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Melissa, Pituitary Bio

June 22, 2019

MaryO Pituitary, Steroid-Induced , , , , , , , , , , , , , , , , 1 Comment

I was diagnosed with Cushing’s Syndrome about 4 yrs ago at 40 yrs old if my terrible memory serves me right.

I was told it was due to the steriods my Neurologist prescribed for Trigeminal Neuralgia and other severe facial pain. I was 110 lbs before the weight gain which ended up leaving me somewhere over 200lbs.

I had the moon face, buffalo hump, fluid retention, hair loss, blurry vision, thinning skin, confusion, anxiety, depression, terrible back pain, skin eruptions, hot flashes, and exhaustion etc. I struggled to stay awake and would fall asleep mid sentence.

The back and hip pain were so intense I couldn’t walk on my own so I had to use  a walker for over 2 yrs. Sometimes I still have to use it. I needed help getting to the bathroom. I was to weak to stand up in the shower. I was in bed 95% of the time. I was sick for a couple of years before my diagnosis.

Once PROPERLY diagnosed after many Drs made me feel as though this was all in my head. I was finally put on a long steroid taper, potassium and vitamin D. Fast forward 4 years after being told I had Cushing’s I am still debilitated by some of the syptoms.

Though I was told in the ER that my pituitary gland has started working again I am extremely weak and in pain. So much so I rarely get put of bed unless it’s for a Dr’s appointment. I have lost over 50 lbs but am left with purple stretch marks on my upper arms, breasts, stomach and hips. Also the skinny arms and legs with a fatty midsection. I am so frustrated with my body not allowing me to live a normal life.

Hopefully someone here can help me with some way to fight the fatigue, lethargy, libido and hot flashes that still remain.  I am taking  magnesium and vitamin D. and several other medications for a variety of symptoms but nothing in particular for the last symptoms I mentioned.  Is there anything one can do to have more energy? I become out of breath just walking across the room.
Many prayers and blessings to those suffering from Cushing’s.

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Natalie Stokes, Pituitary Bio

April 21, 2017

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

 

A SINGLE mother suffering from a debilitating rare disease effecting her whole body has been left “disgusted and appalled” after being judged ‘fit to work’.

Natalie Stokes, of Saint Agnes Close in Studley, suffers from Cushing’s disease, a condition where the body produces excess steroid hormones. She had her disability benefits withdrawn eight weeks ago.

Natalie had her allowance withdrawn after an assessment carried out by the Department for Work and Pensions (DWP) in January deemed her ‘compos mentis’ and fit to work – despite both her GP and consultant brain surgeon providing a sick note.

The 33-year-old was diagnosed with Cushing’s last year after countless trips over eight years to see her GP.

She started claiming employment and support allowance (ESA) last January.

She said her condition, which has deteriorated over the years, is “changeable” and suffers fatigue, nausea, insomnia, irritability, memory loss, poor concentration and as a result depression.

Physically, Natalie is tackling life-limiting side affects which include, extreme weight gain, excess hair growth, a rounded ‘moon face’ due to fat deposits, thin skin, boils and severe pains from movement and incontinence.

She said she was “disgusted and appalled” at her benefits being withdrawn.

“Yes I can raise my hand above my head but I am by no means ‘fit for work'”, she said.

In February, she was instructed to visit Redditch Job Centre for an interview but shortly into the meeting an assistant told her there was no point continuing it as Natalie was too unwell to work.

Following the meeting, on the advice of job centre staff Natalie reapplied for benefits with depression but recently received a letter turning her down.

Natalie, who has a five year old son named Charlie, is currently undergoing treatment and doctors believe she has developed a second pituitary gland tumour at the base of the brain after recently having one removed.

Her father Thomas, has Parkinson’s disease and dementia, and despite Natalie’s condition she tries to help mother, Cathie, care for her dad but admits the pair “help look after each other”.

Prior to her condition she worked all her life.

She said: “I was raised with good work ethics and from two weeks after leaving school held down a full time job and even attended evening college to train and become a counsellor.”

