Vitamin deficiency and POTS

[dingusgirl]

I haven’t been diagnosed with POTS so let me start there. Just got diagnosed with Vit D and vit b12 deficiency a little over a week ago. I have since been supplementing. I’ve noticed the last few days, not every time but more than once a day, when I get up to walk around my hr gets really elevated. Today it got up to 124. But when I sit down, it goes back to normal. My normal resting hr is in the 60s. Anyone else experiencing this???!?

[Foggyme Administrator]

Hi dingusgirl1.

This may be a symptom of postural orthostatic tachycardia syndrome which results in raised heartbeat when standing and moving around and typically reverts to normal when sitting.

Here's more information about POTS:

potsuk.org

B12 deficiency can cause problems with the autonomic nerves and macrocytic aneamia (large red blood cells sometimes present with B12 deficiency) can also have this effect. If you are also experiencing palpitations this may be because of an initial drop in potassium levels when B12 therapy commenced (this usually only happens when macrocytic anaemia is present). Eating a potassium rich diet may help but if you do experience palpitations and these get worse, see your doctor, who may (should) want to check,your potassium levels.

Iron deficiency anaemia can also cause such symptoms - have you had you ferritin levels checked?

About the recently diagnosed B12 deficiency - if you’re in the U.K., this should be treated with B12 injections, though I understand that the USA (and other places) often try supplements first. So...if outside the U.K. and being treated with supplements...speak doctor about having injections if the supplements are not effective and symptoms persist or progress (especially if neurological symptoms are present.

Good luck 🤞

[Nackapan]

They sound like the symptoms of the beginnings of POTS perhaps caused by B12 defiency I don't know. What has the doctor said? It is hard to diagnose as your hr may not go up the required 30 beats above your resting hr on the standing test when you with the doctor. Are you drinking alot of water before you move? Try clenching your calf's before you get up as it might help. Have anxiety feelings or chest pain. Write down your symptoms. Go back to the doctor. A 24hr bp monitor can be used. I'm new to b12 defiency and personally have not had those symptoms with vit D defiency either.

When your B12 and vit D are addressed in the right way I really hope the autonomic symptoms go. I wish you well.

[Plucky1976]

I had strange hr issues in the beginning, before starting injections. No one could

Figure out why my hr was all over the place. Even hooked up to a monitor for 3 days while in hospital. It would fluctuate on standing and sitting. I’d be asleep and my hr would wake me up. From in the 80’s to 160 in the blink of an eye. Since treatment of b12 along with vitamin D and keeping my potassium, magnesium and phosphate levels up I feel like a different person. When my b12 was low I had an issue with potassium and phosphate dipping. Once my b12 and vitamin D came up the heart issues disappeared. Magnesium is great for this as well.

[dingusgirl in reply to Plucky1976]

Sounds exactly like me. And my anxiety sure doesn’t help with my hr. I’m only on supplements right now but have a call in to dr bc it seems I have gotten a little worse with some symptoms but better with others. Hoping she will at least try me on injections to see if it helps more than just supplements. Just seems too much of a coincidence for hr rate issues to be some prominent at the start of all this. Thank you so very much for your response. Helps to know someone else is experiencing the same symptoms but also heartbreaking bc this battle is no joke. Hope all is well!!

[Plucky1976 in reply to dingusgirl]

I don’t wish the way I felt last year on my worst enemy! I literally thought I was going to die! You will feel better....just have patience. Keep an eye on all of the levels that Foggyme mentioned. Epsom salt baths are a wonderful thing. Just make sure you are in there long enough.

[dingusgirl in reply to Plucky1976]

That’s how I feel. It’s horrible. I know I’m not doing the right thing but I’m so new to all of this, I don’t know what to. I don’t feel like my supplements are right. But going to the dr Thursday and will find out all I can then. I’ve seen a lot about epsom baths. What’s the deal with those? What do I need to get and how long? Sorry for the specifics but I need all the help I can get.

[Plucky1976]

The magnesium in it helps with anxiety, hr etc. I do 2 cups in the bath for 40 mins usually 3 times per week. I started out with injections but it seems docs can’t get their stuff together so it was a lot of hit and miss. One wanted to treat me with one injection weekly for 6 weeks. Another with 3 injections for 1 week the one weekly for a month then....it was ridiculous! 3 days after an injection I felt worse than before I started injections at all. I did enough research on my own to know that they had no clue what they were doing. I informed my doc that I was going to be supplementing every Monday, Wednesday and Friday until I stopped feeling better. I tried going down to 2 but my body wasn’t having it. I did a year and 1 month of that regimen and this is now the second week of having only 1 injection. I’m not sure yet but it’s not too bad. It took me a long time to get it right and even now there are times that I know something is off. I never in my life had an issue with iron or ferritin but I guess once my b12 started coming up the iron was finally able to be used correctly and I got a little low. This forum is great and the people are very informative and knowledgeable. Physicians just don’t know enough about it unfortunately.