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MaryO: Giving Thanks for 30 Years

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Today is the 30th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 30 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Even when I got to 10 years NED (no evidence of disease) from cancer, I couldn’t go back on the GH.

However, this year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died a couple months ago.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

Janice B, Pituitary Bio

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Cushing’s with a pituitary tumor. Had surgery on April 2013.

Surgeon nicked the pituitary gland giving me adrenal insufficiency. Sept 2016 went into adrenal crises while on holiday in Germany. I believe I was given too much prednisone as I have cushing’s again from too much prednisone.

I am working with my Endocrinologist plus an MD with a MSc who is an expert in nutritonal biochemistry.

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Nancy (chance), Steroid-Induced Bio

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golden-oldie

 

Originally posted April 18, 2008

I have Iatrogenic Cushings—I also have adrenal insuffiency —One doctor told me to just say I have Addison’s—I have many symptoms of Addison’s but I don’t have the salt issues. I have much empathy for the 52 year old man.

I am 60 and have been on cortico-steroids since 1979—everyday. It has beaten up my body alot-oh–I have steroid dependent asthma–I have essentially been in statis asthmaticus and/or on steroids for 30 years.

My allergist told me I have the twitchiest lungs he has ever seen. I am sharing this because anyone else on steroids for their asthma must have very twitchy lungs too.

I know I am lucky because I have never been on a respirator–Hospitalized yes.

I would like to hear from other folks with steroid dependent asthma or other Cushing’s folks.

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29 Years ~ Giving Thanks

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29-anniversary

Today is the 29th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 29 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Even though I’m now 10 years NED (no evidence of disease) from cancer, I still can’t go back on the GH.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last year, I’ve developed ongoing knee issues.  Because of my Cortef use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on another blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days at http://www.maryo.co/

LaDawn (NanaX3), Adrenal/Prolactinoma bio

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golden-oldie

 

I am a 54 old wife, mother and grandmother.

I have been terribly ill for 17 months with adrenal insufficiency and a prolactinoma. I do not know yet if it is a nonfunctioning tumor or not, but I suspect so since I do not have any of the Prolactin symptoms. I will be evalutated soon for that.

I have gone the whole nine yards at Vanderbilt University Medical Ctr in Nashville recently. This is after 17 months of hell and seeing doctor after doctor. No one would listen to me.

Last July I think I was actually dying and was probably in adrenal crisis. I had hypertension and hypotension epsisodes with two ER visits with extremely high blood pressure and stroke symptoms. I was seen by many doctors who were all headed in the wrong direction. I was basically told it was female problems, stress, menopausal, etc. etc….you know the routine..many have the same story.

However..mine has a twist. I was so desperate for help I went to see a Mennonite Naturopathic healer in Kentucky. His name was well known of helping so many people. He not only seen his Mennonite Clan but also saw many “English” as we are called. He does Iris Iridology. This is a very old time practice that is about faded away. It takes years to learn and I suggest if you go to one make sure they have done it for years.

He looked into my iris with a small eye magnifying glass. He told me all the problems that I have been diagnosed for years, Fibromyalgia, IBS, Sleep Apnea, Insomnia, hypertension, hypotension, digestive disorders, and early pancreatitis. Now this was different than the doctors as my sister told me NOT to tell him any symptoms at all, much unlike the conventional doctors who heard all my symptoms. Then he really shocked me when he told me I had adrenal problems and something wrong with my pituitiary!!!!! He gave me natural medicines that helped some but I knew it was not the final ending to this problem.

I went back to my FP at the time and told him my horrible symptoms of flushing, anxiousness, nausea, dizziness, digestive problems, inflammatory pain etc, etc. He finally checked my norepenephrine levels were 624! He then did a MRI of my adrenal glands…..negative.

But then he went back into the service and left me holding the bag…no referral no recommendations. I was ticked. I had to search for a new FP on my own. Finally I found a FP in my own county that everyone said loved a challenge. He thought I had a carcinoid tumor or an adrenal tumor.

After blood tests showed several things he sent me to Vanderbilt. After my first appt. they tought the same thing. However tests revealed that my cortisol was lower than a 1. Barely registering. No wonder I was so ill. They did a MRI of my pituitary and found a 6 mm tumor..suspected to be a Prolactinoma.

So the Mennonite man was batting100%, conventional doctors 0%. Well, I know I still need conventional doctors so I can’t beat them up too much.

However…why is it so hard to get doctors to listen…even my regular Endo missed all this last fall even though he suspected orthostatic hypotention? Men doctors are horrible, particularly for not listening to women and labeling them hysterical depressive menopausal ninnies!

Would love to hear from others please about their experiences too? Meds or surgery for Prolactinoma…what worked for you?

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Vicki (Pugmom), Steroid-Induced Cushing’s

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steroids

 

I am a recent transplant to San Diego and I am looking for a Cushings support group. I acquired adrenal insufficiency and Cushings about 3 years ago. I was given large amounts of steroids for numerous sinus infections, pneumonia, and bronchitis. I am 61.

