On August 2, 2004 my son Kristopher, age 25, died from Addison's Disease. Like most of you here, he had gone to the Drs. and even been admitted to the hospital with ALL the symptoms of Addison's but was NEVER diagnosed. They kept telling us nothing was wrong and on the last visit, 2 weeks before he died, he was diagnosed with depression and given Zoloft. It was a senseless death. Kris was a wonderful young man with a young wife and a little girl who are lost without him. We are ALL lost without his smile, his voice....I cannot beleive I will never see him again in this world. I alternate between rage at the Drs. who let him die and grief over a loss that I will NEVER get over. :(

The reason I came here and posted this msg. is simple. If you think you have Addison's....PLEASE don't wait to seek help...if one Dr. doesn't satify you then PLEASE go to another. I don't want anyone to suffer the way Kris did...mostly in silence because the Drs. said there was nothing wrong. I don't want any family to go through what my family has gone through!!

Annie -
I am so sorry to hear about your loss. I understand your frustrations with the dr's. I am sure when you look back, it is hard not to blame them. I am also sure you have many fond memories and experiences with your son; it sounds like he was a great man. I pray for peace in your heart and your family's lives as you deal with the grief you feel.
God Bless -
LM

Thank you for the kind words. Nothing will ever bring my son back but if I can reach one other person and save a life, his death would have meaning.

Annie, Your story makes me cry. Why can't the doctors see what's before their eyes? Have you met with the doctors involved? Sorry you are suffering so & hope in time you will find some peace. I cannot imagine the hurt from your loss.
Wanda



On August 2, 2004 my son Kristopher, age 25, died from Addison's Disease. Like most of you here, he had gone to the Drs. and even been admitted to the hospital with ALL the symptoms of Addison's but was NEVER diagnosed. They kept telling us nothing was wrong and on the last visit, 2 weeks before he died, he was diagnosed with depression and given Zoloft. It was a senseless death. Kris was a wonderful young man with a young wife and a little girl who are lost without him. We are ALL lost without his smile, his voice....I cannot beleive I will never see him again in this world. I alternate between rage at the Drs. who let him die and grief over a loss that I will NEVER get over. :(

The reason I came here and posted this msg. is simple. If you think you have Addison's....PLEASE don't wait to seek help...if one Dr. doesn't satify you then PLEASE go to another. I don't want anyone to suffer the way Kris did...mostly in silence because the Drs. said there was nothing wrong. I don't want any family to go through what my family has gone through!!

Wanda,

Thank you for you kind words. It is appreciated. No, I am unable to talk to the Drs. because of a pending lawsuit. I wish I could ask them questions but for now, I hold them inside until a later date.

Annie

Annie, Thank you so much for posting in the hopes to save other lives! It must be very hard to talk about, and yet I know it must also help to talk about it with those who can understand your anger AND your grief! I am so sorry you did not find a doctor who knew how to help your son before it was too late. At some time when you feel you can, would you mind conveying a small history of his symptoms and the details of his condition. Did he gradually just get worse and worse as time went by, or stay about the same until a crisis took him away? Thank you for caring enough to post here. May the support others can give help YOU in return. (I am on these boards to try to get a diagnosis and treatment for my 16 yr. old son, who has been ill since Nov., 2003. His condition seems somewhat chronic or stagnant, without his getting better or worse.) Am very anxious to find help for him. May God bless you and your family, Tracy

Wow! I was just lurking, I have no idea what Addisons is. But I read the post by the father who lost his boy to this condition and I was compelled to post my condolences. It is a touching story and I'm sorry you and your family have lost a promising young man.

God Bless.

Tracy,

Thanks you for your kind words and caring. It is very hard to come here and talk about Kris but at the same time I want, NO I NEED to get the word out that this is disease is fatal if not treated and to make Kris' death stand for something.

Annie

I will post more about the progression of Kris' disease later when I am not at work.


Annie, Thank you so much for posting in the hopes to save other lives! It must be very hard to talk about, and yet I know it must also help to talk about it with those who can understand your anger AND your grief! I am so sorry you did not find a doctor who knew how to help your son before it was too late. At some time when you feel you can, would you mind conveying a small history of his symptoms and the details of his condition. Did he gradually just get worse and worse as time went by, or stay about the same until a crisis took him away? Thank you for caring enough to post here. May the support others can give help YOU in return. (I am on these boards to try to get a diagnosis and treatment for my 16 yr. old son, who has been ill since Nov., 2003. His condition seems somewhat chronic or stagnant, without his getting better or worse.) Am very anxious to find help for him. May God bless you and your family, Tracy

I'm so sorry about your loss. Unfortunately, this nightmare story has probably happened to others, and it will probably happen again. :( I don't understand why random serum cortisol isn't one of the first tests ordered for unexplained weight loss. It's such a simple test....

Thank you for sharing this with us. I hope your story helps others. Perhaps you should write your story and send it to a magazine. Have you considered this? Your loss could save other lives, and sharing your story might be a catharsis for you as well.

((hugs))

Deb,

We are working on an article to submit to magazines as we speak. There is a lawsuit pending so I have to be careful. I am hoping that by getting the word out that we can save others from this senseless trajedy.

