Do you have Adrenal Disease?

The adrenals are such tiny little things and so is the pituitary gland….so why are they such a BIG problem?  I often joke and say that my pituitary went on vacation and never came back, so my adrenals don’t know what to do. 

I was diagnosed with Isolated ACTH deficiency in 2001, and haven’t been well since.  ACTH is a hormone made by the pituitary gland that signals the adrenals to produce cortisol.  But, like I said my pituitary gland is on vacation.  In my case, there is nothing that points to why or how I developed this disease. 

I am always interested in how other people were diagnosed and how others cope with their condition.  Although my doctor is well-informed, and treats a handful of patients with some type of adrenal disease, I understand I am lucky.  I have heard horror stories from other people about their doctors who just don’t get it.  So, what can you do to make sure YOU understand what is going on with your body? 

  • Support groups and health bloggers are a great source for information and understanding
  • Understand your treatment and meds with the help of your physician and your pharmacist (I have found pharmacists to be very willing to talk and answer questions that some doctors don’t want to take the time to do)
  • Ask Tell your doctor what you want, and don’t take no for an answer, I regularly ask to have my DHEA level checked because I want to know.  She doesn’t necessarily care about it. 
  • Learn to listen to your body, it often will tell you what it wants/needs
  • Be prepared for anything.  Something you might think is small or insignificant can land you in the ER
  • Always keep a list of your medications with you, if you are ill it is hard to remember everything
  • Educate your family so they can advocate for you in case you can’t
  • If needed, make sure you have an emergency injection available to you at all times
  • Wear a medical alert bracelet or some type of ID that will alert emergency personnel of your condition

If you have important hints to share, please do.  Below, I am sharing some of the most important links and interesting people that I have found to learn more about various adrenal diseases.

Addison Village – Here you will find a wonderful group of people who are knowledgable and willing to share all their ups and downs with anyone who asks.  I learned more from this group than any other website

Finding Lana – A great blog written by a woman with Addison’s Disease,  lots of information on her blog!

Simply Suzanna -Suzanna always has something cheerful to say, and her blog is pretty to look at too!

Hypogal – Lisa, who has Sheehan’s Syndrome shares her story with her readers on this wonderful blog.

Addison Disease Facts – A Blog written by my friend Jo, who also helps people through her website Addison Village (mentioned above)

This has nothing to do with Addison’s Disease….I just like it!

http://www.youtube.com/watch?v=qnUZ-Uw05kg&feature=related

 

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14 thoughts on “Do you have Adrenal Disease?

  1. i just found your blog and I am so glad. I have to check out addison’s village. I was diagnosed with Addison’s disease in 1973 and have been dealing, usually quite well, with the ups and downs. Hand in there.

  2. I am trying to catch up with all the blogs on my list, I’m sure there are more for me to add. It warms my heart to see other people opening up about having Addison’s/Adrenal Insufficiency. I have to say that people SHOULD go onto Addison’s Village because it provides a wealth of information, support and VAST DIRECTIONS to go for specific issues. It’s also a place where you can let your hair down, so to speak, and just be honest about the gravity of living with this disease. If you feel like putting on a happy face for the day, you can do it…If you feel like being brutally honest with your struggle that doesn’t feel too happy at the moment, you can do it — AND get support, either way. I have less time to be on-line lately, but when I am able to sit and catch up with my reading, your blog is always on my priority list. Thanks for keeping on keeping on.

    Lana

    • Lana, Thanks for the kind words….I love the Gals at Addison Village because they educated me on this confusing and frustrating disease. It is a small group, but they are all so knowledgeable and so eager to help. Thanks for being there for all of us Addies…I have learned so much from you too!

  3. Sorry for the double postings…I was using my ipad and didn’t realize I wasn’t logged in. Then I forgot my password…finally found it!

    Jo

  4. Thanks , Mo. I have recieved so much support from my online friends. We learn from each other and you can never know too much in order to be as healthy as possible. Good post, Mo.

    Jo

  5. Thankfully I don’t have this and I’d never even heard of it before meeting you. I was reading about it and I read that most often people aren’t even diagnosed until they have a life-threatening experience so I’m wondering why screening for this (and other conditions that might not be well known) isn’t part of an annual physical? Last year I wanted to be tested for Celiac Disease and my doctor did it, but not until after he kept telling me I didn’t have it.

    • I have encountered many doctors that know nothing about this illness. It is a rare condition and it isn’t included in annual checkups. When someone goes to the doctor (especially a middle aged woman) with symptoms of extreme and debilitating fatigue, they are often dismissed by the doctor who tells them they are depressed or going through menopause. I landed in the hospital before I was finally diagnosed. Of all doctors to diagnose me, it was my gastroenterologist! All the doctors kept blaming my symptoms on my Crohn’s Disease, but he dug deeper and figured it out. I have a good doctor now who listens and understands…can’t ask for more than that.
      mo

  6. Thanks for the above mentions of Addisons Village and Addsion’s Disease Facts…I don’t know where I would be without the support of my online friends. I learned so much when I knew so little! I first met my friend, Mo, on an online Addison’s forum several years ago.

    Good article and sound advice, Mo. Well done!
    Jo

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