Hi everyone!
Im new to this group. Today i went to the GP to get my Thyroid blood results and the doctor was very concerned as my B12 level is very low, 107. He has precribed me Hydroxycobalamin injections to have every other day for two weeks but he doesnt understand why as I have a varied diet.
Im very worried about this incase there is an underlying cause as to why it is low.
Anyone that can shed some light would be super helpful!
Hi,
Welcome to the forum. Here's some links that may be of use.
I've assumed you're in UK.
Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/... (may need to be B12d.org member)
"worried about this incase there is an underlying cause as to why it is low"
I hope your GP is trying to find out what is causing your low B12 levels. If your diet is good eg plenty of b12 rich food such as meat, dairy, fish, shellfish, eggs then diet as a cause of becomes less likely and it's more likely that there is an absorption problem.
Risk factors for PA and B12 deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Coeliac Disease
NICE guidelines Coeliac disease (2015) specify that anyone with unexplained B12 deficiency, folate deficiency or iron deficiency should be tested for Coeliac disease.
nice.org.uk/guidance/ng20/c...
coeliac.org.uk/coeliac-dise...
H Pylori
H Pylori infection can lead to low B12 levels.
patient.info/health/dyspeps...
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart makes it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test. IFA test can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.
BMJ B12 article
BNF
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
B12 books I found useful
"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 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 with lots of case studies.
PAS (Pernicious Anaemia Society)
If you suspect PA is a possibility, may be worth joining and talking to PAS.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
UK B12 blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
Blood test results
Do you get copies of all your test results? In relation to B12, i look at b12. folate, ferritin and full blood count.
Access to Medical Records (England)
nhs.uk/NHSEngland/thenhs/re...
nhs.uk/chq/pages/1309.aspx?...
Blood test links
b12deficiency.info/what-to-...
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
I am not medically trained.
Your GP might find this article interesting and informative
ncbi.nlm.nih.gov/pmc/articl...
Low B12 with a good diet implies that you are developing absorption problems which is actually quite common with hypothyroidism, particularly if it is auto-immune.
There are many absorption problems that will lead to B12 deficiency - many of them are mentioned in the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders which can be accessed through the BNF but are also available here
onlinelibrary.wiley.com/doi...
The most likely cause is PA - which despite the name including anaemia is actually an auto-immune disorder in the gut. 25% of people who have PA don't present initially with anaemia - just that when it was first identified (long before anyone knew anything about B12) it was associated with a particular form of anaemia - but that was just a symptom of the underlying cause rather than the cause of all the problems.
it is possible that the PA may actually predate the thyroid problems - which seem to be quite recent - the body stores B12 in good quantities in the liver and is quite efficient in how it uses B12 but the mechanism by which you absorb B12 from your food is the same as the one that is used to release your stores of B12. It can take years, or even decades for levels to fall outside normal ranges.
Something like 40% of people with PA seem to go on to develop hashimotos.
Having PA is also likely to affect your ability to absorb levo as it results in lower stomach acidity.
IFAB test could be done to establish if cause is PA - a positive would confirm (unless done too closeto an injection which can give a false positive. The time interval varies from about 1-2 days to 1-2 weeks depending on the test method. However, the test tends to give false negatives about half the time so a negative is a long way from ruling PA out as the cause.
See that your post on TUK threw up a lot of stuff that feels quite scary - the reality is that B12 deficiency, even that caused by absorption problems, is actually easy to treat and there isn't any toxicity associated with B12 ... though it is also true that it is something that is often chronically under-treated.
It isn't PA that is more common in older people - it affects people of any age - it's more that absorption problems generally are more common in older people. It may be worth asking around in the family as well as PA tends to run in families.
Thanks Gambit62,
This is the first reply I’ve had that hasn’t made me feel like I’m going to die of vitamin B12 deficiency. It’s a lot to take in. Thanks for putting things into perspective x
you body is just likely slowly stopping how it stores B12. ask them to check parietal cell antibody to see if the parietal cells in the gut are able to absorb B12 anymore. you could also have MTHFR gene abnormality, which can run in families apparently and it can cause this. B12 deficiency is levels getting lower nad lower, but pernicious anemia starts when levels are so low that the blood cells try to compensate by making themselves larger.... I don't know your red blood cell or MCV or MCH levels but you're likely at that stage since you're so low. I bet you feel terrible most days. there is an excellent video on youtube about Sally Pacholok how she fought the medical community to get info out and testing for potential B12 deficient patients, but it documents tons of symptoms... it's made into a movie form, look her up on youtube
Ellen-C, MTHFR causes a metabolic problem (in your cells) not an absorption problem (from your food into you blood and it affects folate a lot more than it affects B12.
The anaemia associated with PA is a symptom of the B12 deficiency caused by PA. The name of the condition is an historical accident as it was first observed as a form of anaemia long before anyone actually knew anything about vitamin B12.
People vary a lot as to which symptoms develop first - anaemia is commonly amongst the first to manifest so about 75% of people have macrocytic anaemia when the first present but 25% develop other symptoms first - which could be neurological or neuro-psychiatric.
Thanks Ellen-C🙂 I do feel awful, I work full time 9-6 in a pharmacy and when I’m not there I spend all my time sleeping and when I wake I’m soaking from sweat. I just want to feel better. I’m very stressed about getting time off work to go to all these b12 injection appointments but what can I do I need them. My doctor seemed very concerned as to why my b12 is so low,at 107, is this something to worry about? Xx
Hi there, welcome to the forum.
If you have an absorbtion issue, likily since you eat a varied diet, please ask your doctor to check your levels for folate, a full iron panel, and vitamin D. These nutrients seem too many times be deficient when you have an absorption issue.
You can check into betaine HCL which will help your body to absorb the nutrients from the food you are eating. Your body needs zinc in order to produce stomach acid on its own.
Best of luck and health. And hugs for you while you sort this out.
Thank you so much xx
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