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
*I have posted this here as well as my journal in hopes that it may be happened upon via the magic search engines!*
Isolated Idiopathic Acth Deficiency is a very rare condition; one of which I've researched extensively but have found few that personally have a grasp of it. I have compiled this post in hopes that I may be blessed with input from others who have any knowledge or experience with this rare (and most life-threatening) form of Hypopituitarism. It has gravely affected my life, and although I seek to maintain an optimistic outlook, the dark side seems to always resurface. ((lol))
In my particular case, I have been graced with the illustrious Secondary Adrenal Insufficiency diagnosis. My cortisol & ACTH values were the sole levels found to be quite low, thus the conclusion of Hypopituitarism rooting from an ACTH deficiency. For this i was prescribed 25mg HC daily. I am slated to return to OHSU this summer and undergo re-evaluation via a comprehensive blood lab and a 2nd MRI. The initial MRI revealed an inactive micro-adenoma on my pituitary, and an area of ischemia within the right periatrial white matter.
IIAD nearly always results from previous radiation therapies or tumor extractions; neither apply to my case. Adenomas of the pituitary are surprisingly prevalent worldwide, however our rare diseases are quite the opposite. So I'm left to wonder what exactly is causing my condition. I plan to request a CRH test in order to evaluate my Hypothalamus and see if the cause could be Tertiary.
All through my life I've been exceptionally active and athletic. Beginning with my first Adrenal Crisis towards the end of high school, my tolerance for exercising and working has decreased significantly. My friends and family see my athletic build and don't understand how I could possibly be sick; why I am distant, foggy, and often downright melancholy. I was at the top of my class at the end of high school, I now struggle through redundant material and have had to leave the University once due to an Adrenal Crisis. I have been fired from multiple long-term jobs not because of a failure to perform, but because I am constantly pushing myself through the 8 hours, sporting smiles that are merely manufactured and a largely artificial upbeat attitude :P
Thank you kindly for reading and I look forward to ANY & ALL input.
Best regards,
~Sun~
Isolated Idiopathic Acth Deficiency is a very rare condition; one of which I've researched extensively but have found few that personally have a grasp of it. I have compiled this post in hopes that I may be blessed with input from others who have any knowledge or experience with this rare (and most life-threatening) form of Hypopituitarism. It has gravely affected my life, and although I seek to maintain an optimistic outlook, the dark side seems to always resurface. ((lol))
In my particular case, I have been graced with the illustrious Secondary Adrenal Insufficiency diagnosis. My cortisol & ACTH values were the sole levels found to be quite low, thus the conclusion of Hypopituitarism rooting from an ACTH deficiency. For this i was prescribed 25mg HC daily. I am slated to return to OHSU this summer and undergo re-evaluation via a comprehensive blood lab and a 2nd MRI. The initial MRI revealed an inactive micro-adenoma on my pituitary, and an area of ischemia within the right periatrial white matter.
IIAD nearly always results from previous radiation therapies or tumor extractions; neither apply to my case. Adenomas of the pituitary are surprisingly prevalent worldwide, however our rare diseases are quite the opposite. So I'm left to wonder what exactly is causing my condition. I plan to request a CRH test in order to evaluate my Hypothalamus and see if the cause could be Tertiary.
All through my life I've been exceptionally active and athletic. Beginning with my first Adrenal Crisis towards the end of high school, my tolerance for exercising and working has decreased significantly. My friends and family see my athletic build and don't understand how I could possibly be sick; why I am distant, foggy, and often downright melancholy. I was at the top of my class at the end of high school, I now struggle through redundant material and have had to leave the University once due to an Adrenal Crisis. I have been fired from multiple long-term jobs not because of a failure to perform, but because I am constantly pushing myself through the 8 hours, sporting smiles that are merely manufactured and a largely artificial upbeat attitude :P
Thank you kindly for reading and I look forward to ANY & ALL input.
Best regards,
~Sun~
I think it's critical you find a great endo you can work with to find the right balance. It's a perpetual exercise in trial, error and experience, but you have to pay attention to what works and what doesn't so you can work with your doc to find the right balance. I enjoy my good days immensly and try to have the patience to recover quickly when I don't feel well. Of course I'm blessed to have a very supportive husband who helps when I don't feel well.
Have you tried contacting NORD (National organization for Rare Diseases)?
