Erdheim-Chester Disease (ECD) Community

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ECD and Low Testosterone

I recently returned from my second visit to NIH. After donating twenty nine viles of blood, I learned that my testosterone was very low. I also learned that low testosterone is common in men with ECD. I was given a weeks supply of patches at NIH. Almost immediately, I felt better and had more energy. I couldn't wait to be prescribed a treatment once I got home. With the improvement I've felt, which also includes mood, I would recommend that anyone who hasn't been tested for it, ask their doctor to check your level during your next blood test. It's made a difference in how I feel and function.

Thanks for sharing this info, Larry!


Thanks for sharing this. I think this information has a potential to help others who might want to bring this topic up with their treating doctors.

I hope other patients might share their experiences with testosterone testing and any associated treatments they might try.

Peace and blessings,


Good post Larry. I was diagnosed with low testosterone 6 months before the ECD confirmation. I think the testosterone replacement is helping my general well being and assisting with ECD manageability


Is anyone going to the Symposium in October?

Hi Larry - I was diagnosed with DI seven years ago and then low testosterone the year after. They thought at the time it was due to me having had testicular Cancer however now they know differently. Was diagnosed with ECD last November - (2012).
I am on a Depot injection - Nebido - certainly struggle as it runs down.


I also have Low T. Had a testicular biopsy done to determine why and they found Rosai Dorfman Disease had completely taken over my testicles (a histiocyte disease in the same family as ECD). I am now on Testosterone replacement therapy.


I flagged that up with my Prof last year as i found an article on line saying a Chinese man had been misdiagnosed with testicular cancer and then they found out it was ECD. They must keep all the testicles in a freezer or a jar somewhere (i'm laughing here!) as they retested the extracted testicle for it and said the original dx was correct. see above for dates etc.
Have been on nebido a depot injection for eight years now. Glad youre feeling better.
Do you feel you get highs and lows out of interest. My results always are on the plus side but they fluctuate and I think my body senses that.

To soon to tell. Just starting to to set my levels now. But at my current injection I'm not feelin like my low is to low.

I've been on a testosterone patch for two years and it is still helping with energy and mood. The patch makes traveling through airports interesting at times, as I am usually patted down, and have been taken to TSA's little room. I'm currently on vemurafenib and the medicine has shrunken my testicles a little bit, but they are still there. No other complications. They were extra sensitive for about two months, but are back to normal. What a fun life we get to live.

In early 2013, my first issue was "granulomas" on my testicles. One of them was removed and biopsied and was found to have the granulomas comprised of histiocytes among other cells. In November of 2013, I had trouble walking and could not feel below the ribs very well. I was found to have a tumor on my spine that was compressing it. they removed enough to allow control and feeling as normal. The biopsies again showed histiocytes as the main component. I have either ECD or RDD, they do not know which for sure. Between the steroids and chemo and ECD or RDD and the removed testicle, my testosterone was VERY LOW. I am now on the patch and feel much better. My ECD Dr. at Mayo thinks the low T is due to the testicle being removed, but I don't think so. Either way, get it checked and get treatment if needed.

I wonder if this also is one of the reasons why ECD patients feel tired much of the time? I really do not get tired anymore? Also, do female ECD patients have any hormone "problems"? that possibly cause their pain?