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What else could be wrong if this is not cushings?

By Anonymous May 28, 2010 - 4:35pm
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about 6 yrs ago I was diagnosed with PCOS, earlier this year I became very miserable about the symptoms of this so went on line to see what I could find about excess hair, acne and weight gain, I came across a passage that read 'Cushings can mock the symptoms of PCOS', I started to doubt the diagnosis of PCOS as I have 3 children and had no probs conceiving. To cut a long story short I have had blood tests for cortisol, a 24hr supression test - the results were borderline, a 48 hr surpression test - again slightly elevated and a 24hr urine collection which revealed marginally elevated results. My consultant wants me to repeat these tests as he was elimating Cushings, he is still very doubtful I have Cushings, other syptoms I have are Weight gain, mostly on my waist, acne, exess hair growth, mood swings, lower back pain, stretch marks, headaches, I drink a lot of fluid (no alcohol or rarely), I urinate a lot, tiredness, ocassional nasuea and very recently, over the last 3 - 4 weeks panic/anxiety attacks, abscent mindedness and fuzzyness of the head. I also experience tingling in my face and imparticular my eye twitches a lot. I do not feel myself and am finding daily life difficult at the moment.

I do NOT have other symptoms such as a hump on my back or redness of the face, I feel my tummy looks out of proportion to the rest of me and my face, in my opinion is rounded.
We have a considerable amount of family history of cancer, I have already had colcospy treatment following abnormal smear, this was at stage 3 but all smears have been fine since, I also had a mole removed which was a bit ambigious.
I feel old and that I am turning into a nervous wreck and a hypochondriac, just want to stop feeling this way

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EmpowHER Guest

Dear anonymous-

I'm currently going through the exact same thing. My doctor thought I had PCOS, but my labs came back normal, so I was given the 24 hour free urine cortisol test and the results came back elevated. Since then i've had multiple labs drawn and other diagnostic test but they are all coming back normal. I do, however, continue to have the signs and symptoms of cushings that you mention you have-- round face, acne, weight gain, facial hair grown, fatigue-- Have you done any of the tests for cushings yet? Maybe ask your doctor to order the free urine cortisol test and ask if he can start testing you for cushing's. Like somebody mentioned, its really important to advocate for yourself now and work with them to figure out whats going on. I hope you figure out what it is soon, I know how frustrating it is to not feel like yourself at all and to be completely changed physically and emotionally. Keep us posted, you're not alone!

June 10, 2010 - 9:49pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Hi, yeah thank you for your comments it really helps to know I am not the only one, was starting to feel like I am a freak, my consultant has decided to do further tests, he has advised I am a diagnosis dilema as I dont quite fit the bill for PCOS and have no clinical features in his opinion of Cushings, other than a raised BMI, weight gain and central obesity, however he also added that he can not ignore the fact that the Dexamethasone Supression blood tests showed non supression and 24hr Urine collection was also elevated, I am in the process of doing the tests again and based on the results the 2nd time round he is going to arrange imaging of the adrenal and piturity glands, so still playing the waiting game, but still feel silly and as if somehow I making this a bigger issue than it is. I just want to be myself again, this all started as the continued dtruggle with my weight finally got too much in February as did the excessive hair growth, so I did my own reasearch on the internet as to how I could treat these syptoms of PCOS, as for the past 6 years that is what I believed I had and this is when I came accross Cushings, so as you can see this has been ongoing for quite sometime. Thanks again for your comments, I will keep you posted when the new test results are in.

June 13, 2010 - 3:27am


Please don't be so hard on yourself. You have symptoms that as of yet don't have a good explnation; you have a very busy work and family life; and you are having anxiety issues right now. All that is real. When you say something like "I am sure I just need to pull myself together" or "perhaps this really is mind over matter time," it sounds like you are thinking that you yourself are to blame for the place you are in right now. Nothing could be further from the truth.

So many times these days, it is up to us to be our only real health advocate. We have to learn about our bodies and we have to work with doctors to get diagnosed and cared for. Sometimes it takes a long time to actually get there. The founder of this site started it for the same reason. She went through unhelpful and even unneccessary medical procedures -- and felt the toll both physically and mentally -- before she finally found a doctor who helped her figure out what was going on.

Let me echo Susan's question -- what does the doctor say the next steps are? -- and Pat's advice -- sometimes you really need to find a new doctor who will go over everything with you from the very beginning. Don't decide that your symptoms are something that you can just "pull yourself together" over. You are not crazy, OK?

June 1, 2010 - 8:56am
Expert HERWriter Guide Blogger

Anon - Sounds like you're going through a lot of frustration right now.

It would be a good idea to repeat the tests and use a different lab since results can vary widely from lab to lab.

You could also consider going to see a new physician who can review your history and symptoms and work with you on a second opinion diagnosis.

You haven't mentioned your age, is it possible that you're dealing with hormonal changes in your body or possibly some of the effects of being in the perimenopause stage of life?

May 28, 2010 - 4:55pm
EmpowHER Guest
Anonymous (reply to Pat Elliott)

I am 33 years old

May 28, 2010 - 5:33pm
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