The first time I really started to think something was wrong was the summer of 1996. In 1994, at the age of 39, I took up bicycling as a serious fitness activity. By the end of 1995, 50-mile rides were almost routine for me. At 180 lbs, I was in the best shape of my life. My computer career had really taken off and I even joined the choir at my church. I had a great group of friends and we would frequently get together for barbecues, birthdays and pool parties and even go camping. And finally, I felt I had recovered from my divorce in 1993. I really loved how my new life was coming together and was looking forward to finding someone to share it with...
But as the months went on, it became increasingly difficult to ride the bike. Clearly, my energy was fading. By the spring of 1997, I was barely riding the bike. Since I was being treated for a low thyroid condition, I suspected that might be the issue. Sure enough, the lab tests indicated I needed to increase the dosage on my thyroid med! I also decided to see an allergist and get better treatment for my asthma and allergies. I was excited to think that maybe I had a handle on my health issues and that I could finally get back to riding the bike! I did start feeling better, but there was still something obviously wrong. The next round of lab tests indicated my thyroid levels were now too high! What?! So my doc then lowered my thyroid dosage. That cycle would repeat itself for the rest of 1997 and into the spring of 1998. Eventually, my endocrinologist gave up, saying she simply didn't know why we couldn't get my thyroid condition under control. By the summer of 1998, I was up to an all-time high of 267 lbs and still not getting better. I was no longer riding the bike and now it was becoming a struggle just to show up for work...
I had been suggesting to my primary physician that I thought I should be checked for sleep apnea and he finally agreed. In July, I had a sleep study done and bingo! I not only had sleep apnea, but a very serious case - averaging 52 events(stopping breathing) per hour during the study! No wonder I was exhausted! I was thrilled to get a diagnosis and looked forward to getting on the CPAP machine and getting back on the bike. I made marked improvement over the next few months and felt confident enough in January 1999 to sign up to do the Leukemia Society's 100-mile bike ride in Santa Fe, New Mexico in May. I had a rough time staying with the training, but managed to get my weight down from 267 lbs to 233 lbs. I had to dig awfully deep just to finish the ride - 106 miles - but when I crossed the finish line I felt a huge sense of victory... maybe I'd finally conquered illness and could now get back to just living life...
But my health took another dive late in the summer of 1999. The fatigue was worse than ever. When I saw a new endocrinologist he concluded that it was simply due to taking a generic thyroid medicine instead of the name brand. Apparently, the generics could fluctuate from one manufacturer to the next. Wow! That made perfect sense! No wonder I couldn't get my levels stabilized in 1997! So he started me on the name brand stuff - Synthroid - and I quickly started planning my next comeback...
I certainly felt better on Synthroid, but as I rolled into the Spring of 2000,I still wasn't back to my old self - not even close. No one seemed to have any ideas so I just tried to push through it. I did pretty well, enjoying a couple of camping trips and doing stuff with my brother Danny, who was living with me while he went to school. My weight was back up and of course my doctors kept insisting that I wasn't going to get my energy back as long as I was heavy. That sounded logical, but my instincts told me there was more to it than that...
In the fall of 2000, I noticed a lump on the left side of my neck. I thought nothing of it until it increased to about an inch in diameter. I had a biopsy done that was inconclusive, but my ENT doc said it had to come out. The surgery went well and the conclusion was that it was a benign tumor that she was sure was the cause of my fatigue. By the Spring of 2001, I was certainly feeling better so maybe that was it! Time to focus on getting the weight off and getting back on the bike! I did much better going forward, doing things like camping and even returning to my old hobby of flying radio-controlled sailplanes. But by the end of October, things started going south yet again...
By November, I was sicker than I had ever been. I had to go on short-term disability leave from work. Eventually, I was scared... it felt like I was dying... My primary doc insisted it was simply depression and insisted all I needed was to start taking an antidepressant. I had been suggesting for over a year that we check my pituitary gland but he refused, always reverting back to his depression assumption. But I found another doc who would check it and sure enough the tests confirmed what I suspected - complete pituitary failure! Finally, it was all starting to make sense! So I started on full hormone replacement and of course started getting excited about kicking off 2002 with my next comeback!
