Home

Surviving Cushing’s: Area woman hit by rare disease

Leave a comment

Gina Gregoire Helton is certain if she had a dollar for every time she has heard the word “rare,” she’d be a rich woman.

She has a lot to be thankful for. She’s been married to Sean, the love of her life, since 2011. She has a warm, gregarious family consisting of eight sisters, three brothers, over 30 nieces and nephews and two loving parents, Charles and Denise Gregoire of DeWitt.

But in April 2012, Helton started to experience disturbing symptoms. She had sudden-onset hip pain. A few months later, she had unexplained hair loss and breakage. Deep, red and purple stretch marks, also known as striae, started appearing on her skin.

They were painful and she credits them for essentially saving her life.

“They were the ‘red flag’ that something was definitely not right,” Helton says.

She went to see her doctor, Dr. Jennifer Bell at Genesis Health Group in DeWitt, who admitted she was stumped. Yet, based on the presence of the striae, Bell wanted to test one more thing – Helton’s cortisol levels.

Cortisol is a life-sustaining adrenal hormone that influences, regulates or modulates many of the changes that occur in the body in response to stress. Those changes include blood sugar (glucose) levels, fat, protein and carbohydrate metabolism to maintain blood glucose; immune responses; and anti-inflammatory actions.

As it turned out, her levels were abnormally high. Bell referred her to a specialist in the endocrinology department at University of Iowa Hospitals and Clinics (UIHC) in Iowa City. Cortisol levels fluctuate throughout the day, but further testing showed Helton’s levels consistently remained extremely elevated.

That was the first time she had ever heard of Cushing’s disease.

Helton had nearly every single symptom of the disease that affects less than 200,000 people in the United States.

In addition to hip and back pain, hair breakage and stretch marks, she suffered from moon face, frequent bruising, depression and anxiety, weight gain, frequent urination, high blood pressure and muscle atrophy.

“I was extremely relieved to have a diagnosis,” Helton says. “At the same time, I was scared as I started to learn more about Cushing’s disease and what it can do to your body. There are people dying from this because of improper diagnosis. I was blessed my doctor at UIHC was educated on the disease.”

Most individuals diagnosed with Cushing’s have a tumor on their pituitary or adrenal glands.

Helton’s tumor, however, was located on her lung. Fortunately, her doctor decided to scan that area of her body and discovered the tumor.

In November, Helton underwent surgery to remove the tumor in her chest. However, during the procedure, some microscopic-sized tissue was left behind. So, in January, she found herself in the operating room once again. However, in order to get rid of the remaining tissue, the surgeons’ only option was to remove Helton’s entire left lung.

The situation went from bad to worse when it was discovered the tumor was malignant. It was a very rare tumor called a carcinoid tumor. These tumors are slow-growing cancers that typically start in the lining of the digestive tract or lungs.

After they took her lung, doctors noticed the cancer had spread to her lymph nodes. Members of the oncology department recommended chemotherapy and radiation as treatment.

Because her particular condition is so rare, doctors cannot say definitively what Helton’s prognosis is. Living with only one lung, her physical activity is restricted. Yet, Helton is partaking in water exercise to help ease the pain in her hips and keep her muscles strong. While climbing the stairs is a major obstacle, she intends to participate in the next Fight for Air Climb in Des Moines sponsored by the American Lung Association.

It may take her longer to reach the top than most, but she has made it her goal to finish.

Helton also plans to become an advocate for the Cushing’s disease community. She has yet to meet anyone else in person who suffers from the condition, but has connected with hundreds of them through social media.

In particular, Helton has made contact with Dr. Karen Thames from Chicago. She has been diagnosed with Cushing’s and is working on a documentary called “The War to Survive Cushing’s Disease.”

Helton says the experience has dramatically changed her attitude and outlook on life. She no longer “sweats the small stuff” and her relationships with her loved ones have become stronger.

As for people who are experiencing any of the symptoms associated with Cushing’s, Helton encourages them to seek help.

Even if there are no immediate answers, don’t give up.

“If you are experiencing something with your body that doesn’t seem right, keep seeking help. There is a doctor out there somewhere that will help you. We all know our bodies and when something is wrong.

