I went off all methyl supplements and was using a low-level B supplement that had folic acid. I continued having the burning/tingling sensation in my mouth, hands, and feet that started when I began the protocol. I revisited the idea that I have donut hole deficiency and realized that the protein powder and bars I eat on a regular basis have added folic acid. If I have the MTHFR mutation and can't convert folic acid, I reasoned that this could explain my symptoms. I just ordered a 23andme kit to see.
I then decided to try the Active B12/methyl folate supplement recommended by Dr. Ben. He recommends starting with 1/2 tab, but since I've had bad responses, I decided to do 1/4 tab. It took just two days for the severe hypokalemia symptoms to start: excessive thirst, frequent urination, muscle twitching, palpitations, depressed mood, and worst of all GI troubles and malabsorption (going 5 times a day). I have had 1300mg of Potassium Chloride already today and it has helped some. But it is really gagging me. I added 1/4 tsp to V8 and to a flavored water drink and had to force it down. I've had so much of it in an effort to manage the hypokalemia. The potassium gluconate doesn't seem to do anything for me. I was adding 500mg of it at a time to beverages. I will try some more again today, but have little hope of effect. The hardest part for me is knowing that I have had hypokalemia for 3 months of supplementing now. It sounds like people have to supplement with it for YEARS if they stay on B12.
I'm beginning to wonder if B12 and potassium are agonists. No matter how long I take B12 & folate, I will have hypokalemia. For some reason, with my body it's severe. I feel like it's ruining my life! When I take it, I don't have the energy to exercise, I get bloated, and I'm depressed and cranky. I'm wondering if I can take it once a week or even once a month to keep myself going. Honestly, I feel pretty good when I don't take anything. I would prefer to have the neurological damage that's been done be healed, but if I had to live with the status quo and just have no more damage, I would prefer it to the hypokalemia. (Just to reiterate: I don't have CFS. Neuro problems are my primary symptom, though what made me consider B12 deficiency was a new, profound fatigue, hair loss, shortness of breath, etc. Everything is better except I still have some hair loss which I understand can take a long time to address). Since there are people who manage OK with once-a-month B12 shots, I wonder why I couldn't take oral B12 once a month? I would take 5000 B12 since my reaction doesn't seem to be dose dependent.
Because I've had no blood work, I would like to see where I'm at in a month with no supplementation. At least I'll see what my levels would look like if I supplemented monthly. I'm open to your thoughts, but I want you to understand that my reaction is serious. It's not just mildly irritating or I could stick it out!