“I have ambition and can’t wait to be well enough to work but the fact is at the moment I am not capable.”

She is now considering talking her case to tribunal.

A Department for Work and Pensions (DWP) spokesman said: “The decision on whether someone is well enough to work is taken following a thorough independent assessment, including all available evidence provided from the claimant’s GP or medical specialist. Anyone who disagrees with the outcome of their assessment can appeal.”

From http://www.eveshamjournal.co.uk/news/regional/15232560.Single_mother_suffering_from_a_debilitating_rare_disease_judged__fit_to_work_/

 

Rebecca, Undiagnosed Bio

July 18, 2016

MaryO Golden Oldies, Hypothyroidism, Other Diagnosis, Undiagnosed , , , , , , , , , , , , 4 Comments

golden-oldie

 

Originally from Friday, October 3, 2008

I am 24 years old.

Last year my life changed. In less than 3 months I gained 39 kg or 85.8 pounds in less than 4 months. I am constantly tired no matter how much I sleep. I suffer on/off insomnia, my skin is fragile and thin, my hair on my head is falling out in droves and is not growing fast at all. I suffer severe migranes, have horrible stretch marks across my body, have lost my shape, have a swollen (moonface?) face, have extra hair growth on the body and I am bruising easily.

I have little concentration, am very irratible and have noticed personality changes. I get heatrashes in the middle of winter across my face, yet my hands will be frozen. My bones ache and I have lost so much muscle strength. I am so depressed, have a low libido, have no period and lately I am having problems with my eyes.

My normal doctor knows there is something wrong however none of the endo’s I have seen do anything. One told me it was all from depression. Another told me I stuff my face too much. This especially hurt as I was living on 2400 Kilojoules a day, barely surviving, exercising like crazy and still putting on a kilo a week.

My blood tests show my cortisol is high, my platlet level is getting higher and higher, I am constantly showing signs of infections/inflammation, I have hypothyroidism.

In Australia, the only way to diagnose cushings is with a 24hr urine test, yet mine was only “moderately” high. It is affecting everything in my life and I just want to know what it is. One of the hardest parts is the not knowing.

Everytime I eat, people stare and you can tell they think I’m gross. People make nasty comments about my weight and say I should exercise. I don’t do much anymore because I just can’t manage it, but even when I did, nothing positive would happen. Its affecting my friendships and relationships. I feel like such a winge, but I can’t help how hopeless it feels.

I am so grateful for this, for being able to vent with others that actually understand what its like.

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Heather P (Heather), Undiagnosed Bio

July 4, 2016

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

undiagnosed 5

 

This is about my husband…2010 diagnosed with rheumatoid arthritis (one day he was fine, the next day he was in agony type onset). Was placed on methotraxate, prednisone, humera, actemra, etc. for the next 4 or 5 years. None of the bilogics worked for more than a month. Pred and pain meds became a mainstay for about 5 years. I started to question the accuracy of the diagnosis and was patted on the head and basically told to forget it and go my merry way and accept it. We were always told the bloodwork “was fine. no issues with the exception that when Neal hurt, his inflammatory blood factors were low..which was odd but it is his body”. It was left at that. We basically gave up the Rheumatologist in 2015 as it was getting us nowhere and nothing was changing. Something was still wrong.

Late 2015, his weight gain went crazy. He developed moon face, the traditional hump on the back of his neck, huge adbdomen with tons of stretch marks everywhere, no energy, listlessness, severe pitted edema, paper thin skin, spots all over his legs, rash on his chest, pressure on his chest and lungs when laying down, sleeping all of the time (as in 2 seconds after he hit is recliner), sleeping solely in the recliner, lower extremety severe weakness, nausea, etc. This led to congestive heart failure in Jan 2016 due to the extreme fluid retention. Placed on lasix, indomethacin, blood pressure meds. Cleared by heart doc two weeks later to return to work.

