
It is such a rare disease that most docs don't know much about it.
You have to search for knowledgeable ones and that isn't easy.
I was warned by a good doc in Belgium not to take Humane Growth Hormone, it will bring the adrenal down. It is good for normal people.
HRT is good, especially bio-identical. Addison's affects the hormone balance too.
Hope this helps. Hugs to you.
Sunshine.