Symptoms getting worse after supplements...

Yet I am feeling, if anything, worse. Sometimes I start falling asleep when I am standing up - my eyes just close and I start drifting out of consciousness. I also can't get out of bed in the morning because I feel too weak.

Folic acid, B12 and especially their methylated forms (methylfolate, methylcobalamin) may disturb (ie. increase) methylation processes. This may lead to increase in neurotransmitters, including those responsible for sleep, and thus sleepiness. In a similar matter (ie. because of disturbed methylation) this may cause weakness and inflammation. I confirmed this in my case using TMG - another methyl donor, which is not a vitamin but also increases methylation. After taking it I get very sleepy in the same way as with methylfolate. OK, so what can we do about it? Very slow tirtration of doses. Immediate relief - take 50 mg of niacin - it absorbs methyl groups and immediately stops these symptoms... but... prolonged use of niacin for this purpose caused me different side effects. So there is always something.

I am very sensitive to folate supplements and I don't know why... you may be too.

I also strongly recommend taking zinc and copper which are as necessary as iron. I should rather say: one should start with zinc and/or copper before iron to see if these help.

Two of many links:
http://www.chiro.org/nutrition/FULL/Zinc_Not_Iron.shtml
http://drlwilson.com/ARTICLES/ANEMIA.htm

I noticed an improved immune system since starting zinc and copper a few years ago. They should be taken together to prevent an imbalance that can happen if only one of them is taken.

Over and over I've been told that melon juice is good for an enlarged spleen, which would have to mean it slows hemolysis, which would mean less bilirubin and uric acid production. I've heard good things about Liv 52, as well. Natural takes time, but is the best long run approach.

Currently my ayurveda consultant has given me below ayurvedic syrup for better spleen function management:

https://www.allayurveda.com/shop/baidyanath-rohitakarishta-450-ml

My Morning breakfast ended with a bowl of watermelon and today's lunch ended with a bowl of muskmelon.
Its been 10 days with Liv-52-DS and I will continue this for 90 to 180 days(10ml twice).

Thanks for that post, there are several suggestions that that I have not come across and will investigate further. I am interested in ayurveda but not all the suggestions I was given when travelling in India seemed to be directly relevant to my condition. However, it looks as though you have sorted the wheat from the chaff in that respect. Glad things are working out for you with supplements.

Things are not so well after 18 September or so. Last 3 to 4 weeks have been hell.
All types of myalgia, angina pain, shortness of breath, low BP of 110/65 and what not.

An attempt to take Vitamin D3 injection of 600000 IU turned messy on 26 September when the liver could not sustain that oil based vitamin material. I had sharp screaming pain in my back just behind my heart. Doctors said it was nothing related to heart but gastritis caused my D3 injection. 600000 IU proved to be a high dose for a weak liver.

Overall weakness persists. If I go for B Complex, the niacin in that causes rise in uric acid causing joint pain.
A very bad viral fever from 28 September to 3 October almost grounded me to bed. The medicine for curing that put further strain on my red cell picture.

Have you ever reacted to an oral vitamin D product?

No Andy, I have never reacted to oral Vitamin D3 gel caps, tablets or the 1gm granules that I take.

First D3 injection given to me was Aug 2013 or so when my Vit D3 level was 5 or 6. It pained that time but no reaction.

Second D3 injection given to me was Sep 2017 when my Vit D3 level was 13. It did not pain that time but 48 hrs later I was in cardiac ICU due to severe pain just behind my heart in the back, darkness in front of eyes, palpitations and discomfort abdomen. Doctors then advised that poor liver was not able to accept the heavy D3 dose of 60,000 IU and hence causing severe gastritis leading to pain et al.

Doctors advised to go for oral 1gm granules weekly one sachet and put the D3 injection far away. Next inj should be taken maybe after 30-40 days and ensure Pantoprazole Domperidone is consumed for 7 days before and after the D3 injection.
But one episode of 28 September with severe pain behind heart puts me off for the D3 injections.

Maybe 60000 IU injection is too big a dose?

Maybe a small 5000 IU injection will not cause such pain behind heart?

Maybe you should stick to the oral D supplements. They do work and you can find doses that are 50-60,000 IU.

35 yrs ago  I could not walk across the room without  passing out.    my stomach was so swollen  that I looked pregnant   yet I was just skin and bones
my eyes teared  a lot even though I was not crying

one time I passed out in front of a clinic and the nurse there insisted I see a doctor  who was familiar with TMM   she had worked with doctors without borders her entire life and now volunteered one day a week

she said in past she prescribed 1cc of B12 injection once a month and gradually one a week.   Most of my symptoms disappeared within 4 months  40yrs later   I am still using the injection.   

has anyone else   tried this

I am regularly hearing from patients whose Hb has risen and overall health has improved greatly by taking B12.

I am regularly hearing from patients whose Hb has risen and overall health has improved greatly by taking B12.

Hello Andy mate, I was wondering what levels of vitamin B12 are considered adequate for someone with thalasemmia intermedia (hg7.2). My vitamin B12 levels currently run around 338-450 pg/mL and the blood test ranges on results seem to indicate 771 to be the maximum.

Cheers

Yes same question from me. What level would be ideal?
My B12 levels at intermedia stage after 8 months of weekly => then monthly shot stands 449 in September.

From Nov 2017 I started taking 1000mcg methylcobalamin 2ml shot instead of the 1ml 500mcg shot.

Studies have shown that thals do better when their B12 level is near the high end of normal. Even higher than normal  is suitable.