• Posted by Charlene Marshall on March 3, 2018 at 2:32 pm

    Hello Forum Members,

    I had a follow up appointment with one of my specialists this week and overall I am happy with how it went. Some of my numbers are a bit low/high from what they should be, indicating small problem areas that I need to keep an eye on but for the most part, it went pretty well.

    One of the things that my specialist was very concerned about was my lack of vitamin D. After a quick discussion, the specialist shared with me that normal levels of vitamin D should be 75-250 nmol/L and mine are <30. I was so surprised to hear this and asked about whether or not vitamin D insufficiency is problematic, of which I learned that it was. Not having enough vitamin D can lead to things like: bone and pack pain, MS, muscle pain, fatigue, frequent infections/illness, etc. All things I do not want to be dealing with on top of my IPF! The specialist gave me a prescription vitamin D (50,000 units in one tablet) for 3 months to help bring my levels back up again. I took the first one last night and so far no troubles, and I don’t anticipate having any side effects since it is just a vitamin. Has anyone else living with PF/IPF ever discovered that they are low with vitamin D or don’t have enough of other vitamins? I take a vitamin C supplement every day but never would have imagined that my vitamin D was so low that my specialist was concerned with it…..

    Looking forward to hearing from you.

    Charlene

    Charlene Marshall replied 5 years, 11 months ago 7 Members · 30 Replies
  • 30 Replies
  • gil

    Member
    March 8, 2018 at 4:40 pm

    Charlene,

    I love the sun and I get plenty of sunlight so I was surprised I too had low vitamin D. The doctor gave me a prescription similar to yours. Do you suspect low vitamin D has something to do with IPF?

     

    • Charlene Marshall

      Member
      March 9, 2018 at 2:53 am

      Hi Gil,

      Thanks for your reply! I also love the sun and spend as much time outside, even in the winter months as I can tolerate the cold. My family has always called me a ‘water baby’ since I love being outside and at the beach, so everyone was pretty shocked when my vitamin D was ‘critically’ low. Were you low on any other vitamins? All my other vitamins in my autoimmune workup were ok, and I do take a vitamin C tablet 2x per day to try and help keep all viruses/germs away. The only other things that were of concern were my cRP (indicator of inflammation, which makes sense to me) and my hemoglobin and iron stores continue to be low.

      To answer your question about vitamin D being associated with IPF, I’m not sure actually. I just found it interesting that I never had issues with low vitamin D before (that I knew of anyways, or maybe they just weren’t looking for it?) my diagnosis of IPF. Interesting that we both have this issue though! Did you have any side effects from the vitamin D prescription medication? I haven’t, although I’ve read that many people have…. let me know.

      Cheers,
      Charlene

    • rebecca-schrantz-lilly

      Member
      March 13, 2018 at 10:01 pm

      My husband who has IPF is on 5000 IU a day and I truly believe that with all the data out there on Vit D, I think it is one of the most important vitamins to take.  If you do some research on Vit D, you will find that it is beneficiary for your gut and we all know that what is going on in our gut has a lot to say what is going on with  our health.  We live in Phoenix and I am out every day and I thought that my Vit D level would be off the charts.  Sad to say when I had my blood tested it was 25.  They are now saying that a person should be at least 50.  We are told to put sunscreen on to prevent skin cancer but that also stops the absorption of Vitamin D.  We are now taking a Vit D supplement and both of our levels are above 60.  Please remember that they say a level of 100plus of Vit D may be problem such as toxicity but it is quite rare.  Do your own research because unfortunately western medicine still is in the dark on vitamins.

      • Charlene Marshall

        Member
        March 14, 2018 at 1:12 am

        Hi Rebecca,

        Thank you so much for joining the forums and contributing to this thread. I’m sorry to hear of your husband’s diagnosis of IPF… please know we’re all here to help in any way that we can.

        The number of people, patients and caregivers alike, sharing about the vitamin D deficiency has me fascinated. Was your husband advised to go on it following a blood test, or was it a supplement you both chose to go on? Mine was similar to yours when I had it read last week and I was prescribed a 50,000 IU tablet that I am now taking once per week for 12 weeks, then I can purchase an over-the-counter supplement to start taking. I am going to read up a bit more on the importance of vitamin D; I think I mistakenly just assumed that it was an optional vitamin and that being deficient in it wouldn’t be problematic. Truthfully, because I love the sun so much, I never suspected that this would be a vitamin D I was low on. I want to read more about how it impacts your gut, so I’ll do a bit of reading tonight. I was told that vitamin D levels should be 75-150, but I think I’ll look at some credible literature to see if the numbers reflect that.

