B12 Deficiency and POTS

[MomtoGiuliana]

Usually I am just here on the forum as an administrator and moderator, but I want to share my latest experience in hopes it may help someone else.

I was diagnosed with POTS in 2003, and after a period of a about a year, I recovered.  Since that time I have mainly been well with only very minor symptoms and occasional flare ups, most not too severe or disabling.

About 4 months ago I noticed some odd weakness in my arms and hands that would come and go.  I mentioned it to my doctor and she referred me to a neurologist.  I made the mistake of ignoring the symptoms bc they were so intermittent.  I almost felt like it could be my imagination.  I was also having episodic nausea which wasn't normal for me.  Starting about 2 weeks ago I had episodes of fatigue that would last 5-30 minutes along with an ear infection (which was very strange for me too).  From there it spiraled into more severe POTS symptoms until Sunday I was in a full blown POTS "crash"--unable to stand, very weak, extreme dizziness and fatigue.  I went to ER and got fluids and felt much better within a few hours.  It's been so long since I have felt this unwell that I barely recognized at first what was going on--even though I moderate this forum!

Last week when I had gone to my doctor with complaints of episodic fatigue and weakness she ordered a B12 test.  My B12 was low.  I will be getting B12 shots now over a period of months.  From what I understand when B12 is depleted, many mega doses are required to rebuild the stores in the liver.  It's not enough to take supplements by mouth.

I've done a lot of reading about B12 in the last week.  It seems that low B12 is implicated in many neurological problems--including POTS.

This study found POTS patients were more likely to be low in B12 (in adolescence):

https://www.ncbi.nlm.nih.gov/pubmed/24366986

I realize this has been discussed on the forum in the past and we have information already suggesting this can be a possible cause or trigger.

Personally I always believed that a B12 deficiency was not possible unless you had a rare condition b/c B12 is so plentiful in the diet (unless you are vegan) and the body needs so little.  However, it is apparently very difficult to absorb for some people--elderly, vegetarians (I am vegetarian), if you take certain medications such as antacids.  It also has to be converted apparently which is a complex process that can be interrupted in various ways.

I know I was fortunate that my doctor thought to test B12.  Not sure all doctors would do this.  I truly hope this may be useful to others!

 

 

[RecipeForDisaster]

I knew about my severe B12 deficiency way before I went down the dysautonomia road. I was almost excited when they found it because I hoped it was the key to fixing my issues. I tried weekly shots but I got worse because not all of us can utilize cyanocobalamin. The same happened with the nasal spray. Sublingual methylcobalamin in high doses brought my levels up.... I got better in some respects (numbness and tingling, mostly) but a lot of my issues are just as bad now. I was low for many years, being vegetarian and probably also having a lack of intrinsic factor (hereditary, I have pernicious anemia in my family-that means you can't absorb B12 through your stomach). It took my primary way too many years to think to test my B12  

i do think a potential cause of my dysautonomia is having low enough B12 to cause nerve damage. Of course no one can tell for sure. 

[MomtoGiuliana]

Yes that is a good point, that this really is an unknown.  It surely it would not explain all dysautonomia.  It may or may not explain mine.  But it does seem worthwhile to get tested and addressed if low to see if that will help.  

I have read about the 3 forms of B12 and that some people cannot process cyanocobalamin.  So nothing is ever simple--even a seemingly simple vitamin deficiency.

In my case I do wonder if the reason I developed POTS in late pregnancy and post partum was at least partly due to low B12, since pregnancy demands B12 as does breastfeeding.  And then I slowly built up B12 reserves and got better.  And now for whatever reason (aging? :)) I am not absorbing B12 well and so developed another deficiency.  Just one of my many theories--which may be totally wrong!

I do find it interesting that there is at least one study showing a correlation between low B12 and POTS.  Hopefully there will be more studies and better understanding.

[yogini]

Thanks for sharing. Do you think this is new or do you think you always had this, just diagnosed now?

[MomtoGiuliana]

Since I don't think it was ever tested before I really don't know.  

However I am wondering if low B12 during pregnancy and postpartum either exacerbated or caused POTS.  My POTS was even worse postpartum than during pregnancy.  I read that nitrous oxide is dangerous to use in people already compromised with low B12 bc it demands a huge amount of B12 from the liver stores.  I had to have general anaesthesia for my C-section due to an emergency situation that arose during labor.  So I really wonder.  Typical early symptoms of low B12 are very similar to POTS--fatigue, weakness, brain fog.  But also tremors, pins and needles and muscle pains.  I did have these symptoms post partum and was eventually told it was part of POTS.  I didn't question it at the time.

