Do you have adrenal insufficiency?

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

Jean

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28 Comments on “Do you have adrenal insufficiency?

  1. 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

  2. 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.

  3. 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
    http://www.addisonssupport.com (Forum)
    http://www.addisonssupport.blogspot.com (blog)

  4. 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.

  5. 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!

  6. 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.

    • That is interesting. Both of my children (girl and boy) had trouble recovering always when they were little from sickness i.e ear infections, colds etc. My son was more fragile at those times and he was misdiagnosed as having a learning disability only at times of sickness?? By fourth grade he no longer had the “learning disability” because he was no longer getting sick. With both kids we had to be sure to treat them quickly with antibiotics if sick. Both kids were strong athletes and were completely fine until my daughter got mono her first yr of high school. It took her 1 1/2 yrs to get over it. My son was fine until he got mono his sr yr of school and went into complete crisis. Weight loss-55 lbs, seizures, fainting, memory loss, pallor, twitching, circulatory collapse, vision disturbances, personality change etc. In testing he had low serum sodium and had hypoglycemia. He has been dx with ACTH deficiency and is treated on fairly high dose hydrocortisone -45 mg hydrocortisone, 4 mg prednisone and will have to also have fludrocortisone. His sister in college has ended up in the ER whenever she has mild sickness. She is otherwise a strong D1 athlete but a common cold will flatten her. She has ACTH deficiency and water sodium balance as well. She will be getting treated this month. Meanwhile, my father-in-law has just been dx with ACTH deficiency after hypotension and collapse just like my son had at 18. His grandfather is 85! Also, my son and I have a pituitary tumor and so does my father-in-law. I have ACTH deficiecy and now recognize the symptoms in multiple family members! My daughter has not had an MRI of her pituitary yet. ????

  7. 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

  8. 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?

  9. Lana–you’ve given me the idea for my next post! I’ll put it up today. 😉 Thanks for following and remembering Miss Annalee.

  10. Hi,my daughter is 14 months she has SwCAH. Praying for you. Thank you for sharing Annie’s story.

  11. 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.

  12. 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.

  13. 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.

  14. 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.

  15. 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.

  16. 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!

  17. 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

  18. I am concerned about my 14year old son. He has had the ATCH test starting level was 7 and cortisol rose to 13, the MD told me normal low was 20 and she would have wanted him at 28. They want to retest him in 6 weeks. His fatigue symptoms seem to be worse this week and I am not sure I want to wait 6 weeks. Is there a reason to wait? My research leads me to believe he is in primary adrenal insufficiency, is this Addison’s disease? or is Addison’s disease not able to produce any cortisol with ATCH? What additional test do you believe I should ask for him to be tested for?
    Worried Mom

    • Diane–

      I am so sorry you are in this position–and I would be concerned, too. You didn’t say if your doctor is an endocrinologist. First, I would take him to an endocrinologist. If you don’t have one, and you can tell me where you live, I can try and recommend one. I would definitely NOT wait 6 weeks. Addison’s is primary adrenal insufficiency. As far as tests–there is a long acting test and a short acting ACTH test–I’m not sure if there is any other kind.

      Have you connected to our Facebook page, Parental Support for Adrenal Insufficient Children? There is a wealth of information in that group of parents. Definitely avail yourself of their support and advice.

      Take care and let me know what you decide. I will pray for your son.

      • Jean

        Thank you for responding to my note. We are seeing an endocrinologist, she is the one that did the ACTH testing. Her leading theory is that he had a “subclinical” case of mono. Which means he contracted mono without presenting as if he had mono, and the mono it what caused the adrenal fatigue. The stress of starting his freshmen year of high school is resulting in more symptoms of fatigue and joint pain. My concern is that we need not wait with no care plan for him to repeat the ACTH test. I have sent a note to the endocrinologist with my concern. I am now trying to educate myself so I can be an effective advocate for my child. I appreciate any information and value all the voice of experience.
        Thank you for this site, you have brought comfort to others through your own loss.
        Diane

  19. Hello Jean,

    I saw the news piece on your daughter and AI. So sorry to hear you lost your daughter to this terrible disease. Like one of the readers above I have had a pituitary adenoma for 15 years. Unfortunately, I have had a number of spine surgeries over the last two years and have had to take a number of medications to control pain. Opioids can interfere with the hypopituitary axis and in men (and women) destroy testosterone, cortisol, and growth hormone productions. My Endocrinologists thinks this might have contributed to my recent diagnosis of secondary adrenal insufficiency and growth hormone deficiency. So now I have to figure out how to manage chronic pain and SAI, GH, and testosterone replacement. SAI due to medications is rarely diagnosed esp. with the number of Americans consuming prescription opioid pain medications. As you If I would have known about this side effect I would have never entertained using opioid pain medications with my pituitary adenoma and my physicians never explained the risk because it isn’t widely known. Take care!

    Best,
    TB

    • Wow, Todd. What a story. And amazing to me–again–how insidious adrenal insufficiency can be, showing up in the most obscure ways. Thank you for sharing, and thank you for your kind words about Annie. I do pray that you are doing well, and that you are able to manage all of these complicated issues. Thanks again for sharing your story. Tell it to everyone–often. People need to be aware.

      Blessings to you,

      Jean

    • I’m so sorry. Your situation is not unusual, though many people don’t realize that a head injury can cause adrenal insufficiency. Thanks for sharing, and I pray for healing for you.

  20. Hello I am just now trying to figure out if I have adrenal insufficiency I can’t find one endo in my area that isn’t obsessed with diabetes Please recommend someone in SAN Antonio tx or Austin please help anyone

    • I’m sorry it took so long to respond. The Facebook Group, Addison’s Disease Support Group, recommends Dr. Sam Miller in San Antonio. I hope this helps! This is his clinic’s phone number: (210) 614-2700.

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