Home

Irene, Pituitary Bio

Leave a comment

FOR Irene Fox, everything seemed to go wrong all at once. It was 1999 and she thought her life was falling apart. She felt her relationships had deteriorated.

Her face and stomach became bloated. Meanwhile, her arms and legs became very thin. Her blood pressure was extremely high. The sunlight irritated her eyes.
One day the mother-of-two from Bray, Co Wicklow, lost the use of her leg. Then she started falling. “I was losing power in my arms and legs,” she recalled.
Irene was 47, so, she reasoned, maybe it was just the menopause. But she went to the doctor and found out that it wasn’t. She was sent to St Columcille’s Hospital in Loughlinstown for a battery of tests which went on for more than two years.
In 2002 Irene was diagnosed with Cushings Syndrome, following an MRI scan. It emerged that a tumour on her pituitary gland was causing an excess production of cortisol, the stress-relieving hormone. She had an operation in Beaumont Hospital in August 2003.
“Before the operation I couldn’t walk for more than a few stops before falling down,” she recalls.
Irene’s condition did not improve following the operation, however. She discovered she was unable to keep any food down. In October she collapsed and was brought back to Loughlinstown where she stayed until January 2004.
“I was in intensive care for two weeks and then in the general hospital for 10 weeks.”
Irene, now aged 59, was told she had to increase the amount of steroids she was on.
“I take hydrocortisone and I wear a hydrocortisone bracelet to inform people that I take it.”
These days the mood swings are gone and her eyesight is better. “I walk with a stick but I don’t fall any more — the symptoms were caused by the tumour on the pituitary gland. I’m told that it affects different people in different ways.”
There should be more public awareness about the pituitary gland and its functions, she says.
“I feel there should be more awareness of the pituitary gland and what can happen if anything goes wrong — it’s one of these things that people just don’t seem to know much about.”

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

Lisann, Undiagnosed Bio

Leave a comment

Originally from December 20, 2008

 

Being checked for Cushing’s. Have adenoma, long term hydrocortisone user, Graves Disease, a lot of the symptoms.

Don’t know much about Cushing’s.

Having cortisol,diabetes,lipid,blood test all next week.

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

MizBellaTru, Undiagnosed bio

1 Comment

golden-oldie

A Golden Oldie from August 12, 2007

I’m a 48-year old female who has had an awful lot of illness over the past 12 years and starting to wonder if there could be some connection to all of it even though my doctors don’t think there is. They just think I’m one of those unlucky souls who just is sick alot and doesn’t have very good genes.

Here’s what I can tell you about me health-wise:

In 96 I had to have my colon removed due to Ulcerative Colitis. This resulted in 3 surgeries.

In 97 I developed Iritis (inflammation of the eye) and one of the docs said that because I no longer have a colon and have an auto-immune disorder that now my whacked out immune systems has started attacking my eyes. I’m in remission currently but this will be something I’ll have to deal with for the rest of my life.

Things were fairly quiet for a few years with the exception of having Iritis flare-ups and don’t remember anything else going on until 2000 when I broke my left ankle (badly) and now have a steel plate with 11 bolts holding my ankle together. (This happened in 2000 and I still have problems with that ankle).

In 2001 I was diagnosed with Diabetes. This had run in my family (my great-grandmother had been diabetic and I had been borderline diabetic as a child). I started out taking oral medications but after a couple of years this wasn’t enough and it resulted in me being on insulin now for the past 3 years. (Sugars still aren’t under control).

Also in 2001 I had some kind of seizure. Was taken to the hospital and after a lot of blood tests they thought it might be due to a calcium deficiency and recommended I go see an Endo. However, when I wen to see an endo he didn’t think my calcium was deficient enough to cause what had happened and recommended I go see a neurologist. The neurologist thought it was some kind of seizure too and ran some preliminary tests on me but he wouldn’t return any calls for me to find out what other tests should be run. I gave up on him and still never had an answer about what had caused this very weird episode. (What had happened was that I had been at work and all of a sudden my jaw started to tighten up and my head cocked to the side and I started making all these weird grimaces. My mouth became locked up so could barely get any words out. I couldn’t turn my head – it was as if it was locked in place. This is what led the ER (after running blood tests) to determine that they thought my reaction was due to low calcium. To get my rigidity to loosen up, they gave me several shots (can’t remember now what it was) but it finally had allowed my body to loosen up enough that I could finally leave the hospital. This event lasted several hours and moved in to my arms where they became so rigid that it felt like someone was turning my arms inside out. I was completely exhausted after that had happened.

