New here, B12 test results confusing. Not absorbing?

[Stacy2012]

Hi!

I have spent days, hours, weeks, reading here and other places, as many of us do, searching for answers. I am finally ready to post, in hopes of getting some opinions from some of you.

To make a long story short, I have neuropothy symptoms in my feet, burning toes and tingle, that is sometimes very painful. Heel pain horrid. Right back of heal has a numb spot about a quarter in size. These symptoms sent me to my dr, with fear of diabetes and/or diabetic neuropothy. The dr did a blood test, lots of results but the hightlighted result was a TSH of 10.3

She refused to prescribe desicated natural hormone so I went to another doctor. She said neuropothy symptoms was from thyroid.

Next dr ran more blood test on theyroid with result of T4 Total 10.7 and T3 Free 3.66 and T4 Free was 1.26

He agree to prescribe nature throid desicated hormone. Had nothing to say about neuropothy in my feet.

So I am doing my own research, led me to B12. I went to a lab and ordered my own lab test on B12 serum and blood MMA. They did not offer the active B12 test that I wanted so this was my only options.

My Results:
B12 Blood serum >3000 HIGH pg/mL Range: 193-982
MMA <0.08 LOW end of normal nmol/mL Range <0.40

So my own opinion, this means I have lots of B12 but I am not absorbing???? Since the serum is so high but the MMA is so low??

Oh, I had NEVER supplemented with B12 prior to the test. Only a cheap walmart Bcomplex one a day, which had very little B12 in it.

Any opinions???

Im not sure what to do next....figure out why/if I am not absorbing B12 or what?

thank you for any opinion.

 

[richvank]

Hi, Stacy.

Your high TSH with the more normal values for the other thyroid hormones suggests that you have primary hypothyroidism.

Your high serum B12 in the absence of prior supplementation suggests that you have a functional B12 deficiency.
The neurological symptoms you reported could be due to a B12 problem, and that would be consistent.

Your low MMA is puzzling. It suggests that your cells have enough adenosylcobalamin, one of the two coenzyme forms of B12, which would say that if you have a functional B12 deficiency, it does not involve adenosylcobalamin production, only methylcobalamin. There are inborn errors of metabolism that can cause this result, but this marker can be misleading if there are deficiencies in B2, B6, biotin, or some of the amino acids.

Would you be willing to answer some questions?

1. How old are you and how long have you had these symptoms?

2. Do you have other symptoms also, such as those characteristic of ME/CFS?

3. Do you know whether any of your genetic relatives have (or had) B12-related issues?

4. Has your diet been high in animal-based protein?

5. Have you supplemented anything other than B12?

6. Do you have symptoms associated with your digestive system? If so, what?

Best regards,

Rich

 

[Stacy2012]

Thank you for your reply!

Yes, I will answer questions and ask a few more, haha!

primary hypothyroidism?? Can you explain? I have not gone back to my dr since getting results of thyroid Free T3 and T4 so I have not figured out yet why TSH is so bad yet rest is normal. (i go back in 2 weeks to see him)

So do you think Im simply not absorbing B12? I have started on Jarrow and Enzymatic Therepy both 1 mg but I started them AFTER taking the blood test last week since I was so sure i was low B12. I take 1 jarrow and 2 ET a day.

ok Answers to your questions:

1. I am 46 and have realized I have had hypo thyroid symptoms for years, not realizing it. Tired ALL the time. overweight. Joint pain and much more, but I have blamed everything on myself, saying I must be lazy, or whatever. Its been 15 years for some of these symptoms that I just thought was from gaining weight. (i would lose and gain weight throught the years )

2. Not sure need to go back and read what those symptoms are again, im on information overload and all is running together.

3. My mom said her mom got B12 shots all the time.

4. Yes, I love meat, eat too much. Even did Atkins diet for awhile.

5. Supplement many things through the years off and on. Nothing serious until this neuropothy started as it scared me the most. Neuropothy symtoms got the worse in the last 6 monts and now pain is bad, fire is bad, numb spot hurts.

