Link Between Iron Levels and PH

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    • #18018
      Colleen Steele
      Keymaster

      This interesting article was posted on the PH News homepage. Has anyone had challenges with their iron levels and has it been discussed with your doctor about if effecting or maybe contributing to your PH? Do you take Iron supplements and if so, how long have you been on them?

      I don’t recall my son taking iron supplements when he had PH but his regimen changed frequently so maybe he did and I don’t remember. He has had problems with anemia since post transplant and was recently taking iron but only for a few months. His pulmonary nurse said that normally iron supplements usually are given for 2-3 months, and then are stopped. If his labs show he is becoming anemic again they will re-assess.

      When reading this article though it sounds like the iron deficiency that might be a link to PH is more than just anemia.

      Mouse Study Finds Causal Link Between Iron Levels and Pulmonary Hypertension

    • #18060
      Jen Cueva
      Keymaster

      Thanks, Colleen! This is a very interesting and informative article. I do have low iron ( iron deficiency anemia). I have to get iron infusions as my body wasn’t absorbing the real iron pills.

      I have a Hematologist on my care team and have for several years. I just completed my last series of iron infusions on New Year’s Eve. My appointment last week, he said that my iron levels continue to drop and I’ll need another series between now and September. We will base it on my labs and if I’m craving ice (which I do when it’s extremely low).

      My PH doctors have never contributed it to PH or vise verse, I have anemia in my family history, so they say it is the cause that but my Hematologist thinks that my PH meds are contributing to my anemia.

      • #18061
        Colleen Steele
        Keymaster

        Jen, now that you mention it I vaguely remember my son having an iron infusion before but I can’t recall if it was pre or post transplant. I would say anemia is probably hereditary for him as well since I have always struggled with it. I struggles bad with anemia when pregnant with him…good grief…could that be a connection? Who knows!

        How did you do with the iron infusions. Did they make you nauseous at all the way iron supplements can?

        I wouldn’t be surprised if certain PH medications contribute to anemia because the iron deficiency my son has now is contributed to his transplant medications.

        • #18090
          Jen Cueva
          Keymaster

          LOL Colleen, no the iron infusions do not make you (or me) nauseated or constipated as I know the oral iron can do often.

          Who knows what came first? We may never know, just do what we have to do and move along, lol

    • #18079
      Brittany Foster
      Keymaster

      Hey all,
      Surprisingly even with such low amount of nutrition the last 6 months, my body has adjusted and a lot of my nutrient levels and my blood counts are surprisingly okay and in normal range. It’s so shocking to me how much the body tries to adapt and “level out” even when you don’t think you’re giving it enough especially when there is lack of the essential vitamins and nutrients. My PCP was actually very surprised that things looked okay. The red blood cell count is always slightly low for me, but not anything that would need treatment (thankfully) because I have had an iron infusion a few times in the hospital and it BURNED like crazy!

      • #18082
        Colleen Steele
        Keymaster

        Wow Brittany, that’s great! The body is truly an amazing machine!

      • #18089
        Jen Cueva
        Keymaster

        Wow, Brittany! that’s definitely is amazing news! Our bodies never seem to amaze me! They tend to be so durable!

        Ohh yes, those iron infusions can burn. Usually if they have the infusion rate too high. I had one nurse who did that to me at my last one in December. Ouuchhh…I let her know quickly, lol

        • #18094
          Brittany Foster
          Keymaster

          I’m like a durable battery at this point haha! And you’re right about when the infusion rate is up too high. It is definitely noticeable ! They have to run a lot of medications slowly for me or else they risk the veins blowing. Happened to me a few times and I had an infiltrated IV. Especially IV benadryl or it is quite the head rush if they put it through too quickly !

        • #18097
          Colleen Steele
          Keymaster

          Brittany, when my son needs an infusion of any kind we have to go slow because of his veins and also because he just always seems super sensitive to whatever they are administering. He occasionally needs IVIG infusions and he has to be admitted for those so they can slowly give it to him over 18 hours. If they go faster he gets so sick, especially with a migraine that can last for days.

          You’re like a durable battery…that’s funny!

        • #18100
          Brittany Foster
          Keymaster

          I get migraines really easily from infusions too. Something that always gave me an awful headache and migraine after is when I get a CT scan or MRI with contrast. For some reason I have an awful neurological reaction to the contrast. This is actually marked as an “allergy” for me so usually I get the IB benadryl before a scan so it helps (might just put me to sleep and that’s why I think it helps haha!)

        • #18101
          Jen Cueva
          Keymaster

          Too funny Brittany, I often say I’m like the ” energizer bunny” minus the energy lol

          Yes, my veins are small and now full of scar tissue, I imagine that your son has this issue too, Colleen. I know with all Brittany has been through, it’s really hard on your veins.