As time went on I would have periodic episodes of what was thought to be a seizure and I just started to learn to live with it. Sometimes only my face was affected and sometimes my whole body would become very rigid and after several hours these episodes would pass but I was always left feeling completely worn out.

Throughout all this time my Diabetes has been almost impossible to get it under control. My insulin doses would be increased but I never could get my sugars to stabilize.

In the spring of 2006 I developed some type of wound on the top of my left foot. It spread and ulcerated and I went to several types of doctors and a couple of them thought it might have been a spider bite of some kind and due to the diabetes it wasn’t healing. I was put on various types of strong antibiotics but nothing was helping. I finally was referred to an infectious disease expert and he said I had some type of serious strain of staph infection and he finally was able to get me on an antibiotic that started to help me heal. I’m now left with some horrible scarring on my left foot but at least I didn’t lose my foot which is what I thought might happen.

In August of 2006 I developed Bells Palsey on the left side of my face. I went to a neurologist (different one from the one I had gone to for my “seizure”). He was the one who diagnosed me with Bells. In the process of seeing him I had one of those episodes in his office and he watched me very closely as it evolved and told me that he thought I had a form of “Dystonia” which is a movement disorder. After a couple of months my Bells resolved although I do have some permanent nerve damage in my face which affects how I smile but it seems to only be really noticeable to me.

In late fall of 2006 I noticed my right ear was hurting quite a bit and was draining. I went to this ear doc and she determined I had a ruptured eardrum with a huge hole that might require surgery. She also determined (after some tests) that I had an infection in the mastoid and said it was imperative that I not let any water get in my ear so that the ear could dry out enough and the infection to clear up before I have surgery. She said it could take a couple months before my ear might be dry enough and told me to come back in a couple of months. During that first visit she also did a hearing test on both ears to establish a baseline. I came back to see her in Jan 2007. When she looked at my ear she said it looked like the eardrum was starting to show some signs it was trying to heal itself (because originally she thought the hole was too big for it to ever heal on its own). She told me to give it some more time and come back again in a couple of months. I came back to see her in April 2007 and the hole was still showing some progress in trying to repair itself so she said she didn’t want to operate if my body could heal the hole. In June of 2007 my left ear started producing a very high pitched ringing sound. I’m not talking a little ringing sound but a sound loud enough it kept me up at night. I had noticed my hearing had diminshed quite a bit in that left ear. I then developed some dizziness and a sense of fullness in my left ear and noticed that when the barometric pressure changed my head felt like it was going to explode. When I went back again to the ear doc she surmised that she thought I now had developed Menieres. She put me on a diuretic and a steroid as this is supposed to help with Menieres but it didn’t seem to do a thing for me. The ear doc ran another hearing test and found that my hearing in my left ear had diminished since it was first baselined last December.

So, a little over a week ago my right ear (the one with the perforated eardrum) started hurting quite a bit and the ear started draining. Again I went back to the ear doc and she determined I had a sinus infection and an ear infection so she put me on an oral antibiotic and antibiotic ear-drops. It’s been a full 7 or 8 days on this antibiotic treatment and my hearing in my right ear has diminshed considerably to where I can hardly hear a persons’ voice on the phone. I’m to stay on this present course of antibiotics for another week. In the past I’ve always responded to antibiotics but it doesn’t seem to be helping this time. My right ear has been draining for a whole week and it’s never done that before.

Also I want to point out that I gained a lot of weight over the last 15 years and I’m now about 120 lbs overweight. I gained 12 of those pounds in just less than 2 weeks recently and my eating hasn’t changed. This is what made me start looking on the internet about rapid weight gain when I came across Cushings and started wondering if I could have this.

At this time I’m waiting on some results from a urine test to see if I’m starting to have a problem with my kidneys because I’m dealing with a lot of edema lately. I don’t know if all the problems I’m having such as the poor wound healing, edema, diabetes, developing high blood pressure are all separate things or more related to my Diabetes.

So at this time I can’t claim that I’m a “cushie” because that’s not been identified yet but I’m thinking that I should get tested for it.

Anyway, that’s what’s going on with me right now.

Thank you for reading this very long bio.

MizBellaTru

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

Kate N (Kate NC), Steroid Induced Cushing’s

1 Comment

steroids

 

Hi everyone! My name is Kate and I am 32 yrs old.

