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FileTrekker

Vitamin B12 issues?

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So I don't know what type of POTS I have, but I suspect hyper pots, as my blood pressure rising on standing and i have a lot of issues with anxiety and adrenaline etc.

Anyway, last few days especially but over the past week, I've found my issues worse. I feel like I am almost always in a panic attack, my heart rate at resting and standing is significantly higher, and standing up, my heart feels like it's bounding out of my chest.

Just before the weekend gone I had started trying methylcobalamine b-12 as I had heard it can help. I have since read that methylcobalamine b-12 can cause higher levels of adrenaline which is I imagine NOT a good thing!

Has anyone else had issues with B12?

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2 hours ago, FileTrekker said:

Has anyone else had issues with B12?

As you have probably read there are different forms of active B 12. I personally do not tolerate methylcobalamin and need to take hydroxy which does not give me any problems. So perhaps you could experiment with the different forms and methods of taking B 12. Since it is more difficult to absorb it orally I use injections. Best wishes with this!

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1 hour ago, Sushi said:

As you have probably read there are different forms of active B 12. I personally do not tolerate methylcobalamin and need to take hydroxy which does not give me any problems. So perhaps you could experiment with the different forms and methods of taking B 12. Since it is more difficult to absorb it orally I use injections. Best wishes with this!

What issues did you have with methylcobalamin if you don’t mind my asking?

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I get cyconobalamine ( Vit B12 ) IM monthly without any problems, I have hyperPOTS as well.

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Well, right now mine is the worst it's ever been, my anxiety and adrenaline is through the roof and my PVC's are back with a real vengeance. The only thing I can think of that is causing this is the B12.

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11 hours ago, FileTrekker said:

So I don't know what type of POTS I have, but I suspect hyper pots, as my blood pressure rising on standing and i have a lot of issues with anxiety and adrenaline etc.

Anyway, last few days especially but over the past week, I've found my issues worse. I feel like I am almost always in a panic attack, my heart rate at resting and standing is significantly higher, and standing up, my heart feels like it's bounding out of my chest.

Just before the weekend gone I had started trying methylcobalamine b-12 as I had heard it can help. I have since read that methylcobalamine b-12 can cause higher levels of adrenaline which is I imagine NOT a good thing!

Has anyone else had issues with B12?

It's so interesting you ask this. I was so sure that the B12 I was taking, about a year or so ago, was making my POTS (hyperPOTS) so much worse. I'd take a tablet and not long later, literally have an episode. 

When I stopped taking it, and started getting my b12 from natural sources (meat etc), the heart racing symptoms lessened and my panic dropped a lot.

I should point out: I still have lots of issues with my BP and symptoms from that, but my heart hardly ever races anymore, and I was seeing a direct correlation with the b12 tablets and those episodes. I have no idea why, and I can't prove it was that, but it was just so strange how often it happened.

Maybe in a small percentage of us, we have a sensitivity? 

Very sorry to hear you're experiencing that. Do you eat much red meat? Is there anyway you can get your b12 from other sources? 

 

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I found this online: I wonder if this could be the case

Heart Palpitations and Breathing Problems

"Other side effects can be more serious, but are not as common. Those who receive injections have a slight chance of experiencing symptoms similar to those of a cardiac event, such as heart palpitations, a more rapid heartbeat, chest tightness, or chest pains. Side effects of vitamin B12 can also include symptoms similar to those of a cold, such as coughing, low energy, wheezing, and breathing difficulties after minor physical exertion or after lying down. Other rare reactions involve the muscles, including muscular cramps, muscle weakness, muscle soreness, and tingling. People who experience these serious side effects are usually advised to see a physician right away" 

I wonder if this could be the case. I also read that Vit B12 or certain additives in it can cause fluid retention, which in turn also could worsen POTS symptoms. 

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23 hours ago, FileTrekker said:

What issues did you have with methylcobalamin if you don’t mind my asking?

It was so long ago that it is hard to remember, but just “sick” like the flu. It lasted a week to 10 days.

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Same. I feel sick to my stomach right now. Hoping it passes soon, my last dose was on Tuesday.

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Maybe, but I didn't take Cyanocobalamin, I took Methylcobalamine, Your article only seems to be referring to Cyanocobalamin.

"Methylcobalamin (mecobalamin, MeCbl, or MeB 12) is a cobalamin, a form of vitamin B 12. It differs from cyanocobalamin in that the cyano group at the cobalt is replaced with a methyl group. "

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We are all different, but I do well on methylcobalamin sublingually, and can’t tolerate cyancocobalamin. Some people can’t utilize it properly and it just "blocks" the receptor rather than giving you the effects of B12. I haven’t tried other types.

 

I can’t think of any side effects I’ve had from methylcobalamin... I’ve been taking 5mg at a time for many many years. I DID have horrible effects from replenishing my critically low levels - apparently your nerves sort of "wake up". I take it in the morning in case it does give me energy as it’s supposed to.

