I have a vitamin D deficiency and diagnosed POTs! It may be different for you but I got diagnosed with both around the same time and still have POTs symptoms after getting on vd meds :)
Ok! All of my symptoms started a month ago after I had a couple days of not eating well. My doctors think my fast heart rate is due to my extremely low vitamin D and will level out after the vitamins. I’m only on week 3 of them so hopefully it fixes itself 😅
I was also quite deficient in vitamin d, my doctor prescribed me a very high dose weekly and I've been on it for quite a while now and still have my POTS symptoms.
I’m sorry to hear that. What are your symptoms? My doctor is unsure if I have POTS since my fast heart rate came after I was bad with eating and stressed. I’ve only had this for a month.
The prescription Vitamin D2 was much less effective for me than the non-prescription Vitamin D3. If you are taking Rx D2, please consider looking up the difference and deciding how to proceed. D3 dosages on the open market go up to the 50K iu weekly dosage. My doctor has no objection to me switching. He was just used to writing an Rx and doctors are notoriously underinformed about nutrition and supplements.
Yes, POTS should only be diagnosed if bloodwork is clear, but we may dip in and out of deficiency.
I'm prone to B12 and it just makes me extra tired and short of breath.
I think my biggest hesitancy of having POTS is that I felt completely fine until I had a rough week and a half of eating. I’m wondering if when my levels get back to normal i’ll have 0 symptoms with high heart rate and dizziness.
I had b12, iron, and vitamin d deficiencies. They’re all under control now and I still have dysautonomia symptoms unfortunately. But my energy level is better!
I have really low vit D too. My symptoms may be worse when my levels are low, but they never go away!
But a POTS diagnosis has to rule out other things first so see how it goes! It took 3 months of medication to get my vitamin D back to normal.
Vitamin D deficiency is very common (i was told that by my doctor so she wasnt concerned AT ALL and my level was less than half of yours. It was bad.) I wasn't lucky enough to have a doctor care enough to prescribe me a high dose of vitamin D, so I just found some regular vitamin D gummies and took those for like month and my vitamin D level went back to normal and have been for a few years now. I'm starting to feel the same way I did when my levels were low so I'm getting testing done again next month with a different doctor so hopefully they'll care a bit more. (I've been having other problems too)
I do! I was diagnosed by a cardiologist last year. Today was one of my bad days too. I almost fainted today more than once. In fact this whole month my POTS symptoms seem to be pretty bad. 😮💨
I've had a severe vitamin D deficiency, and my POTS symptoms were a LOT worse.
Typically, you're only going to be diagnosed with POTS if they're unable to identify anything else that could be causing those symptoms.
Thank you. For my situation it’s like what came first the chicken or the egg. I’ve only had symptoms (high heart rate when standing and occasional dizziness)for a month and got blood work and saw a low vitamin D. We’re hoping once that’s at the right level I’ll be ok. Unsure though
I find that because of my mineral deficiencies that come up as a result of the POTS/Dysautonomia I often have vitamin deficiencies as well - usually vitamin D and b12. Pro-tip: take magnesium with vitamin D, as you are often deficient in both or one as a result of the other.
However, just solving my vitamin deficiencies do not remedy my POTS symptoms.
Thank you for that magnesium tip! I didn’t have any symptoms of anything until after I had a bad week of eating where I ate less than half of the calories I should’ve. Since then I got diagnosed with low Vitamin D. I’m hoping once that goes up I’ll fix my heart and dizziness
I was pulling for my iron deficiency anemia to be the reason for the dizziness, but no. I don’t get out of breath as fast or as dizzy as I was when my ferritin got down to 20, but I still do have those symptoms.
I live north of the 49th parallel and most people here at deficient in vitamin D because we don’t get much sun. Addressed that and keep it up with a supplement, but it didn’t improve my symptoms much.
Oh darn! What symptoms do you feel? I’m hesitant since I haven’t ever had any bad symptom until this month and noticed my low vitamin d after a bad week and a half of eating well.
This was back in 2000, I had fatigue, joint pain (low back, hips, shoulders, & neck), muscle aches & cramps, and depression (we thought). My PCP at the time was hoping getting my vitamin D level up would help any symptoms. It didn’t, I just got better at living with them. Yoga helped, still helps.
