Can I get some help from others who have been diagnosed with Cushing's ?
I'm in the process of fnding out if I have Cushing's, and I was hoping to get some information from those who have actually gone through it...... what were your main symptoms, how you felt, if you've been healed, etc.
To give you a brief overview of what I'm dealing with:
From my last tests, (not including my most recent tests):
My cortisol was high
my testosterone was high
I have hirsutism
My blood sugar was high
I noticed a small bump on the back of my neck, but I didn't mention anything to my doctor, maybe she did and that's why I had to get all these tests done.
Also, if I exercise for too long, all hell breaks loose.......my hunger gets MUCH worse, it seems like my libido goes way up, and my hirsutism gets a little worse.
Has anyone had to tone down the amount of exercise they do when they were diagnosed with Cushing's ?
If you can't find anyone on here with Cushing's to talk with, there's a forum on the Pituitary Network Association's website pituitary.org. There are people on that forum who have Cushing's. I don't know if any of them also have PCOS. I had a pituitary tumor as well, so I can talk to you about that. But I don't have Cushing's so I don't know how much I can help otherwise. I hope this helps a little.
__________________ No PCOS diagnosis yet...
Feel free to ask me about hyperprolactinemia though, just had my prolactinoma removed through brain surgery. Happier and healthier already... To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
my doctor thought i had cushings for almost a year before i got the PCOS diagnosis. and at the time they kept testing me and testing me and it kept coming back positive but now i know and they know i have PCOS but i have the same symptoms
If you can't find anyone on here with Cushing's to talk with, there's a forum on the Pituitary Network Association's website pituitary.org. There are people on that forum who have Cushing's. I don't know if any of them also have PCOS. I had a pituitary tumor as well, so I can talk to you about that. But I don't have Cushing's so I don't know how much I can help otherwise. I hope this helps a little.
Thank you.
What kind of symptoms did you have before they found out you had a pituitary tumor ?
They found my pituitary tumor as the result of a blood test my gyn took to determine if I had PCOS. She found that I had a high prolactin level and suspected that I had a pituitary tumor. I went for a MRI and there it was. It wasn't until two years later that I started to get really sick that made me think that I might have Cushing's. I started having extreme fatigue, weight gain (despite exercise and diet), worse acne, a lot of depression and anxiety, headaches all the time, and I have had a fatty pad between my shoulders as long as I can remember (which I think looks a lot like what they call a buffalo hump). I also have the irregular periods and skin that bruises really easily. From the information I could find it sounded like Cushings and since I already knew that I had a pituitary tumor (which can cause Cushings), I was pretty convinced that's what was going on. I made my endo give me the 24 hr urine test and it came back negative. Despite two endos telling me that my prolactin level couldn't cause the symptoms I was experiencing, once my levels started to decline I felt better. Now that I've had the tumor removed I feel even better. What I've found is that all hormone imbalances (PCOS, Cushings, Hypothyroidism, etc.) have similar symptoms so it gets hard for doctors to narrow it down. Hopefully your doctor is just trying to rule out Cushing's. Good luck with your tests.
__________________ No PCOS diagnosis yet...
Feel free to ask me about hyperprolactinemia though, just had my prolactinoma removed through brain surgery. Happier and healthier already... To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
I am sorry i dont have any information on Cushings, but i just wanted to say good luck with your test results.
Rachel
__________________
Dx: Jan. 2009
Meds: Taken off Met!!Doc. wants to see my levels off to make sure I even need it(WooHOO).Put on Spironolactone.Taken off NuvaRing until ready to TTC.
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Other Dx: Hashimoto's Disease and possible IBS/IC/ENDO.
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My endo told me that You can Have a false positive for cushings if you sufer from deppresion and allot of other diffrent things can cause a false positive but he would not give me a test because he said I did not look like i had it? How do people with cushings look? because I think I have alot of the symptoms of it.
They found my pituitary tumor as the result of a blood test my gyn took to determine if I had PCOS. She found that I had a high prolactin level and suspected that I had a pituitary tumor. I went for a MRI and there it was. It wasn't until two years later that I started to get really sick that made me think that I might have Cushing's. I started having extreme fatigue, weight gain (despite exercise and diet), worse acne, a lot of depression and anxiety, headaches all the time, and I have had a fatty pad between my shoulders as long as I can remember (which I think looks a lot like what they call a buffalo hump). I also have the irregular periods and skin that bruises really easily. From the information I could find it sounded like Cushings and since I already knew that I had a pituitary tumor (which can cause Cushings), I was pretty convinced that's what was going on. I made my endo give me the 24 hr urine test and it came back negative. Despite two endos telling me that my prolactin level couldn't cause the symptoms I was experiencing, once my levels started to decline I felt better. Now that I've had the tumor removed I feel even better. What I've found is that all hormone imbalances (PCOS, Cushings, Hypothyroidism, etc.) have similar symptoms so it gets hard for doctors to narrow it down. Hopefully your doctor is just trying to rule out Cushing's. Good luck with your tests.
