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    • #16717

      Back in March of 2018, I started a topic thread on this forum titled Vitamin D Insufficiency. This was after my Rheumatologist ran bloodwork and discovered I was severely low on this vitamin, and prescribed a vitamin D supplement of 50,000 IUs once per week. To my surprise, after posting this on the forums; lots of others connected back with me stating that they also discovered low vitamin D levels since their diagnosis of pulmonary fibrosis (PF). I wondered at that point if there was a correlation between the two, as we know the plethora of benefits that come from vitamin D.

      If you follow our news page, Pulmonary Fibrosis News, you’ll note a study was released this morning on vitamin d as well. It’s titled, Vitamin D Deficiency Linked to Disease Severity, Mortality Risk in IPF Patients. Interestingly enough, the study cites that vitamin D has been shown to partially prevent lung fibrosis in mice so my sneaking suspicion that the two must be somehow related weighs true according to this new study. What is concerning to me is that I’ve never heard my Pulmonologist mention any correlation between vitamin D and IPF and looking back, I’ve been very deficient in this vitamin for years.

      Have any of your lung specialists / Pulmonologists mentioned a correlation between IPF and vitamin D?

      How many of you have been placed on a vitamin D supplement after learning your low on this since your diagnosis? 

      I see my Rheumatologist again this month and am curious to bring the study along to obtain his thoughts on the matter. I hope to highlight the conclusion of the article which states: “the findings also suggest that IPF patients are at high risk of developing vitamin D deficiency, “and thus should be screened accordingly, for early supplementation treatment and prediction of clinical outcomes”.

      What has your personal experience been with IPF and vitamin D deficiency?

    • #16759

      Same for me Charlene,

      Just checking my lasts blood analysis showing a lower than normal Vitamin D level. This was never stated nor mentioned by my pulmonologist … I will discuss the subject with her during my next visit in  March.

      Jean-Michel

      • #16775

        Hello my new friend,

        Yes, isn’t this so interesting that so many of us seem to have a low vitamin D level and yet none of the pulmonologists bring this up for discussion? I wonder if it is something they are unaware of as well? We can’t expect them to know everything, I suppose. Keep me posted on what your doctor says when you bring up the correlation, if you wouldn’t mind 🙂 I am going to bring this study to my Rheumatologist when I go next week as well. Stay tuned – I’ll post his thoughts after we discuss it.

        Thanks for writing
        Charlene.

    • #16761
      Barbara Schwenzer
      Participant

      Very interesting, Charlene.  My primary care informed me that my Vitamin D is extremely low, along with B12, and thyroid.  She attributed my increased fatigue to this (all prior to IPF diagnosis).  I too will discuss this with my pulmonologist next month.

      Thank you!

      Barbara

      • #16776

        Hi Barbara,

        Thanks so much for writing and getting in touch with us!
        First – your profile picture is beautiful 🙂

        Wow, really interesting that your primary care doctor discussed all of this with you and attributed it to the increase in fatigue. He/she was probably right, it would cause an increase in fatigue as well but certainly makes me wonder about the correlation between low vitamin D and IPF. There has got to be a link in humans (the study was done so far only on mice models) if all of us are experiencing this in addition to our lung disease. Curious to hear what your pulmonologist says too. Do you mind reporting back if you think of it?

        Thanks a bunch and welcome again – glad you’re here!
        Charlene.

    • #16796
      Steve Dragoo
      Participant

      Remember to take K2 m7 with D3.

      • #16808

        Hi Steve,

        Yes, I remember your posting a supplement that you take with the vitamin D and was actually going to mention it in my topic but couldn’t remember which one it was. I was so tired to go back and look so I am glad you shared it with us again. Good reminder 🙂

        Hope you’ve had a nice week!
        Charlene.

