Testosterone and PD: I have learned my... - Cure Parkinson's

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Testosterone and PD

hmm777 profile image

I have learned my helpful things on this forum, so in the hope that it will prove helpful to others I thought I would share my positive experience with testosterone replacement therapy (TRT) in the hopes that this information might be helpful to others. Obviously, TRT is relevant primarily to male PWPs and their caregivers, but there may be equivalent hormone therapies applicable to women.

I am a 54 year-old PWP, diagnosed 5.5 years ago. Until a few months ago, my most challenging symptom was fatigue. I was simply exhausted all the time, with corollary problems like apathy, brain fog, etc. A particularly important related problem was my inability to recover from exercise. We all know how important exercise is to slowing the progression of PD, but anytime I exercised intensely enough for it to be of any benefit, I would be completely useless for days afterward. I could not keep to a regular exercise program and real "training" was a pipe dream.

My MDS addressed this problem by steadily increasing my Sinemet prescription. This didn't help; in fact, I think it made the problem worse as Sinemet makes me feel a bit ill. Thus began a spiral: at each visit, I reported feeling worse and my tests showed deterioration; my MDS treated the results with more Sinemet, which (I believe) made me worse; wash, rinse, repeat.

Then, in the course of my research, I stumbled on the following article:

It has been shown recently that male patients with Parkinson’s disease who have testosterone deficiency may have symptoms resembling non-motor parkinsonian symptoms. Because of the similarity between the non-motor symptoms of Parkinson’s disease and the symptoms of testosterone deficiency, clinicians may fail to recognize and treat testosterone deficiency in patients with Parkinson’s disease. The identification of testosterone deficiency may have a significant impact on the long term course of the disease, as symptoms mistakenly labelled as non-motor parkinsonian manifestations could be relieved more effectively by testosterone replacement than by other treatments.... Every practitioner who sees patients with Parkinson’s disease should be aware of this common treatable co-morbidity. The diagnosis of testosterone deficiency should be confirmed and prostate cancer excluded before initiating treatment.

jnnp.bmj.com/content/75/1/165

I was intrigued, and talked to my older brother, who had recently told me that he suffered from low testosterone. He also told me that our father had the same problem. So I got myself tested, and sure enough, my testosterone levels were quite low. I talked to my GP and began TRT, and the difference is almost unbelievable. I feel about 20 years younger and have returned to vigorous exercise 6 days a week, including heavy weight training 3 days a week. I won't drone on about the improvements, which are myriad, but I will give a few highlights.

> Not only can I exercise again, I crave it. It feels great at the time; each time I do it, it feels better; and I don't feel wrecked the next day. In fact, nothing would be more disappointing to me than to have to miss a run or a lifting session. What an absolute relief this has been. I used to go to bed worrying that I had not done anything to slow down the PD today; now I go to sleep with a sense of accomplishment, plus anticipation about what I'm going to do tomorrow.

> Most of my sleep issues are gone. I now sleep through most nights, rather than getting up 2 or 3 times to go to the bathroom; i.e., the TRT has fixed both the urinary issues and the general insomnia.

> I can now get 3 or 4 significant things done every day, whereas one (say a trip to the grocery store) would have left me useless and exhausted before.

> My appetite has come back, and I am regaining the weight I mysteriously lost over the last 5 years.

> Most of the brain fog is gone. My concentration and memory are noticeably better.

Anyway, that's my PSA on TRT. I won't go on and on about it sua sponte, but let me know if you are interested in hearing any more. I realize this information will be useful only to that subset of the forum with treatable low testosterone, but out of the thousands of members I'm betting there are dozens if not hundreds, and if it's as helpful to them as it has been to me it's worth getting the word out. (BTW, my research also revealed that there is something of an epidemic of low testosterone these days, probably due to diet.)

I can attest to what a relief it is to be dealing with "just" PD. Never thought I would say that.

Cheers.