My excitement didn't last long... I kept waiting to get better but before long, I was back on disability. For all that Spring, I kept going back to work, then back on disability, trying to work, then back on disability. I gave it everything I had, but clearly wasn't able to do even the simple tasks in my computer job. I was finally let go in August. I spent the next couple of years trying to get answers but no one could explain why I was doing so poorly - when it was assumed that with full hormone replacement the pituitary issue wouldn't keep me from being able to function at an almost-normal level. By the summer of 2004, I had ballooned up to 330 lbs and could hardly even stand on my feet for more than a few minutes. My endocrinologist didn't know what else to do, saying that he was sorry, but that this was probably as good as it was going to get... and that I needed to be realistic and just accept it...
In the fall of 2004, I received a new CPAP machine - one that had an automatic pressure sensor. I figured it might work better than the old one and sure enough it did! I felt such an improvement that I went to the bike shop and bought a hybrid bike! I was too heavy to hop on my old road bike but the hybrid worked like a champ. I was only able to go around the block, but the important thing was that I was back on the bike! That led to my big comeback of 2005. Along with the new CPAP, and better managing my hormone medications, I was able to begin working out consistently. By summer, I was back on my old road bike. Using the Body-for-LIFE program I dropped over 100 lbs! Clearly, THIS comeback was the real deal! Finally!
I had a rough time in the Spring of 2006, which was expected since it was allergy season, but I figured by summer I'd be back on track with my fitness program. But I kept waiting and I wasn't feeling better. My endocrinologist again insisted he was doing everything that could be done and that I couldn't blame everything on medical issues. What?! He strongly suggested that I needed to see a psychiatrist or I wouldn't get better. The psychiatrist laughed at my doc's assumption, saying he knew what depression was and I didn't have it! He said he was amazed at how happy I was, considering that I had struggled with illness for so long. I figured it was time to get a new endocrinologist!
The new endocrinologist gave me a stunning assessment on our first visit. His theory was that maybe my pituitary gland was actually still functional, just mostly dormant. If that was the case, occasional activity from the pituitary gland would cause all sorts of erratic hormone levels making it impossible to get my levels dialed-in and explaining why I was still struggling so much! I was stunned by his theory, but it sure made sense! I then had a pituitary stimulation test done and son-of-gun my pituitary gland responded! Unbelievable! He then proposed that we try to restart the pituitary gland using a long process of slow withdrawal from the hormone medications. Although there was a slim chance that it would work he insisted that it was my only real chance to get better. So for the next few months, I gradually tapered down, hoping this would actually work.
The specialist had warned me that tapering off of hormone medications such as Cortef - which is what was being used to maintain cortisol levels - could be as rough as withdrawing from heroin. I was skeptical of his warning until I started getting down to the lower doses. I felt exhausted and started experiencing anxiety, claustrophobia and sleep difficulties. Eventually, I reached my limit and increased my medicines back to the old levels.He was disappointed that I had aborted the withdrawal, but I just couldn't live like that. In the Spring of 2007, I figured I'd try the withdrawal process again, but by April, the side effects were so severe that one night I found myself so desperate that I called a suicide hotline. I wasn't suicidal or even close to it, but I was so anxious and emotionally being stretched that I really needed to talk to someone - now! - and since it was 3 in the morning, I couldn't call friend or knock on a neighbor's door! Anyway, I abandoned that withdrawal attempt as well and figured I'd just have to live with my greatly diminished health...
In January 2008, my doc suggested we try the withdrawal process one more time, but this time we would go much slower. The plan was that we would take a year instead of just 6 months and hopefully avoid the severe side effects that I experienced before. I figured I had to give it just one more try... After 6 months, I was encouraged because I wasn't having any severe side effects. Then in August, my doctor informed me that the lab tests indicated that my pituitary gland had restarted! Amazing! Miracles do happen! Now, I truly do have a new life!
For the rest of 2008, the focus was on continuing with the withdrawal process until I was completely off of all of the hormone meds. In the Spring of 2009, after being on full hormone replacement since 2001, I took my last dose of Cortef. Because it was allergy season, I wasn't surprised that I was still dragging. I figured by summer I'd be back to riding the bike and feeling the full benefits from my restarted pituitary gland. But by April, I was as sick as I had been in years. It was the same flu-like symptoms and fatigue that I had been told all these years was because of the pituitary disorder! Apparently, that wasn't true! I was stunned! What the heck happened?! None of my docs had any idea and once again I decided I'd better put on my doctor hat and sort this out...
