Friday, January 20, 2012

During one of my resent doctors appointments a new deficiency was discovered. The frustrating part about this new discovery was that the test was done some time ago but the doctor that ordered the test and delivered the results decided it was not a big deal. He was the right doctor to order the test, read the results and take action. This is part of his specialty. When they called me with the results they said my testosterone was a little low. I was concerned about some other levels that had continued to decline even on treatment so I was focused elsewhere. Then on Monday I saw my gyn for a followup. He looked at all my previous labs and noticed that in August my testosterone was very low at 15. I told him that we had a current lab that also showed it was low but that I did not have a copy and I did not know the number. He searched for the results and found a report that stated it was low but had no number. He continued to look through labs until he found the actual results. His exact expression was "Oh Wow! That is not good." I asked him what the number was and he said it was undetectable.

So what exactly does this mean? Most people including myself thought no big deal this only effects your libido. What harm can this do to your body? I have too many other things to be concerned about. The answer is...it can cause a lot of damage. One of the major problems we have been up against this past year is loss of muscle strength and my muscles starting to atrophy. We have looked into so many causes for this. Unfortunately because of all the neurological symptoms and the damage that was discovered in the white matter of my brain it is difficult to find the exact cause of each symptom. We have chased so many rabbit trails and I have undergone so many test with the hope that we might stumble upon an answer.

To be clear this does not mean that we have an answer to the problem but that we have one more piece of the puzzle. It also means that we have another hurdle to jump. One of the reasons this was such a huge surprise is because I have an endocrine disorder that causes me to have extremely high levels of testosterone. Now I have an undetectable level. This also adds to the mystery of all the vitamin deficiency. To date we are treating for deficiencies in iron, B12, B6, D, and now testosterone. I take supplements for many other vitamins because they are so low and we are trying to prevent a full blown deficiency in those as well. I am taking prescription strength doses yet we continue to watch these numbers fall. The only progress that we have made is with B12 and that is injected into one of my muscles every week. My iron continues to drop. It has dropped as much as 45 points in 8 weeks. I have been through all the test to check for bleeding but so far everything has come back clear.

I had another round of blood work done Wed to see if any of my levels are improving. If they continue to drop and do not improve we will eventually get to a place where I have to start having some of these given by infusion. This is very expensive, time consuming and can cause serious side effects. Our prayer is that we will find the source and start seeing some progress. For now we continue to treat, test and wait.

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