What I Learned When I Stopped Testosterone Replacement Therapy

A difficult treatment decision ultimately paid off for columnist Paris Dancy

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by Paris Dancy |

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In 2018, I decided to stop using testosterone replacement therapy due to the side effects I was experiencing, most notably, increasingly aggressive behavior.

One concern I had at the time, though, was that ending the treatment would cause an increase in Cushing’s-related symptoms, because other hormones might be affected. This treatment had addressed my low testosterone levels caused by a pituitary tumor.

I do not recommend abruptly stopping treatment like I did without consulting a professional first. Although I am now seeing the benefits of my decision, it was not an easy road, and at one point, I began to question if my choice was the right one.

The first thing I noticed when I stopped taking my injections was that my mood deteriorated. Feelings of sadness led to an occasional lack of motivation. This sadness was partly due to my reluctance to stop the treatment. While I believed the medication was working, I became aware of how the side effects were affecting both me and those around me. Also, my body had grown accustomed to it over the past year, which led to more emotional imbalance.

The lows in my mood started to improve with effort, such as doing more research on ways to naturally balance testosterone levels, tinkering with areas of my life that were affected by testosterone, and being more active. Eventually, these strategies led to drastic change.

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These Routines Helped During My Cushing’s Recovery

The second effect of stopping treatment was fatigue. The best way to describe it is like working outside all day in the heat. To combat it, what worked well for me was a combination of a plant-based caffeinated green drink, vitamin C, and vitamin B12. This drink has been part of my morning routine for the past four years, since ending testosterone replacement therapy.

I don’t like coffee, so it was a good alternative. I also wanted to stay away from most store-bought caffeinated drinks due to their high sugar content.

Other issues I had to deal with again were pain and stiffness, mainly in my feet and lower back. If I was sitting or lying down, my feet would ache when I got up or tried to move. When standing, my lower back would get stiff. It didn’t matter how long I was standing, it just appeared to happen randomly. Of the various side effects, the pain and stiffness took the longest to overcome.

To relieve the pain, my wife bought me some braces. I used them for a while but didn’t experience much of a change. Then, one day, I started noticing that there was no more pain. This continued to improve each day. I suspect that the amount of weight I had been carrying due to Cushing’s disease was creating stress on the lower parts of my body, such as my knees. That might have compressed my spine, ankles, and feet. Once I began stretching and being more active — including walking 2 miles a day — these areas of my body grew stronger, which helped to alleviate the pain.

Given all of these experiences, I eventually learned that I had to give myself time. Quitting testosterone therapy wasn’t a process with quick results. It helps to stay positive and motivated, and to take things one day at a time. The peaks and valleys of our journeys shouldn’t discourage us from the goal of getting back to optimum health.

The decision to stop any treatment is not one to take lightly. It’s always important to talk to your healthcare team before making any changes to a treatment regimen. Doctors can also help you develop a plan of action to replace a particular treatment, if needed.

Today, my energy levels are up again, I’ve seen no signs of aggression in my behavior, and my overall sense of well-being has improved. For me, stopping testosterone replacement therapy was worth the trouble because it forced me to look at my mind and body as a whole. The trade-off has been beneficial, and it allowed me to live a healthier lifestyle.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.


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