Pernicious Anaemia Society
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Severe Anemia, Now got aching legs and short of breath?

Just wondering if anyone can help?

I visited my GP last year as I was feeling tired, no energy,pains in stomach, coughing, and being sick. I was told that I needed to have a blood transfusion as my Haemoglobin was 67 and Serum Ferritin was 1. I walked into A&E no problem and received 2 units of blood. I was told that I'd feel much better afterwards, but I was sweating and could barely walk with aching legs. GP put me on Ferrous Sulphate but didn't know why my legs were aching. I was also short of breath all of the time. Had a Gastroscopy & Colonoscopy carried out but nothing found. But I still have aching legs, short of breath, no energy, feel dizzy and confused.

Anyone know why I have aching legs and short of breath?

12 Replies
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Hi,

I've assumed you are based in UK.

I don't know why you have these symptoms (i'm not a medic) but some of these symptoms can be found in B12 deficiency. I found it helpful to ring the PAS.

patient.info/doctor/pernici...

Symptoms lists

b12deficiency.info/signs-an...

pernicious-anaemia-society....

See Symptoms Checklist

Websites about PA and B12 deficiency

pernicious-anaemia-society....

01656 769 717

b12deficiency.info/

b12d.org

martynhooper.com/

Books about PA and B12 Deficiency

Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

UK Documents/articles about B12 deficiency

Recent UK documents make it clear that a patient who is symptomatic for B12 deficiency should be treated even if their b12 results are normal range.

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Useful summary points

Google "BCSH Cobalamin and Folate Guidelines"

I read the whole of this document and then gave a copy of it to my GPs.

Testing

Have you had recent tests for B12? Folate? FBC (full blood count) as well as ferritin?

b12deficiency.info/b12-test...

patient.info/doctor/full-bl...

patient.info/doctor/macrocy...

patient.info/doctor/folate-...

patient.info/health/iron-de...

Have you ever been tested for Coelaic disease?

coeliac.org.uk/coeliac-dise...

coeliac.org.uk/coeliac-dise...

or Thyroid problems?

thyroiduk.org.uk/tuk/

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Classic B12 deficiency symptoms

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According to my blood results my B12 was fine. So it's a mystery why I feel this way.

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If it was the standard serum B12 test then it's not a mystery at all. That test is useless.

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Hi,what sort of b12 test should I ask for?

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What was your number and the range? If you are at the low end of normal you may be deficient. Many doctors are using a normal range that extends far too low. In Japan anything below 450 pg/mL (ng/L units in the UK) is considered a deficiency.

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My Serum vitamin B12 was 191 last time it was done. Is this low?

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What is your ferritin level now?

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It's now 7

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Well that explains your shortness of breath. Mine is 10 and I spend all day sighing. Iron is needed to carry oxygen in your blood - if you have low iron your body will not be getting enough oxygen which is why people with anaemia often feel short of breath.

healthguidance.org/entry/15...

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I have longstanding iron deficiency anemia - my HB has been right down as low as 55. If it slides gradually, I get few symptoms but the classic symptoms for me are aching in the muscles of my legs and shortness of breath. I have only recently been discovered to have B12d aswell. Often, my ferritin may rise only to fall again as it is used in creating more haemaglobin. I don't ever seem to get my iron stores high enough to sustain both. Some of my docs are hellbent on finding out why whilst others accept that some people simply don't store iron - reason unknown. I don't get the stomach pains and sickness that you experience - these could be important clues. I have lupus so my bloods are all over the place even on a good day. . . .

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Keep away from hospitals if that`s the standard of care on offer . I am disgusted at how many people have been left in the same situation as you . It`s not iron you need although taking a t-spoon of blackstrap molasses each day will be good for you as it contains iron , b6 and other useful minerals . You need to go and buy methylcobalamin yourself . You can get this in Holland and Barrett in spray form called Better You B12 Boost . A company called Jarrow do a methylcobalamin lozenge which goes under the tongue . I swear by beetroot juice because is has cobalt in it . Try and get one with a high beetroot content or juice your own better still .

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