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Irene, Pituitary Bio

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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.”

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Vicky (Vicjy), Adrenal Bio

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Hi. For the last couple of years I have had different symptoms. I’m 45 and feel like I’m 70. I think it started about 3 years ago. I would break or fracture something and it would take forever to heal. I gained over 60 lbs. I’m always tired yet don’t sleep well. I look like I’m 9 months pregnant but skinny arms and legs. Stretch marks on body. Round red Face that constantly feels hot. My back has a hump and my neck has fat pads. Finally, prehypertension. I also have intense itching especially in a soecific area. Oh, let’s not forget anxiety and focus issues. .

I had enough. About 7 months ago I began going from doctor to doctor. Every test came back fine and they dismissed me. Finally, I went to an endo. She tested me for Cushings. I gad 5 tests and all came back positive. All this took time but I tried to be patient. I know this is horrible but I was actually happy to finally have an answer to my issues. I then had a CT scan and found an afonona in my left adrenal gland.

I had surgery a week ago today. I’ve heard so many different stories of figuring out if they have cushings but little about their recovery. I’m hoping to hear people’s recovery stories. I’m actually much better than I thought I’d be. I’m weak, still some pain at surgical sight, out of breath, and very emotional. Also, hard to do an intellectual activity before feeling overwhelmed.

Can you all share your journey? I’m taking 40 mg of hydrocortisone a day. I was wondering if anyone had itchiness as a symptom. Doctors have told me that they haven’t heard of that as a symptom of cushings. It is horrible with me and am hoping it will go away with this surgery. I feel like it has gotten better.

Looking forward to hearing about some recovery stories and feel free to ask me anything to help other understand what they are going through.

 

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Lisann, Undiagnosed Bio

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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.

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Vic (Tori276), Undiagnosed Bio

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Numerous stressful situations in the last 8 years (death of a parent, breakdown of long term relationship), weight gain around truck and abdomen (despite not eating any more), bleeding when exercising (even what I would consider moderate), history of hydrocortisone use on face daily for last 26 years.

Started experiencing weight gain, and muscle pain and weakness with serious fatigue within last 3/4 years. Have recently developed stretch marks on abdomen and worsening lethargy, muscle pain, back pain, hip pain and gastro-intestinal issues etc. I have ALWAYS suffered weakness in my ankles when stressed and they often give way.

Currently under a lot of stress of work, but most of the pain went away with lots of walking while on holiday for a week.

I previously tried Agnus Castus a few months back for what I thought were hormonal issues, but suffered bad side effects and stopped taking them.

Recently took all the hormone and thyroid blood tests and had high blood pressure, high cholesterol and high prolactin. I was advised to have a cortisol test given my symptoms of stretch marks etc. I am currently waiting on the results…

 

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Sheryl, Adrenal Patient

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I was diagnosed with Cushings Syndrome of the adrenal glands in September, 1973. I underwent a bi-lateral adrenalectomy in January, 1974. 30 years ago.

I’m sure some things have changed since then; I was in the hospital for 3 weeks post-op. I had all of the symptoms listed on this site. I originally was in the ER for what turned out to be a kidney stone. While there the doctors noticed a few oddities. For me the symptoms had been coming along so gradual that no one really noticed. The kidney stone was one result of Cushings. From the ER I was sent for many tests. MRI was not available then, and a test was done by threading a catheter into the groin area artery and shooting dye into it in order for the doc. to see the tumor(s). I tried to find it interesting and it was except every time they pushed more dye into me it was painful and eventually passed out.

By that time I had entered the hospital knowing surgery would happen and that was the final test to make sure exactly where the tumors were. The surgeon told me afterwards that each adrenal had a huge tumor-benign-fortunately-each one the size of a grapefruit. The surgical incisions were made in my back, one on each side of the spine, in a sort of half moon shape. They are quite large because the tumors were so large. The replacement therapies required are hydro-cortisone and florinef. Because everyone is different you may have a different dose than I do. It took quite some time for my body to really become adjusted to the replacements. At least 5 years for me. I would hope for you newcomers that medical progress has considerably lessened that time!

I did have to be hospitalized on 3 or 4 occasions afterwards just because my body was still adjusting and because this is a rare disease not too many docs understand it. At any rate here I am 30 years later and this is the first time I have ever been able to really talk to anyone like me.

I kept asking my docs if there was anyone I could talk to, but they were not aware of any. I am 51 years old now, and feel so very uplifted that I can finally share with others my experiences of ups and down. I am married to the most wonderful man in the world, who is very supportive in every way. We have 2 children, our daughter is 21 and our son is 19. Our son is also a special needs person, having been born with cerebral palsy. He uses a wheelchair and is mentally delayed. PLEASE NOTE: His birth defect was not in any form or fashion caused by my having had Cushings. Do not be afraid to become pregnant and give birth. Unless medical information has changed for this area-we were told by many specialists and OB’s etc. that CP did not result from the Cushings.

