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Kim M (MerryKim), Adrenal Bio

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Adrenal glands

59 years old female with Cushing’s since 12 years old. Right adrenalectomy 3/22/21.

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Sherry C, Pituitary Bio

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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

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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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Terri (Terri), Adrenal Bio

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adrenal-location

 

I started having issues in my 30’s. I noticed my skin getting splotchy and my periods became horribly painful and irregular. I had migraines and started gaining weight. I went to my doctor who said I was just getting older (again 30ish). The weight kept creeping on, the periods got worse. Again I asked my doctor , again it’s part of aging. This went on for years. I finally changed doctors and ended up with a hysterectomy, the doctor assured me this would fix things. It didn’t.

A year after the hysterectomy I get my first ambulance ride from my doctors office to the ER. They thought it was my appendix . The ER found nothing so they sent me home. I have sever nausea I , body shaking chills and sever side pains. They sent me to a gastroenterologist who ran tons of test and found nothing. BUT as they were reviewing my latest test results by phone the mentioned that my adrenal cyst hadn’t grown any. I said what adrenal cyst? They said throne that was in the ER report. This had never been disclosed to me. They referred me to a urologist? I skipped the urologist and looked for a endocrinologist. My symptoms had multiplied in this time. I now had a fuzzy face, fuzzy vision, more weight and stomach tenderness to the point it hurt to wear some clothes.

I saw my endocrinologist and he ran a ton of test and came back with Cushings. I just finished my second MRI, this time they are looking for a pituitary tumor. I am waiting for results to see if I have the pituitary issue as well as the adrenal gland cyst. Apparently my adrenal cyst was large enough to cause cancer concerns , but luckily doesn’t act like cancer. Happy that! I am now in my 40’s and it has taken eight years to get a diagnosis or someone to take me seriously! So don’t take NO for an answer!

 

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In Memory: Shianne Lombard-Treman, March 28, 2018

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Shianne was a Cushing’s Survivor who had just published a book, Be Your Own Doctor

After 17 years as a personal trainer, I ran into health problems of my own, eventually having a name put to it…“Cushing’s Syndrome,” a rare adrenal disease. Tumors were growing on my adrenal glands over-producing Cortisol, your stress hormone.

With 24/7 false fight-or-flight stress signals, the body goes haywire, producing horrific side effects such as weight gain around the midsection and back of neck, diabetes and blood sugar deregulation, inflammation, muscle deterioration, frail bones, hair loss, poor immunity, infertility, moonface, buffalo hump, extreme fatigue, brain fog, confusion, severe anxiety/depression and chemical imbalances.

Being constantly diagnosed as “healthy” caused me to be told, when I was finally diagnosed correctly, that I had maybe five years to live. Misdiagnosis can be a killer.… It is now my personal mission and obligation to help those suffering from any chronic illness that steals your joy, and bring awareness to Endocrine Disorders. From my journey through Cushing’s to Addison’s to recovery—from triathlete to barely being able to dress myself and finally to recovering into a stronger person I never knew I was.

 

 

Shianne Lombard Treman took her life on Wednesday, March 28th after a long struggle with depression brought on by the removal of her adrenal glands to the advancement of Cushing’s Syndrome. 

Shianne is survived by; her husband Timothy Treman, fur babies Molly & Charlie of Baltimore, her mother Geraldine Lombard, sister Danielle Huston, Husband John Huston and their 6 children, Caleb, Alaina, Juliana, Jeremy, Ashley, Aaron of Tawney Town, Brother Michael his wife Sue and brother Enzo and partner David of San Francisco and New Orleans. 

Shianne was born on May 3, 1977. She graduated from Towson University with a degree in Kinesiology. She used this degree to become a personal trainer. She loved helping people get healthy and ended up training two of the “Biggest Losers” on the reality TV show. This led to her being on Oprah as well as Dr. Phil to talk about fitness and health. 

She started her own business as a trainer in San Francisco for 5 years. It was in San Francisco that she met her dashing husband, Tim Treman. They were married in Bethany Beach Delaware in May of 2013 and moved to Baltimore in June of 2013 joining the O’Donnell Square neighborhood.

