Low-T Update

Hi folks. I promised some time ago to update everyone on the possibility of Low-T due to Parkinson's. I've seen the urologist and here is my prognosis. As I stated last time, I'll be divulging some personal information in this post. Nothing graphic, by far, but I will be discussing sexual feelings. So if that is an uncomfortable topic for you, you may want to pass on reading this.

I went to see the urologist, we discussed the situation in some detail. He finally said there are two things that would potentially eradicate any feelings and functioning of sexual satisfaction: low testosterone being one of them. The other was a hormone that affected feelings more directly. If that was low, it could also cause a problem. So, he ordered me a blood draw to test for both conditions. However, he said while low-T could affect feelings, it wouldn't necessarily affect erectile dysfunction.

So I had my blood drawn and it was sent off for testing. It came back and it had normal amounts of both hormones for my age. Now it appeared I was back to square one. However, the urologist had said something that gave me and him a clue. Because the recommended treatment for being low on the hormone (sorry, I forgot the name of it, but I recall it started with a P) that can more directly affect treatment was, get this, a dopamine-agonist! He said if that was the problem, he could prescribe me a low dose of this dopamine-agonist that I had never heard of or taken. Since I had a normal level of the hormone, then the urologist didn't prescribe it for me.

But it got me to thinking that dopamine may have something to do more directly with the lack of feelings. The fact that I hadn't needed to take any medication to control my tremors, thanks to DBS, left me dopamine depleted overall, only living on whatever my brain was able to still produce, which was obviously not very much.

And, I had not attempted to try a dopamine-agonist to help my low dopamine problems, which extended to more than lack of sexual feelings. I had been having problems with my drooling, and my voice had grown softer, mainly due to feeling like I was attempting to talk through a mouth full of cotton. (I know, I know. There are exercises I can do for that.) But I chalked this up to the lack of dopamine as well.

So, I decided that I would give a dopamine-agonist a try, being that it wasn't know to give people dyskinesia like levodopa does. I talked to my neurologist about it and he prescribed the same dopamine-agonist (being I already knew I could tolerate that one) that I had used before DBS. Amazingly, not only did my drooling lessen significantly, and my voice grew clearer (still have some issues with feeling like I have to yell to talk normal, but it significantly became better), but sexual feeling returned as well, to a degree.

Apparently, dopamine is involved in more than muscle control. I know, I can hear many of you thinking, "Well, duh. It is also involved in the reward system." Yeah, I knew that. However, I had picked up from somewhere that the reward system was separate from the actual feelings. The dopamine reward system goes something like this. You experience a pleasure, both sex and drugs do the same effect, the dopamine system tells your brain, "This is very desirable. You should want more of this in the future! Like, NOW!" This then convinces your will to accede to its demands, and it starts the reward cycle all over again. However, I had read somewhere that having more dopamine didn't equate to having the feelings which set off that reward cycle. Thus, up to this point, I had never considered that my lack of dopamine might factor into my sexual feelings.

But apparently that is the case in my situation. Exactly what the reason for that is, isn't clear. However, dopamine is involved as a neurotransmitter in the brain. It has many functions in that capacity, from sending signals to move a muscle, all the way to what a particular pleasure feels like. I know it can't generate pleasure, but it has the ability to identify some feeling as a pleasure by triggering certain synapses in the brain. That could magnify the sense of that pleasure. At least, that is one theory I have. Unproven as it may be, it at least has the sense of logic to it.

Then I had another idea. When I took the full 100 mg pill of levodopa, it barely gave me some dyskinesia. That should mean that I could tolerate a half dose of it with no dyskinesia. So, I tested it out by taking some older pills I had from Oct 2017. I knew they may not be as potent as fresh, but for the test, I figured it would work. I took 50 mg of levodopa 3 times a day, and again I noticed additional improvements in the non-motor symptoms I mentioned above. So I contacted my neurologist, told him what had happened, and he prescribed me a fresh set of pills of levodopa.

So the gist of where I'm at is that I've had feeling return as a result of increasing the amount of dopamine in my system. I don't have low-T, which is good on not having to have an infusion of that for every two weeks for the rest of my life. So I'm currently happy that my situation has improved in that regard and in other ways. And I still have the benefits of DBS, in that I don't have any dyskinesia, nor the ups and downs of medication on/off times. As a matter of fact, I find it is easy to forget to take my meds because I don't have worsening symptoms to remind me to take them.

I hope this can help others figure out what works for them, and other options. Of course, my experience may not be yours. Be sure to consult with your doctor about any of these issues. But the above is my experience, for what it's worth.