Avatar universal

Intermittan Cyclic Cushing's Disease

I have been searching and searching to find out what is wrong with me, and I have EVERY symptom of Intermittant Cushing's,  I have even been tested for Cushing's twice before and was told that my symptoms are very similar to Cushing's, but the tests kept coming back normal. Actually, someone on another forum mentioned this, and it dawned on me that the doctor two years ago said I probably have Intermittan Cushing's, BUT she said there was nothing they can do about it.

I have read articles and research (before I go see her again this week) stating there IS something they can do, there is medication (although they have to play around with it a bit to get it right), and there is surgery.

Does anyone know anything about this?  I want to go in prepared because I have been ill for years and became critical a few months ago.   I am 57, gained a huge amount of weight within months when I was in my 20's, lost it, gained like that again in my 30's, lost it, and then gained like this again about 3 years ago, only this time, I've not lost it and have many serious other issues that have come on really fast.  Some are edema, congestive heart problems, "stiff" heart, rapid heart rate, high blood pressure, osteoporosis, diabetes, and on and on and on.

One thing that I have that really scares me and I haven't heard of this as being a "symptom" is my entire chin, neck and esophagus is totally numb and when I eat anything, I get horrible burning down my throat.  Been tested for PH, motility, GERD, stomach emptying, everything is normal.

What does anybody know about this disease?  And, do you know of treatment and HOW to find this disease, as it is really tough to diagnose.
7 Responses
Avatar universal
I had it. I was diagnosed with cyclical pituitary Cushing's disease.

It is very difficult for the average doctor to diagnose, impossible for the silly [read: stupid] and requires an expert. Some doctors feel hormones do not cycle. I, being the wise, er... you add the rest - asked him what about the period?

That being said, you have to test, and you have to test often, and correctly. Since you sound cyclical/episodic, it is now important to find out when you are having the rise in cortisol. I had mine at night - hence my sleeping was awful. I was low during the day though -so 24 hour tests were normal as I was sooooo low and it cancelled out my highs. So night testing helped me - salivas and 10 hour UFCs.

You need an expert to let you test a lot. You may have to travel.
Avatar universal
OMG, you may be my hope!  I copied this post and your other post and am taking it in with me on Tuesday!  Did you have all these things go wrong with you?  How did they treat it and are you better?  I will go in to the hospital every damn day if I need to to get them to test and find this, but travelling would be out of the question as now I'm not working because I've been so ill, and I absolutely, positively DON'T HAVE THE MONEY!  Isn't that sad? But, this doctor said two years ago that this could possibly be intermittant Cushing's. she just said that there was nothing that could be done.  That's why I have compiled so much research on this because there are papers that doctors have written that show that they DID try medications and even surgery.  They did do a cortisone infusion test, but it showed nothing two years ago.

Can you e-mail me back about what treatments they used on you and how they found this?  ***@****
Avatar universal
I just got results of another 24 hour urine test and it came back normal AGAIN!  Does that mean anything.
Avatar universal
This morning is when I go to that University Hospital.  My cortisol must be lowering because I've been up since 6 am throwing up again.

I can't stand this!  And, I want you to know that I also know that others, including you, are also very ill, and I pray for you, too.  I know I'm not the only one on here that is ill.   Will post any results as I get them.

God Bless
Avatar universal
So disappointed again.  I went to the doctor armed to the teeth with information, and although she does want to continue testing for intermittant Cushing's, she was nixing every other possible thing.  I asked her about a tumor on the pituitary and why they haven't done any MRI's or anything, and she said something about the lab results didn't indicate a tumor or a pituitary problem.  But, the labs were over a YEAR ago!!  

Then, I asked about other adrenal problems, and she poo poo'd those too!  She took blood work for estrogen levels, more thyroid panels, (and when I asked about the FREE T3 and T4's, she said they don't test for the FREE T4 for some stupid reason, I didn't understand), and then she gave me three bottles to collect 24 hour urine for the next couple of months, then I will make another appointment.

She actually said that my symptoms were NOT indicative of Cushing's, when I have read differently, I have all the symptoms!  But, at least I got her to test for it and she's gonna keep testing for it.  

There is another doctor here that is supposed to be one of the best for this kind of thing, and I do have an appointment next week, but I'm not sure he takes my insurance and this is only a "consultation."  Which basically means that I am going to have to pay, which I can't.  I am on Medicaid and Medicare because I'm totally disabled now, and hardly anyone that's really good takes it!

As for the numbness of my jaw and throat, etc., she doesn't have a clue, like everybody else.  She said I should make an appointment with an Internal Med. doc, so I went downstairs to do that and they said they were booked for months!  I explained to them that I have been critically ill, hospitalized twice, in extreme pain and totally numb, and they didn't even seem to budge.

But, I stood there and started crying and said I wasn't leaving until someone DID SOMETHING!  When I told the receptionist about the numbness and the pain, she got her supervisor and they started calling patients to "rearrange things" and got me in tomorrow morning, thank GOD!  

I have no idea what is going to happen, I told them that I was told this hospital was the place to go, and then I couldn't even get in!  So, I am going tomorrow simply because I would not budge.  I told them if they didn't find an appointment for me, I was going to go through emergency, but the supervisor and the receptionist really came through.  

I don't know what the test results are yet, but I will post them as soon as I know.  I am just so disappointed again, no one knows what to do or what is wrong, and they ARENT' LISTENING TO ME!

Will keep you posted....
Avatar universal
Checked online and some of the test results are back, they are:

AST-87 (says it's high)
PROT TOT-6.1 (says it's low)
BILI T-0.7
ALT-85 (says it's high)
ALB-3.3 (says it's low)
TOTAL T3-200 (says it's high)

Any hints?
Avatar universal
I hope you're doing better. :( What wound up happening? I'm going through something similar but I'm not as bad as you. I hate every day and feel like crap but it sounds like what you're going through is worse than awful. I hope you're better!
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