Functional b12 deficiency

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Functional b12 deficiency
« on: January 21, 2017, 09:38:47 PM »
Probably missing it, but did a search for functional b12 deficiency and didn't find it. Am wondering if other b thal minors have a functional deficiency (besides the mthfr complement) like the transcobalamin 2 deficiency? Most of my symptoms improved dramatically after a loading series of hydroxycobalamin injections. Had no improvement with sublingual/oral b12 supplementation, or a host of others including d, c, b complex, iron, etc. so wondering if transport Or malabsorption issues are associated with thal minor. If this has been discussed, could you refer me to the link. Thanks (my mutation is in the tcn2 gene)

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Offline Andy Battaglia

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Re: Functional b12 deficiency
« Reply #1 on: January 21, 2017, 10:08:07 PM »
Has pernicious anemia been ruled out? It's the more common cause of low B-12.

I don't have the link handy, but there was a study that showed thal minors do better when their B-12 level is near the high end of normal.
Andy

All we are saying is give thals a chance.

Re: Functional b12 deficiency
« Reply #2 on: March 15, 2017, 09:35:23 PM »
Hello Everyone, 

I am new here and not sure if I'm in the right place.  I thought my query was most suited to "Functional B12 Deficiency".  My name is Delinda and I live in Australia.  I am 47 and have beta thal minor, my 19 year old daughter also has it.  I have not had any problems with it aside from the usual fatigue that comes with mild anaemia. until recently, when I started losing a lot of hair and feeling really run down.  I had blood tests done.  Thyroid normal, iron levels normal (I also have the haemochromatosis gene - and my mum has both beta thal minor and haemochromatosis),  B12 normal.  Haemoglobin down to 93.  Doctor says hair loss is the result of increased anaemia and doesn't believe I need B12 supplementation.  I have also recently been following a plant based diet (6 months) and feel that my B12 supplement was not enough although this doesn't fully explain it because I know the liver stores years worth and it would take longer for a deficiency to show up.  Apparently my levels are normal for Australian standards but I still think they would be considered low elsewhere.  I will list my results below.
Haemoglobin 93g/l,
haematocrit 0.29,
rcc 4.5,
mcv 66fl,
 iron 15umol/L,
transferrin 1.8g/l,
tibc 45umol/L,
trans sat 33%,
ferritin 56 ug/L,
B12 281pmol/L,
Active B12 68,
folate serum 38
I have ordered methylcobalamin 1000mcg sublingual tabs as I have heard they are absorbed straight into the blood stream.  I also believe I will need to supplement the other B vitamins especially folate.  If anyone could throw some light on what level of b12 someone with thal minor should aim for, it would be most appreciated.

 Also, my daughter is suffering with IBS type symptoms, nausea, dizziness, lethargy, fatigue and no cause could apparently be found. Her haemoglobin is 111 and B12 is 190 down from 670 five years ago.  She had been on aropax for approx. 18 months (completely medication free for over a year now).  I believe that the medication may have depleted her stores and I think that surely she must be deficient.  Doctors say no, her levels are fine!! .  Do you think this could be the cause?

Thanks for reading.  I am very interested to know what others think

Delinda
 

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Offline Andy Battaglia

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Re: Functional b12 deficiency
« Reply #3 on: March 18, 2017, 12:30:45 AM »
It seems to be a common report among thal minors, that B-12 is in range or just below and the doctor says it's not the problem. If I come across the study again, I will post it again, but there is a study that showed thal minors do measurably better when their B-12 is near the high end of normal. So, instead of 200-300 being acceptable, 700-900 should be the goal. Folate may also be low and most people learn their vitamin D is low, as well, and again, the low end of normal is not sufficient for thal minors. A level of D over 50 should be the goal.
Andy

All we are saying is give thals a chance.

Re: Functional b12 deficiency
« Reply #4 on: March 18, 2017, 10:47:19 AM »
Thank you Andy, I was hoping that would be the case as it would explain a lot.  We will both get tested for Viamin D and in the meantime, we are supplementing B12, Folic Acid, Vitamin D.  Will keep you posted how we go.  This forum is very informative and I am learning a lot by reading through all the posts.

Thanks again
Delinda

 

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