What Are You Experiences With Vitamin D Or B12 Deficiency?

[stephsurf]

Hello,

My question is how many of you have been tested for or suspect you have a vitamin deficiency, either vitamin D or B12 (as these seem to be the most frequently associated). Currently I am undergoing a diagnosis for POTS but the cardiologist is 99% sure it is the case just from bedside testing and monitoring but as such I haven't been given any drugs to trial. On a side note my POTS seems to be purely related to tachycardia not low blood pressure and this varies on a daily basis.

The problem is I can't really pinpoint a cause as such for my symptoms. I did have quite a bad viral infection at the end of last year however, this was only suspected and it didn't really coincide with the typical viral symptoms that you would expect to get back from lab work and vitals (in my eyes anyway).

I have heard that vitamin deficiencies are highly likely in terms of causing cardiovascular type problems and to be honest in terms of sunlight etc. a Vitamin D deficiency could technically be plausible although I have always kept a healthy and varied diet I realise we synthesize most of our vitamin D from the sunlight. The only reason I am leaning towards this is apart from the lack of sunlight, a lot of my symptoms persist on laying down, I have quite a few sleep related issues/insomnia, muscle aches, quite bad neck aches (which has no doubt contributed to my stooped posture), clicking & popping, pressure headache, very bad exercise intolerance, nausea, fatigue, brain fog (best as I can describe it), acid reflux, paleness, general feeling of weakness etc. Although I do realise these do all coincide with POTS these symptoms have seemed to come on progressively and only very recently got really bad.

I am considering getting a home self-test kit via the hospital before I attempt any supplements just incase the results are remarkable. What are your experiences with these supplements/stories?

Thanks for any help!

[imapumpkin]

My integrative medicine doctor tested me for Vitamin D deficiency last fall and found that my vitamin D was extremely low. He put me on 20,000 IU a day and by February my levels were high and I had to stop taking it. I can't say I noticed much of a difference in how I was feeling on the vitamin D

I don't remember if he tested for low vitamin b-12 but he put me on methyl-b12 injections for fatigue which made me feel 100 times better for several months until my levels plateaued and now I don't really notice a difference when I take a shot.

[blueskies]

At my last test my vitamin d was 'very low' according to the doc. I've forgotten the number. I tried vit d tablets only to find they exacerbated my constipation problems to the point of no motility and so I stopped them -just about any med I try makes my gi system slow down to a greater or lesser degree. I can't go out in the sun because it my ERYTHROMELAGIA pain flare.

Blue

[Goschi]

I was tested very thoroughly for B12-deficiency and definitely didn't/don't have it.

However, mit D level was extremely low about 6-7 months ago (almost below measurement). I was given vit D tablets but couldn't tolerate them at all (made me extremely jittery and nervous). In March (without being exposed to sunlight) my vit D was surprisingly back in the middle of the range again.

I didn't experience any differences how I felt concerning my dysautonomia, however my d and b12 levels were...

[misstraci]

My vitamin b12 and d are both low. the D is very low. I was prescribed the once a week pill at 50,000iu but never took it. instead I decided to try to be out in the sun more and took an over the counter 1,000 or 2,000 vitamin instead. I always read up on medicines/vitamins prior to taking them and i read nothing but negative things about such a high dose of D. I can't tell a difference in how I feel since starting the lower doses of vitamin D and have not been back for a level check either. I was also on b12 shots that I gave myself at home. I honestly could never tell a difference with those as far as how I felt. I am currently not on the shots anymore.

Hope you feel better!

[dkd]

I had very low vit D (8). Was given a prescription dosage (50,000 IU) once a week for 6 or 8 weeks. My level came up to 44. I didn't notice any difference in how I felt. So, I really don't feel like it was related to my dysautonomia. But hey, who knows???

[corina]

Hinsteph, welcome to the forum!

[stephsurf]

My integrative medicine doctor tested me for Vitamin D deficiency last fall and found that my vitamin D was extremely low. He put me on 20,000 IU a day and by February my levels were high and I had to stop taking it. I can't say I noticed much of a difference in how I was feeling on the vitamin D

I don't remember if he tested for low vitamin b-12 but he put me on methyl-b12 injections for fatigue which made me feel 100 times better for several months until my levels plateaued and now I don't really notice a difference when I take a shot.

Woiuld you say you feel any better fatigue wise now, from what you felt initially that you have had the b-12 injections, as you said that your levels had plateaued? Or has it gone back down to how you were feeling before! Only reason I ask is because I think the fatigue is becoming the worst bit about all of this for me!

Hinsteph, welcome to the forum!

Thanks Corina!

[looneymom]

Hi and welcome to the forum. When my son went to MAYO for his testing, they also tested for Vitamin D and iron. My son was deficient in both. His iron levels stay up but his D levels have been a struggle to keep up. My son does not hardly go outside due to his medical condition. So I have been told to continue to supplement with vitamin D3. His levels are checked every 6 months.

My son also takes a methyl B-12 shot twice a week and it does help with fatigue issues.

