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Sherry C, Pituitary Bio

March 31, 2015

MaryO Addison's Disease, Adrenal Surgery, Cyclic, Golden Oldies, Pituitary, Pituitary Surgery, Treatments, Update , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

golden-oldie

 

 

I have been very ill for many years now, since 1999 that I know of. But it had always come and gone, until 2004 when it decided to stay. At first it was a mystery as to what was wrong. I was seeing a psychiatrist that felt very strong that what I was dealing with was endocrine related. He mentioned a few things that it could be and one was Cushing’s, so I looked it up on the internet and sure enough I had many of the symptoms of Cushing’s disease, moon face, buffalo hump, weight gain, big round belly, red face, very ruddy complexion, acne, nausea, depression, fatigue, hirsutism, depression, anxiety, hypertension, unusual bruising, and highs and lows of energy.

I found this support group on the internet at Cushings-help.com and they helped me find Dr.William Ludlam at OHSU. He told me I had a suddle case of Cushing’s and had a pituitary tumor on the right side displacing the pituitary to the left. Although Dr.Ludlam originally saw tumors on both sides, I had a pituitary tumor that seemed to be cyclic. When it turned on I had major Cortisol energy, when it turned off I got very achy, nausea, and very tired. In March of 2006 I was officially diagnosed after 1 long year of testing, and went on to have my first unsuccessful Transphenoidal pituitary surgery 3/23/2006 with Dr. Johnny Delashaw at OHSU. I had a second unsuccessful pituitary surgery 10/12/06 and finally a BLA 11/7/06.

I am now cured of Cushing’s disease 2 1/2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back, damage to soft tissues throughout my body, Diabetes, High lipids, Fatty liver, I have no usable veins, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need in emergency’s. I had my period for 1 year straight so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working hormones any more. I am on all replacement hormones, except DDAVP. I ended up with a new doctor that gave me a severe case of steroid induced Cushing’s. I am still dealing with this aftermath; the details are in my timeline. My timeline will update you as to where I am at now. I will try to keep the timeline updated so you know where I am at as far as getting better.

Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case.

So if you believe you have Cushing’s, get to a specialist that knows Cushing’s disease, don’t waste time on doctors that do not know the disease, it is so worth it in the end to get to the right doctor. This disease is one of the hardest endocrine diseases to diagnose. Cushings_help.com/ founder MaryO has been a lifesaver for me and still is, I have met people from all over the country, over the years I have made many friends that have, had or are still in the diagnostic phase.

I live in a small town of around 10,000 people and I hear all the time, oh I know so and so that had or has a pituitary tumor. What I am finding out is there are a lot of people in this town that have this disease, it is suppose to be rare, one in a million, my next goal is to get my story out and have local people contact me, then start a support group. Maybe get some accurate numbers of actual pituitary/brain tumors and find out why this is happening in this small town. It will be a big adventure but if it saved even one life it will be worth it. I know of 3 definite pituitary Cushing’s cases so far.

My Timeline of illness to diagnosis

3rd pregnancy 1994 pre-term labor again, stopped, gestational diabetes, son born 3 weeks early and I got toxemia after my son was born, was told this is very rare. I should have known RARE would be a word I would hear a lot in my future.

1995-Left breast discharge, surgical biopsy done, lump removal of marble size, this should have signaled a full hormonal work-up, but didn’t. No cancer.

1997-1999 Depression and severe anxiety with panic attacks…Diagnosis of Fibromyalgia. Weight 130#

1999- First occurrence of unknown mystery illness. Hypertension, fatigue, flushing, swelling of face, hives, and much more that lasted several months. Sick on and off with mystery illness. Tumor was turning on and off.

April 1999-2004-Severe nausea and vomiting, extreme fatigue, weight gain of 50# in about 1 years time, headaches, dizziness, hypertension, tachycardia, muscle and bone pain, malor rash, other rashes, IBS, occasional unexplained low grade fevers, anxiety and depression much worse, increased hirsutism, almost constant mouth sores, memory loss, cognitive difficulties, loss of coordination, syncope, excessive energy spurts, insomnia.

**Off work for 3 months April-June due to symptoms…Saw PCP, Gastroenterologist, Rheumatologist and Cardiologist… diagnosis Peptic ulcer/Chronis Gastritis and Chronic pain Syndrome and Tachycardia/Hypertension. Abdominal/Pelvic Cat scan done and fatty liver noted. High Cholesterol and Triglycerides discovered.

Nov-2004 My Psychiatrist was the first to mention Cushing’s or a Pheochromocytoma; he felt all my symptoms where due to endocrinology. He did not want to see me again until I was seen at OHSU. I have never seen him again due to insurance change. I really need to thank him.

Dec-2004 10# weight gain in 1 week with severe abdominal distention….another Cat scan done, lymph nodes around vena cava where enlarged.

Jan-2005 Went to OHSU for diagnosis….First saw an endocrinologist that was not experienced with Cushing’s, she ordered 1 UFC and 2 midnight saliva tests, and told me to test when I felt my worst; Tests where low so she felt my symptoms where not due to my endocrine system. Boy was she wrong. I needed to test when I felt good, or high.

