Pulmonary Hypertension News Forums Forums Support Groups PH and Co-Existing Conditions Let’s Discuss Vitamin Deficiencies

  • Let’s Discuss Vitamin Deficiencies

    Posted by Colleen on October 6, 2022 at 7:06 pm

    Have you ever been diagnosed with a vitamin deficiency and if so, what type? How did it affect your PH? What, if any, symptoms did you experience? Were you placed on doctor approved supplements or treatments and how well did they help?

    I’ve been diagnosed with neuropathy and anemia likely caused by a significant B6 and B12 deficiency. It also points to my struggle with chronic fatigue. I’m a caregiver, I do not have PH, but if I did, I could only imagine how complicated these deficiencies would make the disease.

    *Reminder – It is important not to take supplements or any over the counter medication without first consulting your doctor.

    jen-cueva replied 4 months ago 5 Members · 11 Replies
  • 11 Replies
  • jen-cueva

    October 7, 2022 at 6:54 pm

    Hi @colleensteele, I have anemia and vitamin B12 deficiency. I give myself a B12 shot every month. That seems to help mine. For the anemia, I require iron infusions at times.

    I also have low sodium at times, which is odd because, with PH and CHF, I was always told to limit sodium. These both add to my PH symptoms. I experience more leg pains, fatigue, cramping, and much more.

    Hopefully, you can find some relief from your neuropathy. I’ll keep you in my prayers. Get that Vit B6 and start taking that one, too.

  • susi-steppins

    October 11, 2022 at 11:26 am

    @colleensteele and @jenc I am sorry to hear about the anemia and other ongoing problems.

    My husband was recently diagnosed as anemic and I am witnessing how exhausted he is all of the time and the brain fog that comes with it.

    I have been really struggling to keep my potassium levels in check.

    My doctor has me taking the highest amount that my insurance will cover and yet they are still always just slightly below the low number on the scale.

    I try to eat food that are high in potassium.

    Avacado, pomegranite, artichoke, bananas,  coconut water, orange juice.

    It is hard.

    I am so very tired of bananas.

    I also have to take magnesium to help with the cramping I experience.


    • Colleen

      October 11, 2022 at 12:29 pm

      Thank you @jenc and @s-steppins for sharing your experiences with Vitamin deficiency. I’ve dealt with anemia most of my life, especially during pregnancy. It was so bad when I was pregnant with my 2nd that I felt the need to tell Brian to save the child if it came down to a decision.

      Other than bruising easily I really haven’t paid attention to anemia until the neuropathy started, and even then I didn’t make the connection.

      My B12 is “low normal”. The doctor believes it probably doesn’t stay there and that it often goes below. The B6 however, that is very low. I’m taking both supplements now. The B6 are tiny but hard to get down and I don’t usually have an issue with pills. They have a very salty/bitter taste and get stuck if I’m not careful.

      No mention of shots, but like I said, B12 isn’t as bad as the B6.

      I Googled B12 and B6 deficiency together and it warns it can put you at risk of heart disease, stroke and dementia. I read that and that’s when I started taking the B6 as well! Funny…not funny.

      Anyone else have vitamin deficiencies to discuss. Doesn’t have to be B12 or B6 specific.

      • jen-cueva

        October 11, 2022 at 3:51 pm

        Hi @colleensteele, I’m glad that you are now taking both B12 and B6 after your Dr.Google search, LOL.

        Can you take the B6 first and wash it down with something tasty? Maybe that will take care of the taste.

        Of course, vitamin and mineral abnormalities are often associated with the addition of kidney disease. That’s why my nephrologist does my labs so often to keep mine in check.

        Hopefully, you don’t get many new symptoms, and the neuropathy will ease for you.

    • jen-cueva

      October 11, 2022 at 3:46 pm

      Thanks, @s-steppins; I am sorry to hear that your hubby was recently diagnosed with anemia. There are several different types of anemia. Based on that is how it is treated. But fatigue and brain fog seem to be a given with all anemias. Hopefully, they can get him started on a treatment plan that will help.

      I’ve struggled with keeping my potassium within the normal range(for me) for years. But mine is due to my many diuretics and kidney disease. Which diuretics, if any, are you taking? How are your kidneys functioning?

      The cramping that comes along with low potassium and the palpitations is no fun. I hope you can keep it high enough to be within your normal range.

  • david-chapman

    October 11, 2022 at 2:16 pm

    I always struggle to keep my potassium at normal levels. I have been recently diagnosed with anemia but I think I have been anemic for quite some time now that they just overlooked because they had only my nurse paying attention to my normal lab work. Just start iron otc supplements. I hope to see improvement because I think a large portion of by brain fog and fatigue are due to the anemia.

    • jen-cueva

      October 11, 2022 at 3:54 pm

      Hi @dpchapman, I hope the OTC iron supplements will help your anemia symptoms. I know it can take some time with those. Of course, the main concern with iron supplements is constipation. Eat some fiber and let your medical team know if you have any issues. How long have you been taking the OTC supplements?

      Indeed, brain fog and fatigue can both be from anemia.

    • Colleen

      October 21, 2022 at 1:41 pm

      @dpchapman I sent you a direct message regarding “30 Days of PH”. Would you be interested in participating? You can contact me at [email protected] and I will send you information. Thank you!

  • germaine-norwood

    October 11, 2022 at 3:16 pm

    Hello everyone,

    I have been diagnosed with anemia and am getting Iron infusions. I   have  been referred to a Hematologist to determine if there are any additional problems as this appears to be an ongoing issue. I also have a B12 deficiency. Neither of these issues existed before my diagnosis and treatment  of IPAH. My symptoms are also fatigue and shortness of breath which had been significantly improved with my PAH medications. While the shortness of breath and fatigue have returned they are not as severe . I do hope to get a more definitive answer to the causes of the anemia when I meet with the Hematologist in about a month.

    • jen-cueva

      October 11, 2022 at 4:01 pm

      Hi @mgnorwood, sorry to hear that you, too, have been diagnosed with anemia. Are you already receiving iron infusions, or will that be after you meet with the hematologist? I was under a hematologist and received iron infusions before we relocated. I need to find a new one; thankfully, my numbers are not too bad.

      I also do self-B12 injections monthly. At first, they did one and ensured I felt comfortable doing my self-injection.

      That’s excellent news that your SOB is improving with your current PH treatments. Thanks for the update. Please keep us posted and how we can support you when you see the hematologist next month.

  • jen-cueva

    May 30, 2023 at 2:07 pm

    Hi @dawnt, you may find this post helpful. Vitamin deficiencies are common and can be uncomfortable and challenging to manage.

    I had one iron infusion this year, and my insurance denied the other two. Thankfully, the one put my iron levels near my baseline, so I am holding stable and hope not to need more.

    Low potassium and sodium are ongoing challenges for me. My labs are done every other month now. That’s a positive because it was every other week at one time. My chronic kidney disease (CKD) doesn’t help.

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