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Right diagnoses, drugs help woman return to normal life

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You could almost say things have returned to normal for Patricia Kleinhoffer in her family’s home, if there was a such thing.

What with living in a house with her husband, mother, brother, and four of her five non-biological children, things tend to get a little hectic, Patricia said.

“There’s no such thing as normal in this household,” she said.

But that’s just fine with Patricia, who welcomes the chance to spend more time with her family — that is, while she’s not working on her master’s degree.

Gone is the need for a nap every few hours; gone are the debilitating migraines; gone are the anxiety attacks that make it difficult for her to leave her home.

Those symptoms, a result of the Cushing’s syndrome she was officially diagnosed with in 2009, have largely subsided. Since she began taking mifepristone, which became Food and Drug Administration-approved in 2012, she also has lost almost 100 pounds and has seen a drop in blood pressure.

“I feel like a person again,” she said.

Cushing’s is a disease in which patients produce too much cortisol, a steroid hormone. It can produce tumors, diabetes, infections and other symptoms if left untreated and can even be fatal.

Patricia also had tumors, though hers were unrelated to her Cushing’s.

The medication, sold under the brand name Korlym, is a cortisol receptor antagonist, said Dr. M. Tufail Ijaz, an endocronologist at Genesis HealthCare System in Zanesville. Though it doesn’t cure patients like Patricia of Cushing’s, as they still produce cortisol, it does prevent the cortisol from taking effect.

Endocrinologist finds fulfillment in local practice

Ijaz, Zanesville’s only endocronologist, has five patients, including Patricia, currently taking the medication. Just hundreds are taking it across the country, he estimated.

On a recent weekday evening, Patricia sits on her couch surrounded by much of her family.

Though she and her husband Chris have never been able to have their own children, they’ve taken custody of five, four of whom are relatives from Patricia’s side of the family. All of them have some sort of developmental disability, she said.

At 5 p.m. on this day, the house is bustling, as four of the five kids still live there.

It’s moments such as these that Patricia said she’s glad to have back.

Not too long ago, her Cushing’s was exhausting her daily. She could barely stay awake more than two hours at a time, her memory was poor, and her weight made it difficult to even move around. Perhaps the most frustrating aspect, Patricia said, was seeing the toll it took on her children, but especially Chris, who became the main caretaker for the children.

“When you’re like that and you’re in that position, you feel useless,” she said. “It was hard for me to watch the effects it had on my family.”

Many of the symptoms started appearing long before her diagnosis, she said. Though she’s now 47, she remembers seeing signs of Cushing’s as early as her 20s. One of the first things she remembers noticing was a bump on the back of her neck, which she described as a buffalo hump.

But in the years to come, the depression, weight gain and diabetes began.

Her condition left her doctors and family searching for answers.

“We didn’t have a clue what was going on inside,” Chris said. “She was eating like a bird and she was gaining weight.”

Many of Cushing’s symptoms mimic other diseases, making it difficult to diagnose. Though she was seeing specialists in Columbus, she was never tested for Cushing’s.

“You can’t blame a lot of people for missing that diagnosis because it comes in stages,” she said.

After working for nine years as a staff assistant in the Genesis radiology department, she quit her job as her mental condition worsened. After she had her first brain surgery in 2008 to remove a tumor, she took a break from undergraduate school at Ohio University-Zanesville, as a traditional class setting became too much to handle.

Then in 2009, Ijaz opened a practice in Zanesville, and Patricia signed up for an appointment. The first thing Ijaz asked her was whether she had ever been tested for Cushing’s.

After tests came back positive, she had another brain surgery, underwent radiation treatment, and took several medications. In the meantime, Ijaz had learned of a new medication awaiting FDA approval: mifrepristone.

“We were waiting for it, waiting for her specifically,” Ijaz said. “When it came (in 2012), we started her.”

Patricia got her bachelor’s degree in 2013. She’s now taking online classes at OU-Z to get her master’s degree in applied behavioral analysis. She said she hopes to be back to work within a year, this time with the goal of working with at-risk youths and adults.

Throughout her ordeal, Patricia has maintained a sense of humor. As she sits in her home, surrounded by family, she deadpans about her weight gain and other symptoms.

She downplays her trials with not only her sense of humor but also her humility. Though she said she’s typically a private person, she wants to be an advocate for others going through something similar.

