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October 28, 2025

MaryO Adrenal, Cyclic, Ectopic, Familial Cushing's, Food-Dependent Cushing's, GIP-Dependent Cushing's, Pituitary, Pseudo-Cushing's, Recurrence, Success Stories, Undiagnosed 128 Comments

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Michelle (Michelle), Undiagnosed Bio

April 25, 2026

MaryO Cyclic, Familial Cushing's, Insulin Resistance, Male, Other Diagnosis, Undiagnosed , , , , , , , , , , , , , , , 6 Comments

Hi, I am a Mother of 3 boys, 20, 18 and 13.  My youngest has been steadily gaining weight, has a large round face with red cheecks and large torso.

I’ve been to 3 endocrinologists so far and have not been given a diagnosis of Cushing’s.  All of his cortisol levels were considered normal.  He also had an MRI of his pituitary and adrenals which were also negative.

The last endo diagnosed him with insulin resistance and he was put on Metformin. He has suffered from depression, anxiety, insomnia, nausea, buffalo hump, add gastrointestinal issues etc.  He has all of the symptoms except for the obvious stretch marks.

I believe he has cyclical cushing’s, which my sister found out she has after many years of testing.  A lot of the drs. I spoke to about this said they don’t believe in cyclical cushing’s.

It has been so difficult watching my son suffer and be ridiculed by other children. The doctors tell me to make him exercise and eat healthy (really? No kidding!)

Has anyone else had cushing’s WITHOUT the deep red stretch marks.  He does have stretch marks, but not the typical type you see in cushing’s.

Thanks so much

Michelle

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Kathy C, Pituitary Bio

April 25, 2026

MaryO Pituitary, Pituitary Surgery, radiation, Recurrence, Treatments , , , , , , , , , , , , , , , , , , Leave a comment

My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.

In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.

In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.

I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.

I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.

Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.

I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.

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Diana B (Diana Brown), Undiagnosed Bio

April 25, 2026

MaryO Adrenal, Hashimoto's, Other Diagnosis, Thyroid, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 4 Comments

Hi, My name is Diana. I have been sick for over two years now.

I have had kidney stones for the last 2 1/2 years, constantly passing them and have had three surgeries related to that.I still have seven stones left in both kidneys total. I didn’t feel well after the second surgery, and never recovered from the third which was last August. I have been to 3 urologists, thinking it was a urological problem. They all told me it was not connected to my stone problem.

I have been to two nephrologists and two endocrinologists and a cardiologist along with my Primary Care. The second nephrologist told me he knew what my problem was, Cushing’s Syndrome. That was when I went to my second endocrinologist because my own endo wasn’t on the same page, however she did no further testing and at first told me she thought I was borderline cushing’s followed by a phone call telling me she didn’t think I had it.

I have an adrenal adenoma in my left adrenal gland.I am going to see Dr. Theodore Friedman next month.

Here are my symptoms:

Easily out of breath (don’t know what you call the meter the doctors use to measure your oxygen but my oxygen is low on that meter)

Recently diagnosed with pre diabetes with random high glucose readings but did not test positive for Diabetes with a Glucose Tolerance Test

Tachycardia (never had this before getting ill) that wakes me up in the middle of the night, this started after my third surgery

Extreme fatigue/ as tired when I get up as when I go to bed.

Muscle weakness with any exertion, especially going up stairs and most days just walking across the room

Pallor

low grade fever on and off

blood pressure that fluctuates between 97/67 to 136/84 was always low and has increased frequently

Rising cholesterol over the last couple of years with no change in diet

Right flank pain

Low back pain

Burning pain in upper buttocks and upper back thighs

Stomach and groin pain

Extreme hip pain

Shaky and fine tremor in hands and sometimes my head also shakes

Mildly elevated cortisol (24hr urine cortisol test)

Have been diagnosed with osteopenia in the past

Hashimoto’s

I break out with clammy/flushing skin sometimes during the day but mostly at night.

Cannot tolerate carbohydrates (not for many years) /have many food intolerances

Easy bruising

So, that’s pretty much it. Thank you for letting me join!

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In Memory: Millie Niss ~ 1973-2009

April 24, 2026

MaryO H1N1, In Memory, Pituitary , , Leave a comment

Millie is the first Cushing’s patient that I know of to have died from complications from Swine Flu.  She was only 36 – how sad.

Millie Niss (1973-2009)

We were saddened this past week to learn of the passing of Millie Niss, the Buffalo-area-based poet, writer, digital artist and web-based installation designer, who died Nov. 29 of complications of Bechet’s Disease, which she had battled for nearly two decades, and the H1N1 virus, which she had contracted four weeks earlier.

She was just 36 years old.

There are only a few people one ever meets in life for whom the description “savant” might apply, but Millie was one of them. An award-winning, Columbia University-trained mathematician, she published papers and original proofs in professional journals while still an undergraduate, but saw her very promising academic career foreshortened by the early onset of a rare vascular autoimmune disorder — later diagnosed as Behcet’s Disease — that would eventually take her life.

With an indomitable intelligence and a fiercely competitive spirit, she approached her progressively worsening condition with courage, wit and a highly focused agenda of things she wanted to  accomplish.  Over the past decade and a half of her life, she turned to writing, digital art forms and a variety of web-based media forms to express the full gamut of ideas and emotions that still roiled inside her. Much of her work can be found at Sporkworld.org — the web site she created in 2000 — and her Sporkworld microblog — since 2002, a collaboration with her mother, the poet and author Martha Deed.

