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Stacy B, Pituitary/Adrenal Bio

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Hi my name is Stacy Boswell. I am 42 years old and from Indiana.

I have tumors on both adrenals and one on my pituitary. I have had 2 saliva highs and 4 dex tests where I did not suppress, with low to normal ACTH and high cortisol.

I am meeting with a 3rd endocrinologist in February due to my my last endo dismissed me stating I was a complicated case. She refused to do an IPSS stating that there isn’t enough clinical proof but offered to put me on a new trial drug in which I declined.

I am unable to work and trying to get long term disability through my job I did have prior to all of this. I also have hashimoto and had a total thyroidectomy this past July. I as well have had a complete hysterectomy back in 2002 due to pcos, endometriosis and cervical cancer cells. I have had genetic testing done for MENS 1 and AIP I am awaiting those results as well as waiting the results for Sjogren’s syndrome test. I as well just been recently diagnosed with occipital neuralgia.

All the specialists that I have seen all state these things would more than likely subside if the Cushings was treated. I feel at a loss and hopeless. Indiana is a dry state for cushings specialist and I do not have the means to travel so I’m just stuck.

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Melissa, Pituitary Bio

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golden-oldie

 

From August 12, 2007

I am 32 yrs old. I started having sxs after my 3rd daughter. I started to have face numbness and weight gain after my hysterectomy in 2004. I have had depression since the birth of my daughter in 2003. I had face swelling on and off.

I had started a diet (Chicken, fish, turkey burger, veggies and rice) February 2007. High in protein and low in sodium. I had gained about 30-40 pds since my daughter but then again it was 3rd child. I had lost 24 pds, but was not loosing in my face, upper body and still looked 4 months pregnant after loosing weight. Within weeks I had hypertension, hair all over my face, swelling redness of face, headaches, etc. Ended up in the ER still with no diagnosis and everything related to stress.

I work at a OB/GYN as a medical assistant so I knew something was wrong. One of the doctors I work with kept saying I had Cushing’s Disease but I kept putting her off. I had read about it in school but wasn’t hearing it. I finally did a 24hr urine and to my surprise it was over 1100.

My life had changed since I was dx with this. I did the 5 day suppression twice, (lab messed up the first one). Did 2 MRI’s.

Finally in July 2007 they finally found it!!! I had surgery done July 18th. Still currently on medical leave. Surgery went so well no bruising on my “moon face”. Levels did not drop as expected next morning but ok. 2 days postoperative they did drop in 1/2. Yah!! I’m cured. Have felt pretty good, just tired. Two weeks did 24hr urine, blood work cortisol, and ACTH. Still producing all three. Repeated 1 week later less dexamethasone even. Guess what still producing all 3 but now increasing.

Doctor’s suggest I go off of the steroids now (no point of being on them) and we are going to do more testing. Possible ectopic has been suggested. The surgeon does not want to do radiation or removal due to my age.

I am ready to get on with my life now, and I am confused. I would love to hear from someone with any advise or just to have someone talk to who is going through this.

 

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Joanne (Mojo1973), Steroid Induced Bio

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steroids

 

Hello Everyone,

I will try to keep my introduction short. I am a 43 year old wife, mother, and certified freak of nature. I was diagnosed with steroid induced Chushings in October of 2015.

Since I was a child I have had random medical issues but over the Over the last 20 years I have become a connoisseur of the medical arts. Funny because the I worked in the medical field for 15 out of the 20 years. I seem to collect diagnoses like a girl scout collects badges.

At 17 years old I collected my first big badge after months of being sick, Chronic EBV. In my 20’s I received the badges for Hashimoto’s Thyroidism, Fibromyalgia, and Adenomyosis.

As I moved into my thirty’s my badges were getting bigger and better; they included Sjogren’s syndrome, Raynaud phenomenon, Hemiplegic migraine, Meniere’s disease. It seemed every time I needed to go to the doctors they wanted to test me for something new. All I wanted was relief because my symptoms were getting more aggressive. They have caused me to several surgeries’ not limited to Hysterectomy (by 28years old), Splenectomy, Smart plugs in my lower eye lids, EGD’s and Colonoscopies.

My hemiplegic migraines have caused multiple visits to the ER and the hospital’s Neuro floor. With these Migraines I have TIA’s so I have trouble walking or talking for days after. As the years have gone by my illness has gotten worse and it all came to a head in June 11th 2015.

