Good Evening, My name is Stacy…I am 1 year Post-Op (2 Pituitary Surgeries in 3 days) and feel absolutely WONDERFUL!
After MUCH reflection I am thankful for what I have gone through. Although Cushing’s Disease is something I wouldn’t wish on any one; I must say I have been and am enriched day by day. Enriched with more knowledge and understanding and the ability to help others.
After 14 years of un-diagnosis FINALLY THERE WAS AN ANSWER. One, there was the Primary Care Physician who suggested it and there after this Board.
MaryO, without you I would probably be in my grave. Thank You for your dedication and sharing so much of your self with us! PS. Thank You for sending my Dear Friend Anne from Australia: she’s the BEST!
I was married 38 years when I became sick in 2011, but the family doctor and my husband wouldn’t believe me.They thought I was lazy, fat and crazy when they shipped me off to a mental ward in a hospital. I knew I was physically sick with Cushing’s Disease, but I couldn’t convince the psychiatrist. I left my husband, got a new doctor and was diagnosed with Cushing’s Disease in 2012. I had successful surgery in April 2013 to remove the pituitary tumor. I had Adrenal Insufficiency and was put on 5mg of prednisone as my body would not produce its own cortisol.
On Sept 27th/2016, I went into an Adrenal Crisis in an airport in Germany (I live in Canada) was hospitalized one day in intensive care, two days of regular care then I flew back to Canada and have been struggling ever since with Cushing’s symptoms. I was on two IV’s continuously in Germany for three days. I know one was prednisone and don’t know what the other was. But I do believe those doctors saved my life. However, all my Cushing’s symptoms returned and from October 2nd/2016 to December/2016, I gained 26 pounds while eating very little and should have lost weight.
I found an MD who also practices integrative and complementary medicine. He has a master’s in nutritional biochemistry. He had me do a Live Blood Cell test. My blood cells were all stuck together in a long chain and not free-floating like the way they should be. Based on this, the doctor said I had bad bacteria, fungus, and inflammation. He also said this is indicative of extreme fatigue. He said it was the starch in my body that created this problem. In April 2017, he put me on a low starch diet, and by July my adrenal awakened and was producing its own cortisol. I was no longer Adrenal Insufficient and taken off prednisone.
By Sept/2017 I was able to walk 13 km at the Toronto Zoo, could dance and golf. Most of my Cushing’s symptoms had disappeared. I got my life back.
I ate butternut squash for months, as it was on my list of approved foods, and became sick with Cushing’s symptoms again and got a burning in the vagina. I didn’t realize Butternut squash is starchy. My next blood work showed elevated White Blood Count, , Neutrophils, and Monocytes. All of them indicative of bad bacteria, fungus and inflammation. Click here for the bloodwork report.
There was no source found for the infection. I was put on Microbin and a second level of antibiotics which did nothing. Then, I was put on cipro flax which cleared up the infection. After six months, and strict adherence to my no starch diet, I started to recover from Cushing’s symptoms giving me a better quality of life. I also lost weight.
For three days in a row, I ate homemade tomato sauce. I got a burning in the vagina and my Cushing’s symptoms returned. ( Click here for the bloodwork report. ). Two internet sites said that tomato is non-starchy, but MedicalHealth.com says tomato is a starch. My friend, who is diabetic said if she is on a low-carb diet, she can’t eat tomatoes. My next bloodwork gave the same results as above. Over five months, while maintaining a no starch diet, my Cushing’s symptoms lessened giving me more energy and I lost weight.
After eating a handful of cashews for 4 days in a row I woke up with a burning in the vagina and my Cushing’s symptoms returned. This has now become my indication that I have eaten something starchy so I figure out what it was. I had bloodwork done the next day. This is the result. ( Click here for the bloodwork report. ). Cashews are starchy. Again the same elevated bloodwork results as above. Antibiotics cleared up the infection. After five or six months on a strict no starch diet, the Cushing’s symptoms lessened. My energy and strength returned and I lost weight.
Looking back at my old bloodwork from 2011 when I was in the psychiatric ward, it showed the same elevated results except that the WBC went up as high as 23 and the hospital mentioned that there was no source found for the infection. Another time, in 2011, I went to the ER, the records showed the same: elevated WBC with no source of infection.
To prevent this from happening again, I found a way to test for starch in foods using iodine. See how under DIET section.
