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Jody (jodiann), Adrenal Bio

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Originally posted January 6, 2008

My mother had Cushing’s Syndrome with pheochromocytomas and had a bilateral adrenalectomy in 1968, but developed pneumonia post surgery and died after 3 months in intensive care.

I have thought that I was starting to develop symptoms and was even see in her endo Dr. for years, but I was always told I was being paranoid. Then in the past ten years I have gotten diabetes, the buffalo hump, put on 100 pounds, sore joints, hypertension, low potassium, high cholesterol etc.

I finally got a CT scan due to shortness of breath, and asthma, and they found bilateral multinodular adrenal hyperplasia.

If it’s not Cushing’s Syndrome, then is there something else adrenal wise it could be? It sure seems like Cushing’s to me.

Update December 30, 2007

I was diagnosed with Cushing’s syndrome approx. 3 years ago, after gaining over 100#s, developing diabetes, high blood pressure, fatigue,muscle weakness, moon face,buffalo hump,many tests later,it was discovered that I had bliateral multinodular adrenal hyperplasia,and got the diagnoses finally,,,

my mom died from complications from a bilateral adrenalectomy in 1978,she had Cushing’s syndrome with pheochromocytomas,,so I watched her symptoms develope, and had felt sure that I was getting the same things, and finally it was confirmed,just a little difference in the diagnosis,,

however,I am having a terrible time getting any understandin, sympathy, or belief, from my oldest daughter and her husband. They believe,and tell me often, that all I need to do is diet,and exercise,and I would lose this weight,and look like I used to,,it is so depressing,frustrating,and hurtful,,,

the depression you get with the disease just adds to make me feel worse,,I’m taking an antodepressant, but they brought this up again at Christmas,due to me not wanting them to invite people that I hadn’t seen since before the big wt. gain,and appearance changes,,,I ended up crying most of the afternoon,,and it makes me feel like such a baby,,,,

I’m usually pretty good about not needing any body but myself for support,,but this just really has hurt me. I’m thinking of sending them pictures of patients with the disease that I’ve gotten on the internet,,although the son in law said he had done his own research and found that diet and exercise apparently was all that we needed to do,,,don’t know where he found that info from though,,,

Update January 6, 2008

CUSHING’S SYNDROME

I was finally diagnosed in approx. 2004,after I had developed diabetes,htn.,shortness of breath, IBS, high cholestero,major muscle aches,moon face, buffalo hump,and my hands and feet had actually gone up one ring,and shoe size and also had on-going depression, mood swings, anger issues,I could watch myself gain weight.

I joined curves,went every night after work, and still gained weight,,even after exercise for those three months I never did seem to regain any muscle strength or ability,,I still had trouble getting up from chairs,or walking any distance, unless I was pushing a grocery cart, or a stroller,,,I had trouble even carrying my groceries in from the car,i would be so out of breath,,I had to get a disabled parking sticker so I could get into work,,,as I was so out of breath if I parked in the lot across the street it would take me three stops for breath each day to make it in,,,and tired, I was so tired,,my favorite past time was sleeping,,I could sleep any time, and still be tired.

My mom had died from complications from a bilateral adrenalectomy due to Cushing’s Syndrome in 1978, and I had watched all of the changes she and her body had gone through,and felt sure that I had developed the same things, but I couldn’t get anyone to listen to me,,,until a unrelated chain of events lead to me getting a U/S of my chest, and a sugested follow up,which I got on a larger scale which showed something wrong with my adrenal glands, then an MRI of them revealed bilateral multinodular adrenal hyperplasia,,,and finally I got hooked up with a good endocrinologist,,am now getting better follow-up of my diabetes and am on ketaconazole to suppress the cortisol production,,which has helped somewhat,and is stopping the excess cortisol,and no more weight gain,,,but hasn’t gotten rid of any of the symptoms either.

There are a lot of times that I look in the mirror and wonder where I am, or where the real me went to,,I don’t look like the me that I used to be at all,I have gained over 100lbs.in the past 13 years,,,and the fight against the depression, the muscle aches and pain, and fatigue every day or so exhausting,,my Doctor doesn’t want me to get the adrenalectomy due to the loss of all steroids,and how difficult it is to regulate them after the surgery. He also told me that you lose you fight or flight response because you don’t have any natural adrenaline,so your reaction time is not very good,,,,,and I have three grandkids that I drive iwth and take places,and I am a nurse and have to be able to react fast,,,,I also feel that he doesn’t think that I am a good candidate for surgery.

