I'm going to do a little experiment. If you or a family member has adrenal insufficiency, would you be willing to post a comment and say why you have AI? I believe there are at least 60 reasons a person could be adrenal insufficient, and it would be interesting to see how many representatives of each of these reasons we could have post.
With Annie, we never discovered why she had primary Addison's, because she had no adrenal cortex antibodies. Her autopsy report showed that she had something wrong with her pancreas, too, as it was mostly fatty tissue. But again, so far, we don't know what caused that, or the Addison's.
The thing I think is important, though, is that no matter what caused a person's adrenal insufficiency, the effects on a person's life are very similar. So although there may be many different disease processes that cause AI, the daily struggles in keeping your body running well on supplemental steroids are quite similar.
Who wants to go first?
Jean
31 comments:
No one knows why I have it. I could be primary or secondary. Test results indicate Primary, an MRI with contrast indicates secondary.
Often if an autoimmune attack is not happening at the time of the blood draw or if the tissue is destroyed, the test for antibodies will be negative. Additionally, the right antibody test has to be done. I only had one antibody test done, not both.
I also believe supraphysiologic doses of steroids can suppress autoimmune markers.
Dusty
That is all very interesting. I didn't know about different kinds of antibody tests. I don't know which one Annie had. And, it does stand to reason that higher steroid doses than your body normally produces might affect the results. Hmmm.
I need to research that more, because my concern is always for the rest of her siblings--are they more susceptible to getting her type of AI?
Thanks for posting, Dusty. And to anyone else--Dusty's website, Addison's Support, is a gold mine of information--see the link on my blog roll.
Jean,
Thanks for the shout out!
Definitely research anything I say because I usually just remember the gist of things and lose the details. I wish I could blame it on AI but I think it's just age!
As far as the heredity bit goes, what I understand it that autoimmune disease in general is hereditary and it runs in families but not AI specifically. Do you have grandparents, aunts and uncles, cousins who died of mysterious causes? A lot of us think that those were undiagnosed autoimmune diseases.
:) Dusty
www.addisonssupport.com (Forum)
www.addisonssupport.blogspot.com (blog)
I am 56 and have adrenal insufficiency probably from long tern cortisone use. i wonder though as the symptoms have been there since I started on cortisone over 30 years ago. I've never really been able to wean off it as others did; I would always get sick. Today I am on cortef for good.
Hi Holly--Thanks for chiming in here. I have been curious about people who might be adrenal insufficient because of long term cortisone use, so I appreciate you sharing your story. I've always wondered how many people who use steroids over a long period of time and then go into adrenal crisis don't know what's happening?
Anyway--I took a look at your blog--your quilts are beautiful, and your pictures of the snow in New Brunswick are very cool, too! Do you ever write about your experiences with adrenal insufficiency on your blog? You seem to lead a pretty active life, and it doesn't seem to slow you down at all!
I was diagnosed 3 yrs ago. My Endo told me we'd never really know but he and I both suspected the horrible case of mono I got a yr before being diagnosed with Addison's, attacked the adrenal glands and destroyed them. But we'll never know.
I was diagnosed in 2001, after going into a code at 33 years of age while hospitalized. I was told it was auto-immune related and I began treatment for Primary Addison's immediately after all testing had been performed.
God made our bodes so perfectly, that if one thing goes wrong, we clearly see how He made everything to work in conjunction with the next thing...it's so hard for man to try to simulate God's work. We try, but it's never adequate, although, it can be helpful. I am thankful for my medication, but the synthetic version of these hormones will never mirror the real deal.
I think about you and Annie often. She was a little fireball of a sweetheart! I'm so glad you went to a group and I'd love to hear more about it if you'd like to write about it. Such as plain advice to the rest of us about what this group of mothers believe can be the right or wrong things to say. I truly would like to know.
My thoughts and prayers are with you. Thanks for doing your own research.
Lana
Thanks for posting, Tracy. I looked at your blog--your photographs are great! I do have a question--did you feel weak and have a tan before the mono?
Lana--you've given me the idea for my next post! I'll put it up today. ;-) Thanks for following and remembering Miss Annalee.
Hi,my daughter is 14 months she has SwCAH. Praying for you. Thank you for sharing Annie's story.