Among her accomplishments are a Black Belt in Taekwondo, multiple marathons, Tri Athlons and her work with charities.
Shianne changed lives. So many people have come forward to say that she changed their life by teaching them healthier ways to live. She inspired so many that when she was diagnosed with Cushing’s disease, a rare condition, she went into research mode to find out everything she could so she could keep doing this work of helping others. Again, she brought her knowledge of health into play by writing a book about the experience to help others with this disease. “Be Your Own Doctor” explains her battle to maintain fitness and recovery which had never been previously explored for folks dealing with Cushing’s. She was asked to speak at the Magic Johnson conference on rare diseases and in Congress about Cushings. She was also asked to speak at the National Institute of Health Conference. Unfortunately, that was never to be. Cushing’s took more than just her body, it slowly took her mind and spirit.

She was an extraordinary person who lived an extraordinary life… a bright star that burned out too soon.

Viewing will be from 4-7PM Wed April 4th at Connelly Funeral Home of Dundalk 7110 Sollers Point Rd 410 – 285 – 2900.
Reception from 7:30- for close family and friends at Sparrows Point Country Club 919 Wise Avenue, Baltimore MD 21222

Her obituary can be read here.

 

Shianne F. Lombard-Treman
May 03, 1977 – March 28, 2018

Lisa (Lisa75), Adrenal Bio

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adrenal_glands

 

Diagnosed with Cushing’s Syndrome after a tumor was discovered on my adrenal gland.

I was lucky to have a kidney stone (never thought I’d say that! ) prompting an xray and scan. That was when the tumor was discovered.

My surgeon quickly recognized other signs that I had this, and began running several tests.He also referred me to an endocrinologist who ran additional tests. All tests confirm I was over producing cortisol and my ACTH was fully suppressed.

 

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Lisa B (Lisa/FNP2B2017), Adrenal Bio

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adrenal_glands

 

Hello,

Where do I start? I have had Cushing symptoms since the late 1990″s. I was tested for cushings and was told that I did not have it.

Then in 2007 I was diagnosed with a tumor in my adrenal gland, mind you I still had symptoms off and on since the 90’s. I went to every endocrine in the Fredericksburg area and was on the OR table to have my adrenal gland removed when the Endocrine said that Cushings was not completely ruled in as what was going on with me, despite 3 24 hour urines showing elevated cortisol levels.

Then I went to this doctor then that doctor…….still saying they couldn’t confirm my diagnosis. In October 2007 I was admitted to the hospital with a pneumonia and did an MRI of my head (again) because I was having severe headaches which showed a lesion of some kind.

After 6 weeks of IV antibiotics and a repeat MRI I decided that I should go see a neurosurgeon. As soon as I walked into his office and never saying a word with medical records in my hand he said “Have you ever been worked up for something called Cushing Syndrome? I replied yes and he said you are very sick and need to have it taken care of and sent me to Georgetown Hospital in Washington DC….where I saw a surgeon and had my right adrenal gland removed 12/29/2008.

I have been pretty healthy until about 18 months my primary doctor was concerned about my heart rate being so high and my brother had just had a quad bypass surgery and sent me to the cardiologist. My heart rate has never been lower than 100 since I can’t remember…..and back in March 2014 I started having weakness going up the stairs, then in September my hips and back started hurting and I was having problems falling asleep and staying asleep.

My HbgA1c was 13.7 and I could not figure out why my blood sugars were spiking despite being on a diet and insulin. My cortisol level was normal in October. I started a really strict diet and not cheating the week of Christmas…..yes I know crazy…..I was only eating veggies, protein and 2 fruit servings a day…to detox my body….I gained 6 pounds.

When January came and I had to see my cardiologist for a follow up my heart rate was 128 and I i had gained 17 pounds in four weeks and guess where it all was…..my abdomen…..I felt like my Cushings had been causing havoc on my body. I was noticing the thin skin and bruises that wouldn’t heel. But I was thinking this can’t be returning until my cardiologist ordered that dreaded 24 hour urine and my levels were 98….2 times the normal….

I just did a repeat last week and had a MRI of my abdomen which the urine was guess what positive for elevated cortisol and the real shocker came today when my doctor called and said my MRI showed both adrenals….but how can that be I had the right one removed in 2008 that had a 4cm tumor in it??? My doctor is wondering if there was residual tissue left behind and what seems to be an adrenal is really a tumor??? Has anyone experienced a re-growth or Cushings for a second time….

My doctor is trying to get me into Georgetown asap because obviously the beast has returned.

