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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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Kathleen (irishlass), Pituitary Bio

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golden-oldie

 

Originally from April 30, 2008

 

I am 65 yo, single, and live alone.

I have a pituitary adenoma. December 5, 2007 I had a pituitary resection, transphenoidal. The adenoma was approx 2.9 cm. A recent MRI revealed a good portion of the tumor remains.

I wear a medical alert bracelet for “Adrenal Insufficiency” and take 20 mg hydrocortizone daily, in divided doses.

The biggest problems I deal with is lack of energy, and inability to lose weight. I’m fifty pounds overweight. Has anyone ever been successful at losing weight?

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Elizabeth, Pituitary/Adrenal Bio

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golden-oldie

 

Originally posted September 24, 2008

Hi my name is Elizabeth (Liz or Lisa). I am a 32 year old who has possible cushings. In October of 2005 I was diagnosised with an adrenal tumor on my left adrenal gland. At the time I contacted my PCP to get a referral to an Endo doc. I was then seen by an endo doc who had ran some tests to meassure my cortisol levels which, of course, came back normal.

I then continued to gain more and more weight and was getting more and more stretch marks as well as facial hair. I have suffered from headaches for years and had begun to suffer from extreme fatigue and body/limb weakness.

This time last year my mom was reading a Weight Watchers magazine and read a story from a lady that had the same signs. She thought that she was gaining weight and getting stretch marks due to a pregnancy but had a hard time believing thats all it was. So this lady went to a specialist and they tested her for cushings and ended up finding out that’s what she had and of course the tumor. They performed the surgery to remove her gland and she immediately lost 20 lbs and felt so much better. So my mom and I began to research this disease online and discovered that this sounded exactly what I have and was going through.

I then took this information to my endo who began testing me more and more. We had finally found an elevated reading of cortisol from my urine in December 2007. He then send me for a MRI to rule out the pituitary tumor in January 2008. With surprise to everyone, I ended up having a pituitary tumor as well.

At this time, my doc decided to send me to the Mayo Clinic in Minnesota to see a Cushings specialist. With a lot of time and money, the doc at the Mayo advised that he was unable to diagnosis cushings based off of one elevated reading. None of the tests that were performed at the mayo clinic came back elevated. I then went home in tears and disappointment. I have been continuing to go through 24 hour urine testing and pretty much everything else and no luck but just 1 more elevated reading.

This has been one of the hardest things that I have ever gone through in my life. I used to weigh 125-135 lbs and had a beautiful body and such confidence in myself. Now, I am almost 100 lbs more and have a body that is a cross between a zebra and railroad tracks with facial hair like a man. My mental health has gone completely down the drain and I am on the verge of tears everyday all day long. My dating life has gone from having someone in my life for years to nothing due to my moods and self confidence. There are times that I feel like I am going to loose it. Like I just can’t take this any more. I try my very best to watch my diet and exercise and I still gain the weight.

My endo doc here at home just this week consulted with the doc at the mayo and they just can’t figure out why the readings aren’t coming back elevated. They definately say that my physical appearance is cushings. So we just continue to test and test until, hopefully, that day comes to end this horrible disease.

It has been so great to know that they are other people out there feeling and going through the same things as I am. It does help to know that I’m not the only one going crazy over this. With luck and prayers, hopefully the next time i am writing is to say that I have to go ahead for surgery. For everyone out there, try to keep positive thoughts!

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Jules, Pituitary Bio

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golden-oldie

 

Originally from September 25, 2008

My journey with Cushing’s started six years ago at the age of ten. It started when I developed a duodenal ulcer. It was unbearably painful (this is coming from someone with a very high pain tolerance) and I have extreme stomach problems for at least 4 years following. I went to a gastroenterologist and got it somewhat under control.

This went on until the age of almost 15 when I just couldn’t take it anymore. By this time I had struggled with a very mentally draining family issue that had occurred. I became very irritable and depressed and just assumed it was from this hard period of my life.

I was shocked one day to see purple stretch marks running down my abdomen. I had been rapidly gaining weight and associated them with that. Always being an average size girl this weight gain both freaked me out and made me even more depressed. I was very irritable and unhappy with myself. I don’t overeat and am pretty active being an equestrian rider and working out at least twice a week. It made no sense. I knew something was wrong but had no idea what. My face has always been round but lately it was larger and red.

I decided to go to a new gastro. and was suprised when he felt the base of my neck and told me my thyroid was very enlarged. He quickly referred me to an endocrinologist who diagnosed me with hypothyroidism. I though I’d finally found the answer and expected my new medication to solve my problems.