I’ve had back pain since I was 14, and 6 years ago I went through a series of steroid injections to try to relieve the pain. I ended up with steroid induced Cushing’s Syndrome.

I gained 80 pounds in under 8 weeks, grew a huge buffalo hump, lost more than half of my hair, had a horrendous headache that hospitalized me, gained the deep stretchmarks, grew facial hair etc etc etc. You name it, I had it. All in a matter of 8 weeks after my final steroid injection.

Fast forward to today and I still have all of the weight, my hair didn’t grow back, I still have SEVERE facial flushing every single day (the flushing alone is ruining my life) and I have yet to find a good, knowledgeable Endocrinologist who can help me. I did have a plastic surgeon remove the buffalo hump so I feel much better about that. We have only caught my cortisol level high 1 time. I’m not on any meds for the Cushing’s and I’m miserable.

Just hoping to get to know some other people battling this awful disease with me. Thanks for having me.

 

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

Rita (Rita), Steroid-Induced Bio

Leave a comment

Hello to those who are frustrated & suffering!

My real search for a diagnosis began vigilantly just over 2 years ago. I was extremely hot,exhausted,weight gain (unexplained) and not sleeping well and sleeping all the time but extremely fatigued!!! My face became very round and my facial & body skin was a nightmare.

My husband kept saying that he thought it was systemic but I wasn’t sure. And, this sounds so sill but completely true, I was watching an episode of Doc Martin (UK series) where a woman was having trouble and he told her she had Cushings. Well, I had never heard of this disease so I looked it up on the internet and told my husband that’s what I have. Of course, he said that I was being silly.

I had very upset stomach most of the time to I had an endoscopy & colonoscopy where large cysts had developed. I also had burning and nagging pain in my upper thigh area thinking it was my Lymph nodes. Many more cysts were discovered on my ovaries and all the doctors cold focus on were the cysts and telling me that my blood pressure was too high and that I needed to lose weight.

I few months later I noticed small purple striations on my abdomen and just knew I had Cushings. So, I asked my doctor if he could run cortisol test on me and he said no problem. I had also told him at this time that I was using a steroid cream to control my eczema and he said that would not cause not effect me in such a way to cause such problems.

I had beeen to the emergency room, had 4 CT scans, atleast 7 ultrasounds, 2 MRI’s and so many blood tests that I had lost count.

Another doctor had recommended that I see an Oncologist so I saw 2 of them…..still no idea and 2 more visits to the emergency room.

I sent all my files and tests to the best Endocrinologist I could find and still had to wait 6 months for an initial appointment.

During the 6 months of waiting to see my Endocrinologist, my body had taken a severe turn for the worse. I could barely step up onto a curb and would spend 3 weeks straight in a bed.

I was extremely depressed and felt like I was dying!!!

April of 2014 my long awaited appointment to see THE BEST ENDOCRINOLOGIST in the state finally came!!!!! He took one look at me and said you have Cushings without a doubt!!!! he saw all the other files and tests that the other doctors had done and said they all did the same exact tests and have absolutley no idea what they are doing.

This is the best doctor I have ever been to see in my entire life, he spent over 1 hour with my during my first evaluation. (Please know,that he is not even covered by my insurance but I didn’t care……shelled out $510 and it saved my life.)

He would stop asking me questions until he got to the root of what was causing the Cushings. And it was the cream that I was using to control my eczema!!!!!!! Yes, please know that Cobetasol Proprionate will cause Cushings if used on a long term basis.

I had no warnings or instructions from my Dermatologist. He just said use this on your eczema.

Dr. Neil Breit saved my life!!!! He said that I was hands down, the worse case he had ever seen!!! And he said that I would have definitely been dead in 1 or 2years at best.

If you live in the Northeast, please seek out this doctor. He is the best and very passionate & loves his work. He truly cares and brings lots of smiles with his treatment!!!!j

Dr. Breit still spends 1 hour with me on every office there. And I still pay full price but do not mind, because he saved my life!!!

Also, right before my diagnosis, I discovered GERSON THERAPY. Regardless of whatever is wrong or just being healthy, juicing helps me immensely with energy and just feeling better as a whole!!!

Thank you for enduring my long story!!!!! Keep fighting for your diagnosis and don’t stop till you get one!!!

Thank you kindly for reading my story,
Rita in New Jersey

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

Right diagnoses, drugs help woman return to normal life

Leave a comment

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/

 

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

Older Entries

%d bloggers like this: