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Several folks have asked me about Cushing's, so here is some basic information about it. I've been diagnosed for just over a month now, and I'm still learning about it. The following is information that I've cut and pasted, so the links will take you to the source I pulled them from. Something like 90% of Cushings is caused by a tumor on the pituitary gland in the brain, with something like 8% caused by tumors on the adreanal glands (near the kidneys), the final 2% is caused by a tumor somewhere else, such as the lungs, or it is caused from being on long term steoroids, such as Prednisone.

Right now, the fatigue is opressive.

Cushing's Syndrom http://www.niddk.nih.gov/health/endo...s/cushings.htm

Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol. Sometimes called "hypercortisolism," it is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year.

... Treatment depends on the specific reason for cortisol excess and may include surgery, radiation, chemotherapy or the use of cortisol-inhibiting drugs. If the cause is long-term use of glucocorticoid hormones to treat another disorder, the doctor will gradually reduce the dosage to the lowest dose adequate for control of that disorder. Once control is established, the daily dose of glucocorticoid hormones may be doubled and given on alternate days to lessen side effects.

(this site has some good information, I especially like the symptom list. My DH was quite shocked when he realized that out of something like 43 symptions, I have 33 of the indicators.:faint:)

http://www.wrongdiagnosis.com/c/cushings_syndrome/intro.htm

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Vines Im so sorry if this is what is going on with your weight loss? maybe now you will get some answer. best of luck to you! your friend JOHNQ

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Vines,

How was your diagnosis detected? Did they do blood work or run thyroid tests??

Kelli

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Thanks for sharing that info vinesqueen. I can't imagine how you feel, but I'm sure your in the best of care. Learn as much as you can and ask lots of questions when you see the docs. Of course, you already know this....I'll keep quiet. :kiss Keep your chin up and try to post as often as you can. :hug: You are a very special person and have a lot to offer here and there is so much we can all learn from you.

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I am so glad you finally have a diagnosis - as happy as you can be being diagnosed with something like this. I just know all the frustration you have been through, all the wondering if it was you and why the band wasnt working for you. You have an answer now and the relief to know that must be immense. You are such a strong person to keep going like you have. I know I would have given up long ago.

Good Luck Vines - you deserve it.

Hugs

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VQ looks like you are on top of things. I wanted to share some websites with you that you might find helpful. I am sure they will just reiterate what you already know. But any info can be helpful. M

http://csrf.net/index.htm

This is a Cushing's Support and Research Foundation that has some wonderful info and BEFORE and AFTER PHOTOS of folks that have been treated. It will knock you over with a feather to see the changes in these folks.

www.pituitary.org.uk

This is a uk organization but in has good info in the patient leaflet. Do a search for Cushings and it will come up.

www.merck.com

This is the Holy Grail book for healthcare professional students. Section 2 Chapter 7 deals with Pituitary Disorders.

www.Endocrineweb.com

Has a section of Laparoscopic Adrenalectomy. Limited but useful.

Hope this is somewhat useful. M

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Wow, those pictures are something else!

Hang in there Vines! Looks like there's hope! :confused:

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Glad you gave us something to read. I was one of those that needed this info.

Getting this properly treated means that you should lose weight on you own?

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Hi Vine,

I have a close friend that had Cushings. She had a tumor in the pituitary gland. They surgically removed it and the first surgeons could not get all of it, so she had a second surgery. She is doing well now. I am sorry that this has happened to such a nice person like you.

Hugs,

Babs in TX

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thanks everyone. I admit to that part of me is releaved to finally have an answer, but I'm terrified by that answer. I don't know if this is the answer. I'm terrified if I have it, and yet I'm terrified if I don't have it.

I can't find the energy to be supportive for hardly anyone here. I'm scared, freaked out and I don't know what else.

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Wow vines, thanks for this info. I've never known anyone with Cushing's and it's great to have more information on the subject. I hope that once you've had your blood work and find some sort of way to monitor/control it that you'll start losing weight again. *hugs*

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Big Hugs. That's all I can offer. I hope you get the final word, soon.

Keep Dancing, Vines.

We all love you.

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    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
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    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. summerseeker

        Life as a big person had limited my life to what I knew I could manage to do each day. That was eat. I hadn't anything else to look forward to. So my eating choices were the best I could dream up. I planned the cooking in managable lots in my head and filled my day with and around it.

        Now I have a whole new big, bigger, biggest, best days ever. I am out there with those skinny people doing stuff i could never have dreamt of. Food is now an after thought. It doesn't consume my day. I still enjoy the good home cooked food but I eat smaller portions. I leave food on my plate when I am full. I can no longer hear my mother's voice saying eat it all up, ther are starving children in Africa who would want that!

        I still cook for family feasts, I love cooking. I still do holidays but I have changed from the All inclusive drinking and eating everything everyday kind to Self catering accommodation. This gives me the choice of cooking or eating out as I choose. I rarely drink anymore as I usually travel alone now and I feel I need to keep aware of my surroundings.

        I don't know at what point my life expanded, was it when I lost 100 pounds? Was it when I left my walking stick at home ? Was it when I said yes to an outing instead of finding an excuse to stay home ? i look back at my last five years and wonder how loosing weight has made such a difference. Be ready to amaze yourself.

        BTW, the liquid diet sucks, one more day and you are over the worst. You can do it.

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