Thank-you for your support and understandings in advance!!!!!

Lisa

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Jill (Jillleesmith), Adrenal Bio

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adrenal-glands

 

Cushing’s Syndrome
Addison’s Disease

After I had my daughter in 1995, I started gaining weight. I went from 110 pounds to over 200 pounds in a year. I had so many symptoms and was told to quit eating. My family wondered what happened to me. I never ate much. I was always the smallest one. One doctor even wrote me a prescription to get a dog. Over the course of 10 years, I was told I had possible MS, high blood pressure, diabetes, weight gain, severe depression resulting in several suicide attempts, hallucinations, declining vision, stress, severe fatigue, inability to work, divorce, personality disorder, inability to walk the stairs or walk for that matter and numerous others.

I went undiagnosed for 10 years. I was home sick one day on September 9, 2006. I was watching Mysterious Diagnosis and saw a woman with my symptoms. She had Cushing’s Disease. She turned out to be Sharmyn McGraw, a friend and mentor. I made an appointment for the next day. I asked my doc to test me for Cushing’s. I was diagnosed with multiple tumors in each adrenal gland called Cushing’s Syndrome. I was literally on my death bed. I was unable to care for all my kids and had given my cousin custody of my oldest son and my ex was given full custody of my daughter. I did manage to care for my son Gavin, who actually took care of me. Riding his bike home from school to make sure I was ok and riding his bike home right after school to take care of me.

I went through many different testing including vein catheterization to see which adrenal needed to come out first. I begged my endo to just take them both but with that it would mean I would have to be on steroid replacement everyday for the rest of my life in order to sustain life. I had surgery on November 14, 2006 to remove my left adrenal gland. I lost 45 pounds in 1 month but all of a sudden I was gaining weight once again. It was found that the other tumor riddled adrenal gland needed to come out.

On February 14, 2008, I had my right adrenalectomy. This was an even more difficult recovery. I was hospitalized for 15 days. Resulting in Addison’s Disease, I am unable to work. I lost my home, my kids, my animals, my car, my life. I have not been able to return to work and am on disability. I am just surviving.

The reason for this letter???? First, I want to bring awareness to these very rare life-threatening diseases, Cushing’s Syndrome and Addison’s Disease. My body has never recovered from the extreme weight gain and weight loss. The overproduction of cortisol for 12 years, has caused irreversible damage to my body. I have lost 40 pounds. My stomach hangs and gets in the way. I could never be intimate with anyone because of how my body looks.

Steroids everyday for the rest of my life is a hard pill to swallow. Forgive the pun. Lol

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In Memory: Liz Raftery, March 2012

1 Comment

We sadly learned that Liz died in March 2012 at the age of 45. She was an active member of the Cushing’s Help Message Boards.  She had a photo gallery there.

Liz wrote in her bio:

Hello, I’m from Hampton, just outside London. Same old story – at least 6 years of various illnesses, including four operations for various crap (kidney stones, gallbladder removal, and 2 cysts on my coccyx)

I then went from being very skinny (even after childbirth) to very fat in about a year (from 7.5 stones to 13 stones). You could roll me down our local hill! I wear maternity clothes as my tum is so disproportionate to my legs & arms (size 26 vs size 12!). My face, chest, neck and back look like someone’s put padding in, and my nice red glow brings all sort of compliments about how healthy i look, grr! I’ll post some photos later.

So far, a left adrenal tumor has turned up, but I have abnormally high ACTH (60) with a highish cortisol of about 600. This apparently implies a pituitary source – but the pituitary MRI was clear. I’m waiting on a second one with gadolinium this time, but here in London MRIs take AGES. The wait at our local hospital is currently 10 months.

In the meantime, I’m frustrated and feeling lousy and v tired. I have to work full time (luckily I’m an accountant, not something overly physical) as I’m a single mum to a lovely 8 year old girl who does not deserve all this. The guilt eats me up, but she is thankfully not the outward bound type!

Walking is a struggle as my legs seem to suddenly buckle on me, and sitting up without support at say the hairdressers or a restaurant is really difficult. So my (thinning) hair’s a mess and I don’t eat out much! I veer about – someone at work told my boss I couldn’t walk in a straight line! Highly amusing as I haven’t touched a drop in ages!

