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Low Iron Storage (Ferritin) And Mild Anemia In Pots And Nms


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I have very low ferritin (5) as well as low red blood cell mass but my hematocrit & hemoglobin always come out ok. For that reason dr's don't take it seriously. I finally convinced one to let me take a small dose of iron 75 mg. a year later my ferritin only went up to 8. Grrrr

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Thanks for the article.

When my symptoms were at their worst, I had anemia and exceptionally low ferritin. I'm on my third year of extreme iron supplementation and iron stores are slowly building back up.

In my case, I know low iron didn't cause dysautonomia because I've been this way since birth, but the low iron definitely made the symptoms worse, particularly fatigue and fibromyalgia.

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Good article. My son had low iron and it took about year to get it back in range. His POTS started after a virus.

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Thank you for the article.

My ferritin was at 7, when I was diagnosed. I took iron for several months and was able to bring it up to normal. I stopped supplementing and within 2 months it went back down to 7. I'm taking 150mg of poly-iron a day, again.

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This one has been a huge issue for me.

My iron goes very low and I've required IV iron to bring it up.

It tends to go in spurts where I do okay for a while and then it just starts dropping extremely low.

They were really looking at it as a female problem and it was suggested I have a uterine ablation to control bleeding during menstrual periods but I really wondered if that was the source of my anemia.

After reading this article I have a tendency to think it's most likely related to my POTS condition.

It took them a while to find my anemia and after they did I requested to see a hematologist.

I felt very very bad like I was on the verge of collapse before my first treatment and in a years time got that way again.

The anemia tends to hit me in the fall for some reason I don't know why that is.

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Interesting. I was just reading an article this evening by a ME/CFS specialist stating that ferritin levels lower than 50 needed to be supplemented to help with fatigue especially. Timely posting on this article. Thanks!

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  • 2 years later...

I just came across this post through a search. Although few years old, its still pertinent to me. I noticed quite a few of us here have low ferritin levels. I do as well, requiring iron infusion because I cannot tolerate iron by mouth due to how autonomic nervous system dysfunction has affected my gastrointestinal tract. I see a hematologist who is clueless as to the cause of my anemia, low ferritin level and EPO level. The anemia has no known cause until I came across an old research article about anemia and autonomic nervous system dysfunction. Basically the anemia is CAUSED by the condition. It is the effect of the autonomic dysfunction on the hematological system. it causes a reduction in the production of mature Red blood cells in the bone marrow, It helped me understand the importance of anemia management to aid in my symptoms; I couldn't believe how low some of your ferritin levels were and none of you had iron infusion. It awful how some doctors are so clueless in management of conditions such as anemia , I hope all of you have gotten better care by now.

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Marigold,

Thanks for bringing this up again. My mom and I were discussing her low ferritin levels and her hematologist wanted to start IV iron again. She's had it before. He said that they would have to wait until it drops another point or insurance wouldn't cover it. We were thinking that it's probably part of her lupus and autonomic system. Incidentally, my daughter had a bone marrow biopsy a couple of years ago to check for mast cells, and an incidental finding was that she had no stored iron in her bone marrow. It makes sense with the whole dysautonomia.

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Thanks Marigold!

I'm going to print this out for my next visit with the hemotologist. He hasn't been able to understand why I don't hold the Iron and I didn't want to go through with a uterine ablation just "to see" if it helped. This so called hidden anemia seems to cause problems for a lot of us. The CBCs look relatively good until they actually test the Iron and Ferritin. My Ferritin was a 3. Perscriptions weren't helping so they wanted to have me take more. My GYN mentioned the infusions and I had 4 (once a week for 4 weeks). Helped so much with my fatigue and dizziness. My numbers started dropping again pretty quickly so I am now on a schedule of 1 infusion every 3 months. Fine with me - keep pouring it in!

Thanks again for digging this article up!

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I had low iron and copper levels and was borderline anemic. My doctor said since males typically have high iron levels he told me not to take any iron supplements. I don't think he realizes I'm anything but topical. I eat red meat every day and that has helped. I can tell when it's getting low because my nerve pain gets worse if I've missed a few days. Couple days of buffalo steaks and I'm much better.

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