Vitamin D : Just had a call from GP my last... - PBC Foundation

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Vitamin D

Biddyb profile image
39 Replies

Just had a call from GP my last bloods showed Vitamin D low any tips on which ones to buy. I’m slightly concerned as a couple of years ago my calcium levels were too high whilst I was taking Vitamin D & C prescribed so I was taken off them! The deficiency probably explains my increased bone aches and pains I do have Osteopenia

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Biddyb profile image
Biddyb
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39 Replies
gwillistexas profile image
gwillistexas

I take Nature Made D3.

DVISION profile image
DVISION in reply togwillistexas

Same here. 2000 iu

gwillistexas profile image
gwillistexas in reply toDVISION

My multivitamin has 1,000 iu and I take extra 1,000 when I remember, lol!

DVISION profile image
DVISION in reply togwillistexas

That’s great. Most people tend to have low vit D levels during winter months. I think you can safely take up to 4000iu daily.

gwillistexas profile image
gwillistexas in reply toDVISION

I’ve been fortunate that my d has stayed normal.

DVISION profile image
DVISION in reply togwillistexas

Great. My last reading it was at 31 or 33ng

gwillistexas profile image
gwillistexas in reply toDVISION

Sorry I just saw your reply. . July 2019-46. November-64. Those were my latest.

DVISION profile image
DVISION in reply togwillistexas

That’s pretty good

gwillistexas profile image
gwillistexas in reply toDVISION

In 2010 I was completely depleted of d and b12. Once they came back to normal, they have stayed there. 😊

EileenUSA profile image
EileenUSA

I remember one of members posting about using a Vitamin D3 spray. Are these equally effective? The idea of not taking big tablets is appealing.

LastMinuteLynn profile image
LastMinuteLynn

I take Calcium with D3. At one time I read that the Costco brand was top rated so that is what I take. It is very reasonable.

Biddyb profile image
Biddyb in reply toLastMinuteLynn

Thanks. Will check it out with my GP. Don’t see why I should buy them and don’t want to take the calcium as it caused me a problem last time. Will wait for my LFT results and then sort it.

DeeSree profile image
DeeSree in reply toLastMinuteLynn

Calcium needs vit d to be absorbed not the other way around unless you have very low calcium. Vit d needs magnesium but not the type you take enternally a spray I make my own you can too

janetfolley profile image
janetfolley

I have calcium and D3 combined prescribed by my doctor

Biddyb profile image
Biddyb in reply tojanetfolley

Yep I took those boys for a couple of years and they gave me too much calcium which is not good, will see my GP for advice and prescription don’t see why I should buy them anyway thanks for reply

Yellow_fish profile image
Yellow_fish

I was advised by my consultant to take a regular over the counter multi-vitamin (containing Vit D) together with a prescribed TheiCal-D3 chewable tablet ... but have been reading a lot about vitamins etc on this forum so am interested in following this thread (mainly as I really struggle with the giant chewable theiCal tablet!!).

gwillistexas profile image
gwillistexas in reply toYellow_fish

I also take multivitamin which has d3, but I take additional 1,000 iu approved by my hep.

tinypixie profile image
tinypixie

How about getting some advice from your GP or consultant? My vitamin D was very low and I was given a special course of vitamin D tablets for about 12 days. It really did the job. I needed this before getting a Prolia injection for osteoporosis (caused by PBC). It’s REALLY important to follow up on this. Have you had a DEXA scan recently?

Biddyb profile image
Biddyb in reply totinypixie

Hi, I had a dexascan about 2 years ago which showed Osteopenia. Will make an appointment with GP when my LFTs come back. Just concerned about increasing calcium levels as mine were high after taking Adcal thanks for your input will post outcome

Megamum profile image
Megamum

I have osteopenia (thinning of bones) and am prescribed combination of calcium and vitamin D. I don’t like the chewable so request effervescent just like a lemon drink.

Biddyb profile image
Biddyb in reply toMegamum

Yep I took the Adcal which gave me too much calcium which I thought was good but sadly not as too much can be as bad as not enough. If it’s not one thing it’s another. Guess we just need more sunshine

Candy12 profile image
Candy12

I have fultium D3, 800iu, prescribed by the GP now, And I take one a day.

When I was originally diagnosed I had a course of a high dose vit D 3,for 3 months, then went to 1000iu, as a maintenance dose for about two years before going down to the 800iu, this was all prescribed by the consultant and GP and it still is.

Did the doctor advise what strength you needed, to bring your levels backup to normal. I wonder why he didn’t prescribe them. But I guess mine came from the consultant initially, so he’s following there instruction and continues to prescribe.

Might be worth speaking to the doctor or consultant about it to make sure you get the correct dose for what you need.

butterflyEi profile image
butterflyEi

Hi Biddyb

I use a vitamin D plus K spray from Bodykind. Apparently the K helps the uptake of the D. According to a doctor's presentation from one of the American PBC Round Tables we are known to be deficient in A D E & K. I have copied the link to Better You but you may like to chat to your GP.

bodykind.com/favourites/106...