[yogini]

That is very interesting. So many factors interact together it is always hard to know.  I hope that fixing the B-12 makes you feel better.

[MomtoGiuliana]

I agree.  Thank you -- I am hoping to feel better with treatment!

[Pistol]

@MomtoGiuliana - I have B12 deficiency since childhood, have been on B12 shots for a long time. For a few years I thought I was OK and stopped the injections but then developed the symptoms ( weakness, fatigue, pains etc ) and have been on them again since. I also am deficient in Vit D and was just diagnosed with low ferritin. The funny thing is that all of these deficiencies share symptoms of POTS - and since I started supplementation I have been a lot better with energy and fatigue. I agree with  recipefordisaster tthat vit b 12 deficiency can cause nerve damage and wonder if this might be a potential cause for POTS. With the injections you should feel better soon, it does kick in fast. I wish you good luck!

[RecipeForDisaster]

It stunk for me because the shots and nasal spray made me so much worse. I definitely can't utilize cyanocobalamin (makes my deficiency make even more sense because food is fortified with that form) and it's very difficult to get another form as an injection or other route. 

 

My ferritin and vitamin D were also very low. It's interesting how many of us share these. With each discovery I hoped we found something treatable that would fix me, and I think increasing my levels did help, but they didn't give me more than 20% improvement if that. I wonder if I have other deficiencies-I don't think it's my absorption that's the issue because my iron saturation is easily maxed out with pills... I don't have trouble with food/protein and am not that thin. The iron and B12 might have been diet related since I haven't eaten meat in almost 30 years.

[MomtoGiuliana]

Thank you.  I do not feel better after one shot, and in fact feel worse.  But from what I understand from another support group specific to B12 deficiency that is not unusual.  Any nerve damage healing would be a slow process. Ive had increasingly significant symptoms over a 4 month or so period so it makes sense that that would not disappear immediately.  Also it is confusing bc deficiency and POTS symptoms overlap so much as others noted--I am not sure what I am experiencing is POTS and what is deficiency.  Neurologist told me that Vit B12 deficiency doesn't disable people terribly--that the symptoms are mild.  But I am not well enough to work right now.

How did you find out you can't utilize cyanocoblamin @RecipeForDisaster ?  It is interesting that deficiencies are common in our population.  One thought I have based on my experience with seemingly random flare ups is that perhaps our autonomic nervous system is just super sensitive to even minor changes in our bodies.  Becoming deficient in something throws us out of balance, for example.

I have also been reading that people do become disabled with MS-like conditions only to learn after years of being unwell that they have B12 deficiency.  After months of treatment their symptoms improve. So it seems it certainly can progress if not treated.  

And as I noted above there are small studies that find that POTS patients are lower in B12 than controls.

[dizzytizzy]

Hi @MomtoGiuliana. I truly think B12 is part of the dysautonomia issue.

I was just recently diagnosed with autonomic dysfunction (don't what "flavor" though) and also have low B12. When I first started getting sick, I only had bouts of nighttime tachycardia. My PCP checked B12 because I also have Hashimoto's and she said B12 and Vitamin D deficiencies frequently go hand in hand with thyroid issues. I believe it's thought the body burns through more B12 when it's under stress - so clearly anything autoimmune, POTS, etc could contribute to that. 

Not to mention the absorption issues you touched on. I actually just finished once a month X 3 months injections and my B12 was still low. I'm now doing another 3 months of them and adding in B12 sublinguals. My PCP said I may just be one of those people who will need injections for life. Interestingly, my B12 was 1000 back in January 2016, so you can see how absorption and/or body needs and usage change over time. 

[MomtoGiuliana]

Thank you @dizzytizzy.  That is interesting about the nighttime tachycardia bc I have been experiencing that as well.  I wear a fit bit which might be the only reason I started noticing it.  I noticed that over the last few months my nighttime hr was rising.  Even asleep my hr would be in the 80s on average--which might not be abnormal for some people but was abnormal for me.  Something about this didn't seem right to me and I was planning on mentioning to my POTS specialist when I saw him again (next week).