Unfortunately, I had too much white wine, what can I say I’m only human and ate barbecue sauce on 5 May/2019.Here are my results. I am back to having Cushing’s symptoms. But after six months of being back on the no starch diet, I have recovered from the Cushing’s symptoms.
I ate corn-fed steak and got a burning in the vagina and became sick with Cushing’s symptoms again. Steak is a non-starchy food. But the cow ate corn, which is starchy, and I ate the cow so, I got sick again with Cushing’s symptoms. Unfortunately, I didn’t have the bloodwork done at that time to show white blood count numbers.
This cannot be a coincidence. There is a definite pattern that can’t be ignored. Each time I unwittingly ate starchy food, I would go to the doctor and ask for bloodwork to be done.
I had a cyst on my lower eyelashes surgically removed. This cyst formed because of repeated infections. The cream the surgeon gave me Tobradex has only 2 ingredients: Tobramycin and dexamethasone. I learned Dexamethasone reduces inflammation by stopping cells from releasing chemicals that normally help produce immune and allergic responses. The Dex stops the allergic reaction I’m having from the starch and by doing so lowers my cortisol. OMG! This is why when I stop eating starchy foods for six months, (because it takes that long for the starch to break down and get out of my system) I recreate what the Dex is doing and my Cushing’s symptoms lessen and my cortisol is lower. This is why my cortisol levels became normal seven months after eating the corn-fed beef because I didn’t have any further setbacks from eating starch. I was starting to recover. All my bloodwork confirms starchy foods create inflammation. My cortisol suppresses when given the Dex Suppression Test. For me, I was given one dex pill which did nothing and my cortisol did not suppress. Then the doctor gave me six dex pills and the cortisol did suppress. After this test, I had more energy and didn’t feel like my legs would collapse.
An interesting note is that some endos have Cushies taking ketoconazole, which is used to treat skin infections and is an antifungal, to help lessen the symptoms. But Cushies have found it works for only 2 years then becomes ineffective. So the connection here is that Cushies have infection and fungus, which my bloodwork corroborates. We can lessen our symptoms when we get rid of the source of the infection. Therefore, if I get rid of the starch in my body, will I get rid of my Cushing’s symptoms and the infection? This is the question I am hoping my fellow warrior Cushies will answer by trying my diet.
After six years of trying to get pregnant I finally decided to see an endocrinologist who suggested I might have a tumor on my adrenal glands and prescribed by bromocriptine to make it shrink. Two years later I was able to carry a pregnancy to term and delivered a healthy baby girl. After delivery I was never able to breast feed, kept gaining weight, had horrible stretch marks and odd bruising.
One year later I still had not had my period so I went to my OB-GYN. She shot me full of progesterone and estrogen, which did nothing so I went back to the endocrinologist. That day my BP was 173/121 and I weighed 180lbs (I’m 5’4″).
On first sight he diagnosed me with Cushing’s Syndrome and after a series of tests over many months it was confirmed.
On November 25, 2011 I had surgery to remove the macro adenoma that had completely consumed my pituitary gland. Ever since then my immune system has been weak and I’m tired all the time. Despite losing weight and exercising and eating right I just can’t seem to feel good.
I take .88 Levothyroxine, 2.5 prednisone, 2 doses of desmopressin and hormone replacement. Most days I wish I had never had the surgery. But, through it all I have done my best to live.
6 weeks after my surgery I went back to grad school and graduated on-time with honors, but since then I haven’t been able to keep a job outside of the home because I get sick if someone sneezes within 100 yards of me, and lets not even talk about the stomach bug.
I’ve been hospitalized twice and now carry injections of dexomethozine and anti-nausea meds with me everywhere I go. I’ve told my doctor about my fatigue and he refuses to prescribe Growth Hormone, but I’ve learned to suffer through it.
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 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
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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.
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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,
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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.
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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!
I had been sick for eight years before I finally got diagnosed with Cushings disease. My daughter went online and punched in hump on back and found out about Cushings disease. Then she went to sites like this one and found out what tests were necessary, which was very helpful, because not only did the endocrine doctor I saw think I didn’t have cushings disease, he also didn’t know what tests I needed. Thankfully he was on board with ordering the tests we asked him to order.