I have been going through perimenopause and menopause since I was 38. (I was 21 when I had my surgery.) It has been difficult finding a doc who believed what I was telling him. I have been on various hormone medications for the menopause. At present I am taking Prempro for it. In all, the medications I am on include 30 mg. of hydro-cortisone, 1mg of Florinef and 30 mg. of Prozac. I know Prozac has been bad for some women, but for me it was a life saver. I had severe mood swings more than just once a month.

I would like to correspond with anyone who would like to know what may lie ahead after surgery, and also anyone who might be in the “older surgery” area. Just knowing that this site exists is heart warming! Hope to hear from you all soon. Love you all-Sheryl


Listen to Sheryl’s Interview here.

 

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Megan (Gaff228), Adrenal Bio

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adrenal-location

 

Hi everyone. I’m a 32 year old female. 5’5″ and currently 178lbs. I have a unilateral adrenalectomy on Wednesday, June 22, 2016. I’m just under a week post-op and feeling pretty good.

My story begins 6 years ago. I had always been thin. Too thin. People commented on how thin I was. But that was just me. I was a vegetarian, active… but not actively trying to be skinny.

In June of 2009 I began to gain weight. By December I had gained almost 25 pounds. I went to every doctor I could think of…. and everyone told me the same thing: “Eat Less! Workout More!”. Having been pretty healthy to begin with- I couldn’t figure out what I was doing wrong. I got a personal trainer, signed up for a few 5ks and joined Weight Watchers.

Every day I was discouraged as the scale went up and nothing I did seemed to work. My hair went from dirty blond to VERY dark brown, thick but fine to very coarse and curly. I started to bruise really easily. I stopped sleeping. I got the buffalo hump (although it took me 6 years to find out what that was)….

I stopped wanting to see people or go places. I was embarrassed by my new shape and how easily I got tired doing things I had done so many times before.

3 states and 11 doctors- including specialists- later…. I had a routine CT scan done for ulcerative colitis. The tech that did the scan noted a tumor on my adrenal gland. My GI doctor asked me about it- I had never been told there was a tumor before- and sent me to an endocrinologist. That was in October 2015. My endo tested and tested and tested…. and finally- in April 2016 diagnosed Cushings.

So like I said, I’m a few days post-op. On 20mg of HC 2x a day right now. Still sore and puffy and hoping that I will see an improvement in weight/sleep/bruising soon!

I’ll keep you updated!

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Harley (HBW), Adrenal and Pituitary Bio

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golden-oldie

 

Originally posted Monday, January 19, 2009

My bio for the Cushings and Addisons web site.

Hi my name is Harley I’m a 56 year old male. In 1985 I broke my back which reqiured several surgeries over a period of 10 years, which caused a severe amount of pain. Then about 10 years ago I was diagnosed with addisons disease. I did’nt have all the symptoms of the disease but I’ve been diagnosed by my family physician plus other physians have confirmed the diagnosis also. As we all know this disease is very hard to detect. I’ve been on prednison and high doses of hydrocordison over the past 5 years. I’ve been hospitalised numerous times with adrenal crisis.

I was also diagnosed with a pituitary malinoma and have been treated that over the past 10 years. I have MRI’s every so often to see if it has enlarged.

I started seeing a massage therapist for the past 4 years.Starting with my back which has really been helping. She also treats me with oils which I was very hesitant at first but have grown to believe in them in many ways. My doctor has also discovered that my testoterone levels were extremely low so he has been giving me shots for that every 2 weeks I have recently been diagnosed with Cushings do to the high doses of steroids I’ve had during this time. In the past I’ve seen three endroconligists to avail.

Needless to say my wife and I have been very discouraged after all they are supposed to specialists. My last hospitalition my family doctor talked us into seeing another endo as my doctor said he was afraid of the shape I was in he was afraid of me not making it. I thank God for the faith that my wife and I have or I’m afraid this would have been more than we could handle but He has given us the strength to keep moving on.

God directed my wife to a gal that is a Certified Holistic Practioner that also has Cushings and Addisons herself. She has been living with this for the past 7 year. This is what prompted her to start her practice of healing. She started treatin herself first using oils and changing her diet and it worked for her she is stable now and doing much better. This is a real blessing because she has studied this disease indepth plus can relate to what I’m going through. It’s been great because before this I had know other contacts as we all know these are very hard diseases to detect. The new endo has set up a series of tests for me which I started a week ago and have another series this next Monday, after he gets the results of these he will decide where to go from there.

I’m so glad that God has finally set up a support group for me but they are also very strong in faith which continues to feed my wife and I.

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