Vitamin D

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Vitamin D

Postby 6t5frlane on February 17th, 2013, 10:22 am

Anybody here ever get their Vit D checked. My DR told me I'am dangerously low.My result was 16. A good number would be at least 40-60 or higher.Below 20 is Vit D deficient. After looking up some of the symptoms and seeing what others have had for symptoms Twitching and cramps are common. Staring on heavy doses 3 times a week. Hopefully something good will happen
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Re: Vitamin D

Postby aztwitchy on February 17th, 2013, 4:03 pm

I love that someone posted about this. I was tested sometime back and was also found to be low...think I was like 23 or 24...weird thing is when I supplement vit d it seems to increase twitching...there may be some kind of connection between vitamin d levels, calcium, and twitching. The low vitamin d was the only thing that came up odd in my blood work.

This could all point to thyroid issues but my thyroid hormone levels were ok...so I am confused
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: Vitamin D

Postby christo on February 18th, 2013, 1:47 am

I am also interrested in this one, even if I had not my vit D tested. As for your twitching increasing with vit D supplement, I had kind of the same issue with magnesium supplement. I can really see a connection, if I take magnesium daily my twitching will increase. This may well be due to some imbalance between multiple things in our blood and adding a supplement maybe increase the imbalance ?
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Re: Vitamin D

Postby anita on February 18th, 2013, 8:05 am

Just like you aztwitchy, my only abnormal blood result (amongst dozen that I had repeatedly) was a low vitamin D level. It was around 40 and my neuro started me on high dose Vitamin D, which is 5000 units daily for 3 months. He agreed that this is not the cause of my twitches but was convinced would help with muscle pain and fatigue. I have been taking it for about 2 weeks now.

Vitamin D deficiency is highly prevalent in countries with long winters, in people who spend a lot of time indoors and in the elderly. It helps the absorption of calcium from the diet and is proven to help in osteoporosis. It was however linked with everything and anything in the body from muscular pain to cancer and MS. Some but not all benefits were proven in good clinical trials.

I think, at least in my case, that vitamin D deficiency was a coincidental finding. I never thought it could increase the twitches and I'm sorry to hear it did that to you aztwitchy. It didn't affect me in a bad way but I cannot see any benefits either. I do know for sure it helps my bones so I will continue to take it. Sufficient levels are considered to be above 60, optimal over 80. Levels over 100 are too high. I think the recommendations might be different in different countries, but regardless the country levels of 15 or even 25-30 are too low.

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Re: Vitamin D

Postby 6t5frlane on February 18th, 2013, 8:07 am

aztwitchy wrote:I love that someone posted about this. I was tested sometime back and was also found to be low...think I was like 23 or 24...weird thing is when I supplement vit d it seems to increase twitching...there may be some kind of connection between vitamin d levels, calcium, and twitching. The low vitamin d was the only thing that came up odd in my blood work.

This could all point to thyroid issues but my thyroid hormone levels were ok...so I am confused


I'm seeing and Endo DR today....Maybe he has some ideas
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Re: Vitamin D

Postby BFSBurger on February 18th, 2013, 8:51 pm

Target level should be 60.

Just wanted to clarify the statement made in the first post "or higher".

Don't go higher as it becomes toxic.

The way to reach 60 is to take 4,000 to 5,000 IU daily.

That will get you there, and keep you there.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Vitamin D

Postby twitchinjohnny on February 18th, 2013, 10:03 pm

I was diagnosed with low B-12 and low D. I've been taking supplements under my doctors supervision for awhile now. I would dare say that the B-12 has helped with all of the weird paraesthesia that I've been experiencing. Insufficient B-12 can cause demyelination of the CNS, similar to that which occurs with MS. My sensory nerve issues have improved yet, honestly, my fasciculations have become more intense and more plentiful since I started these supplements. I've only been on the D-3 supplement for a few months. So, the jury is still out, as far as I'm concerned.

One of the most important lessons I've learned throughout all of my BFS experience is that of the need for patience. Reflexive reactions and jumping to conclusions never serve us well. There is much homework to be done.... on our part, and on the part of our physicians.

I am most grateful for the gift of communicating with others on this board. The insight and the reassurance of others who know, feel and live our plight is what keeps us sane, and keeps us going!

I live one good, strong day at a time. Today I was able to do everything I wanted to do. I twitch all over, yet I have no weakness.

God bless all who struggle with this thing know as BFS. Together we'll pull through!

Cheers!

John
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Re: Vitamin D

Postby aztwitchy on February 19th, 2013, 12:52 am

I posted in another thread but I will repeat here...I am convinced supplementing vitamin d will INCREASE TWITCHING

I spent a month supplementing with vitamin d at 5000 iu....really bad twitching

When I scaled back to 2000iu a day I noticed a decrease in twitching....

