I was diagnosed with Pernicious Anemia 5 years ago, bad story, long recovery and now watching for signs in my kids. My youngest (23 year old boy, history of Graves Disease) has consistently had B12 levels around 200. These are his most current test results and his doctor is not concerned and just suggests taking oral B12 daily. Should I be more worried?
Antiparietal Cell Antibody Result: 20.4 Units Standard Range: 0.0 - 20.0 Units
His tests results for PCA and IFA look borderline to me.
I'm not medically trained.
His serum B12 result appears within normal range but from personal experience, I know it is possible to have severe B12 deficiency symptoms with a normal range serum B12 result.
Does he have symptoms consistent with B12 deficiency?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
If he has symptoms consistent with B12 deficiency and a parent who has a confirmed diagnosis of PA, I would expect his doctors to consider PA.
In the UK, national guidance suggests that people who are symptomatic for B12 deficiency should be treated even if serum B12 results are within normal range.
Do you mind me asking which country you are in?
It might help people to post relevant info as treatment patterns and type of B12 used in treatment may vary between countries.
Has he asked his doctor if it's possible that he could have PA?
Does his doctor know that it's possible to have Antibody Negative PA?
About 10 - 20% of people with PA test negative on Parietal Cell Antibody (PCA) test
About 50% of people with PA test negative on Intrinsic Factor Antibody (IFA) test
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines ( a UK document) which mentions Antibody Negative PA.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful doctors.
Some links may have details that could be upsetting.
B12 levels in a person who doesn't have a B12 absorption problem will tend to be maintained at a level that is right for them using stores of B12 in the liver. If someone has an absorption problem then the release mechanism is also compromised meaning that stores get up without maintaining serum B12 levels and serum b12 falls.
If his levels have been around 276pg/mL and aren't dropping that would imply that that is roughly the right level for him. The test is only accurate to about 20% so you would be looking for drops greater than this to confirm a B12 absorption problem.
Please also be aware that there are 2 different units that can be used for serum B12 and although the results are similar they are not exactly the same. Also, different labs have different ranges because the sensitivity of machines varies so to be conclusive you need to be looking at results from the same lab in the same units - or the drops need to be really significant.
APC is prone to false negatives - the result is only slightly elevated so nothing pointing to Pernicious Anaemia as a cause of B12 absorption problems.
Intrinsic Factor Abs isn't a very sensitive test so it has a range that is trying to rule out results being confused with other metabolites. A negative result doesn't rule out PA as the cause of a B12 absorption problem.
The symptoms of Graves and B12 deficiency overlap so it can be difficult to know what is going on. Is the Graves currently well controlled with medication - if you need more help on that suggest that you post on the Thyroid UK form, if you haven't done so already (but please be wary of information stating that people with thyroid problems need to have high levels of B12 - they don't - they need levels that are adequate for them - so see my earlier comments on interpreting serum B12 test.
It is also worth noting that having one auto-immune condition makes it more likely that you will develop a second.
I am not a medical professional - just have a scientific background. I have two auto-immune conditions - PA and Hashimotos. Unless your son's previous serum B12 levels are significantly higher than at present (your post implies otherwise), I would go with your son's GP at this point - but continuing to monitor serum B12 levels would be a good idea given the high crossover on auto-immune disorders.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages of info).
Local B12 Deficiency Info
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
See blog post below if you want to know why I urge UK forum members to find out what's in their local B12 deficiency guidelines.
Were the blood test results you quoted from private blood tests or from NHS blood tests?
GPs in UK sometimes won't accept the results of private blood tests but perhaps you could persuade GP to repeat the same blood tests on NHS if they were private tests.
Thank you for all of the information. We are in the US. His B12 levels over the past few years have been up and down but all below 300. I do know that Mayo considers under 400 insufficient and under 200 deficient. Graves is under control - thyroid removed in 2013 after 2 years of nightmare. He's done with doctors and healthcare and it is understandable after the experience. Symptoms - in my opinion plenty of symptoms but could also be a result of being a 23 year old who works many hours and has a busy social life or just doesn't take his thyroid medication reliably. Also doesn't want to talk about the symptoms or his health arghhhhh and only did the labs because I bribed him with dinner out.I will review all of the links and continue to study. Thank you for the support!
Thank you for the information. Very helpful. His doctor has recommended daily b12 orally. Will this make future testing unreliable and are there even any conditions where oral b12 can be helpful? If a person with a good diet is deficient isn't it because of an absorption problem?
Has he had tests for Active B12( also known as Holotranscobalamin), MMA and Homocysteine as these tests can help to diagnose B12 deficiency in those with normal range serum (total) B12?
It is possible to have Functional B12 deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
May be worth looking up "Functional B12 deficiency" online.
B12 deficiency due to diet is likely to be helped by oral supplements....it is possible for a person to have more than one cause of B12 deficiency at the same time though.
My understanding is that in UK, severe dietary B12 deficiency should be treated with B12 injections.
Some people on this forum manage their B12 absorption issues by taking oral supplements as a small amount of oral B12 will reach the blood stream by passive absorption. Others, including myself, report that oral supplements are ineffective.
Links about oral B12 treatment
Note on oral treatment - B12 Institute (Netherlands)
Cochrane review (UK document) below said evidence that oral B12 treatment was as effective as IM B12 injections was of low quality or very low quality which I feel means there should be a lot more research using large samples of patients....I will not be volunteering however.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Can you please advice on low B12?
Borderline B12 test results - please help - no joy from GP
Vitamin B-12>1,500 pg/mLStandard Range139 - 931 pg/mL
Results of MMA test - does it mean anything helpful?
Some blood results