        Thanks again for sharing and joining in on this conversation. Best wishes to you and your husband 🙂

        Charlene

  • aishia-moaishia

    Member
    March 8, 2018 at 10:43 pm

    I have always been low Vitamin D but I live in an area that is grey and gloomy about 9 months out of the year. Vitamin D deficiency in very common here. I take Vitamin D supplements daily. I am big on vitamins and supplements and take several daily.

    • Charlene Marshall

      Member
      March 9, 2018 at 2:58 am

      Hi Aishia,

      I know I still owe you a private message back, I haven’t forgotten – promise!

      Thanks for contributing to this thread as well, I find it so interesting that (so far) yourself, Gil and I all have issues with low vitamin D. I suppose it is one thing if there isn’t a lot of sunlight, likely people in the UK would experience this as well I would suspect. I never thought this would be an issue for me, especially given how much I love the sun and spend time outdoors… even if it is just playing fetch with my pup! I’m glad to know that you take a vitamin D supplement, did you notice any specific side effects from being low in vitamin D? I asked my Doctor about this, as I didn’t expect the side effects would be problematic, if any, from being low on “just a vitamin”. Apparently there are lots of side effects you can experience from being low on vitamin D. I asked about taking a supplement and she said no to me, that it still wouldn’t be enough. So, I am on this medication for 12 weeks (1 tablet/week) then she said if it is raised enough, I can start a high-dose supplement. If I may ask, how much vitamin D do you take as a supplement?

      I hope to have my message back to you by tomorrow! Chat soon 🙂

      Charlene

  • aishia-moaishia

    Member
    March 9, 2018 at 5:54 pm

    I don’t know that I experienced any particular side effect. However, when we live with something it just becomes normal for us. I love the out doors and sunshine as well. I take Vitamin D3 5000 IU once per day. I don’t know if it effects how I feel per se but I do continue to take it because I am consistently deficient. I also take a multi vitamin, Vitamin B Complex, Magnesium, Tumeric, NAC, DIM. I am going to add in Calcium as well.  I also take a probiotic.

  • Charlene Marshall

    Member
    March 11, 2018 at 3:04 am

    Hi Aishia,

    Thanks for sharing your experience with being vitamin D insufficient. I think the Vitamin D3 5000 IU will be what I will take after these 12 weeks are up of the prescription vitamin D. Right now, the one I take once per week is 50,000 IU. Freaks me out a bit to be taking that much, as I read there are risks of having too high vitamin D in your body (and those risks are scary!) but I trust my Doctor with knowing how it would impact me.

    You’re certainly right, about just adapting to something that we are living with and it becoming normal for us, isn’t it funny how we just adjust? I tried to just ‘adjust’ to being short of breath for awhile, since most people thought nothing was wrong with me, but then it was just one specific activity that I remember saying in my head “I know this isn’t right”, and at that point I started to advocate that I can’t just “adjust” to this symptom anymore.

    If you wouldn’t mind sharing, what is NAC, DIM stand for? I should really start taking a multi-vitamin as well, as the only ones I take right now are vitamin C to help keep me healthy and this vitamin D. I think I’ll start looking into some multi-vitamins next week!

    Charlene

  • terry-mcloughlin

    Member
    March 12, 2018 at 6:12 pm

    I wonder if the vitamin D deficiency is a symptom or a contributor to IPF. I also have been diagnosed several times with a deficiency. I started a D3 5000 IU once per day. I am out on the water all summer and vacation in the sun during the winter but it doesnt seem to be enough. I wonder if increasing our exposure to the sun will reduce the symptoms or the disease progression

    • Charlene Marshall

      Member
      March 12, 2018 at 6:59 pm

      Hi Terry,

      Thanks so much for sharing, this is such interesting information. More and more people are responding to this post with the same experience that we’re having. I have no idea whether or not vitamin D deficiency is actually a symptom or contributor to IPF, but this is something I’m going to note to ask my specialists about. Have you always taken the D3 5000 IU supplement, or did you do this at the recommendation of your Doctor? I also am a “sun-worshipper” so I was really shocked to learn that my levels were low, especially as low as they were. My Doctor even said a vacation in the warm weather / sun wouldn’t be sufficient enough to raise my levels as high as they need to be. Have you noticed any differences in how you’re feeling since you started taking the supplement? I had no idea all the symptoms vitamin D deficiencies could cause until my Doctor described them so I hope with my prescription, I will start getting some relief from those. I just don’t know which is the symptoms of the deficiency vs. the IPF, as so many of them (fatigue, bone pain, etc) overlap…. curious to hear your thoughts!