Thank you.
I know, it's been extremely hard for me over the years just for doctors to even listen to what I'm saying, much less give me the right treatments.
Well, tomorrow I get my results from my doctor, keeping my fingers crossed.
my doctor thought i had cushings for almost a year before i got the PCOS diagnosis. and at the time they kept testing me and testing me and it kept coming back positive but now i know and they know i have PCOS but i have the same symptoms
It was exactly the same for me - the consultant was convinced I had Cushings and almost seemed disappointed when eventually after all sorts of tests and a short hospital stay he had to make a diagnosis of PCOS!
My endo told me that You can Have a false positive for cushings if you sufer from deppresion and allot of other diffrent things can cause a false positive but he would not give me a test because he said I did not look like i had it? How do people with cushings look? because I think I have alot of the symptoms of it.
My consultant thought I looked like I did have it - my face was red but that was because I always get flustered at the hospital! Also Cushings sufferers tend to have round 'moon' shaped faces.
I don't think I have a 'moon shaped face', my face has always been fuller and round even when I was skinny.
My ankles or lower legs are actually quite thin, I carry mostly all my weight in the mid section. I sometimes look pregnant, it's so embarrassing !
It sounds like Cushing's to me.....heck, I don't know anymore.....then again, those who have insulin resistance also carry most of their weight in the mid section......
Both you and Mishee both sound like you have Cushings. Having had cushings (and a prolactinoma) I can tell you it isn't easy to diagnose. Your hormones cycle, so you can have low, normal or even high results. It's catching those high results that's hard. And if you don't catch the highs in one or two tests, docs rule out. They think Cushings is too rare. It is NOT. It has many similar symptoms as PCOS, but Cushings is treatable. I am a year out from surgery and I feel better than I have since I was a teen. I've lost 60 lbs, no more oily skin, no more extra hair, no more anxiety...
I was overweight all over. I never had my weight just in my stomach. I never had the hump and my stretch marks never were any color other than pink. I was in denial that I had anything more than PCOS too. But I was wrong. And after I went across country to see a specialist in Cushings, he diagnosed me AND treated me. I wasted over a year seeing docs locally and having them test me for Cushings. The tests that DID come back high, they just said I was stressed or something.
With Cushings you have to be your own medical advocate. Please please google Cushings Help Message board and ask the gals there your questions and they will give you a ton of information. I'm not trying to push anything, I just want people to get help. I've seen too many people feel so bad and not get the right help. A few tests do not say you have Cushings or that you do NOT have Cushings for that matter. You need a LOT. Blood tests at 8am, 4pm and midnight (to determine diurnal rhythm), 24 urine tests at all times of the month, salivary tests and even an MRI and/or CT scan. (The MRI would be for your pituitary gland and the CT for the adrenal glands.)
PM me if you have any more questions or concerns. You shouldn't have to go on feeling like you do. Cushings is treatable and you CAN feel better. The longer you go on having it, the more it does to your body and the harder it is to feel better.
Thank you so very much for all the info, you have no idea how much I appreciate this. I can't believe how many people whom you have never even met can be so helpful. You make me feel hopeful as well, I'm glad that everything has gone back to normal for you after surgery, that's great !
I saw the endo today and just as I suspected she was ready to write me off. There was one test missing though, it didn't come back yet, so she called the lab for the 24 hour cortisol test, and they gave it to her over the phone.
After hearing the result of that she then ordered more tests......when 2 minutes prior she was ready to just dismiss me.
Anyway, my urine cortisol is 281 (I'm in Canada by the way, so the values may be different than those in the states.)
ACTH is 3.8 pmol/L (ref range is 0.0 - 10.1)
Cortisol was okay this time - 375 nmol/L (ref range is 170-720)
DHEAS is 7.6 nmol/L (ref range is 1.2 - 7.3)
So, now I have to do other tests, 1 mg dexamethasone at 11pm at night and then go in to have my blood test at 8am the following morning.
I'm doing another 24 hour urine test, and measuring free cortisol as well.
Anyway, I appreciate all your comments and thoughts on this, thank you !
Both you and Mishee both sound like you have Cushings. Having had cushings (and a prolactinoma) I can tell you it isn't easy to diagnose. Your hormones cycle, so you can have low, normal or even high results. It's catching those high results that's hard. And if you don't catch the highs in one or two tests, docs rule out. They think Cushings is too rare. It is NOT. It has many similar symptoms as PCOS, but Cushings is treatable. I am a year out from surgery and I feel better than I have since I was a teen. I've lost 60 lbs, no more oily skin, no more extra hair, no more anxiety...