I felt awful and I had for several months. My new doctor was very confused because my blood work kept coming back normal for the most part, but I kept having random fevers (up to 105 degrees Fahrenheit) joint swelling and body aches/pains.

On June 11th my family couldn’t take it, they had watched me be in pain for too long, so they took me to the doctor in the morning. When the doctor saw my whole family there at my appointment in tears, he decided to do more blood work. After the appointment he sent me home and said I should hear from him in the next few days with the results. So, we left feeling defeated and like their would never be any help. About two hours after I got home the doctor called and said to get to the hospital that something was wrong but he was unsure what it was. My blood work showed my inflammation markers at 174 and my WBC 28,000. In addition to that my kidneys and liver were fighting to staying the game. This was the start of the current medication roller-coaster, and prednisone was the main med in this cart I’m riding in.

It took three months to get the inflammation and WBC down but I took 1 month at 80mg then 3 months of 60mg of steroids. My taper is going very slow and painful. I’m currently down to 4mg and it will take till October to ween all the way off. But because of the steroids I gained 70lbs in four months. This brought my 5 foot frame to 211lbs. I have all the best signs of Cushings and for the most part I’m dealing ok. Until I can’t bend over to put on my shoes or I have to use my vpap machine to breath at night.

I guess I should tell you what my current badges are narrowed down to. I have a rare auto immune auto inflammatory disease called Hypergammaglobulinemia with Familial Mediterranean fever. To have have name gives me a direction. I would rather I do this then one of my children. I just want the information for my family so they can have early diagnoses and live a long life without pain.

 

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Terri (Terri), Adrenal Bio

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adrenal-location

 

I started having issues in my 30’s. I noticed my skin getting splotchy and my periods became horribly painful and irregular. I had migraines and started gaining weight. I went to my doctor who said I was just getting older (again 30ish). The weight kept creeping on, the periods got worse. Again I asked my doctor , again it’s part of aging. This went on for years. I finally changed doctors and ended up with a hysterectomy, the doctor assured me this would fix things. It didn’t.

A year after the hysterectomy I get my first ambulance ride from my doctors office to the ER. They thought it was my appendix . The ER found nothing so they sent me home. I have sever nausea I , body shaking chills and sever side pains. They sent me to a gastroenterologist who ran tons of test and found nothing. BUT as they were reviewing my latest test results by phone the mentioned that my adrenal cyst hadn’t grown any. I said what adrenal cyst? They said throne that was in the ER report. This had never been disclosed to me. They referred me to a urologist? I skipped the urologist and looked for a endocrinologist. My symptoms had multiplied in this time. I now had a fuzzy face, fuzzy vision, more weight and stomach tenderness to the point it hurt to wear some clothes.

I saw my endocrinologist and he ran a ton of test and came back with Cushings. I just finished my second MRI, this time they are looking for a pituitary tumor. I am waiting for results to see if I have the pituitary issue as well as the adrenal gland cyst. Apparently my adrenal cyst was large enough to cause cancer concerns , but luckily doesn’t act like cancer. Happy that! I am now in my 40’s and it has taken eight years to get a diagnosis or someone to take me seriously! So don’t take NO for an answer!

 

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Teresa G (HB), Pituitary Bio

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pituitary-location

 

I am a 47 year old woman diagnosed with Cushings Disease June 2014. I have always been one of those girls who was curvy, but was a yo-yo in the weight department.

About 1o years ago I was diagnosed with PCOS. I had extra facial hair, extra weight, irregular periods, infertility problems. Boy did I feel good about knowing what was wrong with me!

Then a couple of years after that I had a stress fracture in my right foot. I seemed to take forever to heal, but finally did. I had several uneventful years. I did have pain in my pelvic area for quite sometime before deciding something had to be done. Four years ago, after visiting my gyno, it was decided that I should have a hysterectomy due to fibroids. That is when the fun really started for me.

I really didn’t noticed, but sometime after that my skin became really oily, I had acne (for the first time in my life), and the weight had come on. My hair became quite wavy. And the stress factures started.

First my left foot, the 2nd metatarsal, then the 3rd metatarsal. All in all I have had four different instances of stress fractures in my feet, and one on my ankle. What got everyone’s attention though, was when my hip broke.

I had been seeing a chiropractor for back problems I figured were due to wearing a boot for my fractures on and off for years. My back did not seem to be getting any better. As a matter of fact my hip area seemed to hurt worse. Then, early the morning of January 8, 2014, I was trying to make my way to the bathroom, when I heard this awful noise, felt an even worse pain and down I went. Later the doctors figured I had had a stress fracture that had started to heal in the femoral neck of my hip, but broke.