Feb-2005 Went to the Pituitary Unit at OHSU and saw Dr.Ludlam, he believed that I had Cushing’s but we needed to prove it. MRI saw adenoma on right side displacing pituitary to the left. He originally thought he saw tumors on both sides, he was right. Lot’s of testing done. Testing did not prove it yet. Dr believes I am Cyclic. It took 1 year for diagnoses from Dr.Ludlam.

April-2005 Peripheral vision test done by local optometrist, showed some peripheral loss in left eye.

May 2005-Lot’s more Cushing’s testing, PICC line in all month. Major dizziness, passed out and fell this month. Diagnosed with Type 2 Diabetes but cannot treat due to extreme highs and lows, trying to control glucose with diet. I have very high and low Cortisol days. I am very cyclic at this point.

June/July 2005-Three TIA like event’s… left sided weakness and numbness. Saw Neurologist that sent me to Neurologist at OHSU. Found three new white matter lesions seen on my brain MRI. Unknown cause. 5 in all now.

August 2005-Had to leave my beloved job teaching Medical Assistants due to symptoms. I had one more TIA like event.

Sep-2005 Neurologist at OHSU ran several tests and came to the conclusion that if in fact we could prove Cushing’s, all of my symptoms where due to this disease. I stopped all medications by choice.

Nov-2005 I went back for extensive testing at OHSU with Dr.Ludlam and sure enough the numbers started proving my case. Very high midnight serum Cortisol’s among other high tests.

Jan/Feb 2006-PICC line in and extensive Cushing’s testing done with CSS in Feb. CSS showed left sided gradient strongly. Cortisol numbers have proven my case, finally…. I had a midnight serum Cortisol of 34.1, the Midnight Salivaries, Midnight Serum Cortisol, UFC’s and CSS all positive for Cushing’s disease.

March 23, 2006 I finally had Pituitary surgery at OHSU, they found the tumor on the left side bigger than originally though and removed the whole left half of my Pituitary gland. I was in the hospital for 6-days due to complications of Diabetes Insipitus and Adrenal Insuffiency.

April-2006 Seen in the ER 3 times. Hospitalized for 4 days again due to complications, Blood cultures showed infection. I am on very high doses of Hydrocortisone and also taking DDAVP for the Diabetes Insipitus.

April 2006- I am finally getting better somewhat…..This has been one heck of a roller coaster ride. I am now on Hydrocortisone 40/40/30. I am told we won’t know if I am cured for 3-6 month’s.

June 5, 2006- Off Hydrocortisone stimulated my Cortisol to 24 on the ACTH stim test.

August, 2006- Not cured, testing again!!! I had that gut feeling when I woke from the first surgery. I just knew…

October 12, 2006- Second Pituitary surgery, more tumor on right side, most of my pituitary gland removed. Surgery unsuccessful, still have Cushing’s disease.

November 7, 2006- BLA …soon to be cured of Cushing’s.

Dec 2006/Jan 2007- Very sick due to another blood infection. Lot’s of adrenal crises due to infections. 3 blood infections to date.

November 2008- 2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back requiring permanent narcotic pain relief through a pain center, damage to soft tissues throughout my body, diabetes, high lipids, fatty liver (NASH), Osteopenia, I have no usable veins, they are destroyed due to the high Cortisol, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need, I had my period for 1 year straight because of lack of appropriate hormones after my surgeries so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working pituitary hormones any more at all. I must replace all pituitary hormones, except DDAVP. Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well.

June 21, 2009-Since writing in November I sat on the couch in severe AI until around September when I was put with a doctor that has been seeing Cushing’s patients for 38 years, he put me a on a very high dose of Dexamthasone and Florinef and forgot about me, he ended up with cancer and is no longer seeing patients. In the meantime, I got severe steroid induced Cushing’s and have had severe complications from it. I started falling from atrophied muscles and broke both hips, I ended up in a wheelchair, which I am happy to say I am out of now, had to have surgery on my left hip to pin it, it is still not healing, I am having absorption issues with calcium, iron, vitamins, minerals and meds. So I have to do my DEX by injections. We are now trying to find out why I am having absorption issues. I have a new endo at OHSU Dr.V and he is wonderful. He has brought my steroids down to a safe level and did it slow. He really seems to know his stuff as far as after care. I do not think he does the diagnosis process for Cushing’s. I would definitely go back to Dr.Ludlam if I had to go through it again. But I know there are many other great Cushing’s experts out there, this was just my experience. I know I will get better, but it may be a while. I am still at home handicapped, can barely go to the grocery store and I do not drive as I am on a high dose of Morphine. My goal is to get my pain under a 5 and be able to drive myself around. That is a good goal for now. Then on to finding out why my small town has so many tumors and starting a support group. I just need to get to a point where I feel I can be a good advocate for Cushing’s and right now I can’t. But that is the goal.

Nov 16, 2009

I am still not well, I have broken my ankle, have no idea how, woke up one morning and it was broken. I am almost down to my 1/2 mg of DEX and am happy about that. had 2 surgeries in Sep and Oct on both elbows for ulnar nerve decompression. The first surgery got infected and a week later I had sepsis, which they think I had a small bowel preferation that healed itself. I was ambulanced up to OHSU and was in AI. It was a very rare bowel bacteria running through my blood stream, I was very sick. I just want to get well, but for some reason I am going through one thing after another. I am praying that 2010 will be my year of healing and I will have a good quaility of life then.That is what I am counting on.

UPDATE January 23, 2016

2016: wow has the past few years have been a roller coaster. I don’t know dates because I’m having memory issues at 47 years old.

I have had 5 port-a-caths. I kept getting sepsis and every time they would take me to surgery and remove my port. Then place another when I was better. I have no veins that work. So I received IV port fluids 2-3x a week. I just recently had sepsis, when I get it I have a 50/50 % chance of survival. They removed my port and did not place another. So no more fluids which was for Pots. I had labs done through my port every 2 weeks. Now everything stopped. I am producing small amounts of cortisol. After a BLA.

Intermittently. I am just now starting to feel good for 2 weeks now. I have started the exercise program called T-Tapp. I love it. No jumping or hard moves. 15 min and that’s it. I am a grandma of 2 and one due any day.

So for now I hope I’m on the road to recovery at least the best I can.

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Kim (lil dickens), Pituitary Bio

March 31, 2015

MaryO Acromegaly, Adrenal, Golden Oldies, Hypothyroidism, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments , , , , , , , , Leave a comment

golden-oldie

 

March 2009
I was diagnosed in 1995 with hypothyroidism, after the birth of my son vie C section. This was my third Cesarean section. I knew I was gaining too much weight during pregnancy but no one would listen to me. I’ve had hypo for fourteen years now, with ongoing difficulties and no weight loss.

I became suspicious when I couldn’t get my thyroid disease under control and started moon facing. In 2003 my daughter noticed my buffalo hump. I tried to point it out to the doctor but to no avail. Said it was fat. I was tired, depressed and sick.

I have to note that when I was a child I cracked my skull open. My sister said I had clamps on my head. I cannot find anything else about it. I had severe headaches, poor appetite, skinny and fearful. Many emotional problems. I came home from school many times to have ice packs on my head for the headaches. I started to drink alcohol at about 13 yrs old, becoming an alcoholic until age 33. 20 years of drinking! I am now sober 18 yrs.

I am pursuing a diagnose for Cushing disease based on my symptoms and the huge hump on my neck. I’ve been really complaining for the last two years.

My newest PCP was the one who gave me a copy of a printout on Cushings. She is sending me to an Endo but who knows. 3 1/2 month wait to see Endo. Now, wouldn’t you know it, my hubby’s job looks like its going to be terminated in March, so my insurance will only be in for two months after that! I’ll be without insurance!

September 2009
I’m now in the process of testing after going through 2 more Endos and meeting a great Endo in Maysville, KY: Dr Holmes. “Wonderful, Good doctor “as we’d say in PA! I had went to one Endo here in PA and had two UFC24 test done and I showed high, but he just asked if I was stressed and sent me to Hershey. I heard Hershey Medical wasn’t very good for Cushies so I moved on to KY. I’m so glad I took the time and the money to go there. I will never regret that. It saved my life!

I feel so fortunate. Dr Holmes ordered more testing which I am doing now, and he looked over a Pituitary MRI which I obtained from the other Endo. Dr Holmes disagrees with the radiologist that my MRI was normal. BTW, my husband got another job that uses the same Union Insurance! I also have high GFI-1. He said I might have an Acromegaly.

Dec 2009
I am now diagnosed with Cushings and Acromegally. At this present time I have chosen my surgeon and am waiting for his approval for surgery and set a date to meet with him.

All of this testing and paperwork is time consuming and a lot of patients is needed. I am diagnosed during the holidays and this is really a slow process with many delays.

My symptoms are many, including that horrid buffalo hump. I feel really sick sometimes, and bloated like I am going to exploded. I have extreme fatigue. I also feel during my lows like I am just going to die, with waves of dizziness and a huge general weakness that I can hardly turn over in my bed. I thank God that I do not hurt. I am just stiff in the knees and I can’t get up very well from a squat or from sitting too long. My emotional state is awful, from rages to deep depression.

I suffer/suffered from TMJ ,Depression, Mood Swings, Carpal Tunnel Syndrome (2)with surgery, Weight gain, Headaches and Vertigo- dizziness, teary right eye, Teeth gapping, Cavities, infected Root Canals, Hypothyroidism, Hashimoto’s Disease, Tonsillectomy, Costochondritis, Heart Murmur, Tortuous Aorta- a twisted heart valve, shortness of breath, Tennis Elbow, Irritable Bowel Syndrome, Dysentery, Impotency, lost periods, Osteopenia, Ovarian Cysts, 3 C sections, Joint stiffness, chronic rectal itching, Hemorrhoids, Heel Spurs, Ganglion foot cyst, MRSA.

I am very afraid of the Acromegally. I have changed sizes. I was a petite 10, I am now a size 22. I do believe I have gained height by 1–1 ½ inches. My wedding rings size has changed twice and now I can no longer wear them. I suffer chest pains from Costochondritis- inflammation of the rib bone area. As the days go by without treatment, I swear I can feel the damage that is being done to my organs. I suffered terrible dental problems with major infections and I also had an awful infection in my foot from a minor injection for a cyst. I ended up with surgery to clean out MRSA and had two areas of incision! I also show a twisted Aorta valve, which I feel is from Acromegally.

I succeeded in obtaining my diagnose of Cushings Disease with Acromegally from Doctor Holmes through UFC tests (Urine) and blood work for IGF-1, CRH testing, and Glucose Suppression Tests. Salvia testing didn’t work for me. I feel I have problems with my saliva in general, perhaps a malady not yet diagnosed, but nevertheless is present. I was tested once with saliva that proved I had a very low acidic value, and the comment from the lab was “could be due to cortisol access!” 5 years before I was diagnosed with Cushings! I am now waiting to meet my surgeon, Dr Jho and set up a surgery date.

