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    • #23993

      One of the most spectacular things about this forum is the ability to connect directly with other patients also living with idiopathic pulmonary fibrosis (IPF). Now four years into my diagnosis, there is no other platform out there quite like this one. Everyone is so willing to share their experiences, or recent articles they’ve found on research or how to better live with this cruel lung disease. Some of you have even shared discussions you’ve had with your physicians about the relationship between some medications or supplements and IPF. A prime example of this was our discussion on vitamin D deficiency and IPF… this was very helpful to me when I was also diagnosed with being vitamin D deficient.

       

      In addition to not having enough vitamin D, my bloodwork regularly reveals I am low on iron and for several years I’ve been taking an iron supplement that you have to get from a pharmacy (due to the amount). Reading the recent post on Pulmonary Fibrosis News on iron build up in the lungs driving fibrosis development now has me feeling a bit concerned. I think I will add the discussion topic of whether or not taking an iron supplement while having a fibrotic lung disease like IPF is a good idea. The paragraph from the article that particularly concerns me is: “previous research has shown that people with fibrosis-associated lung diseases, such as idiopathic pulmonary fibrosis (IPF), often have abnormally high levels of iron in their body”. However, my regular bloodwork always reveals the opposite.

       

      Have any of you ever been put on an iron supplement? 

      If so, did your physicians ever mention anything about the relationship between excess iron and IPF? 

    • #24011
      Jofac O’Handlin
      Participant

      Hi Charline,
      Two items:

      The first item refers to my comment about ensuring a good iron diet to maintain healthy haemoglobin.  Then I read today‘s PFN article on high iron in the lung tissue of IPF patients. Hey! Let us reduce iron! But then in the same article that reducing iron in the healthy increases the risk of fibrosis. So no, not an answer! What a balancing act. I continue with a homeopathic   level supplement.

      Is there any mileage in the control of iron in our systems? Research required.

      Sorry, couldn’t find my way back to the heart risks for IPF sufferers, so:

      Second is a response to the IPF increase in heart disease risk. I did a check with my PF nurse and cleared my thoughts. As I had kept active, running usually twice per week until last summer, and with a large endurance heart, I erroneously believed that I would be protected from that risk. However, I had not factored into my thinking that as the capacity and gas transfer ability of the lung declines the pulmonary loop has to work harder. Hence higher blood pressure in that loop, not the rest of the body.

      The right ventricle of the heart must then must work harder with all  the attendant risks. My exterior blood pressures are very good for my age, better than 120 over 75. That, it seems, will not protect me! I am not medically knowledgeable,  but can now appreciate this problem from a pure engineering point of view. So, I will not have any better protection from heart failure than the next guy, and hence, probably my arrythmia.

      You are so young to have this affliction and my heart goes out to you. I am at least in the usual cohort, diagnosed in 2013 at 71, almost 7 years ago. We pray for a cure.

      Kind Regards, Joe

      • This reply was modified 1 year, 7 months ago by Charlene Marshall. Reason: formatting to remove code
    • #24012
      Regina Bolyard
      Participant

      The article referenced in this thread reminds me of another I recently read. But the latter was pertaining to SARS-CoV-2.

      It theorized that the novel coronavirus is causing damage to the iron transport system. It speculated that unliganded iron (which is toxic) when dumped from Ferritin is instigating inflammation and cell damage in organs. A friend shared the article on Facebook and it has since been flagged as questionable. But I wonder if there is something to it. I suppose time may tell.

      The takeaway for me is that much remains to be understood. The body is a tightly balanced chemical system. Finding the root cause for dysfunction in this system can be very difficult. It would be fabulous if supplements easily patched up “holes”, but they can sometimes confound instead. I’m concerned about possible negative consequences of taking any supplements lately.

       

      The more I learn, the dumber I feel.

