Vitamin D Deficiency

[collies1974]

So, my Vit D 25hydroxy level came back severely low at 13 (norm 40-80). My cardiologist does not like this at all and prescribed the high dose Vit D 50,000 iu weekly for 8wks, then more vit d for 4 more weeks. I have read in several places that Vit D supplements helps POTS patients, but never on how... Does anyone know more about this? I am now going to see endrocrinologist to rule of hyperparathyroidism (crazy, but I am hoping that this may be the cause of my POTS!).

Thanks in advance...

[potsgirl]

From what I remember reading, one of the main things it can help prevent is fatigue and feeling shaky and weak. It helps your body be healthier, and anything that makes you healthier should make you (and your POTS symptoms) feel better. Oh, and bone health, too. I hope it works for you!

[toddm1960]

4 years ago mine D level was 8, I had all of the neuro symptoms, electrical crawlies, numb hands and feet. I started with 50,000 one per week, 6 months later my level was still at 10. Long story short today I've been taking 50,000 per day for over two years now and my level stays around 45, never any higher. My neuro symptoms have mostly gone, but nothing has changed with my POTS symptoms. I hope you can get your levels back to normal and you see some improvement.

[PotsMom]

It does seem that vitamin D deficiency is common in POTS patients but it also seems to be common now in a much more general population as well. My kids were both found to be very low, similar to your numbers, and were given high dose D3 to get them back in normal ranges and they continue to take lower doses. It has not helped POTS symptoms but they continue to take it.

[collies1974]

Thanks you guys. I spoke to a cardiologist friend of mine this morning, and he said that the top Electrophysiology docs and heart surgeons are now prescribing Vit D to patients, to possible help with arrhythmias (although not confirmed in literature). Healso said what you guys said, to help with fatique and generalized complaints of weakness and lethargy. He said that NYU's cardio teams all prescribe Vit D to their POTS patients, and have success with symptom management, again, no theory on how...

Thanks for the replies.

Tracey

[collies1974]

4 years ago mine D level was 8, I had all of the neuro symptoms, electrical crawlies, numb hands and feet. I started with 50,000 one per week, 6 months later my level was still at 10. Long story short today I've been taking 50,000 per day for over two years now and my level stays around 45, never any higher. My neuro symptoms have mostly gone, but nothing has changed with my POTS symptoms. I hope you can get your levels back to normal and you see some improvement.

Wow, I am glad to hear that you are feeling better, but it took a long time. Thanks for the infor

[maggie]

I also have very low vit d levels, 14. My neru wanted me on a dosage to help, but I a liver enzyme problem and don't know if I can take the supplements. I have to now how it is metabolized in my liver before I can take it. Does anyone have any thoughts on how I could find out this info?

Maggie

[summer]

I never actually had my level checked, but started taking vit D3 about 6 months ago. I have noticed since starting to take it that I have been sleeping a lot better. Any chance this is related or is it a coincidence?

[sue1234]

Maggie--I would think a pharmacist would know how it is metabolized, maybe?

[Brye]

I just finished my 8 week of 50,000 IU weekly supplements as well as taking a Vit D/cal supplement twice a day. I was at 11 when I started and the reason I went to see a doctor at the time is I was beyond absent minded, more tired than usual and had Horrible memory/focus problems. I ran 2 stop signs in a week and was scared into going to the doctor. I have POTS and 4 kids and it's almost emberassing going to the doctor complaining of excessive fatigue. Fortunately my Int Med doctor takes me serious. The 1st time it was mono, this time Vit D deficient. I am feeling better. Back to my normal tired state and I haven't run a stop sign since I started the supplement. Must have helped some!!!

Brye

[Brye]

Forgot ... my last level was in the normal range.

Brye

[HopeSprings]

Just got my results back and my Vit. D level is at 19. The Dr. said to take 2000mg a day, but this seems like a lot? I am taking 1000 -- not sure if this is enough, but I read that TOO much vitamin D can cause problems too (and I don't need more problems!). What amount have your Dr's recommended?

[toddm1960]

I've been taking 50,000 IU every day for two years, if your level is low it's not too much. Some of the latest research is finding the opitmum level of D to be between 120 and 150.

[maggie]

Sue,

Thanks for the suggestion, but all the pharmacist can do is look it up and the manufacturers don't release that infor. I have even tried calling the companies who produce whatever the supplement is that I have wanted to try and I can't get an answer.

Maggie

[Birdlady]

Everyone is on this vitamin D kick these days, but it is important to rule out hyperparathyroid before you start taking large doses of vitamin D. Why? Because if you have hyperparathyroid and take vitamin D you are actually interfering with your body's defense mechanism, which can be dangerous in some cases.

Our bodies use vitamin D to absorb calcium. With a hyperparathyroid, your body actually LOWERS vitamin D in the body to stop absorbing calcium which it is taking from your bones. Calcium levels should never be high, ever! So if you have low vitamin D and a highish calcium level in your blood, then you should never take vitamin D before accessing your parathyroid function.

This website explains it really well here.

http://www.parathyroid.com/low-vitamin-d.htm

[Christy_D]

My son's vitamin D level was below 10 in March, so the doctors started him on 2000 iu daily. After one week, his insomnia subsided completely and he was less sick. He was not able to get out of bed before 3:00 in the afternoon, after starting vitamin D, he could get up by noon. BUT, this only lasted for about 2.5 months and he is reverting back to insomnia now and sick longer. He is due to have his vitamin D levels rechecked, so we'll see what they are now.

