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Abnormal CBC, but normal B12?

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56
Hi, I was hoping to get some help with making sense of my lab results, and figuring out which questions to ask my doctor at my follow-up appointment. I'm having a lot of muscle cramps.

Electrolytes are fine, including magnesium. CBC has been abnormal the last 3 times. Red blood cells and RDW% below range, MCV and MCH above range. Hemoglobin and hematocrit were low end of normal. MCHC was high end of normal.
Serum B12 was mid-range, serum folate was low-normal. Homocysteine and methylmalonic acid were mid-range.

What is causing RBC macrocytosis if B12, homocysteine, and methylmalonic acid are normal? The doctor has me supplementing methyl-B12, methyl-folate, and vitamin B1. Does anyone have a similar situation?
 
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56
Thanks! I'm going to ask about testing RBC folate.

Also, if I have labs drawn at my appointment, is it sufficient to just hold off on taking any supplements that morning? I don't want to have my results falsely skewed.

Edit: I just received the results from my vitamin B1 test - looks like I am deficient.
 
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Mary

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@datura - Your hospitalist is right. High MCV is generally an indication of macrocytic anemia, which can be caused by low folate and/or B12. Your folate result was "low-normal" so I think there's a good chance you may need more folate, especially in light of your MTHFR mutations so it's good your doctor has you taking this.

Your normal B12 level doesn't mean a lot to me. My levels are always quite high because I take a high dose of B12 - but it's common for people with ME/CFS to not be able to utilize B12 properly and thus often need quite high doses to actually get enough. And I don't think this is related to problems with intrinsic factor. I take 10,000 mcg liquid methylcobalamin (5000 mcg 2 x a day).

You didn't say anything about potassium levels. Low potassium can cause muscle calf spasms and cramps. It also causes spasms in my feet as well as calves, and can be a part of refeeding syndrome.

However - when starting to treat macrocytic anemia and taking B12 and folate, it is extremely common for potassium levels to tank, often quite badly, as cells start dividing more rapidly and doing what they need to do, which increases the need for potassium, which causes a deficiency. e.g., I got a noticeable boost in energy from methylfolate and then a day or 2 later got hit with severe fatigue due to my potassium dropping quickly. I had to titrate up to 1000 mg potassium a day and the severe fatigue went away. There are several threads on this board about the methylation protocol and potassium issues.

Also, people with ME/CFS tend to be low in intracellular potassium, despite normal blood work. Here 's a thread explaining this : http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422

A simple way to see if potassium would help you is to drink a few (I would try at least 3) glasses of low-sodium V8 which is high in potassium and see if you notice any improvement. I ended up having to supplement extra potassium every day. I currently take 800 mg potassium glycinate (in divided doses), 200 with each meal and 200 before bed. It's extremely common for me to get low potassium symptoms in the middle of the night.
 

Mary

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@datura - one more thing - when I started taking B1, it was great, gave me more energy and then a day or 2 later severe fatigue hit, but it was not low potassium this time, but rather low phosphorous. I started drinking kefir and eating sunflower seeds and my low phosphorous symptoms went away. I also took a low dose of monosodium phosphate, but don't need it any more. So you should watch out for this if you start taking B1.

So I've had several symptoms of refeeding syndrome, only I'm not anorexic - it has to do with ME/CFS.
 

Learner1

Senior Member
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In addition to the above, a methylmalonic acid test (MMA) is the gold standard for testing B12.

Serum B12 isn't very useful, and even so, yours is still low enough where neurological problems have been found.

You may also need to ensure your amino acids are normal.

And, though some folks have potassium issues, many of us don't. Enduring your electrolyte and other mineral levels are normal is a good goal. 70-80% of people tend to be magnesium deficient, so check RBC magnesium.
 
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56
Thanks, @Mary -- Would it be worth asking about a B12 injection? Would that increase the cells' ability to utilize the B12?
My potassium levels are fine, in lower-mid range. When I started taking Himalayan salt I noticed the cramping ease up a bit. Now, though, sodium is near the top of the range, and salt doesn't help the cramps.
Thanks for the tip regarding potassium -- I've been adding bananas and coconut water, but I don't notice a difference. I'll definitely keep consuming them daily to make sure I'm getting enough potassium.

I've read that lack of B1 can cause muscle cramps due to the build-up of lactic acid. When oxygen levels are low, lactic acid builds up. So the macrocytic anemia would be contributing, due to its influence on oxygen. It makes sense that my symptoms skyrocket during exertion involving my legs.

As a weird anecdote, I used to drink kombucha that contained lactic acid, and my symptoms got way worse (legs became like lead weights, severe joint pain, trouble with coordination when walking).

