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Thalassemia Major / High Heart Rate
« Last post by whiterose on June 01, 2023, 09:16:42 AM »
I hope everyone is doing good.
I'm Beta thalassemia, on regular blood transfusion. Mother of 6yr child. Working professional. moderate activity level, Tired. Gallbladder removed.

I have been feeling very high palpitations. Heart rate is always above 90. Sometimes it crosses 120-130 range.
Is it a bad thing, i mean i dont know the reasons of this.  Requesting some suggestions. 

All thals friends have these issues ? What's your heart rate during normal times & pre-post transfusion ?

Thalassemia Minor / Alpha Minor and Oxidative Drugs/
« Last post by himynameishuman on May 23, 2023, 04:50:51 PM »
Apologies if this has been answered already. Do Alpha minors need to be concerned with consuming oxidative drugs or food? Will it cause hemolysis?
any new updates ? Please share the information about gene therapy in India also.
Working Towards a Cure / Re: Gene Therapy Receives Approval in Europe.
« Last post by whiterose on May 16, 2023, 04:33:07 AM »
Hello Everyone,

Is there any new update regarding Gene therapy in Asian markets ? Cost ?

Hello everyone. My name is Ricardo and my son Gabriel has Thalassemia Intermedia. We live in Brazil. Gabriel's 17 years old and will finish High School this year. He wants togo to Australia next year for one year undergraduate student program. We are looking for health insurance plan that covers pre existing conditions in order to he can continue his treatment there, but we are facing difficulties to find such coverage. Has anyone faced the same problem? Any suggestion? Thank you so much.
Thalassemia Major / Re: Luspatercept ??
« Last post by whiterose on May 15, 2023, 06:57:20 AM »
Hello Everyone,

I think ROJUZDA is being used in Indian community . Requesting some reviews whoever is using it. What are the side effects, transfusion frequency after injections, cost ,availability , precautions ?

Thank you for this post and sharing your research.

One question on IRON. You mentioned iron levels should be monitored. Is that true for Thal Minor also or for Thal Majors ? Do Thal Minor need to be careful about iron-containing foods ?
This post by Andy is a good reference to compensate for the specific nutritional needs in thalassemia minor.,4890.msg46774.html#msg46774

From the investigation that I did on my own, I would like to comment on a few things.
If I'm wrong about something, I'm happy to be pointed out. My intention is to learn.



Obviously the iron level (ferritin and sideremia I think) should be monitored in laboratory tests. This is important to know whether OR NOT one should avoid foods with higher iron content.
It seems not, but some foods such as curcuma longa, sunflower seeds or lentils have a lot of iron, and in thalassemia it's absorbed very efficiently, in a bad way.
Of course you have to be very careful with multivitamins that contain iron (the majority).


GLUTATHIONE (important endogenous antioxidant enzyme)

I read studies that indicate that glutathione is somewhat reduced in thalassemia minor.
In theory, the most effective, cheap and proven supplement to increase glutathione is NAC (N-acetylcysteine).
Combining NAC, zinc, selenium and vitamin C, you can probably normalize that glutione level easily.
Quality protein supplements also increase glutathione.

As for glutathione, there should be no problem.



I have also read studies that the amino acid carnitine level is reduced between 30 and 40%. The percentage may vary depending on the study.

This seems serious to me. Carnitine is critical for the transport of fatty acids into the mitochondria to convert into energy.
Deficiency can give symptoms such as dizziness, muscle weakness, tiredness, etc.
I don't understand what is the reason why the carnitine is reduced. Some theories indicate that perhaps carnitine binds to excess iron in the blood to form less toxic compounds. That is, the body sacrifices its useful carnitine to protect itself from the toxic effects of the free iron released in blood. It's just a theory.

Fortunately, this is easy and cheap to treat with carnitine supplements. I think the best is in the form of L-acetyl carnitine, although L-carnitine tartrate will also work.



I have also read studies showing that nitric oxide is reduced in thalassemia minor. Or rather: it is alarmingly reduced.

In theory, this reduction in nitric oxide can cause poor vasodilation, endothelial weakness, collagen reduction, less physical resistance, heart problems, hypertension, and specifically pulmonary hypertension.
I think the paleness is mostly due to lower hemoglobin, but low nitric oxide may also explain, to a lesser extent, the pale, dull-skinned, slightly haggard appearance.

In this case, the reason for the nitric oxide deficiency seems to be mainly due to a lower level of the amino acid arginine in thalassemia minor.
The cause of less arginine does seem to be clearer than the mysterious carnitine deficiency. When red blood cells rupture, which happens more frequently in thalassemia, they release the enzyme arginase, among other components such as toxic iron. By the way, red blood cells contain a lot of arginase as is already known. This arginase enzyme converts arginine to ornithine, preventing arginine from being converted to the necessary nitric oxide.
In theory, the correct treatment could be an arginase inhibitor. But there is nothing cheap and reliable, only experimental stuff.

So the alternative treatment is to increase the level of nitric oxide by other means. Here is a list of substances that increase nitric oxide sorted by power:
Nitroglycerine, Nitrite, L-arginine, Citrulline, Sildenafil, Resveratrol, Pycnogenol, Vinpocetin, Vitamin C, Cinnamon

Personally, the most effective and cheapest way is to me a combination of L-arginine supplementation, increased arginine-rich foods, vitamin C (protects endothelium and reduces consumption of NO) and maybe a little cinnamon (stimulates the NO synthesis). And resveratrol or pycnogenol if you are richer. Indeed, any potent antioxidant reduces consumption of NO (like astaxanthin, but it's experimental stuff).

List of foods rich in arginine


There is also the matter of fetal hemoglobin stimulants like resveratrol and others. But I will not go into that so experimental topic.
Thalassemia Minor / Re: Supplements for thal minor
« Last post by VB on April 26, 2023, 09:47:57 PM »
hi Andy,

Kindly suggest on my post. We are really hoping for our son to put on more height and weight.

Thalassemia Minor / Re: Iron-rich foods for thal minor
« Last post by VB on April 26, 2023, 09:46:55 PM »
hi Andy,

Hope you are well. Please suggest on my post. We are really hoping for our son to put on more weight and grow.

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