      Thanks,
      Charlene

  • terry-mcloughlin

    Member
    March 12, 2018 at 7:28 pm

    I find it interesting that such a high percentage of forum members share the same vitamins D insufficiency. I just started taking the suppliment several months ago and haven’t noticed any changes in how I feel. I may double my dosage to 10,000 IU, which is still within safe limits, at least until the summer begins.

    When I returned from a trip to Mexico a few months ago, I told my GP how good I felt and how my IPF symptoms were significantly reduced. He responded by saying “so what are you doing here in Ontario. Go back to Mexico”. I had a chuckle and said I would, very soon. Apparently, if a medical condition can be treated by being in an improved climate, the expense or at least part of it, is a tax deduction. I spoke to my accountant about this and she is looking into it.

    Perhaps it’s just another positive attribute to having IPF.

    • Charlene Marshall

      Member
      March 14, 2018 at 12:51 am

      Hi Terry,

      Thanks for sharing and I completely agree with you – it is fascinating to me how many people have shared that they also have a vitamin D deficiency, and most it seems, have had it for awhile. I’m thankful for everyone sharing their experience with this because I’ve made note of asking my doctor about this and whether or not it could be related to IPF. I never thought to ask that before because I guess I just didn’t connect how a lung disease could cause a deficiency in vitamin D (or potentially contribute to it).

      Yes, I was reading about the IU amounts of vitamin D levels as the prescription I got was 50,000 IUs and I didn’t think that could possibly be safe! Apparently it is. This is the name of the prescription drug I am on: ergocalciferol, which apparently is a vitamin D2. I’m glad to hear you haven’t had any negative side effects, I can’t imagine a vitamin would cause side effects, however, like I said I was shocked to hear how many symptoms you can feel for being vitamin D deficient. I’m monitoring closely to see if I notice a difference in how I feel, as I’ve taken two tablets now since my prescription is to take one tablet just once per week. So far not much difference I don’t think. If anything I feel more tired, but I think that is due to the nerve pain medication I am on and the change in daylight savings!

      Wow, thanks for sharing the piece about the tax reduction! Like Gil, I want to look into this as well. I jokingly asked my doctor if she could just send me on a free vacation in the sun and she laughed, but I’ve heard many people say that they feel better physically (in terms of being able to breathe) near the ocean/coast. I also have no idea why I live in Ontario. Would you mind letting us know what your accountant comes back with?

      Cheers,
      Charlene

  • gil

    Member
    March 13, 2018 at 2:49 am

    Terry,

    Apparently, if a medical condition can be treated by being in an improved climate, the expense or at least part of it, is a tax deduction

    This is something I will look into, thank you for the idea.

    What do you think it was about the trip/location that helped you?   Doctor suggested I move to the desert during winter and the coast during summer.

     

     

    • Charlene Marshall

      Member
      March 14, 2018 at 12:52 am

      Hey Gil,

       

      It’s great to hear from you! I often wonder how you’re doing 🙂
      Have you made any decisions on your move yet? Leaning one way or the other? I know it may be a bit premature for you to decide yet, I just was curious.

      Hope you’re doing well.
      Charlene

  • eileen-lewis

    Member
    March 13, 2018 at 2:57 pm

    I too have a vitamin D deficiency. Also recently spent 2 months on the Gulf Coast. I felt great the whole time I was there. I think it had to do with less fluctuation in temperatures.

    If someone is checking into tax deduction please post. Not very hopeful due to the new tax laws.

    • Charlene Marshall

      Member
      March 14, 2018 at 12:55 am

      Hi Eileen,

      Thanks for joining us in the PF forums! How are you? I know we have corresponded before via the comments section of some of my columns and you recently had a wonderful trip to the UK if I recall? I am looking at going in September, and would love to chat with you about it sometime!

      Isn’t it interesting how many people have posted here about being vitamin D deficient? I am kind of shocked, as I didn’t expect so many people to share this commonality with me when I was told mine was ‘critically low’ a couple of weeks ago. There is definitely comfort to be found in these forums, and a significant reduction in feeling isolated, that is for sure.

      I hope you are doing well 🙂

      Charlene

  • terry-mcloughlin

    Member
    March 13, 2018 at 3:27 pm

    I found a case where a person claimed expenses for a trip to a warm climate to improve their health condition. In 2008 their claim was accepted. In 2009 their claim was partially rejected however they appealed and won.  This is a link to the appeal;
    <p style=”margin: 0px; font-size: 12px; line-height: normal; font-family: Helvetica;”><span style=”font-size: 12pt;”>https://taxinterpretations.com/content/354519</span></p&gt;
    Gil, I’ve been trying to understand what part of climate makes me feel better. Is it the temperature, humidity or barometric pressure, or possibly sun intensity and vitamin D?

