Home

Dennis O, Pituitary Bio

Leave a comment

pituitary-gland

 

In February 2013 I was diagnosed with Cushing’s disease.

Over the previous 6 years, I have suffered from a variety of problems including Deep Vein Thrombosis and a Pulmonary Embolism, compressed fracture of the spine, torn achilles (right leg), ruptured achilles (left leg), several ulcers in my left leg and one in my right, hypertension, high cholesterol and atrial fibrillation. Lesser injuries included a number of torn hamstrings and groins. Prior to that, I had no significant medical problems.

I also put on 14kg (30 pound) in weight. Up to 1997, I was a little overweight but very fit, taking part in distance running including a half marathon. My training routine lessened and I put on weight. The injuries I was having limited my ability to train.

My legs become very weak and have that ache that you get from working out – something which I have had to discontinue due to the weakness. Climbing stairs in particular was difficult. I have stenosis of the spine which causes sciatica which is very painful. I have lost strength in my arms as well as my legs.

When I was diagnosed with possible Cushings, I had never heard of the disease and of course got busy on the internet and read about the symptoms, causes and cures. I found myself hoping to have the disease which is bizarre given the seriousness of the condition and the havoc it causes on the body. The fact that it is not only curable but most of the problems are reversible offers me a quality of life that I thought I could never have again. (since then it has become apparent only some of the problems are likely to reverse)

I underwent testing to confirm I had Cushing’s syndrome and the particular form I had (turned out to be Cushing’s disease). I had extremely high levels of cortisol and a combination of the cortisol and dexamethasone used for testing sent me into a manic state. I had turns where I couldn’t speak. These lasted for about a minute and I had many of them.

I went by ambulance to hospital by ambulance and was admitted. I remained in hospital for 9 weeks, the first 5 of which I was in a manic state. I can’t remember much about that but from all reports I was a very difficult patient. The medical staff tried a variety of treatments until they finally found one which worked.

While was happening, I had several MRI scans on my pituitary gland which failed to find the tumour.

Since then I have had the MRI’s repeated on two occasional but to no avail. This is a common problem with the disease because the tumour is very small

My spell in hospital weakened me to the stage where I was in a wheelchair. I took on rehabilitation and am now walking unaided, albeit with a limp. The pace I can walk is slow but gradually improving. All in all my health has improved dramatically.’

My doctors have decided that they could not operate on me due to my poor health and the fact that they could not find the tumour. As a temporary measure I am taking ketoconozole to control my cortisol levels. That is working well and I am being to show signs that the symptoms of Cushing’s are reversing (loss of weight and, moon face going and strength returning).  However, my cortisol levels are at the high end of normal and this appears to be limiting the pace of my recovery.

Ketoconozole is not a drug which should be taken for long periods, and we are hoping that the tumour shows in future scans. An added complication is that the original manufacturer has ceased manufacture and I am reliant on a generic I am importing from India.

I have returned to playing golf generally twice a week. I have been attending a specialised gym which works on strengthening my back. The pain is becoming less frequent and less in intensity.

I do suffer from excessive swelling in my legs, particularly the left leg where I had the DVT. My vascular surgeon operated on this to improve blood flow. He believes that the current swelling is due to poor circulation and has prescribed full length stockings to be worn during waking hours. He also recommends a targeted exercise program to improve the blood flow in my leg.

I have recently started working with a physio and this seems to be helping.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Jenny (Jenny), Adrenal Bio

10 Comments

Hi I am a 34 year old female who has just been diagnosed with Cushing’s Syndrome.  I am married with two children ages 10 and 4.  My husband is an active duty Marine and I am a former Marine.

I’ve always been healthy up until now.  I had pretty much a yawn worthy medical history and I wish I still did.  I guess it started two years ago when I started having to use the bathroom frequently at night.  I did go to the doctor and they just told me to quit drinking before bedtime.  I chalked it up to having children and maybe just a weak bladder.  I wasn’t thinking rare disease.

Then I noticed that I started to gain weight and my close weren’t fitting right at all.  I chalked that up to sitting at my desk job all day and not getting enough exercise.  I did go to the doctor to have my thyroid tested and it came back normal.  So once again I am thinking it is me and I just need to exercise more.

My husband received orders to California and we moved here in July of 2012.  By this time my emotions are all over the place, my weight keeps creeping up but I think it is just stress.  Determined to get back in shape I start exercising everyday at 630 in the morning.  Normally I am not a morning person by any means but since we moved here I find it hard to sleep.  I worked out for three months following an exercise regiment but the weight stayed on.  My periods started to be further in between and would only last a couple of days, I went to the doctor for that as well.  I was told there is “irregular” periods and then there is “irregular” periods and mine were not that bad.  I had them test my thyroid again, it was normal.

Once again determined to beat the weight I started walking vigourously and watching my calorie intake.  I noticed that I would have tingling in my toes at times and that my calves seemed weak.  I thought I pulled a groin muscle but I didn’t let it slow me down I just kept going.  My face started to get rounder and puffier, my skin seemed so thin that I could see all of the vessels.  I knew something was wrong but I couldn’t put my finger on it.

I started to do my research on the internet and that is when I discovered Cushing’s.  But I thought it is so rare I can’t have this.  I started going to a Chiropractor for neck pain and when they took my blood pressure they were so alarmed they took it a couple of times to double check.

In March I went back to the doctor and told them to test my cortisol levels.  My husband was due to deploy in April so he planned a surprise vacation to Angel’s Camp in Northern California.  By this time I can hardly walk because of my pulled groin muscle, but I was determined to have fun with my family.

The second day we were on vacation I could hardly walk so I went to prompt care and had x-rays done.  The x-rays did not show anything so they sent me on my way with crutches.  By the 4th day of vacay I stayed in bed resting because I really couldn’t walk.  I got up to use the restroom and I had the crutches and fell backwards.  I ended up fracturing my hip.  I had surgery and told the doctors I was currently getting tested for Cushing’s and that my 24 hour urine test came back abnormal.

They had a really hard time keeping my blood pressure under control during my hospital stay.  While I was on vacation the endocrinologist office had called me to schedule an appointment but first I had to have another 24 hour urine test and dexamethasone test done before the appointment which was scheduled for April 23.  Well upon our arrival back home I was referred to Orthopedics because of my hip.

Ortho took x-rays and it was determined that after the surgery my hip was not aligned right and a second surgery ORIF was needed. It was conveniently scheduled for April 23 (the day I was supposed to see Endo).  I had my second hip surgery done and while I was in the hospital they were so concerned with my heart rate and blood pressure they did a CAT Scan for pulmonary embolism.

Well thankfully I did not have a PE but they did discover a nodule on my left adrenal gland.  I am having it removed on June 11th and from what I’ve read I am terrified of the aftermath.

Is there any good news out there?  I really hope so, I just want to be healthy and enjoy life again!

%d bloggers like this: