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Ferritin has increased to 80 but still feel awful.

Posted , 5 users are following.

helen63401
helen63401

Hello, I have had low ferritin for the last four years. It was 5 in 2012 and was still only 15 this time last year, despite taking iron tablets three times a day prescribed by my doctor. During this time I have suffered with continuously with dizziness, fatigue, brain fog, blurred vision and I am always cold. The dizziness is so bad I haven't been able to drive since 2012.

I was on omeprazole for a hiatus hernia for all of that time and after doing my own research realised it was hindering my absorption of the iron. I came off it and from August 2015 to now my ferritin has increased from 15 to 81!

The only thing is I still feel rubbish and have all the same symptoms. I only found out its 81 today, and expected it to be at around 40, so I was surprised.

My question is, should I feel better now it's at 80? Does it sometimes need to go higher for symptoms to go? If so, how high should I be aiming for? Or given that it's been low for so many years does it take time to register with my body and the symptoms to go? Or is the fact that I have thought my iron was still low all this time that has been influencing my body and causing these symptoms? Is it placebo effect?

I feel like I'm going mad. I've felt so awful for the last three years, it's hindered me doing lots. So now to hear it's at a reasonable level but not to feel better is a real downer.

Any advice or insight would be greatly appreciated.

Thank you!

0 likes, 4 replies

4 Replies

  • Reifenstein22
    Reifenstein22 helen63401

    Posted

    Hi!

    I have been chronically anemic for the last 2 yrs. in January my ferretin was 3, iron was 8, hematocrit was 22 and all my other iron related labs were crazy off. I received 2 units of blood and didn't really feel much better. The next week I received my first iron transfusion and didn't feel much different (still felt like I was gonna pass out, cold sweats, generally feeling awful). The next week I had my second iron transfusion and the next day and for about the next 10 days I felt close to normal (I think, since it's hard to remember what that feels like)! I had my labs drawn and my ferretin was 159, iron was 40. So I thought sweet I'm good now. Well after about 10 days I started feeling that same old crappy feeling again. I had my labs drawn and my ferretin was down to 74, iron was down at 32. So they ordered me to get 2 more iron infusions tomorrow and next Thursday. So for me, I felt noticeably better when my ferretin went up to 159 compared to crappy again at 74. I'm a little concerned that 2 more infusions is too much and I don't want to go into iron overload with the opposite problem. But my dr seems to think it's fine. I will have my labs checked again afterwards so we will see! But you may be like me where your normal ferretin is in the 100s or higher. I know that my body used up all of that iron after the infusions to make hemoglobin as my hemoglobin was only 6 initially. So hopefully I'll be sustained for a while after this next infusion. Good luck and hope you feel better!

    • helen63401
      helen63401 Reifenstein22

      Posted

      Hello Reifenstein22,

      Thank you so much for your response! I'm so grateful to have your perspective as I haven't come across anyone who has for their ferritin up to the 100s and can tell me how they felt. I am so grateful.

      I am sorry you have had a terrible time too, it's truly amazing how significant ferritin can be in our wellbeing. I do hope you manage to keep it up and at a level. I begged my GP for iron infusions for three years when my ferritin was at 5, she would not give them to me. It was very frustrating and at times I felt desperate. I'm so glad that you seem to have had more luck with this.

      Hope you continue to feel better and thanks for your reply.

      xxx

  • maisie05
    maisie05 helen63401

    Posted

    Hi, I too have had the problem of omeprazole inhibiting the absorption of iron. I'm had low ferritin, between 11 and 14 got last two years despite taking ferrous fumerate all that time. Only by doing my own research and finding this website have I linked the problem. Can't understand why my doctor didn't tell me. I've felt fatigued and dreadful for so long. I stopped the omeprazole gradually 4 weeks ago and have yet to have iron levels taken. I had gastritis so managing that with occasional rennie. How did you deal with your hernia problems after stopping omeprazole? Did you have any withdrawal problems as some others have on here?

    Hope you are feeling well

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