This site is invaluable to anyone suffering. The amount of information can be overwhelming because it is so plentiful. The forum is wonderful. Up to date information, wonderful people who give help, information; support and Hope!

Update April 5, 2011

I had my 1st pituitary Surgery Jan 28th, 2011. My tumor stained positive for Growth Hormone but did not stain for ACTH as suspected. i was on cortisone for less then 3 months, for I was told to wean quickyl when I was actually gaining weight and aquired more stretch marks. I had some relief…such as my tongue had swellling the went down some, my hemmroids disappeared overnight, and my earlobes went down from being swollen so big you couldnt see my post earrings. And that horrible feeling I was being squeezed to death. But, after tesing one UFC and some other blood labs, I was found to be high with my UFC24. It was a 53 (0-50). Even though my doctor said I was cured, I begged for another UFC. He gave me a lab slip and said return in 6 months. I went home and did the lab and it came back 57 (0-50). He made a note to discuss this when I returned in the fall. I knew I wasnt cured. I actually gained more weight then ever and grew more in the waist line. I tried to get help at John Hopkins and Allegheny General Where I had my surgery with Dr Jho’s Endo, but to no avail. They told me to go home and forget about Cushings.
it is then I called Dr Ludlaum with photos and a note explaining my surgery and testing. I went to Camp Cushy in Seattle, Washington @ Swedish Medical Center. 5 Days testing proved successful. I had high Midnight serums, high UFC and High ACTH. Though not quit enough for a diagnose , I went home with a test kit to continue testing. I have just completed my third kit and am waiting for result. Dr Ludlam said this is it for home testing an he will come to a conclusion soon after this. I hope that I will get an ok to have another surgery. I am now suffering more problems …I am now a pre diabetic. Dr Ludlam found that I have a enlarge left Adrenal Gland. I have tested high in all areas now, including one high saliva! ( surprised me! ) My ACTH has been consistantly high ( about 10 units higher than the top limit) and I had a few more UFC highs. I definely feel sicker, unable to clean my house, run the sweeper, wash clothes or even take a walk very far. I get extremely out of breath. I suffer high and very low BP. (92/49/75) I am anxiously awaiting Dr Ludlam’s final say in my matter.

Also, I am dealing with my son who is 16 and is now in testing for Cushings also. He is showing signs of this dreaded disease!

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In Memory: Alena Renea Weeks Greenhill

March 30, 2015

MaryO Adrenal Surgery, In Memory, Pituitary, Pituitary Surgery, Treatments , , , , , , Leave a comment

in-memory

March 30, 2007

AIKEN – Ms. Alena Renea Weeks Greenhill, 31, of Aiken, died Friday, March 30, 2007 at her residence. Funeral services will be held at 3:00 PM Wednesday in the Shellhouse-Rivers Funeral Home Chapel. Reverend Robert Rish will officiate. Interment will follow in the Clearwater Branch Baptist Church Cemetery.

Pallbearers will be Joshua Weeks, Jim Rutland, Morgan Weeks, Greg Smith, Jimmy Jones, and Charles Jones.

Renea was born in Aiken, a daughter of Gail Weeks, Aiken; and James “Randy” and Debbie Weeks, Aiken. She was a lifelong resident, and worked as a medical assistant at the Women’s Health Association.

In addition to her children, Olivia Ann “Libby” and David Randall “DJ” Greenhill, survivors are a sister, Dawn Rutland (Jim) Aiken; a brother Joshua Weeks (Melissa) Aiken; Nikki Weeks, Aiken, Danielle Smith, Aiken; Greg Smith (Maria), Aiken; Kasey Smith, Aiken; JerriLynn Smith, Lincolnton; a maternal grandmother, Joyce Weeks, Aiken; a paternal grandmother, Harriette Weeks, Aiken; twelve nieces and nephews; and her special friend, Jimmy Jones, Aiken.

A niece, Taylor Weeks, and a grandfather, Gene Weeks, preceded her in death.

Please visit Renea’s online memorial at shellhouseriversfuneralhome.com

The family will receive friends at the residence of Joshua Weeks, 2334 Wire Road, Aiken on Tuesday from 12-5 PM and from 6-8 PM Tuesday evening at Shellhouse-Rivers Funeral Home, Inc., 715 East Pine Log Rd., Aiken, SC.

From my email:

Mary, I got a call tonight from Renea Greenhill’s mom who told me that Renea died Friday night. Renea was from Aiken, SC and was on the board until she did not have a computer anymore. She had tried to get groups together in SC. She had left a note that if she died that her mother was to call me and I was to let everyone on the Cushing’s board know of her death. Her mother had seen her on Friday night and talked with her later. Her boyfriend came over and found her on the floor. He called her mother who told him to call 911. He did and her mother got right over there. 911 got there, but did not attempt to revive her and she was to be an organ donor and the organs could not be used. She was dead. An autopsy found nothing wrong with her physically. I told her mother that I bet she died of an adrenal crisis and told her mother to call the coroner to have them do tests for that. She was very appreciative of my thinking of this and was going to call. Renea had been to see Dr. Laws for surgery several years ago. She ended up with meningitis from surgery there. She ended up in critical care at the Medical University of SC. Later had her adrenal glands removed. She had “beat” cushings her mother said. She had lost over 300 lbs. She has two young children who are now without a mother. Her husband had divorced her several years ago, so she was rearing the children as a single mom. Please pass this on to everyone for me for Renea at her request if this happened to her. She loved her Cushing’s friends. Below is her obit. Memorials are to be made to the Cushing’s group.