[sue1234]

Maggie--I am trying to remember, was it you that once said you could not take any lactose or something like that. So, can I assume you might have something like galactosemia(?) or something similar with the missing enzyme? If so, I would assume a geneticist or some specialist with this would be able to find out for you if you could take vit. D because your levels are so low. I would think they would work hard with you to find a way to get yours up.

[babettess]

I too am Vitamin D Deficient. My levels have not hit normal yet. I am currently taking 50,000 IU's twice a week and am anxious to see if I am finally up to normal (which my lab considers to be 32-100) at my next check.

I have noticed a definite difference in how I feel when my levels are higher or lower. The higher my level gets the better I feel with less fatigue and less muscle and bone pain. I am hoping as my level continues to go up that I will continue to feel better.

I am extremely sensitive to medications, but haven't noticed any problems with the vitamin D. It is a natural substance. I take the prescription gel-cap kind that is green and football shaped. I cut a hole in the gel-cap and squeeze the liquid out into juice or applesauce and take it that way. I figure the gel-cap would be the biggest problem if I were to have a reaction so I don't use it. That and of course with my swallowing difficulty I couldn't swallow the gel-cap anyway.

Seems there is a connection somehow as many of us are deficient.

Babette

[maggie]

I have a dr who ran my dna to find out the problem with my liver and I work with her very closely as to what I can and can not take. At this point the dr only works with pharmaceuticals. I will search the net for a geneticist to see if I can find one to help me. Thanks for the suggestion.

Maggie

[HopeSprings]

Dana--

If you were hyperparathyroid, your blood calcium would be HIGH right? So if it is not, it is OK to take Vitamin D, right? I would assume Dr's are checking calcium (which is a more standard test) if they are going out of their way to check Vitamin D... (at least I would hope so).

Everyone is on this vitamin D kick these days, but it is important to rule out hyperparathyroid before you start taking large doses of vitamin D. Why? Because if you have hyperparathyroid and take vitamin D you are actually interfering with your body's defense mechanism, which can be dangerous in some cases.

Our bodies use vitamin D to absorb calcium. With a hyperparathyroid, your body actually LOWERS vitamin D in the body to stop absorbing calcium which it is taking from your bones. Calcium levels should never be high, ever! So if you have low vitamin D and a highish calcium level in your blood, then you should never take vitamin D before accessing your parathyroid function.

This website explains it really well here.

http://www.parathyroid.com/low-vitamin-d.htm

[Birdlady]

If your calcium has always been within normal range you are probably safe, but without testing PTH you just don't know. That website I linked has seen a few cases where calcium was like 10.2 (which is 'normal') and the patient had hyperparathyroid.

I noticed labcorp recently lowered their calcium lab ranges, so obviously they had reason to believe that a calcium of 10.2+ isn't safe.

At this link, if you scroll down to the chart he created with normal blood calcium levels, you'll have a better understanding of what I'm trying to explain!

http://www.parathyroid.com/diagnosis.htm

I've had a few calcium levels in the 10's so I checked mine since taking vitamin d makes me feel so terrible even though I'm really deficient. My PTH was appropriately low for those calcium levels, so I'm good.

[green]

So, my Vit D 25hydroxy level came back severely low at 13 (norm 40-80). My cardiologist does not like this at all and prescribed the high dose Vit D 50,000 iu weekly for 8wks, then more vit d for 4 more weeks. I have read in several places that Vit D supplements helps POTS patients, but never on how... Does anyone know more about this? I am now going to see endrocrinologist to rule of hyperparathyroidism (crazy, but I am hoping that this may be the cause of my POTS!).

Thanks in advance...

Has anyone seen the research suggesting that vitamin D supplementation is not helpful for some autoimmune diseases? The logic is that some autoimmune diseases are caused/exacerbated by persistent low-grade infections, and vitamin D supplementation temporarily eases the inflammation but causes the infection to worsen.

http://www.eurekalert.org/pub_releases/200...f-vdm040809.php

[issie]

So what are we supposed to do? We try to help ourselves, but we may be harming ourselves MORE. It's all very confusing. I guess the best thing to do is see IF we feel better with a supplement/product. Then leave it off for awhile and add it back later and see if it makes a difference. My goodness we are all just guinea pigs. We have to be experimented on by our doctors and ourselves.

[green]

So what are we supposed to do? We try to help ourselves, but we may be harming ourselves MORE. It's all very confusing. I guess the best thing to do is see IF we feel better with a supplement/product. Then leave it off for awhile and add it back later and see if it makes a difference. My goodness we are all just guinea pigs. We have to be experimented on by our doctors and ourselves.

That's something I thought about too.... this is a situation where incomplete information is worse than no information at all. If you read the study I linked to in my first post in this thread, you might conclude you should avoid sunlight and vitamin D. But if you went to your GP and had a blood test and found out you were vitamin D deficient you would be prescribed a vitamin D supplement. Given all the information at hand, I guess the best choice is to do what your doctor recommends since he makes recommendations based on accepted practice, while the research stuff is 'on the edge'

But then, I guess this is a case for not bringing up issues like this to begin with.... maybe I shouldn't have made that post.

I have been pursuing a personal philosophy of intentionally trying NOT to research my health condition in the past few months, because I feel like I get myself worked up emotionally thinking about all the things that could be responsible for my not feeling well. I have a bad habit of being unable to distinguish between a remote possibility (i.e. some new research hypothesis) and established practice.