    My experience seems to indicate that high temperature, medium to high humidity and high barometric pressure helps the most. Ten weeks ago, I was in Mexico and could climb 2 sets of stairs and walk the beach without oxygen. Last spring I was in Ibiza and could climb cliffs to see the old forts with just occasional breaks and I also went to Cannes where I could walk up very high hills all without bringing oxygen. In these 3 examples, the temperatures were 25 to 30, the humidity was 75% or higher and barometric pressure was at sea level with a clear sky. Today, I am indoors with oxygen at 3.5 without exertion.

    I feel that the most important factor is the barometric pressure or the salt air being at the coast.

     

    • Charlene Marshall

      Member
      March 14, 2018 at 1:02 am

      Oops sorry Terry… In a previous reply I asked you to share what your accountant finds, but I saw above that you shared two cases of people in 2008 and 2009 being able to claim some travel/trip expenses. If your account does share anything interesting, do you mind connecting back with us?

      How do you find Ontario summers for humidity? The first summer I was living with IPF (2016) there were only a couple of days that I struggled, mostly when the humidity was high and the temperature was 30+ but last year I struggled a lot more and I don’t think it was an overly hot/humid summer. Perhaps this is mainly disease progression, not sure? I sometimes sat on the beach with my oxygen on, and at night-time when the humidity lifted a bit I seem to do a bit better. I haven’t actually monitored how I do when it comes to barometric pressure but I am going to see if I can note this better in future. The last few days with the fluctuation in temperatures (even from +5/6 to – 2/3 at night) I am struggling with really bad headaches and shortness of breath so I have been on my oxygen. Curious to hear how the summers are for you when you have a moment.

      When you were on vacation, did you swim? And if so, was the exertion problematic for you? I love to swim and I fear most that this will soon no longer be an option for me…

      Looking forward to hearing from you.
      Charlene

  • terry-mcloughlin

    Member
    March 13, 2018 at 3:35 pm

    I just tried the link I posted earlier and it didn’t work however if you google
    tallon v. the queen 2015 fca 156
    You will find the information about the claims and appeal.

  • terry-mcloughlin

    Member
    March 13, 2018 at 3:38 pm

    sorry for getting you hopes up but there is more information on the tax deduction.

    In 2015, the tax department ruled that the deduction should not be allowed. Perhaps there is more to come.

  • gil

    Member
    March 13, 2018 at 4:04 pm

    Terry,

    “temperatures were 25 to 30, the humidity was 75% or higher and barometric pressure was at sea level with a clear sky

    Thank you for the information.  The place I am considering has an average temperature of 27, 66% and it is at sea level. Sometimes there is fog, e.g., May, but most of the time it is nice.  So, you have given me another reason to move.

    Going further south eliminates the fog issue but I don’t want to live that far south, the Los Angeles/San Diego traffic is simply too much for me.  I am considering somewhere between Santa Maria and Ventura, California.

    As for the tax deduction, I live in California  and the laws are different and I will look into it, it makes sense that this is a medical expense.

     

     

     

    • Charlene Marshall

      Member
      March 14, 2018 at 1:04 am

      Hey Gil,

      Let us know what you find out re: California laws and tax dedication for chronic illness expenses. I’m simply just curious now 🙂

      Cheers,
      Charlene

  • terry-mcloughlin

    Member
    March 14, 2018 at 1:45 am

    I’m surprised about how much information is available linking vitamin d deficiency and lung disease.

    https://www.nature.com/articles/s41598-017-03474-6

  • Charlene Marshall

    Member
    March 14, 2018 at 1:51 am

    Hi Terry,

    Thank you for sharing – this is so interesting! I am going to print the whole study at work tomorrow and have a read through it. I’d also like to bring this to my doctor and obtain his thoughts on it. I’ll connect back tomorrow once I’ve read the whole thing about anything that resonated or I could relate to personally. Thank you for sharing!

    Charlene

  • rebecca-schrantz-lilly

    Member
    March 14, 2018 at 1:58 am

    Charlene,

    My husband’s Pulmonologist never mentioned anything about checking out his Vit D level.  As soon as my husband was diagnosed, I started researching about the disease and what we could do naturally.  Amazing what this little, cheap supplement can do.  I automatically just started the 5000 IU’s and then went out into the sun without sunscreen for about 20 minutes and then if staying out longer put sunscreen on.  I made my husband get the 25-Hydroxy blood test and after about 60 days, he finally was at a level that was optimal.  Also Charlene, you mentioned your CRP reading was an issue.  After research, we went on Turmeric at 1000mg a day.  My husband’s last lung X-rays made his Pulmonologist very happy.  He has been on Turmeric since he was diagnosed and he feels so much better.  Now is it just Esbriet, maybe but I believe it is all the supplements with the Esbriet that is making my husband feel so much better than 4 years ago.  I hope this information helps.