When I stopped I noticed my twitching was slight...80percent reduced from the 5000 iu a day

So I started for 3 or 4 days at 2000 and guess what....twitching increased again

This leaves me a couple of theories I plan to speak to specialists about...
1 - bfs is an autoimmune condition....vitamin d boosts your immune system hence making an autoimmune condition worse
2 - some kind of underlying thyroid issue not showing up in typical thyroid hormone bloodwork...this means some kind of weirdness with calcium and vitamin d
3 - supplementing with vitamin d without other vitamins is causing some weirdness...I have read various naturopaths discussions on the need to also supplement other vitamins with vit d....like vitamin a, e, magnesium, calcium, potassium, vit k , etc...
4 - heavy metals....vitamin d usually comes from fish oil which can contain trace amounts of heavy metal....if we already had a build up and we are adding to the load we know that's bad....mercury is known to cause all sorts of neuro weirdness

Just some thoughts I have had...they all could be wrong but for some reason my bfs is aggravated by vitamin d
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: Vitamin D

Postby TwitchyNate on February 19th, 2013, 10:01 am

Wow, wow, wow...just saw this thread. I have to contribute to this too. I was low on vitamin D, calcium, low blood sugar and low T. I can come close to correlating my twitching to the time I started the vitamin D supplements and the calcium supplements (I take a dose of two pills that contain 1200 mg of calcium and 800 mg of vitamin D in one dose). I also began taking magnesium supplements as well. There was a point a few weeks ago when I was taking the 800 mg of Vitamin D (without realizing it was in the same pill with calcium) and I was taking 5,000 IU of D on top of that. That is when my twitching was at its worst and I was in terrible shape worrying I had some deadly disease.

Now prior to my diagnosis, my legs were aching very much and constantly. I attributed it to my fear of having another deadly disease and being overly anxious but now I wonder too if being Vitamin D and Calcium deficient if that caused the achiness. As I began the supplements, the achiness left ( I attributed it to being tested for my first disease fear and finding it was negative) but that is roughly the same time the twitching began. Hmmm...could it be deficiency = achiness and supplements = twitching? I learned my mistake with the overdose of Vit D and scaled back. That was around the same time I had a clean EMG. Again, I attributed it to alleviating fears but it could have been the twitching subsided as a correlation to my scaling back the Vitamin D supplements. I still twitch all over and I am still taking 800 mg of Vitamin D but my twitching is nowhere near as often as it was 3 weeks ago.

I would be very interested in finding out what specialists say about this. It looks like there could be a correlation.
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Re: Vitamin D

Postby 6t5frlane on February 19th, 2013, 10:37 am

6t5frlane wrote:
aztwitchy wrote:I love that someone posted about this. I was tested sometime back and was also found to be low...think I was like 23 or 24...weird thing is when I supplement vit d it seems to increase twitching...there may be some kind of connection between vitamin d levels, calcium, and twitching. The low vitamin d was the only thing that came up odd in my blood work.

This could all point to thyroid issues but my thyroid hormone levels were ok...so I am confused


I'm seeing and Endo DR today....Maybe he has some ideas


Saw the DR. Gave him a history on symtoms... He is going to run some tests...B12,, T, etc . I will let you know the outcome
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Re: Vitamin D

Postby TwitchyNate on February 19th, 2013, 11:12 am

Very interested in finding this out. I, too, had a clear thyroid as well to throw that in as well.
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Re: Vitamin D

Postby aztwitchy on February 19th, 2013, 11:51 am

6t5frlane wrote:
6t5frlane wrote:
aztwitchy wrote:I love that someone posted about this. I was tested sometime back and was also found to be low...think I was like 23 or 24...weird thing is when I supplement vit d it seems to increase twitching...there may be some kind of connection between vitamin d levels, calcium, and twitching. The low vitamin d was the only thing that came up odd in my blood work.

This could all point to thyroid issues but my thyroid hormone levels were ok...so I am confused


I'm seeing and Endo DR today....Maybe he has some ideas


Saw the DR. Gave him a history on symtoms... He is going to run some tests...B12,, T, etc . I will let you know the outcome


you should have him throw in heavy metals if he can...
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: Vitamin D

Postby TwitchyNate on February 19th, 2013, 12:05 pm

Yes. That would be interesting as well. My neuro tested me for heavy metals which came back normal.
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Re: Vitamin D

Postby TwitchyNate on February 19th, 2013, 4:03 pm

Guys...something else to consider. I would never have imagined this but I've read many posts on this forum that say they took the fluoroquinolone Cipro when they began noticing muscle twitches. I took Cipro for two straight weeks which ended right before December 2012. Cipro has many very bad effects on my mood and metal state. I get very depressed and fall into despair. I went back and I told my doctor I was not completely well (have chronic prostatitis) but could not handle the Cipro any longer. I followed up with 2 weeks of doxycycline. A week and a half later is when my doctor said I had low T and low everything else. I believe is was within this time frame when my twitching started. I know my muscles were aching during this time. I'm also beginning to wonder if the Cipro was what triggered all of this or maybe the prostatitis infection or the flu that I was experiencing prior to that. My legs began aching with the flu I had in November and lasted through to when I went to the neuro on January 28. Is it possible my BFS is viral related? Cipro related? Doxycycline related? Tamiflu related? Can something like this get in the muscles and stay that long? Could that have been the cause of my deficiencies in vitamin D, Calcium, and testosterone which in turn causes the BFS. Wow...just a lot of factors here.
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Re: Vitamin D

Postby talltwitcher on February 19th, 2013, 4:28 pm

One recent study said if 100 Americans visited their doctors and had their vitamin d levels tested 77 of them would test deficient. Which is to say it is extremely common. Obviously much greater than the number who are afflicted with bfs. That is not to say there is no relationship. I also tested very low and corrected the levels and continued to twitch.
Well now, I am so happy I could twitch..... Hey, What was that? Huh, I didn't mean every cotton pickin muscle I have!
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Re: Vitamin D

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