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Thalassemia Patients and Friends and thalpal © A. Battaglia 2018

55028 Posts in 5854 Topics by 6115 Members
Latest Member: Marcus

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 on: Yesterday at 04:06:48 PM 
Started by slay - Last post by slay
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?


 on: May 21, 2019, 12:58:41 PM 
Started by jazzmehar - Last post by jazzmehar
Hi Andy
Just one update we went to meet pediatrician for follow up after the diarrhea episode and there we discussed about the electrophorosus report as well and doctor suggested to read the entire report where it is written that there is no abnormal hemoglobin detected. Iam attaching the report again.  And the doctor said that hba2 is in normal range and has suggested syrup ferium xt (iron plus folic acid) for 4 months to increase hemoglobin.
Please suggest..should we be relieved that he doesn't has thal minor and may be the low hb was due to his fever and general illness.

 on: May 21, 2019, 02:38:34 AM 
Started by jazzmehar - Last post by jazzmehar
Just one more thing i wanted to clarify Andy,  he was down with fever and dehydration when we got this blood sample.will this anyway change your interpretation of the report. Because hemoglobin can be low because of him being ill as well and rest of the values where within the range.
Please of you could shed some light.

 on: May 21, 2019, 01:56:23 AM 
Started by Tajefia - Last post by Tajefia
Thanks for taking your time answering Andy.

Btw, I might not have been clear about it but what I meant was that that I had done a blood test in 2017 that showed an HB of 12.2 just a couple months BEFORE the results in the first post and then I did a more extensive blood test a couple months later in 2017 getting the results in my first post showing a HB of 11.3.
Then I had more blood tests for other reasons done a few months later still in 2017 and felt awful, tired, weak etc for a good few months , halfway through 2018. Is there any chance that my HB sank even more, does HB sink doing blood tests?

I have been curious as to what level HB i have now, but the question is, do I dare take more blood tests? I have been refusing blood tests ever since! I have tried explaining that it is because of how I have felt in the past but my doctors think it is because I am scared of needles!

 on: May 20, 2019, 10:16:21 PM 
Started by jazzmehar - Last post by jazzmehar
Sir m bit worried with this news,  will it anyway affect his lifestyle and his aspirations to join Armed Forces. And we are in canada will we get treatment for this. He is playful as of now. Will he get tired easily?  Please help.

 on: May 20, 2019, 07:35:13 PM 
Started by tahirkhan - Last post by Andy Battaglia
Gene therapy uses a patient's own blood to insert good beta globin genes into the patient, where they can multiply and produce good red blood cells. The preparation is similar to that for a BMT, using chemo, and has all the same side effects, although this may change with new preparations being developed. There is no risk of graft vs host disease in gene therapy, as no foreign cells are introduced, so it is not the same as BMT afterwards. The cost looks like it will be very high, but once it gets to India, I imagine that will drop quite a bit. I have no idea about how long it will take, as it is not yet approved anywhere.

 on: May 20, 2019, 07:30:41 PM 
Started by jazzmehar - Last post by Andy Battaglia
It looks very much like thal minor. Low MCV, low Hb, HbF more than 1%. HbA2 at the high end. All point to thal minor. The hemoglobin is a bit low for minor. The patient would be advised to take folate and vitamin B-12 to try to help raise the Hb.

 on: May 20, 2019, 07:26:21 PM 
Started by Syeda - Last post by Andy Battaglia
It's pretty much the same as with Exjade. Most people get initial reactions, but it doesn't take the body long to get used to it.

 on: May 20, 2019, 07:25:17 PM 
Started by himynameishuman - Last post by Andy Battaglia
Yes, because they are examining a different chromosome and different genes, it requires specific testing for alpha. In addition, it takes different types of gene analysis to check for both alpha deletions and alpha mutations.

Molecular Genetic Testing Used in Alpha-Thalassemia

Genes 1   Test Method   Proportion of Pathogenic Variants 2 Detectable by This Method 3
HBA1 and HBA2   

Targeted common deletion analysis 4   ~85%
Sequence analysis 5, 6   ~15%
Deletion analysis 7   ≤5%

 on: May 20, 2019, 07:20:12 PM 
Started by slay - Last post by Andy Battaglia
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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