Functional B12 deficiency?

[LisaD]

I would appreciate some help from Freddd or someone with knowledge of his protocol.

I've been doing Freddd's protocol for a number of months and thought I was being successful. I've felt so much better. Anxiety way down, fatigue way down, energy up. I don't have diagnosed chronic fatigue but was exhausted and had severe anxiety. I am heterozygous for 3 MTHFR genes. (Have a Genetic Genie report of all the other stuff).

I've been increasing folate as symptoms seemed to dictate and am at 9,600mcg. I had been at about 3,000mcg for some time, but ended up with this significant increase last month due to angular cheilitis. Any drop seems to cause angular cheilitis. I have also been taking MB12 sublingually with b12 oil. I was taking about 6grams sublingually and adenosylB12 (1/4 of 10gram tab) before switching to the b12 oil a couple of weeks ago 1 to 2 times per day. (Thinking that wasn't nearly enough.)

2 weeks ago I tried to drop down on folate, but started having mild sore throat, burning in chest, anxiety and reflux (I think) the same day I reduced. This was three days after I started the b12 oil. I went back to the 9.6gram dose and GI symptoms seemed to resolve temporarily, but anxiety and sleep issues continued. In a few days the burning in my stomach was back and more intense. The next day it moved into my arms with severe burning skin and slight numbness in palms. I saw my chiropractor who said it was a systemic reaction of some type. The burning then began moving around to other areas of my body and I realized it was neurological and is the symptom of b12 deficiency. I started taking b12 lozenges all day long and using the b12 oil 3 times per day, but the burning has continued like a bad sunburn moving from one area to another. I have never had these symptoms before.

My nurse practitioner has done some blood work, some of which has come back and some we are waiting on. In the meantime, she has prescribed shots 6mg 2x/wk

red blood cell folate 786 ng/ml..
b12 greater than 2000 (can't find my b12 test before starting methylation protocol. It wasn't this high but it was out of range and a Dr. told me she thought I wasn't using it.)
potassium 4.1
calcium 9.8
magnesium 2.2
ferritin 23

There are other tests, but not sure what all is relevant. We are waiting on b1,2,3,6, vit. c and urine heavy metal panel.

My fear is that I have functional b12 deficiency and the folate is causing neurological damage. My anxiety is extremely high. I would so appreciate help. Feel like I'm falling apart again.

 

[Gondwanaland]

Which co-factors and how much are you taking? (Other Bs, minerals, electrolytes etc)

 

[LisaD]

Yasko's All in One 4 capsules This was my first methylation supplement and I got promising results from just that. It has a boat load of co-factors in small amounts.
Magnesium Calm 2 tsp. daily
raw liver - small chunk in smoothie daily
egg yolk daily
Selenium - 1 brazil nut plus 100mcg in All in One
iodine for thyroid - about 3mg
zinc- 27.5 (including what's in All in One)
fermented Cod liver oil 1tsp.
Vit E. with mixed trocopherols (Unique E) 400IU
Ubiquinol CoQH 100mg
Vitamin D - 30,000 per week (plus naturally occurring in clo) my blood level is 50
Vit. C (ascorbic acid powder) about 470mg 3x per day
l - carnitine fumerate - I have been dosing up slowly due to Freddd's warning about anxiety. I'm at a little over 1/2 a 500mg Doctor's Choice capsule.)
I just started Swanson's Activated B complex - 2 days ago thinking I might need other Bs, took whole capsule for first time this morning. It has thiamine 25mg, Riboflavin 25mg, niacin 50mg, P5P 25mg, methylfolate 400mcg, mb12 250mcg, biotin 25mcg, choline 25mg, paba 25mg, pantethine 25mg, inositol 12.5mg

Let me know if I should list everything in the All in One. It is extensive.

 

[Gondwanaland]

Just a few things I read today around here and are fresh in my mind right now:

• If serum B12 and B9 are high, you might want to put them into the cells with methionine or SAMe (low and slow)
• L-carnitine fumarate might be too high - Freddd suggests for the most sensitive to use diluted liquid form and micro-titrate, very slowly
• iodine and high dose methyl supps might be burning your thyroid, I never took iodine, but MB12 and Mfolate got me mixed symptoms of hyper and hypothyroid
• your list of co-factors does not include potassium

Other members surely will have more to add. Meanwhile you might take a look atr the documents linked in my signature about Freddd's protocol, especially the ones by caledonia.