23 Replies

I've been thinking about this since a long time...!! Thanks for sharing your experiences. Can you pls describe your testosterone treatment protocol? Also, any change in your Sinemet dosage? Do you take Vit B1? Thanks in advance..

hmm777 profile image
hmm777 in reply to dadcor

There are a variety of treatment options, including creams, patches, injections, etc. I opted for the injections because they are much more accurate than testosterone passed through the skin and therefore make it possible to fine-tune the dosage more reliably.

My initial dose was an injection (self-administered) of 80MG/0.4ml every fourth day. After several months, we increased this to 100MG/0.5ml to raise my testosterone to the desired level. Some people might be leery of needles, but my daughter is a Type I diabetic, so we've been doing injections at home for years and years. Oddly enough it's been a bit of a bonding experience.

My Sinemet level has not changed yet because I won't see my neurologist until November. At that appointment I hope to begin stepping it back down in increments. We'll have to see how that goes, of course.

I do not take B1, at least not yet. I have been considering it for a long time and will probably do it, but I don't like to begin one treatment protocol while I am still evaluating another, so I'm waiting until I feel like the TRT is completely dialed in.

dadcor profile image
dadcor in reply to hmm777

Yes, injection is for sure the most reliable way. I'll do the same if needed.. Thanks a lot, wish you further improvements..!!

Zardoz profile image
Zardoz in reply to hmm777

Hmm777, thanks for the informative post. Regarding the injections, are they into fatty tissue like the buttocks or somewhere else?

hmm777 profile image
hmm777 in reply to Zardoz

The injections are intramuscular; i.e., they are made into a large muscle like the gluteus or quadriceps. This calls for slightly longer needles than, say, subcutaneous injections like my daughter's insulin jabs. Most IM self-injections are made to the quads, as the buttocks are hard to reach for obvious reasons, but some people prefer to make them to the deltoids.

Zardoz profile image
Zardoz in reply to hmm777

Thanks for the reply. I believe I've read or heard that you need blood tests about twice a year to monitor T levels.

hmm777 profile image
hmm777 in reply to Zardoz

Everybody responds differently, so at the beginning of TRT you get tested a lot, but this tapers off. I am currently tested every six weeks to monitor levels of estrogen (can rise with TRT, and too much can cause gynomastia), hematocrit (too many red blood cells can cause all sorts of problems), prolactin, etc. Once the dosage is dialed in, this drops to four tests per year and perhaps fewer.

Btw, at the clinic I go to all of the testing and all of the testosterone (and paraphernalia like syringes) is included in a monthly fee, most of which my insurance covers.

Thanks for sharing, it is very nice to read these things. I'll do the Testosterone test as soon as possible. What level was yours? What did you do to make it grow? About the neurologist....no comment. Thanks.

hmm777 profile image
hmm777 in reply to Fed1000

We did three separate tests over several weeks, at different times of the day. The first test was very low indeed: 227 nanograms per deciliter (ng/dL), which is low enough to be concerned about osteoporosis and heart disease. The other two were in the low 300s; i.e., quite low, but not alarmingly so. Here in the US, treatment is often advised at 350 or lower, but this varies.

See my response to dadcor (above) for a description of my treatment protocol.

"Normal" levels tend to be between 400 and 1,000 ng/dL for adults and higher for teenagers, although there is now significant disagreement about this range and there is a trend towards lowering the low end, partly because testosterone levels across the population are steadily and somewhat mysteriously decreasing, thereby steadily redefining "normal" downward. This decline has been variously attributed to everything from diet to pesticides (our old friends) to "cultural factors." Somewhat bizarrely, discussions about why they are decreasing can become intensely political; suffice it to say that they are trending steadily downward, with potentially significant health consequences.

Thanks for sharing. I suspect I have got low levels myself and have brought it up with my neuro. But she said I had to disscuss it with my ordinary MD, which I have not done yet. Testosterone therapy is for some reason not so easy to get where I live.

