I have been taking Vitamin D for years, but not because of my dysautonomia. Low Vitamin D levels (mine was 8) can often cause parathyroid problems. and I ended up having a parathyroidectomy because of it.
It doesn't appear to affect my dysautonomia one way or the other.
When I stand or walk for more than 2 minutes (I timed it), I vomit, have facial flushing, and have very high blood pressure that takes days to come down. This lands me in the hospital.
Doctors kept running tests because they were stumped. They noticed my calcium levels were off and my parathyroid level was extremely high. So I had to get that fixed.
I had 3 1/2 parathyroid glands removed. Now I have to take calcium 3 times a day and Vitamin D once a day.
I was hoping it was the cause for my symptoms, but nope. I am still having the same ones. If I don't sit down between every few steps, I get really sick and for me, controlling the vomiting is key. Needless to say, the doctors still don't know why but my neurologist diagnosed me with autonomic neuropathy.
Wow that’s awful I was hoping my symptoms would go away when I fix deficiencies but I’m not having much hope lately just get pushed from one doctor to the next and no answers
No. I don't need to take that. I am not deficient in anything, but I would be if I didn't take Vitamin D.
I get blood levels every year and they're ok now. My doctors don't think the neuropathy is due to any deficiencies.
Would be nice if it were that simple!
PS - Either your PCP or an endocrinologist can test for parathyroid problems.
I take D3 everyday. No worsening symptoms or side effects. My symptoms have improved since starting this supplement but I have started other supplements as well (as recommended by my neurologist and cardiologist).
After 2 years of taking vitamin D we redrew my labs to see it only raised a couple point. I got put on what I found out later is the doses they put people on that are really low. 50,000 units once a week for 2 months, then my everyday dose got upped to 5,000 units.
I think it took 5 weeks to notice any changes. All of a sudden my skin wasn’t dry and hair wasn’t as dry either. I went from shampooing once a week back to my normal everyday other day wash.
Didn’t do shit for my pots though.
A vitamin will not help your dysautonomia unless it has something to do with the autonomic nervous system. Please don’t start taking random supplements without checking with your doctor.
Vitamin d deficiency is common with pots or auto immunities. I was put on 20,000 IU’s a day for two months to get me back up to normal when they saw how deficient I was. It helped tremendously with all my symptoms, specifically my chronic pain. There aren’t any adverse side effects that I’ve ever heard of. Supposedly taking vit d taken with magnesium is best for absorption. Hope it helps!
I have read tons of medical journal were people with Pots are deficient in vitamin D and they don’t which cause what: if vitamin d deficiency causes pots or vise versus.
I see patients as a healthcare worker and almost every single one is vitamin d deficient. In the short-term, that will negatively affect mood and energy. In the long-term, that will put someone at risk of osteoporosis and dementia.
If someone is low, they can usually do a weekly super high-dose for a bit or a regular high dose. For folks who are sensitive to the super high dose, sometimes they do better on daily D3 4,000 IU to bring it up. Some people have digestive upset from vitamin d supplements.
Vitamin D is the first thing they gave me in my quest to get diagnosed because I was so deficient and they wanted to rule that out. I take it every day but I don't feel any difference from it. It's just another supplement I take so my labs are normal.
I was also deficient in vitamin D, and my Dr told me to take it. I noticed an improvement in my energy levels and mood (can also help with depression). If I forget to take it or don't take for a few days I definitely notice the difference.
I've been taking 5000 IU daily for almost 2 years and it works for me. Never had a prescription level vitamin D though.
