Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: slay on May 17, 2019, 07:53:41 AM
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Hi all,
In the last year I've noticed a pretty significant drop in libido (I'm 39). And over the last couple months, mild-to-moderate erectile dysfunction. I suspect its physiological (vs psychogenic) because after obtaining an erection, even without a partner, I can see the blood leaving much faster than before. Observations & questions:
- Viagra works well even at small doses of 12mg, but gives me a headache, takes the spontaneity out of it, and makes me hate life:)
- Pycnogenol (french pine bark) consistently improves the quality of erections (via increased Nitric Oxide production)
- Vaping cannabis has a very similar effect, which is odd since there's zero evidence of it being physiologically helpful for erections, possibly even harmful. Could it be psychogenic?
- My GP suspects the smaller RBCs of Thal Minors is a factor here, much like Sickle Cell Anemia folks have the opposite problem (erections that don't go down). There's a reason our extremities get cold easier than normal people, right?
- I've also had some shortness of breath the last few weeks. Annoying but manageable, and I've had bouts when I was young as well. Can't tell if it's the air quality here in Puerto Rico (allergies, mold, dust) or my circulation, or both:)
- Contemplating Low Intensity Shockwave Therapy (e.g. Gainswave), which intentionally causes micro-trauma, supposedly leading to neovascularization and widening of blood vessels. As a Thal, any reason NOT to try this? I've not seen any negative side effects in my research!
I should mention I've been a happy vegan for almost two years, and supplement B12/D3/Omega-3/MG. The only thing that spiked up between my two last blood tests is Bilirubin (0.9 -> 2.2). Total Testosterone has been high @ 7.8 - 8.2 (plan on testing Free Testosterone next). All Thyroid tests normal. I'm adding Taurine, and will add Vitamin E to the mix after seeing Andy's posts on the subject.
Would love to hear other people's thoughts.
Cheers!
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L-carnitine or L-arginine both help to fix nitric oxide which helps with vasodilation, which increases blood flow, similar to what Viagra does, but not as strong an effect, so daily supplementation is required. Viagra was developed to increase the blood flow in patients with pulmonary hypertension, PHT where the pulmonary artery loses elasticity and becomes less flexible, causing stress on the heart and eventual heart failure. The side effect of Viagra got it marketed as a sexual dysfunction aid, but it is also used for its original purpose, treating PHT, which is common in thal intermedia and often found in majors, as well, and does seen to have some effects on thal minors as they age. Long term supplements to help keep the blood vessels flexible is something I recommend.
Vitamin B-6 can also help with sexual function, although some people are bothered by the harmless flushing that B-6 can cause.
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Hey Andy, glad to see you. When taking L-Citrulline, I saw no noticeable effects on ED. The one thing that did help, interestingly, was Pycnogenol (French Pine Bark). A few questions:
- which supplements to keep blood vessels flexible?
- what is your take on the recent discovery of the link between L-Carnitine supplementation and TMAO? (e.g: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6047224/). I'm wary of taking it for this reason.
- re: PHT, i've been having mild dyspnea (non exercise induced) for about a month. Can play basketball for hours, though. Got a pulmonary function test, shows normal. Regular blood pressure is 120/80. Should I do specific tests for PHT? After all, if my penile arteries may have lost their elasticity, so can my pulmonary artery? What are your thoughts here?
- lastly, thoughts on shockwave therapy for ED? It releases lots of NO and is said to cause neovascularization. Seems like a good match, no?
Cheers!
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L-carnitine, arginine and citrulline help keep blood vessels more flexible, as do nitric oxide inducing foods. Natural vitamin E and vitamin C also play important roles in the health of the circulatory system.
Regarding the assertions about TMAO, see this link. https://www.sciencedirect.com/science/article/pii/S0899900717301685
On the contrary, a number of studies have shown protective functions of TMAO, such as stabilization of proteins and protection of cells from osmotic and hydrostatic stresses. Finally, it is possible that TMAO is neither a causative nor a protecting factor, but may be merely a marker of disrupted homeostasis. Blood TMAO level depends on numerous factors including diet, gut microbiota composition and activity, permeability of the gut–blood barrier, activity of liver enzymes, and the rate of methylamines excretion. Therefore, the usefulness of TMAO as a specific biomarker in lifestyle diseases seems questionable. Here, we review research showing both physiological and pathophysiological actions of TMAO, as well as limitations of using TMAO as a biomarker.
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Just found this study, which showed that non-transfusion-dependent thal carriers (i.e. minors and some intermedias) have about a 5x higher chance of developing ED vs non-carriers. They believe it's caused by "the pathophysiological mechanisms of anemia and chronic hemolysis".
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4554026/
@Andy what do you think about the study? My current supplementation regimen is: Vit-B, C, D, E, Zinc, L-Arg, MG, Wheatgrass. Am I missing anything important for men's & overall health?
Cheers!
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A recent study with β-thalassemic mice showed a decrease in NO bioavailability in vascular endothelial cells and impairment in preserved smooth muscle cell reactivity to NO. In addition, Butthep et al found vascular endothelial cell injury/dysfunction in patients with α- and β-thalassemia and a relative decrease in protein C and S levels but an increased plasma thrombomodulin circulation of endothelial cells, vascular endothelial growth factor concentration, and tumor necrosis factor-alpha in circulation.
I have talked about the above issues in thal minors for years. Everyone wants to ignore minors and give them a good dose of blah blah blah, but the imbalance of alpha and beta globin chains exists in minors, too and causes most of the problems they experience. NO depletion and low levels of NO, and the effects of the unmatched alpha globin chains and the tetramers that those chains form, cause all sorts of problems in minors, including ED, numbness and tingling in the extremities, and overall bad circulation.
Have I asked you if you've ever tried Viagra? If that helped, then the increasing NO levels approach should be considered.
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What doses of L-Citrulline / L-Arginine did you find effective? I am starting with these at 1500mg (citrulline) and 1000mg (arginine), both twice a day ... thoughts?
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I met a many who claims taking Viagra-like-drugs caused him to have a heart attack. So be careful with these drugs.
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Many bodybuilders use very high amounts of these supplements, as much as 30,000 mg daily. Doses like that may be risky. Doses of 1000-3000 mg, depending on one's body weight, would pose no risk.
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I met a man who claims taking Viagra-like-drugs caused him to have a heart attack. So be careful with these drugs.
This man was lucky to be in a place where he was resuscitated. If he was not, he would not be here to tell the story.
Many bodybuilders use very high amounts of these supplements, as much as 30,000 mg daily. Doses like that may be risky. Doses of 1000-3000 mg, depending on one's body weight, would pose no risk.
I think it depends on the condition of the heart to start with. With someone whose heart is not in top condition, who may have a heart attack in a number of years time, taking Viagra like drugs may trigger a heart attack earlier.
It is not something I would want to risk. With some of us, maybe our heart is not in as good a condition as we think it is.
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The large doses some people take may not be safe. A normal dose would not be an issue.