I was overweight all over. I never had my weight just in my stomach. I never had the hump and my stretch marks never were any color other than pink. I was in denial that I had anything more than PCOS too. But I was wrong. And after I went across country to see a specialist in Cushings, he diagnosed me AND treated me. I wasted over a year seeing docs locally and having them test me for Cushings. The tests that DID come back high, they just said I was stressed or something.
With Cushings you have to be your own medical advocate. Please please google Cushings Help Message board and ask the gals there your questions and they will give you a ton of information. I'm not trying to push anything, I just want people to get help. I've seen too many people feel so bad and not get the right help. A few tests do not say you have Cushings or that you do NOT have Cushings for that matter. You need a LOT. Blood tests at 8am, 4pm and midnight (to determine diurnal rhythm), 24 urine tests at all times of the month, salivary tests and even an MRI and/or CT scan. (The MRI would be for your pituitary gland and the CT for the adrenal glands.)
PM me if you have any more questions or concerns. You shouldn't have to go on feeling like you do. Cushings is treatable and you CAN feel better. The longer you go on having it, the more it does to your body and the harder it is to feel better.
Great info and great blog. If I may ask, what were your symptoms prior to diagnosis that led you to believe cyclical Cusings? Where did you go for official diagnosis?
Both you and Mishee both sound like you have Cushings. Having had cushings (and a prolactinoma) I can tell you it isn't easy to diagnose. Your hormones cycle, so you can have low, normal or even high results. It's catching those high results that's hard. And if you don't catch the highs in one or two tests, docs rule out. They think Cushings is too rare. It is NOT. It has many similar symptoms as PCOS, but Cushings is treatable. I am a year out from surgery and I feel better than I have since I was a teen. I've lost 60 lbs, no more oily skin, no more extra hair, no more anxiety...
I was overweight all over. I never had my weight just in my stomach. I never had the hump and my stretch marks never were any color other than pink. I was in denial that I had anything more than PCOS too. But I was wrong. And after I went across country to see a specialist in Cushings, he diagnosed me AND treated me. I wasted over a year seeing docs locally and having them test me for Cushings. The tests that DID come back high, they just said I was stressed or something.
With Cushings you have to be your own medical advocate. Please please google Cushings Help Message board and ask the gals there your questions and they will give you a ton of information. I'm not trying to push anything, I just want people to get help. I've seen too many people feel so bad and not get the right help. A few tests do not say you have Cushings or that you do NOT have Cushings for that matter. You need a LOT. Blood tests at 8am, 4pm and midnight (to determine diurnal rhythm), 24 urine tests at all times of the month, salivary tests and even an MRI and/or CT scan. (The MRI would be for your pituitary gland and the CT for the adrenal glands.)
PM me if you have any more questions or concerns. You shouldn't have to go on feeling like you do. Cushings is treatable and you CAN feel better. The longer you go on having it, the more it does to your body and the harder it is to feel better.
Cushiemama---
Thank you so much for posting. I'm so glad there's someone on here who knows about Cushings and how hard it can be to get a diagnosis. I don't have Cushings..., I was tested when I was at the highest stress time of my life. I also had my prolactinoma removed and my cortisol dropped afterward to the point that they gave me hydrocortisol for a couple days. I didn't feel worse taking it, no reaction at all, and since then my cortisol has gone back to normal levels. I'm focusing on getting my endo to look into whether I have IR, I haven't yet gotten a PCOS diagnosis.
If I can ask, you said you had a prolactinoma... what treatment did you get for it? I ask because I went through the medications, which never really helped and made me ill. I finally got to the point where I wanted to have the tumor removed, so I did. My prolactin level hasn't lowered to normal levels yet though (it's been two months). I was told that my levels should have lowered right away. I started vitex about a week ago because I really do not want to go back on medications for my prolactin levels. People keep telling me to give my body a chance to heal itself and I definitely want to, but it took so long just to get to this point. I don't want to spend another year of my life trying to sort this out just to be stuck in the same position. I'm trying to be proactive about my health but it's hard when doctors don't view what you're going through as serious.
I'm so glad that you posted. I didn't know about the cyclical nature of Cushings, even though I read everything I could find about Cushings. I wish I could give you a hug. Thanks so much.
__________________ No PCOS diagnosis yet...
Feel free to ask me about hyperprolactinemia though, just had my prolactinoma removed through brain surgery. Happier and healthier already... To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
Can I get some help from others who have been diagnosed with Cushing's ? 
