Diagnosed with cushings syndrome, right adenoma. Reviewed right adrenalectomy after 3 years of being bounced from doctor to doctor. Diagnosed with high blood pressure, high cholesterol. Hair loss, intense itching, bruising, weight gain, depression and osteoporosis, eith multiple fractures, torn ligaments and tendons.
Finally after researching a medication that one endocrinologist put me on for the osteoporosis I found another endocrinologist in NY at colombia presbyterian hospital that specializes in premenapausal idiopathic osteoporosis and this medication. I got an appointment with her.
On one review of my history she sent me for 24 hr urine cortisol which came back through the roof.
She then refereed me to their adrenal specialist had a CT scan which revealed a 3.5cm maas on right adrenal gland. Had surgery the next week and am now 4 weeks post op.
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Feb 11, 2016 @ 06:53:12
Hi Toni I too had a adenoma on my right adrenal gland and am 4 weeks post op and feeling pretty damn awful! On hydrocortisone and waiting to see if the other adrenal will wake up!
Mar 24, 2016 @ 06:21:02
My adrenal gland and pituitary gland are still sleeping, I still feel crapy, but the crapy I feel now is still better than prior to surgery. I’m hoping that eventually this will all be in the past. Hope you have a speedy recovery
Aug 07, 2017 @ 18:33:28
I just had surgery on Friday and had left adrenal removed. I just got home today ( Monday) and I must say I expected it to be much worse. I was able to climb my 3 flights of stairs and yes I got winded but I did it. I’m also now on prednisone and will see my endo in a month to change dosage. It’s hard to find info anywhere about this soceiuld love to hear from others that have gone through this.
Aug 10, 2017 @ 12:23:09
Hello, I had my right adrenal remove over 22 years ago, I was 32 years old with a 2 & 4 year old. I, like so many, was misdiagnosed for about one year, felt horrible all the time, gained 30 lbs in one month, while having two weight loss shakes a day & doing aerobics for an hour everyday. Hair loss high blood pressure, thyroid issues, fat in all the wrong places, as well as feeling I must be loosing my mind because doctors seemed to not believe me, diagnosed depression,(repeatedly) so frustrating when you feel like something’s wrong and no one can help.
At my moms insistence, I saw her endro (she is diabetic), he knew immediately, by my appearance, then confirmed with testing, MRI, & ultrasound. Had surgery within 2 weeks of confirmation of adrenal tumor. Thankful for a doctor who understood & helped me!!
After a year of steroids, I’ve been fine!
I have recently began having panic attacks & feeling anxious, I attribute it to living with one adrenal gland, although testing at my new endriconologist does not confirm ( my hero doctor has retired)
I want to try adaptogens, but he won’t recommend, so today I took my 1st maca root supplement. We will see how that goes. Tired of feeling tired, overwhelmed, etc.
Aug 10, 2017 @ 16:16:33
Hi Teri. So glad you wrote. There are not many people to share this with. So you have lived a normal life for all these years? That is great. I was scared on how long it would take me to be normal after surgery. Tomorrow will make a week. I am weak but Less than I thought. I do see that I get anxious quickly and get hot flashes when I try to focus on something. I hope thus goes away because I’ve always been great at multitasking. It makes me nervous that I won’t be myself again. You give me hope. Please give he any words of advice you think would be helpful. My actual email is gaber_53@yahoo.com. Thanks!
Aug 10, 2017 @ 16:49:33
Vicky, I just wanted to let you know that there are lots of people to share with on the message boards at http://cushings.invisionzone.com/
Best of luck to you!
Aug 11, 2017 @ 10:06:43
Thank you Mary. I’m going to check it out.
Aug 11, 2017 @ 10:04:25
Hi Toni. When did you have surgery? I have a question about your intense itching. I too have itching, specifically in one area. No one could figure out why. Once they figured out I had cushings j asked if the itching could be from that. Doctors have told me it’s not really a symptom of the syndrome. Did your itching go away after surgery. I’m hoping mine does. Today makes a week since surgery I feel I’m less itchy but it is still there. Would love to hear from others when it comes to itching. Thanks.
Oct 22, 2017 @ 16:24:04
Hi Mary. I had adrenalectomy in December 2015. I am currently still on steroids. My other adrenal gland is taking a long time to recover, but I’m half way there. My am cortisol is 5 I need to be at 10. Due to the long time my doctor tends to feel I had bushings for almost 7 years prior to diagnosis. But yes the itching went away completely. I know there is hardly any info on itching, I think I read in 2 different articles out of 100’s that some people itch. Well I itched myself raw. I would just constantly feel itchy no matter what , it drive me insane along with all the other symptoms. I would cry cause I couldn’t stop. The only thing that eased the itch was tea tree oil. I would do it on cotton and literally rub it all over, my husband couldn’t stand the smell of me lol… but that with a daily zyrtec. All though I still itched it took the edge off and I would say by maybe 2 months after surgery I was itch free. But I do remember like a week or 2 immediately after surgery I had a day or 2 of intense itching and then it stopped.
Oct 22, 2017 @ 16:26:20
Also, I hope your doing well, I see you recently had surgery.
Oct 22, 2017 @ 17:27:01
Hi Toni. Thanks for responding. I see you are one of the few itchers out there. Lol. It has been almost 3 months since my surgery and I am getting better. Thank you. The itch has improved tremendously though I get it at times. I do feel that my muscles are constantly aching like if I had run miles. Each day I see some of the cushings symptoms leaving me which is great. In a few weeks I get tested to see where my levels are. Right now I’m slowly weaning down on cortisone. I started with 20 morning and 20 afternoon. I’m now at 15 morning and 10 afternoon.
Oct 22, 2017 @ 17:47:24
I was in a lot of muscle pain. For a good year and a half. I would lay at night in bed and my legs would throb ughhh it was horrible. My body hurt all the time. I take prednisone because I worked night shift at the time and my sleep cycle was off so I couldn’t take hydrocortisone. I am now at 4mg daily and ok. In started at 10. Each time my dose gets lowered it takes time for me to adjust and I exoerience the symptoms of withdrawal such as lethargy to the extreme, like in the middle of cooking diner I will go to bed cause I’m too tired and the muscle aches and pains. So for now i just go dor blood work every 3 months to monitor. I feel like I will never be 100% as I was prior but I’m good so it’s ok. If you have any questions feel free to email me bhiggstbk@msn.com just in case I don’t see this post.
Oct 22, 2017 @ 17:59:29
Thanks Toni. I totally get what you are saying. The doctor comapres weaning off to someone who has been a drug addict for years and is now trying to stop lol
Its funny because people ask how mi feel and when i tell them better they think great. But what they dont realize is every time i change dosage new symptoms arise and i feel like crap. I know it needs to happen in oreder to get to the end, but it sucks!!!!
Oct 24, 2017 @ 16:55:09
Debbie Farthung
I had pit tumor removed but my own natural cortisol never kicked it after and I ended up with adrenal insufficiency. Working on a special eating plan to take ALL STARCHES out of my diet cleaned up my insides and got my adrenal glands functioning again four years after the surgery. My endo confirmed I no longer have adrenal insuffficiency. If you are interested in learning about the diet contact me I’m Janice Barrett aka NotSoCushie.