Still no results…..still spiraling downhill. March 2016 Get steroid injection in the knees as he cannot walk due to the weakness, swelling and pain. Vision issues are now added to the list of continuing issues.

June 7, 2016. Go to another doctor out of state and get more bloodwork done as we cannot take it anymore. They take more blood. Doc does comment on his paper thin skin and mentions that is usually from steriod use. Neal passes out and has to be taken out of the office in a wheel chair as he cannot walk due to the extreme weakness and pain. Increase lasix to 2 a day and get prednisone.

I have finally had enough. I cannot stand seeing my once vibrant active husband just laying there…just existing….just barely…. I make a comprehensive list of all of his symptoms, make a graph of his blood work results from 2010 to present…what I found was astonishing…his results were NOT ok. I took him to the local doctor and pleaded and begged for him to figure out what is wrong with my husband. I initially go thte ole “I don’t want to step on anyone’s toes” etc. as we had just gone to the new rheum. doc a week ago. He ordered a new echocardiogram and it was clear. Added new drug. Neal had an allergic reaction and was put on high dose (50 mg daily) of prednisone combined with zantac and zyrtec for 3 days.

A week later, his bloodwork came back…gout, hypothyroid (based on symptoms), severe internal infection. Add more meds.

Go to eye doc and get the diagnosis of cateracts in both eyes. Doc felt it was due to prednisone due to the rapid onset. Surgery scheduled for next week.

In the meantime, Neal has gone even more downhill….now he feels like he periodically fractures a rib, a finger, etc. Even more stretch marks are present. He is listless and cannot function. He cannot walk. Add decreased urine output even on the lasix). He just lays there stuck in a shell. He has missed so much work in the past 2 weeks. He lives as one would in a nursing home…I take care of his daily needs. He cannot.

I go back to doing my research online. Cushings Syndrome pops up…OMG….Between all of the biologics, the up and down on the prednisone, zyrtec, steroid injections , etc. has sent him into the major downward spiral that he is experiencing…..Steroid induced Cushings along with hypothyroidism (might even be hashimoto’s..too soon to tell). We came to this conclusion at 2 am this morning. To further prove this, he took an additional 10 mg of prednisone immediately. I know…he refused to go to the er…he wanted to prove it one way or the other. (I did tell him that I was gonna invoke my medical poiwer of attorney and have him taken out by ambulance on tuesday if not sooner if this didn’t have some impact). Well…he can WALK this morning. He actually went to the bathroom to use the toilet….THAT is a huge deal to us. He is in pain but he can MOVE!!!! He went to work this afternoon as well. He has to have his cateract surgery so he can see to work (we will lose our home…company house…and everything else if this is not done asap). That is his priority. Once the surgery is done, we will be headed back to Nebraska to approach the doctor there about our findings relating to Cushings Syndrome.

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Susanna N (Susanna Nolt), Pituitary Bio

May 4, 2016

MaryO Other Diagnosis, PCOS, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , 1 Comment

pituitary-gland

 

Hello! I am a 30 year old single lady diagnosed with Cushing’s in summer of 2015.
I am a Natural Health Consultant and through the grace of God and lots of research, I basically diagnosed myself. My primary care was familiar with Cushing’s and when she saw all the Labs I had ordered on myself, she sent me for an MRI which showed a 6mm pituitary tumor.

I was so excited that at last a REASON for all my symptoms was found! But I had no idea at that point how long and hard the journey would be.

My Cushing’s was fast progressing and I gained 1 lb a week for the last 12 weeks prior to surgery. Plus, I had gained 20 lbs prior to that over the last 2-3 years. Not too mention all the other symptoms of Cushing’s: depression, PCOS, fatigue, weak muscles, thinning skin, hair loss, mental confusion, headaches, etc.

I was referred to Johns Hopkins Hospital in Baltimore MD and I met one of the best pituitary surgeons in the nation, namely, Dr. Gallia. He has a 90% success rate for Cushing’s to date.