 

[LisaD]

Sorry, I forgot the potassium. I take it multiple times per day every time when I start feeling tightness in my calf muscle. I haven't been really good at keeping track, but it's 3 to 4 doses of 1 tsp. (270mg) potassium gluconate.

I didn't have any negative reactions to the l-carnitine fumarate (not sure if I had any positive either, since I dosed it so slowly). I started with just a small pinch of the powder and have not increased it very quickly. Mostly because I keep adjusting other things and try not to change too much at once.

My lab work that came back included thyroid (free T4 1.0, free T3 3.8, TSH 1.09). I'm on 7.5 mg armour and 5 mcg cytomel and get regular thyroid labs.

I haven't studied the methionine or SAMe. Seems like there was some reason I thought I shouldn't take SAMe, but I haven't a clue what it was. I just was doing so well that I wasn't looking into other co-factors. Maybe I need to look at information on that.

 

[Gondwanaland]

Another possibility is adrenals. Then you need salt.

If your mouth is dry and your tongue rigid, you will benefit from swishing 1/8 tsp of sodium bicarbonate in 1/2 glass of water. If it feels good, a bicarb foot bath or a full bath might be very relaxing. Such alkalizing interventions can cause a candida flare in some people though.

Have you tried niacin for excess methyl goups? This is the opposite of trying SAMe, I suppose.

 

[LisaD]

My adrenals are an issue. I see an Nurse Practitioner for adrenals and thyroid (it has been subclinically low) probably due to adrenal stress. Felt like that was getting so much better with the folate/b12 until I hit this mess.

I do use Real Salt liberally on everything. Took a baking soda bath last night after I convinced myself to lower my burning skin into warm water. I actually did feel relaxing.

Haven't tried niacin. Seemed counterintuitive if I'm getting neurological symptoms from b12 deficiency then wouldn't niacin make it worse by using it up? Although there is 37.6 mg of niacinamide in the All in One and 50mg of niacin in the b complex. So I actually am taking some.

 

[LisaD]

My only theories are:

1) My understanding from reading Rich V. is that if b12 blood levels are high your gut is absorbing it, but your cells are not, so maybe not a gut issue, but rather a missing a co-factor.
2) Maybe I went up too much on folate without going up enough on Mb12 and used up all my Mb12 creating a deficiency.
2) Maybe my Mb12 is being blocked by mercury
3) Maybe have I have some kind of odd case of shingles effecting both sides of my body and no rash (probably unlikely)

I believe that I read that Freddd said folate without b12 can cause neurological damage. This is what is frightening me. Wondering if I should stop the high doses of folate, but quite afraid of a complete crash.

 

[ahmo]

@LisaD I don't know what to make of your nerve issues, But I do have a comment re folate.

I've been increasing folate as symptoms seemed to dictate and am at 9,600mg. I had been at about 3,000mg for some time, but ended up with this significant increase last month due to angular cheilitis. Any drop seems to cause angular cheilitis.

I found that I needed to keep increasing my folate or I'd again develop deficiency symptoms. At some point I made the connection to folinic blocking my folate uptake. Veg folates are in folinic form, and for some can block uptake. When I quit my green veggies, I reduced my folate from 30mg to 15mg. I no longer eat green veggies, as they almost immediately give me low folate symptoms.

A little later on I read, again, about some here taking folate sublingually. When I switched to this method, I reduced the 15mg dosage to 5mg. That's now been my dose for at least 9 months.

 

[ahmo]

Add: you mention adrenals. The reason I eventually stopped the green veggies is that all the while I was increasing the folate, I began showing signs of adrenal stress, first in my face, and then low black pain. When I decreased the folate my adrenals weere so relieved and happy. Adrenals are my most reliable barometer of something gone wrong.

 

[LisaD]

I have read about the food folate issues, but still don't understand how the folate from a bottle is be better than the folate from food. Thanks for explaining it a little more. I did not realize that it was folinic acid. I guess that has to be converted and some of us can't convert. I'll have to pay better attention to that. Really would hate to give up my greens. It would be easier if I could figure out how to catch my folate deficiency before the cheilitis erupts, so I could tell triggers. Have to work on that. I have done my folate sublingually as well, but didn't try to reduce just was trying to keep from having to go up any more. Right now I'm doing sublingual b12 all day long and trying to save my teeth and gums in the process, so quit trying to do the folate sublingually as well.

 

[pogoman]

I've been increasing folate as symptoms seemed to dictate and am at 9,600mg.

should that be 9600 mcg?

 

[LisaD]

Oh my, yes. I meant 9600mcg. 9.6mg sorry. I'll edit the post and correct.

 

[LisaD]

I got a brief reprieve from the skin burning before bed last night which was very nice. Then back with a vengeance in the middle of the night waking me up. Can skin burning be a potassium issue? or just B12?

 

[Gondwanaland]

Are you tolerating tooth paste fine?

 

[LisaD]

No problem with toothpaste that I'm aware of.

 

[Gondwanaland]

No problem with toothpaste that I'm aware of.

So I think it is safe to rule out salicylate sensitivity

 

[LisaD]

Good to rule out something. Symptoms of skin burning are kicking up right now. Making clothing touching my skin uncomfortable. Have taken a squirt of b12 oil, 5mg of enymatic therapy b12, 400mg of potassium in 2 doses, some beet and carrot juice, a banana and a little Xanax. Had potassium deficiency symptoms (muscle knots) this AM. Also having urgent diarrhea which I think is a folate deficiency issue for me. I think I might have accidentally skipped a dose yesterday. I try to keep track on a sheet, but am having trouble concentrating with with anxiety level.

 

[Gondwanaland]

I have no idea about your skin issue, but Mfolate put me into what I call a pre-acidosis state. This took me to the ER 3x in one month last year. I had:

• Low body temperature (34.6°C)

Serum results:

• Creatinine 0.92 (lab range 0.52 - 1.04 mg/dL) (MY personal range 0.6 - 0.73)
• Urea 35.4 (lab range 15 - 36 mg/dL) (MY personal range 26 - 33)
• Potassium 5.1 (lab range 3,5 - 5,1 mmol/L) (MY personal range 4.1 - 4.4)
• Sodium 144 (lab range 137 - 145 mmol/L) (MY personal range 141 - 142)

And bloodwork that was normal. I had "nothing" and was sent home 3x. Then after the last time I managed to see a hematologist in the following day and asked him for magnesium tests and the results were:
Serum Mg 2.2 (1.6 - 2.3 mg/dL)
RBC Mg 5 (4.3 - 5.7 mg/dL) <- Dr. Carolyn Dean says below 6 is too low
Urine Mg 4.7 (7.3 - 12.2 mg/dL)

I never came back to the hematologist since he had prescribed me with fluoxetine

But in my understanding my kidneys were struggling to maintain adequate proportions of electrolytes and were trying to spare magnesium. I had been trying to supplement with magnesium for several months then, but never tolerated the forms I tried (epsom salts, Mg citrate, Mg glycinate, Mg aspartate). Then I decided to give a try with magnesium oxide and it worked. Plus sodium bicarbonate baths also helped for several reasons listed in my signature under "Uric acid".

I think another thing you shoulld consider is the fact that all these supplements you are taking are creating an unbearable burden for your liver.

Vitamin D - 30,000 per week (plus naturally occurring in clo) my blood level is 50

That's a huge dose and is antagonizing magnesium

Although there is 37.6 mg of niacinamide in the All in One and 50mg of niacin in the b complex. So I actually am taking some.

If you are getting overmethylation, this is too little niacin since you are still taking all the rest.

Seemed counterintuitive if I'm getting neurological symptoms from b12 deficiency

Overmethylation can also cause neurological symptoms.

Do you know your SNPs?

 

[LisaD]

Genetic Genie Report
heterozygous
3 MTHFR genes
VDR Bsm, VDR taq,
MAO-A R297R
BHMT-08

homozygous
COMT V158M and COMT H62H
MTRR A66G
CBS C699T