• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Bad reaction to B12 shot — help!!

Hoosierfans

Senior Member
Messages
400
After running tons of B12 / folate bloodwork, an OAT and a NutraEval, it looks like I have B12 deficiency. So, my ND and I decided to start shots.

I joined a FB B12 group and the advice there is 1 mg hydroxyB12 IM, every other day supported by 5 mg folic acid daily, and adequate potassium through foods (since B12 can drain potassium).

Unfortunately all hell broke loose with my first B12 shot yesterday. I had started taking 800 mcg folic acid last week, and upped it to 1600 on Sunday and I was drinking drinks w about 1500 mg of potassium in them so I thought I had my cofactors in line.

I felt more lightheaded and dizzy after the shot, and basically went to bed for the day at 2 pm. Got up this morning and passed out when I tried to get up. My heart rate was WAY below what it normally is (like 25-30 pts lower). I saw it get into the high 50s OMG. And I get super hot when I stand up.

Any ideas what went wrong? I have POTS so am sensitive to anything that vasodialates.


Prev
5 of 5
Remove formattingBoldItalicUnderlineText color
Font size
Insert linkInsert imageSmiliesInsertGallery embedGroup embedAlignmentList
UndoRedo
Toggle BB code

Write your reply...
Post reply
Preview
Attach files
Insert quotes…
Conversation info

Participants
2​
Replies
81​
Last reply date
Today at 2:41 PM​
Last reply from
Conversation participants

  1. [LEFT][COLOR=rgb(18, 101, 161)]Hoosierfans[/COLOR][/LEFT]
  2. [LEFT][COLOR=rgb(18, 101, 161)]Learner1[/COLOR][/LEFT]
    Senior Member​
[/COLOR]
 

xebex

Senior Member
Messages
840
I have had problems with b vitamins whenever I try to take them. I have tried both Cyanocobalamin and methylcobalamin (not tried hydroxy though) the first time I took Cyanocobalamin i thought I had been poisoned, i felt like i was passing in and out of consciousness and was staggering about the house like i was on a ship in a stormy ocean. Luckily it wore off after about 4 hours, i have had similar effects form taking methylfolate too.

Recently i tried to take vit b1 and 2 and they made me feel like my heart was thumping out of my chest and like i was on speed, couldn't sleep all night! I have however had positive results (2 hours of extra energy and clarity) from eating liver, so it's not necessarily B vits that is the issue but maybe rather the very large doses that it comes in or the form they come in.

Also it is worth looking into MTHFR and COMT mutations, you might need to have methylcobalamin and methylfolate instead, i think i'm the opposite and cant take the methyl versions due to being homozygous for COMT. Geting into MTHFR is a huge mine field though, you need a highly experienced practitioner, i just gave up on B vits in the end.

Sorry its not particularly helpful, but maybe will give you some insights.
 

sunshine44

Que sera sera
Messages
1,137
thats very helpful xebex.
I am similar guys. I had some nasty reactions to many vitamins, especially D. Yet i have had extremely low levels and need my levels up, i have finally been able to add some foods past year and low and behold i am doing fantastic with a few high vitamin D foods. Yet i cannot even do one baby drop of D supplement without all hell breaking loose.

can you eats eggs? they are high in b vitamins. so many of us have issues with b and d etc.
 

Hoosierfans

Senior Member
Messages
400
I have done something similar--turns out I had jump started methylation. I believe that Niacin can tamp it down if that is what happened.
I think maybe that’s what happened.

@xebex yes I have the COMT mutations, and none on the MTHFR, so that’s why we decided to do hydroxy instead of methyl forms.
 

xebex

Senior Member
Messages
840
thats very helpful xebex.
I am similar guys. I had some nasty reactions to many vitamins, especially D. Yet i have had extremely low levels and need my levels up, i have finally been able to add some foods past year and low and behold i am doing fantastic with a few high vitamin D foods. Yet i cannot even do one baby drop of D supplement without all hell breaking loose.

can you eats eggs? they are high in b vitamins. so many of us have issues with b and d etc.
i do wonder that the vitamins we react badly to are the ones we actually need arhghh!

i am getting some help form vit B6, all the others i abandoned, I do worry about getting my b vits out of balance though.
 

