Chris,
Here is a short summary of my history with Addisons.
about 3 years ago I had a addisons crisis, twice, before they figured out what was wrong with me. I went on steroids for a couple of years, did the massive wait gain, had the facial hair, the moon face and all and gained like 30 pounds. Finally leveled off but really didn't loose the wait and became more stable with corisol levels. Then about a year ago I blew up like a ballon out of he blue. All of a sudden I felt like I had taken tons of steroid again but I had not uped my dosage, high blood pressure, heart palpatations, red faced, hot flashes ect. Got tested for lupus, cushings, and nothing so he started taking me slowly off the steroid and it began to help. Went and got ACTH test and it showed my adrenals were begining to function again. Finally went off the steroid and all was Ok for about 6 months then came down with phenmonia (sP) was in the hospital for 3 months and adrenals quit again. Got out, was on 5 mg. cortef and then taped off. Last test in November showed low cortisol levels, low testosteron levels, and low t-3 and hight t-4 (if i remember correctly) any way they said I was hypo. Felt ok untill about a month ago and all went to pot. Moon face again, weight gain, hair stuff, tired, ect. Went on Armour, have been on it for 2 weeks and still feel horrible. But symptoms began before I went on medication. I am seeing an enchronologist but he is total medicatin freak so I have also been seeing a more homopathic dr. I have no idea which way to go or what test to do. My body is so messed up and I just don't know what to do. I go in today to do more blood work any suggestions? that is the story and where I'm at.
Thanks

I told you my body is so screwed up it doesn't know which way to go. Thanks for the help. It might help you to let you know I'm HIV as well. Sorry didn't really want to say. Things are under control in that area though. Have been for 16 years. Just a little note on myself: I've had several things happen to me (with my body) that I should have died from and have recovered from. The doctors don't have any explination and have no answers for me. I have responded really well to unconventional methods of healing. I just call myself blessed. Thanks for your help

Hi!

You really sound like you have something called Cyclical Cushing's disease. It is thought the cyclical patients are in earlier stages of the disease and only episodically release excess cortisol. But some people stay cyclical forever.

I would recommend that you Google "Cushing's disease" and look at some of the support groups that come up...there are two or three that are really amazing and very informative. Read up...my guess is you will see yourself in the stories. The number one piece of advice I will give you is DO NOT GIVE UP if the initial docs you see don't help you...they just aren't really educated about this in school. That is why the best solution is to cut to the chase and travel (if necessary) to see the best person you can find. There are lists of doctors people have had good luck with on the support sights. Stick with either a large pituitary center or someone whose subspecialty is truly just pituitary diseases (they are few and far between). See who the boards recommend (by name).

Good Luck to you,
Sadie

Chris, gosh thanks everyone for all the info. I went today to have my blood work done. I had them check me for cushing as well as testing out my thyroid again. I had an antibody test on my thyroid in January and it came back ok. I live in Houston and have a really good enchronlogist at the Medical Center. He is one of the best. I am seeing him next Thursday. What confuses me though is how they can say I have addisons for 2 years and put me on steroids and then all of a sudden I have cushings? Is that even possible. Has anyone ever heard of going from one extreme to the other? I am doing alot of holistic things and I seem to repsond really well to that but I am also seeing my specialist at the Mecdical Center as well. I have several issues and all of them come with their own doctor. I definaly believe in modern medicine but I also believe in never giving up and finiding unconventional medical ways makes me feel like at least I am still in the fight. Thanks so much for all the support. I will definatly keep you updated when my blood work comes back. I will go and check out cushings web sites and read up on that. I just hope they can do something for me. I feel like sometimes I am totally going crazy. If anyone has any adivse I would love to hear from you. I'll keep everyone posted
Thanks for your support.

chris, Well, once again they can write me up in the medical jounals of the unexplainable. God, would I love just a normal illness to happen to me. I always get things no one can explain, anyway I'll keep you posted thanks again.

Hiya!

I'm glad to hear you are revisiting your doctors for more work-up. Cyclical Cushing's is exactly what you describe...going from one extreme to another. With this type of Cushing's there is a benign tumor (adenoma) that secretes either excess ACTH (pituitary stimulus for cortisol release) or excess cortisol (directly from the adrenal gland) BUT only episodically. During the times you make extra cortisol, you have symptoms of Cushing's. When it suddenly shuts off, you have symptoms (and test positively for) Addison's. The cycles can be in days, weeks, months or even years, for some people. It is believed (most widely) to be an early form of Cushing's--it's just that many don't get a diagnosis until so late in the game that they are already full-blown (without episodes anymore). It is well documented is the newer endocrine textbooks and research papers. It is harder to keep the doctors updated, though!! Some good materials can be found by searching PubMed with the search terms "cyclical cushing's" or "episodic cushing's"

The challenge of this particular form of Cushing's is that catching the hormonal changes is unpredictable. Just because you have symptoms on any given day of Cushing's doesn't mean that blood or urine testing will catch the change...it can lag behind or ahead of testing. Since you can't realistically do 24 hour urine collections everyday-it can be pretty frustrating. That's why you really need a doctor who has a strong index of suspicion so they will be aggressive in having you do multiple tests.