[stephsurf]

Hi and welcome to the forum. When my son went to MAYO for his testing, they also tested for Vitamin D and iron. My son was deficient in both. His iron levels stay up but his D levels have been a struggle to keep up. My son does not hardly go outside due to his medical condition. So I have been told to continue to supplement with vitamin D3. His levels are checked every 6 months.

My son also takes a methyl B-12 shot twice a week and it does help with fatigue issues.

Thank you for your reply! Would you say that he is feeling any better after starting the vitamin D (I know you mentioned that it has been difficult to keep the levels up so possibly not)? Our usual blood tests I believe would have picked up a higher MCV related to B12 deficiency but this has not been the case, so I doubt I have this.

[looneymom]

I really do not have a good answer for you about the vitamin D. My son POTS is mixed up with autoimmune condition. He is taking 5,000 a day because his Vitamin D levels were down in his December testing. My son is getting ready to have plasma exchange this next week and the doctor will be closely monitoring those levels again. Plasma exchange can mess up calcium and D levels. When my son gets through this next treatment, I may be able to give you some more answers then.

Before my son had POTS, he had walking pneumonia. His POTS condition was brought on by more than one type of virus. Strep and Mycoplasma P have both been found in testing. My son has been sick for a long time and I've been trying to make sure that his body is getting enough vitamins/supplements to keep his body functioning at it's current level. The antineuroal antibodies that have been found in my son's body are caused by the viruses that have been found. Right now, I am really not able to tell what vitamins and supplements are helping because of his current medical condition but his doctor does not want anything taken away until we get the autoimmune condition under control.

[blueskies]

I was tested very thoroughly for B12-deficiency and definitely didn't/don't have it.

However, mit D level was extremely low about 6-7 months ago (almost below measurement). I was given vit D tablets but couldn't tolerate them at all (made me extremely jittery and nervous). In March (without being exposed to sunlight) my vit D was surprisingly back in the middle of the range again.

I didn't experience any differences how I felt concerning my dysautonomia, however my d and b12 levels were...

Hi Goschi,

A similar thing happened to me, only it was my iron levels. I tested extremely low in iron and therefore was eligible for the camera test for free -- swallow a pill with a camera and they get to see your digestion tract from one end to the other. About a month later, just before I was about to have the camera test I requested another blood test and it showed my iron levels had returned to 'low of normal' ranger. I had not feel any better but I was suspicious about the first result. And right to be, apparently. I could have kicked myself because I was no longer eligible to have the test done for free -- it meant paying 2,000 dollars out of pocket and I'd already had a host of tests for my gi tract so I decided against having it.

Years before I had a blood test come back saying I was menopausal when I clearly was not -- showing none of the signs that I was going through menopause that I was to experience in later years. I had a test the following year and my FSH levels etc, were back to normal.. I put it down to the fact that maybe the lab had mixed up my results with someone else's. But not sure why I was prompted to ask for a 're-do' of my iron levels, years later, just prior to diagnosis with POTS. As crazy as it sounds I came to think that perhaps, with POTS and whatever else I have, or may have, seems to do strange things to my body that go back to being normal. Etc. Not so crazy thinking, really, when I think about the craziness of pots etc.

blue

[Raisin]

Tried to quote Blue's comment regarding menopausal levels but I didn't do it right. Ha!

2 comments....one, my Vit D was very low and so I have supplemented up to normal levels now. Unfortunately, I can't tell a difference in symptoms.

I also was told I was menopausal (FSH over 100) but had only missed one month and I was unable to eat that month so I may be able to blame the missed one (if tmi, sorry) on that. Then, about 3 months later, retested and the level was 5 which is completely non menopausal and not even premenopausal. I have no idea what that was but I agree that I think all levels of whatever can just go wonky. I always wanted to feel "special" but not like this. Lol!

[sue1234]

My vitamin D has been low for the last 8 years. I never could tolerate the 50,000 IU more than 2-3 doses a year, so it has stayed low. I just recently retried D3 OTC, and am actually tolerating them now (yay!). I must say that in the last 2 years I have had horrible muscle clenching in my trunk area. After just a month on about 3000 IUs, the muscles are about 90% normal! I'm hoping to test and see where my numbers are at. I always was in the teens, and working hard now to reach the 50s.

[Natops]

As far as B12 testing… from what I have read – just getting your B12 levels isn’t accurate enough… to fully check to see if there is a B-12 deficiency doctors run:

B12 serum level

holotranscobalamin+ (holoTC)

methylmalonic acid* (MMA)

homocysteine* (HCY)

+ holotranscobalamin (holoTC) is a newer test that measures "metabolically active B12", now available commercially.

[stephsurf]

As far as B12 testing… from what I have read – just getting your B12 levels isn’t accurate enough… to fully check to see if there is a B-12 deficiency doctors run:

B12 serum level

holotranscobalamin+ (holoTC)

methylmalonic acid* (MMA)

homocysteine* (HCY)and

+ holotranscobalamin (holoTC) is a newer test that measures "metabolically active B12", now available commercially.

