Hi I live in Spain.I have a few autoimmune conditions.
Lupus, Sjrogrens, vitiligo.
On my last rheumatology appointment he mentioned a positive intrinsic factor and said he had tested my B12 levels 2 years ago and it was ok.
I paid private for some blood tests and this was my results.
Vit B12 267 Pg/ml.
VCM 102.
I've been researching but am confused.
What other blood tests shall I get?
I do have a few symptoms.
Thank you.
I'm trying to translate but not getting on very well
As your doctor has mentioned positive Intrinsic Factor , it would indicate that you have another autoimmune condition , namely Pernicious Anaemia . You already have 3 autoimmune conditions , and I’m afraid that they often occur in groups . ( I have 3 - Pernicious Anaemia , rheumatoid arthritis and vitiligo . ) Even with a not terribly low B12 serum result of 267 pg/ml , you can have P.A. as inactive vitamin B12 , from which you cannot benefit, is counted into the serum result . An active B12 blood test is more accurate.
You mention a few symptoms , but you don’t say what they are . Do you mean P.A. symptoms ? You need to question your doctor about the “ positive Intrinsic Factor “ that he mentioned .
If you have P.A. , you need B12 injections . asap and for lifelong . This should not be delayed . Delayed or inadequate treatment can result in irreversible symptoms ( I know , it happened to me .)
The rest of your blood test causes no concerns .
Thank you for replying.My symptoms are tired all the time no energy, low mood, irritable, legs ache, poor sleep, loosing lots of hair. My thyroid results aren't good either at the moment so I'm wondering if that's causing an issue too.
I have an appointment for next week so hopefully can get some answers.
Aha! I was going to suggest thyroid, classic symptoms and seems to be a common accompaniment to PA and your other AI conditions. The thyroid Uk forum on here is very good. Post your results there and the group will help you out 👍
Thank you 😊
Hi,
I can see the VCM (volumen corpuscular medio) is above range.
I'm not medically trained or a scientist and don't speak Spanish but I think this is the same as MCV on Full Blood Count in UK but please check for yourself.
I think an MCV which is above range suggests the presence of red blood cells that are larger than normal (macrocytosis).
B12 deficiency and folate deficiency can lead to red blood cells that are larger than normal (macrocytosis).
Iron deficiency can lead to red blood cells that are smaller than normal (microcytosis).
A person who has B12 deficiency (and/or folate deficiency) with iron deficiency may appear to have normal sized red blood cells on Full Blood Count because the effects of iron deficiency can mask effects of B12 deficiency (and/or folate deficiency).
Link about Full Blood Count (FBC) - hopefully you can access this.
labtestsonline.org.uk/tests...
It's possible to have severe B12 deficiency symptoms with a serum b12 result that is well within range. Might be worth reading about "Functional b12 deficiency"
MMA, homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose this.
See blog post below (some info may be specific to UK)
b12info.com/your-serum-b12-...
Other links that might be useful.
Have you considered joining PAS (Pernicious Anaemia Society)?
They are based in UK but have members in other countries.
PAS membership is separate to membership of this forum. You do not need a PA diagnosis to join PAS.
pernicious-anaemia-society....
PAS have support groups in several countries and are keen to hear from anyone who wants to set up a new group.
pernicious-anaemia-society....
PAS website has useful leaflets, some info may be specific to UK.
pernicious-anaemia-society....
Other B12 websites
B12info.com
Run by a UK campaigner on B12 deficiency issues.
The B12 Society (UK charity)
B12d.org (UK charity)
Organises interesting online talks about B12 deficiency
B12 Awareness (US website)
Set up by Sally Pacholok, US campaigner on B12 deficiency issues.
Sally Pacholok has some online videos and articles about B12 deficiency.
Stichting B12 Tekort (Dutch B12 website with English articles)
stichtingb12tekort.nl/english/
Two B12 books I found useful.
Published a few years ago so some bits may need updating.
"What You Need to Know about Pernicious Anaemia and Vitamin B12 Deficiency"
by Martyn Hooper, founder of Pernicious Anaemia Society
"Could it be B12?"
by Sally Pacholok and J.J Stuart
The above book is available in Spanish.
Films and videos about PA and B12 deficiency
pernicious-anaemia-society....
Help for doctors
1) Pernicious Anaemia Society has a page for health professionals. Health professionals from across world can join PAS as healthcare affiliate members, no charge for them to join.
pernicious-anaemia-society....
2) Club B12 is a group of researchers and doctors across the world who are looking into B12.
They have regular zoom meetings and have hosted conferences.
3) Useful articles to pass to doctors
B. Wolffenbuttel is one of the few doctors in my personal opinion who seems to understand B12 deficiency.
He wrote this article for PAS.
pernicious-anaemia-society....
If you search online for "B12 deficiency Wolffenbuttel" you should find several articles he wrote, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).
I'm in UK and I know that some UK forum members resort to treating themselves, some get extra injections privately, some try high dose oral B12 but this does not work for some people (didn't for me) and some as a last resort turn to self injection (SI).
I believe it is possible to buy injectable B12 over the counter in some parts of Spain.