“My faith and relationship with God has grown tremendously. I count my blessings daily. That is the silver lining. My favorite quote is, ‘Everyone you meet may be fighting a battle you know nothing about. Be kind. Always.'”

via Surviving Cushing’s: Area woman hit by rare disease.

Janice B (NotSoCushie), Pituitary Bio

Leave a comment

The pituitary gland

The pituitary gland

 

Hi All: I had Cushing’s with a pituitary tumor. My endo always said I had too many symptoms. He said he could isolate the Cushing’s symptoms, but he was still left with a handful of other symptoms unrelated to Cushing’s, so he thought I had something else in addition to Cushing’s. But he said, one thing at a time.

I had the transf….up the nose surgery to remove the tumor on 3 April/2013. Successfully removed, however the surgeon nicked the pituitary gland and now I have adrenal insufficiency and take 5mg prednisone for life.

Then the something else turned out to be uterine cancer so I had an operation on 28 Nov/2013 for that. I am feeling my old self.

Last year was able to walk playing 9 holes of golf. This year goal is to walk 18 holes of golf. Today I consider myself Not So Cushie and am grateful for each day I have of good health.
I am writing my memoir: IT WAS THE GREATEST LOVE STORY EVER and have completed a one-person play of the same name based on the memoir. If anyone is interested in following my progress on these two things please see my website:janbarrett7.wordpress.com.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Michelle B (Mshelle), Cyclic Cushing’s Bio

5 Comments

Hello all, I’m Michelle mother of 3 beautiful children, I work part-time, 33yrs young, non-smoker, non-drinker, overall health is good for the most part…..Where do I even begin.

I just recently received the diagnosis of cyclic Cushing’s. I’m not really sure how long I have actually had Cushing’s because I have had a diagnosis of PCOS since I was 17 yrs. old ( I’m now the ripe young age of 33). However looking back through labs with my endocrinologist who I see every 6 months, my ACTH levels have been elevated for a bit over 1 yr. It was not until recently January of 2015- things were going terribly wrong.

Starting in January I started to feel genuinely unwell, on a regular basis. I cant really explain all my symptoms there were so many different sensations and feelings that were seemingly different daily. However the red flag was I was having blood pressure spikes from really high, to very low back to back. I never had any blood pressure issues so this was a concern that led me to see a cardiologist. Upon tons of testing the cardio MD felt that something was telling my otherwise very healthy heart to do this and I should see a endocrinologist. (thank goodness for him) I contacted my endo and let him know…. the testing began.

I did every test: the midnightcortisol saliva test, dex suppression, 24 hr urine test, CRH stimulation testing. And I did them more than once. Each time it was a different response either, inconclusive, normal high, or high. I was then referred to the head of the Cleveland clinics pituitary department Dr. Kennedy. He said he is having a hard time believing when he looks at me that its Cushing’s. However all my labs say it is. I will say I do fit the mold of PCOS to a tee- which symptoms of that do coincide with Cushing’s but he still said we have to be sure its Cushing’s. To add to the mix I did have a normal MRI as well.

Dr. Kennedy started me on a 2 week midnight cortisol saliva test- Upon completion we noted levels of cortisol all over the place, some Normal, normal on high range, high, and really high. He confirmed with all the other tests this is Cushing’s. Now we are trying to figure out what is next…. and where is this damn little tumor at. he feels that it is most likely in the pituitary from my test results, but we still are not ruling out else where. He is thinking that the next step would be exploratory neurosurgery or the IPSS. I’m not sure what to think of all this, except I want to hope for the best like everyone- and just be cured!!

On a side note during all of this I also had episodes of severe pain in my chest and nausea. I went to see a GI who did an upper endo scope. They found I had eosinpphilic esophagitis. I also have never had any GI problems until now; and they came on suddenly. Im also having pain in my pancreas area- not sure if any of the two are related at all to Cushing’s. But once again I was fine until recently with all these issues at once it seems.

wish me luck on further testing, treatment, and ultimately a CURE!!

interview

Michelle was our guest in an interview on BlogTalk Radio  Wednesday, May 13, 2015

The archived interview is available now through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. There are currently 83 other past interviews for your listening pleasure!