“People look at it like it’s some amazing thing and it’s not,” she said. “It’s just living.”

elagatta@zanesvilletimesrecorder.com

From http://www.zanesvilletimesrecorder.com/story/news/local/2015/05/30/right-diagnoses-drugs-help-woman-return-normal-life/28224447/

 

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Joseph B, Pituitary Bio

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The pituitary gland

The pituitary gland

 

I was diagnosed with Cushing’s in March 2013. Surgery was done in November 2013 to remove a pit tumor. Recovery has been very slow.

I felt much worse after surgery and was not getting the care I needed. I have now been to five endo. doctors and have finally found one that is helping me.

If not for the huge support of my girlfriend I would not have made it this far.

 

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Deanne (DeeR), Suspected Cushing’s

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undiagnosed3

 

Please help suspected cushings. I have chance to go see.Dr f. And Dont want to waste the opportunity.

I am 45 and a chronic pain patient from a drunk neuro surgeon removing my first ribs and scalene muscles when I was mid twentys. He injected me with about 20 cortisone shots in a year trying to cover his mistakes. Seveve hot flashes and mood swings began. Then can ovarian cysts that would burst. Finally contolled by 1/50 birth contol pills.

2003 Prior to loss of insurance and a divorce primary dr did pituitary scan after my complaints of increased pain every few months with my cycle, the hot flashes and my bearded lady feature.

2005 or 2006 menstal cycles so bad can’t leave house because of amount of bleeding and muscle aches, extreme fatigue and weight gain. At this point too old for birth control pill and naughty me yep I smoke.

2007 they day hot flashes, weight gain because i.u.d.is at the end of its life cycle have it removed.

2008 pregnant hot flashes and breast feeding. Beautiful seven year old and I am sleeping through her childhood. Soooo sad. Memory is now awful and cognitive getting worse. Thought I had alzemers new primary says cushings and sad it was a relief not crazy and maybe can get better.

Not alot of tests vit d so low at 17, morning cortisol high , 24 hour fine. Acth ref range low was 6 mine 7.

I’m thinking adrenals. Need help making sure i am as ready as can be to see dr f. Do not want to waste my chance to get better.

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Angelina S (Angel), Pituitary Cushing’s

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pituitary-gland

I am 41 years old. I have a pituitary tumor, cushings, diabetes and lumbar spinal stenosis.

I went on the depo shot in 2006 due to heavy periods.

In 2009 I was having migraines and weight gain and ended up going to the hospital. They did a scan and said I needed to get to my doctor for further treatment. She only gave me pain medicine and I ended up on blood pressure and cholesterol medicine.

In 2010 I ended back up in the hospital they did another scan and asked if I was being treated for the pituitary tumor. I was in shock I knew nothing about it. They said it had showed up in the 2009 scan. The doctor said she knew nothing about it. I went to an endo he said I needed surgery and it was causing my eye problems pressing on my nerve.

I tried to go to a neurosurgeon but he wouldn’t see me unless I had $3,000 to $5,000 since I didn’t have insurance. So I dealt with the migraines, missed out on alot.

In 2013 now that I have insurance which not many doctors especially specialist take, they wanted me to go for more tests. In 2013 I started taking herbs, which was helping to reduce my prolactin so my doctor said to stay on the chasteberry and butterbur.

In October of 2013 I was diagnosed with cushings, after all the weight gain and trouble walking. December of 2013 they finally stopped playing around and put me on diabetic pills, which I should of been on sooner.

In 2014 I kept getting sick so much I lost my job working with disabled children. In May of 2014 my gynecologist took me off of the depo shot. I kept gaining weight and it was to the point that by September of 2014 I was having difficulty walking. Doctors didn’t say much about it just told me to lose weight.

In March of 2015 I read an article about cushings and the slowing of metabolism so I started taking raspberry ketones and in 2 months have now lost 24 pounds and can walk some. It is so nice because I was basically stuck in bed. I had another MRI in April and they compared it to the one in 2013 and the tumor hasn’t grown any.

The doctors haven’t given me any medicine for the tumor or the cushings, I am trying to control it all with herbs and so far it is working out. I had to fight to even get muscle relaxers for my back. I have lost all my friends through all of this and had to move back in with my parents because I lost my apartment. I was denied for SSD, but I am trying again. I want my life back and I am fighting for it.

 

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Elizabeth F (ElizabethF), Suspected Cushing’s

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Born with congenital hypothyroid (which was undiagnosed until 45). My thyroid is the size of a lima bean!