Thanks for posting--do you know about the Facebook page "Parents of Adrenal Insufficient Children"? It's a great place to find support and help for the unique challenges parents face.
My also 14 mth old daughter has CAH. She is an amazing blessing and we all adore her, she is a mystery. Thought "why" so many times & still have those days on occasion but we are fortunate that we have never gone onto crisis though we always must stand guarded & ready. Annie was born on my dad's actual bday into Heaven, comforts me to know that day was a blessing after all. I will keep all of you in my thoughts & prayers.
I just read about Anna and started reading through your blog. Hugs to you.
I have adrenal insufficiency because I had Cushing's Disease due to a pituitary tumor. Removing the tumor did not cure me, so my adrenal glands were removed to control my Cushing's. I had the disease for almost 25 years before finding a doctor who knew what it was, and it took another 5 years for a "cure".
Sadly, there are many of us and we trade the Cushing's for adrenal insufficiency because we can control it better. We have what is called a bilateral adrenalectomy to remove the adrenal glands. I now take hydrocortisone and fludrocortisone, salt tablets, and other hormones due to the tumor's affect on my pitutiary gland. I also carry solu-cortef act-o-vials with syringes and have extra vials every where.
I am so sorry for the loss of Anna. I can see the love in your family, and I know you miss her.
Thanks, Becca, for posting. Like you say, you need to stand guarded and ready!
Robin--I looked at your blog--what a story! I am so glad you finally got to the bottom of the problem, and have been able to manage the new you. You do look great! One of my friends has daughters who had Cushings and now have AI. It's a hard solution, but I guess it's what works.
I am so sorry for the loss of your sweet daughter. Thank you for sharing her story. My three month old son has been diagnosed with secondary adrenal insufficiency and hypothyroidism due to a small, slightly misplaced pituitary gland. So far, his testosterone and growth hormone levels are normal, but that could change in the next few months. We feel fortunate that he has complete adrenal insufficiency as this led to him being diagnosed very quickly. He takes hydrocortisone three times daily and synthroid once daily. He is growing like a weed, meeting all of his milestones and is the picture of health and happiness. This is a lifelong condition and we pray that he, and others with similar conditions, continue to respond to treatment. Maybe their lives will help increase awareness and further treatment of this condition.
Dear Anonymous:
Thanks for posting, and for sharing your son's story. I am so glad he was diagnosed in time, which, of course, is key in managing adrenal insufficiency. I wish him a great, long life, and you wisdom in being his mommy!
My son Keegan will be 6 in June and was diagnosed with Septo-Optic Dysplasia at birth. He takes medications to replace the hormones his body doesn't produce, cortisol is one of them.
We just had a serious adrenal crisis scare this month... After writing about it in my blog I started reading about other kids with AI and found your blog. Thank God! & Thank You for sharing!!!
Krystal
my daughter was diagnosed when she was 16 with adrenal insufficiency ! Her personally had changed , depression giving things away ,( her bedroom was almost empty ) She stopped hanging out with friend would not tex on the phone ! She couldn't she was confused and altered for months , When she would NOT wake up on morning we rushed her to ER there it took days to find out!
Thanks for posting! What a hard thing you went through to get your daughter diagnosed. How is she doing now?
Thank you so much for this website! I am so very, very sorry about your beloved daughter. I am an ER RN who travels frequently. My husband and I went to Belize in October of 1012. Five days after we returned I became seriously ill. Out of nowhere I began to run a temperature of 105 and I became septic. My blood cultures tested positive for a rare type of strep called gemella. I was on multiple antibiotics and seeing an infectious disease specialist. No one could figure out why I remained so ill. I had a CT scan done of my lungs as I also had bilateral pneumonia. Thankfully it showed a growth on my adrenal gland. I say thankfully because this led my primary care Dr to run adrenal labs. BINGO! My cortisol levels were barely detectable. The theory my Dr's have come up with is that the infection wiped out my adrenal glands and my pituitary gland is affected as well. This led them to send me to an endocrinologist who did an Insulin Supression Test which I failed terribly. I was placed on cortisol and human growth hormone injections. We are having a very difficult time managing my disease. My cortisol levels remain very low despite treatment with hydrocortisone. I found your blog after speaking with my MD yesterday and he mentioned the new use of a pump for infusing cortisol. He said it is a new treatment and very difficult to do because it is not FDA approved at this time. My life changed forever after getting this disease. I have gone from being a very busy ER Nurse to fighting each day to have the energy to make it through the day. People are very uninformed about this disease as was I, even being a nurse. Thank you, thank you, for this blog and educating the public about the tragic consequences of this disease. I worked for twelve years in a large pediatric ER and I don't recall ever seeing a case of adrenal crisis. You are certainly honoring your daughters memory by getting the word out there about Addisons. Thank you and God bless!