 

Hematologists have told me, and I have confirmed for myself, that a good B12 supplement taken sublingually is as effective as shots. I was the lowest they had ever seen, and I was started on shots which went poorly because they were cyanocobalamin... I brought my levels up with daily methylcobalamin in large doses.

 

If you swallow the tablet, it’s a different story, because a lot of people lack intrinsic factor to utilize oral supplements or food sourced B12.

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Well, I am glad it worked in your case but I wish I'd never touched the stuff, it's absolutely ruined me. Constant panic attacks and anxiety, hugely increased heart rate, PVCs through the roof. Just hope people take care with these things. 

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Were you diagnosed as deficient?  It's possible you don't need the B12?  I was diagnosed as deficient two years ago.  When I first started taking B12 (including getting shots) my symptoms worsened.  As someone else said apparently this is not unusual bc it "wakes up" your nervous system at the beginning of supplementation.  I still take a supplement and I do not notice symptoms from taking it anymore.  You may want to have a doctor evaluate if you need B12?  A blood test can be done but since you have been supplementing that will affect your test result at least for now.

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I thought I'd give it a go as I'd read it helped a lot of people. My doctors aren't really interested in helping me with POTS and barely believe the condition. Typical NHS stuff.

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FileTrekker,

When I pointed out that people can have allergies to the cobalt in B12, you replied:

>Maybe, but I didn't take Cyanocobalamin, I took Methylcobalamine, Your article only seems to be referring to Cyanocobalamin.
>"
Methylcobalamin (mecobalamin, MeCbl, or MeB 12) is a cobalamin, a form of vitamin B 12. It differs from cyanocobalamin in >that the cyano group at the cobalt is replaced with a methyl group. "

But, I see no reason why it would matter that you took methylcobalamine. The issue is the cobalt in the B12. 

Here is a link to the molecular map of methylcobalamine: https://en.wikipedia.org/wiki/Methylcobalamin#/media/File:Methylcobalamin.png

You can see the symbol "Co" appearing in the center That is cobalt (not to be confused with "CO" which is just carbon and oxygen). If the issue is that you are allergic to cobalt, then that could be why you are intolerant of B12 even in this methyl- form. 

 

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Thank you for this forum and all that contribute to it.
I am newly diagnosed with Dysautonomia and trying to find my way here in CT.  My severe low bp episodes have been curbed by a high sodium(unhealthy) diet , thigh high compression stockings and 7.5 midodrine three times a day. I’m still unable to walk distances and rest frequently. Prior to this I worked out regularly. It’s been extremely hard to understand. 
i became a vegetarian 3 years ago. 
my B12 blood level was 177 yesterday. 
i ordered a Whole Food multivitamin with methylcobalamin 12 mcg from saccaromyces cerevrsaie. I’m concerned about taking this as I’m so sensitive to food since my episodes. I can not eat high carbs or sugars, and can only eat tiny meals because of digestion and low bp trying to digest the food. 
i spend most of my days try to figure out a sodium and hydration ratio to feel good. 
any ideas on the B12 and diet are appreciated. Soup broth has been my go to staple. I tried liquid IV powder and felt horrible.  I’ve been off work and feeling devastated by this. 
thank you! 

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I have no issues taking B12. While I have a few issues with some foods my dysautonomia’s random whims determine my gastric discomfort more than anything else. 

Unfortunately, B12 orally has very limited effect for me. B12 IM (shot in the thy) is much more effective. I still haven’t found the right frequency/dosage yet, as it doesn’t remain in my blood as long as it should. 
 

With B12 shots, I feel better. I have a bit more energy. I don’t have as severe muscle spasms.

I also have a yet-to-be diagnosed movement disorder (cramps/shaking/gate issues) so my experience may not be applicable to others. 

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16 hours ago, JFreeer said:

i became a vegetarian 3 years ago. 

@JFreeer - welcome to this forum!!! I hope you find some answers and encouragement here, we are all in the same boat.  - I have been B12 deficient all of my life but it was the worst when I became a vegetarian.  At that time I was started on B12 shots and stopped them once I reintroduced meat to my diet. When I was diagnosed with POTS 10 years ago my B12 levels again were very low and the shots were restarted. My physician explained that in my case my body does not absorb B12 in the digestive tract, hence the shots. Normalizing my B12 levels has helped substantially with fatigue and energy ( except when in a flare ). I now am switching to sublingual supplement, hoping my body will absorb it. 

 

17 hours ago, JFreeer said:

I’m concerned about taking this as I’m so sensitive to food since my episodes.

Some people on this forum had side effects from B12 which eventually improved. I personally have not had any negative effects from it. Unfortunately with dysautonomia we do not know how our bodies react until we try!!!!! 

 

17 hours ago, JFreeer said:

I can not eat high carbs or sugars, and can only eat tiny meals because of digestion and low bp trying to digest the food. 

Same here. Low carb, high sodium diet, avoiding large meals and eating frequent small meals or snacks has been very effective for me for both POTS symptoms and GI problems. You seem to be doing a good job at trying all you can - keep up the good work and I sincerely wish you the best!!!!

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