In 2008 I had pituitary surgery. I went on steroids afterwards for over a year. I lost all of the weight I had gained. My doctor told me I was cured. I kept telling him I was still exhausted and I was sick all of the time, but he wouldn’t listen and told me I was just depressed. Since then I have been to three other endocrine doctors. I have done a few 24hr. Urine collections and an 11 :00pm to 7am urine collection. I also did 3 saliva tests which were normal. The night time urine collection was on the “high side, but still within normal range “.
I had an MRI which didn’t show anything either. My doctor said he would do more 24 hrs urine collections in a couple of months. He said he would also do another MRI. I haven’t had any luck with the 24hr urine collections, so I am not expecting much. I had pretty much resigned myself to the fact that I will be fat and sick the rest of my life because I am so tired of doctors telling me they can’t find anything wrong with me.
I gained 60 lbs. In 6 months after my doctor told me I was cured. At the same time I started gaining the weight back, I started to get the same symptoms I had when I had Cushings disease. Since then my weight continued to climb until I started taking cortisol reducing supplements. Now I am still sick, but my weight has stayed the same. I have days where I am so sick I don’t want to get out of bed. Most of those days I have severe headaches and back aches. I get colds and flu a few times a month. People don’t think it’s the flu because I get it so often, but I have vomiting and body aches, just like I did when I had Cushings disease. I think I may have cyclical cushings because the tests aren’t showing anything. I am wondering if someone could recommend a test or tests that are good for cyclical cushings disease.
My official journey with Cushing’s started in May 2007 when I broke my hip by stumping my toe. Dr fixed me and sent me on my way.
About two weeks later I developed a PE and was in ICU for 5 days. It was there that the drs took note of my appearance (I looked very Cushinoid at this time) and that I had broke a hip the way I did. They sent me to their clinic and the dr there took about 10 minutes of looking at me and asking me questions and told me she thought I had Cushings – which I had never heard of.
So off for test I went and it was confirmed. At this point I had probably already had Cushings for 10 years but my past dr never once really heard my complaints and just told me I was fat and how easy it is to lose weight.
I had to wait till Feb of 2008 to have my first surgery since I was on blood thinner due to the PE. We all thought the surgery was a success but three years later back it came. So another surgery in Jan 2011. Then again three years go by and it’s back.
This time it was decided that surgery wasn’t an option so we went with Gamma Knife radiation. I am now in wait mod to see if it that worked and let me tell you it’s no fun. Not knowing and not going to know for sure for a year or two is really hard.
The meds I’m on (Korlym) really make me sick too. I’ve sometimes wished I had chosen to have my adrenals removed (which if this doesn’t work I will) and just be done with it all.
Some days are easier than others – some days I just want to say the heck with it all but I know that’s not an option. I will never be done with it, as none of us will.
I have great family (the best husband every!) and friends that are there for me but let’s be honest they don’t really know and can’t really understand what we are going thru or how we feel. I say I just want to be normal and me again but honestly I don’t even know what that is. So for me I enjoy the good days and deal with the rough / bad days knowing that God does have my back thru it all.
Hi, my name is Kathleen. I’m 24 years old and live in southern pa.
I had my two pituitary tumors removed 8/22/08 and I’m still not feeling any better really.
Over the last decade I have been diagnosed with cushings, Lyme, lupus, endometriosis, sinus
tachycardia, fibromyalgia, arthritis, asthma, the list seems to go on and on.
And I guess I had it in my head that once I had this surgery that I would magically get better and move on with my life – go to college, get an apartment, get my license, and hopefully lose all the weight so maybe one day I could be confident enough to start dating again.
Its been nearly 3 months and I seem to be losing hope. My neurosurgeon says that the pathology reports showed “essentially” nothing (still not sure what that means) and that he doesn’t need to see me again.
The ENT who did the surgery was wonderful but can’t really help with anything but making my
nose/sinuses/gums ok. 🙂 And endocrinologists – I have been seeing them for ten years, and never met one whom I liked or who was helpful. Right now I’m getting a full cardio workup to try to fix my weird rhythm.
All of this is being done at Georgetown in D.C, but I’ve been all over the east coast. I don’t know, I guess I hoped maybe you’d have some insight or hopefulness to latch on – cause I put all my eggs in this basket and I feel like I’m about to drop the basket.
I was diagnosed 2012 and had pituitary surgery done 2013. I am currently on medications.
