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JoAnn (Flojo3), Adrenal Bio

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After reading this website for awhile, with much interested and appreciation, I thought I should post my introduction even though I don’t have a confirmed diagnosis yet.

I am a 63 year old Canadian widow who recently retired – partly because I was finding work difficult, i.e. not as sharp mentally, fatigued, less motivated, sleepy in the afternoon, digestive problems and some days just not feeling well.

My symptoms started about 11 years ago. Acne/boils started developing on my face and I also noticed, after growing my hair longer, that it became curly after being straight all my life. About this time I also gained about 35 lbs. quickly. As I wanted to quit smoking I went on the Atkins Diet and walked at least an hour about 6 days a week. I did lose the 35 pounds in 5 months. However, when I did quit smoking some months later I gained 65 pounds in 6 months – more than I thought I deserved to gain (I am 5′ 2″). At first my doctor was not concerned as he said I had not ever been heavy and would start losing this weight. However, after three years or so he began to strongly encourage me to do so especially once I developed very high blood pressure and cholesterol. I was trying but with no success.

In addition, some of the symptoms I have been experiencing, some off and on, are: dry skin, skin tags, thinning hair on the top of my head, e, aches and pains (including repetitive strain injury), fatigue and anxious feelings. Last summer, for a short period of time, I had very dark pigmentation under my arms, under my breasts and on my forehead. I am on medication for high blood pressure, high cholesterol, thyroid and hiatus hernia.

Over the years I did mention some of these symptoms to my doctor and he said it was probably because of my overweight. I have been doing research on the computer for years and several years ago he readily agreed to send me for testing for PCOS although he didn’t feel that is what I had because I have 3 children.

Last year I had, I believe, two bladder infections and this year when I went for my annual check up on November 29th he found I had one again. (This is embarrassing!) I had no symptoms/pain though – maybe just frequent urination especially at night. As a result and because my mother had kidney cancer, he decided to send me for an ultra sound on my kidneys. My followup appointment was on December 22nd. He said my kidneys looked fine, however, there was an abnormality in my adrenal glands. I think he said they were swollen. He said they are not suspecting cancer and that is probably why I couldn’t lose weight, had high blood pressure, etc. He seemed pleased that finally there may be an explanation for my various symptoms. I must admit I did not tell him everything as I did not want to seem like a hypochondriac. My doctor ordered a CT Scan (appointment originally April 11th) and referred me to Urologist.

I had my appointment with him on January 14th and he rescheduled my CT Scan for January 28th. I recently completed lab work, i.e. 24-hour urine test, glucose, creatintine, uric acid, sodium, potassium, chloride, CBC (Hematology), urine test, serum Cortisol 8 a.m. test and a urine R4M (can’t read that writing too well). On February 15th I have a follow-up appointment with the Urologist. I have mixed feelings. In one way I am very happy at last that I am not “crazy” and something is wrong, however, I am frightened at what is ahead. Also, part of me wants to know everything and part of me wants to let things unfold a bit at a time. For the most part I do feel positive and feel that if it was cancer I would not have been having symptoms for at least 11 years. So I continue to read/research every night and have learned a lot from this board (have started to keep a journal) and am enjoying the humour as well. Sorry this is so long but it has been many years of various symptoms and frustrations. Thanks for reading my introduction and for sharing your knowledge and experiences.

JoAnn

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A New Newspaper Article on Jordy

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Today’s article: Father-of-two, 42, who was scared of heights now skydives from 17,000ft with NO FEAR after surgeons removed his ADRENELIN gland

Mr Cernik suffers from ultra-rare Cushing’s syndrome which causes high levels of the hormone Cortisol – a steroid that regulates the metabolism and immune system.

In just three years, former Territorial Army recruit Mr Cernik, who is 5ft 8in tall, ballooned from 11st 5lb to almost 17st.

To treat the condition, Mr Cernik underwent a series of brain operations and two procedures to remove his adrenal glands, which also produce adrenalin….

Read more: http://www.dailymail.co.uk/news/article-4418714/Father-two-42-no-fear-operation.html#ixzz4ebhHkMsI

Read more about Jordy.

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Meme’s Brother-in-Law, Steroid-Induced Bio

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golden-oldie

 

 

Help!! We get no answers but we have questions! My brother-in-law is 52 yrs old and has had a lifetime of prednisone use due to chronic asthma.

Last spring he got a cold that completely debilitated him to the point where the most he could do was take a shower and sleep. This went on for months. In and out of doctors’ offices looking for answers. Getting none. Lots and lots of tests.

Around September he started regaining some strength and was able to return to work part time.

By October, he had another cold and everything quickly went down hill. Severe fatigue, lightheadedness, muscle weakness etc. etc.

After seeing pulmonary specialists and every other doctor we could, thanks to our HMO, we were told steroid myopathy, Cushing’s Syndrome, cardiac myopathy and the obvious shut down of the adrenal glands due to this.

Now we see why there is no energy!! But what do we do? We live in the Midwest but would go anywhere for treatment or help.

The main question is how does a person get enough strength back to enjoy and have some quality of life?? At this point he is on a maintenance dose of 10mg of prednisone per day so he can live. Should an endocrinologist be checking him?? Any suggestions or comments are greatly appreciated!!! Thank you.