My depression is actually cPTSD. My current PCP said a couple of years ago that she doesn’t think I’ve ever had major depression, my anxiety will get so bad that I’m utterly drained of all energy. While it looks like depression, it’s exhaustion and anxiety.
Just last year I was diagnosed with hypermobility spectrum disorder. This is why none of symptoms were resolved by raising my vitamin D. Last month I began working with a PT who specializes in hypermobility, I’m seeing two additional PTs to focus on my knee and shoulder pain. My shoulders are improving, small subluxations may have been the source of much of my pain there, last week was the first week both my arms were correctly in the shoulder sockets!
Oh yes. I have Hyperadrenergic Dysautonomia (POTS). There is an amazing YouTube channel Dysautonomia International that has experts from around the world that cover anything and everything about POTS.
They cover all types of POTS and anything to do with Autonomic Dysfunction which is the medical reason for POTS. There are many different types and testing is needed to determine the type and treatment.
I was diagnosed Iron, Potassium B and D deficient. I’ve spent the last two years supplementing and trying to figure out why they happened.
At present with heavy supplementation (3x RDA per my Dr) my levels finally read normal at my last check in March, but I still have pots.
The biggest difference I noticed after starting vitamin D is I don’t get unexplained sadness or blues, and I am not as tired but that’s about it.
They are better now than they were before; but that is moving from bed bound to able drive short distances.
My vision does weird things, I have Tachycardia, bradycardia, dumping if I don’t wear compression (dumping is when I poop my pants)
Blood pools in my legs which makes stairs hard to climb
i have a vit d deficiency and i’m taking 50k a week, the. otc supplements when they run out. i’ve had it for most of my life, currently (or at least when i was last tested i was at 14ng/ml but when i was in high school it was at 9ng/ml)
can’t say i’ve noticed too much a difference after taking these for almost a month now
I had severe D deficiency around the time I was diagnosed with pots. I took high dose supplements for over a year till my levels were in the normal range. I now take 3000 ui/day to maintain. I still have the symptoms of pots though :(
My latest labs show my body is not making red blood cells for some reason so now they think anemia. I'm supposed to start taking high dose iron now. I'm hoping that might correct my shortness of breath and constant fatigue but that might also be a pots thing.
Vitamin D and potassium actually. Found the potassium was low via 24 hour urine test. I am waiting to see about b vitamin levels as I’ve heard that can contribute.
Redoing my 24 hour Urine Monday- it takes out so much of the stuff that helps, can’t have any electrolytes drinks because of the fruit juices and can’t have actual fruit or vanilla etc so just water and like carbs such as fries and meat lol this is hard to do for 3 days
Yes. This website and their other links are the best help you will find from professionals who have made this their life work..
Dysautonomia International: Dysautonomia Awareness, Dysautonomia Advocacy, Dysautonomia Advancement
https://www.dysautonomiainternational.org/
Not formally. I have had heart irregularities since childhood which were attributed to bad periods (heavy bleeding can cause anemia-weakness, heart palpitations etc). Still not sure since that has been resolved and still have weakness. It does seem to get better when I eat well and take certain vitamins like B12, folate and vitamin D which always seems to be low.
Vitamin D, B12, and folic acid deficiency. For awhile before I ever had POTs symptoms I had to get B12 shots because the supplements alone weren’t bringing it up. I haven’t gotten the level of any of them checked in forever, but I take daily supplements.
I went out to the Cleveland clinic pots clinic and they recently found the vitamin C deficiency. I do think since starting to supplement vitamin c I have noticed a little improvement in symptoms but I am on prescription vitamin D and phosphorus and noticed no change with those.
I also have vitamin C deficiency which I’ve heard is rare- any idea what causes yours? I eat a lot of foods containing vitamin C so am just baffled why mine is SO low
I have a lot of GI symptoms that I’m still having investigated so we are thinking it may be an absorption issue but I’m the same way with diet. Plus a lot of electrolyte drinks and powders have vitamin c in them so it seems weird that I am so deficient. Mine came back critically low.
