Addison's Disease

[Hope4LessPain]

Hi, I've had Addison's Disease or also known as Adrenal Insufficiency, since about 1992. Mine was brought on by a tumor removal on the pituitary gland. My Addison's is controlled with meds every 12 hrs, so I'm stable. Was wondering if anyone else has this, since its very uncommon. I find that most of the doctors and EMT's don't know what to do in a 'crisis' and I have to tell them... can be a life threatening situation if not treated in time and/or correctly.
So, was wondering how others handle this if they have it...

 

[Lavender1275]

I was diagnosed with primary Addison's in 2009 after 19+ months of illness and ignorance in the medical community. I too find that I have to educate the medical professionals in my area. I've had one Addisonian crisis and my husband had to tell the ER doc how to treat me. I'd love to live in the UK where this disease is more widely researched and known.

 

[seashale76]

I do know that JFK had Addison's Disease. I don't know why this is ignored as we do learn about it in nursing school, at least.

 

[peaceandquiet]

I was just browsing through the forum and this thread caught my eye - because my DOG was recently diagnosed with Addison's!

We adopted her less than a year before, she was about 7 or 8 years old, and just all of the sudden, she got very sick. (it turned out to be an Addisonian crisis). We were so fortunate that our vet figured it out quickly.

Ironically, our other dog is showing signs and symptoms of Cushing's (which I'm sure you are aware is basically the opposite of Addison's). She hasn't tested positive for it yet but the vet is convinced she is in the early pre-stages.

Anyway, I know second-hand now how terribly scary Addison's can be and I feel for you. I'm glad you have it under control! It must be very tough to have a "rare" disease that the medical community isn't very familiar with.

 

[gerbilwoman]

Glad it's under control. I have a small pituitary tumor. Haven't been feeling well lately and doctor thinks it's likely I have Addison's. I was tested in the past and there were no issues so I'm not sure. Waiting for the bloodwork.

 

[Ada Lovelace]

Is anyone who responded to this thread still active here?

I also have Addison's. I'm fortunate that my dad and stepmom are physicians because they were able to recognize symptoms and have me properly diagnosed early on.

 

[Mea_kākau]

I used to work as an RN. I don't any more. However the training paid off for me. My mother had Addison's Disease along with diabetes and hypothyroidism. I gave detailed info to my brothers who were closer to her. I told them to educate themselves about Addisonian Crises because they can occur and are serious and most ED of hospitals don't have a clue what's going on and how to treat it. My mother was diagnosed when only one doctor in all of the US knew about the disease. The year was 1967.

 

[Ada Lovelace]

I used to work as an RN. I don't any more. However the training paid off for me. My mother had Addison's Disease along with diabetes and hypothyroidism. I gave detailed info to my brothers who were closer to her. I told them to educate themselves about Addisonian Crises because they can occur and are serious and most ED of hospitals don't have a clue what's going on and how to treat it. My mother was diagnosed when only one doctor in all of the US knew about the disease. The year was 1967.

I wish JFK had been more open about having Addison's Disease so his prominence could have been utilized to raise awareness of it. Of course I understand that strategically it was advantageous to his political career to conceal it. I also respect the desire for privacy in regards to all health matters. It was an option afforded to him at that point in history before the advent of the internet; today political candidates would be skewered if they weren't transparent about a health condition, especially one that is potentially life-threatening.

It's still an intricate disease that many medical professionals are unaware of, but thankfully they can gain information about it far more rapidly now than in the past. That has helped significantly. I've had Addison's and other endocrine problems since I was a baby, and the incredible rarity of it has always made medical care a challenge. I'm still being treated by the same pediatric specialists as when I was a preschooler because so few others have expertise. I am grateful for the technology we have today, and how that has benefitted me. I've had instances where I'm in desperate need of medical care, and the EMTs or other medical staff have never heard of Addison's but are able to quickly gain knowledge for how to treat me because of my MedicAlert and the information on my iPhone and iWatch. My iWatch has an alert button that can be pushed for my parents and doctor to be called and texted my location, and for treatment information to be on the screen.

I doubt many eyes will ever find their way to this thread, but on the chance that someone might be reading and wanting to learn more I'll post a few links about pediatric adrenal insufficiency / Addison's:
Pediatric Adrenal Insufficiency (Addison Disease) Clinical Presentation: History, Physical Examination
default - Stanford Children's Health

Edit to add: 2019 update - the pumps for Addison's have improved dramatically since when this thread began!

 

[Weathering Storms]

I have Adrenal Fatigue Syndrome. My life has been so stressful for so long that I have been in a "flight or fight" mode constantly. My adrenal glands do not put out nearly as much adrenaline as it's supposed to.

I don't know if that's similar. I know in AFS, as you are able to get rid of stress, the adrenals will eventually start working properly again. I know in the case of Addison's disease, there is no recover, but only management.

What are the symptoms of Addison's, other than exhaustion?

 

[Woonkle]

I have adrenal insufficiency from almost 8 years of prednisone. I only found out about stress dosing and cortisone injections a few months ago. My endocrinologist isn't sure if my adrenals will start to work again after so long but she said they probably will. I suspect they still work since I've been in plenty of situations where I needed to stress dose or have an injection but we had no idea.