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Sjogrens Topics => Living With Sjogren's => Topic started by: Rhonda on October 14, 2010, 08:21:46 AM

Title: Vitamin D Deficiency
Post by: Rhonda on October 14, 2010, 08:21:46 AM
My last bloodwork shows my Vitamin B12 level is nearly non-existent and my Vitamin D level was <8  which my rheumy said IS non-existent and needs aggressive therapy.    I eat very healthy,  get Vitamin B12 shots weekly and now on Vitamin D 5000 iu daily.  What's this all about?

I am so frustrated - it seems I just can't seem to get lined out and feeling better.  When I read about all the dangers of Vit D deficiency, it's scary but, I try not to think about it so as not to stress out.   I finally scheduled an appointment with the GI dr to see what his take on all this is.

Anyone else having problems with Vitamin deficiencies?  Particularly Vitamin D?

Thanks. 
Title: Re: Vitamin D Deficiency
Post by: LizPetillo on October 14, 2010, 08:45:15 AM
I've got no Vit D.
They wanted me on 50,000 a day.
I said no way.  Kidney stones!!
I was taking 1,000 a day until April when all this sjogrens hit.
I suppose I should go back to taking the vit D tablets.
It's just that I'm reacting to everything now ... I'm nervous.
Title: Re: Vitamin D Deficiency
Post by: Scottietottie on October 14, 2010, 09:14:07 AM
Hi  :)

I'm on a Vitamin D supplement. Mine was existant - just not enough of it and I'm quite happy to take a presribed supplement as I really don't want to end up with 'rickets'.

Very low B12 can be another autoimmune condition called pernicious anaemia. My sister in laws both have as did my MIL and also my best friend. B12 shots seem to keep them going.

I put my low Vit D down to avoiding sunlight as it is the best way of making Vit D - but not if it makes us ill!!

Take care - Scottie  :)
Title: Re: Vitamin D Deficiency
Post by: livewssj on October 14, 2010, 09:39:35 AM
HI, I was also on Vit D 50,000 iu weekly for about 9 months. Now, my Vit D is up and only have to take it once a month for now.
I did not feel any difference with all my symptoms.
Title: Re: Vitamin D Deficiency
Post by: sewandsew on October 14, 2010, 10:07:34 AM
Yep.  Low vitamin D also.  Take supplements.  Also take B12 shots and sublingually.  It's the lack of sun I fear.
Title: Re: Vitamin D Deficiency
Post by: Rhonda on October 14, 2010, 10:50:45 AM
Interesting... oh the joys of SJS!  My rheumy wants me to see the GI doc just to be sure... but at age 51, I know he is going to want to do that darn colonoscopy - and I am not interested in going there!  LOL!!!

Thanks guys!
Title: Re: Vitamin D Deficiency
Post by: kwolfsheimer on October 14, 2010, 10:53:34 AM
I was on prescription Vitamin D, then took supplements.  Then I started taking the Calcium wit Vit D, but stopped that after I heard a report that calcium supplements can cause build-up in the arteries for women with a history of stroke/heart attack in their family. I not menopausal yet, so my doc said it's OK to lay off the calcium for a bit.  I need to get back on the Vitamin D, but haven't been tested in a while.

I know that I have heard the buzz about Vit D deficiency being linked to auto-immune, cancer, fatigue, and other things.  

Even if you are eating well, drinking milk, and all that jazz, you may still have a deficiency.  But after bringing up your levels, you may be able to cut back to just a multi-vitamin.
Title: Re: Vitamin D Deficiency
Post by: Hypermobius on October 14, 2010, 11:09:38 AM
You know I was going to recommend tanning beds, as some studies have shown them to be as effective and in some cases more effective at replenishing vitamin D levels than oral supplements......But, I guess the whole light sensitivity thing from plaquenil pretty much kills that idea.

That's the exact reason why I haven't started my plaq dosage yet...I too have vitamin D deficiency that I'm trying to overcome by a little time in the sun as well as 5000 IU supplements. I want to squash this before it gets worse and I hope this helps before I start my plaq regiment.
Title: Re: Vitamin D Deficiency
Post by: Rhonda on October 14, 2010, 11:33:02 AM
I wish I could do the tanning beds... however, I break out in a rash from head to toe when I get near those things.  The sun pretty much does the same thing too... even before I started Plaquenil. 

I started the Vit D and am giving myself the injections of B12.  I just hope we can get the levels back up before any damage occurs.  Rheumy says low vit d is associated with several different disease processes. 

I have been trying to sit on the front porch - just out of the sun, but outside.  Hope that helps!
Title: Re: Vitamin D Deficiency
Post by: Navigator on October 14, 2010, 12:11:46 PM
There are some people who genetically are predisposed to having a hard time absorbing Vit D from the intestines from food.  Cholesterol increases the absorption of Vit D. in the body soooo....high cholesterol means you are able to absorb more Vit D....but most of us are taking drugs to lower our cholesterol...so..between the two...and sunscreen,  we have low Vit D.   I too had low Vit D. and took 50,000 IU every other day for three months.  Now I take 2000 IU per day which is what most researchers believe will be the new recommended dosage for those over 50. 

I had no side effects taking either level but when you get into the 50,000 IU range need to do that with doc. supervision.  Last time I checked my level was 43.   Below 30 is not so good.

If you live north of I think it is the 34th latitude there is not enough sun from late fall to late spring for your body to manufacture Vit D. sufficiently.  I think that is somewhere south of Tenn. but I could be wrong on that.

Given all the things low Vit D. can result in seems to me to be something to getga handle on.
Title: Re: Vitamin D Deficiency
Post by: Babs659 on October 14, 2010, 02:37:55 PM
Well, my D was very low (11) and I was getting plenty of sunshine and my total cholesterol is about 230, so I don't know about those causes.  My ferritin level was also 11, so I'm thinking malabsorption (?)
Title: Re: Vitamin D Deficiency
Post by: Scottietottie on October 14, 2010, 04:58:20 PM
Hi Hypermobius

I got sensitive to the sun way before I was on Plaquenil. SjS can cause sensitivity all on its own. Another one of those things that can be individual rather than one size fits all.

Take care - Scottie  :)
Title: Re: Vitamin D Deficiency
Post by: inga on October 14, 2010, 05:27:55 PM
Low Vitamin D is linked to pain.

http://www.medscape.com/viewarticle/516238_2

I think this link will work since the article was on public domain, not in the subscription service.
Title: Re: Vitamin D Deficiency
Post by: inga on October 14, 2010, 06:50:46 PM
One more thing, you may want to have your kidneys checked.  Low vitamin d is associated with acidosis.

Also, net search osteomalacia, a potential outcome of low vit d.
Title: Re: Vitamin D Deficiency
Post by: Patze on October 14, 2010, 07:01:21 PM
Oh yes, have been taking a 50,000 pill once a week for shoot, six or seven months straight now, and I still have a low level, ugh. :-\


Patze
Title: Re: Vitamin D Deficiency
Post by: Catilee2 on October 14, 2010, 08:48:03 PM
Rhonda,
   My Vit D is almost up to normal. 2 years ago my GP checked it because he said studies show many people are deficient in Vit D, especially fair skinned, light haired sun-sensitive people and people with gastro-intestinal issues. I fit both categories  and live in a northern State(VT) and am over 60.  It was way below normal.
He put me on 1000 units a day indefinitely.  Last year he upped it to 2000 units for a while. I also take Citracal Plus( has Vit D and magnesium in it)  He also suggested  about 10 minutes in the sun before 10:00 AM or after 4:00 PM during non-winter months.
 Last set of blood work(in July) it was just below borderline normal.
 My gastro suggested that I up th Vit D every other day. I go for my regular GP visit in Jan, who knows what the number will be.  I hope yours returns to normal faster than  mine is doing.

Catilee 2
Title: Re: Vitamin D Deficiency
Post by: irish on October 14, 2010, 09:19:17 PM
I just got diagnosed with low VIT D a month ago when I had my appt with my immunologist. He put me on 50,000IU  once a week for 2 months and then I have to go on 2000 !U every day.

They are discovering that low vitamin D is associated with many disease processes including increased risk of cancer and heart disease. I would imagine there are many more problems to be discovered.

One thing that interferes with absorption of vit D is using sun screen. I wear sun screen every day on my face per dermatologist directions. If I go in direct sun I put it on my arms. I think that it is one of those things that just doesn't work the way it used to. Drink milk, be in the sun and make Vitamin D. Wouldn't surprise me at all if the processed foods play a part in all of this. That or we could blame it on stress cause heavens knows we all that that!!!!

I know that we havae to be careful with our dosage of D and I am not going to worry at this point. I will talk with my doc again down the road. Good luck all of you wishful sun worshipers!!!Irish ;D
Title: Re: Vitamin D Deficiency
Post by: susanep on October 14, 2010, 09:36:44 PM
Here is a link about vitamin D and the importance especially if you have thyroid issues which I do.

http://thyroid.about.com/b/2010/09/30/vitamin-d-important-thyroid.htm?nl=1

susanep :)
Title: Re: Vitamin D Deficiency
Post by: susanep on October 15, 2010, 10:29:00 PM
bttt
Title: Re: Vitamin D Deficiency
Post by: Spider on October 16, 2010, 08:51:07 AM
Hi

I have low Vit D,(low calcium too) my Rheumitologist said it wasn't important. My Endocriniologist said it must be treated with a one off injection for the year. My Doc has two letters one saying give me the Vit D and another saying I don't need it. So my Doc says no injection, but I can have tablets one a day.
Title: Re: Vitamin D Deficiency
Post by: irish on October 16, 2010, 09:39:54 PM
I'm assuming that you are referring to the injection that is given to promote bone health due to calcium loss. Many people just take the tablets every day and be done with it. I am not too keen on having an injection that lasts for one year. Really makes me nervous even thinking about it. It just seems too far out to me.

I am surprised that your rheumy doesn't treat low Vitamin D as it is necessary for bone health plus prevents a lot of other health issues. Seems like low D also contributes to fatigue. Hope I have that right. Irish ;D
Title: Re: Vitamin D Deficiency
Post by: Bernice on October 16, 2010, 10:19:44 PM
Let's not forget the dreaded brain fog/ memory lost as a result of low vit. D!
Title: Re: Vitamin D Deficiency
Post by: wiccagal on October 16, 2010, 10:38:38 PM
Eggs...  eggs are a great source of Vit D.  I had a Vit D deficiency and my partner got some chooks to keep in the back yard.. after 6 months of free range organic fresh eggs at lease 3 a week and some moderate sunshine  my Vit D levels are really really good!!  my Doctor was really surprised when she  asked me if I was taking supplements and I said no.  Mind you I can't eat them in the morning otherwise I get the dreaded planiquenil tummy
Title: Re: Vitamin D Deficiency
Post by: kellyptyler on October 17, 2010, 06:51:32 AM
I take prescription Vit D...100,000 a week
Title: Re: Vitamin D Deficiency
Post by: Spider on October 17, 2010, 08:27:57 AM
Hi irish,

Apparently you can have a years worth of Vit D in one injection, it must be slow release, my doc said no way. I no longer see my Rheumi due to a disagreement in treatment.

A lack of Vit D & calcium can make your depression really bad.

Take care all.

Wishing everyone a pain free day.








Title: Re: Vitamin D Deficiency
Post by: lighthouse33 on October 17, 2010, 01:11:59 PM
Yes, I agree with irish.  I asuume you are referring to Reclast, the once a year osteroporosis injectable drug.  It was recommended to my mom that she take this.  I did research on the Internet for her.  Here is one of the sites that lists patient's reveiws about all the side effects:

http://patientsville.com/rx/reclast.htm

After we read what was discussed there and the fact that the drug goes directly to the bone and if you have a bad reaction or side effects there is nothing they can do for you because it is in the bone, you have to wait for the medicine to run its course, which is one year.  

Also, this week the Wall Street Journal came out with an article against Reclast.  So, mom has decided not to take it.

Forgot to mention that mom talked with a friend who hers who is a nurse that said one of her friends had a bad time with Reclast.
Title: Re: Vitamin D Deficiency
Post by: Sheltiemom on October 17, 2010, 02:03:09 PM
The effective form of Vitamin D is as D3; the effective form of B12 is as methylcobalamin.  These are easily researched on-line and not on sites that sell them.  There's information on side effects regarding dosages, etc.

Nobody here mentioned which forms they're taking, so just throwing the above info out there. 
Title: Re: Vitamin D Deficiency
Post by: Rhonda on October 17, 2010, 02:23:45 PM
Wow... lots of information!  Thanks!  I am currently taking 1000 mcg of Vitamin B12 via injection once weekly, and Vitamin D3 5000 iu daily - at the direction of my rheumy.  He was very concerned that my  levels were so low - both were way below normal - but the Vitamin D was literally non-existant - the lab used a value of >8 as a deficiency - and mine was actually "none detected".  I was astounded because I eat very healthy - lots of greens, eat cheese - not a big milk drinker, and spend some time outside daily - when sun isn't so bright due to my sun sensitivity.  So, whatever is causing this is baffling.

My rheumy is sending me to a GI doc to check things out.  He said I am at increased risk for cancer, heart disease etc and said the low vitamin d also contributes to my extensive brain fog and pain.  I will go to the GI doc on Oct 29th.  I wanted to go to a GI doc anyway to discuss the possibility of Celiac disease or other GI problems.  Now my rheumy is insisting I go. 

I haven't noticed any side effects with the Vitamin D3 or the Vit B12 injections, but I am concerned about the possibility of kidney stones.  I have a history of kidney problems as a child and throughout my life.... 

So many questions - so few answers.....

Thanks everyone for your comments, suggestions, and for sharing your knowledge.  This past couple of years has been a living nightmare - my doctors were beginning to think I was nuts, I think - but the labs are proving I have valid reasons for my complaints.  Little consoloation for me.
Title: Re: Vitamin D Deficiency
Post by: Chris58 on October 18, 2010, 02:58:41 PM
Hi Everyone.  I was on Vit D supps , high doses, as my blood work showed no Vit D.  Won't go into the reasons why, but could not take it.  Cannot take the shots.   The naturopath I am using told me I didn't have to sit outside in the sun as I had been told........I could just sit in front of the window for about 10 minutes per day.  My diet has only a small amount of rice milk per week, and that has been a recent addition.  I am not eating dairy at all.  The sun exposure received from "window sitting" seems to be working great for me.  Energy level went up, etc.

Realize it won't work for everyone, but it has helped me.  Chris
Title: Re: Vitamin D Deficiency
Post by: meow on October 18, 2010, 03:26:34 PM
I have been on 5000 mg Vit D for several months now, and I do stick my scary white legs out in the sun for a few minutes a day, 3 out of 4 seasons.  I am lucky, my legs don't have the same sensitivity as the upper half. D has helped with fatigue a bit. I'm hoping the sunshine will poke my body into boosting its own production, but taking the tiny gel cap is no big deal, and it's not expensive. D is supposed to help with weight loss, too, but no such luck. My last labs showed my thyroid was wacking out again--wavering from hypo to hyper and back these last 6 months. I still don't lose weight. SIGH.

I went for a massage last week, first time in 6 years. I felt great for days. I think I might have to do that more often.
Title: Re: Vitamin D Deficiency
Post by: inga on October 18, 2010, 05:15:03 PM
Some people have metabolic disease that impedes absorption of Vitamin D, which is really cholecalciferol.

No those IV osteoporosis drugs will not fix this problem, and you could not pay me to take those.  Osteomalacia and osteoporosis are not the same, altho you can have both.  Osteomalacia is a lack of mineral content in bone, making them prone to stress fractures....and RIB pain is part of it.  Osteoporosis is brittle bones.  Either way, I am inclined not to take any of the osteoporosis drugs.  They don't know enough about bone metabolism yet to be tinkering long term with these things.

Also, medications can cause mineral loss.  Sometimes it is not as simple as just not enough Vit. D, it is a complex of issues.  Acid /base balance of the blood plays into it too.  dRTA results in poor Vit. D metabolism.

Sunshine is a good way to replace Vit D, but, in cold climates it is hard to get enough.  I am outdoors a lot, with NO sunscreen and still got low Vit D this year.  I raise organic eggs, so, we shall see if that makes a difference....with having dRTA, I doubt it, but I will do what I can to stop this, as it is about way more than bone.

Make sure you are supplementing with D3.
Title: Re: Vitamin D Deficiency
Post by: Pegasus47 on October 19, 2010, 04:52:46 PM
Hi all:

I have been taking Vit D capsules for years- mostly 2000 IU/day.  My blood level is at 83. 

When I feel a cold coming on- I go to 50,000IU/day until symptoms are gone.  Then back down to 2000IU/day.

We don't get enough sunshine and Vit. D is critical for immune defense.

Go for it

Pegasus
Title: Re: Vitamin D Deficiency
Post by: irish on October 19, 2010, 09:23:30 PM
I am concerned about taking too much vitamin D when all is said and done. It is oil soluble so that means that it stays in our system and is not excreted like water soluble vitamins. Anyone have any research, information about this aspect. Irish ;D
Title: Re: Vitamin D Deficiency
Post by: inga on October 20, 2010, 07:23:22 AM
One can take too much and this was always my concern. 