I had unexplained skin rashes that first appeared in 2001 and my dermatologist was never able to effectively treat them. They had been better in recent years, but were now back with a vengeance. I then started asking myself what condition similar to mine was treated with any of the meds I was taking for the pituitary issue and thus would flare up after withdrawal? After lots of research, I came across info on Celiac. I'd never even heard of the illness, but sure enough it sounded like what I was going through! When I saw the part about Celiac causing skin rashes, I knew I was really on to something! Eventually, tests confirmed what Dr. Jim (me!) had diagnosed. I started on a gluten free diet and by the end of the summer I was rolling up miles on the bike like I hadn't since 1995...
The spring of 2010 was the usual downtime due to the allergy season, although it hit me harder than I expected. But by summer, the pollens were down and I was back to putting in long rides on the bike. I was still far from well, but by putting most everything else on the back burner I was able to do enough training to complete a 100-mile ride in October. Shazam! Now we're talking! I really looked forward to 2011, hoping I could take my fitness back to the high level it was in 1995. I still hadn't made it below 230 lbs, but that sure beat the heck out of 330 lbs in 2004! I wasn't surprised that I was derailed again by illness as the pollen season unfolded... this was pretty much standard procedure every year. It wasn't like what most people think of when they think of allergy issues. I had started every day since early 1996 with a significant level of sickness. Triggers such as gluten and pollens raised it to a profound level. The various medical conditions among the way certainly made things even more debilitating, but even on my best days, I still was far from functioning at a normal level. My best time of year was usually August through October - but in 2011, my good time of year never showed up.
I rode out the allergy season in 2012 mostly on the couch, but when summer arrived I once again didn't see my usual improvement. My thyroid disorder, Celiac, sleep apnea and asthma all seemed well under control so I just didn't understand why the underlying illness continued on at such a debilitating level. I then started to reassess my medical history and look for a common thread. Clearly, most all of my stuff over the years was driven by an underlying autoimmune condition - where the immune system attacks the body. My doctors pretty much agreed, but still had no answers as to why I still felt so sick much of the time. The general diagnosis was autoimmune-driven chronic fatigue, but no treatment was prescribed. Basically, I was told I'd just have to live with being sick and that compared to their other patients they thought I was doing extremely well! Small consolation!
I then figured that my best bet was simply to address the main triggers - gluten and pollens - with the goal of minimizing the flare-ups of the autoimmune condition. I had been getting allergy shots for months and made it a goal to stick with them. When the new year rolled around, I was determined that 2013 would be my big comeback year. Based on the previous 2 disappointing years, it took a lot of work and faith to get my confidence back. But I stayed with my fitness program and noticed right away that this allergy season wasn't derailing my exercise program. The best I could figure is that the allergy shots had finally provided the maximum benefit and that was helping keep the autoimmune condition at bay. I still felt sick every day, but at least it was workable. However, I had enough energy to do my daily workout, but not usually much more than that. So I pretty much put everything else on the back burner and made getting the weight off my top priority.
By November, I had dropped an amazing 90 lbs in 2013! I was thrilled to see things finally come together! I was even able to participate in a couple of time-trial bike races! Holy smokes, this was a whole new life! I got back a few pounds over the holidays, but started 2014 with tremendous excitement, anxious to get those few pounds off and within a few months finally be back at my normal weight. But I had an unexpectedly rough January and February with the daily sickness usually being at a profound level. I was still able to get in a workout here and there, but once again illness was starting to derail my big comeback. I had missed my monthly allergy shots last December and figured that maybe that was a key factor behind this rough spell. But I had been back on allergy shots for over a month now and wasn't getting better.
That's when I decided it was imperative that I at least see some other doctor with the hope that someone can help me. My instincts over the last couple of years have been telling me that something significant was being missed and that if I kept searching eventually some doctor along the way would have some answers. So that brings me to last week when I saw a new rheumatologist. I didn't expect him to come up with anything significant. I figured it was likely that he would also tell me I just have to live with it.
But within minutes after discussing my medical history and symptoms with him he said he knew what I had and he knew how to treat it! Holy smokes! After more than 15 years of seeing doctors for this condition, this was the first time anyone ever provided a specific diagnosis! He prescribed a medication that had proven to be effective for my condition - a variation of chronic fatigue syndrome that occurs in some people with autoimmune conditions. I was skeptical yet optimistic. But the first day on the new med was extremely encouraging. Within a couple of hours the medication cut through the profound sickness and it felt like a huge burden was being lifted off my body. The last several days have been just as good and this is clearly looking like a big breakthrough!
Only time will tell how this plays out - whether this medication helps me long-term - but the most important thing is that I finally have a diagnosis of the underlying condition that has been there since this journey began... way back in the summer of '96...
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