Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: Lokkhi maa on July 08, 2017, 11:44:56 AM
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Dear Andy,
Last two weeks I have been suffering serious joint pain specially in hand,leg and backbone. All muscles are as hard like stone.. Now I am feeling its impossible to walk 2 steps.Feel severe pain.Though I am Thal minor it was unknown before my pregnancy and I never taking any supplements without pregnancy time.Now I am taking folic acid 5mg.Last month my HB was 6.9.
What to do?
I want to avoid transfusion.Please suggest me about Vit E,Vit D and B-12 dose...
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How low is your Hb? This sounds like problems caused by low Hb.
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Last month hb was 6.9...
But why now my hb is low? Earlier I have not such problem.
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Low Hb often causes pain in us thal majors too. The bones feels as if they will break and are brittle. Try supplementing with iron rich fruits and vegetables.
Also get your Vitamin D levels checked. I found having 40+ D levels definitely helps combat the pain. Earlier when I used to fall down, I'd crumble in pain. Recently only I fell twice and I didn't feel anything.
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Thanks Pratik...
Always headache also related with low HB?
I am thal Minor and always feel tired but not this much what I have suffering last two weeks.
Why my HB suddenly drop this way? Now I am daily taking 65mg Iron supplements.
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I would recommend rather to take a good vitamin B complex with high folate than iron.
Or, if necessary, at least combine them...
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Lokkhi,
Yes, all of the symptoms, including headache are related to the low Hb. One more thing you can try if you can get it is L-carnitine. An article I just found this week reported that high doses of L-carnitine, a common supplement, significantly reduced the transfusion requirements of thal majors. If you can find it, try 2000 mg daily. If you can't get your Hb to rise, you will need transfusion.
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Thanks to all..
Will L-carnitine increase the hb level?Is it safe for children?
Specially who are recommended for L-carnitine?
I found the below link of L-carnitine in Bangladesh..
http://www.bddrugs.com/product5.php?idn=127
I would recommend rather to take a good vitamin B complex with high folate than iron.
Or, if necessary, at least combine them...
Please advice about the dose of Vitamin B complex and folic acid..
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L-carnitine can help raise the Hb. Continue anything like wheatgrass and magnesium that you may already be taking. B12 is also helpful.
You should be taking 2-5 mg folate daily. B Complex is sold as one tablet that includes many B vitamins. Please take additional folate beyond what is in a B complex tablet.
I can't really comment on specific brands without seeing the ingredients.
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Yes, headache is definitely one of the symptoms of low hb. Wheatgrass really helps, especially in thal minors since you don't have to work as much as thal majors to push the hb and can easily help in raising the levels. Spinach and other green leafy vegetables are another excellent sources of iron rich foods.
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Levocarnitine
Tablet: Each tablet contains Levocarnitine USP 330 mg.
Dear Andy, pls advice against the above supplement for L-carnitine..
Dear Pratik, yes Spinach is a very rich source for iron but its available in Bangladesh only 3 months :sadyup :sadyup
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Yes, that's L-carnitine. You want to take 1000 mg daily, so 3 tabs.
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Thank you so much Andy.
I will start it from today..
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Did you check uric acid levels?
I am one such beta thal patient who has high levels of uric acid since last 3 years and recently the levels are 9.3 to 10.0. My Hb has now reached 10.6.
I have quite a lot of pain on wrist joints, ankle joints and all finger joints. The pain lasts for the first 3 hrs from the morning wake up. Daily morning same symptoms.
Vitamin D3, Calcium and Uric acid levels should be checked. Hb must remain well above 10.5 and for better it should be 11.0.
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Did you check uric acid levels?
This definitely could be the cause. Please check your uric acid levels and let us know.
High uric acid levels cause crystals to form in joints all over the body causing gouty arthritis.
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Thanks to all..
I did not check my uric acid level.Now I am daily taking Folic acid ,Vitamin B complex and Iron supplement.
Last 2/3 weeks I am quite pain free..Next Friday I will check my HB.
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My advice would be to check the levels in your blood of all the supplementations you are about to start first especially your Iron levels.
Haemoglobin is a key component however this can be influenced by multi factors such as inflammation or an internal infection or even both.
You should also check your uric acid levels.
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L-carnitine can help raise the Hb. Continue anything like wheatgrass and magnesium that you may already be taking. B12 is also helpful.
You should be taking 2-5 mg folate daily. B Complex is sold as one tablet that includes many B vitamins. Please take additional folate beyond what is in a B complex tablet.
I can't really comment on specific brands without seeing the ingredients.
One one of the drug website www.1mg.com in India I read the following:
Side effects of Levo-carnitine:
Nausea, Palpitations, Paresthesia (tingling or pricking sensation), Peripheral edema, Gastrointestinal discomfort, Anemia, Muscle pain, Bone pain, Bronchitis, Cough, Diarrhoea, Gastritis, Headache, Increased calcium level in blood, Increased blood pressure, Muscle weakness, Tachycardia, Vertigo, Vomiting.
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I can't imagine how much L-carnitine one would have to consume to get those side effects. Some bodybuilders have taken doses exceeding 30 grams daily. Perhaps that would cause it.
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I can't imagine how much L-carnitine one would have to consume to get those side effects. Some bodybuilders have taken doses exceeding 30 grams daily. Perhaps that would cause it.
What surprises is that Anemia is listed as one of side effects of L-Carnitine?
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Whereas I can find hundreds of sources that talk about using L-carnitine to raise Hb, I can't find a single source showing it causes anemia.
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L-carnitine workable for thal intermedia and thal major patients?
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Yes, it is a very important supplement for intermedia and major thals. It can help to prevent pulmonary hypertension, which afflicts thals at an older age.