I figured with working outdoors for half the year, I got enough D.  I was really shocked when they did my D this year.  From now on, I will have it done twice per year, at least.  It is so darn dark and cold here for 6 months per year....not to mention, I wonder if my skin absorbs it as it should....I wonder if my GI system absorbs it too.  I know with the acidosis, it isn't absorbed as well.

I always thought the D thing was hype, but no one could explain the bone pain, which is slowly diminishing now....we will see.

I need a bone scan still....I want a base line and to see if there is progress.

But yes, one can take too much D and blood level needs to be monitored.  There are two D tests, and the '25' is the one to watch, the '1,25' one is meaningless from what I read.  My '25' one is down to 23, and 50 is the recommended cut off according to resources.  Low D is associated with bone fractures, and I have had several, including a non-union, which took a year and a bone stimulator to 'heal'...when I went  in for a scan to see progress, they told me I had a new one!  Also it is associated with bone pain, which I have and thought it was neuropathy.

Anyway, make sure they do the proper test for Vit D.

I have seen now a few rheumatolgoists that are specializing in D metabolism disorders.  I am going to look at seeing one of these.
Title: Re: Vitamin D Deficiency
Post by: Spider on October 20, 2010, 07:36:21 AM
Hi

I quite agree sitting at the window in the sun or being out in the sun is the best way to keep your Vit D up. The problem is for me, is that I have SLE too and that is sun sensative so I shouldn't be out in the sun without sun protection. So it will have to be the tablets for now.
Title: Re: Vitamin D Deficiency
Post by: Livvie2 on October 20, 2010, 09:04:41 AM
This is an excellent discussion on Vitamin D.   (Also, Susannep: thanks for the link to the Shoman article.) 

It reminds me to keep up with the Vitamin D Supplementation.

I live in  California, spend time outside, plus drink milk--so I was very surprised when I was first diagnosed with Hashimoto's that my Vitamin D levels were fourteen.
I supplement with Nature's Blend Vitamin D-3 (which is a liquid) (about 5000 units). I mix that into a concoction.  My levels went up to 30, which is low normal.
The 50,000 unit green pill that the doctors prescribe is a different form of Vitamin D (Vitamin D-2 I think) which some experts think is not as effective.

Livvie2
Title: Re: Vitamin D Deficiency
Post by: inga on October 20, 2010, 09:14:50 AM
It has to be D3 from what I understand.

Interestingly my mom had severe vitilgo.  I have a bit, but not like her.  I wonder if any of this relates.
Title: Re: Vitamin D Deficiency
Post by: DSPeter on October 20, 2010, 04:35:18 PM
Is it normal for a Dr to do a Vitamin D test after a diagnosis of Sjogrens?  Or do I need to ask?   I was just recently diagnosed.  Dr told me that he would run more tests at my appointment in December.
Title: Re: Vitamin D Deficiency
Post by: inga on October 20, 2010, 05:16:44 PM
I would ask.  I will be monitoring mine from now on.
Title: Re: Vitamin D Deficiency
Post by: Patze on October 20, 2010, 05:25:48 PM
Hi DSPeter,

Inga is right, sometimes you have to ask if it's not automatically done.

I have mine tested 3-4 times a year because the level will go up to the lower 40's/upper 30's and do the downward slide every time to 14-16 range (no doctor has been able figure out why).  Just had another test done last week, and I'm waiting to hear what this one is...

Take care of yourself -

Patze
Title: Re: Vitamin D Deficiency
Post by: irish on October 20, 2010, 09:55:39 PM
I just started the vitamin D a couple weeks ago and the green capsule is D3 according to the label on my prescription. Irish ;D
Title: Re: Vitamin D Deficiency
Post by: Spider on October 21, 2010, 07:22:32 AM
Hi Peter,

Its not very common to have your Vit D tested in the UK, mine was only done as I was getting cross, as I was being told there was nothing wrong with me and I wanted to see a Lupus specialist.

My Endo was very concerned as he thought I may have problems with my parathyroids.

I take Calcium and Ergocalciferol just one a day to see if it makes any difference.

Go back to see Endo in Dec to see what next.
Title: Re: Vitamin D Deficiency
Post by: Scottietottie on October 21, 2010, 09:05:03 AM
Hi Spider  :)

I'm in the UK too and I had to jump up and down and make a fuss before I could persuade anyone to test Vit D. My GP refused and then a neurologist refused. Six months later I asked a rheumatologist about what I'd read on this site. He's Canadian and likes patients doing their own research. He tested me and I took immense satisfaction in telling both my GP and neuro that I was low in it - as I suspected. Sjogrensworld rocks!

Take care - Scottie  :)
Title: Re: Vitamin D Deficiency
Post by: Spider on October 22, 2010, 12:14:03 AM
Hi Scottie,

My GP said he wasn't allowed to test Vit D as that was a consultant level blood test.

I am now without a Rheumi, yours sounds like a good one. I wish we could interview Rheumi before we spend years seeing them. I found it very difficult to get rid of my last Rheumi, and to have a choice doesn't seem to be that easy.
Title: Re: Vitamin D Deficiency
Post by: Joe S. on October 22, 2010, 04:49:46 AM
My endo is the one that asked for a recent D test. I take D3 because of the literature that I have read. I believe it came from this website http://www.lef.org/

There was a book "Life Extension" that I read on the Biochemical workings of the body that I found very interesting. If I find it in the stacks again it may make and interesting review.
Title: Re: Vitamin D Deficiency
Post by: meow on October 22, 2010, 10:54:19 AM
Is it normal for a Dr to do a Vitamin D test after a diagnosis of Sjogrens?  Or do I need to ask?   I was just recently diagnosed.  Dr told me that he would run more tests at my appointment in December.

Mine did, because low Vitamin D is associated with fatigue. I have to say that since I started taking 5000 mg daily, in 3 months I have noticed a definite improvement. I still get tired, especially if I haven't gotten enough sleep for several days, but I don't get that leaden-bodied , bone-crushing fatigue.
Title: Re: Vitamin D Deficiency
Post by: Patze on October 22, 2010, 06:03:53 PM
Saw the internist the week before last and had some more blood work done, and as usual, my vitamin D level has tanked again, and this while taking a 50,000 mg once every other week, double ugh :-\. 


Patze
Title: Re: Vitamin D Deficiency
Post by: Livvie2 on October 22, 2010, 09:15:34 PM
Patze,
 That 50,000 unit pill is a different type of Vitamin D than Vitamin D-3.  You might want to ask your doctor about supplementing with the D-3.  I'm drinking my Vitamin D-3 as I write.

I subscribe to the Center for  Science in the Public Interest's newsletter "Nutrition Action."
Their November 2010 issue quotes Dr. Bess Dawson-Hughes who is an expert on Vitamin D.
This is some of what she says.

"People aged 60 and older need 800 to 1000 IU a day to keep blood levels at 30 nanograms per milliliter. . .

"Sixty percent of people in the US. . . get too little Vitamin D. . . . The most important source of vitamin D is sun exposure. . . .The diet is not rich in vitamin D. There's a little in fatty fish and in eggs, but by and large, most people without sun exposure will need a supplement."

Vitamin D. . . "improves strength in the legs and lowers the risk of falling. Second, it improves bone strength, so it lowers the risk of your having a fracture should you fall."

"Vitamin D is essential for the absorption of calcium. . . .Animals that are totally vitamin-D-deficient cannot form bone and cannot remodel bone. . . ."
Title: Re: Vitamin D Deficiency
Post by: Joe S. on October 23, 2010, 04:22:28 AM
I have been taking D3 for some time now. My latest test (last week) came back as normal with 2000-4000 units per day supplement.
Title: Re: Vitamin D Deficiency
Post by: Epson on October 23, 2010, 06:10:45 PM
60% of the people in the country are deficient in vitamin D, but in some areas it is even higher due to the lack on sunshine (Northern Ohio) and the latitude that you live at.  It took me 2 years to get my vitamine D back to normal levels and I'm still tired.
Title: Re: Vitamin D Deficiency
Post by: tomsmom on October 24, 2010, 09:14:47 AM
I've been on 5,000 for the last few weeks because I was found to be defficient.  It has definitely helped with my energy level.  I still deal with the fatigue, but definitely can feel an improvement.  I walked around a grocery store and a dept store last week while holding my chunky baby (LOL).  That was impossible last year.
Title: Re: Vitamin D Deficiency
Post by: meow on October 26, 2010, 04:50:35 PM
I live where the sun shines 350 days a year, at an altitude of 3500 feet. All kinds of sun here! Because of that I slather myself with sunscreen most days, and have for 30 years.