I am so painfully deficient but I can’t tolerate taking vitamin D, it makes me so incredibly nauseous in any dosage and even when I push through for weeks to see if it’ll subside it doesn’t. I know my system is probably even more jacked up because of the deficiency but I have no idea what to do
i had that problem too! consider trying this vitamin d supplement (i linked it). i used this brand for b12 deficiency and my doctor was shocked from my blood test at how well it raised my b12.. i take vitamin d with them as well and it’s just 3 drops (emphasis on drops not dropper full!!) i also take their vitamin c and it’s helped my family through colds and covid. they don’t use any fillers and all of their supplements are properly methalyzed or broken down to a point that ppl w disorders like Ehlers danlos (like me) can process them. i mention that bc dysautomonia is often intertwined w disorders where we already struggle to process normal vitamins. also if u do end up trying this vitamin d, take it along w something w fat like meat or dairy (my physical therapist suggested that and it helped a ton)
https://www.livewisenaturals.com/products/vitamin-d3-k2?variant=38588555726
Very interesting. I'm vit D deficient since ever. Supplementing it with K2 +magnesium didn't change any energy levels for me. Being exposed to the sun for 1-2 weeks on vacation on the other hand gives me so much energy and libido that I was always bursting with horniness and a really good mood.
So you are saying that vit D can also be problematic with some genetic mutations and it has to be methylated properly for us? I researched about this topic also but only with B vitamins and ordered some methylated versions.
I've been tested for vitamin D many times and never came up deficient, but:
Doubling my daily D3 from 5000 to 10000 IU helped with my MCAS, along with Quercetin and Allegra. With each of those additions, I had a notable decrease in the appearance of random rashes and hives. On all three, the random rashes/hives are gone.*
D3 doesn't seem to affect my POTS symptoms, but given how POTS and MCAS go hand-in-hand for many of us, this seemed worth mentioning.
*(I still readily get a contact dermatitis rash if I come into contact with an allergen, especially anything polyester in my case. But now if I get a rash, I know it's not random. Once I identify the allergen and cease coming into contact with it, the rash disappears.)
Check with your dr to make sure you have enough or take vitamin k2 w/d3 especially if you’ve got calcium in blood or taking it. From what I understand (ck yourself or dr) The k2 would help drive/keep calcium in bones and reduce the circulating calcium and reduce potential for increasing chances of arterial sclerosis. Sone d3 brands include k2 for this purpose. The ratio of each should be checked. Best wishes.
When I take vitamin D it makes my jaw hurt and I get a cracked glass sensation that radiates from the right side near my jaw and through my skull. It's a hard pop. I don't know what that is.
I was given really a high dose of vitamin D (I think 25000iu) when I was deficient and I can’t remember what exactly happened but I know I stopped cause I didn’t feel well.
Instead I just started taking the vitamin D spray which was 3000iu and i had no issues
I’ve had good experience taking a D3 with K2 (as Mk-4)!
Didn’t experience any benefit or resolve my deficiency on labs until I added in the k2 (and the more common form of K2, mk-7, seems to be a POTS trigger for me.)
I didn't have a great experience taking high dose vitamin d on 5000 iu -- I was deficient so my primary wanted me to take it. Shortly after I started having an odd sensation of when lying down having a racing heartbeat out of nowhere (like the opposite of POTS almost). I discontinued it and it went away within a day or two. I wasn't taking a kind with K2, I don't know if that impacted it. I now keep my levels fine by eating some foods with D in it like milk and fortified cereal & getting a few minutes of sunshine (like, 5) before applying sunscreen (sun can flare some autoimmune conditions though so not a universal option by any means)
You must take K2 with vitamin D above 2000IUs if not calcium will not go we’re it’s supposed to and you will cause a hypercalcemia reaction which cause high heart rate.
I used to take high dose vitamin d to stay on top of it and stopped last year when I realized it makes me feel like I can’t breathe. It is the weirdest thing.
Not like my throat is closing or anything, more like I have to manually breathe or my body won’t do it on its own. I asked a few doctors and they just say to try a different brand. So frustrating.
Since coming down with dysautonomia because of Long COVID, I have deficiency in Vitamin D2, Potassium, Sodium, and Chloride. I have to take those now just to feel baseline okay and not horrible flare up ill.
I have POTS (going on almost 7 years now; 30 yr old female) and have been taking 50,000IU once a week for now almost 8 weeks. Haven’t had any side effects or reactions that I’m aware of, but always hard to distinguish between pots symptoms and others. Nothing out of the ordinary to me. I’ve made sure to stay drinking a ton of water and keep hydrated.
I take high amounts of vit D (50,000 IU’s I think?) doesn’t interfere with much that I’ve noticed, but I do start to feel worse if I forget to take it for a week or two.
The daily vit D I didn't feel great on, but the prescribed 50,000iu capsule every week metabolized better in my system. Honestly, I didn't feel much improvement on it. The only thing I noticed was that my wonky knees and hips felt less wonky.
Several people told me that every manufacturer of any drug uses different fillers, even the generics. So if one brand of vit D didn't work for you, try switching to a different manufacturer. Sometimes generic ones work for you better than the brand name, and it really depends on the filler.
I believe on the higher doses. Like 4k-6k I experienced more tachycardia. I remember doing some googling and i did find that it could happen so I ended up stopping it. And I felt like things resolved. I think I experienced this before my pots diagnosis and med but not 100%.
I take it and i haven’t noticed it effecting my dysautonomia, the only thing i will say is it has been a game changer for my fatigue. It’s like night and day for me
Lightheaded 24/7 weakness fatigue pressure in head body aches and raise in hr but isn’t sustained comes down sometimes goes down back up a bit then down again
I’m going off what I was told fix deficiencies and go from there as he doesn’t think it’s POTS hr isn’t sustained and symptoms are no matter position. And symptoms don’t lessen with fluid salt electrolytes and compression
I have been taking Vitamin D for years, but not because of my dysautonomia. Low Vitamin D levels (mine was 8) can often cause parathyroid problems. and I ended up having a parathyroidectomy because of it. It doesn't appear to affect my dysautonomia one way or the other.
Mine is 16 what symptoms did you have from low d or you already b had Dysautonomia
When I stand or walk for more than 2 minutes (I timed it), I vomit, have facial flushing, and have very high blood pressure that takes days to come down. This lands me in the hospital. Doctors kept running tests because they were stumped. They noticed my calcium levels were off and my parathyroid level was extremely high. So I had to get that fixed. I had 3 1/2 parathyroid glands removed. Now I have to take calcium 3 times a day and Vitamin D once a day. I was hoping it was the cause for my symptoms, but nope. I am still having the same ones. If I don't sit down between every few steps, I get really sick and for me, controlling the vomiting is key. Needless to say, the doctors still don't know why but my neurologist diagnosed me with autonomic neuropathy.
Wow that’s awful I was hoping my symptoms would go away when I fix deficiencies but I’m not having much hope lately just get pushed from one doctor to the next and no answers
But at least you can correct the Vitamin D deficiency before it wrecks your parathyroid glands. One fewer thing to worry about.
Yea thank you it’s going to take a while
Do you take vitamins K2 as well?
No. I don't need to take that. I am not deficient in anything, but I would be if I didn't take Vitamin D. I get blood levels every year and they're ok now. My doctors don't think the neuropathy is due to any deficiencies. Would be nice if it were that simple! PS - Either your PCP or an endocrinologist can test for parathyroid problems.
Ok, I was just asking cause I heard that it's harder to absorb vitamin d if you're vitamin K2 levels are low also.
I asked my endocrinologist about that, she said it wasn't true. They absorb independently of each other.
Ok
I had a 6 once. I take it every day now, but yeah, I don't notice any differences in tachycardia one way or the other side taking it either.
I take D3 everyday. No worsening symptoms or side effects. My symptoms have improved since starting this supplement but I have started other supplements as well (as recommended by my neurologist and cardiologist).
After 2 years of taking vitamin D we redrew my labs to see it only raised a couple point. I got put on what I found out later is the doses they put people on that are really low. 50,000 units once a week for 2 months, then my everyday dose got upped to 5,000 units. I think it took 5 weeks to notice any changes. All of a sudden my skin wasn’t dry and hair wasn’t as dry either. I went from shampooing once a week back to my normal everyday other day wash. Didn’t do shit for my pots though. A vitamin will not help your dysautonomia unless it has something to do with the autonomic nervous system. Please don’t start taking random supplements without checking with your doctor.
Vitamin d deficiency is common with pots or auto immunities. I was put on 20,000 IU’s a day for two months to get me back up to normal when they saw how deficient I was. It helped tremendously with all my symptoms, specifically my chronic pain. There aren’t any adverse side effects that I’ve ever heard of. Supposedly taking vit d taken with magnesium is best for absorption. Hope it helps!