I’m curious to talk with other Cushings patients. I don’t know anyone with the disease and have actually never even had a conversation with someone with cushings. It would be nice to relate with someone.
In 1976, I was (finally) diagnosed with Cushing’s disease and after the up the nose surgery, which was ineffective, I had bilateral adrenalectomy.
It all started in late 1974, when I started having lots of illnesses and was depressed. I was crying a lot and going back and forth to my doctor, who treated every illness and gave me anti-depressants.
Then the weight gain started, ( I was 185 at my highest, which was usually 115-120) actually I had been gaining weight, but by now it was rapid and uneven– only my trunk and face.
All through late ’74 and 1975, I was back and forth, even with a dx of pregnant, (which made evryone happy, as I was married Feb 1974. But the mental problems continued, I was under psychiatric care and had 2-3 in-patinet stays of about 2 weeks. Each time, after the observation and evaluation, I was discharged with no dx. I would also fall asleep at the strangest places and times, all very suddenly.
In March of of 1976, I had what was then called a “nervous breakdown,” so again I was hospitalized. THAT probably saved my life, as it was my psychiatrist who finally dx Cushing’s and decided on treatment. He later told me that I had him very confused, as each time he thought he had the DSM dx (he knew I was in the mh field), I would change and thus, he could not fit me in any DSM DX. Then, because of my appearence (moon face, foot-ball player shape, with skinny limbs, losing my hair and all the secondary dx (high blood pressure, insulin diabetes that could not be controlled– up, down, up down, losing hair, on my head but growing on my face and back), he said he remembered something from medical school.
He did a lot of research, ordered a lot of tests and VOILA– I had Cuhing’s disease. It was very rare and at that time, he said there were no more 300-400 (known) cases in medical history; also, I was the youngest dx at 26, because most cases were in those age at least 50.
I had the nose surgery, very new at the time, but it didn’t “work,” so I had to have my adrenal grand removed– they were 5x the normal size and producing 25x the normal amount of steroids. I had the surgery in Novemver 1976, which took from 7 am to 5 pm (I have the 2 long scars on my back). I did not know at the time that there was an 85% chance of surviving that surgery.
Post surgery, all but 3 of my fingernails fell off, my hair was in tight curls (previoulsy straight) and I had cystic acne on my face, neck and back. I started taking cortisone and florinef and was told I had to take it the rest of my like. I was under close dr care for about a year, and by April 1977, the weight was gone (I was back to 115) and all secondary symptoms were gone. I believe that the surgery was a real “cure” for my Cushing’s disease and after, it was/is maybe somewhat like diabetes, in that it is managed and controlled. There are some things that I have to watch carefully, like a comprommised immune system (increase the prednisone if infection seems likely) and some depression (never hospitalized again). I have had some adrenal crises, that landed me in the ER, maybe 5-6 over the years (how strange, no doctor ever told me or gave me a prescription for an injection for such occurences).
In 1990-1991, I had what ended up being appendicitis. After 4x in the ER, I vomited blood and collapsed. It turned out to be a (dead) grangrenous appendix, which should have been removed the first t ime. Supposedly, the prednisone that I take “masked” the symptoms and since my blood showed no infection, I was sent home from the ER each time. I spent 2 weeks in the hospital with 3 strong intravenous antibiotics to remove all the toxins in my body that almost killed me.
In 2000, I was dx with diabetes, which runs in my family, and at 64 years old, the problems I have now are severe allergies/sinus problems (no one believes that I am sick when this makes me sick) and I seem to always be hotter or much colder than anybody (which the doctor warned me about right after the major surgery).
Also, I started out with cortisone; in 1990, a new doctor in NYC gave me hydrocortisone and I gained 10-20 lbs. Another doctor quickly put me back on cortisone and said that the hydrocortisone was only for injections when I have adrenal crisis– it is quick actiing. The cortisone was 25 mg daily and around 1993-94, I started gaining weight. A new docotr in Chicago, switched it to prednisone 5mg., the equivalent of the 25 mg cortisone. He said the prednisone did not cause weight gain– he was right. I also take Florinef, now Fludrocortisone (the generic, Florinef is VERY expensive, as is the generic, but less). I started out with this at .1 mg once every other day and sometime in the 90s, the same dr who put me on prednisone, changed the Fl to one x daily.
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