Horny goat weed is supposed to increase testosterone. examine.com/supplements/hor...

Very interesting. There are average ranges for T in women too: healthgains.com/blog/normal...

Hmm777 I cant thank you enough for sharing! I have been absolutely exhausted after work for months, and was focused on REM sleep, or lack thereof. What you described pre-trt is exactly how I have been feeling!

I have made an appointment to see my doctor to get labs ordered for testosterone levels to see where I'm at, and then go from there.

Pre-PD I used to run a 5k 3 times a week and strength train in-between, now a two mile walk wrecks me. Zero energy all day..

Hopeful that this is the problem! Thanks again!

hmm777 profile image
hmm777 in reply to SAGoodman

No problem, SAGoodman, I hope it ends up being helpful.

Btw, in regards to your comment about REM sleep, the other thing that has helped me a great deal is a CPAP. I did a sleep test and was diagnosed with mild sleep apnea; although it was mild, in combination with my RBD (REM behavioral disorder) it was apparently enough to cause a very serious energy deficit. If you haven't already, you might look into that as well. My sleep neurologist (yes, for my sins I have one of those as well) says that even mild sleep apnea is very bad for PWPs and should be treated. She had to talk me into it -- I really, really did not want that thing on my face -- but she was right; it changed my life.

Oh, and a weighted blanket has been very effective in reducing the RBD.

Apparently a fairly common issue in PwP. This study link suggests it may also be a contributing factor for apathy in PwP :

ncbi.nlm.nih.gov/pmc/articl...

Art

hmm777 profile image
hmm777 in reply to chartist

Art, the link is to a search result for articles on pulsed electromagnetic field therapy. I'd be interested to see the study you mentioned, if you could correct the link.

chartist profile image
chartist in reply to hmm777

Sorry for the wrong link. I was looking at several things at once and posted the wrong link. Here is the correct link showing that low testosterone is common in PD and can result in apathy :

ncbi.nlm.nih.gov/pmc/articl...

I'll correct the other link also.

Art

Which test needs to carried out TOTAL or FREE

hmm777 profile image
hmm777 in reply to Farooqji

Both levels are calculated in a comprehensive test of "testosterone" levels, along with many other factors, such as sex hormone binding globulin (SHBG), prolactin, estrogen, etc.; and both numbers factor into the determination as to whether treatment is advised and if so the appropriate dosage.

Has testosterone therapy slowed your overall disease progression?

I'm not sure that's an answerable question, but I'm going to hazard a "yes" for the short answer.

The long answer is still yes but with some qualifications. For one thing, I'm only four months in. More importantly, I'm not sure how you would measure whether the PD has slowed when there are other, massive systemic changes going on. I feel a thousand times better, my posture has improved (my daughter says she barely recognizes me because I stand and move like somebody 20 years younger), I can exercise intensely 3-5 times per week as opposed to zero, I respond to suggestions and invitations with a "sure, let's go" rather than a "nah, I'm too tired," etc. Presumably, whatever progression-slowing benefits there are to vigorous exercise, I'm now reaping them, so I would say "yes," TRT has slowed overall disease progression, but PD is only part of "me," and "me" has actually gotten (massively) better from baseline, so the improvement is more than slowing a downward trend it is a gigantic upward improvement. If that makes any sense.

Another way of saying it is that if there is still a downward disease progression it is utterly swamped by the improvement, so I can't detect it.

eschneid profile image
eschneid in reply to hmm777

Xlnt answer! Really happy for you that you feel younger and can do all of your exercising and more.

I have thought about getting tested for a while and not pulled the trigger. Most of it is due to reading about the side effects of TRT.

Apparently it may be worth asking your doctor to check your testosterone level to see if it is low. In this single case report the patient was able to improve resting tremor and fine motor control after correcting a testosterone deficiency.

pubmed.ncbi.nlm.nih.gov/164...

Art

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