    • #16797
      Cooper P Abrams III
      Participant

      My primary care physician put me on D3 2000 iu and this week after seeing my last blood test. Pulomonist have not mentioned it. I have an appointment on March 5th with them for a breathing test and VT scan. Rarely bothered with CO2 problem. I am 17 months into diagnosis. The post on dying was helpful. How do you post a picture. Can’t get out to work. [email protected]

      • #16810

        Hi Cooper,

        Nice to hear from you and thanks for contributing to this topic thread. I’m really finding it interesting how many patients with IPF are also on a prescription dose of vitamin D from a different doctor (Rheumatologist, GP, etc) but that their pulmonologist didn’t mention anything about the correlation. I think my lung specialist will be interested to read the recent study released on the mouse model, typically he is very interested in research pertaining to IPF. Whether or not he will consider it in his future practice, who knows but worth a try. Curious to hear what other doctors say as well!

        As for adding a picture, I can help with that 🙂

        At the top right-hand side of the screen you should see an option that says “profile”. If you click on it, it’ll take you to your profile for the PF News forum page. Then click on the circle in the middle of your profile “banner” and it should allow you to choose an option to upload your picture. Does this help at all? If that doesn’t work let me know and I can provide further clarification for you!

        Talk to you soon,
        Charlene.

    • #16823
      Cooper P Abrams III
      Participant

      Hey,

      You are a pretty good teacher!   I got it done this time, both background and picture.

      Thanks.

    • #16835

      Awesome, so glad you got it sorted out Cooper! 🙂
      Enjoy your day!
      Charlene.

    • #16849
      Barbara Schwenzer
      Participant

      Thanks, Charlene.  I will absolutely report back with what my pulmonologist says.

      Dr. Oz had a segment on hair loss, which has been a real problem for me for years now.  I figured it was from the various meds I take.  PCP said my thyroid.  Interesting to now hear it’s also a side of insufficient Vitamin D.  Be nice to learn it cures IPF.  We could all wake up healthy with a full head of hair!!! 👍🏻🤗

      Remaining optimistic,

      Barbara

      • #16896

        Hi Barbara,

        Thanks for writing back and sharing your thoughts with us regarding this topic thread. Yes, I find it interesting to learn about hair loss as a potential side effect of this insufficiency as well, as I also lose a lot of hair, especially in the shower! I always just assumed it was the various medications I take as well. I will remain optimistic with you re: the healthy and full head of hair! 🙂

        Do you find your hair has thinned Barbara, or does some spots have clumps come out? Thanks again for bringing up this topic.

        Cheers,
        Charlene.

    • #17035
      Rose M.
      Participant

      My previous primary doc never tested my Vit D level.  Neither did my pulmonologist.  I have a new primary as my previous one retired.  He tested my Vit D level last August, and it was low.  He waited a couple of months and retested it, and it was still low.  Put me on Vit D 5000 units each week.   I see him in a couple of weeks for repeat blood work and a visit.  Will bring him a copy of the article.

      I do not have any follow up with my pulmonary doc, long story.  Saw him last summer and everything was okay, so he said to follow up if needed.  Sometimes I think he forgets I have IPF.  However, my fibrosis has been stable for almost 6 years.  I’m not on meds or oxygen.   I will be checking in with the docs at UCLA’s ILD clinic in a month or so.

      • #17061

        Hi Rose,

        Thanks so much for contributing your experience to this topic thread. A really interesting one, isn’t it? Did you ask your new doctor to check your Vit D levels, or was this something he did on his own? Seems that many physicians, either lung specialists or even GPs don’t check this consistently. I was really hoping to have a conversation about this with my specialist last week but unfortunately I had to cancel due to poor weather conditions. Do you mind reporting back on his thoughts about the article? I’m so curious to hear what doctors are saying about any correlation between IPF/ILDs and low vitamin D levels…

        That is wonderful news about your fibrosis being stable for 6 years! I hope it continues like that for a long time for you Rose. Do you regularly go to the ILD clinic at UCLA, or is this because the pulmonary doctor doesn’t see you regularly? Sorry for all the questions!

        Take care,
        Charlene.

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