Cushing's

[ohMom]

is there anyone here with Cushings?

 

[peemagg]

I don't have it, but my miniature poodle does.

 

[talicskai]

I had a very good friend that had it ~ she died in a car accident but I became quite knowledgeable it if you have some questions?

 

[ohMom]

thanks for the offer -- i have been researching possible causes for an elevated cortisol test along with symptoms i have been having over past 2-3 yrs and a flare-up over the summer. Cushing's makes the most sense to me, but the first endocrinologist I saw dismissed me after 2/3 labs came back normal. I'm going for 2nd opinion in couple weeks and thought if there was anyone here with experience maybe they would be able to give me input on how to approach the dr. I have been frequenting a cushings forum, with lots of great people and info, but it's never a bad idea to hear another perspective.

 

[honugirl]

Yes. I had Cushing's. I had 1 pituitary surgery, then my adrenal glands removed about 4 months ago. It's a way hecka long road. I use a doc in LA and I wouldn't go to anyone else because 99% of endos are morons when it comes to Cushing's. Many pituitary centers are a waste of time too. They don't know jack either. You're going to have to bust your rear and fight for your life. 2-3 normal tests amid high ones is VERY COMMON. Most docs won't acknowledge that. Good luck. You can PM me if you like. I'm currently in school going for a biochem degree so I don't have a ton of extra time, but will try to reply when I can.

 

[ohMom]

honugirl --- thank you! actually i'm heading out of town for few days...but I will PM you when I return, thanks again.

oh wait, i just noticed your cushings-help ribbon, that is the site i've been on. is your user name the same?

 

[CinderelliT]

I was diagnosed with it 3 years ago. The docs believed it was steriod medicine induced and not another problem. So when the weaned me off the steriods, I lost 60 lbs, and felt great - FOR a while.

3 years later, I have gained back the 60 lbs and some, and I have all the typical symptoms again. A year ago I started bugging the endo to test me. I swear I have an adrenal tumor or something along those lines, and that it is not just medically induced. He refused to test me last year.

This year, he agreed about my weight and ordered a dexamethisone cortisol suppression test - just the 1 where I take the pill 8 hrs before and then have a blood draw. The test came back normal - and he thinks that this might be thyroid related as I have Hashimotos thyroiditis. I DON'T AGREE!

I go back to see him in 2 weeks. I'll let you know what he says. Keep us updated on your status too. PM me if you want to chat. It seems like this is the hardest thing to diagnose.

 

[CinderelliT]

You see that pic in my sig in the blue shirt. That was taken a less than a year ago in Nov.

This pic shows my weight gain - all in the belly and the hump in the back - taken 2 weeks ago. Its over 40 lbs in less than a year.

 

[ohMom]

CinderelliT -- it is so frustrating I agree! i have read couple places online where it's one of the hardest diseases to diagnose...great.

this week has been a good week, got to have quick trip to WDW while my DH attended a convention, returned home to an email from my PCP who wrote orders for labs for me finally! yay! now i'm nervous and anxious reading account of folks who test and test and test with lots of normals and highs and how important it is to figure out when you are in a 'high' and test then. I think I'm just going to go for it for round one and see what the results is vs. how I was feeling.

i definately have the stomach/middle weight gain, i gained almost 25 lb in 6 weeks and the first endo I saw dismissed me after I tested normal on the 48 hr dexa. I did test high on the overnight dexa.

thanks for answering, maybe we can get each other through this....

your comparison pix hit home with me, here I am Aug 2009 and Oct 2010