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Miscellaneous Questions / Hemoglobin Fractionation
« Last post by adg1987 on Yesterday at 06:07:14 PM »
Can anyone interpret this? My mother has hemoglobin S and C. I asked them to test me but I’m unsure of if they did and it was negative or if it just wasn’t ordered. I asked the nurse but she didn’t know or care. I do believe there could be a family history of some type of thalassemia on my dads side. At this point i feel like i need to ask for genetic testing but I’d like opinions on what to request next. I might have something totally different going on but I’d appreciate any advice at all!
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Thalassemia Minor / Re: COVID-19 vaccine
« Last post by Slade on July 21, 2021, 08:58:23 PM »
With this delta wave approaching fast I'm considering a vaccine shot. However, I'm really anxious about those heart inflammation side effects.
The EMA investigated 145 cases of myocarditis and 138 cases of pericarditis in Europe after the Pfizer shot (per 177 million doses by 1st of June). Some cases were also reported after a Moderna shot.
This is from EMA website: "The Committee (PRAC) concluded that the cases primarily occurred within 14 days after vaccination, more often after the second dose and in younger adult men. In five cases that occurred in the EEA, people died. They were either of advanced age or had concomitant diseases. Available data suggest that the course of myocarditis and pericarditis following vaccination is similar to the typical course of these conditions, usually improving with rest or treatment."

Andy, how's your friend now? Is he better or worse?
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Thalassemia Minor / Re: COVID-19 vaccine
« Last post by Sheeta on July 16, 2021, 03:11:27 PM »
I'm a 34 yrs old, Beta Thal minor and took pfizer-1st jab. I did not have any side effects other than just a mild chill. Waiting for the 2nd jab.

Note: I frequently drink water boiled with Lemon Grass, Ginger, blackPepper, Coriander seeds and lemon with Honey.

So I feel its helping my body from other cold related symptoms..Hope it helps to others as well.
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Thalassemia Minor / Re: COVID-19 vaccine
« Last post by sturts desert pea on June 28, 2021, 03:30:56 PM »
Andy, So sorry to hear that..
I hope your friend get well soon 🙏
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Thalassemia Minor / Re: COVID-19 vaccine
« Last post by Andy Battaglia on June 27, 2021, 03:48:47 PM »
I have to report that a thal major friend of mine who is in his 30's has heart inflammation after taking the first Pfizer injection. A clear case of cause and effect in one who has never had any heart problems previously.

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Thalassemia Minor / Re: My quest to reduce ferritin
« Last post by Andy Battaglia on June 27, 2021, 03:46:21 PM »
I think the last one is quite unlikely, considering that the high ferritin has been present for some time.
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Thalassemia Minor / Re: My quest to reduce ferritin
« Last post by Slade on June 16, 2021, 10:08:16 PM »
Hi Andy,

Thanks a lot for these suggestions. I've investigated some of these potential causes but I haven't found anything yet.
I checked my thyroid function some 2y ago - all OK
My gastroenterologist ordered HCV and HBV tests and a DNA test for hereditary hemochromatosis - all came back negative. He then put me on alcohol free regime for 6 months, even though I'm not a heavy drinker but ferritin didn't budge...
I also suspected an infection or some low-grade inflammation but my WBC, CRP and ESR tests were normal.
I think I can rule out UTIs because I did several tests for bacteria in urine over the past few years and they always came back clean. My problem with high ferritin has been present for  many years now and I would think that if the culprit was something different than my thal condition it would have revealed itself by now... but who knows.. Maybe I should keep looking and hope that the actual cause is not something like the last line in your quotation..
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Miscellaneous Questions / Re: North Carolina Doctors and Treatment Center
« Last post by Andy Battaglia on June 14, 2021, 10:15:19 PM »
You could try calling the Cooley's Anemia Foundation and ask if they can direct you to thal familiar doctors in NC.
(212) 279-8090
info@thalassemia.org
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Thalassemia Intermedia / Re: My son with thalassemia intermedia help me
« Last post by Andy Battaglia on June 14, 2021, 10:05:27 PM »
The -101C>T mutation is indeed a silent mutation and the child should have the outcome of a thal minor, but more likely a minor with hemoglobin on the lower end of normal for a thal minor. The outcome will be determined by the IVS-I-1 G->A mutation, as that is a beta zero mutation.
Good nutrition is an important part of the program of thal minors, especially when the minor is a result of a beta zero mutation.
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Thalassemia Minor / Re: My quest to reduce ferritin
« Last post by Andy Battaglia on June 14, 2021, 09:29:35 PM »
Slade,
The other numbers don't show anything wrong with your iron. The ferritin is high for a reason other than too much iron. The lower TIBC level shows that your body is not trying to absorb more iron than needed.
Some possible explanations are discussed at https://www.newhealthadvisor.org/Causes-of-High-Ferritin.html
(Low grade urinary tract bacterial infections have often been reported and may be a common cause of higher ferritin).

Quote
2.   Causes Without Iron Overload
Hyperthyroidism: When your thyroid is not working properly, it can alter your ferritin levels. Hyperthyroidism is one of the causes of high ferritin. You will need to undergo thyroid function tests to make sure whether there are something wrong with your thyroid.

Liver disease: Liver disease is another cause of high ferritin, brought on by altered iron and glucose metabolism. If you are suffering a viral infection associated with hepatitis, you may suffer from elevated ferritin levels as well.

Alcohol excess: Heavy drinkers may experience increased iron stores which will lead to high ferritin levels.

Inflammatory conditions: The high ferritin level is often the reflection of inflammatory conditions such as rheumatoid arthritis. Therefore, if you are suffering from high ferritin level, consider it as a possible cause.

Bacteria infections: When you have an infection, your body will start stockpiling iron to ferritin to prevent the bacteria from using iron. In this case, you also will have a high ferritin level.

Malignancy: High ferritin levels can be an indication of cancer related with blood.
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