Thal newbie looking for some answers

Solved

Welcome, Anirudh.

Have you consulted an endocrinologist? He should be able to test and give you a few answers.

Testosterone levels can be boosted fairly easily, and without side-effects by taking HGH on a monthly basis - if your ED is linked to a falling testosterone level, then it is better corrected through this route, rather than ED drugs. Priapism can certainly be a potential issue for Thals taking Viagra.

Also, pls check for Serum Ferritin levels. Even moderately high levels of iron in the blood can affect your pituitary glands.

Hope you get it all sorted out.

Cheers

Poirot

I'm 30 year old and I've the same symptoms as Anirudh. I'm also Thal minor. I've been taking Cialis for 2-3 years now on-and-off without any issues.

I've met several doctors and none have mentioned about Priapism and Cialis connection. Maybe it is just lack of thal minor awareness. Does anyone have details on these pills causing Priapism in thal minors ? Do the drug manufacturers warn about this ?

I am looking into this, so please be patient. The only connection between thal and priapism I have found in the literature is in post splenectomy thal intermedias.

First, just to clarify. Priapism is warned about very clearly with these drugs, although the name is not usually used. Every ad has a warning about calling your doctor immediately if an erection lasts longer than 4 hours when using the drugs.

Priapism is known to occur in some thal intermedias after splenectomy. It is also found in sickle cell disease, but not known in sickle cell trait. It has also been found with Fabry disease and G6PD, both of which are x chromosome disorders. It may be that something other than thalassemia is responsible. It may also be that there is a connection but cases have not been reported. I think the first thing to do would be to test for G6PD to see if you are carriers. I did find mention of a treatment that showed a positive effect with thal intermedias. I do not know if this is readily available but it may be worth mentioning to your doctors. http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2009.01285.x/full

Oral Phosphodiesterase Type 5 Inhibitors Alleviate Recurrent Priapism Complicating Thalassemia Intermedia: A Case Report

There are no official warnings about combining either L-carnitine or vitamin E with Cialis. There are many anecdotal reports that L-carnitine boosts the effect of Cialis, but no warnings that I see about using the two together. Cialis is not a blood thinner, so I see no reason why vitamin E should be stopped if taking Cialis.
http://www.drugs.com/drug-interactions/cialis-with-l-carnitine-1454-13156-2144-1395.html

There were no interactions found in our database between L-Carnitine and Cialis

I do not consider weight training sites as medical sites, so I ignore the wrong advice given at these sites. Those were the only sites warning against using L-carnitine with Cialis.

Thanks Andy.

One more question - is it in the literature that thal minor is related to ED as well ? In general, testesterone is known to reduce after 25-30 yrs of age in men, so maybe it is just related to that. but does thal minor trait make this worse ?

ED is not associated with thal minor, but then again, almost none of the things thal minors suffer from are officially associated with thal minor, which remains asymptomatic according to most "authorities."

Priapism is associated with sickle cell disease, which is a disorder of the beta globin gene, just like beta thal is also caused by the beta globin gene. Although sickling is not present in most thals (with a specific type of Hemoglobin C being the exception), I would ask are there similarities that would duplicate the mechanics of sickle cell which cause priapism? My own take on this is yes, there may be some similarities between the effect of sickling in blood vessels and the "clutter" found in the blood of thalassemics. If this "clutter" builds in the blood vessels in the penis, could priapism be the result? This may be the first time this question has even been asked. Don't expect anyone to go out and research this, as the problems of thal minors are virtually ignored by medical research and doctors.

Appreciate the help Andy!

Looks like the only way to know for sure would be to try the drugs and see. However the fact that treatment of priapism is more complicated in the case of thalassemics further complicates matters  

On another note, a recent testosterone check indicates a rise in Total T in me, but a drastic reduction in Free T. Any idea why? Here are the results:

1st Test
Total T - 2.2ng/ml (Reference Range 1.8 - 9.0 ng/ml)
Free T - 9.2pg/ml (Reference Range 8.9 - 42.5 pg/ml)


2nd Test (2 Months later)
Total T - 3.9ng/ml (Reference Range 1.8 - 9.0 ng/ml)
Free T - 0.9pg/ml (Reference Range 8.9 - 42.5 pg/ml)

I didn't know if this was the appropriate place to ask this question. So pardon me if its not.

Anirudh, I'll answer one of your previous questions - how effective cialis was for me.

i've tried 5mg/10mg/20mg on different times. the results have been satisfactory on most occasions for me. there have been some occasions when it was not effective.

Tried V once, didn't work for me.

anirudh412,

What times of day were the two testosterone done? It makes a huge difference in young men.

anirudh412,

What times of day were the two testosterone done? It makes a huge difference in young men.

Good point! I forgot theres a diurnal variation in T Levels. But is this much normal? The first test was done in the evening, around 5 p.m whereas the second was in the afternoon around 11 am

Although sickling is not present in most thals (with a specific type of Hemoglobin C being the exception), I would ask are there similarities that would duplicate the mechanics of sickle cell which cause priapism? My own take on this is yes, there may be some similarities between the effect of sickling in blood vessels and the "clutter" found in the blood of thalassemics. If this "clutter" builds in the blood vessels in the penis, could priapism be the result? This may be the first time this question has even been asked. Don't expect anyone to go out and research this, as the problems of thal minors are virtually ignored by medical research and doctors.

Thanks, Andy, for the more detailed thinking out of this issue - "sickling" can be the cause of priapism in thal majors, for certain, in post-splenectomy cases.  That is the link that I was missing when I was researching out this issue, some years back. However, again, i would say that I use priapism in a broader sense here, rather than the clinical definition (>4 hours erection, with or without clinical intervention to make the erection subside).


How this links up with Thal Minor is not clear, but caution is certainly advised in using ED drugs, if you have a beta globulin disorder.


Cheers