On the message boards:

• I knew Renea – I met her the Tennessee CUSH Conference. What a shame sad.gif

• I am sorry to hear of Renea’s passing…thank you for sharing with us. Condolences to her family, friends and loved ones.

• So very young — so very sad.

• My Goodness, she was so very young. This is a startling reminder how serious an adrenal crisis can be. Thank you for carrying out her wishes to let us know.

• Oh my…

I talked with Renea a few months ago. It may not have been adrenal crisis, but it may have, as Renea, after her BLA, didn’t need replacement. She hadn’t taken hydro for some year(s), and yet her cortisol was always “0”. The doctors would just scratch their heads.

Thanks for posting Mary. My prayers are with her and her family.

• I am so sorry to hear about this. My prayers go out to her children and her family. What is scary to me is the fact that, considering her history no one there thought to check to see if an adrenal crisis was responsible.

• How terribly sad. And the two young kiddies too. She sounds a remarkable woman. Very sad indeed.

• I am absolutely heartbroken over Renea’s death. She was far too young and she already suffered so much. I hope her kids know how much she loved them. I have been struggling with my own health issues lately and her death brings home just how dangerous our lives can be.

I hope she is at peace and that her family is able to cope with her death. I am so very sorry that we lost such a great person. Renea was a great source of strength for me and I will miss her dearly.

• Very sad news! My thoughts are with her family and her children.

• Thoughts with her family and children. Her mother must be devastated. I hope she can read the posts and know she’s thought of.
Very sad for these children to lose their mother at such a young age.

• My deepest condolences to her family and friends.

• How very sad. So young, and had already been through so much.

My thoughts are with her family & friends

• So very sad. So young , & so much still ahead of her.

In my prayers

• I wonder if they checked her for Nelson’s also? She looks very tan. My deepest condolences to her family and friends.

• Such a sad ending to a beautiful life. Sending peaceful thoughts to her family..

• It is very sad to fight that hard… and then the family does not know why… my thoughts and prayers are with them… It breaks my heart to think that she had to suffer so much, but she must have been such a strong, brave person to go through it. My prayers are with the family..

• How sad – she was so young. My sympathies to her children and all of her family.

• I’m so sorry to hear that another Dear Cushie was lost, I remember Renea from the old board mostly and remember how, very sick she was after her surgery, as others said she was way too young, and I’m sure her family and friends will miss her so very much. Someone we have to get all doctors on board to realize how very serious this illness is, not just a few who are out West, we all know they are good doctors, but we need some good ones in the Midwest, in the South, in the East, I know there are some, but we need more pit centers and more pit spealist on understands the devastating and life or death realality some of these pituitary tumors or adrenal tumors can cause.

I’m so sorry to learn on this happening to a dear cushie I remember from the boards.

• My prayers to her family. May God bless and keep her children. I can’t imagine how hard this is for them.

In Memory: Deloreese Daniels Owens

March 16, 2015

MaryO In Memory, Pituitary , , , , Leave a comment

in-memory

March 16, 2002

Deloreese Daniels Owens, daughter of “Touched by an Angel” star Della Reese, was found dead at her Los Angeles-area home Wednesday. She was 41. The cause of death was not disclosed, but Owens suffered from a pituitary dysfunction that made her prone to infections.

From 2002:

“Touched By a Pituitary Tragedy”

Actress Della Reese has spent the last eight years starring on the hit TV series “Touched by an Angel.” But earlier this year Reese, 71, was touched by tragedy. In March, her 42-year-old daughter, Deloreese Daniels Owens, died from complications stemming from pituitary disease. Owens left behind two children, ages 19 and 21.

Understandably, Reese has been too distraught to discuss her death, but in an interview with the Pituitary Network Association member and author Ken Baker, Reese talked about the painful experience, sharing her frustration with the lack of awareness and knowledge of pituitary disorders. “When it happened, I thought, ‘It’s such an odd thing to die from,’ because pituitary problems aren’t something you hear about,” Reese said. “It makes it harder because you don’t understand what happened. It seemed so strange and hard to explain. It still is, to be honest.”

Reese said that her daughter’s pituitary gland — the body’s “master gland” — had begun malfunctioning about six years ago. Her Los Angeles-area endocrinologist prescribed various medications, but, still, the gland’s functioning was severely impaired. She continued with hormone injections and other drugs. “She had been treating it for some time,” Reese said. “It seemed fine and the medication seemed to be enough.”

But Reese said her daughter’s death came suddenly this spring soon after her daughter caught a cold. “Her gland stopped — period,” she said. “As you know, when the gland stopped, her immune system stopped too.” Reese believes strongly that the public must have more information about pituitary disorders. She praised Ken Baker for his 2001 book, “Man Made: A Memoir of My Body,” in which he told the story of his battle with a prolactin-secreting pituitary tumor. Reese also applauded the educational outreach efforts of the Pituitary Network Association, which has helped thousands of patients and their loved ones cope with pituitary disease. “People need to know more about the pituitary,” she said. “It is so important.”