So there it is,,and here am I,,,trying to deal with everyday life, and the lack of any understading or sympathy from some of my family,as they feel that I have gained this weight on my own, and if I just ” took better care of myself,and got some exercise” I would feel and look better,,,,,,,as if any one would do this to themselves,,,,,,:>( ,,,,,,,,,,oh well,you guys understand at least,,,,,,thanks for listening

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Lisa (Lisa), Undiagnosed Bio

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undiagnosed4

 

44 yo female
have been overweight for a while
always fatigue, muscle aches, pain/joint all I related to weight
only history is hypothyroid been on synthroid since 15ish
recently had UTI that was resistant to lots of abx then developed a bronchitis to pneumonia
then the UTI came back was on prednisone at start of pneumonia for 14 days then developed pain in left side and arm cardiac negative and high blood pressure out of blue
been worked up for carcinoid syndrome – neg
VMA and metanephrine – Neg
Lupus – neg
they have no idea why bp so high all of sudden i have palp with it
always notice muscle weakness I never have any strength
extremities tingle at times
but face has had horrible red butterfly redness dr doesn’t like
now wants me to be worked for cushing going to do 24 urine tomorrow
but i have had ct scans of abd and chest and one ct angio of chest showed a tiny tiny adenoma on left adrenal gland the radiologist said so small that they may not even comment on it
i do have the fat in neck/ shoulder/back
i just feel off not myself almost shaky inside i have no desire to do any activity although i know i need to

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In Memory of Malia Kenney ~ January 4, 2017

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in-memoryMalia died January 4, 2017 at the age of 40.

Her sister wrote on Facebook:

My beautiful sister Malia Kenney passed away this morning. She has been dealing with Cushings Disease for the past 18 yrs or so.

She has been in the hospital and physical rehab since November with 2 different types on Pneumonia’s. Her poor heart just couldn’t take it anymore.

She was such a beautiful person inside and out and I will miss her so much.

I LOVE YOU BIA
Malia has been a member of the Cushing’s Help boards since August 3, 2004.  Her profile is here:  Cushing’s Help boards
malia-kenney

Vicki (Pugmom), Steroid-Induced Cushing’s

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steroids

 

I am a recent transplant to San Diego and I am looking for a Cushings support group. I acquired adrenal insufficiency and Cushings about 3 years ago. I was given large amounts of steroids for numerous sinus infections, pneumonia, and bronchitis. I am 61.

I am trying to find an on-line or actual support group for Cushings folks or adrenal insufficiency. The last 3 years have been full of illness, numerous hospital stays, and a lonely road. I am tired of living alone with this health issue and would be happy to share my story with a group or others who have walked in similar shoes.

I take 25mg of hydrocortisone daily to maintain my current health status. I will check the message board for others like me and hopefully I can connect either in person or on-line with a group, I find that living with this health issue to be frustrating and at times depressing. I am trying to overcome being the disease rather than just a person who has Cushings. At times I just feel crummy for no other reason than my system is out of whack. I hope that I can find a group to be a part of and to hear their issues and offer any help I can from my experience. I am in the process of getting a medical team of doctors and see an endocrinologist in December.

This disease has had me on a roller coaster for 3 years. I don’t plan a lot of things ahead of the event since I never know how I will feel the next day. I am hoping there is someone else who has dealth with Cushings and what medications they are taking to make the disease manageable.
Thank you for reading this and offering any advice on locating a group with like health issues.

Vicki added a second version of her bio:

I have been living with adrenal insufficiency with a diagnosis of Cushing’s syndrome. I was diagnosed in 2012 and was told that I received this condition from having been given large amounts of prednisone for pneumonia, bronchitis, and sinus infections. I have no issues with my pituitary gland but I still demonstrate the same symptoms as someone with an official diagnosis of Cushing’s and live with taking steroids. I have the buffalo hump, the sweats, feel tired all the time, problems sleeping, moon face and weight gain as well as other symptoms. I have just moved to San Diego from Houston to be closer to our family. I am trying to find a group with the same type diagnosis or a group that I can be involved with to talk with. I realize that this condition is very rare and I am looking to be a part of a group where I can discuss the issues related with living with the diagnosis. I am very glad to have found this website where I am hopeful that there are others like me who also are looking for a group to discuss their issues.

It all started with a fainting episode in 2011. I broke my foot when I fell and saw a doctor the next day. I had been feeling so tired and sweating so much as well as having had the hump come up on my back a few years prior, which my doctor in Indiana didn’t think was anything but a dowager’s hump that could have been genetic.

I then became ill in 2012 with pneumonia and was hospitalized several times due to relapses of pneumonia and uti’s that put me in the hospital. I was having so much pneumonia and bronchitis on top of this other issues and was not getting any diagnosis other than adrenal insufficiency. in 2014 I had been hospitalized every month with one infection or another. My husband and I finally determined we were going to relocate to Houston, TX to see the doctors there. I was already on 40mg of hydrocortisone daily and still felt bad. I was almost gone on two different visits to the ER in Indiana and found myself on the floor unable to get up on one instance. I was on the floor unable to pull myself up for 7 hours in the dead of winter until my husband came home. I had renal failure and was not really expected to make it but I did. After a winter of these problems we decided that cutting off the hump on my back, as discussed by one doctor, was not the issue and we made plans to relocate to Houston in 2014.

