Vitamin D Deficiency

After diagnosing me with PBC, my doctor ran a Vitamin D 25 Hydroxy blood test, and it came back too low. I started a medication last night. It's once a week 50,000 IUs of Drisdol Vitamin D2. Any one know anything about this? What has been your experience with it? I feel great today, but it might just be that I'm having a good day (finally).

23 Replies

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  • Hi Chynablue. I had to take vitamin D last year way before I was diagnosed with PBC. It was Ergocalcifero 50,000 once a week for 3 months. I know it isn't the same med as yours but, I did feel better after I started them. Hope this helped.

  • Yes it does help. Thanks Lisa :)

  • I dont know about all the fancy stuff you people are talking about. I just use Vit D that I buy over the counter, also Vit A, E and K2

  • The year I was about to be diagnosed (2010) my GP mentioned Vitamin D and said I could go to the chemist. At the time wasn't sure about any reading of the blood check he did. I asked at the chemist and the calcium that you can buy at the pharmacist (not a product on the shelves) was quite expensive. I left it and asked the GP what he was on about and that if this calcium was so expensive could he give me a script for it as it would be a lot less in money (I have always had to pay for prescriptions).

    He just informed me I could buy calcium with Vitamin D cheaply off the chemist shelf. I didn't actually bother buying any. Not long after I was diagnosed with PBC and the consultant took a Vitamin D check and when I received his letter he stated that it 'wasn't too bad' adding ' a bit low'. I rang his secretary and asked if she had a figure so I could see. She sent me the blood results and the Vitamin D was on the line. The consultant had mentioned in the letter I could take Vitamin D if I wanted to but at the time he wasn't recommending. I spent more time in the some several months later and at a recheck mine was found to be perfectly adequate.

    I have since diagnosis the odd time taken a calcium with Vitamin D tablet if I've experiences a bit of heartburn at times (I never had this pre-urso but encountered it badly for the first few months on urso). I know the calcium and Vitamin D as you've mentioned is very cheap at the chemist or even supermarket where I got mine. I think the only difference with the one that is maybe on a prescription or the dearer' stuff' bought from the pharmacy would be the milligrams, probably a higher dosage. I personally have tried to avoid taking any supplements unless necessary as I think it is just more for my system to deal with. I am a bit wary of the additional fillers that are used in medications and supplements and think in the early days of urso it was maybe the fillers that was the cause of the temporary side-effects that I was encountering.

  • Hi Peridot, my doctor agrees with you regarding unnecessary supplements.

    You might be right about the fillers, too. My Ursodiol is a capsule made by Watson. I've been on it 5 days with no side effects. Normally I'm pretty sensitive to new meds, but I actually feel better. Maybe they improved the fillers or removed them since then.

  • Hello once more chynablue.

    When I originally started taking urso Dec 2010 I was prescribed 300mg tablets of which I took 2 daily. I had a few initial side-effects that vanished within 3 months.

    Over 2 years ago now the 300mgs were withdrawn, there were no more by this pharmaceutical so I had to accept firstly generics of which I had a rather bad side-effect of constant heartburn after taking so much so that 4 months later I asked the GP to prescribe me the brand in 150mgs (Destolit) as I originally got these when my 300mgs were withdrawn. The pharmacy who gave them to me by brand then said I could no longer have them on my return around 84 days later (I had no side-effects from them) as my prescription was written generically (as in 'ursodeoxycholic acid' plus the mgs) so a pharmacy can give a patient genercis or brand whatever they have but also it is all down to costings.

    It was then I did a bit of research and found differences in the urso that was available in the UK. There are some variables between some and it was more than likely that one filler wasn't in my original urso and the brand I now have.

  • Yes, quite fancy. Heeheehee that made me giggle :). Thanks Rockie

  • I was dx with low vitamin D, not sure if the brand makes much difference, but I was prescribed vitamin D3, at 20,000iu 3 times a week for 3 months then a maintenance dose of 1,000iu which I still take 2 years later.