Hoosierfans

Senior Member
Messages
400
thats very helpful xebex.
I am similar guys. I had some nasty reactions to many vitamins, especially D. Yet i have had extremely low levels and need my levels up, i have finally been able to add some foods past year and low and behold i am doing fantastic with a few high vitamin D foods. Yet i cannot even do one baby drop of D supplement without all hell breaking loose.

can you eats eggs? they are high in b vitamins. so many of us have issues with b and d etc.
Unfortunately I don’t tolerate eggs. Ugh. So many foods I don’t tolerate.
 

sunshine44

Que sera sera
Messages
1,137
oh do i understand! i did not either for many years. Maybe google what foods you can eat that are high in b vitamins and try to add more. I feel like many of us do better with food than supplement versions.
 

sunshine44

Que sera sera
Messages
1,137
i do wonder that the vitamins we react badly to are the ones we actually need arhghh!

i am getting some help form vit B6, all the others i abandoned, I do worry about getting my b vits out of balance though.


i find it SOOOOOOOO frustrating. Like i really could use some of these vitamins gah! I have tried them in so many forms too over past 3 years especially.
 

xebex

Senior Member
Messages
840
I think maybe that’s what happened.

@xebex yes I have the COMT mutations, and none on the MTHFR, so that’s why we decided to do hydroxy instead of methyl forms.

ah i see, ok well i'd imagine that its just the high dose freaking out your body. Can you try taking some high b12 foods like liver (gross i know but worth it for the experiment) to see if there is any change? I use grass fed beef liver, I soak 1oz pieces in milk over night to remove the bitterness. I then fry in butter and eat with whole grain mustard to take away the taste, i get a small increase in energy about 30mins after eating, and a feeling of mental clarity, doesn't last long and doesn't make a change to my overall condition.
 

Hoosierfans

Senior Member
Messages
400
oh do i understand! i did not either for many years. Maybe google what foods you can eat that are high in b vitamins and try to add more. I feel like many of us do better with food than supplement versions.

The problem is I don’t absorb B12 (same w iron — have to get iron infusions), so I won’t correct the deficiency through diet alone. Darn it!

But maybe I’ll reduce the dose of the shot....hmmm 🤔
 

sunshine44

Que sera sera
Messages
1,137
i hear you, i have the same issues. Yet i do not do well with b and iron infusions. sooooo frustrating.

good luck, yes, maybe that will help you.
 

xebex

Senior Member
Messages
840
Another approach would be to try and improve absorption or look into why you’re not absorbing and fix that. For three years pretty much every supplement I took did nothing, or worse triggered migraines. I finally did a 3 day fast and then spent a week drinking bone broth for breakfast (and gradually adding sold food) and now some supplements are working for me. NAC and ALA did nothing a year ago and now they are helping. My pain has reduced and I’m not crashing as much and can stand up for longer. I’m still not able to take the b vitamins BUT I wonder if I’ll absorb them better naturally now. My migraines have also drastically reduced I still need to be gluten and sugar free though.

A word of warning on long fasts, research into breaking fasts properly and beware of refeeding syndrome I nearly messed myself up badly and had to get checked out at ER. Der!
 

drmullin30

Senior Member
Messages
218
Hi Hoosierfans, if you react badly to eggs and b12 you might have a mercury problem and-or a molybdenum deficiency. I had to take tons of molybdenum when I first started taking b12 and folate and couldn't eat any high sulphur foods e.g. eggs, onions, garlic, cabbage, broccoli and absolutely no sulfites or sulfates in my food for several months. I also used hydroxycobalmin, niacin and took NAC and ALA to help control the methylation and detox the mercury and cadmium but I always had to take really high dose molybdenum, magnesium and zinc when I did. This is all likely due to my BMHT and CBS SNPs. When you start methylation, in the beginning, all hell breaks loose. The beginning really is the worst time.
 

Hoosierfans

Senior Member
Messages
400
Hi Hoosierfans, if you react badly to eggs and b12 you might have a mercury problem and-or a molybdenum deficiency. I had to take tons of molybdenum when I first started taking b12 and folate and couldn't eat any high sulphur foods e.g. eggs, onions, garlic, cabbage, broccoli and absolutely no sulfites or sulfates in my food for several months. I also used hydroxycobalmin, niacin and took NAC and ALA to help control the methylation and detox the mercury and cadmium but I always had to take really high dose molybdenum, magnesium and zinc when I did. This is all likely due to my BMHT and CBS SNPs. When you start methylation, in the beginning, all hell breaks loose. The beginning really is the worst time.
Dr. Mullin,

Thanks for this. So I have double defects on both BHMT and one of the CBS genes (699T). I’m already on B1 and Molybdenum for the trans sulfuration pathway — how much molybdenum do you take? I’m on 250 mg and been on that for a couple of months now.

