Pernicious Anaemia Society
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In need of advice please

Hi there. I'm new to this and have no idea how things work. I do need some advice though please. I've been anemic now for 9 years. My levels were at there lowest (2.3) when I was pregnant with my 3rd son. I was undergoing IV iron every week. Made an improvement for one week and then it was discovered that I had a vitamin b12 deficiency. I was on ascorbic acid and ferrous fumarate. Few months later, my son was still born and then the ascorbic acid was stopped and I was put on ferrous sulphate. 3 years on and I'm still on the ferrous sulphate. My last blood count was taken August 2016 and the reading is worryingly low again (3.) .. is it not time that the doctor checked the cause behind this? Clearly the Meds don't work and there must be something there. One gp even said, and I quote "people with this level are expected to be laid in bed and not moving with the lack of energy. Your body keeps you going because you have had to live with this condition for so many years now"..

4 Replies

Hi janettemicc2909,

Welcome! I am sorry to hear about your iron problems.

Quick question: when you were found to be B12 deficient, did your doctor treat you with B12 injections or supplements? Do you know what your serum B12 level was?

Has your b12 been tested lately?

Some info about your b12 situation would be helpful! :-)


"then it was discovered that I had a vitamin b12 deficiency"

Were you given treatment for your B12 deficiency? Do you know what your B12 levels were when you were told you were deficient?

Do you have any blood relatives with PA (Pernicious Anaemia) or B12 deficiency?

Are you in UK?

B12 websites

pernicious-anaemia-society.... The PAS has members from around the world. USA website

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS. up to date with UK B12 guidelines

"Could It Be b12" by Sally Pacholok and JJ. Stuart. A very comprehensive book about b12.

If you have time it might be helpful to read the pinned posts on this forum (on the right hand side of this page) and maybe spend some time reading other people's threads.

UK b12 documents

1) BCSH Cobalamin and Folate guidelines

2) BMJ article about b12

Have you had recent tests for folate, B12 and a full blood count (FBC)....also known as complete blood count.

I am not a medic just a person who has struggled to get a diagnosis.


Intrinsic factor antibodies need testing. Ferritin (iron storage) needs testing. You can get far better quality iron supplements that the NHS gives you which are both very badly absorbed. When taking B12, you need the Methylcobalamine variety. Do you eat (red) meat, fish and eggs?

1 like

Have you been tested for coeliac disease?


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