Despite the tragedy, Reese, an accomplished gospel singer who has moonlighted as an ordained minister since the late 1980s, has found spiritual peace with the loss of her daughter. “She was in a very good place in her life,” Reese said. “She was happy. She had established a relationship with God. It wasn’t a good time for me, but she was at a good place when she left.”

Accidental death verdict on 40-year-old mum

March 15, 2015

MaryO In Memory, Pituitary , , , Leave a comment

in-memory
A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother.

Marie Richardson, of Bryn Hafod, died in March at the Maelor Hospital.

A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body’s hormonal system.

The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge.

Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall.

Contributory factors in Mrs Richardson’s death had been Cushing’s disease, a very rare condition involving a hormone disorder, and bronchial pneumonia.

The court was told by Mrs Richardson’s husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache.

Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital.

Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots.

She had been given a scan involving the pituitary and there was no evidence of a tumor.

It transpired the post-mortem had found Mrs Richardson did have a tumor, which had experienced bleeding.

Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still.

Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment.

Dr Stanaway said it would have to be a balanced decision but he felt that she would have been.

Legal representatives for Mrs Richardson’s family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson’s treatment while at the Maelor.

He said that with hindsight the only potential other avenue may have been if she had been given steroids.

But Dr Stanaway stressed he doubted this would have been successful, emphasizing Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her.

Recording his verdict of accidental death Mr Gittins emphasized: “This is not an indication of responsibility, blame or judgment.
“That is not my jurisdiction.

My very sincere condolences go to the family.”

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In Memory: Erica Michelle “GaGa” Meno

March 11, 2015

MaryO Adrenal Surgery, In Memory, Pituitary, Pituitary Surgery, radiation, Treatments , , , , , , , Leave a comment

in-memory

Erica was a fellow Cushing’s Disease survivor. She had been through pituitary surgery, radiation, and a BLA in an effort to receive her cure.

I didn’t know her myself, and I don’t know if she was a member of the Cushing’s Help boards but it’s so depressing to know that we have lost another so young from the damage done by this horrible disease.

Erica’s official obituary: http://thomasjustinmemorial.com/tribute/details/575/Erica_Meno/obituary.html#content-start

Erica Michelle Meno returned to her heavenly home on March 6, 2015. Nicknamed, “GaGa,” she was born and raised in Cincinnati, Ohio. She was 38 years old. She graduated from Sycamore High School, Northern Kentucky University and Eastern Kentucky University. Erica had a zest for life and just loved being with her family. She loved sports of all kind and loved to cook. She was an avid reader and volunteered much of her time and many years at The Ronald Mc Donald House.

In addition to her family she had a great love for her pets especially her lively dog, Chesney. She is preceded in death by her grandparents Anthony and Mary C. Meno and Joseph and Katherine Terzo and Aunt, Karen Meno and Uncle, Bruce Ficke.

