Just Diagnosed with Addison's

[chris1021]

Thanks MG! You're hilarious!
Chris

[lesley75]

Hi Chris,
Welcome to Addison's Disease. I was diagnosed 10 years ago and would like to share some basics:
You should feel the benefits of the cortisol supplementation right away. It's a pretty fast acting drug and the dose we get as Addison's patients is a metabolic amount, meaning it should replace/mimic the amount a healthy adrenal gland would produce. That being said, maybe your dose isn't strong enough for your metabolic needs? Or maybe you need to spread your dose throughout the day- some in the morning when natural cortisol levels should be at their highest, and some in the afternoon to get you through the rest of the day- ask your MD what they recommend. Or perhaps you need to ask your endo to consider adding the mineralocortocoid drug Florinef to your treatment plan. Florinef will help better regulate your sodium/potassium levels which can ease the fatigue, elevate low blood pressure, etc. Don't know how this would interact with your thyroid condition & meds, but it's worth asking.

Most importantly is to educate yourself, especially for emergency situations. Illness & bodily stress strains the adrenal patient differently, we have to factor in and manage Addison's in tandem with every sinus infection, fever, broken bone, etc. Addison's is a very rare condition. Many doctors see it only a few times in a medical career and you will often need to fill them in on your special needs, remind them that you need stress dose steroids. Always disclose your Addison's diagnosis in every medical situation, to your dentist before any procedures, etc.

And if you aren't already for your other conditions, register with Medic Alert and wear your bracelet! Hope this helps!

[chris1021]

Hi Lesley,
Thank you for your nice post....nice to meet you! Some of your suggestions to me have been given to me over the years, and some just over the weekend by some friends...
7 Years ago, long before I was diagnosed, the doctors (many that I saw to get help and got nowhere) said that I had Neurally Mediated Postural Hypotension. My BP would drop 30-50 points when standing. NOBODY could tell me WHY it was dropping. All they would do is try to treat the symptoms... I went from doctor to doctor, each one trying to fix me..... Some had me taking Florinef, wearing compression stockings, increasing my salt intake, and taking beta blockers. Nothing helped me. I still have all of the same symptoms. When I stand up, or sit for long periods of time my legs and feet turn purple, I'm always dizzy or "half a bubble off center" and just feel wiped out everyday...after seeing a host of doctors I starting believing that I was losing my mind! I ended up seing a cardiologist for 2.5 years, and he had me on beta blockers, which made me feel worse....*sigh*....I've suffered and struggled with it all for years to no avail....Many of them were close to figuring things out....but they didn't think they needed to test me for addisons....."it's so rare!" ARGH!!!!! Also, EVERYONE says "you look so great!" It has been a nightmare!
So, taking Florinef with Cortisol would be better? To be honest, I am so freaked out taking any meds because I've been on so many through the years, and none have helped me. So my faith in them is pretty low. Is there a specific test that would indicate that Florinef is needed?
Also, getting a medic alert bracelet is something a friend suggested to me on Saturday. So I will get one for sure.
My doc is SUPPOSED to be back in the office on Thursday so hopefully I'll be able to get in to see him.
Here is another dopus question....what is the difference between adrenal insufficiency and addisons? Or are they the same?
Thanks again for your help!
Chris

[mkgbrook]

From the definition of Addison's it is primary adrenal insufficiency an adrenal gland that has approximately 90% disfunction in the adrenal cortex. 70% of Addisonian's are autoimmune attack inspired and 50% have or will develope polyendocrine deficiency syndrome.

Hey, I meet the criteria for autoimmune polyendocrine deficiency syndrome. Ahh I am a rare oddity. Hashimoto's, Graves Disease, hypothyroid with periods of hyperthyroid, primary adrenal insufficiency, what is next? Don't you just love surprises! Now being a rarity, does that make me a collector's item or reject? Gotta laugh at excrement when it hits the fan... it makes such a wide spread splatter pattern... *Salutes sharply* Here's to trying and stay behind the fan!

MG

[chris1021]

MG, thank you.
My gosh! Are you having fun yet??? Is THIS the fun part?? Well, I know one thing fer sure man, you HAVE to keep your sense of humor through all of this....I'm with you, it's better to behind the fan than in front of it ;-)
It seems to me (through reading posts) that there are many common threads that run through everyone with this disease....in addition to Addisons some have thryroid disease, hypoglycemia, PCOS, and other fun stuff....*sigh*......I'm sick of being sick! Will see the doc on Thursday to discuss my meds not working....until later, thanks again.
Chris