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Gabby (nielk), Steroid-Induced Cushing’s Bio

Leave a comment

steroids

 

I have been diagnosed with rheumatoid arthritis in 2013. I have been on methylprednisolone for about a year and a half now and have all the symptoms of Cushing’s Syndrome.

My doctor wants to get me off the steroids but so far none of the other RA medications that I have tried have worked. It has been pretty frustrating.

I can’t get off the steroid but it is making me sicker in other ways.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

In Memory of Natalie ~ April 21, 2008

3 Comments

This is another Golden Oldie.  I’m not sure when it was last written or updated by Natalie but it was updated by me after she died April 21, 2008.

~~

Hi! My name is Natalie, I am 35 years old and I’ve been married for 15 years. I don’t have any children at this time, but we are in the process of adopting. We can hardly wait for our little one to show up on our doorstep. We live down in southern Maryland at this time. I grew up in southern Virginia on a farm. My Dad is still farming; he raises peanuts, corn and soybeans. He has had 2 battles with colon cancer and is still hanging in there. He gives me inspiration. I have my Mom and Grandmother still living home on the farm too and we get there as often as we can. My sister lives near by my parents and has 2 boys. They spend a portion of every summer with us.

There is so much to tell, I really don’t know where to start. I had my official diagnosis in Jan. of 1990. But after all of the information I have learned over the years, I fully believe that it could have started as early as childhood. We will never know for sure.

When I graduated from high school in 1983, I was a happy go lucky teenager with a steady boy friend and many friends. My first year of college was great. I had a lot of fun and thought I had made so many new friends. Joe (boyfriend then, now my husband) left for Marine Corps Boot Camp in the spring of 1984. That was hard but I adjusted fine and was glad to see him come home that summer. In the fall when it was time to go back to school I was a different person. I withdrew from my friends and I pretty much kept to myself. After a weekend visit from Joe, I slipped into a deep depression. I stopped going to class and to work. My so-called friends didn’t want anything to do with me. I started having headaches and dizzy spells. I was really scared. No one knew what I was feeling or would even try to understand. I ended up dropping out of school and went back home. I didn’t want a job; I just stayed home and did baby-sitting jobs. My nephew was born in August of 1985 and I took care of him full time until Joe and I was married in June of 1986.

On our wedding day I cried all through the picture taking. I was very happy but cried anyway. We went to the Blue Ridge Mountains for our honeymoon, I got stung by a bee, got a speeding ticket, and we had no air conditioning in our truck. It was truly one to remember. We came back and moved to North Carolina, where Joe was stationed at the time, and I cried for the next 2 weeks. I had never been that far away from home before.

As a child I had a bad case of asthma and now all of a sudden I’m having no problems. Little did I know that my body was treating itself with cortisol. In Jan. of 1987 I had a doctor’s appointment with my Allergist.

I was told then that I had High Blood pressure and to keep check on it. I was also beginning to be very emotional around this time. I would cry over nothing.

I started having migraine headaches while Joe was away on a deployment. My parents came and took me to the ER and because I had not been able to eat for 3 days and I was living in the dark because the sunlight was killing my head. Again I was told that it was High Blood pressure. Joe came home and left again in June for 6 months on the ship. I moved home and didn’t have any problems that summer. I moved back to Carolina in the fall so that I could get our house ready for Joe’s home coming. The real nerve racking part was that Joe’s ship was part of the mine sweeping going on in the Persian Gulf during 1987.

1988 was a pretty good year. Not too many problems except for headaches. But 1989 is a different story. I fell apart this year. In the spring I broke out in this strange rash that wouldn’t go away and I couldn’t find a doctor that could tell me what it was. Not long after that my periods stopped, we were really excited thinking that we were finally going to have a baby, WRONG! I went 3 months without a cycle; I still had the rash, headaches and high blood pressure. You would think that this would have alerted my OB GYN that something was wrong. Joe came home one day and found me doubled over and took me to the ER and we found out that I had kidney stones. Over all this time I am steady gaining weight. The stones passed and then tests were done and everything was fine there. Finally I decided to go to see Dermatology for the rash and was treated for severe acne. On my second visit with them the doctor took a look at my entire medical record and excused himself from the room. A few minutes later he returned with a doctor from Internal medicine, he took one look at me and said that I was the classic Cushing’s case. Then he went on to explain it to me. This was in Nov.1989. The tests began and I had a CT Scan done in Dec of that year that I didn’t get the results from until after Christmas. They showed a tumor on the pituitary and I was told to go to Portsmouth Naval Hospital right away. We took off and headed to Virginia not knowing what to expect. I was admitted the next day and had a week of peeing in a jug and lots of bloodwork. I was sent home with my surgery scheduled for Feb. 1990. Well, being the Navy, my surgeon was called away and my surgery was delayed until March.