She is survived by her parents Michael and Mary Meno, devoted brother Ryan Meno and sister-in-law Melanie, loving niece and nephew, Leah and AJ Meno, her aunts and uncles: Frank and Terri Terzo, John Terzo, Judy (Terzo) and Chris Tocatlian, Victoria Ficke and Teri Zingale, cousins: Joseph and Kristen Terzo, John and Lesli Terzo , Amanda (Terzo) and Mike Stewart, Dominique and Natalie Tocatlian, Kati (Terzo) and Chris Mottershead, Dana (Terzo) and Omar Qureshy, Joe Granato, Kelly Ficke, Alex and Melanie Ficke, Vincent, Sam, and Remy Zingale. Erica was deeply loved and will be missed and remembered by many friends and family. Visitation will be 9am until time of Mass of Christian Burial at 10am on Friday, March 13th at The Community of the Good Shepherd Catholic Church, 8815 E. Kemper Road, Cincinnati, Ohio, 45249.In lieu of flowers, the family has requested donations may be made to the Ronald McDonald House Charities in Erica’s memory.https://www.rmhcincinnati.org/help/donate/donate-online or you may also donate by check, made payable to RMHC – Greater Cincinnati, and mailed to Ronald McDonald House Charities, 350 Erkenbrecher Avenue, Cincinnati, OH 45229. Thomas-Justin Memorial serving the family. – See more at: http://thomasjustinmemorial.com/tribute/details/575/Erica_Meno/obituary.html#content-start

~~~~~~

Some of the comments from other Cushies:

My condolences to Erica’s friends and family and to our Cushie community.I too am afflicted with Cushings and a part of me dies every time I lose another fellow Cushie!The world just got a little bit dimmer without her beautiful soul!May she rest in peace and may her memory live on.She was a wonderful person.

~~

Dear Meno family, My name is Melanie and I’m a survivor of Cushing’s Disease. Your daughter and I corresponded a few times on a message board dedicated to this disease. Please accept my heartfelt condolences at the loss of your beautiful daughter. Every time a member of our Cushing’s Family leaves this earth it sends a wave of sadness throughout the world-wide members who live with this disease daily. The tribute you’ve written about Erica is lovely and indicates what a beloved daughter of God she is and how special she is to you and your family. I believe our lives continue on in the next life and believe Erica is now free from pain and sorrow. May God grant you peace and comfort in the days ahead. With love,

~~

My prayers go out to all who knew and loved Erica. Having had surgery for Cushing’s Disease and dealing with it’s consequences myself, I am inspired by her strength and determination to keep pushing forward for her cure. My heart aches that she was taken so early, and I pray she can now rest from her struggles and is at peace.

~~

I wanted to express my sincere condolences to Erica’s family and friends at this difficult time, my thoughts and prayers are with you. Sadly I never got a chance to meet Erica in person, we met though Bobbi Phillips on FB. We both have Cushing’s disease or as Erica called us Cushies and there aren’t many people that understand, it was a comfort to have someone that does. I will miss hearing from her, she will hold a special place in my heart. God Bless Erica!

~~

 

Lor, Pituitary Bio

March 9, 2015

MaryO Golden Oldies, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , Leave a comment

golden-oldie

From Tuesday, June 9, 2009

9-07

COLON SURGERY: 1’ colon removed (pre-cancerous pulup/tumor removed.)
10-07

HEAD/NECK/SHOULDER/THROAT PAINS: hundreds of daily: “pops” in neck, terrible stabbing pains in base of skull, throat, shoulder, with hundreds of random screams of “ouchhh” daily for months. Tests or Treatments tried: chiropractors, ibuprofen, hot packs, x-ray on neck normal, physical therapy, MRI on neck normal
1-08

BODY JOLTS & INVOLUNTARY MOVEMENTS START: electric jolt sensations and myoclonic type jerks and involuntary movements – mostly when relaxed. Movements will stop if I get up and move around. These come with or without loud screams, gasps or other vocal noises. Tests or Treatments tried: EMG normal, MRI of head and normal, pain meds no help, oral steroid by Physiatrist no help,
1-08

SLEEPING PROBLEMS: wake up every night and sometimes stay awake for many hours – happened entire 2008, but 2009 was better.
2-08

MOUTH/JAW/TONGUE START: randomly the tongue tingles or twtiches, the jaw & cheek have pain (like someone is pulling off my face), the mouth/throat/tongue/and/or gums get ice cold, the mouth waters for hours. Tests or Treatments tried: more blood work normal, except a 7x higher than normal inflammation which neuros said had to be a lab error. Got steroid shot in head where the stabbing pain is. EEG recommended due to small seizure like movement when injecting the steroid.
4-08

MUSCLE TWITCHES START: randomly, different muscles twitch, hundreds of times daily (it is like body is making popcorn). Tests or Treatments tried: took a coupld stress free vacations. (I now its not stress related anyway but since the doctors cannot diagnois me, they don’t know what else to think. No help – same symptoms. Seen Neurologists with no answers. Got another steroid shot in head.
8-08

KNEE POPPING STARTS: just like neck from 10-07, one day it started to “pop” with pain hundreds of times daily. This made it hard to walk for months. Tests or Treatments tried: knee x-ray-normal and a special Lymes Blot test in California = negative.
11-08

Another Neurologist: Repeated inflammation test=normal.
12-08

Rheumatologist ran more blood test=normal
OTHER SYMPTOMS IN 2008-2009:

INVOLUNTARY MOVEMENTS / TWTICHED CONTINUE

ALL MOUTH SYMPTOMS CONTINUE

GASPING FOR AIR (take in a huge gasp of air, happens randomly, a several times daily)

LEG WEAKNESS / PAIN

INSIDE ELBOW AND MIDDLE FINGER, LOWER BACK AND BIG TOE PAIN

FATIGUE

HIGH PULSE 130+ doing nothing

HIGH BLOOD PRESSURE 145/97 average

HEART HURTS (just occasionally)

EAR ACHES/RINGS (CT of sinus area was normal)

NIGHT SWEATS (occasionally / only on head/neck area)

NECK HUMP

SKIN (acne, ichy, sweaty)
1-09

Tests or Treatments tried: Tried depression pills for 2 months with no help. I do not believe I have depression/anxiety issues though.
3-09

Tests or Treatments tried: Went on another fun trip to Disney World – had very strong symptoms most days
3-09

WEIGHT GAIN: (necklace didn’t even fit because my neck / stomach is getting fat).

Cortisol level checked and was high, so Endo specialist was recommended).
5-09

DIAGNOSED WITH CUSHING’S

4x6mm tumor on pituitary and high cortisol level. Scheduled for consult/surgery at Mayo in July.
7-09

UNDIAGNOISED and called Borderline Cushing because symptoms not are typical of Cushings.

They reviewed MRI – says its either a tumor or a rathke’s cleft cyst

CHEST XRAY – normal

EKG – normal

EMG – normal

ENT Dr. – normal exam – cannot explain mouth symptoms

COLONOSCOPY

MAMMOGRAM

DERMOTOLOGY – skin cancer diagnosed, shaved and treated

MRI on neck & spine- normal

EEG – normal

CERVICAL SPINE MRI – normal

MOVEMENT LAB: my movements don’t fall into the myroclonis catagory because I move faster than 100 milliseconds (?), even though they are a split second movement

SENSORY PROVOKED POTENTIAL NEUROLOGY LAB – normal