What is interesting is that if you read some of the Cushing's Boards, many of the people (but of course not all of them)with a diagnosis and successful surgical treatment of their cyclical Cushing's have a history of previous steroid use-either oral or even inhalers for asthma. Most report that they were symptomatic BEFORE any contact with steroids but things were really exacerbated after steroid use. It makes me wonder if the process of coming off of steroids really stimulates ACTH release as it should to turn the adrenal back on after suppression, but then it turns on an already present tumor that then has trouble turning off again. Pathology of the tumors often shows a true adenoma, while others show hyperplasia (overactivity) of ACTH secreting tumors.

I know about this because my husband has been suffering this nightmare for well over two years. What I have learned in the last few years is that endocrinology isn't as straightforward or cut and dry as we would like. There are many gradations of disease that just aren't recognized yet and for which there is no easy answer.

Another thing I have wondered about is this: I don't see why, if Hashimoto's thyroiditis can result in transient overactivity of the thyroid as well as underactivity, that the adrenal glands couldn't periodically experience a similar pattern of behavior as they struggle to maintain a balance.

I hope that your doctors are motivated to help you find answers. Being stuck in the middle of a miserable biologic experiment with no end is really horrible. Good Luck,
Sadie :)

Hey sadie-mae,
Your are the first person I have heard that makes me feel like I'm not loosing my mind. So your saying that there is the "cyclinal cushings" that goes from one extreme to the oher? Because I was diagnosed for 3 years with addisons. I had 2 addisons crisis before they figured out the adreanals had stopped. Dr. told me the tests showed my adreanls were all shrunken up and did not work properly. I was on the steroid for 3 years. So I could have a tumor? Tell me what kind of test did your husbsad do? Do you know of a specifi test that I need to take to find this out. I just had my blood work done yesterday and they tested me for cushings. Won't find out he results until next week. But I did have the test while I am having all these symptoms. Its just that I have been in the hospital several times since my 2 addisons attacks occured and have had every test under the sun. cost me a fortune let me tell you but know one ever said anything about a tumor. Is there something specific that I need to ask for? God it feels good to know I'm not alone. Thanks for your input. Oh, can I find anything on line about the "cyclinal cushings"? I googled cushings but didn't find anything except regular cushings.

Hi Again,

Some of the best places to get info on this are the support sites. Try to Google the search terms "Cushing's/ help /support" and see what comes up. Get into the sites and look around-read up and share your story with others to see what ideas they may have.

As for testing, my husband had a basic evaluation of his pituitary function, including LH/FSH, IGF-1 (growth hormone), TSH, ACTH, prolactin and then the hormones they stimulate, including Testosterone (full panel including bioavailable levels), estradiol, thyroid (total T4, free T4, Free T3) and a 8am cortisol level. All of these tests are best done first thing in the morning after a 12 hour fast. Then to specifically look for Cushing's there are several tests to screen. 24 hour urine collections for free cortisol, 11pm salivary cortisol and 11pm serum (blood) cortisol. Often the first indication of Cushing's is loss of diurnal rhythm. Normally cortisol is highest in the morning and should be almost nonexistant late night. Cushies have higher late night cortisol (it's what keeps them from sleeping!). Other tests such as the low dose dexamethasone suppression test are ones that doctors often recommend first but they are rarely abnormal in EARLY Cushing's cases. If you do have this test and it is normal-it does NOT rule out the possibility of Cushing's. My husband has done many tests that have come back normal, as well as abnormal results. Depending on the details of your story, your doc may order an MRI of your pituitary (with contrast) to look for a tiny little tumor. Just because you have a tumor, does not mean you have the disease. As many as 10% of the general population have pituitary tumors (1mm-2mm in size) without ANY health issues. That's why the blood and urine tests are usually done first.

I have to admit that your history is quite unusual in that you were treated as an Addisonian with success for so long. Please be very careful in following your Addison's with your doctor-being off steroids can be life threatening as you know, if you do need them. I think Chris is right that you should also fully evaluate the possibility of thyroid disease-as it can go hand in hand with Addison's and do don't have to be positive for antibodies.

Good Luck,
Sadie

Oh wow, so much information. This is what I would like to know before I go see my encronologist next Thursday. I will have the test results from my blood work which I know they are testing me for the cushings and retesting my tyroid. What test should I request. I'm tired of just going in and feeling not in control. Have yo-yo back and forth for so long I want to get this addressed. I would like to have a list of test to be able to tell him I want to do so we can get down to the root of this problem. He works in tandum with my HIV dr (who by the way is one of the best in Houston) so that won't be a problem. I just want them to get me strait one way or the other. I feel like I am loosing my mind. I want to go back to work and once I get all this hormonal stuff taken care of I feel like I could be successful at it. Can anyone give me their thoughts on which test I should ask for?
Please help!!!!

Thanks guys for so much help. I don't know what I would do without the access to an internt. It has literly saved my life. I must say I have some of the best Dr's in Houston but in dealing with health issues for the last 16 years sometimes even the best dr's miss things. I have gotten alot of information from this site and others on what I should be looking for and feel much better about being in control. Chris i will post my blood work and test results when they come back and let you know what the doc says when I see him them on Wen and Thur. I just want to say thankyou to everyone. I really thought I was loosing my mind untill I found people that have the same symptoms as me. I know that being HIV has its own symptoms and makes things a little confusing to figure out what is going on sometimes. Some of my symptoms I have may be caused from my cocktail but not all of them. Again, just wanted to say thanks to everyone and will keep ya'll posted.

Best wishes and happy life :bouncing: