Advice needed - Am I wrong in thinking my levels are incredibly low?

[daftfairy]

Can anyone please tell me what is deemed as low with regards to Ferritin levels.

My consultant informed Haemotogly ward to give me Infusions if my levels drop below 50ng/ml. I contacted the ward again today for my latest test results and my Ferritin level is at 13ng/ml but they are reluctant to give me an infusion. How low does one have to be to be deemed as needing replacement therapy???

I am really symptomatic lately, extreme exhaustion, skin feels like it is on fire, itchy and pins and needles all over my body, etc, etc, etc. I am so fed up with having to get on my hands and knees and beg for treatment

[Nackapan]

Below 10 ng/mg I think . The range enpurmousky

I've been told range 40-80ng/l to stay stay symptoms free

Surely the 'ward. Has to do what the consultant says?

[daftfairy in reply to Nackapan]

You would think so. But they reckon that there is no mention of it on my records, luckily I have kept all of my hospital letters so unfortunately for them, there is going to be yet another argument today

[Astridnova in reply to daftfairy]

Oh you poor thing - having to argue with hospital staff when you are so ill.

[fbirder]

This site is for sufferers with Pernicious Anaemia (and B12 deficiency in general). While it shares a word, it is totally different from iron deficiency anaemia (which is what ferritin levels are concerned with).

However, your symptoms may be caused by low B12 (and the same problems can cause both low B12 and low iron). Have you had your B12 monitored?

[Nackapan in reply to fbirder]

Oh I made an assumption!

As my low ferritin happened as part of b12 defiency . Good point if not already checked b12

[daftfairy in reply to fbirder]

Yes, I do have PA which is why I am posting on here. Ferritin isn’t the same thing as iron in your body. Instead, ferritin is a protein that stores iron, releasing it when your body needs it. Ferritin usually lives in your body’s cells, with very little actually circulating in your blood.

[Cherylclaire Forum Support in reply to daftfairy]

From my local lab, the "normal" range for serum ferritin is 13 - 150ug/L.

I am currently supplementing (additionally to multivitamin and mineral tablet) because I have been told by GP and a consultant recently that my levels are low and could be more useful to me at about 80 ug/L.

My levels have varied somewhere between 30 and 60 for years now, and although they once reached 66 after a 3-month course from NHS, 9 months later they were at 36.

My hair was falling out and my gums were bleeding. You must be on the floor by now !

I would expect more concern at your level as it is on the cusp .

There is a reason why ferritin and folate are monitored regularly when you are being treated for B12 deficiency, and you could reasonably have expected this deterioration to have been picked up at an earlier point. And addressed of course. At what stage an infusion is necessary..... with the right checks being made, that shouldn't even be an issue, assuming this deterioration was a slowish one. A very rapid one would surely ring alarm bells.

Has anyone on this forum been given an infusion because of low ferritin, and if so, can you remember the serum ferritin level that initiated the administration of one ?

[Holiday12345 in reply to Cherylclaire]

My ferritin is at 3 and I was just told to go take a supplement!

[Cherylclaire Forum Support in reply to Holiday12345]

...so if 3 doesn't get Holiday12345 a transfusion, daftfairy stands no chance !

I'm really trying with this additional iron, but so far hair is still falling out, and am I the only one who can still get daily diarrhoea when over-supplementing with iron ?

[Holiday12345 in reply to Cherylclaire]

😂 that’s what I thought. I have heard of others at 7 getting transfusion. I’ve managed to get ferritin up to 18 in 4 weeks by max dose of Galfer syrup ferrous fumerate and loads of steak... but obviously still low.... aiming for 100 by next summer! My stomach has been ok on it till this last week and now getting bloated and unsettled, but that maybe due to other supplements I’m taking(?), don’t know how long I’ll be able to keep this up. I’d read that hair starts to thin at a level of under 70