I had transphenoidal surgery in March 1990 and they removed what they could but it had invaded the sinus cavity and they couldn’t get it all. I was sent home on hydrocortizone and had 2 episodes where my cortisol levels dropped too low and had to go the ER. Once I was weaned off I was okay and actually felt pretty good. I had monthly 24-hour urine tests run and they began to come back high again. I was put back in the hospital in Portsmouth and all the tests came back normal. I was sent home and a couple of months later they were high again. Again I went to the hospital and sent home normal. What’s going on here? The next time this happened I demanded that something be done. The head of the Endo dept. (I won’t mention any names, but Handiman knows him personally) tried to tell me that I was faking it so that my husband wouldn’t have to go the Desert Storm. I talked on of the interns to schedule me for an appt with the radiation oncologist and they determined that the tumor was still growing and that I needed to have radiation. Joe was scheduled to go to the desert but he was pulled from that duty and assigned to recruiter’s asst. and we moved to Virginia to my parent’s home for 60 days while I underwent 31 days of traditional radiation to the pituitary. I went back to Carolina feeling more at ease that something had been done. The rash went away but I continued to gain weight and still had Blood pressure problem, but was now being treated for it.

I was doing really well and Joe went away again for 6 months in Oct.1991. He was gone that Christmas, which was hard but I handled it ok. When he returned he had orders to go to Atlanta, GA. I was doing well and we packed up and went. I didn’t like the endo I saw there so I continued my 6-month check ups in Portsmouth when went home to visit.

In the summer of 1994, I started having problems with my left eye and thought it was allergies. I went to the eye doctor and after examining me he sent me to a Neuro Ophthalmologist who ordered a MRI and guess what The Tumor’s back! It was pressing on the optic nerve causing what they called a third nerve palsy. I was treated with medication until Jan 1995, hoping that the tumor would shrink but it got worse. I began to have double vision and my left eye closed completely. In the spring of 95 I again underwent Transphenoidal surgery at Emory University under  Dr. Oyesiku. He was great. I also had a great endo there, Dr. Lewis Blevins (he is at Vanderbilt in Tenn. Now). They still could not retract the entire tumor so I went back in August of that year and had Sterotactic Radiation Surgery. That was a one time radiation and it was a real experience. I had a metal Halo drilled into my head and I had CT scans and MRIs done with it one to determine the exact location of the tumor, then I was placed in a chair that spun in very slow circles while the radiation was being done. When I arrived back in my room they couldn’t find the key to take the halo off, so I had to wear it for another 2 hours until they found it.

It has now been almost 6 years since the last radiation and my current MRIs show some shrinkage of the tumor. I am currently battling high cortisol levels again but I think if we can find the right dosage of medicine it will level off. I am currently taking meds for: thyroid, high blood pressure, estrogen, diabetes, medication to control cortisol, allergy medication and every 3 months I take hormones to make me have a menstrual cycle. But over all I am doing OK.

My husband is out of the Marine Corps now and we live in Maryland. We are in the process of Adopting. We are really excited about this and can hardly wait to get our little one. My husband and Family have been so supportive of me through all of these years and I don’t know what I would have done without them and my close friends.

I feel like I have made many friends here also. This site has been a great help to me and I hope that my story can help someone else.

Take Care everyone!

Natalie

MaryO Note: Natalie had a BLA in March, 2008. She died April 21, 2008.
In Memoriam

Natalie Fay

Monday, April 21, 2008

2001 Cushing’s Lunch. From
left: Joe (Natalie’s husband), Natalie and Linda

Natalie Fay (Natalie65), died April 21, 2008. She was only 42 and had recently had a BLA. I first
met Natalie at a local lunch in November of 2001 and have seen her seval times
since then.