    • #24146

      Hi Regina,

      Thanks so much for writing and contributing your thoughts on this topic! I also really like how you concluded the post, “the more I learn, the dumber I feel”. Not that I am glad you feel this way, but I am glad I’m not alone in feeling this way! There is so much out there and deciphering through it in terms of what is credible and what isn’t, is so important. I think I’ve read the same article on the iron transport system and am waiting for a credible source to shed light on it. I’ll let you know if I come across anything pertaining to Iron/Fibrosis/COVID. The body sure is a complex system, I agree!
      Stay safe.
      Charlene.

    • #24147
      Regina Bolyard
      Participant

      Hi Charlene,

       

      Thanks for responding to my post. Having PF has been a very isolating experience, even before I knew what was wrong. I feel like people just can’t handle hearing about my issues, so I withdraw. It’s important to have an outlet like this forum in which to express my thoughts.

       

      Since November I have scoured the PFF YouTube channel and the internet for information that might be relevant to my diagnosis. Because of the lung issues related to Covid-19 there is suddenly a lot of information being disseminated  that seems credible but is not peer reviewed. It is particularly enticing to delve in because I have a lot of free time with “stay in place” measures. But I think a “wait and see” attitude is prudent. And taking as deep a breath as possible to calm down.

       

    • #24148

      Hi Joe,

      So nice to hear from you, thanks for writing! Sorry for the delay in  getting back to you — what a tough few weeks. How are you doing amid the pandemic and isolation?

       

      I agree with you that managing this disease sure can be a balancing act sometimes! How are you finding the homeopathic supplement you’re taking? I do hope more research is conducted on the use of iron and fibrotic development. I think it is so helpful for us to know, especially females who often rely on more iron, typically speaking.

      Interesting feedback about the heart as well, I know that our RV is often overworked when we have a lung condition like IPF. Did your PF nurse shed any light on whether or not we’re more likely to have heart conditions in association with lung disease? I’m sure this is indeed the case, unfortunately.

       

      Thank you for your kind words! I also pray daily for a cure, and hope I am around when that happens… it will be quite the celebration!
      Charlene.

    • #24149

      No problem Regina, I’m glad to hear you’re finding some comfort in this forum as an outlet. I am so grateful for all the patients and caregivers here that share their experiences so willingly. You’re right — IPF can be so isolating in the “real world”. Sorry to hear others struggle to hear about your experience, so unfair and I hope they never have to contend with a chronic illness that they need to share with others! We’re always here for you 🙂

      I also am so hopeful that the research, treatment and/or better understanding of ILDs as a result of COVID illuminates something that is helpful for us! Taking in the information with caution, ensuring it is credible and peer reviewed is important, I agree. A wait and see approach is good, I just hope the waiting is too long. Fingers crossed.

      Take good care and enjoy your weekend!
      Charlene.

    • #24168
      Piet Potgieter
      Participant

      Immediately had a blood test done, but no excess iron in my blood. I was diagnosed with IPF in 2017.

      Regards,

      Piet.

    • #24234

      Really glad to hear that news Piet, thanks for sharing! I am going to look into this the next time I have bloodwork as well. Take good care, Charlene.

    • #24253
      Shaw Jennings
      Participant

      All,

      I was diagnosed with Hemocrhromatosis in 2015. I immediately started treatments (phlebotomies) to remove stored iron in my body and lower ferritins in my blood. Since my diagnosis, every six months my blood is checked for raised ferritin levels and, when elevated enough, I have another phlebotomy.

      I was also diagosed with IPF in 2017. Since my diagnosis neither my Pulmonologist nor my Hematologist have mentioned any correlations between the two health conditions and excess iron. To confirm, both doctors are well aware of all of my health issues.

      When I see my Pulmonologist and Hematologist in the next couple of months, I will share this discussion and ask if either of my doctors are aware of increased iron being a problem for IPF patients. I trust and respect both of my doctors, but at this time I am thinking neither of them is aware or possibly they are not concerned.

      After considering Charlene’s reference to “iron build up in the lungs driving fibrosis development”, I wonder how many others diagnosed with IPF also have Hemochromatosis. I also wonder, for those of us with IPF, what is a safe level (not too much and not too little) of iron? For now, my Hematolgist is trying to keep my ferritins below 100.

      Shaw

    • #24302

      @shawmj

      Thanks so much for writing to us regarding this. I don’t have any experience with Hemochromatosis, though have been diagnosed with IPF since 2016. I’d be curious to hear from your physicians too re: the relationship between excess iron and IPF. If you share with them, make sure to share the credible news article which sources a few studies on this topic vs. a conversational thread, they may be more apt to hear about it if credible sources are shown, just a thought. Perhaps they aren’t concerned about the correlation or are unaware. I’d be curious to hear they’re thoughts. Please let us know if you can 🙂

      Take care,
      Charlene.

    • #28649
      Lucy
      Participant

      My husband has been diagnosed with hemochromatosis several years ago years and  in 2018 was diagnosed with IPF. I too would like to know if there is a correlation.

      • #28679

        Thanks for writing and sharing your thoughts Lucy! I hope someone is able to determine this correlation through conversation with their doctors. It seems logical that there is a relationship, but a good thing to discuss with our physicians and report back. Let us know if you find anything out from your husband’s doctor or if you have a chance to ask him/her.
        Thanks,
        Char.

    • #28670
      Chris Soper
      Participant

      Interesting…. 12+ years ago my late husband was encouraged to take LIV-52 supplement by a pharmacist in Cyprus to protect his liver (he liked a drink).  He started to suffer breathlessness but we didn’t connect the two. In 2016 he was diagnosed as ‘possible IPF’ but never definitively confirmed. His feratin level at one point was 800+  Unexpectedly he had a near fatal heart attack last year and heart stents.  Does seem likely – in his case certainly – that there is a connection between excessive iron levels, IPF and heart disease.

      • #28678

        Hi @chris

        Thanks for sharing a bit about your husband’s story. Like many things, it seems patients experiencing this disease and others have made a logical connection between excess iron and fibrotic lung diseases, but of course, hard to confirm without medical evidence. Were you ever able to ask the doctor about any connection to his diagnosis of IPF? I would be curious to hear from others who have chatted about whether there is any correlation. It was my GP who put me on supplemental iron and he didn’t know anything about a correlation to my lung disease but I must remember to ask my pulmonologist about this and see if she knows.

        Thanks for writing and sharing your thoughts!
        Charlene.

    • #28671
      Jofac O’Handlin
      Participant

      Hi Charlene, and other contributors,

      Gosh, is it over a year since this thread started, And what a year!

      Well to have survived, and kept sane has been a challenge.

      My wife has kept feeding me the homeopathic dose of iron liquid every other day. This in my mind to maintain healthy haemoglobin,  whether this is true or not.

      I have retired from several social house groups, and maintaining social distancing as self protection.

      Since reading the comments about feratin levels, and since my 3 monthly blood test for liver function is due, I shall request a check on my iron levels to be included, and report back.

      Just to note: I suffered an exacerbation at the end of January which made me dependant on O2. I have since made a minor recovery in so far as my sedentary sats levels have recovered to the 92 – 95%, without O2. However, my walking speed and distances  have reduced, needing portable oxygen …. unless I pace myself carefully.

      Best wishes to you all, Joe

      • #28677

        Hi Joe,

        So nice to hear from you – thanks so much for the update on how you’re doing! It has been a surreal year, or 14 months I suppose, with the pandemic and everything going on in this world. I’m glad your wife continues to take such great care of you.

        Please let us know how the iron levels are, I am always curious to better understand this relationship. I remain on a high iron supplement as well, as recommended by my doctor.

        Continue to pace yourself as you recover from your exacerbation – thinking of you and thanks for writing!
        Char.

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