Annie

Annie,

I am so sorry to hear of your loss. I almost died before I was dianosed with Addison's disease. I had been presenting with symptoms for 4 months, was at the doctor's office almost everyday, and had 3 hospital admissions, was being fed via peripheral vein and cathiderized and basically a vegetable before I was finally diagnosed. I know that if I had gone undiagnosed for another month I would have died. I am very lucky and feel very privaleged to be alive.

Since being diagnosed, I have been doing advocacy work at medical schools. Keep up the work and be strong.

Annie -- wow, I just posted to you on another thread which was old, and then saw this one.

I wanted to suggest that you report what happened to your son, here:

http://www.cchr.org/issues/solutions/report/index.htm

This organization is actually doing something about exposing this sort of crime (that ended up killing your son).

I really feel for you.

Annie,

I'm SO sorry to hear about your son. I cannot even imagine what you and your family are going through.

If you get a chance, I would like to hear about his symptoms and the progression he experienced. I am also 25 years old and have had an "adrenal adenoma" diagnosed on a CT scan, but the doctors cannot figure out what hormonal changes are occurring in lab tests. I see the endocrinologist in a few weeks time.

I admire your courage in posting on these boards and trying to help others in honour of your son's life. His life was cut short much too soon, by a disease that shouldn't have been allowed to do it.

My thoughts are with you,
HB

Annie !

Im sorry to hear, that your son had died from addison disease.I come from denmark, and in 1984, i was really close to die from addison to.So i really feel with you, in this difficult situation.Its hard to understand that your son has been prescribed zoloft, instead of cortisol.Right now im crying, because i have been fighting 4 years, before the diagnose was found.If you feel need for talking more about it, i will always be there.

Many regards Oflanigan.

Dear Annie,
I'm so sorry for the lose of your son, I know you have a broken heart and just trying to get threw you day must seem impossable at time's. Your son would be proud of you for putting the post you did on this Addison board, He would want you to help and warn other's about this disease. I have a friend who resently lost her son to a heart condition, her world came crashing down, she has been having panic attack's and depression, you have a long journey ahead of you, you will never get ovet his but love your Granddaughter and hold her close, she is a part of your son and she needs you now like you need her, that's what your son would want you to do.
, he know's your a great person.
Karen W.

I wanted to say that I am so sorry for your loss. Sometimes our medical system just doesn't do the work it should. Our son luckily didn't die, but went into a coma before the er's finally did blood work to identify what he had wrong then from there we were transfered to a pediatric hospital whre we stayed in ICU until he awoke. I thought I had lost him. I lost his brother to another condition 5 yrs before I had Justen, I can't say to you that I know what you are feeling because I don't. people tried to say that to me when I was going through it, and they didn't understand. i am so sorry, and I pray that the lord will comfort you and your family in this time. Lyn

My brother has Addison's disease and he was not diagnosed until he was going into shock. His family doctor did run a blood test the previous year because he was suspicious of Addison's. At that time all the blood work came back negative. In the early stages of adrenal failure blood work may be normal at times thus making an accurate early diagnosis sometimes difficult. Once diagnosed he was quickly put on hormone replacement and has been doing well ever since. So sorry to hear of your loss.

Dear "Pooby",

I'm glad your brother is doing well now. Could I impose upon you to explain how he felt the year or so prior to diagnosis, and how it impacted his activity level, schooling, if applicable, etc? My son is dealing with what seem like adrenal issues, but tests ARE normal, as you say, except for suspicious low aldosterone by itself, and a steadily rising (but normal) TSH. Knowing what your brother felt like when his tests were still coming out normal might help us tremendously. Thanks ahead of time, :wave: Tracy

First my brother lost weight and his skin color darkened considerably. We just thought he was tanning as he always did. He started craving meat not so strange as when Addison's is untreated muscles start to waste. His body was merely trying to take in more protein.

The skin color change is very much a major symptom of Addisons. He also was very tired all the time. Again he thought the low energy level was merely a sign of getting older.

Hope this helps. I can tell you this the blood levels did change as the disease progressed and normal levels no longer showed. It was a year from the first time his Dr had checked with no abnormal levels until he was admitted into the emergency at the hospital. I can tell you this that once he received hormone replacement there was immediate improvement. He was instantly back to his normal energetic self.

Thanks, Pooby!

I'm glad things turned out so well for your brother. I know about the skin coloring, and my son does not exhibit it. Perhaps he will turn out to have something else wrong. Take good care, Tracy

I am so sorry about your son. Loving thoughts and prayers for your family.

Dear Annie, i am so very sorry to hear of your loss. it must be too hard to bear, knowing it could have been prevented. i'm afraid to say, the medical profession is so blind when it comes to Addison's. i had to diagnose myself, online, and later got it confirmed, not by an internist or endo., but by a dermatologist! (she actually looked it up in a book!) More than once, a nurse has had to ask me, "Tell me what that is?" i see a huge need for awareness! i tend to be a bit of an activist, and i often ask myself why i'm not doing more to raise awareness about Addison's. As of now, my answer is that i'm feeling too weak. But, after reading your letter, i'm more determined to do something....even if in a small way, for now. Annie, thank you for caring about all the others, even when you're feeling pain. There is a lot more we all can do, to get this better known, and for Drs to take it seriously!