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Addison's Disease Message Board


Addison's Disease Board Index


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
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.
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 :)
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
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:





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