Iron infusion due confused about levels

[expatkerry]

Hello everyone,

As part of my treatment for PA I'm having my 3 monthly iron infusion tomorrow. As I was excessively tired this week my GP ordrered a blood test. I was surprised to see my ferritin level maintained at 52 (it was 59 on 28/04) but this is probably due to monthly B12 injections. My B12 hasn't moved much at 358 so the fatigue could well be due to B12 rather than iron (although I also have really bad restless legs at the moment). The GP hasn't communicated the results to my specialist. I'm afraid I will have too much iron if I say nothing and have the infusion, on the other hand if she decides to cancel the infusion perhaps I'll get worse, and trying to get an appointment is a nightmare. Some advice would be appreciated.

[expatkerry]

I forgot to mention that my red blood cells are enlarged.

[Gambit62 Administrator]

Macrocytosis - large deformed red blood cells - is a classic symptom of B12 - as are restless legs.

Iron infusions aren't a treatment for B12 deficiency/PA - they are a treatment for an iron based anaemia. Ferritin is a measure of iron so low levels are indicative of an iron based anaemia.

Many people do have issues with both B12 deficiency and anaemia caused by same and iron based anaemia - and probably relates to ability to absorb iron from food - just as you can't absorb B12 from your food - note from previous posts that you have absorption problems - so two problems going on not just one.

Whilst you can overdose on iron your infusions are being done by a medical professional so they are aware of the risks and wouldn't be going ahead with the iron infusion if it was a risk. Iron based anaemia is a bit more straight forward than B12 deficiency as the problem is definitely in the blood.

Whilst tiredness may be caused by anaemia (eg macrocytosis) that isn't the only mechanism by which B12 deficiency causes tiredness - I've never been anaemic but I've certainly experienced the tiredness - and others on this forum will be the same.

Keep the appointment - but ask your specialist when you are there if you are concerned.

[expatkerry in reply to Gambit62]

Thanks Gambit. I hadn't realised That not everyone has iron issues. And I put my restless legs down to low iron, This site is so helpful. I'm going to keep my appt at least my iron Will ne at an optimum level and I'll ask for more tests.

[Lily73]

I'm confused as to why you are having iron infusions as treatment for PA. PA (pernicious anaemia) essentially means B12 deficiency. So iron is not a treatment for PA - only B12 can treat PA.

(The name pernicious anaemia is misleading, because people think it is the same as iron anaemia. They are different things and need different treatments. Iron anaemia is microcytic anaemia, and the treatment is iron. Pernicious anaemia means b12 deficiency, which has loads of symptoms - one of the symptoms for some people is anaemia, but it is macrocytic anaemia. The treatment for this is B12.)

I'm guessing maybe you had both PA/b12 deficiency and iron anemia. It sounds like you are getting good treatment for your iron anaemia, but your current symptoms are probably due to low B12. How often are you having B12 injections? Have you had your folate levels checked? Both low B12 and low folate can cause enlarged red blood cells. I would carry on with the iron infusions and explore the reasons for the enlarged red blood cells. I'm not a doctor, but it would suggest to me that you either need more B12 or your folate is also low. Your doctor should be investigating the reason for the macrocytosis.

[expatkerry]

Thanks for the reply. I have big stomach issues with my PA and can't absorb iron but This Is the first time my iron hasn't dropped so Much, I think it's because I've been receiving monthly B12 injections since January. I'm going to ask for more in depth tests to confirm my low B12. My folate levels are fine. My concern was That an infusion would give me toi Much iron but I found some info which confirms That 50 is still low.

[Lily73 in reply to expatkerry]

Ahhh ok! Sorry for the explanation - sometimes people with iron anaemia post asking for advice, thinking that pernicious anaemia is the same as iron anaemia It's such a confusing area! Glad you found some info that confirms the iron levels. I don't know much about iron, as I was never low on that. I hope you get to the bottom of the macrocytosis - especially as you've been on monthly injections since January.

[fbirder]

If you have problems absorbing iron it's probably due to no stomach acid (achlorhydria). The thing that causes your PA is Autoimmune Gastric Atrophy. It kills off the Gastric Parietal Cells in your stomach. As well as making the protein that is needed for absorption of B12 (Intrinsic Factor - IF) they make hydrochloric acid.

You can go a long way towards fixing this by tasking your iron tablets with citric acid and ascorbic acid (vitamin C). Both of these help get iron atoms into solution - which is where they need to be to get absorbed.

Tesco do an effervescent Vitamin C tablet that contains decent amounts of both those acids and should help a lot with iron absorption.

The macrocytosis may take a while to clear up. It takes about 3 months for the body to make a new set of red blood cells. So it's quite likely that a lot of the cells in your blood now were made while your B12 was still low.

[expatkerry in reply to fbirder]

thanks for the reply. Unfortunately I can't tolerate ascorbic acid, the gastric problème are really bad including dysbiosis due to low stomach acid. What You Say about the cells being 'old' is interesting as my B12 shot is Next week and m'y levels are slowly rising perhaps I can Hope for some improvement in my symptoms

[Laura5]

52 isn't very low but it isn't very high either. I think rather than cancelling the infusion I would ask to discuss your concerns with someone before it goes ahead.

[expatkerry]

update: I've Just seen my specialist who wants me to have the infusion. She suggested bringing forward my B12 injection.