addison's affects about 120 million people in western countries, and from all of the medically based websites i've read, plus what my endos have told me, it looks like addison's affects somewhere between 1-5 people/million in the US. the UK is different.

just think of how special we are! ha.

xo, misa

thank you for the replies! I guess there are not so many of us out there. Grannydeb

Primary Addison's disease is very rare. It is rare enough that most medical people don't come across it and often forget what it is by the time they do. You do need to know a bit about it when you have it so you can educate people about it, especially if you end up in an ER or someting. You should wear a medic alert bracelet or necklace that says you have it and take hydrocortisone. It is definitely not something that people are familiar with in the lay world, though JFK had it.

These days there is probably a lot more adrenal insufficiency caused by people taking steroids for other conditions. If they take them long enough, they will develop adrenal insufficiency which acts pretty much like primary Addisons disease. There is also Secondary Addison's disease, which technically is not called Addison's disease, which is caused by a lack of ACTH from the pituitary. It all gets very complicated.

Vanyel

Thanks Vanyel for your reply! I'm still taking it all in about Addisons. I also have hysimoto hypothyriodism {sorry spelling} Know onw around here has ever heard of Addison's. Thats why I wondered how many people out there have it! I do have primary. Grannydeb

grannydeb,
Do they know what the cause of your Addison's is? Is it autoimmune? Or a growth? Any idea?

Vanyel

I do know that Addinson's is very rare and not too many people are aware of what it is. I come across this alot when I tell people that I have Addinson's. They either look at me like I have two heads; or ask the common question: What is Addinson's? I tell them what I was told when I was diagnosed back in '97; but it still doesn't seem to answer all their questions.
I hope this helps.

I am with you in the USA alot of people of people in the UK have it I was on another support group and they are all from UK, nice to chat with people from the USA..taylorsally

They aren't sure if my hashimoto hypothyroid had a big role in my Addison's or not. I've got depression to deal with too. Today my doctor ordered that I see a Phyc doctor next month. She says that with the addisob's she wants to cover all bases. I've had the depression for years and I don't feel its any worse. I'll go to the phyc but I sure don't like them. Anyone else have this trouble?Grannydeb

Vanyel: There where just a couple of things you said that should be clarified.

1) You stated: These days there is probably a lot more adrenal insufficiency caused by people taking steroids for other conditions. If they take them long enough, they will develop adrenal insufficiency which acts pretty much like primary Addisons disease.

Actually, anyone who takes cortisol longer than 7 days, who's body normally would produce cortisone, runs the risk of have an Addisonian crisis if they abruptly stop treatment.

And where as it is true that the crisis comes about because cortisol, in an otherwise healthy person, tricks the pituitary gland into not making ACTH, it is not long term like with Secondary Adrenal Insufficiency. A normal person's pituitary gland will kick back in and start making ACTH again.

2) You stated: There is also Secondary Addison's disease, which technically is not called Addison's disease.

If I stop taking cortisol, I will have an Addisonian crisis and I will died. My body can no longer make cortisone or ACTH...without intervention of drugs. Un-like a normal person, my pituitary gland will never kick in to save me. (Mostly because not all of it is there any more)

Truly, the only difference between that long-term Secondary Adrenal Insufficiency and Primary Adrenal Insufficiency is that my Adrenal glands are physically good, but chemically DOA.

3) You also imply that the long term Secondary Adrenal Insufficiency is more common than Primary Adrenal Insufficiency.

This is not the case. I am the contact for the Nebraska NADF fellowship group. The Nebraska group has six members that have Addison's Disease, including me. Five of those members have Primary Adrenal Insufficiency and only one, me, has that longer term Secondary Adrenal Insufficiency.

That means given the population of Nebraska (1,783,432 [2008 est.]) and the 5 people NADF knows of in Nebraska that have Primary Adrenal Insufficiency, the rarity of Primary Adrenal Insufficiency in Nebraska can be est at 2.8035832 10^-6 in 2008.

Given the population of Nebraska (1,783,432 [2008 est.]) and the 1 person NADF knows of in Nebraska that has that longer-term Secondary Adrenal Insufficiency, the rarity of Secondary Adrenal Insufficiency in Nebraska can be est at 5.60716641 10^-7 in 2008, which is 4.99999999 10^-14 times more rare than Primary Adrenal Insufficiency.

Where I can admit 4.99999999 10^-14 times more is a very small number, it seems to be enough to have this fundamental misunderstanding of what Secondary Adrenal Insufficiency actually is spend across the internet. It is longer term, in fact, longer term and deadly.

I well be posting this on my site at http://www.addisoniansofnebraska.com/, because I think this is something that should be in more than one place.

AON,
Your information is a bit limited. Steroids are used for many problems, and most people can tolerate up to 10 days of steroids without much problem. Most physicians will use a tapering dose pack for short term treatment regardless, to prevent any kind of crisis. Abrupt withdrawal of long term steroid use will result in a crisis, but does not necessarily mean the adrenal glands are not functioning. Most people will get return of function over time.
Primary Addison's disease is defined as destruction or dysfunction of the adrenal cortex itself, and the most common cause in the US is auto immune. It results in a total lack of cortisol, aldosterone, and adrenal androgens. Secondary adrenal insufficiency (AI) is due to a lack of ACTH from the pituitary or from suppression of the HPA (hypothalmic pituitary adrenal) axis by the use of long term steroids (some references call this suppression tertiary adrenal insufficiency). THis results in a lack of cortisol, but usually does not affect the aldosterone or adrenal androgens. In secondary AI, there is really nothing basically wrong with the adrenal glands and they have the potential to work again.
Primary Addison's disease is permanent and irreversible. Secondary AI, once it becomes chronic, usually requires long term treatment exactly like Addison's disease. It is a catch 22. You have to have cortisol, so you have to continue taking steroids - but continuing to take steroids will prevent the adrenals from recovering. Thus you require long term treatment.
Primary Addison's disease is quite rare. I can't speak to statistics in Nebraska, nor would i expect that everyone with Adrenal Insufficiency is in whatever data you are looking at, but most cases of Adrenal Insufficiency are the result of people taking long term steroids and are thus secondary (or tertiary depending on your reference).
Both primary Addison's and secondary adrenal insufficiency require long term treatment, can result in adrenal crisis without medication, and are equally serious. I never implied otherwise.

