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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
HERWriter Guide

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
HERWriter Guide (reply to Anonymous)

Thank you for that update, Anon!

It isn't likely that you are going through menopause (although that is still a possibility) since you are only 33 and I certainly don't think you are a hypochondriac although when we are stressed and worried about our heath we can pick up cues that aren't really there.

Stretch marks aren't worrisome and your eye twitching may be caused by fatigue and stress - two common triggers for that. The mole issue is pretty normal (often when we have one removed, we find that there was potential for cancer because that's the case with most moles anyway) and I'm glad your abnormal cervical cells are being closely monitored. But again, this is something that many women face. I know it probably seems like a ton of stuff is going on with you but it still seems pretty standard, in the whole scheme of things.

The rest of your symptoms are indeed very common for PCOS and even though infertility is see in many women with this condition, others go on to have children with no medical intervention. In fact, many women with children are diagnosed after they have completed their families. As I said, PCOS is a leading cause of difficulty getting pregnant but by no means implies that all women with PCOS will have that problem. If that is the only bell ringing to cause you concern if you really have PCOS then you may be incorrect in this case. That's merely a possibility, though.

But by all means get retested (as Pat said, different labs come up with different results which in itself is a bit worrisome) for Cushings, if you feel that may be a possibility. Never be afraid to ask for retesting or a second opinion.

Your stress and panic attacks may be resulting from your confusion right now. You may need a little counseling and reassurance for that (please don't opt for medications for it straight away since your stress is normal and pills will only treat the symptoms not the cause) and I think once you are feeling better physically, you'll do better emotionally. And please remember that we are ALWAYS here for you to come to, anytime.

Please go ahead and have a retest and see where that brings you and also bear in mind that PCOS may be your legitimate issue. However, checking all possibilities is always a good idea.

What do you think?

May 29, 2010 - 6:31am
EmpowHER Guest
Anonymous (reply to Susan Cody)

When I had blood tests done prior to the Cortisol checks my testosterone levels and other hormones were all within the normal range, I have had 2 scans of the ovaries and no cysts found so by medical defination the consultant confirmed that he did not think I had PCOS. I will have the retests done but have decided to be more relaxed about them, I have read some information on your site about the effects of raised Cortisol and have decided there are things I can do myself naturally to eliviate the symptoms, I really dont want to feel this way anymore as it is so out of character and can be soul destroying and close friends and family are noticing the changes in my personality, I just want to be ME again, for my sake and most importantly for my children.

May 29, 2010 - 3:12pm
HERWriter Guide (reply to Anonymous)

Hi again - thanks for the update!

I wasn't aware that your consultant pretty much eliminated PCOS - I was only aware he didn't think Cushings was the problem. Thanks for clearing that up. And I so understand wanting you be the old you again - the real you. It's awful to walk around wondering what has happened to the person you used to know - the person that used to be you.

Since your consultant is eliminating things (which is very important) what has he said is the next step for you?

I have one more question for you - do you think your symptoms of stress and anxiety are being brought on by your physical health? Or do you think this is happening concurrently? Perhaps partly brought on by your health but perhaps brought on by other circumstances? Is there anything else going on in your life that is causing stress and anxiety?

May 29, 2010 - 4:08pm
EmpowHER Guest
Anonymous (reply to Susan Cody)

I admit at the moment I have a lot of added pressure in my life, I would not even know where to begin, but I have only felt this way for the past 3 - 4 weeks, and it is getting progressively worse. My blood tests started in February so it is diffiult to say what came first, the stress causing my ill health or vice versa? I am usually a person who can cope with pressure, I have 3 children and my husband works away from home and I work 30 hrs a week, my job is a managerial position so has added pressures too at times, however, under normal circumstances I do not crumble, admittedly there is added pressure at the moment, and after reading some articles I am wondering if my elevated Cortisol levels are because of pressures whih have built up and up over the past few years thus having this effect on my health, I often joked that I was a human experiment to see how much stress one person could take before they broke, perhaps now I have broken and need to take simple steps to put things right myself, perhaps this really is mind over matter time, I am really trying to make myself be myself but am finding every day life a struggle at the moment - I suppose I am a little anxious about the tests too... just in case, I feel I have been waiting forever when all I really wanted was a reason as to why I now struggle so much with my weight and some help for my excess hair growth. I am sure I just need to pull myself together and am just hoping I can find the strength to do this.

May 30, 2010 - 3:58pm
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