Discovered that I was exposed in utero and as a toddler to sky-high amounts of dioxins — i.e., Agent Orange, along with what has now been diagnosed as Asperger Syndrome. Through college, I was very athletic, super-strong (stronger than many men and could squat-jump HUNDREDS of pounds) and was an expert skier. I also played co-ed soccer, despite respiratory wheezing. I just dealt with it.

I have had episodes of suspected Cushings for about 25 years.. It felt like immediate-onset mono. I would have tons of energy all of a sudden, turn into a cleaning monster and get loads done (for example, cleaning out and rearranging my large storage unit) only to crash a week later and barely to get out of bed — coupled with weight gain of 40lbs + each episode.

At the lapses between episodes, I could diet and force myself to exercise, lose weight… but each time it was worse. I would gain 40, lose 35 — so I started losing ground. When given prednisone for bronchitis several times, when pregnant, and when given prednisone for systemic poison ivy, the same symptoms came back… but with much higher severity.

At the same time, I had multiple surgeries for perineal abscess — which was lanced and turned into a rectal-vaginal abscess. This would never heal.. I had 10 fistula flap, pig plug, cauterizations — none of which healed. No one could figure out why I wouldn’t heal. They tested me for HIV, but that was negative — so they had no answers. I seemed almost allergic to myself.

My surgeon talked me into a “temporary” loop ileostomy, promising that with no food going through, the fistula would heal. No dice. The ileostomy broke down, herniated, developed gangrene, and I ended up losing my appendix, some upper and lower intestine, and my caecum (which absorbs bile back into the body), and has resulted in terrible malabsorption problems and chronic diarrhea. Because I wouldn’t heal, the ileostomy was made permanent (my worst nightmare). Five years later I found a doctor to reverse the ileostomy. However, he noticed non-cancerous lesions on my intestine. Biopsies revealed nothing remarkable. I tested negative for celiac, for Crohn’s… just “cranky bowel”. While the takedown/reconnection surgery went well, my surgery site (a straight line from sternum to pelvic bone) would not heal internally and I herniated in 8 places. A piece of mesh was placed to cover the entire site. At the same time my gall bladder was removed because it had reportedly atrophied.

Since that last surgery I have gained 60 pounds, in 30 pound increments. One was immediately after the surgery, the other was over Spring Break. I got a lot done, felt like superwoman…all the while eating LESS than usual and drinking lots more water, but gained 30 pounds in a week, without swollen ankles. I had developed stretch marks in my armpits.

Since this started, my body has changed shape, places it stores, my feet have gone up 3 sizes, and my skin has turned kind of orange. I look like I go to a cheap tanning salon. The small buffalo hump I had 10 years ago has turned into a full-blown travel pillow which goes around the base of my neck. It looks a bit like my head is coming out of a vagina.

Don’t know what else to say. I can tell you what endo’s NOT to go to… But I have yet to find one who even believes cyclic Cushings’ even exists. I am trying not to dwell on the underlying question: Am I going to die of this before I get some real help?

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Tess, Undiagnosed Bio

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undiagnosed2

 

Hi. I am looking for any advice I can get. I am 47 year old female. I have been very healthy my whole life. Until about 5 years ago. I tried to have a second child (first was conceived with no problems 6 years earlier) and could not get pregnant so started fertility treatments. Had fertility tests done, blood tests etc. and everything came back fine. Did multiple ivf etc but nothing worked. Had a bunch of natural pregnancies but all ended in miscarriages.

During this time I gained 40 lbs all in one year. I thought it was from the fertility medication or pregnancy weight gain. Could not lose the weight no matter how hard I tried. I have been thin my whole life until now.

Thought I had a sugar issue so begged my dr. to send me for sugar test for 2 years. He would not because he said I have a normal fasting sugar level. I finally went to see an endo on my own. She tested me and said I have full blown diabetes. Again still have a normal fasting blood sugar level. She mentioned cushiness at the time and sent me home with a 24 hour urine test. That came back normal. I take metformin for the diabetes and have lost a little weight but not in the mid section. My arms and legs are getting thinner only.

I went to a new endo recently and she send me home with a saliva test for 4 days. I am in the process of taking this now. She said a 24 hour urine test is not a good test, the saliva is better. I have a bunch of symptoms that won’t seem to go away but don’t know if they could be from diabetes. When I get up in the morning it is very hard to walk. My legs are so stiff and it is painful. I have a really bad pain on the top of my right foot at the base of my second toe. Sometimes the toe actually swells almost like a ring around the toe. I have the buffalo hump. My husband has actually been telling me I have one for a few years, we just thought it was because I gained weight. I also have a full feeling in my head on one side. Almost like there is fluid there. The ear on that side feels clogged all the time. I also get headaches and when I do it is always on that side, above the ear.