Vanyel

I definitly have addisons the primary. I was told my adrenals are not working. They don't produce any more. I had 2 more doctors appointments today. I'm anemic and they want to rule out other problems so I'm scheduled for upper GI and colonoscopy in April. The GI doctor is betting the anemia is from my addisons. They jusat want to make sure. My panic attacks and depression are worse. I can't handle any real stress right now with out going into panic. Things are not so well right now. My weight is up of course. I've got diasapam just to sleep. Alprazalam for the panic attacks. I feel a mess and see no end in sight right now. Every night my son and husband fuss over the darn tv and I can't handle the stress of it! I almost told my doctor today to put me back in the hospital its less stress! I'm just a mess! Grannydeb

Ok, I agree with you up to the point where you said:
In secondary AI, there is really nothing basically wrong with the adrenal glands and they have the potential to work again.

False: Without ACTH the adrenal glands will never make cortisol again. Which is the case with secondary AI.

You said: Primary Addison's disease is permanent and irreversible.

Secondary Addison's disease is also permanent and irreversible. It is cause by permanent damage to the pituitary gland.

You said: You have to have cortisol, so you have to continue taking steroids - but continuing to take steroids will prevent the adrenals from recovering.

This one is a question of logic: Cortisone is produced in the adrenal glands, so why would a person with secondary AI need to take Cortisol (which is the cortisone replacement) for long-term of the body could make it without a drug?

The answer is there bodies can't make it. And the reason is actually a term you misused, the hypothalmic pituitary adrenal axis.

Hypothalmic pituitary adrenal axis refers to the fact that during stress the hypothalamus releases CRH, which cause the pituitary gland to release ACTH, which causes the adrenal glands to release Cortisone.

I actually just did a post on this at my site, which is cited:
http://addisoniansofnebraska.com/content/tertiay-adrenal-insufficiency

If the body does not produce cortisone because of the adrenals, it is called Primary AI.

If the body does not produce cortisone because of the pituitary, it is called Secondary AI.

And if the body does not produce cortisone because of the hypothalamus, it is called tertiary AI.

You said: I can't speak to statistics in Nebraska, nor would i expect that everyone with Adrenal Insufficiency is in whatever data you are looking at...

This is true there is at least 1 more person with Primary AI from this Site that was not included in my data because he or she is not an NADF member.

You said: but most cases of Adrenal Insufficiency are the result of people taking long term steroids and are thus secondary (or tertiary depending on your reference).

Find me any data, any where that supports this. I dare you. The fact is that there isn't any. And that is why I am so mad. This rumor has been spread from site to site with out any one questioning it.

The fact is that going off cortisol without tapering causes an Addisonian Crisis. The reason is that when the body is given extra cortisol in treatment, the extra cortisone that builds up in the body triggers the hypothalamus and pituitary to stop releasing CRH and ACTH. This is why people with Cushing's don't get the tan.

The issue is that the body needs time to start making CRH and ACTH after being inactive. So when a person goings off cortisol without tapering, the body is not making cortisone, and their not taking cortisol (the replacement). Although, the body still needs more cortisone then they have (given the reason they were taking cortisol in the first place). And so what happens when you do not have enough cortisone and your body needs more? An Addisonian Crisis.

In the case above, it is not cause by the pituitary not making ACTH; but, by the fact that they stopped using cortisol when their body still needed it.

*****
Again, I am posting this to my site at: http://addisoniansofnebraska.com/content/secondary-adrenal-insufficiency-myths-and-misinformation-part-2

AON,
While some of your information is correct, you get stuck on semantics and confuse some concepts.
For instance, adrenal insufficiency caused by excess use of steroids is potentially reversible and often labelled as secondary AI. Patients with pituitary problems leading to no ACTH production still have adrenal glands that can respond to being given exogenous ACTH. The potential for them to work is there. Unlike primary Addison's disease in which the adrenal glands are incapable of producing cortisol.
The HPA axis is simply the name given to the group of glands and their feedback mechanisms to control the secretion of adrenal hormones. It does not refer to any specific function.
Both primary and secondary, and tertiary if you use that definition, are required to take cortisol, and anyone anywhere who abruptly stops taking glucocorticoids after being on them for any length of time can potentially have an adrenal crisis. I never said otherwise.
Cushing's disease is the over production of cortisol and has nothing to do with Addison's tan. The 'tan' that some patients with Addison's get is caused by excessive ACTH production which the body makes in an effort to produce cortisol - which the adrenal glands are not making. The ACTH affects the melanocytes in the skin and causes increases in pigmentation.
I am not going to look up statistics at this point. Refer to any medical texts or journal articles on adrenal insufficieny - they state that the most common cause of secondary (or if you prefer, tertiary) Adrenal insufficiency is taking steroids for long periods for other conditions.
While all this academic discussion is interesting, I think what is more important for the group is how we each deal with our diagnoses, our experiences that we can share with understanding among others with the same or similar problems. Squabbling over semantics really serves no purpose. Endocrinology is very complicated and difficult to wade through even for the most educated people. I generally try to keep explanation as simple as I can to help people understand whatever questions they have at the moment.

Vanyel

I believe it’s called secondary if your adrenal glands fail to function due to cancerous tumors.