I am coeliac but have been oob a strict gluten free diet for years. But although blood tests for B12 come back normal or sometimes over normal, I have the symptoms of low b12. I already have the Gio2 gene from both parents. Also another one from each that makes me prone to certain cancers. So I wonder if I don't absorb b12. I also have Hashimoto's.
Thank you for any assistance.
The fact that you have hashimotos means that you stand a good chance of also developing PA as both are autoimmune disorders. There has been some research recently that has helped to narrow down the genetic variants that make people more prone to developing auto-immune disorders. PA also tends to run in families but, as with hashimotos, it hasn't been possible to date to identify specific genetic variants that are involved. Part of this is because many of the genetic variants also require environmental factors to activate them.Given the overlap of symptoms of PA with other conditions - including hashimotos - it is very difficult to get a clear cut diagnosis - particularly as the test for B12 deficiency and the test for PA as a cause of B12 deficiency both suffer from issues that make them rather insensitive.
If you are testing serum/active B12 periodically look for significant falls in levels - 20%+ in the case of serumB12 but much less in the case of active B12 - these are indicators of B12 absorption problems.
Hashimotos also affects gut transit which can be another factor that contributes to problems absorbing micronutrients, regardless of whether PA is actually the cause.
Thank you gambit, but when I have blood tests I don't see anything about serum or active. Just one reading.
if you only have one b12 measure then it's likely to be serum B12 - the results should give you a range - the active B12 range will start around 37, active B12 around 200
I didn't quite understand that Gambit.
the results should give a normal range - you can tell if the B12 tset is active or total serum by looking at the range. If you are being tested for TSH then that may be the only result on the test
Serum b12 average range starts from 200 pg/mL (200-100)
E.g
100pg/ml (200-1100)
In brackets 'in range'
Looking at my latest B12 blood test it says Active B12. 110pmol/L
Is that ok then Nackapan?
My understanding is that reading is high / well in range. For an active b12 measured in pmol/l
As gambit62 the active ranges start around 37 pmol/ L
With the result the range is usually in brackets on the right.
Mine has always been in pg/ ml which is the standard NHS serum b12 test .
Remember you can still be in range and get b12 deficiency symptoms.
Other tests can ce done .
Functional b12 deficiency
It's difficult to seoerate symptoms if alot is going on.
I'd get as many tests as possible 'under ' one trusted physician.
At the same lab.
Check out folate,iron, vit D ect
FBC
To hopefully interpret and work out what is what.
Keep a log of symptoms.
One last thing please. Would sublingual b12 tablets be worth trying?
Hi,
Have you ever been tested for PA (Pernicious Anaemia)?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS membership is separate to membership of this forum.
Testing for PA
pernicious-anaemia-society....
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test.
Gastrin test
labtestsonline.org.uk/tests...
I've also read that a pepsinogen test may be helpful in diagnosing PA.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Blood tests linked to B12 deficiency
b12deficiency.info/b12-test...
"But although blood tests for B12 come back normal or sometimes over normal, I have the symptoms of low b12"
UK guidelines indicate that a person who is symptomatic for B12 deficiency should be treated even if serum (total) B12 is within normal range.
UK B12 documents
NHS article about B12 deficiency (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines (main points from above document)
pernicious-anaemia-society....
Above summary includes the statement
"in the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
The section on Signs and Symptoms in above link includes the note
"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12.
Above note may be a useful quote to include in any letter/communication with GP.
New NICE guidelines PA and B12 deficiency
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Local Guidelines
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.
If you want to know why I suggest getting hold of the B12 deficiency guidelines for your local area, have a look at this blog post.
b12deficiency.info/gloucest...
Unhappy with Treatment (UK info)?
I feel it's more effective to put queries about treatment/diagnosis into a letter as harder to ignore in my opinion.
Link about writing letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters brief, to the point and polite.
Keep copies of any letters sent or received.
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books/films, more B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Wow. Thankyou so much.Got bran fog at moment but will definitely check out as much as possible. Thanks again for your time and effort put into this message.
I also wondered if your folate levels had been checked recently.
Symptoms of folate deficiency overlap a lot with symptoms of B12 deficiency.
In a patient with both folate and B12 deficiency, vital that both deficiencies are treated.
B12 treatment would usually be started first.
Giving folate treatment without treating a co-existing B12 deficiency may lead to neurological problems.
See NICE CKS link B12 deficiency and Folate deficiency in my other reply.
Have your iron levels been checked recently?
Ferritin is often tested and there are other iron tests.
Iron Studies
labtestsonline.org.uk/tests...
Another common deficiency reported on this forum besides B12, folate and iron is Vitamin D.
May be worth getting that checked.
Thank you Sleepybunny. My iron levels and my Vitamin D levels are mid range. Wasn't tested for folate. Will look into that one. Thank you again. 😊
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