I've experienced several instances of adrenal crisis, but after the last one--which I was hospitalized for in February 2010--I feel that I just haven't bounced back. My endocrinologist has looked for anything that may have sent me into crisis, but it looks like it was nothing more than dehydration.
I'm currently on 30mg HC/day in dose of 10mg/10mg/5mg/5mg. My endo considers this to be at the higher level of a safe maintenance dosage, but I still don't feel well. I have poor endurance when exercising, I experience a lot of lightheadedness and dizziness throughout the day, and I feel like I'm constantly "low:" moody, fatigued, fighting off muscle cramps.
I search in areas that support Addison's Disease, because it's the closest resource I can find, as I'm sure you know. Idiopathic Isolated ACTH Deficiency isn't something that turns up many search results.
I can sympathize with your experience of having to leave school due to this illness-- I did the same thing. I'd like to know if you've had any luck finding exercise tips/advice/warnings-- I really want to get back on my treadmill!
Thanks for your post, and best wishes :-)
Initially I was wrongfully diagnosed with hypothyroidism and was prescribed with medications for the thyroid and was ok but then I moved to other country and couldn't refill the medicines. The doctors did not find anything wrong with my blood tests. I felt I was dying although I physically looked fine, nobody believed me.
Until one great endocrinologist was able to find that I had a pituitary tumour but she wanted to treat it instead of removing it. Since then I was prescribed Cortisol but for some reason I did not respond well to it and I asked my doctor to change the medication because I still did not have energy even to walk. She then changed the medication to Dexamethasone and I felt better. However, couldn't function fully. I had weakness and was absent-minded most of the time so she also put me on Eltroxin to help my thyroid that was also affected and since then I am better. I gained weight but I can function now.
However, when I am under stress or I have to do more activities than usual or I am exposed to an extreme weather I need to increase a bit my medication for a couple of days or so and then I go back to my regular dose. My doctor knows about it and she is ok with it. At the beginning I had to go to emergency when I felt sick and the doctors didn't know what to do because they are not familiar with ACTH deficiency disease.
Please keep the spirits up and don't give up. Ask your endocrinologist for options, ask the pharmacist too. Hope you feel better soon.
I am glad to have another source of communication, that is all of you. So thanks and I will return to read more. I will follow up with my docs about difference between Addison's (which they are not certain about.. and looking into any problems with this new term...Hypopituitarism....my baseline...before they gave me the ACTH in hospital was 1 point something...and jumped to 2.6 after the proper amount of tiime and ACTH were administered; second test...baseline was 2.4 (all while fasting and in the early morning hours) or close to that and jumped to 6. something after the ACTH; also have to take the ot6her med to supplement the mineral components the adrenal glands are not producing....
Now I'm in nursing school and just trying to keep up is really difficult (I already have a bachelor's degree and had a full scholarship to college, so I was always a good student)...walking up the stairs in our home is always a struggle. Finally, a month ago, I got tired of my endo telling me to be patient with my fatigue and weight and other issues...I went to see an integrative MD. He tested my other hormones, and it turns out that since my last round of blood tests, in 2009, I'm now almost completely deficient in testosterone, progesterone, DHEA, and my thyroid is low as well. I've started on compounded creams and prescriptions to help boost those levels. I'm already feeling better. I know it's a controversial subject, but at this point, I'm desperate to feel well enough to pursue my dreams, be a great wife, a good employee, and someday, a mom. Right now, I am at home too tired to do anything but study, and even that is difficult.
I'd love to keep hearing updates...and suggest that everyone get their other hormones checked...once one is out of balance, the others may follow. Good luck, everyone!
I love integrative MDs. My doc is an integrative doc, and though we have been stuck having to rely largely on western medicine for my issues, at least he was able to find the problem by testing all my hormone levels. When I went to him I was trying to taper of prednisone they had put me on for arthritis, was horrendously fatigued and having pain issues with the arthritis. He tested all my hormones and discovered my complete lack of cortisol, along with a complete lack of DHEA, progesterone (yes men have it too), low vitamin D. My thyroid was completely wacky. He has done more for me than all the specialists I've seen. I have to replace all these hormones, and testosterone. I wish I could say it made me feel all better, but it hasn't. I still struggle with horrible fatigue and arthritis. We're working on it though. I love integrative MDs!!!
Vanyel