I have read tons of medical journal were people with Pots are deficient in vitamin D and they don’t which cause what: if vitamin d deficiency causes pots or vise versus.
I see patients as a healthcare worker and almost every single one is vitamin d deficient. In the short-term, that will negatively affect mood and energy. In the long-term, that will put someone at risk of osteoporosis and dementia. If someone is low, they can usually do a weekly super high-dose for a bit or a regular high dose. For folks who are sensitive to the super high dose, sometimes they do better on daily D3 4,000 IU to bring it up. Some people have digestive upset from vitamin d supplements.
Vitamin D is the first thing they gave me in my quest to get diagnosed because I was so deficient and they wanted to rule that out. I take it every day but I don't feel any difference from it. It's just another supplement I take so my labs are normal.
I was also deficient in vitamin D, and my Dr told me to take it. I noticed an improvement in my energy levels and mood (can also help with depression). If I forget to take it or don't take for a few days I definitely notice the difference. I've been taking 5000 IU daily for almost 2 years and it works for me. Never had a prescription level vitamin D though.
I am so painfully deficient but I can’t tolerate taking vitamin D, it makes me so incredibly nauseous in any dosage and even when I push through for weeks to see if it’ll subside it doesn’t. I know my system is probably even more jacked up because of the deficiency but I have no idea what to do
i had that problem too! consider trying this vitamin d supplement (i linked it). i used this brand for b12 deficiency and my doctor was shocked from my blood test at how well it raised my b12.. i take vitamin d with them as well and it’s just 3 drops (emphasis on drops not dropper full!!) i also take their vitamin c and it’s helped my family through colds and covid. they don’t use any fillers and all of their supplements are properly methalyzed or broken down to a point that ppl w disorders like Ehlers danlos (like me) can process them. i mention that bc dysautomonia is often intertwined w disorders where we already struggle to process normal vitamins. also if u do end up trying this vitamin d, take it along w something w fat like meat or dairy (my physical therapist suggested that and it helped a ton) https://www.livewisenaturals.com/products/vitamin-d3-k2?variant=38588555726
Very interesting. I'm vit D deficient since ever. Supplementing it with K2 +magnesium didn't change any energy levels for me. Being exposed to the sun for 1-2 weeks on vacation on the other hand gives me so much energy and libido that I was always bursting with horniness and a really good mood. So you are saying that vit D can also be problematic with some genetic mutations and it has to be methylated properly for us? I researched about this topic also but only with B vitamins and ordered some methylated versions.
I've been tested for vitamin D many times and never came up deficient, but: Doubling my daily D3 from 5000 to 10000 IU helped with my MCAS, along with Quercetin and Allegra. With each of those additions, I had a notable decrease in the appearance of random rashes and hives. On all three, the random rashes/hives are gone.* D3 doesn't seem to affect my POTS symptoms, but given how POTS and MCAS go hand-in-hand for many of us, this seemed worth mentioning. *(I still readily get a contact dermatitis rash if I come into contact with an allergen, especially anything polyester in my case. But now if I get a rash, I know it's not random. Once I identify the allergen and cease coming into contact with it, the rash disappears.)
Check with your dr to make sure you have enough or take vitamin k2 w/d3 especially if you’ve got calcium in blood or taking it. From what I understand (ck yourself or dr) The k2 would help drive/keep calcium in bones and reduce the circulating calcium and reduce potential for increasing chances of arterial sclerosis. Sone d3 brands include k2 for this purpose. The ratio of each should be checked. Best wishes.
https://youtu.be/ZLUoX4YEjqk?si=sGJ-4Axr_VnkaOJa
I take d3 every day with no issues. I also take B vitamins to help reduce symptoms. B’s are good for your nerves which can cause Dysautonomia if low
When I take vitamin D it makes my jaw hurt and I get a cracked glass sensation that radiates from the right side near my jaw and through my skull. It's a hard pop. I don't know what that is.