After the surgery on Nov 13, 2015, I went thru all the normal cortisol withdrawal symptoms….shaking and twitching, incredible pain and weakness everywhere, headaches, depression and irritability, etc I spent 6 weeks at my parents home after the week I spent in the hospital for recovery from the acute phase.

After moving back to my house, I went back to work part-time the first week in January 2016. Now this May 2016 will be the 6 month mark, and I am discouraged at how bad I still feel most of the time….easily stressed and depressed, pain everywhere (esp spine, shoulders, and neck), forgetfulness, and lots of headaches.

I am still on 7.5-10mg of Prednisone every morning. I was on 15mg when I left the hospital, but every time I lower it, I have another crash. I tried the Hydrocortisone, but that wasn’t strong enough for me. My Dr said that my cortisol levels were unusually high prior to surgery, so my recovery may be longer than average til my adrenals start producing cortisol.

So I’m trying to be patient…The good news is that I’ve lost 13 lbs and 4″ around the waist, so I need to be grateful for that when I feel depressed. I am anxious to hear from others who are on the “Cushing’s Journey”. It seems that in some ways I am worse now than I was a few months ago. I have days when I just feel like crying and the pain is intense!

Do others have migraine headaches several times a week? Are your menstrual cycles crazy and debilitating? Hopefully we can learn from and encourage each other!!

God bless each of you!

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Neale O (NealeO), Pituitary Bio

January 22, 2016

MaryO Diabetes, Ketoconazole, Male, Other Diagnosis, Pituitary, Treatments , , , , , , , , , , , , , , , 2 Comments

pituitary-gland

 

I was diagnosed with Cushings Disease in September of 2015.

I used to be skinny. I was 160 lbs dripping wet. I had a thin face and exercised regularly. In fact, up until 2 years ago, I was doing CrossFit every morning at 5AM, and was pretty good at it!

I guess about 5-6 years ago, I started putting on weight. It started with what I thought was just a beer belly. I was dating a great girl and we went out a lot to eat and drink. I figured I was just getting fat and happy. Fast forward (got married to her) and we started to live our lives together. One day (2012) I was going in for a routine physical and was going over some things with my PCP. He suggested we do a finger prick to check my Glucose levels. The sample showed a 567. He was astonished, and immediately admitted me to the hospital. I ended up taking 5 IV bags as I was severely dehydrated. My PCP then schedule me in for the next day so that he could tell me I had Type 2 Diabetes (runs in family). They started me on drugs and insulin injections. So there I was, being treated for Diabetes (the Sugars as they call them) and High Blood Pressure (HBP).

This went on for a while and my wife and I decided to moved to Florida. In the mean time my undiagnosed Cushings was starting to rear it’s ugly head. Big belly, stretch marks, limb atrophy, fatigue, major depression, reduced libido, moon-pie face, thin skin and bruising easily. The depression caused a lot of issues with my marriage and we ended up getting a divorce. I moved back to Baltimore for support from my family.

I worked at my uncles shop for about a year, then was offered a new job with a great company and I jumped at the chance. By this time, the atrophy in my legs had started to really take effect. The job ended up being too physical for me and I had to resign after 1 one month.

I decided to see a new PCP as I was not happy with my previous one. Within the first 20 minutes of our initial consult, she recognized the Cushings symptoms and quickly referred me to the Endo Department (Dr. Taylor) at Mercy Medical. She had me do a bunch of blood work and urine tests. The cortisol numbers were off the charts.

She then referred me to Dr. Salvatori at John’s Hopkins Hospital (JHH). I was very lucky as she got me in there quickly. After speaking with him, he thought I had a Pituitary adenoma based on the crazy ACTH levels. We did and MRI, and an IPSS. The IPSS showed it was secreting from the right side mostly. The left had some high numbers, but nothing like the other side. In the MRI, they could not see the tumor.

Dr. Salvatori suggested on more thing before resorting to surgery. I am to have a “wet MRI” in January., 2016 This should give a much clearer scan. He also started me on Ketoconozale.

