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Addison's Disease Message Board


Addison's Disease Board Index


Hi Grace!
I certainly know those symptoms! I have most of them. I was gaining weight like you for a while but now I have stabilized for a bit. I have the side pain. I think what you are describing is flank pain and many people with adrenal disease also have it. Unfortunately, it is yet another one of those symptoms that aren't in the textbooks, so doctors don't recognize or acknowledge it.

You said something that is a big clue to me...your doctor thinks that you have PCOS. Does that mean you have elevated Tesosterone levels? FSH/LH ratios out of balance? Do you also have low estrogen? Do you have insulin resistance or early diabetes? One thing that doctors don't seem to tell you is that PCOS doesn't directly make you have any of the symptoms you have (except infertility) unless you have out of control diabetes. It doesn't make you tired and unable to sleep, give you pain in your sides or any of the rest of it. It is a silent disease. BUT- there are many women with your symptoms, getting the PCOS story-that actually have something called Cushing's disease. Another tip off you have more than PCOS is the growth hormone deficiency. Something is wrong and your doctor isn't getting the big picture at all. That is sooooo frustrating.

The symptoms you are describing are usually one of two things. They are either growth hormone deficiency (which you already know you have) or it can also be Cushing's disease (which often comes WITH growth deficiency as a part of it). The two are difficult to tell apart. What I understand is that if you have skin problems (like more acne than you used to, red flushed cheeks, thin skin that you can see your blood vessels through, pink or purply stretch marks on your inner arms, legs, belly or breasts, sometimes inside of knees) those are quite specific to Cushing's. Sometimes it is so hard to know which is wrong and our doctor believes in trying a trial treatment with growth hormone. If you get better-well, there you have it. If not, then something else is wrong.

When I mention Cushing's, I am talking about a disease in which your body produces too much cortisol. I know you were just worked up for Addison's and your test came back lowish but that just about sums up how confusing Cushing's can be. In most cases, the disease is caused by a tiny benign tumor in the pituitary that puts out too much ACTH, which then stimulates too much cortisol. For others, it is because of a tumor in the adrenal gland itself making cortisol on its own. (For a few, it is a tumor elsewhere in the body that makes ACTH.) Those tumors will episodically make their hormones, especially in the early stages. So because it only sometimes makes hormones, you have different symptoms depending on what it is doing.

If the tumor is 'on' you will often feel better because cortisol makes you feel energetic and covers up pain (it also makes your immune system weak so you catch colds more). You may have worsening insomnia or irritability-like you've have 60 cups of double java. On the days the tumor is "off" everything shuts down suddenly and you may feel like you have been run over with a mack truck. Achy and sore, headaches, moody, loss of appetite, nausea, dizzy-everyone is different but those are when you feel like you have Addison's disease. If you test during an off time, then your tests may look like you have Addison's (which yours did).

They call this kind of cushing's early, mild or cyclical. The challenge is that there is no good test to definitively rule out the issue. You have to just keep collecting urine or saliva samples to measure the free cortisol in your body until you catch one that is high. That can takes months or even years-depending on when the tumor is on or off. Other things that help point that you are on the right track is your history (good days, bad days being part of it-I call it highs and lows), and if you have other evidence of pituitary damage (like low TSH and low IGF-1/growth hormone, low estrogen). Some people have these with Cushing's others do not. Those things will also come and go in many cases because they are mediated by the steroid levels in your body.

The challenge with early Cushing's is that you really need a doctor who gets the fact that the tumor turns on and off. For some reason, in spite of much clear cut documentation of this fact, it really freaks out doctors. If you test high three tests in a row and then one comes back normal-they are all in a dither about it. Those are not doctors who will likely help. You need a definitive doc who understands it wont get better until the tumor is out. Of course-these ideas are just that-ideas of things to explore. Endocrine stuff is far more complicated than I could have ever imagined and nothing is ever black and white (something I wish doctors in this field understood better).

For the growth hormone stimulation test results, I would look on entrez pubmed for research abstracts. They have a search engine just like any other site. Enter insulin tolerance test and growth hormone deficiency, or arginine stimulation and growth hormone deficiency. Much stuff will come up-try to stick with reports out of large american institutions so that your doctor will pay attention to them. (They can be such research snobs) For the Cushing's stuff enter both the terms cushing's and help into the big G search engine and see what pops up-that first hit is an excellent resource and one I use daily. You will find pituitary specialist names and hospitals, etc along with bios of folks just like you.

My doctor thought that I had Cushing's initially (then it was Addison's, now it's 'I don't know'). That's why I have researched all of this. I still am not sure what is wrong with me-if I do have Cushing's I have been in an extended low (like about eight months' worth) so I don't know if I am on the right track. In the meantime, I am seeing other specialists depending on my symptoms, trying to get someone who sees the big picture. So far I can't believe how little doctors want to think about someone like me. I know I'm not an easy answer but it seems it could be a real sense of accomplishment to help me...I guess they don't think it's worth it. I will continue my search until someone listens.

Hope that helps and please know I understand what a nightmare this journey is. Take care,
Sadie





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