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Angela's Story

Once upon a time...

...there was a newly married young woman who started to lose her slender figure.

Here is the story of my encounter with Cushing's Disease. Like most people, especially younger people, I never thought I would get some strange life-threatening disease, so as the symptoms began I either ignored them or thought it was something passing.

In 1997 I underwent a rather stressful move to Bogotá, Colombia. I worked at a school for missionaries’ children and there met the man soon to become my husband.

Soon after my marriage in 1998 I gained weight, mainly around my belly and breast area. Till that point in my life I had always been slender and not too concerned about fat! I blamed it on the pill. That first year of marriage was quite stressful... not just becoming accustomed to living with a man, but also the work and travel I was involved in. Two sisters also got married, so that meant two separate trips to the USA and as a teacher that had me working twice as hard with lesson plans and then catch up plans!

I remember in July of 1999 looking at a photo of myself and wondering at how round my face had become... so I determined to lose weight. I went on a diet and stopped taking the pill.

In November 1999 I went to my gynecologist for a regular checkup and while there mentioned to him that my periods had been irregular. He commented that I had more facial hair than before. I hadn't really noticed since I've always had a few stray black hairs in need of removal. He sent me to the lab. for blood work, testing all sorts of hormone levels. Most were within normal ranges except for DHEAS... it was off the charts. That caused him a bit of concern so he started me on the pill again with some other hormone drug (dostinex) to try to correct the problem. All my other female hormone tests including a sonogram of my ovaries and uterus were normal.

In February 2000 I showed the results of all my tests to another gynecologist in the USA to get a second opinion, she agreed with my doctor and I advised I stay on the pill for another three months. By this time my husband and I were ready to start trying to have kids, so in May 2000 I stopped taking the pill hoping I would ovulate and that my weight would go down. Despite dieting and eating way less than most people around me, I was only just able to maintain my 63 kilos (139lb) weight. I wasn't obviously overweight, but compared to my normal I knew something wasn't right.

I started experiencing various other symptoms throughout the year 2000, but didn’t start to connect them. I suffered major headaches... borderline migraines... that sent me to bed and also made my eyes hurt. Around October 2000 I noticed that my leg muscles hurt every time during and after I exercise. If I had been sitting or standing in the same position for a while my legs ached. I wondered "is this what it means to age?" I was only 28 years old. I kept trying to exercise, but the muscles kept on hurting. By the end of the year, I stopped taking my walks - it wasn't worth the pain.

By this time I realized there must be something wrong with my hormones... I had not had a period since I got off the pill in May... I wasn't able to lose weight... and I was practically growing a beard! So I made an appointment with my gynecologist... and the tests began!

When the blood test results came back, once again my DHEAS levels were way off, but most of the other hormones were still within normal ranges, some a little on the low or high side though. My doctor knew that something was wrong, but felt it was out of his area of expertise so he referred me to another gynecologist who specialized in endocrinology. He ordered anther sonogram.

Things had changed in my ovaries! The sonogram showed that I had PCOS (Polycystic ovarian syndrome.) Strange? Exactly one year earlier my ovaries had been completely normal, now they had cysts and I was not ovulating properly.

Doctor number two recognized that while I did have PCOS, its root cause was most likely some other hormonal problem... so he said I was out of his league and referred me to an endocrinologist.

I met with my new doctor in early December 2000, she asked me all sorts of lifestyle questions and about stress etc. She also ran a whole slew of tests and asked me to bring her some photos of myself from the past few years. By this time I had looked up my symptoms in medical books and had come across the disease called Cushing's Disease/Syndrome. I knew by the tests and questions she was asking that I could possibly have this nasty disease.

My before and after photos added to my cortisol levels confirmed her suspicions, I had Cushing's. One thing the doctors at my hospital here do is meet with each other every week to present cases for the other doctors to give their opinion on. She talked about my case with several of her colleagues and they concurred that she was on the right track. So, since Cushing’s is often caused by a tumor on the pituitary gland, I headed in for an MRI.