6. Digestive has always been ok except for acid reflux which I control mostly with Braggs Apple Cider Vinegar water and baking soda. Periodically zantac and tums.

Thank you Rich!

 

[Stacy2012]

I guess I didnt really answer the question about supplements right. :/

I have taken alot of supplements off and on so Ill just say what I am on right now:

B12
Calcium
Potassium
Magnsium

My potassium was in the normal range on blood test.

Also take Braggs ACV with baking soda in water for acid reflux. Occasionally tums and/or zantac

Also on Blood pressure medicine, just the water pill hydrochorthyoxide.

 

[richvank]

***Hi, Stacy.​

Thank you for your reply!​

***You're welcome.​

Yes, I will answer questions and ask a few more, haha!​

***O.K.​

primary hypothyroidism?? Can you explain? I have not gone back to my dr since getting results of thyroid Free T3 and T4 so I have not figured out yet why TSH is so bad yet rest is normal. (i go back in 2 weeks to see him)​

***Primary hypothyroidism means that the thyroid gland itself is not functioning normally, so the pituitary gland has raised its output of TSH in order to stimulate the thyroid gland to increase output of the other thyroid hormone. So far this is working, but usually it gets worse over time. The most common cause is Hashimoto's autoimmune thyroiditis. This is very common in ME/CFS.​

So do you think Im simply not absorbing B12? I have started on Jarrow and Enzymatic Therepy both 1 mg but I started them AFTER taking the blood test last week since I was so sure i was low B12. I take 1 jarrow and 2 ET a day.​

***I'm still not sure what's going on in your case. The low MMA has me puzzled. I think you may have to do some more testing. I would suggest running the methylation pathways panel from the Health Diagnostics and Research Institute. Contact info is in the section of this forum that contains my documents. Toward the end of that section is the contact info for this panel, an interpretive guide to the panel, and finally the simplified protocol to use if the panel shows a methylation partial block.​

ok Answers to your questions:

1. I am 46 and have realized I have had hypo thyroid symptoms for years, not realizing it. Tired ALL the time. overweight. Joint pain and much more, but I have blamed everything on myself, saying I must be lazy, or whatever. Its been 15 years for some of these symptoms that I just thought was from gaining weight. (i would lose and gain weight throught the years )​

***I think it's possible that you have ME/CFS. Being tired all the time, gaining weight, having a B12 functional deficiency, having hypothyroidism, having neuro symptoms, and having low stomach acid are all common in ME/CFS. (Note that low stomach acid can cause reflux.) Being healthy until about age 30 is also common in ME/CFS.​

2. Not sure need to go back and read what those symptoms are again, im on information overload and all is running together.​

***O.K. I just wrote about that.​

3. My mom said her mom got B12 shots all the time.​

***That sounds more like inability to absorb B12 and put it into the blood. That's common as people get older.

4. Yes, I love meat, eat too much. Even did Atkins diet for awhile.​

***That would account for getting a lot of B12.

5. Supplement many things through the years off and on. Nothing serious until this neuropothy started as it scared me the most. Neuropothy symtoms got the worse in the last 6 monts and now pain is bad, fire is bad, numb spot hurts.​

***Definitely need to figure it out.​

6. Digestive has always been ok except for acid reflux which I control mostly with Braggs Apple Cider Vinegar water and baking soda. Periodically zantac and tums.​

***Could be due to low stomach acid production. You can check that with a do-it-yourself test: First think in the morning, on an empty stomach, drink a glass of water into which you have mixed one-quarter teaspoon of baking soda. Time how long it takes you to burp. If you haven't burped withing two minutes, you have low stomach acid. This is common in ME/CFS. People use betaine HCl or dilute hydrochloric acid (from Allergy Research Group) to supply acid until the ME/CFS can be corrected.​

Thank you Rich!​

***You're welcome. Sorry I can't give you a final answer about what's going on. Need more data.​

***Best regards,​

***Rich

 

[Stacy2012]

oh my.

Well I guess I need to read about this ME/CFS more. I just keep finding new turns to this, the more I read the more confused it gets, but as I see, the road to any health recovery is long and primarily our own responsability.

I can say yes to the burping after baking soda question already. I burp like crazy immediately after the ACV and sometimes I do 1 tsp of baking soda alone when its real bad and I burp like crazy right after I take it.

I remember reading about Hashimoto's autoimmune thyroiditis but I didn't think it pertained to me, so I guess I need to read more again.

I wonder if the Nature Throid Im taking will help my situation. I just started it 2 weeks ago.

Thank you for taking the time to offer your help!! I will keep reading, and searching for answers.

 

[Stacy2012]

Should I stop taking the B12????

I dunno what to do about the B12 situation now, since I have too much, 3000 is off the charts, so I guess I should stop taking it.

 

[richvank]

Hi, Stacy.

If you would be interested in watching my video about ME/CFS, you can find it here:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/

To get the slides, click on the blue print below the video.

This video covers a general introduction to ME/CFS, describes the GD-MCB hypothesis, and discusses treatment and results of treatment.

Maybe you can compare your symptoms to what is described in the video and see how well they seem to match.

Best regards,

Rich

 

[richvank]

Should I stop taking the B12????

I dunno what to do about the B12 situation now, since I have too much, 3000 is off the charts, so I guess I should stop taking it.

Hi, Stacy.

Not necessarily. The serum B12 measurement is dominated by B12 that is bound to haptocorrin. This part of the serum B12 has been rejected from the cells and is not accessible to the cells in general, only to the liver cells. This part stays in the blood for about a week before the liver picks it up, and that's why it can rise so high if the cells are rejecting B12 because they have a functional B12 deficiency.

In order to overcome a functional B12 deficiency, you have to put a higher dosage of B12 into the blood. Some will be bound to transcobalamin and will enter the cells in the normal way. Using a high dosage (at the milligrams level, sublingually or by injection) will put enough into the cells to overcome the functional B12 deficiency.

In addition to the B12, if there is a functional B12 deficiency and a partial block in the methyation cycle, it is also necessary to take oral methylfolate at about 400 to 800 micrograms per day. If there are deficiencies in other essential nutrients, they will need to be supplemented, also.

I prefer seeing the methylation pathways panel run first, but I understand about your neuropathic symptoms and the need to try to control them soon. I might mention that R-lipoic acid is helpful in many cases of neuropathy, too. So long as a person doesn't have a big body burden of mercury, they can take R-lipoic acid on a once a day basis.

Toxicity to B12 has never been reported.

I do recommend working with a physician, and I understand that you are.

Best regards,

Rich

 

[Stacy2012]

Hmmm...1 step forward 2 steps back.

I do have a dr but much of this is me going out on my own and then taking what I find back to him. 1. because i care about me more than he does, lol and 2. it is cheaper for me to do the lab tests on my own and take results back to him.

Right now my head is swimming with which direction to go first. I have been reading about the hashimoto and found I should do an anti TPO and TgAb test to determine if I have that.

But then all this B12 is swimming in my head too.

So many tests, iron/ferritin, and etc that I get overwhelmed and have to walk away then come back and try to figure where to focus first.

I feel I have to have my ducks in a row and what I want and what questions I have before I go to the doctor next week because all he wants to do is give me a pill and send me home.

I began your video, you look and sound to be very knowledgable and clearly, as you have shown me today, you have a heart to help people.

thank you.

 

[richvank]

***HI, Stacy.

Hmmm...1 step forward 2 steps back.

I do have a dr but much of this is me going out on my own and then taking what I find back to him. 1. because i care about me more than he does, lol and 2. it is cheaper for me to do the lab tests on my own and take results back to him.

***I understand. I need to recommend that people work with a physician, because I am a researcher and am not trained or legally authorized to treat patients. Also, there can be some serious adverse effects in certain unusual cases, and it's best to have a physician checking on things.

Right now my head is swimming with which direction to go first. I have been reading about the hashimoto and found I should do an anti TPO and TgAb test to determine if I have that.

***Yes, testing for the antibodies is the way to be sure whether one has Hashimoto's. The treatment from the conventional docs is still thyroid, whether it is Hashimoto's or other hypothyroid conditions. The docs should be on the lookout for thyroid cancer, too. Dr. Byron Hyde in Canada has reported that he finds it often in ME patients.

But then all this B12 is swimming in my head too.​

​

***Great stuff, isn't it?​

So many tests, iron/ferritin, and etc that I get overwhelmed and have to walk away then come back and try to figure where to focus first.

***The nice thing is that most of it stays the same from one day to the next, so you can come back and review it until you've got it.

I feel I have to have my ducks in a row and what I want and what questions I have before I go to the doctor next week because all he wants to do is give me a pill and send me home.

***I get it.

I began your video, you look and sound to be very knowledgable and clearly, as you have shown me today, you have a heart to help people.

***Well, you can fool some of the people some of the time!
Actually, I would like to see everyone who has this disorder recover completely, and soon!

thank you.

***You're welcome.

***Best regards,

***Rich

 

[Stacy2012]

Rich, if you don't mind, one more question.

I have been thinking all day about my high 3000 blood serum and I said I did not take any B12 prior to the test but upon thinking, I did take that cheap walmart B complex and I didnt really consider that a "B12" supplement. However, I did take it quite a bit before that test.

Here is the ingredients:
Spring Valley B complex Time Release
B1 as thiamin 100 mg
B2 as riboflaven 100mg
B3 as niacinicamide 100 mg
B6 as pyrdoxine hydrochloride 100mg
Folate as folic acid 100mg
B12 as cyanocobalamin 100mg
Biotin 100mcg
Panothenic Acid as d-calcium pa??cant see it 100mg

It contains soy and other stuff

And I took 2 of these a day, so double all that, for at least a month prior to test.

Could this have caused my 3000 B12 level?

thank you sorry to keep bothering you!

 

[richvank]

HI, Stacey.

I think you must mean micrograms for the B12.

Yes, if you took 200 micrograms per day of cyanocobalamin for a month, that was likely your main source of B12 during that time, even if you were eating a lot of meat.

In view of this, together with your low MMA, I think it's possible that your high serum B12 was due to high B12 intake, and you don't have a functional B12 deficiency. However, you still do seem to have quite a few symptoms that are common in ME/CFS. It's true that hypothyroidism can produce many of these same symptoms, and you do appear to have primary hypothyroidism. However, your freeT3 and free T4 were still holding up pretty well when you had them tested, so it doesn't seem that your hypothyroidism has gotten very severe yet.

So I'm not clear on what's going on with you yet. I understand that your doc is giving you thyroid hormones. You might see whether they help, and that would give better information about whether hypothyroid is causing the symptoms. If not, then I would suggest running the Health Diagnostics and Research Institute methylation pathways panel to see whether you have a partial methylation cycle block and glutathione depletion. If you do have a methylation cycle partial block, then a B12 functional deficiency is likely, and the methylation protocol would be likely to help you.

Best regards,

Rich

 

[Stacy2012]

Oh , sorry, you are probably right, the writing was so small that even with my glasses I could barely read it!! I guessed at the spelling on most of it!

Well, if what you say is correct that opens up a whole new door that I have not even stepped through, let alone understand. Guess I gotta keep reading.

thank you so much for your input, greatly appreciated.

 

[Stacy2012]

But I am confused, even if the B12 serum is high from me taking the vitamin, the MMA is still low, so wouldnt that still mean low B12?

 

[Stacy2012]

lol sorry, keep thinking even after I posted, haha!

 

[richvank]

But I am confused, even if the B12 serum is high from me taking the vitamin, the MMA is still low, so wouldnt that still mean low B12?

Hi, Stacy.

MMA goes in the opposite direction. That is, if there is not enough adenosyl B12 in the cells, then MMA is high. Usually what I see in ME/CFS is that the serum B12 is high-normal or high, and the MMA is also high. In that situation, it is pretty clear that there is a functional B12 deficiency.

However, when the serum B12 is high, and MMA is low, as in your case, it's not so clear. It could be that you have normal B12 metabolism, and you have just taken in a lot of B12, so that the cells have more than they need and are exporting the excess back to the blood. If that's the case, I doubt if you have ME/CFS, and there must be another explanation for your symptoms, such as hypothyroidism.

Or, it could be that you have a functional B12 deficiency that should be producing high MMA, but another deficiency is obscuring that and keeping MMA low, such as low B2, B6, biotin, or some of the amino acids.

A third possibility is that your cells are able to make enough adenosyl B12, which keeps MMA low, but they are not able to make enough methyl B12, so that you have a partial methylation cycle block, and thus you have ME/CFS. There are rare genetic mutations that can cause this situation, but since you were healthy for about 30 years, this doesn't seem very likely to me.

So as I wrote, I would suggest trying the thyroid hormones your doc has prescribed for you. If they don't help your symptoms, then I would suggest the additional testing, which will indicate whether you have glutathione depletion and a partial methylation cycle block, and thus would be a candidate for methylation treatment.

Best regards,

Rich

 

[Crux]

Hi Stacy;

Neuropathy surely is painful and frightening. It's truly a challenge to figure out why when B12 levels come back high.

I'll bring up some more possibilities to consider.

There are cases of people who have elevated B12 and gut dysbiosis, and or liver trouble. Some people have trouble transporting B12 to the spine and must rely on passive diffusion for it to transport to the spine. Some people have to take larger amounts of it for this to happen. They have to rely on symptom relief rather than blood test results.

But, there are also cases of copper deficiency causing various types of neuropathy. Here are a couple of case studies that may have some similarities to what you're having. Though they do have some differences.

http://www.acnr.co.uk/JA07/ACNR_JA07_abnwinner.pdf

http://www.ajnr.org/content/27/10/2112.full

I also wonder if maybe you've been exposed to some sort of neurotoxin. Maybe the Doc could check for this?

 

[Stacy2012]

Rich, do you no or is there somewhere on these forums where someone talks about neuropothy symptoms and thyroid???

You may be correct, it may be from thyroid, however, my symptoms are scary, and seem to be getting worse. Even in the last couple days weird sensations periodically in different places, hard to describe, but almost like...nerves waking up turning on then off again? Like in bed last night and a sudden....tingle, sensation in my back, quick and then gone. It has happened in other areas also. So I am nervous to sit around waiting and hoping this low dose of nature-throid is the answer to my problem, when i wonder each day what new symptom will appear.

Sometimes my feet or foot have moments of extreme sensitivity where even a sheet touching them hurts. The quarter size numb spot on my heel hurts when the skin stretches, almost as if the "live" skin is pulling away from the numb skin, and when I move my ankle its extreme pain till it stretches out.

I have decided not to give up on B12 yet. After thinking about how I may have ruined the serum test by taking that B complex so much right up until the test, maybe I still need the B12 version as you suggested.

Crux thanks for the links I will check them out!

 

[Crux]

Hi Stacy;

I feel I should also write to you that my serum B12 levels are above 3000. I take 5mgs. of AOR brand sublingual daily. If I take less, my neuropathy returns.

Enzymatic Therapy brand is effective, in my opinion. Jarrow's is now less potent somehow. I'm guessing that it's about 1/5 as effective as it was originally.

I still have a numb area on my left heal. It seems to be slowly healing, but it could be permanently damaged.

I'm glad you're bravely standing your ground.