This is all happening very fast (diagnosed Sept 2015), and I am looking forward to the upcoming treatments.

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Rsh (Rsh), Undiagnosed Bio

August 1, 2015

MaryO Cyclic, Diabetes, Other Diagnosis, Undiagnosed , , , , , , Leave a comment

undiagnosed3

I am currently undergoing tests for cushing’s as I have all of the symptoms including 50 pound weight gain in 6 months, thin skin, buffalo hump, mid body weight gain, new diabetes and new high blood pressure, red spots on my face.

Some of the tests have come up high but some have come up normal so my endocrine doctor is thinking perhaps I have cyclical cushing’s. Becoming very frustrated as I continue to gain about 10 pounds a month ( have not changed my diet which is low carb).

I hope to have some answers soon, but the Dr wants me to wait another two months to test again.

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Jason, Adrenal Bio

July 24, 2015

MaryO Adrenal, Male , , , , , , , , , , , , 1 Comment

adrenal-medulla

 

Growing up, I was always quiet and withdrawn. I struggled in school with memory issues and was always embarrassed by my excessive sweating. I continued to have issues growing up and then something happened in 2001. I would have fits of rage, massive sweating, psychotic episodes, periods of major highs and periods of massive lows.

In 2003, a psychiatrist labeled me bipolar, schizoaffective, ADD, ADHD, and major drepressive. I took their cocktail of meds to only get worse. I would end up in a mental hospital (5 times).

In approx. 2005, I was done with them and I stopped everything and I just hid behind closed doors so to speak. Also in 2003, I just found records(2015) of bloodwork I had done in 2003 which showed high Hemoglobin and also high Hematocrit levels with high WBC count. Nothing was mentioned to me about this. I keep struggling to get answers.

In July of 2014, I started massive pains in my stomach with rectal bleeding and major flank pain. I went to the doctor and he ordered a CT of my abdomen. The CT showed bilateral Adrenal masses(left was 2.2cm and right was 3cm). He said these were “incidental Adenomas”. I am waiting two more weeks to have my low dose cortisol test performed. When I did the 24h urine to rule out pheochromocytoma , all was fine except plasma metanephrines which was slightly elevated and the doctor said there was a “near zero” chance of me having a Pheo.

I am still having these symptoms: weight gain (20Ibs. since 2014), “moon face starting (2015), thinning, fragile skin that bruises easily, slow healing of cuts, bites and infections, decreased libido, Fatigue, Muscle weakness, Depression, anxiety and irritability, Loss of emotional control, Cognitive difficulties and worsened high blood pressure and pulse.

I now have a new mass in my right armpit. An ultrasound was inconclusive.

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Louise (Louise), Iatrogenic Cushing’s disease Bio

July 13, 2015

MaryO Steroid-Induced, Update , , , , , , , , , , , 4 Comments

steroids

 

I am a 52 year old wife and mom of 4 who has had strange symptoms which will be a year this coming August.

My first symptom that I noticed as something strange was brusing beneath the skin on my left arm and then noticing that the skin easily tore. My doctor ran some bloodwork but still couldn’t figure anything out.

Later my best friend researched my symptoms and suggested I ask my doctor, which I did at my next appointment. Oddly at that next appointment the nurse checked my vitals and everything seemed ok. When the doctor came in I was leaning on my husband’s arm and my systolic # was 92.

From there he referred me to an endocrinologist. We discovered, after many blood test, that my issues were caused due to ACTH issue with my adrenal glands and that was caused due to taking varying amounts (usually 9 mg) of Entocort for around 12 years.

Now that I have been researching some of the symptoms I realize I have had them for at least a year. I have weaned down to 3 mg and want to get off of the Entocort but the doctor says that I will die if I just stop the medicine. I am due to have bloodwork July 13, 2015 and meet the doctor to discuss the results on July 23, 2015.

My FEET are killing me! I have felt SO alone and I am very thankful to find this support group….now I just need to learn how to use the message boards, so please pardon me if I flub.

