Ferritin levels and B12 recovery - Pernicious Anaemi...

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Ferritin levels and B12 recovery

Booksellercate profile image
23 Replies

Will optimum ferritin levels eg 80+ help to speed up the recovery of my red blood cell production?

My last ferritin level was 42. I've been prescribed ferrous sulphate to help raise my levels but my understanding is that iron levels raise slowly and gradually even on supplements.

I'm struggling with extreme weakness, lightheadedness, faintness. Macroscytosis is still showing on my latest blood test (2 1/2 months into daily injections).

Thanks for comments!

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Booksellercate
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fbirder profile image
fbirder

The body makes red cells in its own sweet time. If I recall correctly, it takes about 120 days for a complete turnover. So the microcytic cells your body produced 80 days ago will still be floating around in your capillaries.

But you do want decent iron levels so that e red cells it is producing have enough haemaglobin in them. Iron sulfate has one good thing going for it - it's cheap. However, it is not easily absorbed - especially in people with low stomach acid, like most people with PA.

You can help the absorption of iron from the sulfate by taking it with ascorbic acid (Vit C) and citric acid. Tesco do a nice, effervescent, VitC tablet that has both of those.

Alternatively, take your iron in a more soluble form - bisglycinate or cumulate are popular. I take Solgar Gentle Iron.

Booksellercate profile image
Booksellercate in reply to fbirder

Thank you.

I am trying to find out what works.

6 weeks ago my ferritin was 46 and I tried to increase it with one sachet of Spatone (15mg iron) and Hema-Plex (85mg elemental iron). I thought this would be enough to raise my ferritin levels, even on B12 injections-however it dropped slightly to 42 in those weeks. I'm not sure if this is a maintenance dose on daily injections and I simply need more iron or if the Hema-plex and Spatone just didn't work for me.

I have a bottle of Solgar's gentle iron but I admit it's at the back of the cupboard as I thought the 25mg iron it contains wouldn't be enough to raise my levels.

PAS-admin profile image
PAS-adminPartner in reply to Booksellercate

Was only ferritin tested and no other iron test done? (serum iron, saturation, transferrin etc)

If you still have macrocystosis, which should have recovered by now if it was due to the low B12, then they should look at other causes. Your folate is ok? Might want to take that. Also have your thyroid tested if that hasn't been done. There are also some drugs that can increase MCV so it might be that, you can check with your dr or read the leaflets if you take any.

Solgar is excellent, like some other glycinates. The suplhate is high dose I assume, so it should raise bloodlevels fairly quickly.

Booksellercate profile image
Booksellercate in reply to PAS-admin

Serum iron was 18. I requested ferritin as I am on daily injections and I wanted to check my levels-not because there seemed to be a specific issue with iron?

Should it have recovered after less than 3 months on injections? I've been quoted different timescales-some say 4+ months (120 days cell replenishment). Doc simply said that macrocytosis is not corrected "overnight".

Folate levels are high-I'm taking 4mg a day and had high levels to start with.

I keep being advised to be patient-I've had a couple of comments on another forum which suggest that lower ferritin levels will not be helping me out!

PAS-admin profile image
PAS-adminPartner in reply to Booksellercate

Macrocytosis usually recovers in a few weeks if enough B12 is given, and you're getting more than enough. So yes it should be normal now if it was only due to B12. The ferritin is not that low that it should give a lot of symptoms IMHO. Your thyroid is ok? No drugs that could increase the MCV? How high is it, the MCV? But more importantly than the high MCV is how you feel. How much improvement have you felt the last months?

Booksellercate profile image
Booksellercate in reply to PAS-admin

Thyroid is fine-I had that tested privately.

No drugs. MCV is only slightly elevated beyond range-99.8 on the last test I have results for. MCH elevated too and the nucleated red blood cell count.

How do I feel? Not good! Some improvementson injections - painful, weak legs are just starting to get better. I've had 10 days of relatively normal legs now. I have a lot of symptoms, most are starting to see small improvements.

The weakness and lightheadedness are still bad enough to leave me virtually housebound.

I cannot think what else would be causing the macrocytosis-everything pointed to B12 deficiency.

I don't drink and my liver was screened in the blood test ordered after the macrocytosis showed up.

PAS-admin profile image
PAS-adminPartner in reply to Booksellercate

Good news that you are experiencing improvements, that means it's working :) MCV 99.8 is not really that high, wouldn't worry about it. Then it is probably still recovering. The weakness is one of the things that takes the longest to recover, unfortunately.

Booksellercate profile image
Booksellercate in reply to PAS-admin

I hope so! The permanent lightheadedness is really debilitating. I feel permanently drink :/ not sure if this is a result of less than ideal blood or neurological damage somewhere. Brain MRI was clear...

