• Posted by Charlene Marshall on November 7, 2018 at 8:23 am

    Back in March of this year, I created a forum post based on being vitamin D deficient. To my surprise, many of you on this forum who are also living with idiopathic pulmonary fibrosis (IPF) have been told you are lacking or low in vitamin D as well. I had no idea that this could be common among patients living with IPF!

    To be honest, I also had no idea how detrimental and important vitamin D can be to our overall health. I remember being told I was significantly low on vitamin D, and laughing with my doctor about simply going on vacation and spending time in the sun. Her response was that not even this would help me, that I’d need to start taking a vitamin D supplement of 50,000 IUs once per week in order to start increasing that number. Reluctantly, I agreed to start taking yet another medication in addition to the many I already take on a daily basis.

    The more time I spent researching the importance of vitamin D for our overall health, the more I became appreciative of being put on this supplement. I recently read an article on Scleroderma News about the 7 health benefits of vitamin D for scleroderma patients. I’d be willing to bet however that most of these benefits apply to those of us living with IPF as well, if not the entire population in general. I also spent time reading more about the health benefits of this vitamin and came across a really helpful summary on Medical News Today about additional health benefits of vitamin D.

    Quickly summarized, some of those benefits include:

    1. Contributing to healthy bones
    2. Reduced risk of flu
    3. Reduced risk of diabetes
    4. Helps reduce depression symptoms
    5. Vitamin D deficiencies have now been linked to certain increased cancer risks
    6. Strengthening immune system responses
    7. Reducing inflammation

    Have you ever talked to your doctor about your vitamin D levels as a patient living with IPF/PF? 

    Have you ever been told your deficient in vitamin D and been put on a supplement? 

    I’d love to hear your thoughts!

    Charlene Marshall replied 5 years, 3 months ago 3 Members · 8 Replies
  • 8 Replies
  • steve-dragoo

    Member
    November 8, 2018 at 2:19 pm

    The D3 reviews I have looked at have repeatedly suggested taking K2, m7 (not K1) because D3 can put calcium in the wrong places; K2 sends it to the bones. When I first discovered this 3 years ago there was no recommended dosage of K2 as no one knew. K2 can be found in some foods but typically not enough at the time of taking D3. I get my D3 and K2 OTC as prescriptions cost much more.  I trust the sources I buy from as I know supplement quality is not very well regulated

    Here are a few papers of many that may help:  https://riordanclinic.org/2013/10/vitamins-d3-and-k2-the-dynamic-duo/.  https://info.dralexrinehart.com/articles/vitamin-d-and-vitamin-k2-benefits-connection.  https://articles.mercola.com/sites/articles/archive/2013/10/19/vitamin-d-vitamin-k2.aspx.

  • Charlene Marshall

    Member
    November 8, 2018 at 8:46 pm

    Hi Steve,

    Great to hear from you!
    Really interesting, thanks so much for sharing the links for others to read up on vitamin D and the benefits. I also get my supplement from a prescription, they likely cost more but I know the source like you say. I also need a higher dose that I cannot get in over-the-counter pills. Hope you’re doing well, and thanks again for sharing 🙂

    Charlene.

  • bernie-gilles

    Member
    November 9, 2018 at 9:44 am

    Hi

    I’m going through the transplant assessment process right now.

    My last test was bone density . Got a call from gp yesterday tells me i have osteoporosis .Probably from my 60mg prednisone use .

    I have been taking fosivance  and calcium supplements . Even with precautions it’s likely you will have some issues with all the meds prescribed.

    PS : Thanks for being there Charlene

     

    • Charlene Marshall

      Member
      November 9, 2018 at 10:10 pm

      Hi Bernie,

      Thanks so much for getting in touch and contributing to this thread. Welcome again to the forums and our wonderfully supportive community – glad you’re here!

      I am happy to hear you’re going through the transplant evaluation process, I hope that the remaining tests turn out well for you. I am however sorry to hear of the result of the bone density scan … do they just recommend medications and supplements for the osteoporosis management? I hope you’re able to manage it without much trouble and that it doesn’t add to the already-exhausting struggles of IPF. Do you have any pain from the osteoporosis? I hope not.

      Thinking of you, and will keep my fingers crossed that the remainder of the evaluation goes well. Please feel free to write anytime!

      Warmest regards,
      Charlene.

  • steve-dragoo

    Member
    November 9, 2018 at 10:09 am

    Hi Bernie – I have a bone density test soon but r a different reason. I have a flattened pituitary which means my hormones (think endurance and strength) are affected and the bones.  I take D3 with K2 to help bones as I was diagnosed low D a while ago.  The K2 puts calcium in the right place…  Success to you. – SteveD

  • Charlene Marshall

    Member
    November 9, 2018 at 10:20 pm

    Hi Steve,

    Thanks so much for sharing this, even though I know your reply was to Bernie. As a female, I actually have an enlarged pituitary gland (or “prominent” they officially referred to it as) which was picked up on an MRI earlier this year following a car accident. The neurologist mentioned he was just going to watch it and scan again in a few months, but he also gave me some supplements including the large dose of vitamin D. This I suspect will also help with my bones, but just interesting again that this seems to be something more than one of us IPF patients have… the pituitary issue I mean. What is the K2 again Steve? Sorry I just want to clarify as this isn’t something I’m on, it is a vitamin K but a certain IU dosage? Curious to hear!

    Thanks again and chat soon,
    Charlene.

  • steve-dragoo

    Member
    November 13, 2018 at 12:20 pm

    Hi Charlene – sorry I just saw your question to me today. K2 m7 (not K1) directs calcium to the bones where it belongs (yes cells use some calcium too intra and extra cellular). D3 by itself can cause calcium to go to the wrong places such (think cardiovascular plaque).  When I frist started D3 K2 m7 was unknown to me.  Eventually some white papers appeared but they did not know dosage ranges.  Now more is known and here are three references below. I take 200mcg’s per day and recently increased D3 to 3000 iu (about 75 mcg).

    Here are a few papers of many that may help:

    Hope this helps… SteveD

    • Charlene Marshall

      Member
      November 14, 2018 at 10:39 am

      Hi Steve,

      Wow, this is really fascinating! Thank you so much for sharing this with me, I also had no idea about the K2 m7 details you just shared, really interesting. I will try to read the articles you posted soon too… always learning, and I appreciate your sharing your valuable information 🙂

      Thanks,
      Charlene.

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