Addisions Facts and how to live with it

[donnab]

I am looking for basic facts, where to learn more and how to function as normally as possible once you have Addisions.

I had my left adrenal gland removed 3 years ago due to a very large pheochromocytoma. In 2 months I am having surgery on the remaining adrenal gland to remove 2 more pheo's. I will be having a partial adrenalectomy, but because of the placement of the 2 tumors they are not sure if I'll retain function. Because it's somewhat unique, they cannot even guess as to my chances of functioning. They will only be able to leave 1 blood supply to it and only part of 1 lobe will be left. I am very much aware that I may end up with no adrenal function at all once it's done.

I have been reading here to try and educate myself as much as possible. When this is done, if I do have addisions I need to know how to deal with it and be able to direct my doctor on how I need to deal with it. Even though Addisions is more common that pheo's, I am assuming it's still rare enough that my doctor is likely to not know all there is that I need to know to lead as healthy a life as possible afterwards.

I see that people have posted that Vitamin C, Vitamin D and DHEA should be added to the diet. I'd like to know how much of each of these you take each day. Also are there any other supplements that should be added to my diet.

I read somewhere to avoid foods that are high in potassium as they may adversly affect someone with adrenal insufficiency.

Any suggestions on where I can go to learn more about this?

Another question I have just for curiosities sake is: If I have Addisions because my adrenal glands have been removed, is this primary or secondary? If my adrenals are gone or what's left doesn't function because a disease caused them to be removed is that still considered secondary?

[sonyamom]

Try [url]www.nadf.us[/url]. This is the site for the National adrenal disease foundation. It has several links to other sites and is very informative.

[rumpled]

Hello!
I have no adrenal glands at all. I had them both removed in March 2006. I know of many that live without adrenal glands. I had mine removed as I had a pituitary tumor and had surgery. Tumor grew back and was dectectible via labs but not on the scans so decided my best option was to remove the adrenals.
Basically you have to take your hydorcortisone daily or whatever your endo gives you but most take cortef as it is most like your body produces. Most take florinef in various doses. Some of us take half a pill - I am among those that take the most in taking .2. I am panhypopituitary so I am not the best example of "living well" as my body is wrecked from the Cushing's and taking forever to get help but there have been some that have done well. I never made it back to work after my adrenals were out but I know others that have done pretty well.
On some addison sites and boards there are others that have no adrenals and do well. You have to make sure you don't forget your meds, stay hydrated, have salt, and if you were strong before, likely you will make a good recovery.
There is also an addison disease handbook out there that is handy.
Your doc should test you for DHEA sulfate so that you know how much to take. It is a precurser to testosterone and estrogen so you don't want to take too much and it really really depends on you individual hormonal make-up. I would also recommend calcium, D, B12, ferratin tests as well.
Potassium is to be avoided, for me, when you are ill - as your body will store it - an adrenal crisis happens when sodium drops and potassium rises in most people but not all.
I have no idea about the primary or secondary!
Good luck!

[cloud2]

Donnab, if it pushes you to Addison's, it would be primary. From a JAMA page, "Primary AI is relatively rare but develops in patients who have greater than 90% destruction or replacement of the adrenal glands with inflammation, tumor, infection, or hemorrhage." There is also secondary and tertiary, which deal with ACTH and HPA axis dysfunction, respectively.

This healthboard and reputable medical websites are a Godsend for information on this. Imagine 15 years ago when you had to find a knowlegable, reputable and skillful doctor, just the right book.

Hoping the surgery goes perfectly for you. No surgery is minor or routine if it is yours!