CSRF Members' Letters - Cyclic Cushing's

Cyclic Cushing's - Code 2093
During a diagnostic work up for Cushing's Disease, I was challenged, as are many others, in determining when to test for elevated cortisol levels. I used a spreadsheet to capture a variety of symptoms on a daily basis and to help identify patterns that represented a "high". I learned to track everything, and to test when I felt "different". Some of the things I tracked included headaches, heart symptoms, fatigue and energy levels, sleep disturbances, wooziness, blurred vision, face flushing, GERD symptoms, leg, feet and ankle swelling, increase in facial hair, irritability, achiness, and blood sugar levels. Even things as minor sounding as canker sores and other mouth sores, tiny tears in the skin of the top of my hands and fingers, cracks in the outside corners of my mouth, and very bloodshot/glassy eyes ended up being indicative of a high. I would typically experience a cluster of symptoms, although the combinations varied. Some of my symptoms during a high actually were also different than those that are frequently cited. For example, pain, achiness, and less appetite are often described as "low" symptoms, but they were "high" for me.

Based on my experiences and that of other Cushing's patients I've met, I believe there is a lot of variation in high symptoms. As a result, it is important to track symptoms every day, add new things to the symptoms list as they occur, test when feeling differently, and look for patterns that may emerge. Not everyone finds those patterns, but they can be there.

In my case, one of the most striking patterns was related to elevated blood sugar levels. I discovered this after checking my blood sugar level one day when feeling particularly ill, with symptoms reminiscent of a previous period of hypoglycemia. I found that my blood sugar was unusually low (59) mid-morning several hours after breakfast, and I rechecked it again at bedtime as I was feeling even worse. Surprisingly, my blood sugar was instead elevated at 165.

I began to check my blood sugar regularly - fasting levels in the morning, as well as before and 2 hours after meals. I periodically checked after breakfast and lunch, but most consistently checked after dinner.

Around that same time, I had noticed occasionally feeling unwell in the evening, with some nausea as well as sudden and extreme fatigue, but had not given it much thought. Once I started tracking my blood sugar, I came to recognize that these symptoms occurred about 1.5 to 2 hours after eating meals that were high in carbohydrates. It also most frequently happened in the evening. In those situations, my blood sugar spiked considerably - for example, it would be 90 before eating and rise to 198 two hours after eating.

During this time, I also did a number of late night serum cortisol blood draws. The very first time I tested serum cortisol on a night I had experienced high blood sugar, I was surprised when I got my lab results back and they showed that my cortisol level was also elevated! Over the next 6 weeks, I used blood sugar level as one of my indicators to determine if I should do cortisol testing, and discovered that high blood sugar almost always correlated to high serum cortisol.

It seemed that foods that were high in sugar (such as ice cream) did not have much of an impact on my blood sugar, however, those with refined flour would definitely result in elevated levels when my cortisol levels were high. On other nights the same meal would result in a normal blood sugar level.
Initially, I could tell by my physical symptoms (slight nausea, extreme and sudden fatigue) when my blood sugar had spiked, but would confirm it using the glucometer. However, over time, those physical symptoms diminished. I no longer felt so noticeably sick when my blood sugar climbed substantially, and I would be surprised to find a blood sugar level of over 200 when doing routine checking. As a result, it became even more important to use the glucometer regularly to test blood sugar rather than just rely on physical "cues".

I was never diagnosed as a diabetic, although a Glucose Tolerance Test performed during this time showed borderline impaired glucose tolerance.

General guidelines I developed for myself in determining if I should do a cortisol test included:

1. Any day that I experienced an increase of more than 40 points when comparing blood sugar levels before a meal to the level 2 hours afterwards (in most cases, my blood sugar actually spiked 80 - 130 points when comparing before/after meal levels)
2. Any day that my fasting blood sugar in the morning was 105 or higher
3. Any day that my blood sugar level exceeded 140 two hours after a meal (however, my most common elevated readings were 170 or higher)
4. I could not rely on blood sugar levels at 11pm as an indicator of whether I should test that night. Several times, I checked my blood sugar at the time of the late night blood draw, and found that it had dropped substantially by that point. The most critical and accurate times for me were the levels recorded within 1.5 to 2 hours after eating.

Once diagnosed, I had pituitary surgery in December 2005 where a lot of tumor was found in and around the gland. Pathology confirmed acth-secreting adenoma. Recovery from the minimally invasive endoscopic surgery was fairly easy, and I felt great for several months. Unfortunately, with a return of symptoms in March, I was pretty sure that I wasn't done with Cushing's yet. Having previously identified patterns of high symptoms, the necessary testing to confirm Cushing's was completed quickly. A decision was made to proceed with a second pituitary surgery, where a significant amount of tumor was again found in multiple locations. At this point, recent tests are pointing to continued Cushing's and I'm awaiting discussion and decisions about next steps.

I am hopeful that my experience will be of help to others. Please let me know if I can be of help!

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