Other symptoms that have developed more recently include interimittently high blood sugar, intermittently high blood pressure, have to shave every day, horrid night and day sweats, red marks up my arms, but none on my body, intermittently rotten swollen ankles and feet, recurrently horrid kidney stones, and of course, an attractive buffalo hump (moo). And the final insult – can’t get into any of my shoes any more so shuffle about at work in my oversize carpet slippers. Very popular amongst my grey accountant colleagues.

As so many of the symptoms are intermittent, the endo says he is convinced it is cushing’s, but cylical, due to (again) interimittent high blood cortisol and ACTH, and non suppression on three low dose dex tests. Then the first 24 hr ufc came back normal which was very frustrating. I’m not particularly religious but i pray he won’t give up on me as it is a long journey compared to the diagnosis of other equally horrid diseases.

Feel quite isolated from my mates and lovely mum, although they are trying hard to be supportive – I’m surprised my mood swings haven’t frightened them all off lately. It’s so difficult to explain how rough it feels to take part in normal activities, especially when every symptom is something most people consider they have in everyday life to some degree. As well as the physical exhaustion/pain/weakness, my body image distresses me enormously. Recurrent kidney stones are pretty painful too (but not as bad as childbirth as a lot of men claim!).

Hope to be there soon. Great to read all your stories and know that so many of you know how it all feels – and have felt it for umpteen years too.

All the best.
Liz

Update April 21, 2005.

Following dex/CRH test, which even included a dexamethasone assay to make sure the levels were adequate (took forever to come back from the lab), my endo confirmed cushings. The bad news is I need the IPSS which will be in May. My ACTHs are between 80-100 so it is most likely a pituitary cause despite my adrenals showing a small adenoma – a red herring!

It’s a very odd feeling after waiting so long, knowing something was very wrong, but not knowing what, and thinking i would go on for ever in misery. So to all you guys out there feeling like this, and i know you’re out there(!), don’t give up!!

Wish me luck …

Posts in Liz’s memory:

Terry: Oh no, that is terribly sad.

Jenny: Oh no, what happened, did he say? 🙁

Beth: omg, I felt sick reading this. I knew of her, but never got to know her. I’m so sorry. 🙁

Regina: How tragic! :/

Liz: This is just so sad !! And yet he reaches out to us in his time of sadness, please forward to him my deepest sympathies

Nancy: Oh no!!” This makes my physically ill! I’m fighting tears.PLEASE get details so we can try to learn about what happened and prevent any other Cushie from loosing their life..  Hugs and prayers to Liz’s family!

MaryO: He didn’t say – I just responded to his email and we’ll see if he has any more to say.  I hate when Cushies die 🙁

Sandra: Omg liz was my friend! We used to chat on the phone when I was seriously ill too! Omg I cannot belkieve it! Mary cud u pm his email add pls xxx

Liz: Me too Mary me too, just brings everything to a scary place for all of us !!

Trisha: I am so sorry to hear this. I remember Liz from the boards.

Sandra: Have just spoken to ciara lizs daughter who said it was a massive heart attack in the end! Her funeral is on thursday! God bless u my friend xxxxx

Lisa: God bless her family..so sad 🙁

Kim: So sad

Jennyfer: Oh no no more cushies down please send my love

Judy: So sad. Does anyone know how old she was, I had never figured that out.

Mary: Oh no! I loved our Lizzy girl and have been thinking of her recently. I hadn’t heard from her in awhile. So very sad. Please pass along my deepest condolences.

Linda: No! Not Liz! No no no

MaryO: She was 45. On the C-H boards, her name was Lizr007

Shauna: News like this breaks my heart over and over again. Mary, please let him know that her Cushie family mourns her loss deeply.

Linda: Please do tell Liz’s brother how much she was loved. I can’t believe she is gone….

Judy: Thanks, Mary. I sometimes haven’t converted who they were on the boards to their real life name. I know who she was. That is so young.

Adrienne: so sorry, so sad!!!

Linda: Please let Liz’s brother know that I adored her. She was one of the first people I met on the Cushings boards many years ago, and she was one of my “rocks”. She was such a supportive, loving person with a great sense of humor. I am heartbroken that she is gone.

Stephanie: How tragic!! Thoughts and Prayers for her family and friends.

Lisa: Poor Liz. My heart breaks for her family. I remember her struggles Mary: You have my permission to send my condolences.