          Interesting about the contrast, I haven’t had issues with this but the last few years I’ve not been to have the contrast due to kidney issues. Oh Brittany, Benadryl knocks me out too, lol

        • #18124
          Brittany Foster
          Keymaster

          Jen,
          What do they do about the sensitivity to the CT contrast? Is there something different that they use when they need to do a study with the dye or do they just avoid that altogether for you?

        • #18135
          Jen Cueva
          Keymaster

          As far as the contrast, I just have had to have tests without contrast. Although these didn’t offer the best images, it was better than just not having the tests, per my doctors. I know last year, they waited until my kidneys were at a certain level ( little improvement) and then allowed me to have the test. My CKD ranges from stage 3-4, I’m trying to keep it more in the 3 range as I know, then that’s when I have the least issues.

    • #29911
      Aunt Lizzie
      Participant

      I am a bit late in getting into this discussion but just read the article 28 April 2021 on Iron Supplementation and impact or not on PH. Very interesting. In the last 8 years no doctor has mentioned the possible connection between PH and iron deficiency but I have had low ferritin 3 times and an iron infusion in 2016 and another due next week. Last one perked me up no end and hope this one does too. I know when it is low, I have no stamina. I don’t think it changes my 6MW or other functions though. Docs usually start looking for areas of possible blood loss with colonoscopy or endoscopy, or urine and feacal tests. Nothing ever shows up there. I had a very bad case of Shigella dysentery back in 1984, 2 years later my heart started playing up, but it wasn’t until 2012 that PH was diagnosed. Shigella knocks your innards about something awful. I have always suspected this as causing a number of gut and heart problems.

      • #29920
        Colleen Steele
        Keymaster

        @auntlizzie there is no such thing here as being late to a discussion. In fact, we encourage revisiting former topics so new members have a chance to benefit and contribute to them. Thank you for bringing this topic back to the top.

        I’m curious if since reading the article if you have plans to discuss iron deficiency with your doctor?

    • #29922
      Terry
      Participant

      Just read your post Aunt Lizzie and it was a wow moment.
      At one stage during my quest to find out why I could not breath I was sent for a bronchoscopy and my iron levels etc. were so low I was kept in hospital overnight and given an iron infusion ,blood transfusion and diagnosis I was losing blood somewhere.Subsequent Colonoscopy and Endoscopy showed nothing .

      I had an aunt lizzie. Sheep farmer. Dad sent me there on holidays sometimes. Each morning breakfast was eggs, lamb chops and glass of milk. The catch was we had to go outside in the freezing cold to milk the cow , collect the eggs and retrieve the chops from the Coolgardie safe hanging in the tree.
      A sheep was dressed once a week off the same tree.
      We reckoned she was so tough that that was where the saying tin lizzie came from.
      Its not you is it Aunt Lizzie ? Na can’t be.

    • #29924
      Aunt Lizzie
      Participant

      Well I started a reply to both you Colleen and Terry but the Cookie window came up and wiped me out (I think), so here goes again. Yes I am definitely going to speak to my various doctors about the possible connection between low iron and PH – a no-brainer now.
      Terry I loved your post. Took me back to a Station out of Broken Hill. Tough mutton, and a good fry-up for breakfast. Wonderful for the arteries, eh? Now was that your Aunt Lizzie or the sheep you thought of as Tin Lizzie? Also, we had a holiday shack down at Aldinga in SA. No services laid on so it was a quick dip at the beach to keep clean and a long-drop down a dusty path. Rabbit stew for dinner and of course a good fryup for breakfast. Oh yes, and no I am not your Aunt Lizzie although I may be old enough to be.

      • #29929
        Colleen Steele
        Keymaster

        @auntlizzie those darn cookie windows. I’m sorry you type your comment twice.

        It’s a small world how you and @terry are not far from each other. I’m enjoying the conversations between the both of you. Keep them going!

    • #29925
      Terry
      Participant

      Hey Liz. Hang in there mate and stick to your guns to get answers. Most docs. eyes glaze over when you say PH.
      I was going to say especially in SA as they still practice blood letting for headaches but I know its not true.
      Would you believe we came from just up the road from you in Mallee country.

    • #29932
      Carol Volckmann
      Participant

      Aunt Lizzie. I totally agree with Terry. Don’t let the doctors dismiss what is the obvious. PH and PAH does link with low iron levels. I have not had to have an infusion yet, but do take high levels of iron 3x per day.You might go on line with the Mayo Clinic or others and show your doctors the findings. By the way, just love the written journey you and Terry shared!
      Carol

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