I’m a 19 year old male student with Cushing’s syndrome. Basically had accelerated weight gain since late 2011, despite frequent exercise and heavy dieting.
Started to feel a lot more irritable and tired, lost strength at the gym, developed big unsightly purple stretch marks across my abdomen
Initially my doctor just told me that I was getting fat and should do more cardio/eat less. She even commented on how it showed quickly in my face (mild moon facies)
It was entirely reasonable for her to think this, but when the stretch marks didn’t fade as they normally would i did a google search and returned.
Urine test, blood ACTH and cortisol test, repeat urine test. Soon I was sent to an endocrinologist who confirmed Cushing’s syndrome.
I just had an MRI of my pituitary after the ACTH signs pointed to a pituitary source. The Endocrinologist said it appeared to have a 3mm lesion, but it was not 100% conclusive so I am to undergo petrosal sinus sampling for confirmation within the month. Hopefully that will confirm the adenoma with surgery ideally soon after that.
I’m happy to have got it reasonably early; most of my symptoms are still relatively mild, but it really does make you put other things on hold until you can fix it, which means i’m sort of stuck in a lull until its all fixed. I would appreciate any advice for things to do in the mean time to help me feel like i’m doing something positive rather than just waiting.
Location of the pituitary gland in the human brain (Photo credit: Wikipedia)
May 03, 2013 @ 21:38:31
Jarryd, It is great you are getting this taken care of early! As I am sure you have read that the vast majority of folks with a pituitary tumor get completely better after the first surgery, for it never to return. This is my hope and prayer for you! You don’t see a lot of stories like that on the Cushing’s web site, I think because those folks got to go back to their regular lives! I just wanted to remind you of that so we “old Cushie’s” don’t get you down. Good Luck! and let us know how great you are doing afterwards, so we can share your joy!
May 03, 2013 @ 22:51:09
I am so sorry it seems there are so many in the medical field, that fail to recognize the symptoms! Horrible symptoms and other than the weight gain, no one sees what you are really feeling. Prayers for your quick recovery and better health!
May 04, 2013 @ 01:06:35
From Facebook: “Jarryd, My husband had some of the same symptoms as you. He had the PSS as well as 3 transphenoidal surgerys and his adrenal glands removed. He has been through hell but at 64 is now doing great except for some osteoarthritis and due the osteo a lot of back pain etc. but so fortunate to be with us.”
May 04, 2013 @ 04:04:27
hey, i also had my transphenoidal last july 13, 2012…. but as of now, it seems that i am not get any smaller/ thinner.. im still always feeling sleepy at around 7 or 8 in the morning. ive done acth, urine cortisol test. . . im planning to have an mri again of the pituitary gland next month. . .. any way, im hoping for your fast recovery.
May 04, 2013 @ 18:17:11
From Facebook: “Jarryd you will get through this and life will be wonderful.”
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Feb 29, 2016 @ 14:31:45
Wow. I have been feeling off for months. Weight gain like 2 years ago. Just in my middle and my mother in law asked if I was pregnant. I was not so ouch…
Last past year I have been even more moody and fighting weight gain. Now I weigh 193 and used to weigh 155 and model. I also have the moon face. Very light on the stretch marks on side. All the doctors were telling me just to exercise eat healthy and it was just stress. One finally did blood work when I went in feeling like hell warned over. Weak shaky and depressed. Referees me to thyroid doc. Thyroid doc said thyroid looked fine and maybe it was just me eating healthy exorcise and too much stress. However he wanted to do one test. Dexamine suppression test. Had high cortisol. Went to endocrinologist Dr. Utz Nashville TN
Took more tests, 24 hour and saliva. Both high on cortisol. MRI showed 4mm microadenoma. So now I am same boat as you waiting on results of recent IPSS procedure they did last Friday to make sure the spot on my pituitary is the cause.
Basically stay strong and you can do it!! After months of people telling me it’s all in my head (even my own husband poor guy) I finally know that it wasn’t just stress. I find out there are a lot of other people suffering like us and makes me feel good to know there are things like these bios to get us through.
Know you can do this and try to take it day by day. I fight anxiety 24/7 and also have continuous tremors. So talk about me being impatient to get through this and back to the old me
The worst about cushings is the emotional mental hit you take. Just remember that you are not alone and God knows exactly how we feel. He is there by our side getting to the right doctors and through this.
You totally got this. Give it time and eventually this will all be s bad memory. Luckily yours is a microadenoma so they should be able to remove it and low chance of it coming back.
I send out my support to you and you are in my prayers. You got this!!! 😉