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Xuzuthor's Story

*Note, some of this will be what I assumed happened to the best of my knowledge. A full diagnosis has not yet been made.

My symptoms started during my last year of college. I had been a gymnast from 4th to 12th grade, which I had done 16 hours a week, so I had been used to being in excellent physical condition (very little body fat, quite a bit of muscle mass). My college did not have a gymnastics team so I had quit and focussed on my schoolwork. I did gain some weight, but on the order of 10 lbs or less.

I made many changes in my life all at once, and I made those changes all at a very stressful time in my life. I had always had acne so I was taking acne medications. At the time I made these changes, I had just switched to a different type of acne medication (Minocycline). I also started to weight lift and diet. My body was shocked. I think it just couldn't take that much stress, and it triggered my problems or perhaps they had already been there and this escalated them.

I was tired all day, and my mind was very fuzzy/unfocussed. I also was very overly emotional. The slightest frustration could send me into a panic or depressive episode. I did not know what was causing it; I had all of those changes that I made at once. To make matters worse, my insurance did not cover visits in Wisconsin (I was originally from Minnesota and just going to school in Wisconsin). Classes were tough though. I was a software engineering major so I needed all of my facilities to program, and with how I was I could hardly comprehend anything at times. I also was sleeping a lot so I had less time than I was used to to get my work done.

It turned out the only way I was covered was to go to the ER so I went to a hospital and waited. I believe in all it took them 8 hours to see me (that was before I even got a room). I waited longer while in there. I told them all of the changes and my situation. They ran a blood test, told me I didn't have mono and sent me on my way saying that more results with some other antibiotic tests would be in later. [The results turned up nothing].

During this time, my sex drive also started to diminish. This was also complicated. I had just recently started to date and had my first sexual experience. I had some guilt over it so I assumed my sex drive was diminishing from the guilt.

I modified my diet to include more fat/calories and also school got a little less hectic. Between the two or perhaps even for no reason, I became more stable. I was no longer lethargic although my sex drive stayed low, which I still attributed to guilt. I had had significant hairloss about 3 months after the initial change, which I found could have happened due to my diet and stress. I made sure my diet was perfect from then on just in case my diet was the cause. I made sure to get 1800-2000 calories every day, and I continued to weight lift. I read tons of nutritional information [When I do something, I fully learn everything I can. I am a bit of a perfectionist]. I could now call myself a nutrition expert; there are very few nutrition related facts I have not read and remembered. My goal had been to get "six-pack" abs, or more specifically just make myself look like what I did in high school, if not even a bit more toned. I thought I could do it rather quickly. I did lose weight, but my abs never changed. Over time, I lost 15 lbs (down to 145 lbs). Unfortunately, even though I was on a high protein diet, much of the loss was muscle mass. I blamed myself. I was confused since I was eating a decent amount, and I had no fat loss except on my legs and buttocks. My abdominal fat stayed. I was upset at the lack of my effort to do anything, but not deeply upset in that I did not think I was in bad shape before losing any weight to begin with. If anything, I was upset at losing my leg/buttocks muscle the most. Floor had been my favorite event at gymnastics, and I lost a lot of muscle in my legs, perhaps on the order of 10 lbs even. It frustrated me, and I considered just giving up on working out (I did not have to consider giving up the diet since I liked the foods I ate anyway; it was only a bonus that they were healthy as well). I did not though because I rarely give up on goals of mine no matter how impossible they may seem.

Eventually, my sex drive completely went away. Perhaps an occasional spark was there, but it almost fully went away. I was slightly lethargic on occasion, but I just thought perhaps at those times I was not eating enough so my body was telling me to eat more. I thought it was normal for losing weight although it also scared me since I thought it may mean I would lose more muscle since perhaps it was too extreme. Once again, I just reminded myself I was eating a decent amount, and I pressed on. I liked how I ate (quite a few vegetables, quite a bit of lean meat, small portion of grains, small portion of nuts/butters/oils, occasional fruit, occasional cheese, daily multivatamin supplement and calcium supplement).