@Learner1, the methylmalonic acid test came back normal, mid-range -- I was confused by that, and expected it to be higher due to the macrocytosis.
 
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56
Also, I may ask about getting a B1 injection, since intestinal absorption is limited. I had wished the B1 test didn't take so long to come back.
 
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Eastman

Senior Member
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526
They gave me phosphorus right away, but my labwork showed that my phosphorus was already high to begin with... that's one thing that really baffled me.

How are your kidneys? They need to be in reasonably good condition to remove phosphorus.

Also, I may ask about getting a B1 injection, since intestinal absorption is limited. I had wished the B1 test didn't take so long to come back, so the deficiency could have been treated more promptly while I was still in the hospital. Should I ask my doctor about that?

You could ask about B1 injection but what form are you currently taking? The disulfide forms of B1 (allithiamine, sulbutiamine) are generally well-absorbed.
 
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How are your kidneys? They need to be in reasonably good condition to remove phosphorus.



You could ask about B1 injection but what form are you currently taking? The disulfide forms of B1 (allithiamine, sulbutiamine) are generally well-absorbed.

My kidneys are totally normal. The thiamine I'm taking is Nature's Way thiamine HCl, 100 mg. It says it's a precursor to the active metabolite thiamine diphosphate. I've been taking it three times a day.
 

Eastman

Senior Member
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526
Thiamine HCL is the regular form of thiamine so it is not well absorbed. The disulfide forms like allithiamine are much better.

Absorption, utilization and clinical effectiveness of allithiamines compared to water-soluble thiamines.
Oral administration of lipid-soluble allithiamines [thiamine propyl disulfide (TPD) and thiamine tetrahydrofurfuryl disulfide (TTHF)] rapidly increased thiamine activity in whole blood, red blood cells, cerebrospinal fluid, and urine in normal and thiamine-deficient subjects. These thiamine congeners also restored red blood cell transketolase to normal in alcoholics with thiamine deficiency. Such repletion equaled that produced by parenteral, water-soluble thiamine hydrochloride (THCl) or thiamine pyrophosphate (TPP). Oral administration of water-soluble thiamines (THCl, TPP) neither elevated thiamine activity in biological fluids nor restored transketolase activity to normal in alcoholics with thiamine deficiency presumably due to their rate-limited intestinal transport. Oral administration of TPD eliminated lateral rectus palsy in patients with Wernicke's encephalopathy. Orally administered allithiamine vitamers are therefore recommended for prophylaxis and treatment of thiamine deficits because while having essentially the same biological properties as parenterally administered water-soluble thiamines they have not produced any untoward effects after long-term administration and are far more efficiently utilized.
 
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CFS_for_19_years

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The hospitalist said my CBC pointed to macrocytic anemia, not iron-deficiency since the blood cells are big in my case. However, B12, homocysteine, and methylmalonic acid are normal. What should we be testing next? The doctor has me supplementing methyl-B12, methyl-folate, and vitamin B1
Also, if I have labs drawn at my appointment, is it sufficient to just hold off on taking any supplements that morning? I don't want to have my results falsely skewed.
The fact that you are taking B12 will give a falsely elevated B12 result. It is possible to have multiple deficiencies (iron, B12 and folate), but an iron deficiency can be ruled out with tests for iron and ferritin. Next time you are tested for B12 and folate you could see what happens if you skip those supplements 10 days in advance of your tests.
https://www.mayomedicallaboratories.com/test-catalog/Clinical and Interpretive/9154
See link above for more information.
Patients taking vitamin B12 supplementation may have misleading results.

Recent vitamin B12 administration could result in normal or elevated serum concentrations; therefore, this test should not be ordered on patients who have received a vitamin B12 injection within the past 2 weeks.

http://www.b12-vitamin.com/blood-levels/
Vitamin B12 Blood Test: Think About Timing!
A very common cause of a high B12 blood level is that the blood test is carried out directly after a vitamin B12 injection. This should be avoided and a grace period of 7 – 10 days should be observed, or else the results can be very misleading: the vitamin B12 hasn’t been metabolized yet and the high blood levels are simply a result of the injections. In these cases, high B12 blood levels are absolutely harmless.

Taking high dosage oral supplements can also starkly increase blood levels. In these cases, the same grace period should be observed.

Should high blood levels occur during a course of vitamin B12, then a first measurement to test new B12 blood levels should be taken 10 days after stopping supplementation.
 
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56
Thanks for the info -- I will try to see if I can get parenteral B1. I haven't drank kombucha in several months due to my adverse reaction. I don't think the doctor will re-test B12 serum this time, but hoping she'll do another CBC.

I was reading that high-dose B1 can deplete B2. Is that true? Lack of B2 can worsen anemia, and eye problems, which I have. My appointment is tomorrow. If she tests B2, the turnaround is at least a week, so it might not be a bad idea to start supplementing right after the test?
 

Mary

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Hi @datura - regarding the B12 injection, I I have read and also have experienced that sublingual methylcobalamin is just as effective if not more effective than the injections. I did injections for several years and never noticed a difference, I probably was not doing a high enough dose. I currently take liquid sublingual methylcobalamin, 5000 micrograms, twice a day and I can finally feel a difference with this. So the sublingual form bypasses your digestive tract which avoids problems absorbing through the digestive tract. The liquid form of B12 works better for me than sublingual tablets. I use Bluebonnet liquid methylcobalamin.

You're right about thiamine and lactic acid problems. I'm using an old tablet right now and I can't figure out how to copy a link, but if you Google "thiamine lactic acidosis" the first hit that comes up is an article about how B1 reversed lactic acidosis in 24 hours. And thiamine deficiency is linked to refeeding syndrome as you know. I don't know about B2, because I've never done well taking extra B2. But thiamine definitely increased my energy. For what it's worth, when I started taking thiamine it caused my phosphorus levels to drop as I described above.
 
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56
Hi @datura - regarding the B12 injection, I I have read and also have experienced that sublingual methylcobalamin is just as effective if not more effective than the injections. I did injections for several years and never noticed a difference, I probably was not doing a high enough dose. I currently take liquid sublingual methylcobalamin, 5000 micrograms, twice a day and I can finally feel a difference with this. So the sublingual form bypasses your digestive tract which avoids problems absorbing through the digestive tract. The liquid form of B12 works better for me than sublingual tablets. I use Bluebonnet liquid methylcobalamin.

You're right about thiamine and lactic acid problems. I'm using an old tablet right now and I can't figure out how to copy a link, but if you Google "thiamine lactic acidosis" the first hit that comes up is an article about how B1 reversed lactic acidosis in 24 hours. And thiamine deficiency is linked to refeeding syndrome as you know. I don't know about B2, because I've never done well taking extra B2. But thiamine definitely increased my energy. For what it's worth, when I started taking thiamine it caused my phosphorus levels to drop as I described above.

I'm using the Jarrow methyl-b12 lozenges, but I was just letting them dissolve halfway then chewing them. I wonder if those can be used sublingually, because it seems it would take forever for it to dissolve under the tongue!

The thiamine deficiency and lactic acidosis really fit my symptoms. The weird thing is, though, that I've been supplementing thiamine for one-and-a-half weeks, and my symptoms are only getting worse. Over the weekend I've been taking 100 mg before I eat anything with high carbohydrates or simple sugars. I've been trying not to eat a lot of simple sugars, but restriction really amps up the anorexic thoughts. Maybe I'm not absorbing the thiamine properly, on top of it being water-soluble. From the literature, it seems like reversing a thiamine deficiency requires IV supplementation short-term, then the patient can supplement orally. Even so, with the oral supplementation I would assume that I would feel at least marginally better, but I'm pretty incapacitated at this point.

Edit: And I'm not sure it's possible I have lactic acidosis, because my anion gap has been normal the last three times since starting refeeding. In lactic acidosis, it's typically significantly elevated.
 
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Mary

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I'm using the Jarrow methyl-b12 lozenges, but I was just letting them dissolve halfway then chewing them. I wonder if those can be used sublingually, because it seems it would take forever for it to dissolve under the tongue!

The thiamine deficiency and lactic acidosis really fit my symptoms. The weird thing is, though, that I've been supplementing thiamine for one-and-a-half weeks, and my symptoms are only getting worse. Over the weekend I've been taking 100 mg before I eat anything with high carbohydrates or simple sugars. I've been trying not to eat a lot of simple sugars, but restriction really amps up the anorexic thoughts. Maybe I'm not absorbing the thiamine properly, on top of it being water-soluble. From the literature, it seems like reversing a thiamine deficiency requires IV supplementation short-term, then the patient can supplement orally. Even so, with the oral supplementation I would assume that I would feel at least marginally better, but I'm pretty incapacitated at this point.

Edit: And I'm not sure it's possible I have lactic acidosis, because my anion gap has been normal the last three times since starting refeeding. In lactic acidosis, it's typically significantly elevated.