I know I should wait for the test but I am so freaked out, so scared it could be a tumor and also afraid if it is not cushiness we then have no answer. I am so sick of complaining and listening to my own story and I feel like a hypochondriac. I also feel like if I have lost some weight maybe it can be something else.

Is there something else that can cause the buffalo hump? I have no stretch marks at all and no redness in the face. My face is also much less round since I lost the weight. No acne, no extra hair growth. As a matter of fact I think I have lost some body hair. I noticed recently I no longer have hair on my arms.

Can someone please let me know what they think?

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In Memory of Melinda Smith 1988-2014

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melinda-smith

 

Sadly, we lost another Cushing’s patient on Friday, May 9, 2014.  Melinda was a member of the Cushing’s Help message boards since Jun 24,  2007.

She was only 25 and leaft behind a young son and many loving family members.

Just last year she posted:

I’m not really sure where to put this post so I’ll just put it here under miscellaneous.

Last Friday was probably the closest I’ve ever come to actually dying. Luckily, my dad came downstairs to check on me. At some point Friday I completely blacked out and my dad found me totally unresponsive, barely breathing with foam in my mouth. The paramedics told my dad that if he hadn’t found me when he did I would of definitely died.

Nobody knows what caused this to happen. The hospital is trying to say that I overdosed on drugs, which is TOTALLY 100% untrue. Especially, since I hadn’t even taken my medicine because I was staying up with my mom to help her clean and move my stuff upstairs from the basement. By the time the ambulance got me to the hospital I was still unresponsive and my kidneys had shut down.

I don’t remember anything from Friday or really much from Thursday night. All I remember is waking up in the ICU at the hospital in the middle of the night with some grumpy nurses who kept asking me why I tried to kill myself. I just don’t understand where they got the idea that I was trying to commit suicide, all of my medication was accounted for plus some.

Another thing, now I’m on oxygen 24/7. Since Friday I have a hard time breathing so the hospital sent me home with an oxygen tank. I feel so old. I’m only 24 and I don’t even smoke yet I’m stuck with an oxygen tank. Something just isn’t right.

We talked with my regular doctor and she thinks that I might of had a stroke or maybe a seizure. I go see her on Wednesday. But until then I can’t do anything and have to be supervised at all times.

It’s really strange, I’m being treated like a baby but I feel like I’m 80. I just want to be a normal 24 year old and feel like my age.

 

Information from the obituary at http://www.stephenson-wyman.com/obituaries/Melinda-Smith/#!/Obituary:

Melinda “Mindy” Smith, age 25, of Harrison, passed away suddenly on Friday, May 9, at her home. Mindy had attended Farwell High School where she had been an honor student and participated in track and cheerleading. She graduated from Clare High School in 2005. She was currently attending college and was hoping to pursue a career as a Psychiatrist. Mindy talked often of becoming a doctor to help others who were struggling with Cushing’s Disease.

Mindy had been battling a fight with Cushing’s Disease since 2005. She fought hard and long, but unfortunately it was a fight that she could not win. She was loved by many, but will be missed by many more.

Mindy is survived by her son, Landon Smith, parents, Deb (Marc) Davis, Fred (Nola) Riggs, of Harrison, and Ralph Rydman, her special friend, Ryan Smith, siblings, Alisha Green of Farwell, Marrissa Rydman of Gresham, Oregon, Misty Riggs of Weidman and Mike Riggs and Seth Riggs both of Florida, her grandparents, Gary (Penny) Smith of Clare, Sheryl (Phil) Wentworth of Harrison, Janet Riggs of Harrison, and Jay Davis of Clare. Also surviving are many aunts, uncles, and cousins that will miss her dearly. She was preceded in death by her grandparents, Dawn Wiggins of Muskegon, Harold Riggs of Harrison, and Carol Davis of Clare.

Funeral services will be held on Wednesday, May 14, at 2:00 PM at the Clare Chapel of Stephenson-Wyman Funeral Home with pastor John Kasper officiating. Friends may meet with her family at the funeral home on Wednesday from 11 AM until the time of services. Memorials may be directed to the family.

Rest in peace, Melinda

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