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Matthew C, Pituitary Bio

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pituitary-location
Hello,
I am retired from the United States Army and currently work as a dispatcher for the Blue Springs School District. A few years ago I started to have extreme anxiety. Of course, I went to a psychiatrist and was prescribed an anti-depressants. After a few months the anxiety would resolve. Unfortunately, over the years it would come and go and last for many months each time.

During the summer of 2015, the anxiety returned with a vengeance. I went to a new psychiatrist and was again prescribed an anti-depressant. However, this time it did not work. So, we went through a number of them without success. I researched to see what physical manifestation may be making me feel the gut wrenching anxiety and insomnia. I discovered the wonderful hormone called – YES YOU GUESSED IT – cortisol.

I then learned that cortisol came from the small, but powerful adrenal glands. That lead me to Cushing’s Syndrome/Disease. However, every site that I went to said that Cushing’s was very rear and effected women more than men. After, many more months of suffering and failing at the anti-depressant experiment, I went to my primary doctor and requested a blood test to determine my cortisol levels. The test indicated I did have high morning plasma cortisol.

My doctor referred me to an endocrinologist. I made a crucial mistake when I went to see him. He asked me my history and I told him about the severe anxiety. That planted a seed in his brain that I was just suffering from a psychiatric disorder. Nevertheless, he did order the test (Plasma cortisol, saliva cortisol and 24-hour urine free cortisol). All the test came back with higher than normal cortisol, but he kept saying that I was having “false positives.”

This went on for a number of months and then he basically fired me as a patient. So, I go back to my primary doctor and he refers me to my second endocrinologist. Guess what the story turned out to go the same way. I was fired again as a patient.

Before I go on let me add a little to the story: I do not have any of the physical signs of high cortisol. Basically, I suffer from anxiety, insomnia, brain fog, cognitive impairment and constipation. So, in their defense I don’t look the part of a person suffering from Cushing’s.

My next attempt was with the Veterans Administration. My endocrinologist there did the same test and was convinced something was wrong. She ordered a Inferior Petrosal Sinus Sampling. Finally, a test that did confirm that I had Cushing’s Disease.

The surgery to remove the tumor was accomplished on 9 August, 2016. However, the surgery failed. The worst part is that my current endocrinologist feels that my test results are “false positives.” I must say the entire process has been frustrating at best.

I do have a radical plan in place with a endocrinologist overseas who has agreed to do the surgery that will cure my Cushing’s Disease once and for all. I call this the final solution. Yes, this is extreme but my symptoms are getting worse and I don’t feel like playing the game anymore.

In addition, my symptoms are getting worse as my blood pressure is getting higher and higher.

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Erin T, Pituitary Bio

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pituitary-location

 

After six years of trying to get pregnant I finally decided to see an endocrinologist who suggested I might have a tumor on my adrenal glands and prescribed by bromocriptine to make it shrink. Two years later I was able to carry a pregnancy to term and delivered a healthy baby girl. After delivery I was never able to breast feed, kept gaining weight, had horrible stretch marks and odd bruising.

One year later I still had not had my period so I went to my OB-GYN. She shot me full of progesterone and estrogen, which did nothing so I went back to the endocrinologist. That day my BP was 173/121 and I weighed 180lbs (I’m 5’4″).

On first sight he diagnosed me with Cushing’s Syndrome and after a series of tests over many months it was confirmed.

On November 25, 2011 I had surgery to remove the macro adenoma that had completely consumed my pituitary gland. Ever since then my immune system has been weak and I’m tired all the time. Despite losing weight and exercising and eating right I just can’t seem to feel good.

I take .88 Levothyroxine, 2.5 prednisone, 2 doses of desmopressin and hormone replacement. Most days I wish I had never had the surgery. But, through it all I have done my best to live.

6 weeks after my surgery I went back to grad school and graduated on-time with honors, but since then I haven’t been able to keep a job outside of the home because I get sick if someone sneezes within 100 yards of me, and lets not even talk about the stomach bug.

I’ve been hospitalized twice and now carry injections of dexomethozine and anti-nausea meds with me everywhere I go. I’ve told my doctor about my fatigue and he refuses to prescribe Growth Hormone, but I’ve learned to suffer through it.

 

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Louise (Louise), Iatrogenic Cushing’s disease Bio

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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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Brain tumour survivor draws comfort | Toronto Star

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Erella Ganon has a brain tumour, and she wants everyone to know about it.

The 56-year-old woman has had brain surgery three times, had both of her adrenal glands removed and been through multiple bouts of radiation.

Ganon chronicles her health journey through a series of images in what she calls a “graphic autobiography.”

It’s a habit she got into as teenager. Every day she uses fountain pens to draw a picture of what she’s experiencing.

For the past decade those pictures have illustrated her battle with Cushing’s disease, a rare disorder that makes her pituitary gland release too much ATCH (adrenocorticotrophic hormone), stimulating the production of cortisol, a stress hormone, creating tumours.

Ganon shares her images on an online blog that in turn offers inspiration and comfort to others struggling with illness.

The hand-drawn pictures present an open and often humorous look at life with disease. The images are instantly relatable and depict everything from hair loss to hospital food.

“Everybody who’s touched by catastrophic disease… has a feeling of powerlessness, but the artwork and putting it out there is the opposite of that,” said Ganon.

via Brain tumour survivor draws comfort | Toronto Star.

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