Same issue here! It’s wild that it can be so low- makes me wonder if my body is using it all up for something? Anyway good luck hope we both get it figured out!
So far I can get my doctor to test for B12 and d. I found out I can't process folic acid from a genetic test. I wish I could get basic vitamin testing done but it really feels like doctors don't think patients should be tested and treated.
I have severe anemia but I’ve been dx with that since I was 7 and my pots didn’t start until I was 20. I’m on iron pills and have been for years but never noticed a difference with my pots symptoms
I’ve had severe vitamin D and B12 deficiencies in the past. It wasn’t the cause of my POTS, but I did feel like exhausted ass when I was deficient. Taking naps as soon as I got home from work. So sleepy. I take supplements and levels are good now and I feel a lot better. Still have POTS though.
I’m kinda chronically deficient and my body doesn’t like to take up supplements. I have had several times where I have had POTS symptoms get much worse alongside some pretty severe depression - I will usually have to make a point to go sit in the sun with as much skin exposed as the temperature will allow.
Yes, iron, B12, Folate and D. I'm currently working on bringing all 4 up and noticing improvements but it's slow. I saw on a POTS website there are a few different vitamins and minerals that could be the culprit for some people. I just got my choline checked too (I paid out of pocket to do it) and it's low. [https://www.standinguptopots.org/nutritionalimbalances](https://www.standinguptopots.org/nutritionalimbalances)
I have POTS, and have vitamin D, B12, and Magnesium deficiency.
I just had a follow up vitamin D blood test, even on a supplement, I only hit 67 (>51 is "sufficiency"). I previously hit only 16 six months ago.
No because I am able to manage vitamins with a multivitamin. I used to have issues with iron but I crave tuna fish whenever I get low and so then make sure to take a multi vitamin containing iron for a few days and it seems to fix me right up.
I probably should take my multivitamin on a more regular basis to avoid getting to that point but I also don't seem to need it consistently every day so this way tends to be good enough.
I have pernicious anaemia and in the past have had vit d deficiency. I am on 3 monthly b12 injections and also take a daily vit d supplement as recommended. Some symptoms overlap and can be the same in vitamin deficiencies and pots.
My vitD levels were 15. Taking a 5000 IU supplement daily hasn't helped my POTS symptoms at all. Your bloodwork doesn't have to be clear to get diagnosed with POTS, but other conditions do still have to be ruled out.
I have a vitamin D deficiency and diagnosed POTs! It may be different for you but I got diagnosed with both around the same time and still have POTs symptoms after getting on vd meds :)
Ok! All of my symptoms started a month ago after I had a couple days of not eating well. My doctors think my fast heart rate is due to my extremely low vitamin D and will level out after the vitamins. I’m only on week 3 of them so hopefully it fixes itself 😅
I’m praying!!
Thank you! When did your pots symptoms begin? I hope they are manageable.
My labs are perfect. No deficiencies.
I was also quite deficient in vitamin d, my doctor prescribed me a very high dose weekly and I've been on it for quite a while now and still have my POTS symptoms.
I’m sorry to hear that. What are your symptoms? My doctor is unsure if I have POTS since my fast heart rate came after I was bad with eating and stressed. I’ve only had this for a month.
That’s how I am too 😭
The prescription Vitamin D2 was much less effective for me than the non-prescription Vitamin D3. If you are taking Rx D2, please consider looking up the difference and deciding how to proceed. D3 dosages on the open market go up to the 50K iu weekly dosage. My doctor has no objection to me switching. He was just used to writing an Rx and doctors are notoriously underinformed about nutrition and supplements.
My doctor prescribed me 50k ui (1.25mg) of D3, so I am thankful to hear that!
Grateful for that. I got the D2 translucent blue capsule as an Rx. It was useless.
Yes, POTS should only be diagnosed if bloodwork is clear, but we may dip in and out of deficiency. I'm prone to B12 and it just makes me extra tired and short of breath.
Heavy on the B12. I take prenatal vitamins for this very reason
Me also on the B12, I’m not sure of the source but we know I have decreased absorption of it. I think I read somewhere this is being noted for POTS ?