I've used Jarrow sublingual lozenges and I would get impatient and never wait long enough for them to dissolve and would end up chewing them too, which sort of defeats the whole purpose. Using them sublingually is letting them dissolve under the tongue. I really like the Bluebonnet liquid methylcobalamin. I just squirt it under my tongue and there's no need to wait 20 minutes. Somehow it gets absorbed quickly. I do it twice a day, after breakfast and dinner

I don't know about your thiamine issues. I'm not an expert. You might need an IV. You might try doing a separate thread specifically about your thiamine and potential B2 issues. Do you eat protein with each meal? If I ate a lot of sugar or simple carbs I would get in trouble pretty quickly. But I eat protein with each meal and if needed, protein in between (e..g, slice of cheese or nuts). On the whole I avoid sugar, though will have an apple a day I don't know if this would be of any benefit with your anorexic thoughts, but it would help stabilize blood sugar.
 

Mary

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@datura - It occurred to me that you still might have potential issues with low potassium. Excess lactic acid causes pain, a sort of burning feeling, in my legs, but it doesn't cause cramping for me. However, low potassium causes muscle spasms in my calves and feet, and sometimes cramping.

I know you said your blood work was okay on the potassium, but was this blood work done before you started treatment for macrocytic anemia? Starting to take B12 and folate when you are deficient can cause a rather sudden drop in potassium. So your potassium could have been okay before you started the B12 and folate, but then tanked after you started them. Folate gave me a very nice boost in energy for a day or 2 when I first started taking it, and then 2 days later I was hit with severe fatigue - low potassium, which occurred almost over night.

If you are dealing with low potassium, then your coconut water and bananas may not be enough. I have to take 1000 mg a day plus drink low-sodium V8. Several people on this board take more than me.

Potassium levels can change so quickly. THere are many many people on the board here who developed low potassium symptoms after starting B12 and folate.
 
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56
@Mary, I couldn't find the Bluebonnet liquid at the store, the only one had folic acid in it as well, so I got the Natural Factors quick-dissolve methylcobalamin. It dissolves super quickly under my tongue!

A couple weeks ago my potassium was normal. I've read that 98% of potassium is in the intracellular compartment, so I don't think I have a deficiency given my lab results. I'm guessing my potassium is normal now as well. I'm concerned about taking a potassium supplement because I don't want it to go too high. I don't notice any difference in symptoms even when I've had 2 coconut waters (60% of DV).
 
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Mary

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@datura - That's too bad your doctor can't help you with your refeeding concerns. I don't know what type of doctor would be best for that. It has occurred to me that doctors who specialize in anorexia might be very good for people with me/cfs because we have so many metabolic abnormalities and apparent problems with refeeding issues when we add in various supplements.

Re potassium: I'm assuming your potassium test measured potassium in the blood and not intracellularly. Most potassium tests measure potassium in the blood or sera. There is specialized testing which measures intracellular electrolytes: http://www.exatest.com/physicians.htm I had it done once to measure intracellular magnesium.

So assuming your blood potassium was 4.3, yes that's in the normal range, but it does not tell you what your intracellular potassium was. It is possible to have normal potassium levels in the blood and low intracellular potassium. If you look at the link I provided in the first post I did above, it explains how people with me/cfs tend to be low in intracellular potassium despite normal blood work. I don't know if you have me/cfs though I expect others might have similar issues.

I'm not suggesting you take a potassium supplement. But I think it's possible you may have low intracellular potassium, particularly since you've started taking folate and B12, which are notorious for causing potassium levels to drop because they increase the need for potassium. Many on the board (including me) need more than the RDA of 4500 mg of potassium. So your 2 coconut waters just may not be enough, which is why I suggest adding in some low-sodium V8 or low-sodium vegetable juice which is high in potassium and low in sugar (the low in sugar part is important for me) and see if it helps. I would drink 2 or 3 glasses, in addition to your coconut water. It is next to impossible, if not impossible, to get too much potassium in foods. Also, the RDA is the minimum amount of potassium necessary.

Here's one study which mentions this issue: https://www.ncbi.nlm.nih.gov/pubmed/3627537

Also check out this thread by user Freddd, who is extremely knowledgeable about methylation and folate and B12. He talks specifically about potassium and hypokalemia and methylcobalamin:
http://forums.phoenixrising.me/inde...es-to-healing-via-induced-deficiencies.41605/

If you did try the low-sodium V8 and saw an improvement, you might consider a potassium supplement. The 1000 mg I'm taking is less than 25% of the RDA. I titrated up to this dose over a couple of days, starting with around 400 mg in divided doses, until my symptoms abated. It is important not to take a large dose all at once.