Grace: This is such sad news! Prayers and hugs for Liz’s family. How sad that we lose even one of us to the complications of this disease.

Sandra:  RIP liz u were such a wonderful person and a dear friend! I’m sure suziQ was waiting for u along with all our other cushies that have past over! God bless u huni I will miss u! Xx

Joanne: Im so sorry to hear another precious life taken by this illness, prayers for her and her family..

Anne : Oh not Liz!! She was an awesome person! She had such a great spirit. How horribly awful.

Janelle: So sad.. Please let us know what the complications were.. 🙁

Alicia: So sad. We are losing way too many people to this disease. Praying for her family.

Robin: Oh, this breaks my heart. Please tell Liz’s brother we will miss her terribly.

Heather: I’m so sorry. I loved Liz. Her spirit and sense of humor were amazing. I was actually thinking about her the other day as well. Please feel free to convey my condolences to her family.

Melissa: As soon as I saw her name — Liz Rafferty — I started to cry. Liz was part of our group there on the Cushing’s- Help message boards. She posted over 2000 times. When you posted her screen name, I could see her avatar in my mind. I am so sad to hear that she is not with us, her family or friends. I am so upset as I wonder why this has to happened to her, to us, to our community. Please send my condolences along to Liz’ brother, and make sure they know that she was caring and supportive of many as well as loved by many. I will miss her.

And Mary, please be sure to tell him she was part of our group, too. I bet he would want to make a donation to you and Cushing’s-Help if he knew how extensively she participated in our group.

Hugging all of you a little tighter today.

— Melissa, TX

Beth: Another person with my disease has passed. I didn’t know her personally, but the hurt is still there.. As is the fear. RIP Liz R.

Chanelle: Omg!! Ugh my head hurts :((

Sandra: Beth she was a dear friend and such a sweet sweet girl! Even at her worst she was cheerful and lovely ! She has left behind her daughter and her mum god bless em x

Christina: 🙁 so sad to hear this, RIP to her.

Mary: I loved Liz. She was so funny and upbeat and helpful. RIP old friend.

Linda: Rest in peace, Liz. You were very loved and and I’m thankful to have met you on my Cushings journey.

Susan: Thanks for posting this, MaryO. My sympathies to Liz’s family for their loss. As a member of this community, we will miss you.

missaf: My heart goes out to her family. I’m glad she started to feel better for a little while and got to smile more in life. Damn Cushing’s.

Sherry: Not another Cushie:( I am so sad to hear this news, Liz was well known on the boards and she will be greatly missed. I just hate this. My deepest sympathies go out to her family.

Elizabeth: Deepest sympathy & many prayers. This is so heartbreaking.

Dawn: I did not know her, but her passing has affected me. I am sorry that the world has lost her and I’m sad that it was a result of this horrible disease. It always hits close to the heart. My condolences to her family and friends.

Ami: I am completely heartbroken. She was a dear. Please include my condolences to her brother. I too would very much like to hear what the cause of death was.

Kristin: I’m so upset about this, all I can say is I’m sorry for her family. Leaving a 16 yo without her mommy is so terrible. Somehow the medical community needs to realize how many of our group are not making it needlessly… Prayers for her family. Very nice of her brother to let us know.

Melanie: OMG! I feel ill. I loved Liz dearly, she helped me keep my sanity when I first arrived on the biards and gave me such great support – we had some great laughs together and spoke on the phone for hours at a time. I cannot believe another one of us has gone. This damn disease is so bloody unfair.

Just read it was a heart attack (Thanks Sandra).  – heartbreaking.

Gumdrop: So sad to hear this. I pray her family is comforted.

Sandra: If I find any more info out I will post

Mary: She and I had SIADH in common and the continuing electrolyte issues afterwards, too. I think when I was hospitalized with it, she was the only other person on the boards who’d experienced it at that time.

Bernadette: I didn’t know her, but am so saddened by her much-too-early death. My thoughts and prayers are with her family, and with all the rest of you who knew her.

Ami: I know she and I exchanged posts on the boards. I wish I remembered more about her…

Shelley: I’m sorry to hear about her passing. She and her family and loved ones are in my thoughts and prayers.