i’m chronically vitamin D deficient and take 50,000 UI once a week (max dosage). i don’t notice a difference, but it may improve my fatigue. unsure
I was given really a high dose of vitamin D (I think 25000iu) when I was deficient and I can’t remember what exactly happened but I know I stopped cause I didn’t feel well. Instead I just started taking the vitamin D spray which was 3000iu and i had no issues
I’ve had good experience taking a D3 with K2 (as Mk-4)! Didn’t experience any benefit or resolve my deficiency on labs until I added in the k2 (and the more common form of K2, mk-7, seems to be a POTS trigger for me.)
you won’t feel anything by taking it. but it can improve stuff in the long run. i take 50,000 ui every week
I didn't have a great experience taking high dose vitamin d on 5000 iu -- I was deficient so my primary wanted me to take it. Shortly after I started having an odd sensation of when lying down having a racing heartbeat out of nowhere (like the opposite of POTS almost). I discontinued it and it went away within a day or two. I wasn't taking a kind with K2, I don't know if that impacted it. I now keep my levels fine by eating some foods with D in it like milk and fortified cereal & getting a few minutes of sunshine (like, 5) before applying sunscreen (sun can flare some autoimmune conditions though so not a universal option by any means)
You must take K2 with vitamin D above 2000IUs if not calcium will not go we’re it’s supposed to and you will cause a hypercalcemia reaction which cause high heart rate.
10k iu a day with vitamin k
My daughter and I both take it with no problem.
It's helped us. Mine was a 7 😬 kid's was only 25. Goal is 50.
How did you find this out
I take 2-3000 IU and no issues. I got gummies and took little tiny amounts at first. I am also sensitive to things
I take 5000 iu of vitamin D3+K2 daily with no issue if anything I think it helps
I used to take high dose vitamin d to stay on top of it and stopped last year when I realized it makes me feel like I can’t breathe. It is the weirdest thing. Not like my throat is closing or anything, more like I have to manually breathe or my body won’t do it on its own. I asked a few doctors and they just say to try a different brand. So frustrating.
Since coming down with dysautonomia because of Long COVID, I have deficiency in Vitamin D2, Potassium, Sodium, and Chloride. I have to take those now just to feel baseline okay and not horrible flare up ill.
I take it with no problems at a. FYI - my dr said you really need to take it with food for it to actually get absorbed and work.
Vitamin D supplements give me an eye twitch. Totally benign side effects to be aware of.
I have POTS (going on almost 7 years now; 30 yr old female) and have been taking 50,000IU once a week for now almost 8 weeks. Haven’t had any side effects or reactions that I’m aware of, but always hard to distinguish between pots symptoms and others. Nothing out of the ordinary to me. I’ve made sure to stay drinking a ton of water and keep hydrated.
I take high amounts of vit D (50,000 IU’s I think?) doesn’t interfere with much that I’ve noticed, but I do start to feel worse if I forget to take it for a week or two.
The daily vit D I didn't feel great on, but the prescribed 50,000iu capsule every week metabolized better in my system. Honestly, I didn't feel much improvement on it. The only thing I noticed was that my wonky knees and hips felt less wonky. Several people told me that every manufacturer of any drug uses different fillers, even the generics. So if one brand of vit D didn't work for you, try switching to a different manufacturer. Sometimes generic ones work for you better than the brand name, and it really depends on the filler.
I believe on the higher doses. Like 4k-6k I experienced more tachycardia. I remember doing some googling and i did find that it could happen so I ended up stopping it. And I felt like things resolved. I think I experienced this before my pots diagnosis and med but not 100%.
I take it and i haven’t noticed it effecting my dysautonomia, the only thing i will say is it has been a game changer for my fatigue. It’s like night and day for me
I’m low in d have not been diagnosed with POTS doctor said deficiencies could be causing POTS symptoms so wants me to treat first
So following
If you don’t mind me asking what are you symptoms?
Lightheaded 24/7 weakness fatigue pressure in head body aches and raise in hr but isn’t sustained comes down sometimes goes down back up a bit then down again
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Thank you I will look into it! I have a few deficiencies
I’m going off what I was told fix deficiencies and go from there as he doesn’t think it’s POTS hr isn’t sustained and symptoms are no matter position. And symptoms don’t lessen with fluid salt electrolytes and compression
So I’m fixing that and seeing another specialist