Print this Page Cushing's Message Boards

Lisa D's Story

My name is Lisa Diaz, I am a 26 year old female from Australia who has been diagnosed with Cushing’s Disease. Here is my story…

I was diagnosed with Cushing’s Disease in 1999 at the age of 24. It first started off when I went to my family GP for a routine check-up. My GP took my blood pressure, which had a reading of 160/90. She (GP) wasn’t too concerned about it at this stage. But she did ask me to make an appointment in a week’s time just to check it again. That time came and it was still high. My blood pressure was monitored over a few months and it still remained high. Now my GP was getting concerned and referred me to a kidney specialist.

At my first appointment with the kidney specialist, he requested me to have an ultrasound of my kidneys. The results of the ultrasound came up positive. My kidneys were fine. At my second appointment he requested blood tests and wanted me to do a 24-hour urine test. Results showed that my cortisol level was high. This test was repeated. He suggested that I could have Cushing’s Disease. He did explain to me that further tests were required to confirm if I did have this disease. He later referred me to an endocrinologist.

My endocrinologist conducted the same tests as per the kidney specialist. Just incase there was an error in the results. Sure enough, the results showed high levels of cortisol. My endocrinologist explained briefly on Cushing’s. I mainly did my research on the disease via the Internet. This helped me to understand the disease more clearly. It’s not a disease that I wanted to have (not that I would want a disease at all). I didn’t actually think that I had Cushing’s because I hardly showed any of the symptoms, such as hump on the back, stretch marks, depression, etc. I didn’t really have the real obvious signs of Cushing’s. I did have a bit of facial hair and a bit of a weight problem, but I thought it was just me.

There was still one more test to do, this test would finally tell me if I had Cushing’s for sure. That test was the Suppression test. I was diagnosed with Cushing’s in 6/99. It took about 6-8 months from my first appointment with my GP to finally diagnose me with the disease.

Now that all the required tests have now been completed, I was now due for a MRI to find what was causing my body to produce too much cortisol. My endocrinologist booked me in to have a scan on my pituitary gland. I have never had a MRI before. It was a bit daunting. Two days before I was to get married my endocrinologist rang me on the mobile and told me that I had a 5mm tumor on the bean-sized gland. Boy, was I shocked. I was to get married that weekend and this wasn’t news that I wanted to hear.

The show must go on…I got married that weekend 9/99 and had an appointment with a neurosurgeon in a months time. The neurosurgeon explained what was involved in the procedure. I never had an operation before (I wouldn’t call removing four wisdom teeth an operation). Naturally I was scared, petrified to be honest. When he told me that he would be going through a nostril to reach the pituitary and wouldn’t need to shave my hair and cut my head open, I suppose I was pretty pleased with that.

On the 4th November 1999, I received a call from the Monash Medical Centre in Clayton to come in on that day before 4.00pm to have surgery the next day. I was on the waiting list for only four weeks before I got the call. I was at work at the time. I left work as soon as I could and went straight home to pack my bag and get to the hospital before 4.00pm. My husband of two months drove me there.

I was scheduled to have the surgery at 8.00am on the 5th November. On the day I was admitted, I was visited by a number of doctors. They came to advise me on what to expect with the surgery.

That night, I was unable to sleep. All different kinds of thoughts and scenarios were going through my mind. I was nervous and scared. I have never in my life slept one night in hospital and I wasn’t looking forward to the next 4-5 nights either.

After hours of tossing and turning I finally feel asleep to be woken up by a nurse at 6.00am. I had a shower and was prepared to be wheeled into the operating theatre at 8.00am. From about 8.00am to approx. 12.00pm that same day, was a complete blur. I vaguely remember waking up from the anesthetic and seeing my husband, parents and nurses around my bed telling me that everything went OK (was I glad to see everyone!). It didn’t really bother me that my nose was packed and taped and the nurses trying to put a catheter inside me. By the time dinner came around, I was able to think straight. My husband and parents stayed with me until visiting time ended. I had dinner and was able to speak a little as the oxygen tube that went down my throat was making me a bit uncomfortable.

I stayed in for another four nights and then was allowed to go home. During the time in hospital, I got the packing out of my nose after 2 days (ouch!) but still had the stents. My throat was healing up and I was able to talk clearly. My surgeon visited me to see how I was pulling up and say that he was able to remove the tumor. I had tests after tests. All tests came out positive. Cortisol level was down. I was prescribe Cortisone Acetate. After a few days from leaving hospital the skin on my nose started to peel. The endocrinologist from the hospital warned me that this might happen.

Two months after the operation, I had an appointment with my endocrinologist. At that appointment I was required to do a blood test and a 24-hour urine test. All tests came out good. I wasn’t taking the cortisol and the blood pressure tablets. At this time, I was given the all clear to start my family.