    Rebecca

    • Charlene Marshall

      Member
      March 15, 2018 at 10:53 pm

      Hi Rebecca,

      Thanks so much for sharing about how you came to be taking different vitamins and how they seem to help you and your husband. I hope he is doing well!

      Regarding the vitamin D, my respirologist (what we call pulmonologists in Canada) didn’t make note or mention anything about the deficiency either. It actually appeared as a result of the rhuematologist running a large bloodwork panel for potential autoimmune diseases. I am going to bring the deficiency up to my lung specialist when I see him next, and just find it super interesting that so many people living with IPF also have a deficiency. I am looking forward to the summer/warmer months arriving here in Canada so I can spend some time soaking up the sun, carefully of course. I suspect after 12 weeks on the prescribed vitamin D tablet, I will just be able to take the regular over-the-counter supplement. I’ll have to check though.

      Yes, my cRP was also quite high indicating inflammation. I’ll definitely look into turmeric more, I often drink this kind of tea and enjoy it but I think I’ll look into a supplement as well. The information is very helpful, thank you! I am very interested in natural remedies to help with my IPF, even if it doesn’t change the course of the disease; relief from certain symptoms using natural treatments would be very welcomed. Have you ever considered (or might you in future) herbs or chinese medicine to help with IPF? A study just came out regarding this not too long ago. I think I shared it in previous threads, so I can’t help but wonder about this as well…. curious to hear your thoughts.

      Chat soon,
      Charlene

  • terry-mcloughlin

    Member
    March 14, 2018 at 2:04 am

    Charlene, humidity doesn’t seem to bother me as much since I moved from the city to Innisfil a few years ago. It may actually be the higher air quality based on reduced pollution. I would also like to hear from someone who lives is a climate with a consistently higher level of humidity.

    Spending time on the lake and boating often gives me plenty of opportunity to swim but my distance is significantly reduced. I jumped off the front of the boat last year and barely  made it to the back to climb the ladder. I’ll never try that again. Be careful.

     

    • Charlene Marshall

      Member
      March 15, 2018 at 11:00 pm

      Hi Terry,

      Thanks so much for your reply – it is nice to connect with someone who lives in somewhat close proximity. I used to live in the GTA as well, and moved further away from it as I found the smog and pollution pretty bad. Although, I moved when I knew something was wrong with my lungs and was being investigated, we just didn’t know for certain yet what it was. I’m hoping someone here can answer your question about persistent humidity. I absolutely love summer, but since my diagnosis, I don’t think I could handle the heat longer than the months that are our summers. I hope this year isn’t too bad!

      That is so good to know about swimming, although I am sad you had to find that out in such a scary way. I think I’ll do a lot of ‘wading’ this summer where I can touch the bottom of the pool or lake. A few weeks ago I was away on a trip and wanted so badly to swim in the ocean, but the people I was with aren’t strong swimmers and I was so afraid of being pulled or knocked over by a wave or rip of the sea and not being able to get out of it. This was hard for me to accept as I used to swim varsity in University, that is how much of a strong swimmer I was. Just another change associated with this disease I suppose…

      I hope you’re doing well, and thanks so much for sharing.

      Cheers,
      Charlene

  • jay-turbes-s

    Member
    March 15, 2018 at 8:05 pm

    With the caveats about avoiding sun exposure that come with Esbriet and living in Denver where sun is frequent and strong, we (I’m a caregiver for Milady who has IPF) loaded up on sunblock clothing (which she rarely uses…) and are on a calcium supplement containing 1,000 IU’s of D (most calcium supplements have D to aid assimilation). I would guess that Ofev has similar caveats.

    Cheers!

    J.

    • Charlene Marshall

      Member
      March 15, 2018 at 11:04 pm

      Hi Jay,

      Thanks so much for sharing your thoughts on this as well! I love that you wrote a caregiver to ‘milady’…. so awesome 🙂

      Hmm… I wonder if considering a calcium supplement with D in it would be a good option for me in future, once I can take the over-the-counter supplements vs the prescription ones. If it has the IUs in it that a regular vitamin D tablet would, it would be beneficial for me to get the calcium too I would imagine. I’ll consider this, thank you for sharing.

      I hope you and your wife are both doing well.

      Cheers,
      Charlene

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