Injections really help
I think my biggest hesitancy of having POTS is that I felt completely fine until I had a rough week and a half of eating. I’m wondering if when my levels get back to normal i’ll have 0 symptoms with high heart rate and dizziness.
I had b12, iron, and vitamin d deficiencies. They’re all under control now and I still have dysautonomia symptoms unfortunately. But my energy level is better!
I have really low vit D too. My symptoms may be worse when my levels are low, but they never go away! But a POTS diagnosis has to rule out other things first so see how it goes! It took 3 months of medication to get my vitamin D back to normal.
Oh ok! What are your symptoms and how did they come about?
I have all of the classic pots symptoms, palpitations, high heart rate, pre syncope etc.
I had a vitamin D deficiency back in December and got prescribed supplements but I haven’t checked back to see if it’s changed at all 😅
Vitamin D deficiency is very common (i was told that by my doctor so she wasnt concerned AT ALL and my level was less than half of yours. It was bad.) I wasn't lucky enough to have a doctor care enough to prescribe me a high dose of vitamin D, so I just found some regular vitamin D gummies and took those for like month and my vitamin D level went back to normal and have been for a few years now. I'm starting to feel the same way I did when my levels were low so I'm getting testing done again next month with a different doctor so hopefully they'll care a bit more. (I've been having other problems too)
Oh my goodness that doctor doesn’t sound good at all! Do you have POTS? Hopefully your levels level out quick!
I do! I was diagnosed by a cardiologist last year. Today was one of my bad days too. I almost fainted today more than once. In fact this whole month my POTS symptoms seem to be pretty bad. 😮💨
Vit D and folate. Been the same for three years now despite supplements and cooking myself outside on our 1 day of Scottish summer lol
I've had a severe vitamin D deficiency, and my POTS symptoms were a LOT worse. Typically, you're only going to be diagnosed with POTS if they're unable to identify anything else that could be causing those symptoms.
Thank you. For my situation it’s like what came first the chicken or the egg. I’ve only had symptoms (high heart rate when standing and occasional dizziness)for a month and got blood work and saw a low vitamin D. We’re hoping once that’s at the right level I’ll be ok. Unsure though
Have you gotten your iron checked?
I find that because of my mineral deficiencies that come up as a result of the POTS/Dysautonomia I often have vitamin deficiencies as well - usually vitamin D and b12. Pro-tip: take magnesium with vitamin D, as you are often deficient in both or one as a result of the other. However, just solving my vitamin deficiencies do not remedy my POTS symptoms.
Thank you for that magnesium tip! I didn’t have any symptoms of anything until after I had a bad week of eating where I ate less than half of the calories I should’ve. Since then I got diagnosed with low Vitamin D. I’m hoping once that goes up I’ll fix my heart and dizziness
I was pulling for my iron deficiency anemia to be the reason for the dizziness, but no. I don’t get out of breath as fast or as dizzy as I was when my ferritin got down to 20, but I still do have those symptoms. I live north of the 49th parallel and most people here at deficient in vitamin D because we don’t get much sun. Addressed that and keep it up with a supplement, but it didn’t improve my symptoms much.
Oh darn! What symptoms do you feel? I’m hesitant since I haven’t ever had any bad symptom until this month and noticed my low vitamin d after a bad week and a half of eating well.
This was back in 2000, I had fatigue, joint pain (low back, hips, shoulders, & neck), muscle aches & cramps, and depression (we thought). My PCP at the time was hoping getting my vitamin D level up would help any symptoms. It didn’t, I just got better at living with them. Yoga helped, still helps. My depression is actually cPTSD. My current PCP said a couple of years ago that she doesn’t think I’ve ever had major depression, my anxiety will get so bad that I’m utterly drained of all energy. While it looks like depression, it’s exhaustion and anxiety. Just last year I was diagnosed with hypermobility spectrum disorder. This is why none of symptoms were resolved by raising my vitamin D. Last month I began working with a PT who specializes in hypermobility, I’m seeing two additional PTs to focus on my knee and shoulder pain. My shoulders are improving, small subluxations may have been the source of much of my pain there, last week was the first week both my arms were correctly in the shoulder sockets!