Hello! Thanks for your comment. I actually was wondering about this. I have actually sent off a test to check my vitamin D levels and am awaiting the results before I take any supplements. However I have consistently received normal pathology reports in terms of FBC etc. Therefore as far as my doctors am aware I do not have an anaemia despite multiple doctors beforehand saying I looked like I was most definitely anaemic. I started taking a supplement of B-complex the day before yesterday just to see whether I would feel any different and even though its early days I actually have noticed a vast improvement from yesterday - I took the supplement yesterday morning and by the evening time I felt so much more energised and then today I have felt better than I have done in a long while (considering I've felt like crashing 24/7 even after a full nights sleep). This could of course be a complete fluke! Is it therefore possible that I may have a deficiency rather than full blown anaemia which obviously wouldn't be detected? I am also requesting copies of my blood tests since last year when all this started to go down hill to see if I can see any decline as it seems my physicians office and hospitals didn't have each others blood test results but were therefore only going off one point in time!

[bellgirl]

I only found out about my vitamin D3 deficiency by asking to have it checked! After about six months it was in normal range, but I had loose teeth and I lost a molar and almost 2 others on the front bottom, because of it. You are your best advocate! Always do your own research!! I found that it increased my energy level immensely. Best thing I ever did. There are many of us here who have had this.

[lfreem02]

I was vitamin D deficient, and took a prescription supplement for it. My Cardiologist said that most of his patients with some form of Dysautonomia are deficient in vitamin D. I have read though that the prescription form is not D3, which is what is needed. So, I am taking over the counter supplements. I watched a special about MS this weekend, and the highest rate is in Orkney Island in the north of Scotland. Vitamin D levels in people who live there have been shown to be very low. MS is almost non-existent in areas around the equator. I am sure there is a genetic factor, but researchers have found a strong link between vitamin D and nervous system disorders. I haven’t heard though if the disorders cause the body to not be able to process and absorb the vitamin properly, or if the vitamin deficiency causes damage.

[Heartandsoul]

Stephsurf,

I had to raise my D level prior to POTS onset for another reason. That said, The cardio doc who eventually referred me to POTS doc felt it was impt to check my D level. When the number came back, She said it was the highest she's ever seen but was happy with the number. It was even higher prior to POTS onset. So for me the D did not prevent onset. My b12 is in Very good range also and made no diff at all for me.

[Goschi]

I don't know about B12, to be honest.

But concerning D, it is absolutely clear that a high percentage of dysautonomia patients have very low levels at times. So there must be a connection.

On the other hand, having normal D levels doesn't prevent you from getting POTS, as well as raising (low) D levels when you already have POTS doesn't seem to be helpful in terms of improving any symptoms. So, from this point of view, there is obviously no connection.

Very wierd and contradictive, indeed...

[TCP]

I was diagnosed this year with vitamin D deficiency and only found out when I checked out my test results online. I'm taking Solgar 10,000iu per day and I've heard it takes 6-12 months to level out to normal serum levels and the high levels have to be maintained and replenished constantly. People with neurological and auto-immune disorders often have problems metabolising certain vitamin and minerals. I know there can be B vitamin deficiencies and depending on what you have wrong with you; there may be calcium and Co Q10 issues, too.

It would be good to have everything checked out once a year.

[Libby]

I was checked for both when I was first diagnosed with POTS. Vitamin B12 was normal, but D was incredibly low. 3ng/mL. I'm kind of surprised that my bones hadn't turned to mush.

I had been having these electric shocks, I guess would be the best way to describe them, down my shoulders and arms. At the time, because POTS was causing a lot of weird symptoms, I just assumed it was part of POTS. But after a few weeks of 50,000IU vitamin D3, they disappeared. That was really the only benefit that I noticed. I'm sure there were others, especially cancer prevention, but those shocks made me feel awful. And my skin was hypersensitive when they were firing, like I had a fever. I hated having anything brush up against me. Getting rid of them was a huge plus, even if it was the only plus I was conscious of.

Regarding the vitamin D levels in people with dysautonomia vs the general population, has there been any studies on whether the low vitamin D levels that are frequently found in patients are the cause or the result of the dysautonomia? If heat and exercise make you feel worse, you're not likely to spend much time in the sun. I've only seen research that states that there is a frequent comorbidity, without many comments on the correlation and causation.

[Mike]

I had my vitamin D levels checked and they were very low. The doctor suggested taking a 5000 IU vitamin D3 pill a day, it has helped with my energy but none of my other symptoms. I can not be in the sun for very long at a time, like seconds if it's a sunny day, it just drains me so much. I would suggest getting your levels checked before trying any vitamins, there are several different strengths, from 1,000 IU to 10,000 IU, don't want to overdo it, but that's my opinion.

[imapumpkin]

stephsurf--

My fatigue is definitely better than it was prior to taking any b12 injections even though I seem to have plateaued on my levels. My fatigue is miserable and constant, but there are days i feel better and days i feel much worse so it's hard to gauge just what is helping it. In general I believe that continuing to take the shots even though I don't get an energy boost from it anymore is still helpful for me. Not only do I start to feel worst if I miss a day (I take it every 3 days but if i got 4 days with out it, i feel it) and it also makes the rest of my body feel better, and I can't really explain why. I just feel less sick and more well overall, if that makes sense.