Natalie started the original “Dammit Dolls” that circulated
around the country until people refused to pass them along anymore.

Dammit Doll.

Natalie also made counted cross-stitch
Cushing’s Awareness Pins:

Natalie’s bio… http://www.cushings-help.com/natalies_story.htm

Some recent past
posts.

February 10, 2008

going to UVA I am going for my first visit with Dr. Hanks at
UVA on the 20th. I will also see Dr. Vance that day. I haven’t seen her before
either. I am planning on having bilateral adrenal surgery in March. I am a
little nervous about this, but it is going to be a positive thing I hope. I
would love to hear from anyone who has had this done so that I will have an idea
of what to expect. after surgery.

Thanks! Natalie

March 18, 2008

surgery update Hey everyone!

I’m back! It has been a
very slow week and I’m just satrting to feel like moving around again. I had BLA
on the 10th and came home on friday. My parents have taken my boys (3 & 6)
home to Va. I have missed them so much this week, but I think it was the right
thing to do. I don’t know how I would have done it without them. I am still very
sore and tired at times, but I’m coming along. Sorry this has taken so long to
get out to you guys, I thought things were taken care of but I was wrong. Oh
Well! I’m doing good and I’ll keep in touch. Thanks for all of your thoughts and
prayers.

Natalie

Message Board Signature:

pit surgery 1990
traditional 30 days
radiation 1990
pit surgery 1995
sterotactic radiation surgery 1995
2004
still have remaining tumor
cortisol levels still off balance
BLA March 10,
2008


Tributes and Memories on the message boards…


Our first local DC area Cushie lunch November 17, 2001 with Linda, Jayne, me and Natalie – all in Cushe Colors [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: TomO]

Our second local DC area Cushie lunch February 9, 2002 all the families [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO. LynneInVa made the roses for us from candles. [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: TomO]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Joe, Jed and Catherine [Photographer: Robin]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

TomO being silly, stealing Catherine’s nose. [Photographer: Robin]


http://www.wrightfuneralhome.org/index.cfm

Natalie Grissom Fay
(June 11, 1965 – April 21, 2008)


Guest
Book
| Sign
Guest Book

Courtland, Virginia– Natalie Grissom Fay, 42, passed away April 21, 2008 at St. Mary’s Hospital in Leonardtown, Md. She was born in Petersburg, Va, a daughter of Edward Scott and Nan Lucy Grissom and was a 1983 graduate of Southampton High School. Natalie actively supported several Cushing Support Groups, and was a member of the Patuxent Presbyterian Church. Surviving in addition to her parents is her husband, Joseph P. Fay; two sons, Joseph Edward (Jed) Fay and Nathan Lee Fay all of Hollywood, Md.; one sister, Annette G. Stephenson of Courtland, Va.; two nephews, Scott and Vance Stephenson; and her father-in-law, Edward K. Fay and wife, Sunee, of Deltona, Fl. The funeral will be conducted at 2 pm Friday at Wright Funeral Home with the Rev. Edmund Ellis officiating. Burial will follow in Riverside Cemetery. The family will receive friends from 7 to 9 pm Thursday at the home of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, and suggest that in lieu of flowers, memorials may be made to Cushings Help, c/o Mary O’Connor, 4094 Majestic Lane, #328, Fairfax, Va. 22033.

Kat S (kat) Madelung’s Disease

Leave a comment

I’ve just been diagnosed with Madelung’s Disease.

I am a 52 year old female, who doesn’t drink alcohol. Not typical of this illness. At first I was so relieved that I didn’t have some type of cancer that spread into my lymph nodes.

I am still thankful this isn’t really life threatening. I know it may be a difficult journey.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

In Memory: Diane

Leave a comment

in-memory

 

My name is Amy and my very best friend just passed away from an adrenal crisis. Diane was unaware that she had any adrenal issue.

She seemed to have gotten sick on Sat. and was passed away by the morning. After 45 days of an autopsy, it was determined that her adrenal glands were “wasted” and she had an adrenal crisis and died.

I am looking for a better understanding of what this is all about.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Older Entries

%d bloggers like this: