When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year ...
Discuss the article on the Forums.

Severe vitamin b12 deficiency.Cant get my b12 levels up please help!!!

Discussion in 'General Treatment' started by J4son, Nov 26, 2017.

  1. J4son

    J4son

    Messages:
    23
    Likes:
    2
    It all started around 2 years ago when I was taking megadoses of zinc(like 200 mg a day for a lot of time).Im 19 years old and I didnt have any problems untill then.This zinc megadosing completely killed my libido and made me very depresed , unmotivated and lethargic.I have also developed a chronic cough.

    After a lot of researching I found that I probably had developed a copper deficiency.I started getting more copper into my system(with copper supplements and other sources).My chronic cough vanished and my libido somehow returned.But the libido was temporary.

    I kept researching and I found this article

    -> https://health-boundaries.com/fingernails-2/

    Which says that the moons on your nails(lunulae) are an indicator of your vitamin b12 levels

    I bought some vitamin b12 from the store(solgar 1000mcg) and I began taking it.Later that day I found my libido returning and my pale complexion becoming more normal skin color.Also , after 2 days I noticed that 3 tiny lunulae have appeared on my index finger,middle finger and ring finger of my right hand(I only had it on my thumbs).I thought I finally knew what was going and what I had to fix.But this didnt last long.

    After a few days , vitamin b12 was doing nothing for me.Like I couldnt absorb it.I looked into vitamin b12 interactions with other vitamins and I took folate(2000mcg).It made me feel even worse , and my cough slighlty returned.It also made me have a burning sensation in my mouth and a weird feeling of thirst.The small moons did not dissapear though.

    I thought I have depleted vitamin b12 so I tried taking large doses of b12 (like 6000mcg).I took the now foods and put under my upper lip.The citric acid ended up damaging and tearing my upper lip frenulum.Also I took them under my tongue.But it did nothing.

    I am completely desperate on this situation and have no idea what to do.I found another thread on this forum that was claiming that you cant absorb vitamin b12 if you dont have vitamin b2(robiflavin).Is this ture?Could this be the cause?Please help me
     
  2. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

    Messages:
    540
    Likes:
    889
    @J4son You may do a lot better by eating liver which is an absolute treasure chest of essential nutrients:
    https://www.google.com/search?ei=8S...i30k1j0i30k1j0i8i30k1j0i22i30k1.0.GcEqIAGr-Y0

    How Nutritious is Liver? | Berkeley Wellness
    www.berkeleywellness.com/healthy-eating/food/article/liver-love-it-or-leave-it
    Apr 26, 2017 - If you're a fan of eating liver (or considering trying it for the first time), here are some of the pros and cons of this organ meat. Good news: ... A 3.5-ounce serving of cooked beef or chicken liver supplies more than your daily requirement of vitamin B12 and large amounts of other B vitamins. It is also rich in ...

    The Minerals in Beef Liver. ... Beef liver is known for containing a high concentration of vitamin A -- each slice provides over 400 percent of the recommended daily allowance of vitamin A for an adult -- but it is also a rich source of a variety of essential minerals, including copper, phosphorus, selenium, zinc and iron.
    The Minerals in Beef Liver | Healthy Eating | SF Gate
    healthyeating.sfgate.com/minerals-beef-liver-6755.html
     
    Mary and Gondwanaland like this.
  3. PinkPanda

    PinkPanda Senior Member

    Messages:
    342
    Likes:
    904
    Solgar and now foods contain methylcobalamin?
    I tolerate vitamin B12 in the form of hydroxoB12 best. It can be converted to both methyl- and adenosylB12, which are both needed in the body. When taking methylB12 you can run in danger of having too little adenosylB12.
    I would consider giving sublingual/ injected hydroxoB12 a try.
     
    Gondwanaland likes this.
  4. andyguitar

    andyguitar Senior Member

    Messages:
    622
    Likes:
    927
    South east England
    That is a massive amount of zinc to be taking. How about just trying a low dose multi vit/mineral for a couple of months?
     
  5. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,371
    Likes:
    4,087
    Pacific Northwest
    Sorry you are in such a scary situation. As you're discovering, nutrients can be very powerful in changing how your biochemistry works. Too much or too little of various nutrients can be quite dangerous.

    They typically don't work by themselves, but rather they work with other nutrient cofactors to make whatever biochemical process work. Throwing in a large dose of one nutrient can cause all the cofactors to be used up, and then you're stuck. And, those same cofactors nay be needed in other biochemical processes, so by draining them, you've stopped them, too. (This is a simplistic overview, but you get the idea...)

    Having your nutrient status tested, ideally with a test like Genova Diagnostics NutrEval, can help you develop a balanced approach that will keep you out of trouble.

    And educating yourself about various processes and cofactors will help you understand the dynamics.

    B12 is used in the methionine cycle. You need B6, B2, magnesium, and possibly trimethylglycine, potassium, and/or methionine to use the B12 properly. And you need sufficient 5-methyltetrahydrofolate coming into the methionine cycle from the folate cycle next door. And then you'll want adequate amino acids, B1, and molybdenum to make glutathione, which mobilizes toxins, and then sends them out of your body through the transsulfuration cycle.

    A good functional medicine doctor can help you rebalance your system. It sounds like it might be a wise investment for you.

    Best wishes...
     
  6. wastwater

    wastwater Senior Member

    Messages:
    1,062
    Likes:
    722
    uk
    I saw an example of a b12 genetic problem leading to an immune dysfunction it was very rare picked up in genomics study the treatment was b12
     
  7. J4son

    J4son

    Messages:
    23
    Likes:
    2
    yes but when I took b12(methylcobalamin) everything seemed fine.I dont think I need adenosylB12.For some reason my b12 cant go up.Maybe I causes copper defciency from supplementing with folate?Also my zinc levels appear to be extremely low.Took the zinc cant taste anything.I think something is missing but I cant find what.Also my potaasium is somewhat low(4.3).Could this be the case?
     
  8. J4son

    J4son

    Messages:
    23
    Likes:
    2
    How much potassium do I need ?Would eating like 6 bananas per day fix my potassium and allow vitamin b12 to be absorbed?
     
  9. J4son

    J4son

    Messages:
    23
    Likes:
    2
    update:

    Yesterday at night I think I had a panic attack.My hands became numb and so did my face.To the point my speech was impaired.I was rushed to the hospital because we did not know what it was.I felt like my old self within an hour.Doctors took blood tests and found:

    Na: 138 normal range(135-147)
    K:4.1 normal range(3.5-5.1)
    Ca:10.4 normal range(8.5-10.5)
    Mg:2.06 normal range(1.58-2.55)
    P:3.0 normal range(2.5-5)

    I kept insisting that my potassium was low but since it is withing the ''normal range'' they thought I was crazy.Also what about my magnesium?I think I should drop all vitamin b supplements and up my potassium from natural sources.What do you think?
     
  10. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,371
    Likes:
    4,087
    Pacific Northwest
    Eating a while avocado or drinking 8 oz. of fermented beet juice would give you more potassium than the bananas. There is also prescription potassium, prescribed only if you need it.

    As for B12, you need to look at all the nutrient cofactors.
     
  11. PinkPanda

    PinkPanda Senior Member

    Messages:
    342
    Likes:
    904
    I'm sorry to hear that :(
    Have you ever tried hydroxo (or adenosylB12)?
    methylB12 can cause overmethylation symptoms like anxiety. A number of people don't tolerate it well.

    Because methylB12 is an activated form, it has a rather strong effect in general, it produces a lot of SAMe, and SAMe break down/lower neurotransmitters. HydroxoB12 is activated at the body's pace so it doesn't induce overmethylation symptoms that easily. Also, adenosylB12 helps break down odd-numbered fatty acids to succinyl-CoA for the citric acid cycle, so it can be benificial to have that effect from hydroxoB12, too.

    You could also be deficient in other vitamins. Vitamin B3/niacin is used to treat overmethylation symptoms, it might also be helpful.

    If you are having so many problems from the supplements, dropping all supplements for a while might also be a good idea.
     
    Mary likes this.
  12. J4son

    J4son

    Messages:
    23
    Likes:
    2
    Hello , thanks for answering.

    Unfortunatelly I cant find adenosylb12 where I live and if I ordered it online , it would take a long time to arrive.

    My lower back is stiff(like I have trained) , and after what happened I am afraid to supplement with vitamin b12 again.
    Will taking niacin with it stop burning potassium while at the same time restorng my b12 stores?Is this what you mean by stopping overmethylation?
     
  13. PinkPanda

    PinkPanda Senior Member

    Messages:
    342
    Likes:
    904
    No, I don't think niacin will help your potassium levels, especially if methylB12 keeps depleting them. I would also be careful with taking more methylB12 after landing in the ER from it. Niacin can reduce SAMe, but it can't compensate the whole effect of methylB12.

    If you really have vitamin B12 deficiency, niacin will also not help with that.
    Do you have a doctor who can test you for B12 deficiency? Doctors can give hydroxoB12 injections in case of deficiency.
    I would try to solve the B12 issue, before trying new supplements, that might worsen your B12 levels.
     
  14. Mary

    Mary Forum Support Assistant

    Messages:
    3,513
    Likes:
    7,874
    Southern California
    @J4son - It is possible to have normal potassium on blood work, but low intracellular potassium. Richvank did a post on this, explaining why people with ME/CFS are prone to low intracellular potassium: http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422

    Additionally, taking B12 and/or folate when you are deficient in them can deplete potassium. The B12 and folate will cause cells to divide more rapidly and do what they are supposed to, increasing the need for potassium, and thus causing a deficiency. This happened to me and many other people on this board.

    I know the B12 initially made you feel good, and then a few days later it didn't. I don't know what your symptoms were when you say the B12 stopped helping but that pattern is consistent with potassium depletion. Folate initially gave me a nice burst of energy and then a few days later I was hit with severe fatigue, which was my potassium tanking.

    i'd suggest getting some low-sodium V8 (or generic vegetable juice) and drinking several glasses of it. It's high in potassium. The low-sodium kind has more potassium than regular V8. I don't think bananas alone would be enough. And then see how you do. And if you improve, it may be an indication that you need extra potassium. I ended up titrating up to 1000 mg of potassium gluconate a day (in divided doses), which is a little less than 25% of the daily RDA. I also drink low-sodium V8. Actually after starting the methylfolate and getting that severe fatigue, I realized it was very familiar - I'd had symptoms of low potassium even before starting the folate - that particular awful fatigue - only I never knew what it was. I just assumed it was another awful symptom of ME/CFS. But since I've started taking extra potassium, it doesn't happen any more. Though of course I still get PEM and lack stamina etc. but at least I'm not dealing with low potassium.

    @Learner1 makes some very good points. Nutreval testing can be extremely helpful and a good integrative or functional medicine doctor I think is the most likely to be able to help you.
     
    Learner1 likes this.
  15. J4son

    J4son

    Messages:
    23
    Likes:
    2

    I am not exactly sure that vitamin b12 caused the potassium to go low.I was taking vitamin b2(400 mg a day) at the same time so I think that has something to do with it.


    I am sure that I have vitamin b12 deficiency.When I took it first time I felt better immediatly and small lunulae appeared on my nails.But then it stopped working.When I also tried supplementing with b12 two days ago , I felt a tingling on my feet(an electrical feeling , like nerves are getting activated) but no libido and energy boost and no lunulae reappearance.

    I think that my b12 is low because my body's homeostatic mechanism have set it low.Since I am very low in zinc , could that have something to do with my body not being able to replenish the b12 stores?
     
  16. J4son

    J4son

    Messages:
    23
    Likes:
    2
    what are those cofactors?
     
  17. J4son

    J4son

    Messages:
    23
    Likes:
    2

    I bought potassium chloride(nosalt) from the store to use it as a potassium supplement.Is it good?Are you taking b12 now?
     
  18. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,371
    Likes:
    4,087
    Pacific Northwest
    B2, preferably as riboflavin-5-phosphate
    B6, preferably as pyridoxal-5-phosphate
    magnesium (watch for arsenic contamination)

    Then these to make glutathione and go through transsulfuration:

    Glycine
    Glutamine
    NAC
    B1, as benfotiamine or allithiamine
    Molybdenum

    And maybe:

    B3, as niacinamide
    Potassium
    Trimethylglycine
    L-methionine
    5-methyltetrahydrofolate

    Its a good idea to run a nutrient test like a Genova Diagnostics NutrEval to see what you need and then take accordingly. Guessing, or following someone else's protocol can get you into trouble.
     
  19. Mary

    Mary Forum Support Assistant

    Messages:
    3,513
    Likes:
    7,874
    Southern California
    I've never used no salt but from what I can tell it's just potassium chloride. I don't know if they add anything else to it. I use potassium gluconate and don't know how the 2 compare although low-sodium V8 does have potassium chloride.

    You might do a post asking how others do with no salt vs. other potassium supplements.

    I do take B12 (methylcobalamin), I've taken it for at least 20 years. I also take methylfolate and a ton of other stuff.
     
  20. Rlman

    Rlman Senior Member

    Messages:
    257
    Likes:
    151
    Toronto, Canada
    potassium level of 4.3 is normal from what i have read. most healthy people have it around there i think. i think i read levels over 4 or 4.2 is good.
     

See more popular forum discussions.

Share This Page