Iron infusion

Hi, has anyone had an iron infusion? Interested to hear if it made a difference?

I have PA and under active thyroid following RAI to treat Graves in 2014. I've really struggled with loads of symptoms this year and feel like I've slept the year away. Long story short, my ferritin was 6 and managed to see a haematologist privately (nhs haematologist wouldn't see me). I'm hopeful that an iron infusion will give me some life back and would like to hear some stories!

I self inject b12 ad hoc and take 100mg of Levo.

Thanks xx

10 Replies

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  • Hi Grifter. I have had iron deficiency anemia for decades. I've tried all the supplements and all the infusion types. My advice would be that if you can get the benefit from the tablets then this is best. The infusions are very potent and not without side effects however they do deliver results. Do you know which type they plan to give you? I'm not allowed to have them now due to hypersensitivity but I recall that Ferinject was the easiest to administer and tolerate but unfortunately very costly.

    I hope it works well for you x

  • Sorry to hear that you've struggled so much. I don't even know that they will give me an infusion yet so don't know any details. I struggle with the ferritin tablets, have bad stomach etc.

    Thanks

  • That is a very low ferritin result. What reason were you given for the NHS haematologist refusing to see you? Has your GP prescribed you any ferrous fumarate?

    With ferritin this low, your body will also struggle to convert your levo to T3..

  • Reason they won't see me is that I'm not actually anaemic. Apparently I'm producing the right amount of red blood cells but they're small. I'd have to be producing fewer for them to see me. Im not very clued up about blood cells, I thought I'd have large ones with PA? I do self inject though.

    And yes I'd heard that about not absorbing the Levo which is why I think I've been suffering. Unbelievable fatigue, headaches, aches and pains everywhere. I've developed arthritis in hands, have constant aching lower legs, shoulder and neck pain and of course our old friend tingling in hands and feet.

    Thanks

  • If your blood cells are small, that is one indicator of iron-deficiency anaemia. Along with your horribly low ferritin, that ought to be reason enough for alarm bells to ring.

    I notice that three months ago you posted on the TUK forum an RBC of 4.95 in a range you described as 10*12/L. I don't understand the notation, but did your GP think that was normal? Your TSH was way too high, and I wondered if you have since acted on the advice you received then about boosting your thyroid function?

    Edited to make sense. :-(

  • Hi, I spoke to my doctor about the tsh reading and he said the t4 reading is all they need and my thyroid is fine (!). So I thought I'd try and sort the ferritin levels first and see if that makes a difference. I had gynae procedure privately and it was the gynae that referred me to the haematologist. When I told him my ferritin level he said he thought I should have an infusion. So fingers crossed I get one and it helps. I will also try taking the Levo at bedtime as suggested previously. I didn't want to change anything before having blood tests with the haem.

    Thanks for all your advice

    X

  • You're welcome, and I quite understand your reluctance to do anything else before sorting out the low iron. Good luck with the infusion, but I feel alarmed on your behalf that you've been forced into the private sector to deal with this rather serious problem.

  • I know, it's ridiculous. I'm lucky that I have health insurance through work so I had that option. Quite aware that many aren't as lucky.

    Good news though saw the haematologist this morning and having an infusion on3rd Jan. V happy 😊

  • Yes my daughter did and it made a huge difference, the course was for 6 weeks, good luck

  • Thank you that's good to hear

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