I waited for a few days after Christmas to do the MRI... then went back a few days later to pick up the results. My doctor was there at the time, so I snuck in a quick visit with her. The MRI had bad news... a 13mm tumor was found on my pituitary gland, they would have to operate. I remember thinking about how Job (in the Bible) reacted to all the bad things that started happening to him, yet he continued to humbly accept both the good and the bad that God allowed in his life. I didn’t like what was happening and wasn’t overly thankful, but realized God had a purpose and clung to the hope that it would be all right and for my best in the end.

Things moved fairly quickly after that... visit to the neurosurgeon... visit to the ENT surgeon... pre-op prep... my mother came to stay... more cortisol tests were done... Then the date was set for January 17, 2001. My endo. wanted me admitted on Jan 15 so that she could run several tests and get me rested before the surgery.

The actual surgery was not as bad as I initially thought it would be. It sounded very yukky and strange to think about having my nostril sliced and stretched so that the surgeon could make his way into the area behind my eyes and under my brain. It is a bit delicate, but I had confidence in the expertise of my doctors and of course trusted that God was ultimately in control of everything that was happening!

The surgery was a success! The surgeon was able to remove the entire tumor, but unfortunately in the process that meant most of my pituitary was also removed. He was able to leave a few damaged cells… it is my prayer they will one day work again.

As I was coming out of the anesthesia my heart didn't react too well and it started accelerating. That scared everyone a bit, so I was kept in intensive care for four nights. The hardest things to deal with after the surgery were the nose plugs. I felt no pain... and was given Tylenol for the occasional headache. The nose plugs made it difficult to breathe and therefore sleep was hard. I was very thirsty. Sucking ice, eating jello and ice cream helped. I could smell nothing; so all food tasted the same (especially hospital food.) Four days after the surgery the ENT doctor pulled out my nose plugs... that was the most uncomfortable feeling of all, not really painful, just strange... I wondered if he was pulling my brains out!! :) They let me out on day 5 of my hospital stay with instructions on how to deal with the diabetes insipidus (DI) I had acquired due to the surgery, as well as the usual instructions to not blow my nose, sleep with my head elevated and to take things quietly for several weeks.

Diabetes Insipidus is when the hypothalamus doesn't produce the hormone the kidneys need to properly process the fluids in the body. So it causes excessive urination and extreme thirst. Unfortunately we didn't realize that I didn't have an extreme case of DI and that I was very sensitive to the drug (DDAVP) they use to help control the liquid output of my body... so I ended up with water intoxication! Eight days after my surgery I was feeling nauseous, headachy and sick. My hands and legs started to go numb. I felt like I was distant from the world and from my own body. I was totally aware of everything, but felt like I was having delayed reaction with what I said and heard. My husband took me to the emergency room and within an hour they discovered that my sodium levels had gotten dangerously low. A little longer and I would have been comatose.

My thirst mechanism had been affected by the surgery, so I had kept drinking when my body didn't need the water. This made the sodium concentration in my body go way low. A bit scary. It took two days for me to feel normal and then another day for my Na levels to be within the normal ranges again. My doctor wanted to keep me under observation until we figured out how to deal with my electrolytes. The day before I was supposed to go home I reacted to the DDAVP and my sodium levels went too low again. That was very depressing. But, I eventually and finally got out of the hospital... by then I was calling it my prison... so uncomfortable and lonely and boring!

After coming home I only needed one more dose of the DDAVP and although I still had DI it was manageable as long as I limited how much I drank (2L max. per day). It took 3 full months to get back to normal in that area!

At the time of writing this it is 3 ½ months since my surgery. I am slowly reducing the prednisolone (form of cortisol) and that has withdrawal symptoms that make me feel extremely tired, nauseous and headachy. My moon face isn't quite as round anymore. I have now had two normal periods. I still have what they call truncal obesity. But I am down to 58 kilos. My muscles still hurt. I am tired most of the time. I still have facial hair...

This is a long process with many a lesson in patience as I learn to really trust God in the good and the bad times.

- Angela Loudon
May 1, 2001