All of my doctors were scratching their heads. But that was about all. My PCP ran some blood and urine tests, but really did not find anything out. I FINALLY asked every one of my doctors, since they did not know what was wrong, where did they suggest I turn. Each one said and endocrinologist. Of course my next question was “What is an endocrinologist?”.

That was in February 2014. I was referred to Dr. Ferries, one of the few endos in Wyoming. It took a while to hear from her, but when I did, I was disappointed to hear that the soonest I could get in to see her was in June.

In the meantime, I had refractured my ankle. April 1, 2014 I had the ankle repaired. April 7, 2014 I passed my first kidney stone. I let Dr. Ferris know about it. Shortly after that my appointment got moved to May.

My appointment with Dr. Ferries last about 2 hours. After asking all the questions, listening to my story and an exam, she told us she thought it may be Cushings, but needed to do several tests. She let us know that it was something that would take some time.

I did the urine tests, the blood tests, and an MRI. My cortisol levels were way out of the norm. The MRI showed a 6mm microadenoma on my pituitary. I was ecstatic! After deciding to have my little friend removed in Denver, Co, Dr. Ferries sent my referral to Dr. Lillehei at University Colorado Hospital.

I took a few days, but they called to make an appointment. July 31, 2014 was my appointment with the brain surgeon. I was so happy to be on my way to feeling better! I had to tell my story again to Dr. Lillehei, the brain surgeon. He did not see the tumor, so he wanted me to see his endocrinologist. Then I had to tell my story yet again to Dr. Wierman. She told me she was not impressed by my previous tests and MRI. She would like me to do them all again. She told us they had their protocols, and when they did not follow them, they usually got bit. I was disappointed, but understood.

Those results of those tests were inconclusive. My cortisol was not nearly as high. So the next step was IPSS. The petrosal was scheduled for August 18, 2014. The results of the that test were quite definitive. There was an ACTH secreting tumor on the right side of my pituitary. Hooray!! My surgery was scheduled for September 5, 2014.

The surgery went off without a hitch. Colin, Dr. Lillehei’s PA, then informed me that the surgery was the easiest part. He said I would pretty much feel like sh@%. He was right. I am feeling better and better. My skin is not a grease pit any more. I am loosing weight. My appetite sucks and sweets make me even more nauseated. I can manage to make it to aquacise several times a week, though. I am looking forward to the days when I have energy!

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Sherry, Undiagnosed Bio

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A Golden Oldie

I am a Veteran who goes to the Veteran Clinic for my healthcare.  I have been going there for a little over a year.  I go to a womens clinic for both my primary care and gyn.

Backing up a bit…Since my youngest son who is turning 18 next month was about 3, I recall the onset of many of the symptoms of Cushing’s Disease.  However, I didn’t realize what was going on. I believe a lot of my symptoms started when I fell down backwards down a flight of stairs breaking my elbow and wrist.  I really haven’t been the same since. I have slowly put on 120 pounds over the years, all of it being in my mid-section.  I have suffered off and on migrane headaches. My arms and legs are thin as rails compaired to my mid body.  My skin has gotten transparent and dry.  I have the thick cushion of fat tissue between my shoulder blades.

Then in 2007 I had a severe hysterectomy due to massive bleeding/clotting and cysts.  I had serious complications which include blood clots in my legs and also a PE.  I have gone down hill from there.  My bones, muscles and joints ache so bad and can barely get up and down.  I can’t hardly stand more then a few minutes at a time. I have fluid retention so bad that my current doctor finally put me on lasix daily. Finally I suffer from depression and anxiety and I hate to go out in public because of my condition.  Though my husband gets frustrated with me he is still very protective of me and helps.

I have had so many doctors imply  that my problems are phycological or due to my obesity and I am simply tired of that.  I am on 17 medications now due to blood pressure, fluid retenstion, thyroid, diabetes, neuropathy, depression and anxiety, cholesterol and to insure against a heart attack.

I am 52 years old and I feel like my life is coming to an end.  I just recently was reassigned to another primary doctor as my old one left the clinic.  I didn’t like her at first, her personality was so different from my last doctor.  But Friday she did a completed physical and gyn exam.  She asked me if I had ever been diagnosed with Cushing’s Disease.  I had never heard of this disease.  She started pointing out all the classic signs. She decided she wanted me to have a blood test and was very determined I had it done.  I went home and researched it and indeed I have all but maybe one of the symptoms.

