Super Low Vitamin D

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Super Low Vitamin D

Postby phyrehawke » Sun Mar 25, 2012 9:00 am

Hey All,

I know I haven't been posting much lately, just here and there. I'm kind of coming out of a severe pain fog. But I'll post about that over on the lounge later.
A couple of months ago I started losing a lot of hair, but it was falling out in the growth pattern (oldest hair first, next youngest generation next, etc) so at least it didn't look patchy. It was falling out pretty fast and I'm glad my hair was thick and naturally curly to start out with so it wasn't so noticable. I am on Topamax and my PA said about 2% of the people taking it get low on zinc and that causes this so supplementing zinc would stop it. That didn't work. Later my GP did testing and it turned out I was *extremely* low on Vitamin D. After a few weeks on massive supplements the hair loss suddenly stopped. What puzzled her is I'm not elderly (the age group she usually sees that in) and I actually get a good deal of sun even in winter because I live in San Diego, and I usually have a good deal of D in my diet because I crave it...although I went several months where I didn't. She tested my thyroid and it was fine. My calcium level was fine indicating my parathyroid was probably fine too. So we were left with a puzzle.
I have read that "sick nerves" can eat up vitamin D to heal. Rats and mice totally deprived of it lose their hair and develop parkinson's like symptoms. Over the years I've read a number of people here w/ SM say they found they were surprisingly low on vitamin D and had to have prescription supplements for it, so I mentioned that to her. Maybe our nervous systems use more of it?

So I thought I would put this back up on the board and see if anybody had anything to say about it...feedback...links to articles, etc. ?
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: Super Low Vitamin D

Postby cluelessinAZ » Sun Mar 25, 2012 2:29 pm

I too am Vitamin D deficient, and I live near Phoenix. My sister was severely deficient, and lives in the same town. She has metabolic syndrome, and we think she may have Chiari like me. No proof in testing yet. Anyway, she was put on 50,000 IU, once a week, and found that it helped with her pain. Her PCP told her that there are recent published articles (the last couple years) about a link between chronic pain and vitamin d deficiency. I did try to research this online and found a few things that did in fact suggest a link between chronic pain and vit. d deficiency. So more vitamin d for me thanks!

I was taking 1000 IU vitamin D sporadically, and after talking to my sister about this recently, I decided to increase to 2000 IU daily. I think I am going to increase to 3000. But my pain level is actually starting to decrease. I too, have a problem with the hair loss. I use to take Topamax, and my hair loss increased. I have Hashimoto's Disease, so hair loss is a given for me. Hopefully, by increasing the vitamin d, that will help with the hair as well.
Dx'd CM/SM 01/07, DDD, minor scoliosis, Klippel-Feil, hypoplastic vertebrobasilar system,Occipital Neuralgia, mild cervical stenosis, several buldging/protruding disc through c-spine & l-spine, mild osteoarthritis, Hashimoto's Disease, FMS
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Re: Super Low Vitamin D

Postby karenb » Sun Mar 25, 2012 11:56 pm

Hi All,

My MD found out that I was Vitamin D deficient based on blood testing a couple of years ago. She immediately started me on a vitamin D supplement (in addition to all other Vitamin D sources I already had), and I noticed almost immediately that it improved my mood and energy level quite a bit.

A note of caution in self-diagnosing - it is possible to overdose on Vitamin D and even develop high blood calcium (in addition to producing expensive pee). Unfortunately, the symptoms of overdosing are similar to a lot of conditions we already have: cramps, nausea, & vomiting, along with poor appetite, constipation (possibly alternating with diarrhea), weakness, weight loss, tingling sensations in the mouth, confusion and even heart rhythm abnormalities.

In general, it's a good idea to get checked for Vitamin D (and Vitamin B-12) deficiences as part of regular blood work... besides, the mega-doses (e.g. 50,000 IU) are cheaper to buy & easier to swaller with a prescription version.

Best wishes to all!

Karen
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Re: Super Low Vitamin D

Postby toport20 » Mon Mar 26, 2012 9:55 pm

just a fyi, I'm a 50,000 IU every other day too. I also have a low thyroid. I dunno go figure... lol
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
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Re: Super Low Vitamin D

Postby Andrea » Tue Mar 27, 2012 6:43 am

This is super interesting. I had to go off dairy as it was bothering my ds (I'm nursing him) and I said that my flare up began then jokingly blaming it on having no dairy. Maybe there is more of a correlation than I think. I'm going to start with a small supplement and make an appointment with the dr for some bloodwork
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Re: Super Low Vitamin D

Postby cluelessinAZ » Thu Mar 29, 2012 9:29 pm

Well I definitely don't advocate self-diagnosing. I have been diagnosed on a few different occassions over the last few years with vitamin d and b12 deficiency. My last labs about 3 months ago, in fact came back on the very low side, so my PCP told me to take supplements. I am currently going in to the PCP once a month for the b12 shot, and take the pill a few times a week. My PCP told me due to my deficiency I should take 1000-2000 IU a day, and if I wanted I could take up to 4000 IU daily, and it would still be safe. I started out with a little bit of caution, only taking 1000 IU a day. I am now taking 3000 IU a day, and I am noticing that alot of the widespread pain is reducing. It doesn't seem to be affecting my head and neck pain though.

My thoughts are this....I have labwork which shows I am deficient, I have multiple issues that may or may not be related to the deficiency, and as long as my PCP advises me to take up to a certain amount, then I have to trust them, and hope that the multiple issues disipate due to taking the supplements. I just thought it to be interesting that there are published artlicles regarding a connection between chronic pain and vitamin d deficiency.

I will definitely advocate that everyone should discuss this with their PCP, before suddenly deciding they are deficient, and decide to take large amounts of supplements hap-hazardly. But at least, this is some food for thought.
Dx'd CM/SM 01/07, DDD, minor scoliosis, Klippel-Feil, hypoplastic vertebrobasilar system,Occipital Neuralgia, mild cervical stenosis, several buldging/protruding disc through c-spine & l-spine, mild osteoarthritis, Hashimoto's Disease, FMS
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