From what I understand B12 is stored in large amounts in the liver so it can take a long time between absorption problems starting and an actual deficiency starting to show up--unless you put great demand on B12 for some reason--eg anesthesia.  I'm still learning!  It makes sense that there are many factors involved and interacting.

[Bluebonnet08]

Very interesting - thank you for sharing!  It is interesting to me that there are research articles linking low Vitamin B-12, low ferritin, and low Vitamin D to POTs symptoms, yet not one cardiologist or autonomic specialist has mentioned it.  And I have been to 3 autonomic centers..  It seems a lot of people with POTs are very deficient in those 3 vitamins/minerals.  

It truly seems like we have to be our own advocates!  I hope the supplementation goes well.  Before I got pregnant, I was getting saline IVs and B-12 shots.  I went over a year without an attack which was the longest I had gone since I got the condition... so I do think there is something to this!  I can't wait to start the shots again after I deliver.  Keep us posted

[MomtoGiuliana]

You're welcome.  It seems some large studies on this are needed.  It surely seems worth way more investigation than has occurred so far.

@Bluebonnet08--are B12 shots not advisable during pregnancy?

[RecipeForDisaster]

I had that abnormally high for me overnight/sleeping heart rate before metoprolol too. No one thought it was a problem because it was only in the 90s but I normally run in the 60s when I'm not active... and it's hard to fall asleep otherwise!

 

i think most people with seriously low B12 feel worse after starting to supplement because the nerves are waking up again. I learned about the inability to use cyanocobalamin online and then from a doctor because I only got worse and worse from cyanocobalamin. It was actually unbearable, pain, numbness, pins, and needles worse than ever, never letting up. My levels were coming up (that doesn't mean you can utilize that B12) and we found that the cyanocobalamin was blocking my body from being able to utilize the B12 it had, or something like that. I never had worsening symptoms with methylcobalamin. 

[MomtoGiuliana]

Yes it is hard to sleep with an elevated hr.

Interesting regarding cyanocobalamin.  I think I read that cyanocobalamin has to go through a complex process in the blood and if certain molecules are not available this doesn't happen.

[dizzytizzy]

@MomtoGiuliana - I wear a Fitbit now too! Sometimes I have to take a break from it though because I feel like I start to obsess about the numbers and that doesn't do me any favors. The heart rate increase would wake me up. HR would usually be in the mid-80s and would just feel like it was pounding hard. Within about 10 seconds of my waking, it would start to increase - usually up to about 160 bpms. The first few times this happened, I landed in the ER because I thought I was having a heart attack or something. The ER said it was anxiety 😡 Once I met with the EP, he informed me about vagal maneuvers and those worked to slow it back down.  

Most of these episodes occurred between 4-6am. My EP now believes that these were due to stress hormones. Since things like cortisol and adrenaline start to naturally rise around those early morning hours, my body was reacting abnormally to this normal occurrence. He thinks my body was also relying on stress hormones to maintain a steady BP so it was likely that I had higher levels of these hormones to begin with too. Add in the early morning rise that is supposed to happen, and my heart just freaked from the abundance of hormones. 

Hope that makes sense. Definitely worth asking your doc about. I haven't had any more of those early morning episodes since upping salt/water intake and taking midodrine. 

RE: vitamin deficiencies. I've frequently been deficient in B12 and vitamin D. Ferritin has actually been good, but iron saturation has been on the low side.

[firewatcher]

I was also tested several years ago and found that my B, D and ferritin levels were low. I'd been on multi-B supplements before and felt worse with an increase in tremors. This got MUCH worse for me after B12 injections, so I quit. My doc supplemented vitamin D too (at prescription levels) and I ended up having worse migraines. I also took iron to bring my ferritin back up. I'm not sure if the deficiencies are "chicken or egg" with us. Are they low because of POTS or do we have POTS because they are low? I feel better off of the vitamins.  Who knows? I dunno.

 

[MomtoGiuliana]

@dizzytizzy I agree regarding fit bit and overly focusing on heart rate.  I am glad fit bit was not around 15 years ago when I was very sick and very aware of my hr.  Until recently I have really not paid much attention to hr and been using it to count steps, remind me to move, and just our of curiously monitoring my sleep.

@firewatcherSo interesting.  I do wonder if we just are very sensitive to changes in our bodies.  In general I have avoided supplements, other than iron.  I am skeptical about vitamins in general and have felt it better to focus on actual diet.  Something is definitely going on with me as I am the most POTS-y I have been for years. 

