Dr. C Question

jude048 · July 18, 2006

Dr. C

I had my surgery on June 2/06. I lost well while on Optifast and as soon as I started eating any kind of "real food" after surgery I started to gain and I am still gaining. I had my first fill yesterday - 1cc in a 4cc band.

History: I had Cushing's - I had surgery for a pit adenoma several years ago. gained 130 lbs when I had cushings over 4 yrs - They told me my tumour was spidery as opposed to in a nodule for removal and that they took as much as they dared so as not to disturb optic nerve. I was having huge problems with peripheral vision and it was pressing on the optic nerve. Lost all weight after surgery - over 1 yr went down to 132 lbs from 265. Then suddenly about 18 months later gained 70 lbs in 7 weeks then crept up again to 249. Endocrinologist assured me that it was not recurrent cushings even though I once again had high ACTH and cortisol lovels. So of course I must respect the "experts" and accept their diagnosis.

Since I didn't have "Cushing's" according to the experts - I decided that I would try this surgery - I long to be my "real self" again. She has been lost for some time and it has changed my entire life - every aspect and not for the good. There is no way that anyone can understand what it is like to experience the "disdain" of the world as a "fat person" unless they have experienced both sides of that coin.

So here I am now - banded - $15 000 poorer - and I am still a diet "failure". Since the last gain - I have always eaten "low cals" - when I was on opti-fast - I had 2 per day and green veggies at night - around 600 cals and lost. Now of course I am bumped up to 900 - 1000 cals and I am gaining.

Questions:

I think that the high cortisol levels affect: how many cals I can take in and lose/gain - Am I correct??

Of course my pituitary does not work anymore because it was completely removed. I take 0.25 eltroxin daily. How is this going to affect my cal intake and loss/gain.

People keep telling me to eat more - I can't - doesn't anyone get the "FEAR" I have - and doesn't anyone get that I know my body best??? I know what my food intake has been for years and my cals have always been low - below 1200 on a daily basis for years and still gaining -

Sorry for the long post - but do you have any "wisdom" that you can share and perhaps an opinion about how my cortisol and ACTH is going to affect my calorie intake????

I appreciate your just reading the post.

thanks so much!

jude

Trace Curry · July 19, 2006

This is obviously a complicated scenario - if you have too much steroids on board it will make it hard to lose weight. I think you might be making it too complicated though - it doesn't have as much to do with your Cushing's or not Cushing's but probably mostly due to the fact that you have had only one fill, and a pretty conservative one at that. Until you are properly restricted, which won't be for another 2 fills more than likely, your weight loss won't start rolling along like you want.

Dr. C

Cincinnati, Ohio

www.TheBandDoctor.com 877.442.BAND

DISCLAIMER: I am not your surgeon, any comments made by me are not meant to be taken as medical advice, just general guidelines. Contact your surgeon about your specific problem!

NurseMichelle · July 19, 2006

Ya know Dr. C, I would just like to really thank you for taking time out of your schedule to help folks. I don't know what motivates you to watch this site, and respond to people, but it is very kind. Thank you.

jude048 · July 19, 2006

Dr. C

Thank you for the encouragement! I will hang in there for more fill adjustments.

Also I would like to thank you for all you do to help people here on this site. It is a truly great thing that you do out of the goodness of your heart! Everyone here appreciates it!

jude

Marimaru · July 19, 2006

Jude, I agree with Dr. C about seeing how you fare with a fill, but you might also look up VinesQueen here on the forums. She was recently diagnosed with cushings and a pituitary tumor, and you might have someone to co-miserate with and compare notes with? She's a very very helpful person, and I'm sure she'd be happy to share her banded experience with you.

tztmama · July 19, 2006

I empathize with you. It is sooo frustrating. I went on so many diets and if I eat more that 800 calls a day, I GAIN.........no matter what the diet is. Some of us just can't metabolize the calories. I don't have answers and am so grateful Dr. C is here for us.

Take care,

Darla

vinesqueen · July 30, 2006

Then suddenly about 18 months later gained 70 lbs in 7 weeks then crept up again to 249. Endocrinologist assured me that it was not recurrent cushings even though I once again had high ACTH and cortisol lovels. So of course I must respect the "experts" and accept their diagnosis.
...

Questions:

I think that the high cortisol levels affect: how many cals I can take in and lose/gain - Am I correct??

People keep telling me to eat more - I can't - doesn't anyone get the "FEAR" I have - and doesn't anyone get that I know my body best??? I know what my food intake has been for years and my cals have always been low - below 1200 on a daily basis for years and still gaining -

jude

Hi Jude, you just had the one pit surgery? Have your adreanals been assessed? I have been researching Cushing's like a woman obsessed since I was diagnosed. Have you done any further testing, any midnight salivaries, 24hour UFC to confirm your suspicions? Just because one Endo says you are cured does NOT mean you have to accept his assessment of you. You are the expert in your body, not the Endo.

I went to see a well respected endo who diagnosed me as not having Cushing's "because it's just too rare." The man hadn't even seen me when he'd made his diagnosis. :bananapartyhat: I finally had my Band Surgeon write me a referal to see Dr. Ludlam at OHSU in Portland OR, because I coudn't get any help locally.

The last UFC result I had from a week ago was 299 cortisol, with the base top number of 80. Tomorrow I'm going to call and get the results from the rest of that weekend. I had more than three times the normal amount of cortiosl.

I am aware of several cases where the inital pit tumor removal does not cure Cushing's 100%, and that there are cases of reocurrences, some times because not all the pit tumor was removed, sometimes because they have secondary adrenal caused Cushings.

70 pounds in 7 months is an amazing gain. I'm just so sorry that once again you were dismissed as a hysterical fat woman who's just looking for an excuse. But please don't dismiss the possibility that your Cushing's has returned.

Dr. C might be right, that you might need an extra fill. But given your history, you might not see any result from additional fills.

I spent the better part of a year trying to get my fills just right. And for me, NOTHING HAS WORKED. I spent a full month at below 700 calories and I managed to lose 1.5 pounds that month. Which I gained right back when I went back to 1000 calories a day. In fact, I gained 10 pounds in one week at 1000. Not Water weight. I've recently had a good amount of fill removed because when I cycle High, it really affects my restriction level. It does me no good to be super tight because I'm not going to lose weight, and it isn't good for my band for me to be constanly PB-ing. It also isn't good for me psychologically to be in pain from being too tight.

http://cushings.invisionzone.com/index.php? is the message board for Cushies. http://cushings-help.com is the main site with a whole lot of useful information.

Jude, please trust me when I say I completely understand how you feel about this whole thing. I know the frustration of this being yet another failed diet scheme, another fad that just doesn't work, and will never work. For the time being, I I have had to let go of any thoughts of weight loss with the band, for the time being. I know your fear, because it is the same fear that burns in my breast. The same fear that haunts the corridors of my mind and my heart.

The thing that keeps me going is knowing that I'll soon be scheduled for surgery. Surgery that will give me back my life.

Please, please, please do not hesitate to PM me. I want you to know that I'm here for you. I want you to know that someone truely does understand what you are going through.