I actually got lucky at this point. I had been working as a software engineer by now, and it took me a while, but I found a primary care physician. I had a basic introductory checkup done, and when she asked me if there was anything else, I offhandedly mentioned my sex drive. I also asked if they would check my thyroid just to be sure since my dad was hypothyroid (I thought there was a very very small chance that my fat wasn't going because of my thyroid and perhaps it made me tired as well). She tested both my thyroid and testosterone levels. My thyroid was fine, but my testosterone was extremely low, about the level of a woman's. It should have been 10 times what it was.

I have since then gone through many many tests. That first one was on 4/1/2004, and I have done testing up until now. At first my primary care physician did the tests, including an MRI, which found nothing. After the MRI found nothing, I was sent to an endocrinologist. It turned out that the one I was transferred to did not have an opening for many months. My symptoms had started to escalate since the first test and waiting would be unbearable. I was extremely lethargic, had mood swings, was very weak (my workouts seemed like torture, I even cried during a couple of them), and had to eat very frequently or symptoms would worsen. I have had my cortisol tested many times, and some have shown to be high. I had done salivary cortisol samples (two 2-day samples and one 3-day sample), which showed high and I've done a 24 hour urine collection, which also showed high cortisol. They only gave me one container though so I ended up using containers from my home as I had no other option at the time (they were not open on the weekend and I had not known beforehand that I would need so many). I would have needed 4 as I urinated about 8 liters [I was constantly thirsty as well as hungry].

He had decided to transfer me to an endocrinologist who has more experience with Cushing's.

The appointment with the new doctor was in 3 weeks from my last test with the old endocrinologist, 7/23/2004. I had many problems functioning at work all the time. I had to take some vacation/sick days just because I was not capable of working at the time. During my worst times, I was not even capable of simple tasks. I do not know how I will make it through.

After more tests with the new doctor including including a water deprivation test, which showed that I was just drinking too much water (it was not from a hormonal issue) and more cortisol tests he pretty much told me he had done all he could and suggested I explore other areas (infections and psychological I assume). That is when I decided to go to the Mayo clinic.

The Mayo clinic was a bit disappointing. He looked at my medical history and said that he suspected it was all caused from depression, but would test to make sure anyway. They ran a ton of tests, pretty much all of which were searching for bacterial infections; they found nothing and stated that I was depressed, but could likely benefit from a testosterone increase (1.5 packets instead of 1) as well (since I was at 211, which is quite low for my age).

Since then, I saw my endocrinologist again who tested to make sure I should get an increase of testosterone and to determine if I should go to 1.5 or to 2 packets. He said my value wasn't bad so I didn't need a further increase. I then mentioned if I should at least increase to 1.5 like Mayo suggested. He said yes; he had thought I had already [I guess he forgot that he told me to wait until he tested]. He said he'd see me in 6 months for a checkup. Of course, I didn't let him get away with that. I pleaded with him saying that I still felt just as bad as before. He then said if the testosterone increase didn't work, then he had exhausted his options. He had pretty much given up. Did he give up or did he think I was just making up my symptoms?

Well, the testosterone increase did nothing although it had made my acne a bit more extreme.

I also had a glucose tolerance test ran by my primary care physician (since my endocrinologist was unwilling to explore anymore). I figured since my symptoms were always more extreme when I got hungry that perhaps it was a glucose problem. My results were normal though (my glucose has always read as normal, on the low side of normal, but still normal nonetheless).

I then went to LA and saw another endocrinologist. He decided that I was hypopituitary and losing more and more hormones. He believed that perhaps my gland had been damaged from my bicycle accident as a child. He did a lot of blood work and had me do a pituitary MRI.

The results came back in a couple of weeks, and many things were found. It was determined that 1.25 packs of testosterone would be best for me, that my growth hormone was quite low, and my thyroid might be low as well. He also put me on Florinef for my low aldosterone, which was the reason I had always been thirsty. I wasn't simply "just drinking too much"; I had a reason for it.

The florinef helped in a couple ways. I no longer "blacked-out" (seeing everything as black) upon standing, my balance had improved, and I was not as thirsty. Perhaps these things didn't matter much to me, but it was nice to have another piece of the puzzle.