I am a little bit nervous about it and realize its a waiting game as far as tests and more test.  On the other hand I feel like I can finally put a name to what’s been going on and hopefully feel better.  I am glad I found this support group and would enjoy talking to others

UPDATE March 6, 2012: Also, additional systems include excessive hair growth on my face, foggy vision, inability to concentrate, red patchy marks on my arms and I have been told I am slightly bi-polar as well at suffering from anxiety and depression.

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Sharon, Undiagnosed Bio

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A Golden Oldie

Hello. My name is Sharon. Im 42 years old from Saskatchewan, Canada. I’ve been lurking on this site for about 3 weeks now, and finally decided to add my story. I appologize now if  I get carried away, but here goes.

As a youngster, I was always a healthy kid, seldom sick. Always active, very athletic. Sports were my life. But I did always have very heavy periods, and painful ones, right from day 1. Doctor said it was Mother Nature, and was told to live with it.

Got married, had 2 children. In between the 2, I had to have my gallbladder removed, unfortunatly it was an unsuccessful surjury. I still get attacks till this day. A hernia operation, 3 months later, a hysterectomy. (due to endemetriosis) a year later, the removal of one of my ovaries. I must admit I never felt right after the hysterectomy, but chalked it up to being in early menopause.

Then a year ago, my husband had to rush me to the ER. My heart was palpatating so fast I could feel it in my ears. A second visit to the ER for more of the same. The Doctor on that visit seemed annoyed, and said, get your thyroid checked. I thought, why not. I’d been suffering from freezing cold hands and feet anyways. Tests came back normal, and after a holter test, they told me my heart had an electrical problem. I was put on pills to regulate it.

At this time, the weight gain started to elevate. Being thin my whole life, I was startled by this. I’ve always eaten healthy. We are not an eat out type of family, I prefer to cook at home. But I decided to become more strict with what I ate. I always walked for excercise, now I added a half hour of core workouts and a half hour of abdominal workouts, 6 days a week. Plus my daughter, who was a health coach at Herbal Majic, put me on a plan.(minus the herbs, just the menu) Weight loss after 2 months was zero. She said, Mom, this plan works, why is it not working for you? Good question.

Im also into alternative methods to maintaining health as well. I purchased a chi machine and far infrared hothouse. While it has helped with my constipation issues and seems to have kept the gallbladder attacks away, it had done nothing to help aid in weight loss. (my friends and family however, have all lost weight in it)

Then more puzzling symptoms appeared. Always covered in bruises, major hair loss. Feeling very tired. And it showed in my face, because I have countless people who tell me I look tired. Yellow eyes from time to time. (could be from the gallbladder issues) This went on for a year . And in that year, I gained 25 lbs, 5 of that was literally overnight. .

Then 2 months ago, my heart medication stopped working. The palpitations are back, as well as a very low heart rate at times. And a shift from freezing cold hands and feet, to not being able to tolerate being hot. Noticed facial hair, my normally straight hair if full of waves and curls. Wake up drenched in sweat (chalked that up to menopause too) While I have maintained my weight at 142 lbs (115-120 lbs is my norm) my belly continues to grow. If it wasn’t for the hysterectomy, I’d swear I was 6 months pregnant. Then I developed a burning pain in my right shoulder. The pain is always there, makes it hard to use my arm at times. Some days its severe, at times during the day, the pain is tolerable. I thought maybe I dislocated something excercising. After a bath I decided to have a look in the mirror, and discovered a hump on my back I never knew I had. I think the hump and shoulder pain are related. I lay on a far infrared heating pad for the pain and it helps. Pain medication does nothing for it.

But not only is my belly growing larger, I noticed my face and neck growing larger as well. And my once smooth skin has turned rough, and red. Acne breakouts that leave scars and even a couple of skin tags on my face. This is all new to me. After careful examination of my neck, I realized I had a few lumps on the right side, and a fatty pad under my right collarbone. And when I press on that fatty pad, I feel the pain in my shoulder. Im exhausted most days now, from the pain, and not sleeping through the night for the past 2 months. I get up 2 to 3 times a night to pee. The other day I noticed that my pee had a really foul odor.(sorry for the TMI)  But it never burns.

Well, the final straw was a rash that appeared on my back. Even though I had a Doctors appointment in a week, I decided to go to the ER as the rash had me freaked out. I made the mistake of telling the nurse I thought I might have cushings. (had been reading the patient bios. It all seemed to add up) She smirked, and took me to another room. The Doctor came in and in a condecending tone, asked me,”what does google have to say about cushings” I should have told him that I leaned more from actual patients who had been diagnosed than I did from google. But we ran through my symptoms. He assured me he thought I didn’t have it. It was probably all menopause. He asked to see my drivers license and told me he thought I looked no different. I asked him if he could feel the lumps in my neck, he said no. (at this point I knew I was wasting my time)

He asked if I had used a heating pad, I lied and told him No.(Because he ticked me off) That may have been my saving grace. He called in another Doctor to have a look at this rash and neither one could figure it out, so he ordered alot of blood work. (odd though, i’d been using this same heating pad for years, and never developed a rash until now) They took blood sugar (a little high) urine, shoulder x ray. I was told to follow up with my Doctor. A week later my Doctor informs me that my blood sugar  in the ER that day was very high. And a large amount of sugar in my urine. He never said a word to me about my urine that day. She told me that one of the blood tests that came back showed abnormal for lupus.

Although she feels I am neither diabetic, or have lupus, it lets her know that there is something definatly not right. But the affirmation I got was from my Doctor who took one look at me and told me I did in fact look different. She could see the lumps without actually touching them. I guess Im not crazy after all.

She set me up with a specialist who told me flat out that he did not think I have cushings, because he sees the worst of the worst. I then showed him a picture of what I normally look like, and took a pause. Well, he’s looking into plenty of things, he has included cushings after all. And assured me if the tests come back normal, we will retest, and retest. Im also scheduled to have a thyoid ultasound in April. I feel like there is now hope that we might find an answer to all of this.

I went from being a shy person, to someone who is outspoken. I felt I needed to be, because I wasn’t being heard. Im angry at being dismissed over the years, and to the Doctor in the ER, i know i must have bruised his ego by telling him what I felt was wrong with me. Although I have alot of things wrong with me, there was nothing wrong with my hearing that day, when I over heard the Doctor and Nurse making fun of me.

I feel for each and everyone of you who’s stories I have read the past 3 weeks, who have had to endure way worse hardships than myself. I read how often you are mistreated by Doctors, and the horrible situations that you have gone through.

It breaks my heart. But each of those stories have given me the courage to fight for myself and for that, I can’t thank you enough, for being so open in sharing your lives with us.

God Bless You All!

Update May 18, 2012

Since my last post, there has been some developements, I’ve had a thyroid ultrasound and cat scan on my neck. They discovered 3 thyroid nodules the size of a pea. My Internist says that it does not explain my symptoms. An incidental finding was arthritis and disc degeneration in my neck. I am also newly diagnosed as active hypoglycemic.

Another 8 lb weight gain in 2 weeks. During those 2 weeks I lost my appetite and got the flu twice in 1 week. I barely ate enough to stay alive in those 2 weeks and still gained weight. My Internist told me he is at a loss. The swelling in my neck is now on my left side as well, and a chunk of thigh muscle in my left leg has all but disappeared. I ended up spending Mother’s Day in the ER. I woke up that morning with a burning pain in my chest and was so dizzy I couldn’t walk a straight line. Stayed dizzy for the next 5 hours. The heart checked out fine. The ER Doctor listened to my history and wished me luck, he had no idea either. I have had 3 Doctors tell me that if it is cushings, “do you know how hard that is to diagnose?” Meaning it’s to hard for them to figure it out, so they won’t bother. My Internist who tested me for cushings took a blood test, and told me that the 24 hour urine test, is old school. We don’t test for it that way anymore. Just a blood test. Of course mine came back normal. All my tests seem to be coming back normal, however I decided to document my findings as NO ONE believes me, except my Primary Doctor. But she knows nothing about cushings, she just sees the physical changes in me. I video taped the yellowing of my eyes, took pictures of my expanding belly, the hump on my back, the loss of muscle in my leg. And these strange muscle twitches that are happening throughout my body. The only thing my Doctor can do for me is to refer me to an Endo, which she is now doing.

My husband grows increasingly frustrated, and has told me that, you’ll be dead before they find out what’s wrong with you. I feel the same way. Knowing my Birth Mother died when she was 49 years old from a massive heart attack, but had the same physical symptoms as me, is scary. I am almost too tired to fight anymore but my Husband and kids keep me going. It’s been a battle, and I am far from winning yet. Will keep you posted.

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