DEX SUPPRESSION & CRH & CORTISOL TEST, did not suppress, and had high and normal cortisol

OTHER URINE AND BLOOD TEST

PARANEOPLASTIC PANEL blood work – results show striated muscle antibodies which is either a neuro, myasthenia gravis, or a hidden tumor so get a lung scan recommended
9-09

LUNG/ADRENA CT SCAN: did not show lung tumor but showed enlarged or nodules on both adrenal glands
10-09

blood test & urine- (did 24 hr urinary metanephrines and fractionated catecholamines and blood aldosterone concentration and renin activity – all normal) (cortisol at highest end of normal)
11-09

new MRI – same as before
12-09

new CT of adrenals – no change. Await new results of striated muscle antibody test.

Dr recommends I wait 6 months to see what changes.
6-10

bi-lateral neuro angiogram confirms Pit. Cushings
Pituitary Surgery May 12, 2010
Back to work after 2 weeks. Its been 1 month since surgery and muscle pain and weekness is gone, heart pounding gone, high blood pressure down, but still have unusual symptoms such as involuntary movements and mouth symptoms. Still have enlarged adrenals.

 

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Cushing’s Awareness Challenge 2015

March 9, 2015

MaryO Adrenal, Adrenal Insufficiency, Pituitary, Success Stories, Undiagnosed , , , , Leave a comment

Not a bio but folks who write bios might like to participate!

 

awareness

 

The Cushing’s Awareness Challenge is almost upon us again!

Do you blog? Want to get started?

Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Fourth Annual Cushing’s Awareness Blogging Challenge.

All you have to do is blog about something Cushing’s related for the 30 days of April.

There will also be a logo for your blog to show show you’ve participated.

Please let me know the URL to your blog in the comments area of this post or an email  and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/)

The more people who participate, the more the word will get out about Cushing’s.

Suggested topics – or add your own!

  • In what ways have Cushing’s made you a better person?
  • What have you learned about the medical community since you have become sick?
  • If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients?
  • What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that.
  • I have Cushing’s Disease….(personal synopsis)
  • How I found out I have Cushing’s
  • What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
  • My challenges with Cushing’s
  • Overcoming challenges with Cushing’s (could include any challenges)
  • If I could speak to an endocrinologist organization, I would tell them….
  • What would I tell others trying to be diagnosed?
  • What would I tell families of those who are sick with Cushing’s?
  • Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured.
  • What will happen if I’m not cured?
  • I write about my health because…
  • 10 Things I Couldn’t Live Without.
  • My Dream Day.
  • What I learned the hard way
  • Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
  • Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl#.VPGZQlPF9A8 and fill in the parts of speech and the site will generate a poem for you.
  • The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?
  • Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
  • 5 Challenges & 5 Small Victories.
  • The First Time I…
  • Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
  • How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially?
  • Why do you think Cushing’s may not be as rare as doctors believe?
  • What is your theory about what causes Cushing’s?
  • How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been
  • What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals?
  • What new goals did Cushing’s bring to you?
  • How do you cope?
  • What do you do to improve your quality of life as you fight Cushing’s?
  • How Cushing’s affects children and their families
  • Your thoughts…?

Sheara (sbailey), Pituitary Bio

March 8, 2015

MaryO Cyclic, Hashimoto's, Other Diagnosis, Pituitary, Pituitary Surgery, Success Stories, Thyroid, Treatments , , , , , , , , , , , , , , , , , , , 1 Comment

golden-oldie

 

I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.

I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto’s Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let’s check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.

They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields…they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.

Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.

In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing’s as a possibility. He had me repeat the salivary testing for 5 days…all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.

I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.

So I am home on the mend 1 week post op…glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!

Maybe it is my imagination, but I already feel like my “old self” back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.

Thanks for listening!

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Elaine, Undiagnosed Bio

March 8, 2015

MaryO Golden Oldies, Other Diagnosis, Thyroid, Undiagnosed , , , , , , , , , , , , , , , , , , , Leave a comment

golden-oldie

 

 

 

Hi my story is so much like all the others that I have been reading on this site.

For the last several years I have been feeling bad, I am tired all the time. I have gained 50 pounds. I have always had a low body temperature and feel the cold more than most people;however in the last 3 years or so I can’t take extreme heat either. I am always either too hot or too cold. Sometimes I sleep for 12 hours and other times I do not sleep at all.

This year I have had people tell me that my personality has changed I am much more aggressive than before. I also look bloated around the face and belly. People keep asking me am I pregnant because my stomach is huge!

In the last 12 months my hair started to fall out. I got an peptic ulcer, been diagnosed with slow digestion, sleep apnea and arthritis of the spine. I used to be able to walk 4 miles in 40 minutes but now I can barely walk a mile. My short term memory is bad and getting worse all the time. I find it really hard to focus. I have had 2 upper respitory infections in the last 10 months which is unusal for me. Also I have dermatitis on my back which just started 4 years ago.

I thought maybe I had a thryoid issue so I went to my GP who sent me for bloodwork. She tested my TSH, T3, T4, ACTH and Cortisol. My TSH’s came back normal (2.7) but my ACTH and Cortisol is high. I don’t have diabetes or high blood pressure although my stress level is through the roof most of the time. Anyway my doctor thought that the ACTH and Cortisol was too high and she asked me if I was getting more headaches. I have always suffered from migraines but in the last couple of years the headaches have gotten worse. She thinks I may have Cushings disease.

My doctor was so concerned that she is sending me for an MRI and I got to a referall to an endo who I will see in two weeks. I will post an update as soon as I know something.

 

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