I just got back my OAT and NutraEval tests, and all my glutathione markers are in the toilet. So what *might* have happened is that I “Pushed” the B12/folate cycle without getting that glutathione cycle working first (i.e. NAC). Can you tell me a little more about your BHMT and CBS issues? Specifically I‘m familiar with CBS (but I do tolerate sulphur foods except eggs), but I don’t know what having BHMT merits when when it comes to methylation.

I tolerate oral B12 just fine; I think the injection was just too high a dose for me in particular. And, after doing some research it looks like I overdid the cofactors (folic acid and potassium) which in my case lead to too much vasodialation (I’m prone to that) as both are vasodialators. Oops!
 

drmullin30

Senior Member
Messages
218
Hi Hoosierfans,

I'm not a doctor, its just the way my initials work out ;) but I've had to learn a ton about methylation over the last 10 years.

A BMHT down regulation works like a CBS upregulation so they compliment one another and will make symptoms worse. What this meant for me was when I started taking b12 and folate, I immediately had a huge increase in sulfites, sulfates, glutamate and ammonia. All of which cause anxiety, heart palpitations, joint pain, brain fog, depression, dizziness and other nasty symptoms. I am homozygous for MTHFR 1298 so that added to the ammonia problem.

I believe that what was happening was that once methylation got started, the detox pathways opened up and I started to excrete heavy metals. Cadmium, toxic copper, mercury, aluminum etc. and this further up-regulated the CBS and sulfation pathway as my body tried to produce more glutathione to deal with the toxic load. I also have numerous GAD1 SNPS so my body is already high glutatmate low GABA. So in the early days I was taking up to 6 mg (6000 mcg) a day of molybdenum (I think you mean 250 mcg for your dose because 250 mg of molybdenum would be toxic but 250 micro-grams is actually a low dose) and I also used NAC and l-glycine for a long time to help with anxiety and raise my glutathione and GABA. Glycine will combine with glutamate to form glutathione. This really helped with the copper and mercury toxicity. I also used TMG, zinc, and phosphatydilcholine to help with the BMHT. I also have been using Iodine for a few years now. I did a high dose protocol for a while to help with toxicity as well. Iodine is also good for lowering glutamate and raising glutathione.

I continued to increase b12 and folate and slowly switch from hydroxycobalamin to methylcobalmin all the while taking high dose zinc, molybdenum and magnesium, NAC and glycine. This was necessary for me as I have MTR and MTRR and MTHFR SNPS so my methylation was very poor but every time I improved my methylation, more metals and toxins would be expelled and I would get symptoms again. I also used coffee enemas and saunas as much as possible when I think I'm detoxing. Glutamate will increase during any kind of detoxification.

Eventually, after a few years of improvement doing the above I was able to drop NAC and glycine and once my folate and b12 doses got high enough that my methylation was working well, I accidentally ended up copper deficient from the myelin healing and high dose molybdenum so I had to cut that back. I also needed to cut back on zinc as well and add potassium and calcium.

Now I am on the advanced methyltation protocol (Freddd's protocol) and I only need molybdenum when I am detoxing and my sulfation up-regulates. I can tell when this is happening because the extra glutamate causes anxiety and heart palpitations and the extra sulfates make my urine really bright yellow even when I'm not taking B2 (which will also cause bright yellow urine). In the beginning I was able to to verify my high sulfate loading due to my CBS and BMHT by using sulfate urine strips like these https://www.amazon.com/Macherey-Nagel-91329-Quantofix-Sulfate-Strips/dp/B00S1UL4KQ.

I can tell you as well now from experience that oral b12 doesn't work very well. On Freddd's protocol, I worked up to 75 mg a day of oral b12 and when I switched to the transdermal oils, it was like I was back at square one for a few days and had I to go back to taking high dose molybdenum for a while. I would estimate that injections or transdermal is at least 10X as effective as oral. Also riboflavin B2 is also crucial for b12 and folate utilization and methylation.