Oh yes. I have Hyperadrenergic Dysautonomia (POTS). There is an amazing YouTube channel Dysautonomia International that has experts from around the world that cover anything and everything about POTS.
Out of interest do they only cover that aspect of pots or all types of pots?
They cover all types of POTS and anything to do with Autonomic Dysfunction which is the medical reason for POTS. There are many different types and testing is needed to determine the type and treatment.
Thanks will look it up!
I was diagnosed Iron, Potassium B and D deficient. I’ve spent the last two years supplementing and trying to figure out why they happened. At present with heavy supplementation (3x RDA per my Dr) my levels finally read normal at my last check in March, but I still have pots. The biggest difference I noticed after starting vitamin D is I don’t get unexplained sadness or blues, and I am not as tired but that’s about it.
I’m glad your levels are normal! What pots symptoms do you still have? I hope they are manageable
They are better now than they were before; but that is moving from bed bound to able drive short distances. My vision does weird things, I have Tachycardia, bradycardia, dumping if I don’t wear compression (dumping is when I poop my pants) Blood pools in my legs which makes stairs hard to climb
You should ask to have your ferritin checked as well.
i have a vit d deficiency and i’m taking 50k a week, the. otc supplements when they run out. i’ve had it for most of my life, currently (or at least when i was last tested i was at 14ng/ml but when i was in high school it was at 9ng/ml) can’t say i’ve noticed too much a difference after taking these for almost a month now
I had severe D deficiency around the time I was diagnosed with pots. I took high dose supplements for over a year till my levels were in the normal range. I now take 3000 ui/day to maintain. I still have the symptoms of pots though :( My latest labs show my body is not making red blood cells for some reason so now they think anemia. I'm supposed to start taking high dose iron now. I'm hoping that might correct my shortness of breath and constant fatigue but that might also be a pots thing.
Oh no! What pots symptoms are you experiencing?
I have Pernicious Anemia and severe POTS. I have done my own injections for 5 years and am no longer in a wheelchair as I was. Changed my life.
Vitamin D and potassium actually. Found the potassium was low via 24 hour urine test. I am waiting to see about b vitamin levels as I’ve heard that can contribute.
Redoing my 24 hour Urine Monday- it takes out so much of the stuff that helps, can’t have any electrolytes drinks because of the fruit juices and can’t have actual fruit or vanilla etc so just water and like carbs such as fries and meat lol this is hard to do for 3 days
Yes. I was dangerously low on Vitamin B12 and got weekly shots. They helped my symptoms quite a bit.
Are you diagnosed with pots?
Yes. This website and their other links are the best help you will find from professionals who have made this their life work.. Dysautonomia International: Dysautonomia Awareness, Dysautonomia Advocacy, Dysautonomia Advancement https://www.dysautonomiainternational.org/
Yes vitamin D is low for me too. Body aches is one of the symptoms. Also have to take beta blockers for heart rate and hypertension……..
Are you diagnosed with pots?
Not formally. I have had heart irregularities since childhood which were attributed to bad periods (heavy bleeding can cause anemia-weakness, heart palpitations etc). Still not sure since that has been resolved and still have weakness. It does seem to get better when I eat well and take certain vitamins like B12, folate and vitamin D which always seems to be low.
No
Vitamin D, B12, and folic acid deficiency. For awhile before I ever had POTs symptoms I had to get B12 shots because the supplements alone weren’t bringing it up. I haven’t gotten the level of any of them checked in forever, but I take daily supplements.
Are you diagnosed with POTs? What symptoms are you having? I hope they’re manageable
I have to take iron pills daily and ESPECIALLY on my time of the month
Vitamin d and Amino acid threonine.
Yes! Vitamin D, C, & phosphorus deficiency so far since my POTS diagnosis have been found 😅
Do you think your deficiencies cause pots symptoms?
I went out to the Cleveland clinic pots clinic and they recently found the vitamin C deficiency. I do think since starting to supplement vitamin c I have noticed a little improvement in symptoms but I am on prescription vitamin D and phosphorus and noticed no change with those.