    When i had this reviewed after 3 months my GP didn't beleive ME when I said it made a big difference after 4 days and said it takes weeks but I do know it helps and it's important to maintain your levels.

  • I believe you candy12! Cause I feel better too. It seems logical that if you have a deficiency in your blood, then take the vitamin you were missing, you should feel better. Doctors don't know everything.

  • I believe this is normal procedure when the Vit D is sufficiently depleted for medics to consider that something more quick, proven and long lasting is required than whatever could be achieved by over-the-counter products.

    I may be wrong, but I think it's also done when the issue is not just about the amount of Vit D that is needed (and which may not be achieved safely and quickly with the o-t-c forms) but also if it's more a question of absorption. With PBC, the absorption of fat soluble vitamins, such as Vit D, is affected, and I understand that the injected form is much more appropriate in such cases.

    If you have any doubts I would phone/email the PBC Foundation (link to their site at the top of the page, with contact details easily accessible) and talk to one of their advisors.

    However, if you check back through other posts on this subject, I think you will find confirmatory posts from other PBC sufferers, with low Vit D, who have received this treatment.

    Hope this helps, take care.

  • That makes sense Gritty Reads. I have been taking a multivitamin with vitamin D in it, up until my doc told me to stop all supplements 4 weeks ago. So I don't think its a dietary or sunshine problem. The intake is tgere. Its most likely an an absorption issue.

    I did some reading. This article was pretty good: health.harvard.edu/mens-hea... I like the section "How your body makes Vitamin D". The blood test looks for the form of Vitamin D after the liver converts it, the 25-hydroxy form. That was the form that tested low for me. It appears the liver isn't doing its job (no surprise there). So I could be getting the Vitamin D I need, but my body's not converting it to the usable form.

    I'll keep looking into it.

  • I used to have my Vit D level checked on annual basis & GP always followed up with Vit D injection as my levels were always low. I found a benefit within a short period. Energy & mood improved as a result. I since have been dx with Osteopaenia & am on Calcium & Vit D tablets. Keep on top of Vit D as Osteopaenia /Osteoporosis is common with pbc & Vit D helps with absorption of Calcium. Hope you continue to have many good days with your med!

  • Hi Belgravia, yes I am having a bone scan today to check for osteoporosis. Hoping for good news :)

  • Hi Chynablue. It sounds like you are under good care. It's better to know ASAP if osteopaenia or osteoporosis is an issue for you & you receive treatment if necessary. Hopefully the scan goes well.

    Best Regards.

  • Most people here in the UK are vit D deficient due to our weather.... so get out to the sun as soon as you can. I think they reckon 20 mins a day is all we all need.

  • Sounds like a good plan! Some fresh air and sunshine would do wonders right now :)

  • wheres the sun, I cant find it, LOLX

    instead of writing a scipt for vit D, they should send us all on sunny holidays, now that would be a good idea , all on prescription of course

  • I been taking vitamin D since 2013 for the same reasons. My liver doctor told me the liver biopsy was negative for PBC. Now, I'm more confuse than ever.

  • When i was diagnosed with Pbc recently my specialist wouldnt give me urso but prescribed me ADCAL-D3 caplets 750mg/200 i.u Take 2 daily which is vitamind and calcium combined

  • I would seek another opinion

  • I've always had a low vitamin D level for last several years. No one knew why, since I grew up in the sunshine, and am tan year round. Wondering if this was an early onset of PBC after an infection I had in 2005 that nearly killed me.

  • Vitamin D deficiency is common in people with liver issues, especially if they complain of fatigue and tiredness. Are you taking a supplement?

  • I'm beginning to wonder if most w/PBC are Vitamin D deficient? I've struggled with low levels of Vitamin D for years! I have begun to take Carsons fish oil everyday now. It's helped me in the past so I've started it up again. I've done a high dosage of Vitamin D from my doc years ago, it was high dosage to lower dosage over short time, so what you're doing sounds like what I did years ago.

    Unfortunately my levels are still low so it helped for that time only years ago. Once I stopped the high dosage due to pregnancy, I was low once again.

    Carson's brand of fish oil is what I take now.

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