Pernicious Anaemia sufferer for 11 ye... - Pernicious Anaemi...

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Pernicious Anaemia sufferer for 11 years, now experiencing severe Iron deficiency anaemia. Type 1 insulin dependent diabetic for 50 years.

Bali1962
Bali1962
7 Replies

Hi,

I have 3 monthly B12 injections. I eat red meat and green veg. I have had recent blood tests that indicate I am extremely low in iron stores in my body and iron levels in my blood. I experience typical symptoms; tinnitus, itching skin but the worst is extreme tiredness.

I work full time as a teacher of the blind and with that comes a lot of travelling to work and between schools.

Pleas can anyone advise me why tiredness never goes away and iron levels always seem low despite taking ferrous gluconate 300mg tablets on and off for years. Menopausal symptoms and heavy periods gaveI have to work for financial reasons.

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Gambit62
Gambit62Administrator

It sounds as if you have a general absorption problem - probably lack of stomach acidity - which would explain not just the B12 problems but also problems absorbing iron from your diet.

Do you know if full blood count is showing any sign of anaemia - either macrocytic (large red blood sells) or microcytic (small red blood cells)? Either will affect the way your body transports oxygen from your lungs to your cells and will cause you to feel tired. You may have shades of both going on - which I think would show up as an elevated RBDW (bigger variation than normal in the size of your red blood cells.

The other thing that is likely to be going on is that you are undermedicated with B12. Whilst I'm sure there are people out there who do manage on the 3 month regime I personally haven't met one ... and it certainly isn't a regime that suits me. Unfortunately getting your GP to recognise that you may need more B12 is likely to be an uphill struggle. Many people supplement in between injections - sublingual sprays and tablets, nasal sprays and skin patches - but these methods don't seem to work for everyone.

The heavy periods are likely to be a sign that you are actually iron anaemic.

Have you talked things through with your GP ... or tried talking them through?

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Bali1962
Bali1962
in reply to Gambit62

I will make an appointment again with my GP. I will explain again that I may need more than 3 monthly B12 injections. My folate is good just now, just very low ferritin stores and blood iron. My diabetic control is affected but I am monitoring this closely. My appetite has decreased but I try. I am so busy I haven't the time to be ill and the fatigue is a big problem to me. Thanks very much for your advice. Alison

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Sleepybunny

I've assumed you're in the UK.

In the UK, people who have B12 deficiency where there are neuro symptoms, are supposed to get loading injections every 2 days for as long as symptoms continue to get better. Once symptoms have stabilised, it's an injection every 2 months.

UK B12 treatment info is in the "BSH Cobalamin and Folate Guidelines", about a quarter through document.

b-s-h.org.uk/guidelines/ click on box that syas "Diagnosis of B12 and Folate Deficiency" should be on page 3 or put "cobalamin and folate Guidelines" in search box.

Do you have any neurological symptoms? If yes, is your GP aware of them?

Links to lists of b12 deficiency symptoms

pernicious-anaemia-society.... click on Symptoms Checklist

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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Bali1962

Hi, yes I had the loading injections and 6 weekly ones 11 years ago when diagnosed. What types of neurological symptoms do you mean? Thanks Alison

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Sleepybunny

Neuro symptoms include tingling, pins and needles, balance problems, memory issues and many more.

If you click on the links to lists of B12 deficiency symptoms in my post above, it will give you an idea of the full range of neuro sympotms that can be associated with B12 deficiency.

You mentioned you are getting injections every three months. If you are in the UK, and you have B12 deficiency with neurological symptoms, then you should at least get maintenance injections every 2 months. There are quite a few people on this forum with b12 deficiency with neuro symptoms who have to really fight to get correct treatment.

Do you have a definite diagnosis of PA (Pernicious Anaemia) or is your b12 deficiency due to another cause?

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humanbean

300mg ferrous gluconate is a very low dose of iron supplement for someone who is very low in iron. The important number is how much pure (elemental) iron your supplement contains. And yours contains only 35mg.

evidence.nhs.uk/formulary/b...

I had very low iron and ferritin and I was taking ferrous fumarate 210mg at a dose of one tablet, three times per day. The elemental iron in just one tablet was 69mg. So with three per day I was taking 207mg of pure iron, which is realistically the maximum safe dose for most people. I certainly wouldn't take any more because iron is poisonous in overdose.

The tablets I took were sold in boxes of 84, which lasts 28 days at a dose of three per day.

I started off being treated by my doctor but she wouldn't supply more than two months worth on prescription. I took over and bought my own supplements and paid for my own testing. I absorbed iron so poorly it took me nearly two years to get my iron and ferritin up to mid-range. But as my iron levels improved I slowly felt so much better. Some people absorb iron much more quickly than me e.g. they may get up to optimal in about 6 months, but regular testing is always essential while supplementing iron.

Ferrous fumarate 210mg can be bought without prescription from some pharmacies (Boots is often awkward about this). I bought it without any problems from Lloyds and Tesco Pharmacies.

To do your own testing you can pay for a finger-prick testing kit here :

medichecks.com/find-a-test/...

medichecks.com/how-it-works/

When you get any iron testing done, post the results on this forum or the Thyroid UK forum and ask for feedback on your results. Levels should be tested every 3 - 6 months while supplementing, depending on how quickly you absorb the iron.

rt3-adrenals.org/Iron_test_...

When supplementing iron, each dose of iron should be supplemented with 500mg - 1000mg vitamin C. This serves two functions. Firstly, vitamin C aids absorption of the iron, and secondly it helps to overcome the problem of constipation which is a side-effect for many people when taking iron supplements. The dose of vitamin C should be adjusted so that you avoid both constipation and diarrhoea.

If you can't tolerate ferrous fumerate there are lots of other iron supplements available. Just ask.

If you eat meat then eating liver and/or black pudding is very helpful.

If you take thyroid medication then iron supplements and thyroid meds must be taken at least four hours apart.

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Bali1962
Bali1962
in reply to humanbean

Thanks for the information, I will ask the GP to change to ferrous fumarate and ensure I take vitamin C with them. Advice is much appreciated. My iron levels have been low for years so will put your ideas into practise asap. Alison

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