While her health prevented her from extensive travel, or even attending many events in the city in recent years, she remained a vital presence at many literary events in the Northtowns, including at the Screening Room in Amherst, Just Buffalo’s Literary Cafe at the Center for Inquiry, and Carnegie Art Center in North Tonawanda, where she lived.

Her last project and public event was at the University at Buffalo’s & Now Conference on Post-Modern literature and digital experimentation in mid-October, where she was among the writers and web artists chosen to present their new work at Hallwalls Cinema by a juried panel. Traveling with an oxygen tank and in a wheelchair, she was able to deliver her complete program, which was well-received by her peers.

Shortly after the conference, Millie developed a confirmed case of the H1N1 virus. She spent 29 days in the ICU of Millard Suburban Hospital before dying of complications of the flu, compounded by Behcet’s Disease and Cushings Disease.

Like many of the poets we’ve published in The Buffalo News with some regularity over the years, I knew Millie better from her work than from the handful of occasions we met at readings or other literary events over the years, but I can unequivocally say that her work had rhetorical propulsiveness: it was urgent, driven, sometimes whimsical, sometimes indignant, but it always seemed to jump up off the page at you.  Our conversations were always cordial, but I sensed that she wasn’t a woman who suffered fools gladly.

She bristled with the kind intellectual energy that you typically find in polymaths, and if that intelligence occasionally expressed itself with more than a hint of impatience, you got the sense that deep down she knew that her time to leave her mark on this world was limited. Her work was edgy, provocative, probing, ironical and never boring.

Some of her strongest work was too personal in tone for us to use in what is essentially the public literary space of a newspaper poetry forum, but I admired it nonetheless. We published at least four of Millie’s poems over the years on The Buffalo News Poetry Page, but much of her recent work was designed specifically for the web.

The fact that she achieved as much as she did during her brief lifetime lived under such difficult physical constraints is a testament to her boundless spirit, and a reason we can all celebrate her life.

–R.D. Pohl

From http://blogs.buffalonews.com/artsbeat/2009/12/millie-niss-19732009.html

Angelique L (Angelique), Undiagnosed Bio

April 24, 2026

MaryO Pituitary, Undiagnosed , , , , , , , , , , , Leave a comment

I am 54 year old woman with no kids. I had a hysterectomy at age 44 and went through the change. I was slightly overweight at the time and went on a healthy weight loss programme over 5 years and got down to my goal weight. Life looking good.


Fast forward to 2019 and I got a very painful and swollen pituitary gland infection on the right side of my face. Admitted to hospital and administered 60mg Prednisone intravenously. Then prednisone for 1 week tablet form after I left the hospital. No actual tapering off, just a prescription of 20mg daily.


This when the problems started, after 2 weeks my moon face appeared, bloated and fatigued I went to my GP. He said Cushings probably.


2 years later I am 60lbs heavier, distinct lump at the base of my neck, fat on my upper arms and between my thighs, belly, chronic fatigue. The weight is extremely stubborn. My sex life is dead, my relationships are foundering and my depression and anxiety is managed by seclusion and sleeping.


I am desperate to find a solution, but fearful my search will tell me I am damaged and have a short life expectancy.
So I came here perhaps to find support. Too many of the stories, sound just like me.


Take care all. Thanks for reading.
Angelique

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Kim M (MerryKim), Adrenal Bio

April 20, 2026

MaryO Adrenal, Adrenal Surgery, Treatments , , Leave a comment

Adrenal glands

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

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Tanya (Tanylou), Testing for Cushing’s

April 19, 2026

MaryO Hashimoto's, Other Diagnosis, Thyroid, Undiagnosed , , , , , , , , Leave a comment

Testing!

Hi I’m a 51yo mother of four kidults and 2 grandsons.

I havea few health issues including diverticular disease, hypothyroidism, hashimotos autoimmune thyroiditis (including multinodular gland), secondary hyperparathyroidism, non alcoholic fatty liver, high cholesterol, major depressive disorder and social anxiety and borderline diabetes.

I’m currently undergoing tests for cushings due to 2 recent elevated cortisol levels on a 4 point saliva test and morning cortisol blood tests. I have a hump, puffy face, signicant weight gain, ushing, excessive sweating, anxiety, skin issues (granuloma annulare, new stretch marks, rashes).

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Shea S (Shea), Undiagnosed Bio

April 4, 2026

MaryO Undiagnosed , , , , , , , 1 Comment

I am a 54-year-old woman who over the past two years has developed a buffalo hump and gained 60 pounds.

Initially, I had hair coming in heavily but now I seem to be losing it: my eyebrows, the hair on my forearms, facial hair and now the hair on my head. I hurt… A lot!

I have trouble sleeping, I am moody and I have no “absolute zero” interest in what was once a vibrant sex life. I’m confused and so done with doctors telling me I just need to lose weight.

My self-esteem has bottomed out at zero, going from my very active fitness oriented lifestyle to an often limping, painful, moon faced, overweight, buffalo humped middle-aged woman.

Aaaaaggghhhh!


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Sherry C, Pituitary Bio

March 31, 2026

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, 2026

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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