[Pistol]

@MomtoGiuliana - I always thought my vitamin levels were good because I eat a very good diet . B12 I cannot absorb in my GI tract, so I take the shots and I never felt bad on them. Vit D was low but I believe that is because I cannot be outside long and do not get adequate sun exposure to make it myself. Feel soooo much better since taking 50,000 units weekly for 2 months then 2000 units daily. And liquid iron has been helping me too, although I just started that 2 weeks ago. I feel that many of us do not absorb the needed vitamins despite a rich diet, that is why supplementation is needed. But I have one piece of advice: it is important to take good quality supplements!!! Not all supplements get absorbed the same depending on their composition. I personally prefer IM, sq or sublingual if possible. 

[RecipeForDisaster]

Anyone who felt worse on cyanocobalamin could always try sublingual methylcobalamin. It really can't hurt and might safely replenish your levels. I went from 120 to 1440 with just sublingual. That is really similar to direct into the bloodstream. I only have minor numbness and tingling now, and I don't know if that is my neck/shoulders or neuropathy or B12 but it's livable.

The cyano part can't always be cleaved off for you to use the -cobalamin, which is more common than previously thought. Somehow that makes you feel like you have - no- B12 because the cyanocobalamin takes up a receptor without being useful-something along those lines. It was horrendous for me but many people tolerate it just fine.

Whenever I'm out, I wear sunscreen, so I wasn't surprised my D was low. I was on 50,000 weekly for a while and am now taking 2000-3000 daily because I think this form of vitamin d is better. I have a very good diet, too. Just no meat.

@dizzytizzy my tachycardia is always worst at 2-3am but I go to bed pretty early and normally get up at 5:30-6am, so maybe I'm a little off? The pounding is so awful that it doesn't matter what my rate is. I think that part is not understandable by my doctors. "Oh your heart rate is in the 80s, that's good"! But I can literally see my heartbeat through my clothes.... I had ACTH stimulation test but it was done at 4pm so who knows if that means anything. It was okay. My renin was high and my aldosterone was 7 sitting up in the morning. I'm waiting on my vasopressin results... the endocrinologist, years ago, sad I was all set on his end, but I'm worse now and he's mysteriously not practicing now. I'm not so sure.

[MomtoGiuliana]

Thank you @Pistol

@RecipeForDisaster Interesting.  I guess there is no way to know if a person can use cyanocobalamin except by trying.  I am taking methyl orally as well.  Hope you get answers soon and start to feel better.

[dizzytizzy]

@RecipeForDisaster: Yes! My 6 y/o sleeps in my bed and she'll say, "Mama, I can't go to sleep. Your heart beat is shaking the bed." Cue internal freakout on my end! It feels like it rocks my whole body sometimes and if I hold my phone or book on my chest, it moves to the beat too. I've been checking my BP/HR when this happens and they're not abnormally high, so who knows what the heck is going on. 

I've never had renin or aldosterone tested. When I first got sick, my cortisol was elevated, but we chalked it up to the stress of the sickness. Still debating about going through a wider range of autonomic testing - recently posted a topic about the pros and cons of doing so. 

[RecipeForDisaster]

My laptop screen bounces along with my heartbeat. I'm always told to just ignore it but if you are getting bumped hard all the time, apparently, it's not something you can get used to. It doesn't make sense that a hypotensive person has such a pounding heartbeat until you think about a heart that is mostly empty (which is how I feel, that I don't have any blood) smacking each beat out.

 

I'm completely undiagnosed by the way. Interesting findings come up with vitamins, hormones, positive ANA, etc. but no answers, still. Two TTTs, one done totally wrong (painful biopsy during it!) and one at the beginning of my journey when I was doing a lot better I doubt I'll do a third, I'm getting dysautonomia treatment anyway and it sure sounds like that's part of it. 

[DizzyPopcorn]

23 hours ago, dizzytizzy said:

Yes! My 6 y/o sleeps in my bed and she'll say, "Mama, I can't go to sleep. Your heart beat is shaking the bed." Cue internal freakout on my end! It feels like it rocks my whole body sometimes and if I hold my phone or book on my chest, it moves to the beat too. I've been checking my BP/HR when this happens and they're not abnormally high, so who knows what the heck is going on. 

Wait, isn't this normal???

My entire bed is not shaking, but if i put something on my stomach, regardless of hr / blood pressure, it will move a little bit with each beats. Completly normal. We aren't cold rocks.