Biddyb profile image
Biddyb

1000 it was mentioned also that I should buy it. I’m going to see my GP and discuss this just awaiting LTF results to get the whole job done, thanks for info.

shaza1966 profile image
shaza1966

I was diagnosed in 1999 and straight away was put on Uros.....also the specialist said you need to take Adcal D 3

And i have never bought any medication at all the doc's have always supplied me them . Best wishes x

mrspeffer2 profile image
mrspeffer2

Morning....I found these on Amazon and thought I'd give them a try. Great product, very reasonably priced. Love that they use Avocado oil and not soy oil. ALSO....all of my calcium swallowing friends. Make sure you take a good Vitamin k2. Life extension makes a reliable one. This will help keep your calcium in your bones and out of your heart.

Smarter Vitamins - D3 5000 IU in USDA Certified Organic Avocado Oil, 270 Mini Softgels, Non-GMO, Soy Free, 125mcg, Gluten Free, 9 Month Supply $20

Also use the Smarter Vitamins micro minerals....Be well

Socermom profile image
Socermom

I take a prescription D3 once a week. I take a multivitamin daily. I also make sure I drink a small low sodium v8 for the vitamin A.

DeeSree profile image
DeeSree in reply toSocermom

I used to take that

50, 000 iu weekly no improvement for almost 2 years until I started doing lots of research. Even added calcium Nope. My research revealed calcium needs vit d to be absorbed but vit d doesn't need calcium to be absorbed . vit d needs magnesium and you cant take enough magnesium internally to help because it's what you get for a colonoscopy, Recommended magnesium spray , I switched to a 5000 iu daily Nd added my magnesium chloride spray. you can make your own. It has done wonders and not only did my vit d go up, the mag spray took away my thigh cramping , restless legs of my friend and migraine headaches just rub the spray onto any place. where you have muscle spasms , burns, aches and pains, bruises. and it's so easy. (except eyes) It can tingle a bit if you have sensitive skin like I do but it subsides quickly .. I always put it on my feet and rub it in. Blue bonnet 5000iu daily 1 drop on tongue works well with mag spray. I can tell you how to make it later. My vit d normal for several years now..

danaLL profile image
danaLL

I get prescription grade vitamin d from doc. 50,000 ilus. my vitamin d is now above the normal limits and you only have to take it once or twice a week

recipes profile image
recipes

I take D3 5000 daily and for a few years. My blood work is fine and I have no problems taking this much. My Dr. told me to take it.

recipes

DeeSree profile image
DeeSree in reply torecipes

I agree it's a good doseage

Elliweim profile image
Elliweim

I take the gel cap brand called CanPrev, product "D3 /K2 with Coconut Oil" they are 1000iu. I take 4 day due to my PBC per my specialist recommendation. Since taking my Vit D my D went up to 97.

genj65 profile image
genj65

@Biddyb I get the Vitamin D injections which are great I don't have to remember to take a pill. When I first started the injections I was given 1 shot weekly for 4weeks. Then no more were needed for a year so I'm not due for my injection until 03/2020 .

Goodluck looks like you got a lot of suggestions:-)

boneytoys profile image
boneytoys

I take a vitamin d capsule prescribed by my doc once a month. I use a b12 spray

redceader profile image
redceader

f I also was found to be low on vitamin D. GP proscribed four months supply of Folic Acid.

Redceader

DeeSree profile image
DeeSree

I used Blue Bonnett liq vit d3 500 I daily. Find a good quality magnesium chloride spray for bottom of feet and hands rub in good can was off hands after about 15 minutes. Best thing ever for restless legs, cramps in thighs and great to spray on burns. Our body's need magnesium to absorb vit d but most Dr give you oral that isnt what works because its what you get for a colonoscopy . Yikes this is topical. I have used it for burns and not had scarring. Message me again I got to run

Nyiah profile image
Nyiah

I just had labs also and my vitamin d is 15. I have been taking 1000ui a day. I go back to the dr Tuesday.

Pat_H profile image
Pat_H

I buy any Vitamin D3 pills. Some years ago the consultant I had then said he didn't like people taking Calcium supplements as he felt they could lead to kidney stones. He preferred me to get calcium from my food. Then a later consultant put me on AdCal, which had me running to the loo and messing myself when a loo was available at that very minute! So now I buy any Vitamin D3 pills and take calcium from my food. Both my numbers are good.

ninjagirlwebb profile image
ninjagirlwebb

I was low on D when my hepatologist checked upon pbc diagnosis despite D being in my multi vitamin. He prescribed 50,000iu pills which I took once a week for like 8 weeks. Then I maintained with 2,000 iu daily along with my multi vitamin. My D has been normal since. I use the Costco brand which is very affordable & effective.

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