At last I've found you all: Hi everyone... - Pernicious Anaemi...

Pernicious Anaemia Society

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At last I've found you all

magSLE profile image
3 Replies

Hi everyone,

Recently I joined this forum as last yr, I had debilatating Anaemia fr Jan until May. My body wasn't digesting Ferrous Fumerate so my iron intake didn't increase, even tho my levels were low & below average, my GP wouldn't refer me for liquid Iron Infusions. GP advised me to ask my Rheumatologist for a referral who then told me it was the GPS duties. Meanwhile, I couldn't function & was sleeping most of the time when I wasn't dizzy, faint or losing hearing,

2013, I was so Anaemic that I had a blood transfusion, (Pneumonia & APS - a Thtombosis Condition). 2014 - I had Eye Cancer which was successfully treated.

In March 2016, my dad was in hospital for wks with Anaemia & had about 5 blood transfusions, only to be told he actually had terminal Liver Cancer which couldn't be treated. Sadly dad passed in June 2016.

I read a post about a member who went thru similar situation but was diagnosed with Leukemia (I think).

Since Jan 2015, I'm still taking Ferrous Fumerate (3 pills a day), I'm glad that my body is now digesting the pills so I'm functioning as normal. I wonder if I'll have to take those pills for the rest of my life. I take other meds so wonder if these increase the risk of natural or on intake.

I've always eaten a lot of green veg like Spinach, Lettuce, Kale & Brocolli on a daily basis which are high in Iron. Red meat works for me in terms of Iton & Protein intake.

Also, I live with other health conditions as well like Lupus Disease (SLE), Antiphosolipid/ Hughes Symdrome (Thrombosis), Retina Ischemia, Rheumatoid Arthritis, Raynauds Phomenon, Fibroids, Possible Endometriosis.

Looking forward to learning more about this condition & others relative experiences.

Take care x

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magSLE
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georgie63 profile image
georgie63

Hi Magsle,

Wow, you've been through a hell of a lot haven't you !!

At least your body is now accepting the iron tablets now which should make it easier for you.

Just recently I've had a Superficial Thromboli in my thigh. At first I thought it was a bite but then my whole leg went bright red and luckily my gp sent me to A&E where it was diagnosed.

So I'm on blood thinning injections for six weeks. I've done 4 weeks just two to go now. But God my stomach looks awful, it's so bruised and my appendix scar I'm quite worried about as its got bigger. But we'll see how we go.

I didn't realise that people with Lupus are prone to blood clots apparently, that's what the anticoagulant clinic told me anyway.

Ok magsle well it's lovely to hear from you, you keep hanging in there and keep taking the tablets.....lol

Have a lovely Christmas !!

xxx

taka profile image
takaAdministrator

Hi magSLE

Sounds like you've been having a difficult time with all your different health conditions. Sorry to hear that your Dad passed away a few months ago.

Just thought I'd check as you only mention iron deficiency anaemia... Have you got or suspect a B12 deficiency or Pernicious anaemia (PA)? There are several types of anaemia, one is iron deficiency anaemia which it sounds like you definitely have from your post above. Another different kind is called Pernicious anaemia, which is an autoimmune condition which leads to an inability to actively absorb vitamin B12 (which is essential in red blood cell production amongst other things).

B12 deficiency can also have a range of other causes than PA eg being vegan, diet, stomach /ileum surgery, coeliacs, different medications like PPIs and metformin. The chances of being B12 deficient increases as we age and PA / B12 deficiency also seems to occur more frequently in people who also have other autoimmune conditions. :-(

This paper mentions low B12 levels in SLE and RA patients ncbi.nlm.nih.gov/pubmed/127...

Quite a few of us with PA also have iron deficiency anaemia or an iron deficiency (but no anaemia yet - this was me!) but the 2 different anaemias have different causes and consequently different treatments. For PA/B12 deficiency it is B12 injections every 2-3 months for the rest of your life (unless it is diet related eg if you are vegan).

Apologies if you have PA / B12 deficiency and you already know all this but I couldn't see it mentioned above and I just thought I'd double check! If you don't have PA / B12 deficiency it may be a good idea to get your B12 levels tested anyway if you haven't recently. :-) Some of the symptoms of B12 deficiency (see last link below) can overlap with those of iron deficiency anaemia and with everything else going on the last thing you need is to be B12 deficient too!

Welcome either way! :-)

Some links about pernicious anaemia and B12 deficiency:

pernicious-anaemia-society....

pernicious-anaemia-society....

pernicious-anaemia-society....

magSLE profile image
magSLE in reply to taka

Thanks for the reply! I will read up on it. I've joined this group to understand this health condition more. My GPs never seem to get diagnosis right cos I have so many health conditions with similar symptoms. Wish I'd read up on it more when I had an Anaemia attack last yr for about 5mths but I was way too tired all the time. I take B12 liquid which seems to help my general energy levels. Also I'll read to find out if B12 helps with iron absorption. Thanks for the inspiration 🙏🏿

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