To my dismay the symptoms only got worse. I was also now noticing fatigue and weakness.I gained 25 pounds that year when I should have been losing it after starting the medication. I was starting to get thirsty and drink all the time. I urinated frequently and sometimes had leakage. My periods from day one were very intense and I had horrible PMS but now they were becoming very weird and I am starting to lose them. I have sweet cravings several times a day and if I miss a meal by an hour I get an intense headache sometimes accompanied be nausea. It is now difficult for me to concentrate on schoolwork and I am extremely fatigued. I can’t bend my joints for long before they tighten and ache. I can no longer bend over without having bad pains when I straighten up again. Some nights I have an awful time trying to sleep and I feel as if life is growing harder and harder by the day.

After dealing with this endocrinologist for a year and having him ignore my other symptoms by telling me that my thyroid levels were normal I couldn’t take it anymore. I knew I was very sick deep inside.

I scheduled an appointment with my now lifesaver. My first appointment with Dr.Borg was the best day of my life. He did a full body exam (which the other doctor hadn’t) and immediately told me that I looked like a person with Cushing’s disease. He was completely shocked when I told him that the other doctor hadn’t tested or looked at anything other than my thyroid.

Advice to anyone who might have this disease is to insist that your endocrinologist runs as many blood tests possible and make sure they do a physical exam. This is what I think “saved my life”. I was told by my new doctor that I would have developed type 1 diabetes within 3 years.

After the tests showed that my levels were way off I had an MRI which confirmed a tumor. I should now say that the best day of my life was when he told me that the MRI showed that I had a tumor and this was very fixable. I was so relieved. Now I am seeing a neurosurgeon and am awaiting news of when my surgery is. What I would like to say to anyone struggling with this disease is listen to yourself over anyone else. I had countless doctors tell me that I needed to eat less and work out more.

Deep down inside I knew there was a reason for my weight gain and for the hurt I lived with everyday. I knew that life was better than this. I pushed my parents to bring me to as many doctors as it took until we found the one who could find the culprit. You are the only one who knows how you are really feeling. I know it’s hard but hang in there and know that there is a light at the end of that dark tunnel.

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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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Angie T (Angie), Pituitary Bio

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I am a 44 years old. I started gaining a lot of weight in 2015 thought it was from taking insulin for my sugar.

I went to my Primary care doctor in August of 2016 and she took 1 look at me and told me that she was going to test me for Cushings . That was the 1st time a doctor had mentioned it to me. She sent me for the test and I tested positive. I was already seeing a Endo dr for my diabetes and she referred me to them for the Cushings. They started their series of test and told me in November that I did have Cushings.

They did a MRI with contrast and without and I have a Pit Tumor on my Left Gland that is 7mm by 8mm by 5mm. I am trying to find a surgeon in my insurance network so I can have my surgery. I have a lot of other health issues too.

I hope when I have my surgery that it takes care of some ot my other problems.

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Laura F, Undiagnosed Bio

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undiagnosed7

 

Hi. I am now 52 yrs old.

I’ve been gaining weight for about 3 1/2 yrs since having my thyroid removed due to a 25 yr old nodule that was calcified. My thyroid levels have always been good, before and after removal. There were A typical cells in the nodule, that’s why they advised removing the thyroid.

As I gain weight and have lumps of inflammation now over all of my body, all I have been told is to eat less and exercise more. Even though I have told my drs that I barely eat at all.

I have been through the cardiologist, rheumatologist, ent, gastroenterologist, pulmonologist, 2 gen practice drs and finally now an endocrinologist.

I still have the same symptoms; weight gain, headaches, abdominal distention, inflammation in ribs, feeling of breathlessness, buffalo hump, heart palpitations, acne, worsened vision, poor memory, insect bites take weeks to heal, teeth have moved leaving large gap, no armpit hair but facial hair instead, etc…

I have been waiting to see this endo for so long and she switches my levothyroxine (generic synthroid) to name brand synthroid plus gave me a paper to have many labs done. Day 4 of the synthroid, I woke up with hives. I took benadryl and it helped. Day 5 again hives but also feet swelled very bad. So I went back to the generic and those issues are gone.

Now i have to wait 2 months to have labs done and see endo again. I’m so upset and depressed. I feel like just doing the labs now and get a copy so that atleast I might have an answer. Waiting is frustrating. I keep telling these Dr’s that I’m not looking for something to be wrong with me, there is something wrong with me.

Whether it is adrenal/ pituitary or something else entirely, I don’t know. I feel like I am begging them to find out. All of my appointments with the specialists have been, come back in 2 months. WTH. This is very frustrating. I just want an answer. I will update if I ever get one. Best to all of you.

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