Any help and advice is appreciated! Can this go away? I am PRAYING that it does!

Thank you in advance! Louise

~~~

update

Updated based on Louise’s comment.

My name is Louise. I am NOT a technogical person and cant seem to figure out how to get the most out of this forum, and I KNOW it is a good one. I desperately need contact with others who understand because they are going through this. Someone please tell me how? I just need some help. My bio says that I am “undiagnosed” but that is not longer true. The end of June I was officially diagnosed with “Iatrogenic Cushing’s disease”. I felt badly for 3 days, one of which was Father’s day and I was NOT going to the ER on that day. The second day I packed up a necessary bag, but still did not go to the ER. The third day I’d had all I could take and asked my husband to take me to the hospital. My stomach and my head hurt and had been hurting. The ER doc told me that my potassium and my sodium levels had bottomed out and that it could cause neurological damage and / or seizures. Scared me. I was admitted to the hospital for 4 days.

My Cushing’s was caused by long-term use of Entocort, or budesonide. No one could make sense of my “crazy bloodwork” because my cortisone level was “non descernable”, yet how was I alive? The second visit with my endocrinologist, just as she walked out the door, it hit me and I asked her if it could be the budesonide. She immediately recognized what was causing my Cushings. No one had picked up on the medicine because it was listed under the generic name and did not have a “cort” in the word of the generic. I have weaned completely off of the Entocort and it was not easy but I was determined. I have been on a maintenance dose of Cortisol beginning at 20 mg per day and I am not down to 15 a day. I want to go to a lower dose but need surgery on my thumb and so I know I will have to go back up to 50 mg for a while as I deal with the surgery. It will be the second surgery on my thumb, a surgery to correct the first surgery. Long story on the thumb, which I will skip….however, I originally messed up by thumb because I could not sleep. I asked my dr about Ambien and he said that would be good. I wanted to be sure it would not cause crazy behavior in any way, but once I took it, within 5 minutes (because I knew after taking the medicine I had to go immediately to bed within 10 minutes. I had a HORRIBLE fall and remember none of it. Once diagnosed with Cushings I realized that not sleeping, like for a day and a half being wide awake, was a result of Cushings.

My GI dr who prescribed the Entocort was kind and professional, truly caring but he didn’t ask me about ANY side effects, saying this drug was “the best” and that it really never had any side effects. I went in with skin on my arms so thin, brusied and bleeding, but he was only interested in the GI issues, even after I TOLD him I had Cushings. I finally had to tell him flat out that the Entocort he prescribed for me beginning 09/26/07 was what CAUSED my Cushings.

I ACHE, my lower back and feet, often my hands. It is hard to feel like an attractive woman when I am shaped like an apple with a moon-shaped face, but I decided I’ll just say heck with that…..there are other worse parts I am dealing with, yet, not being vain, that still matters to me self-esteem wise.

As I weaned from the Entocort my blood pressure went crazy up and down, but mainly high, which was some to begin with. Now it drops down and I feel like a wet rag. I am sleeping a LOT and when I get up during the night or in the morning I feel like I walk like Herman Munster. It is getting to me because it is hard to do things with my kids because I don’t have the energy or the ability to do things with them (the youngest 2 are 17 and 15 and they live at home. We also have a 22 year old and an almost 20 year old who are living on their own working, or on their own in college. I miss some things because I just “fall out, or hit falldown as I call it”. Maybe someone here can understand what I mean when I say I “hit falldown”. Others don’t understand. I have not told people in my community about my condition due to a former friend who is just plain nosey and called other friends to find out why I was in the hospital. I am not ashamed of the Cushing’s, but I don’t want to be gossip fodder either.

I did break down and asked my dr for a handicapped tag so that I don’t have to walk so far. I still have swelling in my legs, but hopefully that is better, but the pain is not. My balance is off and I have to steady myself when I stand up.