The biggest discovery was a 4.5 mm tumor on my pituitary gland. This discover made Dr. Friedman think that Cushings may have been the more likely cause of my problems, despite my non-cushing appearance. Either way, I was diagnosed as hypopituitary; it was only the cause that was in question.

I had a growth hormone stimulation test done (11/27/04) to determine if I required growth hormone therapy, and I assumed that I would since my IGF-1 had been so low (78). I also was supposed to have 4 UFCs, 2 of which I had done (11/30 and 11/31) and believed I was on a cortisol high at the time) although they ended up only being slightly elevated. I was supposed to do 6 salivaries as well, but had to wait quite a bit for those kits to be sent.

The growth hormone results came back, and it was found that I was obviously quite normal so I was not able to get growth hormone supplementation. It was a good thing as it meant that it was for sure the tumor and not just brain trauma, but it still devastated me to know treatment was still a long way off. I would have to test high for cortisol first, and the first round of salivaries and UFCs showed as normal and some slightly elevated, but not enough to warrant surgery, thus indicating it would be a long process.

Every since my first initial high (Feb 2004), I had been in a low period, and every day was hell; each day varied, but each a variation of hell. I couldn't think of many ways to make it worse, medically speaking. I could even have dealt with pain and terminal conditions better if I did not have my mind and personality affected. I learned to deal with pain very well as a gymnast; while I might not like it, it is much easier to take than my mind being so cloudy, my concentration being shot, and the horrible mood swings (anxiety/depression). The thought of a week was aweful; the thought of months was tragic; the thought of a year was unbearable. That was why I have stopped thinking about the past and the future. Both only upset me. The past was taunting because I remembered how hard I worked to have a great future or I remembered that taste of what that future could have been. True, I had started to experience symptoms (diminished sex drive), but it was not so bad after college was done. I had free time; I had a great job; I had a good income; I had good friends; I had a good personality; I had good prospects for finding love; I was on schedule for achieving all of my goals. It was all I had wanted, and while it perhaps was a lot for some, I had worked at it my entire life so it was an easy goal to achieve once college was done. I just wanted to maintain what I had and move to someplace warm. That was all I wanted. It was the most wonderful time of my life. I had it all. True, there were stresses, but everyone had those. Ever day had wonder to it. I could do anything I wanted; I was free. No homework, very little stress. Of course I was happy; I had no reason to be otherwise.

To think of the contrast of that with what I then felt was astounding. I could go months without remembering what that feeling was like (part of which was intentional as I just got nostaligic and depressed). That feeling of wonder and awe; everything seems like a gift and possibilities are everywhere; you feel on top of the world.

I had tried to make myself able to think of the past without getting depressed, but it hadn't happened. One day, I went out to the bar/club I used to go to. It was the second week I had done so after I was dumped; I wanted to reconnect with old friends. It worked out well. A few sat and chatted with me and came to my house the following Thursday to watch a movie. I enjoyed it. So, I went out again. It was fine, but they eventually went upstairs since I went on a Saturday instead of a Friday. Most people dance on Saturdays; I love to dance. It is one of my passions. I get into the music, and nothing in the world exists except for me and the music. Actually, people have even asked me for drugs before since they assumed I was on something to be so spacy, but I have never done anything, not even smoked.

That was no more though. Dancing hurt quite a bit. My joints were so sore, and I was much too lethargic to move that much. Just too much of a distraction to even get into the music even if I had the energy. Also, my mind would not be clear enough to dance in the way I would like. I couldn't get into that mode with all of the cloudiness. I did go upstairs that night though. They had remodelled since I'd been there. I walked around, and the positive part is that the music was pretty good again (it had started to degrade at the end of the time I was there). The place was busy, packed with people, but I had to walk through faster. Tears started to build in my eyes as I noticed I could only look on. I was not part of it and could not be no matter what I tried. I was stopped by one of my closest friends, who was happy to see me up there. I told him that I was only taking a peak since I had not seen it remodelled. He gave me a hug and chatted about something, never even noticing the tears in my eyes or how I felt. I conitued to hurry along downstairs, back to where the bar was, away from the dancing; I could stay down there and not see the dancing and not feel alienated, not feel nostalgic. The only one noticing the tears was the doorman, who I knew well from when I used to go. He looked concerned, but I did not stop. I left shortly after; I could not stay even in the bar that night. It was a door better left closed.