Should have said 2012.
CheylRN--
I am so sorry you've had such a crummy road of adrenal insufficiency! I do have an idea, though. I know someone who is also in the medical field and does the pump, so contact me on the link in the side bar, and we'll see what we can do to help you.
Take care--looking forward to hearing from you!
I'm a 71 year old female who was diagnosed with adrenal insufficiency in 1985. My AI is caused by hypopituitarism. My primary diagnosis of hypopituitarism subsequently caused secondary diagnoses of AI, hypothyroidism, and hypogonadism. I was diagnosed with all of the above in 1960 except for AI which wasn't diagnosed until 1995. However, I believe I had AI for several years prior to diagnosis as I had much difficulty weaning off cortisone medication prescribed for poison ivy outbreaks in the years prior to diagnosis. My physician believes I have an undiagnosed autoimmune disease responsible for my endocrine problems but tests have not detected anything. I am prescribed hydrocortisone and do well except for energy drops, shakiness, etc. in mid afternoon. Thank you for this blog.
Thank you, Karan, for posting. It sounds like the cortisone medication for the poison ivy might have suppressed your normal adrenal function. But you probably already know that!
I wonder, too, if you might want to adjust your medication so you don't suffer the energy drops in the afternoon. Many people take hydrocortisone 3-4 times a day to prevent that drop. How many times a day do you dose now?
Jean
I acquired SAI as a result of short term, (2.5 months) high dosage oral and injected steroids. I suffered misdiagnosed Cushings Syndrome during treatment, then my Dr. failed to wean me with dose tapering. Very sorry for your loss.
I became very ill last Sept. I became so tired I could not function, depressed,etc. I lost from 130 LBS to 87 in a month's time.I knew something was terribly wrong. My prim care dr, thankfully, had just gotten back from a seminar regarding hormones that also taught about this disease. She tested my cortisol levels which showed 0.6 which caused her to send me to my endo. After father testing,I was diagnosed with AI & started on steroids.I have been on hydrocortisone until last wk when I was placed on prednisone. The reason for the change is because I was still having no quality of life at all & another check of my cortisol levels showed the same as before. My endo thinks my body is either breaking it down too fast or not processing it at all. The prednisone has not helped either so I'm to the point of thinking about the pump. I just broke down crying tonite for no reason-I guess really out of lack of frustration bc my quality of life is horrible.This lead me to your site. My dr feels like my AI is auto immune AI. I'm not great with computers, blogging,etc so I'm not quite sure how to contact u privately. I saw in an earlier response that you knew someone in the med field that uses the pump and can may help. I know this probably isn't the smartest thing to do, but at this point I'm desperate to have some kind of life, so I'm going to post my number. If you will, pls contact me so I can get any info that will help. My number is 731-377-1882. I would appreciate any info or help at all. Thank you for what you're doing bc it's absolutely God that let me run upon your touching story!
Anonymous,
You can also try my forum, Addison's Support, for help. www.addisonssupport.blogspot.com.
Jean, I hope you don't mind me posting this. If so, please delete this comment.
Dusty
Not at all, Dusty--I appreciate you picking this up! Your blog was an absolute lifeline to me on so many occasions!
Thank you Jean! I hope you and your crew are doing well! <3
My son was diagnosed at 17. He was very sick, lost a lot of weight and had no energy. It was a miracle he was diagnosed. It was a off hand comment my husband made to the doctor about how his skin is so tan. My son was in adrenal crisis and in bad shape when he was finally diagnosed with Addison Disease. They do not know what caused it. He is a young adult and even when he gets a cold he is out for like a month at a time which makes it very had to hold down a job.
I'm so sorry, Elizabeth. I am glad he was diagnosed, but wow, it sounds like this is very hard for him still. I've just found a good Facebook page "Addison's Disease Support Group." Hopefully he can get some help there, if you guys haven't already.
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