Cushing's Info

I'm a 40 yr old woman.  A year ago I was diagnosed with stage 4 Carcinoid Cancer (a neuroendocrine cancer).  I've known something was wrong with my body for the last 4-5 yrs.  In 4 years I've gone from a sz 4 & 120 lbs to a tight sz 12 & 165 lbs.  Drs kept chalking it up to middle-age and depression.  I've even ask them, "Why do you think I'm depressed?"  The never had a real answer, other than 'Well, women your age are depressed' and 'Women your age tend to "let themselves go"'.  I even saw a therapist who said he wouldn't categorize me as being depressed.

When I first started gaining weight, I wanted to get a handle on it..  So, I began keeping a food & exercise diary.  I was only eating about 1,000 calories a day and I was STILL gaining weight.  I tried exercising more -and just found myself completely exhausted.  I cut out all sorts of foods.  I had some people telling me that maybe my body was going into "starvation mode" and hanging on the to fat - and to eat more.  So, I dedicated one month to eating between 1,200 and 1,350 calories a day.  At the end of that month I had gained TEN POUNDS!  And I went up another size!  I couldn't afford to keep going in THAT direction!

Symptoms:
* swelling in hands and feet
* buffalo hump - fatty lump at the base of my neck
* low bp (due to carcinoid cancer)
* buldging eyes (can really tell with pictures over the years)
* exhausted all of the time
* bouts of insomnia
* 2 summers ago I was a sex fiend - thinking about it ALL of the time;  Now - I could care less if I ever have sex again.
* normal sized arms and skinny legs
* flat butt
* abdominal fat & back fat
* fuller face
* stretch marks on my breasts, belly and upper thighs
* redness across my nose & cheeks (was tested for lupus at one point because of it)
* ruddy looking skin on face
* vertigo
* blurry vision
* bouts of moodiness/irritability
* memory problems
* increased hairloss (head)
* out of breath and exhausted with little physical activity, bedridden with high level of physical activity

Family & friends told me that I must just be lazy & not exercising enough - well, in some ways, yes - who the heck has the energy to exercise?  And exercise is supposed to give you more energy instead of making you bedridden for a day or two afterwards!  I played around with the calories.  It's all calories in vs. calories out, right?  I was able to lose 5 lbs after 3 weeks of eating between 600-800 caloires a day. But that was not realistic or sustainable.  I don't eat junk food - no cookies, cake, chips, white bread, white rice, white floor/processed foods, no fried foods, no fast foods, no ice cream, no candy, no mayo, no salad dressing, etc.  I eat 1-2 meals with red meat a week.  I eat a TON of veggies - which are all WAY low on calories & carbs.  STILL I've been gaining weight!  I kept thinking, 'Cripes!  I's hate to see what I'd look like if I had just let myself go!'.  Honestly, I think I'd be up to 300 lbs!

I've been mistaken for being pregnant mulitple times.  I've received unsolicited weightloss advice from family members.  I also received a "Biggest Loser" exercise dvd for xmas - that I did NOT ask for!  When people say, "Oh, you're probably just depressed & need to exercise more."  I reply, "I'm not depressed.  I'm angry and frustrated that no matter what I do, I gain weight!"  I try to explain that I've been skinny my whole life (graduated highschool at 105 lbs, got back down to 120 lbs after having a child and maintained that for 9 years before the weight gain began) - that this was NOT NORMAL for me.

Recently, while talking to other carcinoid cancer patients, the subject of weight gain came up.  Three of them told me that they had been diagnosed with Cushing's Syndrome.  After talking about it with them - and learning about what that weird fatty lump on the base of my neck is all about...  I made another dr appt.  I presented my case.  The dr saw the lump for herself.  I brought before and after pics of myself and my 4 1/2 yrs of food/exercise diaries.  Finally, I had a dr who listened.  Here were my blood test results that day:

* Cortisol levels - 4 times higher than normal
* Blood suger - borderline high
* B-12 - borderline low
* Red blood cell count - boarderline low
* Thyroid & white bc count - normal

Finally - I have a dr who's listening to me, I have validation that something is definitely WRONG with my body that's causing weight gain, and I'm going to see an endocrinologist!  Unfortunately, my family & friends are not believing me and think I'm being a hypochondriac.  So I've decided not to talk to them any more about it.  The connection with carcinoid is that carcinoid cancer can cause cushings if it's spread to the lungs.  Hopefully they'll find the tumors on the adrenal glands or the pituitary - higher likelihood of being benign and easier to remove.  I'm so happy that we may have found the reason for this insanity!

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