I don't have Pernicious Anaemia so sorry for posting however I though that you be able to let me know if my B12 level is something I need to keep any eye on.
For the last year or so I have been having problems keeping my Ferritin, Folate an Vitamin D levels up, I'm not vegetarian/vegan it good and I actively try to eat foods high in Iron/Folate however the levels keep falling when i come off prescribed supplements. I was checked extensively for Ceoliac and Chrons disease but nothing was found.
Anyway, In the last letter between my Gastro and my GP the Gastro noted that my B12 level is falling (July 18 - 461 ng/L, Nov 18 - 389 ng/L, May 19 - 288 ng/L) I know these are all normal reading but I wondered if you think I should ask for the GP to check it again in a few months? With my folate/Iron they treat it and then I have to really push the GP to test again a few months later when I start falling asleep at work etc.
Sorry for the long and probably confusing post.
Thanks
Will
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Will4318
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I would keep an eye out for possible symptoms of a deficiency - pernicious-anaemia-society.... - because you are likely to spot those before your blood levels drop below 'normal'. Then you can go ask for a blood test. But it wouldn't hurt to have them checked annually.
I also struggle to keep ferritin and vit D up. Ferritin has only been a problem since b12 was low and having injections to treat. No reason has been given. I also push for blood tests as not making sense. I'm due one in July 3 Months after last. Have been supplementing with iron still so will see. Yes keep checking levels . If you do get low b12 you need to get treated. Definitely go by your symptoms not numbers. Hope that helps
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not mention recent BNF change.
"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 with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
PAS (Pernicious Anaemia Society)
Based in Wales, UK. has members in other countries.
Internal parasites eg fish tapeworm? Do you ever eat raw fish?
One potential sign of fish tapeworm infection is a rise in eosinophils ( type of white blood cell). eosinophil result will be found on Full Blood Count results.
The GP hasn't said anything about PA, It was just that the consultant pointed my B12 out. I am in the UK but saw a private Gastro, I had gastroscopy and capsule endoscopy done to look for Coeliac and crohns but they didn't find anything. They still suspect something is happening just so far don't know what.
More than anything its just frustrating to see another number falling
I will try to push to get the B12 tested again in a couple of months,
Might be worth you joining and talking to PAS. They should be able to point you to useful info. Details in my other post.
When you said "I don't have Pernicious Anaemia" I assumed you had been told by a doctor that you don't have it.
If I understand correctly, you have not been tested for PA, so there is a possibility that you may have it. The flowchart I linked to in my other post outlines the process UK doctors should follow to diagnose PA. If you're in UK, has GP followed this process?
UK guidelines make it clear that a person who has the symptoms of B12 deficiency (with other causes of symptoms excluded) should be treated even if B12 levels are within normal range to prevent neurological damage. See BMJ and BSH links in my other post.
Link about writing to GP if symptomatic for B12 deficiency with in range B12 result.
Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, tremors, restless legs syndrome, memory problems, words finding difficulties, balance issues, vertigo, migraine etc?
If yes to neuro symptoms, have you been referred to
1) a neurologist?
2) a haematologist? See NICE CKS link in my other post if in UK.
I know from personal experience that it is possible to have severe B12 deficiency with a result that is well within range.
Have your doctors considered the possibility of Functional B12 Deficiency? This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
Be warned that B12 deficiency is not always as well understood as it could be among doctors. It can be misdiagnosed as other conditions.
There is a window of opportunity to treat B12 deficiency before there is a risk of permanent neurological damage so the sooner it is diagnosed the better.
The main symptoms I have apart from tiredness are constant headaches, my memory is bad, I'm more clumsy, and feel dizzy/loose my ballance a little.
My GP hasn't done anything with b12 yet, from my last blood test they put me on folic acid, iron and vitamin D but class the b12 as normal also my MCV is slightly low but the gastro told me that iron brings it down and folate/b12 make it high so it's not really useful in someone with both.
I need another folate test in a month so I will probably bring the b12 up then.
"headaches..memory is bad...more clumsy..feel dizzy/loose ..ballance a little"
These would usually be considered as neurological symptoms.
Perhaps you could request a referral to a neurologist but be warned they won't necessarily know more about B12 deficiency than your GP.
"from my last blood test they put me on folic acid"
It's vital that any B12 deficiency is treated at same time as any folate deficiency or the folate treatment may mask the effects of the B12 deficiency. See Management section in next link for more details.
In UK this would be an Intrinsic Factor Antibody test (IFA).
It might be helpful to take copy of BSH flowchart with you. Flowchart indicates that patients who are symptomatic for B12 deficiency should be tested for PA.
Flowchart from BSH Cobalamin and Folate Guidelines
It's still possible to have PA even if IFA result is negative (called Antibody Negative PA). Some UK GPs may not be aware of the possibility of Antibody Negative PA.
If you're a PAS member might be worth trying to speak to PAS before your appointment as they can recommend useful info to pass on to GP.
So I saw the GP, whilst they said it was abnormal that my B12 has fallen however they don't feel they need to test anymore at the moment. My folate level is 1.4ug/L and im microcytic so they want to retest my B12 in 4 months after I have finished my Iron and Folate replacement.
Just wanted your opinion on whether to go back to the doctors or not, I'm 1.5 months into my Folic acid/Iron/Vit D and my plan was to wait the 4 months then go back for them to recheck everything. I don't really want to go back sooner as I don't want to go unnecessarily however I have started to struggle with the dizziness more, it comes on about a second after standing up or sometimes when I go up stairs, this as been happening for a while but it now seems more frequent and takes longer for it to go away (5ish seconds), because of it I have fell over 3 times today.
I fainted so went back, they checked my blood pressure and said I have postural Hyportension, they still want to check my B12 after I have finished my folate etc
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