I had a great team of doctors there and was diagnoised with Congestive Heart Failure, glaucoma, high blood pressure, high cholesterol, GERD, fibromyalgia, connective tissue disease, osteoparsis, adrenal insufficiency, and cushing’s syndrome.

I was in the hosptial with one infection or another for 1.5 years due to pneumonia that was caused by aspiration into my lungs. I had surgery, Heiller Myotomy in July 2015 and from that point the pneumonia has stopped. Thank God.

Since that time, we relocated to California to be nearer to our daughter and her husband and I have not had to deal with the pneumonia but till deal with the adrenal insufficiency and the Cushing’s syndrome.

Maybe someone has been though some of these same issues and would like to talk about what they are experiencing. I am willing to share my experiences also.

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Kelsey G (kelcann44), Undiagnosed Bio

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Hi there! I am a 24 year old female from New Zealand. I am curently awaiting my last test to prove 100% if I have cyclical cushing syndrome or not.

I went from crazy happy boucing sport ,dance and hunting crazy tom boy to at age 12 have 8months solid of tonsitis once i got them out i never recoverd propley and turns out i had galandular fever which effected me really badly they belive it is where my chronic fatuige comes from and other things.

From 2008 to may 2011 i was living your normal teenage dream making up for being so sick in highschool i could makeup for that and build some.special groups of friends amd plan partys and holidays….untill may 2011, I was standing behind the counter at work and there was a niggle at my side going down my legs and that soon turned into full blown cramping that had me colapse amd feeling like i was being kicked woth boots. They rushed me to hospital and with pain medication it became a very sharp.niggly pain and with pain came vommiting ( i am not also diagnosed woth cyclical vommoiting syndrome
After a week they xrayed my side and said i was very constipated but they tried and tried to clear it amd they couldmt…..this episode lasted 8 weeks and i tend to have them every 6months of so ranging from 8weeks to 16weeks eventually i have been picked up by an endicrine professor who has done some tests with abnormal results the last one being they 30day salivitoryswab test

I next have the urinary test but i canot have that untill im out of pain and having bowel motions ( this had been week 5) just wondering if anyone else has had bowel troubles with theirs. The endicrine man is shocked that i have been missed for soo long when i have 99% of side effects ( i mever knew i just thought i was gettimg fatter and my chubby cheeks had decided to fatten my whole face and my old size 16 pants and 16 top. Has now turned into 16pants and size 24 top!

I wish i had a answer because the life i am living is killing me i am a hollow shell of the person i was i have no life dreams or ambitions its one day at a time or getting sick again will ruin it (and i beyond love traveling ended up in ireland hospitala and laid up 2weeks bedrest for sinus infection and pnemona and a close to bursting drum…i camt plan holidays now as i cant save the money my bugets blow away when im out of work for 16weeks !

Luckily my mum.andndad are there for me but i see how me being so ill is breaking their hearts and puting them under so much stress along with my brothers.and my neices and nephews . My big boy 4 year old nephew breaks down everytime he sees me in hospital and the needles in the hand must.hurt me and that the hospitals turned aunty telsey into a quiet ghost who dosnt love me and play with me….smashes my heart into a million peices hearing that but it is true and when im good im.rediculous i party like a rockstar and bugger the health because im done with living the shadow ghost of.me!! 💖

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Lisa B (Lisa/FNP2B2017), Adrenal Bio

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adrenal_glands

 

Hello,

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

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

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

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

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

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

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

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

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

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

Lisa

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Sarah’s 14-year-old Son

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Fourteen-year-old son, who increasingly exhibits more and more signs of Cushings:

has had frequent illnesses: viruses, strep, pneumonia (two times) , & mono  x’s 6+ years

has had progressively worsening difficulty with learning “fuzzy thinking” and huge memory deficits x’s 4+ years

has had progressively worsening difficulty with emotional control x’s 4+ years

has had progressively increased fatigue  x’s 4+ years

has had progressively increasing central weight gain x’s 4 years

has had puffy eyes x’s 4 years

has had progressively slowed healing of insect bites and wounds on skin x’s 4+ years

has had easily bruised skin and acne x’s 4+ years

has had progressively worsening feelings of depression x’s 3+ years

has had progressively worsening feelings of anxiety with daily activities of life x’s 3+ years

has had stretch marks that faded from purple to flesh colored for 2+ years

has precocious puberty

has advanced bone age

has high testosterone levels

has been labeled as pre-diabetic

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