My cortizol levels have gone from “non descernable” to 2.4 to 4.3, so at least I am heading in the right direction. It is baby steps but I am thankful that it is going in the right direction, however slowly.

I would appreciate anyone getting in touch with me and have checked the “notify me of new comments via email box”. It is hard because people don’t understand and those I DO tell in confidence, I have a hard time describing it.

I don’t know that I used this forum correctly, but I am trying. Does anyone else have those “fall down” got to lie down NOW, moments where you lie down for hours? Somedays I feel like I get nothing done.

Thankful to have a place to voice my feelings. God bless each one of you. Louise.

 

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After gaining 120 pounds in 1 year, rare diagnosis saves man’s life

June 20, 2015

MaryO Male, News Items, Pituitary, Pituitary Surgery, Success Stories, Treatments , , , , , , , , , , , Leave a comment

Donelle Trotman was only in his 30s when his health suddenly took a strange and frightening turn.

He was rapidly gaining weight — more than 100 pounds in one year. His upper torso was getting bigger, but not his legs. And he felt overwhelmingly tired.

“My body just started changing,” the Staten Island, New York, native told TODAY as part of a three-day series, “Medical Mysteries,” looking at people who have recovered from rare diseases.

Donelle Trotman, right, reached 366 pounds at his heaviest.

It was especially puzzling because Trotman had never had weight issues before.

In school, Trotman was never a skinny kid, but he wasn’t overweight. He loved sports, playing both basketball and baseball.

So as he entered adulthood, he was active and in good shape. Then, three years ago, he suddenly began to gain weight.

“It was just specific places: My stomach, under my arms, my back of my neck, my face, the bottom of my back,” Trotman said. “My legs stayed the same for a long time.”

To lose the extra pounds, Trotman began running, working out and lifting weights. Nothing worked.

In the span of one year, Trotman gained more than 120 pounds, topping the scale at 366 pounds, twice the amount he weighed at 18.

“I doubled, like, I got a whole person on me,” he said.

There were other alarming changes. Trotman became so easily tired that he’d get out of breath just by chewing food. When he woke up seeing double three months ago, he knew it was time to go to the hospital.

Doctors ran a flurry of tests, but the results offered few clues, leaving everyone puzzled. Then one day, an intern noticed stretch marks all over Trotman’s body, a telltale sign that solved the mystery. Trotman had Cushing’s disease, a rare condition that affects fewer than 50,000 people in the U.S. every year.

Trotman’s weight gain was being caused by a tiny tumor at the base of his brain, prompting his body to produce too much of the hormone cortisol. He had some of the classic symptoms: major weight gain in his upper body, skin problems and acne, plus fatigue.

Dr. John Boockvar and Dr. Peter Costantino at New York’s Lenox Hill Hospital discovered Trotman had steroid levels ten times higher than normal.

“In Cushing’s disease, the pituitary gland has a small growth that releases a single hormone that causes the body to live with very high levels of steroids. The skin becomes very thin. You get increased acne. You can grow hair. You start sweating. You gain a lot of fat,” Boockvar said.

There was no time to lose: Untreated, Cushing’s is a fatal disease. Trotman was getting close to the point where doctors would not be able to reverse the changes, Costantino noted. He underwent surgery two weeks ago and had the growth successfully removed.

“The tumor was no bigger than the size of the tip of my pen,” Boockvar said. “And that something so small can cause a man to grow to 350 pounds and absolutely destroy his life is rather remarkable.”

These days, Trotman is feeling much better. His main focus now is to lose the weight he gained and regain an active lifestyle. He hopes to play basketball with his son soon.

“It’s wonderful. Every day it’s just like I feel a little stronger,” he said.

Doctors say Trotman will continue to lose weight and can shoot hoops with his son in about three months. There is an 8-10 percent chance the disease could come back, but Trotman said he knows what to look for now.

One of the reasons Trotman wanted to share his story is so others might recognize the symptoms of Cushing’s, although doctors stress it is a very rare illness.

via After gaining 120 pounds in 1 year, rare diagnosis saves man’s life – TODAY.com.

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