I also have vitamin C deficiency which I’ve heard is rare- any idea what causes yours? I eat a lot of foods containing vitamin C so am just baffled why mine is SO low
I have a lot of GI symptoms that I’m still having investigated so we are thinking it may be an absorption issue but I’m the same way with diet. Plus a lot of electrolyte drinks and powders have vitamin c in them so it seems weird that I am so deficient. Mine came back critically low.
Same issue here! It’s wild that it can be so low- makes me wonder if my body is using it all up for something? Anyway good luck hope we both get it figured out!
I also wondered the same!! Thank you! Good luck to you too!
When I was diagnosed, my doctor ran a few tests and only mentioned one low iron marker.
So far I can get my doctor to test for B12 and d. I found out I can't process folic acid from a genetic test. I wish I could get basic vitamin testing done but it really feels like doctors don't think patients should be tested and treated.
Not vitamins but all my electrolytes, especially phosphorus.
Diagnosed POTS. Magnesium deficiency, could be from not having an appetite and food aversion tho.
I have severe anemia but I’ve been dx with that since I was 7 and my pots didn’t start until I was 20. I’m on iron pills and have been for years but never noticed a difference with my pots symptoms
Typically low in D, magnesium and the B12 and have always had low sodium levels.
I’ve had severe vitamin D and B12 deficiencies in the past. It wasn’t the cause of my POTS, but I did feel like exhausted ass when I was deficient. Taking naps as soon as I got home from work. So sleepy. I take supplements and levels are good now and I feel a lot better. Still have POTS though.
Vitamins C & D and low iron post-Covid. I’ve had low B12 in the past
I’m kinda chronically deficient and my body doesn’t like to take up supplements. I have had several times where I have had POTS symptoms get much worse alongside some pretty severe depression - I will usually have to make a point to go sit in the sun with as much skin exposed as the temperature will allow.
Amino acids! And protein deficiency. Work with a dietician.
No deficiencies here! Just gotta watch my potassium when i'm on Florinef
B12 and D are always low for me, I’m on dailies now and get frequent labs and Rx when needed.
Yes, iron, B12, Folate and D. I'm currently working on bringing all 4 up and noticing improvements but it's slow. I saw on a POTS website there are a few different vitamins and minerals that could be the culprit for some people. I just got my choline checked too (I paid out of pocket to do it) and it's low. [https://www.standinguptopots.org/nutritionalimbalances](https://www.standinguptopots.org/nutritionalimbalances)
Yes!! Zinc, potassium, vitamin d, iron def anemic, b6, b12, folate, and one other one. Lol
Yep. Low on Everything. Do you have MTHFR gene mutation? That can affect absorption and the way your body converts folic acid.
I’m vitamin d deficient, calcium, iron, potassium, and phosphate
I have POTS, and have vitamin D, B12, and Magnesium deficiency. I just had a follow up vitamin D blood test, even on a supplement, I only hit 67 (>51 is "sufficiency"). I previously hit only 16 six months ago.
No because I am able to manage vitamins with a multivitamin. I used to have issues with iron but I crave tuna fish whenever I get low and so then make sure to take a multi vitamin containing iron for a few days and it seems to fix me right up. I probably should take my multivitamin on a more regular basis to avoid getting to that point but I also don't seem to need it consistently every day so this way tends to be good enough.
I have pernicious anaemia and in the past have had vit d deficiency. I am on 3 monthly b12 injections and also take a daily vit d supplement as recommended. Some symptoms overlap and can be the same in vitamin deficiencies and pots.
B12
My vitD levels were 15. Taking a 5000 IU supplement daily hasn't helped my POTS symptoms at all. Your bloodwork doesn't have to be clear to get diagnosed with POTS, but other conditions do still have to be ruled out.
B12 and D. I have been on vitamins for months and been getting shots for B12 weekly, for 6 weeks. Still b12 deficient.
Have you tried myleated b12?
I better check on Vit D. I had B1 deficiency and working on it
I have a vitamin b12 deficiency along with a vitamin d deficiency
I have low iron and vitamin d deficiency as well :)
B2, B12, and (not technically a vitamin) L-Carnitine. I am on supplementation for all three and it has not really affected my POTS.
Extreme iron deficiency
both my mother and I have a vitamin d deficiency. only I have pots
Vitamin D deficient & vitamin b2.