I sprained both ankles one day last spring ( can't walk and chew gum at the same time), and the Xrays showed osteopenia, which terrified me.

So, this summer I did a few minutes of sunbathing around 10 am every day---just the legs, sticking out on a lawn chair, while the rest of me was in the shade of the patio. I think that, combine with the D3, has to help.
Title: Re: Vitamin D Deficiency
Post by: Sissy on October 27, 2010, 05:36:57 AM
If it helps, I too have RX vitamin D 50,000 units twice a week, also take B12 injections. I has told that it would help with my pain. The vitamin D really gives me a boost. I have heard the B12 does that for some people. I know that on the days I take the vitamin D I will have a hard time falling asleep! Coincidental? I don't think so as it happens every time. I was somewhat surprised to see so many people posting they also have vitamin D deficiency and B12 also.  Sissy
Title: Re: Vitamin D Deficiency
Post by: Prairie Gal on October 27, 2010, 12:03:19 PM
Meow, one of the blessings (?) of getting older is that we don't make Vit. D from sunshine nearly as well as when we're young.  That's apparently why so many people are deficient, not just SjS patients.
Title: Re: Vitamin D Deficiency
Post by: meow on October 27, 2010, 12:33:36 PM
I'm sure that's true, Prairie Gal! Nothing seems to be working the way it used to, so why should I be surprised? ;-D

The leg exposure was actually a public service action. Even though I'm super-white ( my sister says we are "of the pink tribe"), I do insist upon wearing capris and even shorts in the summer. I was boosting  not only my Vit D (almost typed VD,haha), but preventing mass blindness in my neighborhood from the glare...
Title: Re: Vitamin D Deficiency
Post by: jordozmom on October 27, 2010, 12:52:18 PM
I'm right there with you guys.  Originally I was losing/not absorbing potassium which they linked to distal renal tubular acidosis.  Then about five years ago they said my Vit D levels were down and now my calcium levels are down, too.  I take a monthly supplement of Vit D and I take calcium supplements and potassium supplements daily, plus I take a multi-vitamin.

In addition to the SJS and sensitivity to sunlight thanks to plaquenil, I am also red-headed, fair skinned and burn very easily, so I basically avoid the sunlight.  My friends crack up at me because I'm not a fan of "outside" anyway.  I hate to be hot or cold, I hate bugs, I hate getting dirty, I now have allergies, and I burn easily.  Not a fan of swimming, either, since I look terrible in a suit and my skin gets so dry from chlorine.

Sooo I get my Vit D from supplements.
Title: Re: Vitamin D Deficiency
Post by: Rhonda on October 29, 2010, 06:01:00 PM
UPDATE:  I saw the GI doctor today regarding the Vitamin D and Vitamin B12 Deficiency.  He was concerned about it and ordered a liver ultrasound.  He explained that Vitamin D is processed in the liver and he wanted to be sure the liver is fine.  Of course, he also ordred a colonoscopy (ugh), and I reluctantly agreed.  I do have a family history of colon cancer (paternal grandmother and maternal uncle). 

Interesting - the GI doctor said anyone on Methotrexate should have a liver ultrasound to make sure all is ok.  Whether this is protocol or just his personal opinion, I am unsure; regardless, I am having one soon. 

Has anyone else had a doctor tell them any of this?
Title: Re: Vitamin D Deficiency
Post by: Linda196 on October 29, 2010, 06:25:17 PM
When I started taking MTX, my rheumy told me he was in the process changing his monitoring all MTX patients with an accumulated dose of about one to 1.5 gram, from a liver biopsy to ultrasound.

Previously, a biopsy was commonly performed at that stage (accumulated dose total of 1 to 1.5 GM) on all of his MTX patients, and was common practice for most rheumies. The ultrasound is a much less invasive procedure, and apparently will show any early damage (structural as opposed to the functional changes that would be identified by blood tests) as well as a biopsy would.