I am trying to find an on-line or actual support group for Cushings folks or adrenal insufficiency. The last 3 years have been full of illness, numerous hospital stays, and a lonely road. I am tired of living alone with this health issue and would be happy to share my story with a group or others who have walked in similar shoes.

I take 25mg of hydrocortisone daily to maintain my current health status. I will check the message board for others like me and hopefully I can connect either in person or on-line with a group, I find that living with this health issue to be frustrating and at times depressing. I am trying to overcome being the disease rather than just a person who has Cushings. At times I just feel crummy for no other reason than my system is out of whack. I hope that I can find a group to be a part of and to hear their issues and offer any help I can from my experience. I am in the process of getting a medical team of doctors and see an endocrinologist in December.

This disease has had me on a roller coaster for 3 years. I don’t plan a lot of things ahead of the event since I never know how I will feel the next day. I am hoping there is someone else who has dealth with Cushings and what medications they are taking to make the disease manageable.
Thank you for reading this and offering any advice on locating a group with like health issues.

Vicki added a second version of her bio:

I have been living with adrenal insufficiency with a diagnosis of Cushing’s syndrome. I was diagnosed in 2012 and was told that I received this condition from having been given large amounts of prednisone for pneumonia, bronchitis, and sinus infections. I have no issues with my pituitary gland but I still demonstrate the same symptoms as someone with an official diagnosis of Cushing’s and live with taking steroids. I have the buffalo hump, the sweats, feel tired all the time, problems sleeping, moon face and weight gain as well as other symptoms. I have just moved to San Diego from Houston to be closer to our family. I am trying to find a group with the same type diagnosis or a group that I can be involved with to talk with. I realize that this condition is very rare and I am looking to be a part of a group where I can discuss the issues related with living with the diagnosis. I am very glad to have found this website where I am hopeful that there are others like me who also are looking for a group to discuss their issues.

It all started with a fainting episode in 2011. I broke my foot when I fell and saw a doctor the next day. I had been feeling so tired and sweating so much as well as having had the hump come up on my back a few years prior, which my doctor in Indiana didn’t think was anything but a dowager’s hump that could have been genetic.

I then became ill in 2012 with pneumonia and was hospitalized several times due to relapses of pneumonia and uti’s that put me in the hospital. I was having so much pneumonia and bronchitis on top of this other issues and was not getting any diagnosis other than adrenal insufficiency. in 2014 I had been hospitalized every month with one infection or another. My husband and I finally determined we were going to relocate to Houston, TX to see the doctors there. I was already on 40mg of hydrocortisone daily and still felt bad. I was almost gone on two different visits to the ER in Indiana and found myself on the floor unable to get up on one instance. I was on the floor unable to pull myself up for 7 hours in the dead of winter until my husband came home. I had renal failure and was not really expected to make it but I did. After a winter of these problems we decided that cutting off the hump on my back, as discussed by one doctor, was not the issue and we made plans to relocate to Houston in 2014.

I had a great team of doctors there and was diagnoised with Congestive Heart Failure, glaucoma, high blood pressure, high cholesterol, GERD, fibromyalgia, connective tissue disease, osteoparsis, adrenal insufficiency, and cushing’s syndrome.

I was in the hosptial with one infection or another for 1.5 years due to pneumonia that was caused by aspiration into my lungs. I had surgery, Heiller Myotomy in July 2015 and from that point the pneumonia has stopped. Thank God.

Since that time, we relocated to California to be nearer to our daughter and her husband and I have not had to deal with the pneumonia but till deal with the adrenal insufficiency and the Cushing’s syndrome.

Maybe someone has been though some of these same issues and would like to talk about what they are experiencing. I am willing to share my experiences also.

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Zoann M (Zoann), Steroid-Induced Bio

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steroids

 

In July 2010 I was rushed to the hospital by a friend who was convinced that I was dying. Having had asthma for many years, I kept telling her I wasn’t having an asthma attack, I was just so tired I could barely hold my head up. The ER doctor was a brand new resident, she took one look at me and said “You’ve got Cushing’s.” I had no idea what she was talking about, but because I was too tired to care, I agreed to be admitted to the hospital for testing. Five days later I walked out with a confirmed diagnosis of exogenous Cushing’s Syndrome caused by massive doses of prednisone I had been taking for more than 10 years for the asthma.

Five years later I have had Adrenal Insufficiency added to the long list of conditions caused by the prednisone overdoses. I am steroid dependent now; 15 mg of prednisone daily keeps me from being admitted to the hospital for asthma attacks. Taking the drug that almost killed me in order to stay alive is one of the hardest things I have to do.

I am fortunate in that I have an excellent endocrinologist who works well with my primary care doctor to manage the multiple medications I take to cope with my various chronic conditions. Right now the thing I struggle with the most is the pain – muscle pain, feet pain, joint pain, nerve pain. Trying to find medications to deal with the pain is almost impossible; I can’t take most narcotics, even if I could find a doctor to prescribe them.

My endocrinologist told me at our last visit that there was nothing else he could do for me except monitor my condition. My primary care doctor has said the same thing. It is very discouraging to be told that there is nothing else that can be done.

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