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Susanna N (Susanna Nolt), Pituitary Bio

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Hello! I am a 30 year old single lady diagnosed with Cushing’s in summer of 2015.
I am a Natural Health Consultant and through the grace of God and lots of research, I basically diagnosed myself. My primary care was familiar with Cushing’s and when she saw all the Labs I had ordered on myself, she sent me for an MRI which showed a 6mm pituitary tumor.

I was so excited that at last a REASON for all my symptoms was found! But I had no idea at that point how long and hard the journey would be.

My Cushing’s was fast progressing and I gained 1 lb a week for the last 12 weeks prior to surgery. Plus, I had gained 20 lbs prior to that over the last 2-3 years. Not too mention all the other symptoms of Cushing’s: depression, PCOS, fatigue, weak muscles, thinning skin, hair loss, mental confusion, headaches, etc.

I was referred to Johns Hopkins Hospital in Baltimore MD and I met one of the best pituitary surgeons in the nation, namely, Dr. Gallia. He has a 90% success rate for Cushing’s to date.

After the surgery on Nov 13, 2015, I went thru all the normal cortisol withdrawal symptoms….shaking and twitching, incredible pain and weakness everywhere, headaches, depression and irritability, etc I spent 6 weeks at my parents home after the week I spent in the hospital for recovery from the acute phase.

After moving back to my house, I went back to work part-time the first week in January 2016. Now this May 2016 will be the 6 month mark, and I am discouraged at how bad I still feel most of the time….easily stressed and depressed, pain everywhere (esp spine, shoulders, and neck), forgetfulness, and lots of headaches.

I am still on 7.5-10mg of Prednisone every morning. I was on 15mg when I left the hospital, but every time I lower it, I have another crash. I tried the Hydrocortisone, but that wasn’t strong enough for me. My Dr said that my cortisol levels were unusually high prior to surgery, so my recovery may be longer than average til my adrenals start producing cortisol.

So I’m trying to be patient…The good news is that I’ve lost 13 lbs and 4″ around the waist, so I need to be grateful for that when I feel depressed. I am anxious to hear from others who are on the “Cushing’s Journey”. It seems that in some ways I am worse now than I was a few months ago. I have days when I just feel like crying and the pain is intense!

Do others have migraine headaches several times a week? Are your menstrual cycles crazy and debilitating? Hopefully we can learn from and encourage each other!!

God bless each of you!

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Cushing’s Disease and how a brain tumour made me fat. | Skeptical Artist

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The author of this blog post is a member of the Cushing’s Help Message Boards.

…I’d been feeling a little off colour and had put on a bit of weight so went to the doctor at the beginning of last year (2012). In September 2011 I’d been running and blacked out. Through the rest of the year even though I was careful about what I ate, was swimming 80 lengths of the pool everyday and running pretty regularly I was still gaining weight. It’s weird that I found it hard to climb the stairs at work because my thighs felt so weak but could still swim a couple of km. I found it difficult to sleep and bruised pretty easily.

It was a bit of a shock to be told I might have a very rare brain tumour releasing the hormone cortisol that affects 10 in a Million people. Things went downhill and Cushing’s Disease really started breaking apart my body. My muscles wasted and I carried on putting on fat. Joints skin and feet were all affected. I’ve heard Cushing’s Disease called the ugly disease so yep not great…

Read more at Cushing’s Disease and how a brain tumour made me fat. | Skeptical Artist.

Lajla, Adrenal Bio

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Hi!

My name is Lajla, born 1967, in Umeå, Sweden. In August 2012 I was diagnosed with Cushings Syndrome (adrenal). My health status by this time was terrible, with almost every part of My body affected – i.e. Heart, lungs, kidneys, brain, skelet, muscles, skin and a heavy weight. The very first time, I believe, I had symptoms fr.o.m. Cushings were in 2004, with adrenal pain and kidneys that reacted in a strange way. Tests results gave no clue. After that I’ve seen a doctor for several times, with new symptoms every time. The doctor didn’t believe me.

Summer 2012 I was in a very bad shape, with anxiety, fractures, insufficiens in both lungs and circulatory. I went to see another doctor, and that saved My life! In september 2012 My left adrenal gland (and the adenoma) was taken away. The result is called “very successfull”. Many of My problems are gone (or at least nearly). The weight is now normal, after the loss of about 92 lb. I still suffer from pain due to the many previus fractures and from the atrofia of the muscles. I also have adrenal insufficiens and fatigue. I can now do some easier work (that not needs muscles). For the first time since the ectomia I’ll have a real vacation! In about a week I’ll visit New York, something that I never thought would be possible!