Most rheumies also order liver function testing ranging from weekly in early treatment, to every 2 months in established treatment.
Title: Re: Vitamin D Deficiency
Post by: Prairie Gal on October 29, 2010, 06:26:31 PM
Meow, I usually walk first thing in the morning and listen to a recorded book -- my alone time for the day.  When it warms up and I wear shorts, I also use some self-tanning lotion on my legs for the first couple of weeks lest, like you, I blind onlookers with my dazzling snow-white legs!
Title: Re: Vitamin D Deficiency
Post by: Rhonda on October 29, 2010, 07:06:37 PM
Thanks Linda.  My rheumy does order bloodwork every 8 weeks to monitor the liver enzymes, but he has never ordered or mentioned for that matter, a liver U/S or a biopsy.  I have been 15mg of oral Methotrexate weekly since August of 2009. 

I hope the methotrexate is not the reasoning for my Vitamin deficiencies... that would be a double whammy! 

Thanks for the info.   I always find such useful information on this forum!  :-)
Title: Re: Vitamin D Deficiency
Post by: meow on November 05, 2010, 10:51:06 AM
Meow, I usually walk first thing in the morning and listen to a recorded book -- my alone time for the day.  When it warms up and I wear shorts, I also use some self-tanning lotion on my legs for the first couple of weeks lest, like you, I blind onlookers with my dazzling snow-white legs!
Oh, yeah, me too.  The self-tanner has the added bonus of lessening the contrast between the dazzling snow and the veiny  blue road map winding its way around the back of my knees.
Title: Re: Vitamin D Deficiency
Post by: Patze on November 05, 2010, 05:54:49 PM
Hi Prairie Gal and Meow,

What self tanners do y'all use?  My oh so white legs sure could use a bit of color in the winter. :)

Seems that way back when they first came out, I made the mistake and tried one; prettiest orange you ever saw until it wore off! :D


Patze
Title: Re: Vitamin D Deficiency
Post by: Prairie Gal on November 05, 2010, 07:09:17 PM
Patze, I use Jergen's Natural Glow -- I think that's what it's called -- and I think I picked Medium.   I also remember those first self-tanners; bought only one bottle because I never finished the first one.  Orange is right!
Title: Re: Vitamin D Deficiency
Post by: meow on November 08, 2010, 02:14:15 PM
 Yes, I remember the first one. " QT."
 As in Quickly Turns you orange... one friend of mine was orange in general, but there were some GREEN areas, too.
 She also forgot to wash her hands, and her palms looked like pumpkins.

The Jergens Natural glow is good. I use light-medium. I like the kind that has a tint to start with, so you can see what you are putting on. Don't put any at all on your knees or ankles, or put regular lotion first. Otherwise it looks really strange.

Right now, since we are moving into winter, these products are on sale.
Title: Re: Vitamin D Deficiency
Post by: Patze on November 08, 2010, 06:05:03 PM
On sale you say?  Hmmmm, yep, I'm there! :D


Patze
Title: Re: Vitamin D Deficiency
Post by: Rhonda on November 09, 2010, 11:54:45 AM
My rheumy said he could tell my pain was "grossly elevated" because my Vitamin D level was so low.  In an odd way, that made me happy.  I guess it validated my pain.    The Gastro dr says the Vitamin D could be low due to liver function being less than it should be.  He scheduled me for a a liver scan which I am having tomorrow.   

It is strange how such a small thing like a doctor taking you serious can bring such pleasure.

My low Vitamin D level was taken seriously by all of my physicians EXCEPT my neurologist - which is another story some of  you may be familiar with from my previous posting. ::) 

Title: Re: Vitamin D Deficiency
Post by: gphx on November 09, 2010, 04:12:05 PM
Rhonda, the prevailing wisdom for a long time was to blame neurological issues on low D and B12. It still happens. My doctor tells me nothing but 'take your vitamins' not realizing I've done so for a year without improvement. It can be an excuse not to look further.

The flip side to this is neuro issues cause low D and B12 because they are used by the body to repair neural tissues damaged by disease processes.

Your neuro may be used to seeing patients with low D and he may simply recognize the low D as a symptom rather than a cause.
Title: Re: Vitamin D Deficiency
Post by: Patze on November 09, 2010, 05:55:00 PM
Hi Rhonda,

Good luck with the scan and I hope that it helps to point the way to a diagnosis. 

If the gastro figures out why your vitamin D level is so low, don't forget to pass it on, okay?

Take care of yourself -

Patze
Title: Re: Vitamin D Deficiency
Post by: Rhonda on November 09, 2010, 05:58:47 PM
No worries Patze - I will definitely share any information I get.  Thanks!