Log in
Pernicious Anaemia Society
16,697 members11,565 posts

B12

Hi I have come from thyroid forum. I am from the UK and tested positive for intrinsic factor. My symptoms are very odd - pins and needles in feet and legs, dry skin, pain in joints and in fingers, dark circles under eyes, vitiligo, hair loss, tiredness, depression, anxiety, dizziness, feeling unsteady, flatulence, heavy periods, weight gain, cold hands and feet, flaky nails. If anyone could help advise I would be grateful. Thank you

OCT 2017

Ferritin 45 ng/L (30 - 400) diagnosed iron deficient 2013, nothing taken for it

Folate 2.2 ng/L (2.5 - 19.5) diagnosed folate deficient 2016

Vitamin B12 228 pg/L (190 - 900) 1st B12 shot given August 2017

8 Replies
oldestnewest

Oh my! I imagine you feel aweful.

Your were given a shot or several shots?

Those shots were in August and your b12 was tested in Oct and was still only 228?

How much folate are you taking and for how long before these test results?

If you have inflamation, your ferritin needs to be over 100. Are you taking iron?

dermnetnz.org/topics/iron-d...

Reply

1 shot.

5mg folic acid and been taking folic acid for a year and then above test was done

Not taking iron anymore

Thanks

Reply

Your symptoms are all of a B12 deficiency.

Had your Dr started you the loading dose injections of B12.

Reply

No loading dose of B12 given

Reply

Are you on anything for the folate deficiency?

If you are based in the UK then your B12 treatment is not in accordance with current standards for treating an absorption problem - you should have been on loading shots 3x weekly until your symptoms stopped improving (with review at 3 weeks) and then on 2 monthly maintenance doses (as you have neurological symptoms.

Please refer your GP to the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiency which can be accessed via the BNF by a UK GP but can also be accessed here by anyone in the UK

onlinelibrary.wiley.com/doi...

if the reason your GP gives for not treating in accordance with the above is that you didn't have any macrocytosis then point out to him that the standards say that 25% of people who are B12 deficient present without macrocytosis and also state that in the presence of neurological symptoms prompt and correct treatment is needed to prevent neurological damage becoming permanent.

1 like
Reply

Folic acid 5mg for a year

Thanks

1 like
Reply

Hi,

I hope you have a GP who listens.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

"Folic acid 5mg for a year"

Hope GP knows that it is important to treat any co-existing B12 deficiency if having folate treatment. See Management section in next link.

patient.info/doctor/folate-...

B12 books

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

Martyn Hooper is the chair of PAs (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

B12 websites

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

+44 (0)1656 769 717

B12 Deficiency Info

b12deficiency.info/

B12d.org

b12d.org/

B12 blogs

Martyn Hooper's blog

martynhooper.com/

Also an interesting blog on B12 Deficiency Info website.

Lots more B12 info in pinned posts on this forum. I found summary of B12 documents in third pinned post useful.

I am not medically trained.

1 like
Reply

It looks like once you were given the shot your body used the folic acid and iron it had. If you get more shots and take some folic and iron your body will begin methylation and make new healthy red blood cells. This should improve how you feel.

Reply

You may also like...