Feel free to correct My english!

This site is the best for me to get information about Cushings. In Sweden there is none!

Thank you! 🙂

Lajla L

Port woman optimistic in fighting her ‘ugly disease’

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Anyone who knows lifelong Port Jervis resident Katie Onofry Sandberg knows that her upbeat personality does not let much get her down. Despite a life-threatening illness that she was diagnosed with as a teen, the cheerful young wife and mother says she loves life and is always aware that there are others who have it much worse. She is grateful for the support of her family, friends and community as she continues a strenuous course of treatment to fight the disease.

A benefit dinner attended by more than 200 was held recently at the Erie Trackside Manor to assist the Sandberg family with mounting expenses and to show support as Sandberg’s treatment continues.

Sandberg has Cushing’s disease, caused by a tumor on her pituitary gland, which releases too much adrenocorticotropic hormone throughout her body.

“I call this the ‘ugly disease’ because it causes major weight gain in your stomach and face, stretch marks, weak muscles, scarring, pigmentation issues, acne, increased facial hair, and loss of hair on your head,” Sandberg said. “The worst is when I have a hard time holding my baby girl, or not having enough energy to play with her. I do push myself, but majorly pay for it in the end. This can affect you emotionally and cause depression and anxiety, but I get a lot my optimism from my dad and have learned to deal with it.”

Sandberg said a biopsy taken during an eight-hour surgery in 1999 failed to find the tumor and caused her symptoms to spiral out of control. Extensive research and persistence on the part of her mother, Sue Onofry, led her to Massachusetts General Hospital. It was there that the disease was diagnosed in June 2001, the same month that then 18-year old Sandberg graduated from Port Jervis High School.

After successful transsphenoidal surgery a few months later, the tumor was removed and Sandberg was placed on steroids for adrenal balance.

“Seven years later, in 2008, I got off the steroids and was considered cured for the time being,” Sandberg said.

Over the next years, Sandberg earned an associate’s degree in business administration from SUNY Orange and CDA certificate from Keystone College, completed schooling in graphic design from the Art Institute online, worked in early childhood education and in public relations, owned Kate’s Cafe in downtown Port Jervis, married, and became a mom.

 

“I truly married my best friend. I had known Joe (Sandberg) since high school, but started dating in 2007 and married in 2009. They say you always marry a man like your father. Well, I definitely did in so many ways. He is so hardworking, supportive, and would do anything at all for his family,” Sandberg said. “Then, although I had been told that there was a high chance I would not be able to get pregnant, our miracle occurred. Ella Grace Sandberg was born on July 25, 2011.”

Over the past year, Sandberg’s symptoms returned. Cortisol tests came back in the 600s — a normal range is 18-50. In February, she underwent a second transsphenoidal surgery, which this time was unsuccessful. She was then placed on medicines to help regulate her cortisol levels. She will complete a six-week proton radiation treatment May 23.

“So far, the medicine treatment has been regulating me, which is great, and the radiation has a 95 percent success rate. The only hard part is that it is not immediate. It can take anywhere from one to ten years to work and kill the tumor cells. The key word with Cushing’s is patience,” Sandberg said. “About six months after treatment is finished, I will start testing to see if there is any improvement and to monitor my other hormone functions due to the effect of radiation on my pituitary gland.”

Having the young mom in Boston for so many weeks of treatment has been tough on the family. She said she greatly appreciates daily contact from her friends and family members, and is grateful that her daughter is being cared for by her husband, parents and in-laws.

“I could never have done this or continue to do this without them,” she said. “I am truly blessed.”

For more information on Cushing’s disease, Katie Onofry Sandberg recommends the Cushing’s Research Foundation  and she would be glad to answer questions herself at Kosandberg@gmail.com. She hopes that by sharing her story, she might bring awareness and possibly help for someone else.

From http://www.recordonline.com/apps/pbcs.dll/article?AID=/20140516/COMM011101/405160302/-1/NEWS

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Lajla, Adrenal Bio

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I’m a woman of 45. Since 2007 I`ve carried a lot of strange symptoms. My doctor didn´t believe in me.

I met a new doctor in july 2012. He saw immediatly what was wrong.

Surgery in september 2012. That was the start of a new life.

The health is much better now although I have pain in my muscles, skeleton and  leads.

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