Mary: oh no! devastating news. so sorry and saddened to hear. 🙁

Amy: I am so broken hearted. 🙁 Liz was one of the very first people to make friends with me on the cushings website. So sweet and funny, what a wonderful person she was. I have just cried and cried ever since learning of her passing. She really struggled to get her BLA for a long time. May God rest her soul. She truly was “one of a kind”

Dacia: Please send my love, my thoughts and prayers to all…

AuntSha: Condolences to her family…. My prayers and thoughts are with them. She certainly has been taken too young and much too soon :-(!!!

Diane: My beautiful, funny, smart dear friend Liz. You carried me through my journey and held my hand through some of the worst times I can remember. You were my rock, you were my shoulder. Words cannot express how I feel right now. I am heartbroken. I am so sad. The heavens are blessed with another beautiful soul. Love to you my dear friend xx

The last time we saw each other was when you had your adrenal operation. I was so thrilled to finally see you in the flesh after spending months posting to each other here and emailing and chatting on the phone. I met Liz at Cromwell Hospital in London where she was recovering from her adrenal operation. I bought her a massive bunch of stocks that filled her hospital room with a glorious heady scent and I bought along a few things to pamper her with. We spent the afternoon chatting non-stop and I remember giving her Mum a big hug. Those memories will stay with me and that is how I remember Liz. A happy smile and a big heart.

Rest in peace lovely lady….

Your Cushy friend, always,

Diane

x

Ellen: My deepest condolences to her family. This is such a stark reminder of how cruel this disease is.

Monica:  Oh Liz. I’ll miss her, she was such a good person and gave support to us all even while fighting her own battle.

Melly: So tragic! May God welcome Liz and bless her family with peace and strength during this horrible time. Such a reminder that each day I breathe is a gift.

love,

melly

3v3:  I am new here so I am not familiar with Liz, but I am so sorry to read this. Condolences to her friends and family. I was trying to find her bio info/old posts and it seemed like she was cured or at least recovering? 🙁

Judy:  Mine too. It’s just so sad. I pray for the family.

Beth: Such a tragic loss.. I wish her family and friends strength and peace. 🙁

Sandra: Have spoken to aLex woore who was also a cushie friend wiv liz and apparantly she had a bla smtime ago but they cudnt get her sodium n potassium levels right so whether that had anything to do with it I dnt knw but have left my no wiv ciara and her nan so if they call I will let u all knw! X

Karen: Please send my condolences also, such sad news . This disease is awful, we are losing so many amazing people to it. Many prayers,

Monica: Thinking of Liz tonight. I pray for comfort for her family, especially her 16 year old daughter. Far too many friends lost to this disease over the years.

Stanley : I’m sorry to hear that.

Melissa: This makes me cry all over again.

Mary, could you offer our services in helping to decipher what could have led to Liz’s death? For example, we could guide the family on getting copies of her hospital, doctor, surgical, and lab records.

Susan: I am just devastated by this news. Liz was so kind and caring. So tragic to lose someone so young.

Rissa: This is so sad. Praying for Liz and her family tonight.

Ikho: This news makes me so sad. My condolences to her family.

Lorrie: I am so sorry. My prayers go out to her family. 45 years old….such a young woman. God Bless them.

Amy: I’m still just in shock. Thinking back I can remember that sweet pic she had of her cat playing with something. I never could figure out what that cat was doing though. LOL This is just surreal to me . . . 🙁

Jenny: Please pass on my condolences, her family will be in my prayers. Just so unbelievably sad. :'(

Jo: cant believe it.  very sad, god bless our dear friend Liz.taken far too soon.

Jenny: The Cushings community has lost yet another dear member. Liz was only 45, please pray for her family and friends. 🙁

Lisa: One of our fellow “cushies” (Cushings patient) sadly passed away.  Liz was a wonderful 45 yr old mother of a 16 yr old and a friend to us that got so many through this. She was an inspiration and someone that kept her chin up and a smile on her face and ours on our message board. She will be missed.

Mary R:  We’ve lost another Cushing’s Warrior from complications of this rotten disease. Her name is Liz and leaves behind a 16 yr old daughter. This is the 3rd Cushie in 8 months!!! It doesn’t have to be this way! Just because it’s rare, doesn’t mean that the Dr.s should doubt us and our biochemical/imaging evidence. Please say a prayer for Liz’s daughter and family.

PLEASE promise me that if this disease takes me from my family at a young age, that you will bring Cushing’s awareness & education to others on my behalf.