In May 2000, I discovered I was pregnant. I was ecstatic. The pregnancy went well. Only trouble was that my BP was borderline 140/90. My OB didn’t think it was a concern. This reading stayed with the entire pregnancy and me. My baby girl was born at 32 weeks and weighed 2020g. At this stage, we didn’t know my cortisol level was high or that the tumor that was removed 12 months earlier was growing back.

At my 6-week check up after the birth, I went to my GP who took the routine blood pressure reading. After over a month from the birth my blood pressure should have gone to normal, but it remained high. It felt like what happened just over a year ago was repeating on me again. My GP wanted me to go see my kidney specialist; from there I went back to my endocrinologist. I repeated all tests, had an MRI. Cortisol level was up and tumor had returned.

I couldn’t believe this was happening to me again. It had only been about fifteen months since my last surgery. I had my second operation on the 11th May 2001. I wasn’t as scared this time, as I have already been through the whole procedure before.

This second operation wasn’t as straight forward as the first. The night of the operation, I didn’t get much sleep at all. I had a strange desire to drink and I was urinating large amounts frequently. This was getting very frustrating for me; I didn’t know what was wrong.

The next day the surgeons whom operated on me came to check-up on me. The night nurses gave them a report of my condition throughout the night. Apparently the doctors weren’t too surprised. They explained to me that I had Diabetes Incipidis – this was the reason for the extreme thirst and passing fluid frequently. This is totally different from Diabetes mellitus. I was lacking in a antidiuretic hormone otherwise known as ADH. The surgeons thought that this might happen, according to them, they had taken out 40% of my pituitary gland. The part they took out actually controls this function of my body. I was given an injection of DDAVP (desmopression) to control the problem. This helped. After leaving the hospital, I was given DDAVP in the form of a nasal spray. I inhale one dose every night. I also left the hospital with thyroxine tablets (for thyroids), cortisone acetate and blood pressure tablets.

About two weeks after leaving the hospital, I went to see endocrinologist. He ordered me to have a series of blood test and a 24-hour urine test. More bad news was to follow. The tests showed that my cortisol levels had dropped but still above the normal range. What did this mean? It means that after two operations, I’m still not cleared of Cushing’s (will this disease ever go away?).

It has now been over two months after the operation. I am due to have stereotactic radiosurgery in August 2001. Doctors hope to destroy remaining tumor cells on the pituitary gland. This is my last hope, if this fails I would need to remove both adrenal glands, which has the possibility to give me more problems.

Stereotactic Radiation was performed on the 10 August 2001. It was a one-day event, which started at 7.00am until approximately 5.00pm.

I arrived at the Alfred Hospital in Melbourne at 7.00am. I was waiting for around 1 hour until I was attended to. The first thing that they did was place the “halo” on my head. Out of the whole day, this would have been the worst part. I had 6 injections of anesthesia in my head – four at the temples and two at the back. Once the anesthesia started to “kick in” the “halo” was placed on to my head being held up by straps. This was used to guide the pins into my head. Four pins (1” long) were inserted. Ouch! The pain was immense. My head felt as if brick walls were squeezing it.

I had the “halo” attached to my head from 8.00am till about 4.30pm. After attaching the “halo” I was to have a CT scan and then wait for a few hours while they set the computer up. I was in the sitting room with my husband for about 4 hours just watching TV (couldn’t even sleep, as the frame on my head was making it very uncomfortable). The actual procedure lasted only for 40 minutes. I was helped onto a table and the frame was attached the bed. My head was absolutely fixed to the bed. There was a machine that moves around your head. I was following this machine with my eyes. I couldn’t feel a thing. I was wondering to myself if it was actually doing anything. I hoped it was doing something and it was working. After the radiation, the frame was taken off and I went home with a very sore head.

It has now been almost 3mths since the radiation. And I can honestly say I can feel no improvement. I can really feel the symptoms of Cushing’s more than I have before – depression, aches and pains, facial hair getting worse, weight.

I ordered an earlier appointment (9/10/01) with my endocrinologist (my original date was 22/11/01). I told him all that I was feeling. He requested me to have some blood test and 24hr urine test. One week later I got the results back. As expected my cortisol level was high (540). After my second operation but before the radiation my cortisol level was 350 – 330 being the correct range. When will this end, I thought. I have lost all hope that I will be cured from this terrible, terrible disease.

In another 3 months (Jan 02) I need to have another lot of tests. These tests should hopefully show a decrease in cortisol level. If they don’t, something is wrong. I hope and pray that it will….

Keep you posted….

Lisa Diaz

HOME | Contents | Search | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Interactive | Bios | Add Your Bio | Pituitary | • Lisa D |