PAS-admin profile image
PAS-adminPartner in reply to Booksellercate

Oh I know, been there...don't forget your body has a lot of work to do, repair a lot after years of deficiency, so the energy is going there. It's most likely 'just' recovery. It should get better soon, you could try and keep a diary so you notice also the smaller improvements. It could help..

fbirder profile image
fbirder in reply to Booksellercate

Well, 120 days seems to be the accepted standard - ncbi.nlm.nih.gov/pubmed/774... - which means that about 2/3 of your RBCs will have been replaced after 80 days. If they measure the average volume (MCV) then that may still be high. If they actually look at the cells then they should spot some large ones and lots of nice, shiny new ones that are smaller.

Your 100 mg of iron in a chelated form should be enough to get levels up

PAS-admin profile image
PAS-adminPartner in reply to fbirder

True, but when you start injections a reticulocyte crisis occurs and a high amount of them are made in a very short time. The replacement goes faster than in normal circumstances. Takes about 4-5 days for reticulocytes to become erytrocytes. So MCV should go down within some weeks, although for complete recovery it might take longer of course, depends also on how severe it was I guess.

fbirder profile image
fbirder in reply to PAS-admin

OK, I learn some more.

engels profile image
engels in reply to PAS-admin

Am I correct in thinking that the reticulocyte crisis is what can cause hypokalaemia (low potassium)?

PAS-admin profile image
PAS-adminPartner in reply to engels

Patients presenting with severe anaemia may develop a transient hypokalaemia

following treatment, the clinical significance of which is unknown(Carmel 1988), and potassium replacement therapy may be considered. In patients presenting with anaemia, a reticulocyte response should be evident by 7-10 days provided the patient has adequate levels of iron and folate. If a haematological response is not achieved the initial diagnosis should be reviewed. A suboptimal response may indicate previously masked iron deficiency or presence of another co-existing cause of anaemia. ( BCSH Guidelines for the diagnosis and treatment of

Cobalamin and Folate disorders )

Booksellercate profile image
Booksellercate in reply to PAS-admin

Third time lucky for this reply!

Is it possible then that my ferritin levels have been too low for an efficient reticulocyte crisis?

I am only assuming the severe and persistent lightheadedness is a result of macrocytosis and inefficient red blood cells (nucleated red blood cells have also shown up on some of my FBCs). It is possible that the macrocytosis is symptomless and the lightheadedness has a neurological cause I suppose..

The macrocytosis has always seemed link to my issues with B12-the timescale, symptoms and B12 figure.

PAS-admin profile image
PAS-adminPartner in reply to Booksellercate

With 42? No, unless it was false high due to an infection/inflammation but then it would be (quite) a bit higher. I believe it's more likely the lightheadedness is a B12def symptom that still has to recover, or something separate. What did your GP say about it?

Booksellercate profile image
Booksellercate in reply to PAS-admin

Nothing. I'm think my neurologist is going to dispatch me back to the GP. I haven't been diagnosed with anything yet. They know I am self-injecting B12 and are happy for me to continue. My tests keep coming back clear.

fbirder profile image
fbirder in reply to Booksellercate

Oooh! Those Hema-Plex guys are a lot of naughty people. Yes, they contain 85 mg of iron - in three pills!

So taking one Gentle Iron would provide just about the same amount of iron as one Hema-Plex. At one-quarter the cost!

Booksellercate profile image
Booksellercate in reply to fbirder

I do actually take 3 a day! They also cover my B vitamins so 85mg iron + B vitamins and a few extra treats seemed like a win-win. It came recommended from another sufferer. I don't know if it's worked or not or if I should switch my iron and take a B-complex separately.

ndodge profile image
ndodge in reply to Booksellercate

Hi Booksellercate,

My ferritin levels were at 30 when I started taking Solgar Gentle Iron. I took 2 a day as per my doc's instructions. In about 6-7 months, my ferritin level was 76. So it does work but 2 a day instead of just one. The doctor was pleased, she felt like my levels had increased at a good rate.

Best of luck! :-)

PAS-admin profile image
PAS-adminPartner in reply to ndodge

True Solgar gentle iron, like some other brands of glycinate (there are quite a few good ones) work well in most cases. I can keep my level balanced with one. But always take care when taking iron, and re-test after a while to see you are not getting too high/taking too much.

Booksellercate profile image
Booksellercate in reply to ndodge

That's useful to hear-thank you!

deniseinmilden profile image
deniseinmilden

Consider taking a broad spectrum multivitamin and mineral supplement rather than just a B-complex as a wide range of vitamins and minerals plus amino acids are required for full metabolism of the B12. I find Tesco's A-Z multivitamins and minerals is comprehensive and not expensive.

Make sure you are getting enough potassium and magnesium too. The muscle weakness could be due to this. Google has lots of information on these.

After a few months I had to change from folic acid to methylfolate to keep everything working.

It takes about 6 weeks under optimum conditions to increase the nerves in muscles and this must happen before muscle density/strength will increase. As so much of your B12 is being used for repair at the moment there is probably a limit on that available for new nerve cell growth so this may be limiting your progress.

I'm still improving after more than a year of daily 1.5 mg in 1 ml jabs and others report improvement after more than 5 years of daily treatment so try to get all your cofactors balanced and look forward to getting better (even if never perfect, sorry), whilst keeping an open mind to other issues too.

Good luck!

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