A new hope arose though. I was found to have an abundance of thyroid antibodies, which were likely attacking my thyroid gland. This meant that I likely had Hashimoto's thyroid disorder, meaning I would need to go on thyroid medication. This was not surprising since my father had that condition as well, and a bit later my grandfather would be found to be hypothyroid as well (they had thought perhaps he had Alzheimers). I was quite skeptical of if this could actually help everything, but I was also working on getting growth hormone as well. Since my IGF values were so low, I could look into getting an experimental medication called trans d-tropin, which would stimulate the pituitary gland to make more growth hormone and thus create a high IGF value. I could use this type of medication since my growth hormone stimulation tests showed that my pituitary gland could successfully make growth hormone if stimulated. Between the two (thyroid and growth hormone), I had some hope. I then went and saw a new endocrinologist at Froedert medical hospital. She stated that I should do one at a time, but wanted to check my values first to see what dose. She also stated how she thought the thyroid medication had a good chance of making me feel fully well.

I was skeptical, but I looked into it. It turned out that thyroid deficiency could cause hypoglycemic symptoms and dementia (the type of mind symptoms I had). I then put my hope in it, and waited for my lab results. I was lead to think it was going to be the next week, but it took 1.5 weeks for the results to come in. At that time, I was told that I would have to take a CRH stimulation test to rule out adrenal insufficiency.

I was not happy with it as I wanted to have the chance at feeling well again (the medication) no matter what risks, but she was not willing to have me take that risk. She wanted to make sure I did not have adrenal insufficiency since I would likely have an adrenal crisis if I did take thyroid medication if that were the case. I said I'd risk having an adrenal crisis, but she was not willing. So, I had to make an appoinment for the CRH stimulation test, and they only had an opening in another 1.5 weeks. Considering that results would not come for another couple weeks after that, it meant almost a month until I would be able to start on thyroid medication. If I showed up as questionable for adrenal insufficiency, it would have meant more tests and more waiting.

Since around Christmas (2004), I had been on a high as well, similar to what I had been around February. Many of the symptoms were not as bad except my mind was much cloudier. I had more energy and ached less. I started to go out on occasion and drink some caffiene at times; I rarely tested anymore anyway; I had not seen the point (cortisol testing). I tried to distract myself from it all. The hard parts were during the day at work when I had to think with my extremely cloudy mind.

I eventually had the CRH stimulation test and did produce enough cortisol although my results were somewhat questionable. For that reason, I was started on half the dose (50 mcg) of synthyroid on February 24, 2005. I was supposed to wait 2 weeks until increasing it, but I had severe mind/memory issues and was making huge mistakes so I started on 100 mcg on February 28, 2005, without the doctor's permission. It has been almost a week and a half on the full dose and I do not feel much different, I think.

I have also since then gotten a blood glucose monitor (March 3), and immediately that weekend, the first time I tried on my own I had a value of 59, even though I was full and had just ate. Anything under 70 is indicative of hypoglycemia so I was diagnosed as hypoglycemic. It really didn't mean much as I knew I was already, but I now was able to meet with a dietition about it. The first opening was not until a month and a half so I'm scheduled for April 19. My next appointment with Dr. Maas is for April 22 as well, but hopefully my hormone levels will be tested before then.

I am quickly losing hope for a cure. I am now diagnosed with having low testosterone (hypogonadism), thyroid (hypothyroid), aldosterone, and blood sugar (hypoglycemia). I am being supplemented for all (well, for hypoglycemia I just make sure I have a good diet with little/no refined carbs), and besides minor changes, I feel the same as I did before treatment. The thyroid may be making me lose a little weight, but I can't tell for sure. Besides, that could be that I am trying new dietary changes to see if it will help with my hypoglycemia (had started those before even diagnosed with hypoglycemia since I knew I had hypoglycemic-like symptoms a year ago...and even called them that).

Another possible option is that I am also adrenal insufficient, as was mentioned. The part that does not make sense is why I did not react when starting the thyroid medication if that was the case.