Jen: I remember Liz well and I am so sorry to hear that she has passed. My condolences to her family.

Diane: It’s been a day since I found out and I am still numb with shock. There are moments in your life when things happen that change your whole outlook on things. Cushings was that something for me. However with all the difficulties of coping with such a terrible disease I managed to find many special friendships and was given support by such a special group of ladies that I will treasure in my heart forever. Liz was one of those special people. We had a giggle, we had a moan about the whole NHS process and testing, we shared some of our most painful moments going through this disease. I will miss you so much Liz. Shine a bright light in heaven lovely lady xxx Mary – you certainly have my permission xx Thank you for creating a place where I had an opportunity to meet someone like Liz xx

Amy: I was so very fond of Liz and my heart is still broken in two. 🙁

Diane:  I’ve just been reading some of Liz’s old posts on the site…more tears are flowing but with a big smile on my face. I forgot just how much of a laugh we had despite the fact we were going through hell…I particularly like the fact that alot of people didn’t understand Liz and my British sense of humour. It just reminded that some great bonds were forged during hours of such need and loneliness, stress and depression, and a fight to get heard and a struggle to get diagnosed.

Jo: do you remember when her endo put her in the priory, & she met Ronnie Wood ? Liz Thought she looked better than he did.I cant count how many times K didn’t get his dinner because we were too busy on the phone.Still cant believe it.

Sally: I am so sad to read this. Liz, myself and a few others had said we needed to get together in Bermuda (half way) when we were all finally healthy to celebrate our 40th birthdays. I don’t know if any of us managed to hit that milestone healthy, I know I didn’t and I know Liz didn’t. I’m heartbroken, it’s so very sad.

betseebee: Such devastating news! Liz’s bio was one of the first I read when I joined the boards. I also distinctly remember her kitty avatar and that I could relate to things in her bio, like being grateful that my daughter was also not an outward bound type, which made it a little easier to be at home so much. My most heartfelt condolences to her beautiful daughter, Ciara, as well as the rest of her family.

Liz, may you rest in peace, and dance among the angels.

Sherry: My deepest sympaties go out to her family. This disease is awful, Liz was a wonderful person, she and I joined around the same time, I am very sad to hear of this disease taking another precoius life. RIP Liz.

Diane:  That is so funny Jo, I did not know that. I think Liz would have had no problem looking better than Ronnie!! Have you seen his program on SkyArts right now?!! Sally – I am 40 in June and this has just brought home to me how precious life is and. Not sure I’ll get to Bermuda, maybe Bognor…!! xx

Sandra: Sally I remember that convo ! I was one of them then, and yes I made my 40 th prob the healthiest I’m ever going to b now despite battling fibro still! And diane I knw what u mean about the british sense of humour! So not only did we laugh about the joke we cracked up with the fall out of being misunderstood (in a goodway) of course! Lol …..I thought about her sooo much yesterday and poor ciara bless her! Just stil can’t beleve it x

Jean: Im soo sorry to hear abt this ;( Really shows how this disease is serious n deadly, if not treated properly or from complications from surgery…my condolences to her family n all who knew her.

Dave: Liz, we never got to share that coffee. You were so helpful to me in researching my various problems and I know that there are many many friends who don’t come here any more but we will all miss you. Sincere sympathies to all your loved ones.

Sheila: A tragic loss at such a young age. Sad to know that death happens with Cushing’s when we are in the year of 2012.  Hopefully more doctors will take an interest in this little known disease of Cushing’s Syndrome.

Tanya: 🙁 OMG rest in peace Liz. I’ve heard “I wish cancer would get cancer and die.” Well ‘I wish cushing’s would get cushing’s and die.’

Shandana, Adrenal Bio

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golden-oldie

 

I was diagnosed with Cushings syndrome in 2005, after displaying weird symptoms like a huge face-which I still have-hump on the neck, stretch marks, big tummy, weighing at 220lbs.

I most probably had my adrenal tumour (left gland)for the last 10 years; as I’ve been experiencing endocrine problems since then. It was a God send when my cousin, who’s an endo took me seriously and didn’t label me depressive.

My current problem? My tumour’s out, I’m on replacement therapy, but I’m not getting better?

Is there some sort of a clinic somewhere that can help me? Thanks.

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