Many on here also report folate, iron and vitamin D deficiencies. Have you had recent tests for these?
In UK, B12 treatment would usually be started first in someone who had both B12 deficiency and folate deficiency.
It's quite common for forum members here to have thyroid issues. Thyroid UK forum on HU is a good place to ask questions about thyroid. It's a very active and supportive forum.
I hope you get the help you need.
If you have the time and energy, might be worth searching for local/regional or national guidelines on diagnosis and treatment of B12 deficiency in your country.
Sociedad Espanola de Hematologia y Hematerapia (SEHH) might publish guidelines.
Spanish Society of Haematology and Hemotherapy (SEHH)
Thank you
Thank you so much for replying.I have posted in the thyroid forum.
Yes it is the same as MCV large blood cells.
I did read about that.
Such a lot to take in at the moment.
I think I'll try to get folate , MMA and homocysteine done this week and see what the results are to try and get a clearer picture of what is going on.
I think we can buy vit B12 injections over the counter here so that's good.
My vit D was 53. I take a monthly tablet from the doctor.
But not sure about iron.
I'm originally from the UK and need to take a translator with me to the doctor.
Thank you 😊
Maybe you could ask your doctor to do a set of iron tests.
Link about iron tests - I hope you can access this.
labtestsonline.org.uk/tests...
Articles about MMA
labtestsonline.org.uk/tests...
stichtingb12tekort.nl/english/
Homocysteine
labtestsonline.org.uk/tests...
Can you get an Active B12 test (also known as holotranscobalamin)?
B12 in the blood (serum) can be in an active form or inactive form.
The body cannot use the inactive form of B12.
A person can have normal range serum B12 but if a lot of it is in the inactive form the person can develop B12 deficiency symptoms.
Search online for "functional B12 deficiency" for more info.
Thank you I will look into it.
folate, (metabolism of b12 relies on folate)
thyroid,
Iron (see breakdown below),,
vit D,
b6,
Organ function tests: see “TESTS RELATED TO BODILY HEALTH AND ORGAN FUNCTION” section in this link testing.com/anemia-testing/ - organ function tests listed in the doc above are key: kidney, liver and
Electrolytes:
Magnesium
Potassium
Sodium
Zinc
Copper ANEMIA: testing.com/anemia-testing/ Intrinsic factor antibody
MMA and homocysteine
——————————————————————
DETAILS ABOUT IRON TESTING
These thing must be tested to properly test iron deficiency.
Iron TIBC/Transferrin UIBC % Transferrin Saturation Ferritin
Read section on “Interpreting the results” testing.com/tests/iron/
——————————————————————
Details about B12 if there is a folate deficiency, then there will be likely a b12 deficiency and this folate deficiency is then the cause as folate is required for b12 metabolism
Testing b12
Serum b12
Folate
The test for PA as a specific cause of B12 deficiency is IFAB (intrinsic factor antibody) but it isn't very sensitive so gives a false negative 60-40% of the time depending on the exact test methodology.
A test that is starting to be done instead is gastrin - a protein that controls release of stomach acidity and has been found to be extremely elevated in patients who have PA.
---- also ----- B12 is obtained only from eating meats. Thus vegetarians commonly end up with b12 deficiency as a result. It takes 4 years to deplete the stores of b12 in the body (presumably in the liver), thus the decline of levels is gradual and symptoms escalate very subtly over time, leading commonly missed diagnosis. it takes a long time, as in 4 years, for extremely severe symptoms to appear. Beyond vegetarian diet, and medications that deplete b12 like metformin, there are those that may not be able to metabolize b12 orally to any degree. Not much can be done to determine the cause as the b12 metabolism is too complex and tests don’t exist beyond basic stomach acid test. I have been searching for the genetic tests, but I have too many to count and they are likely to be more expensive without much gain.
Once severely depleted, no matter the cause, it will take 1-2 years of injections to get back to normal. b12 is responsible for cell generation. The cells in our body die and regenerate every 120 days. Thus without b12, our nerve, brain and other cells die but don’t regenerate. The result is neurological symptoms: severe fatigue, brain fog, back pain, numbness in the extremities, loss of appetite. firstly, 98% of doctors do not understand b12 deficiency, Thus other than the initial b12 serum test. Do not rely on doctors at all for advice or guidance to the solution. If they find the level low and suggest a b12 injection, take it. If they want you to get a series of injections, ask them if the nurse can show you how to self inject as this will save a lot of money and time having to make multiple visits. It’s plenty safe to do if trained by a nurse. (I MEAN DIABETICS DO THIS MULTIPLE TIMES A DAY!) - they don’t know what causes it beyond diets without meat. - they think b12 can be tested after injections despite the medical journals the clearly state it can’t be. serum b12 levels must be checked before any b12 injection as an injection ends up in the blood stream and then serum b12 levels will remain high for a long time. It takes 3-4 months minimum without injections before the serum levels will be accurate. Thus it’s best to test b12 before injecting. Additionally, it is vital that kidney and liver function tests are done before injections as b12 can be toxic in this case AND ONLY IN THIS CASE which is if you have an already bad liver or kidney. Otherwise, if you have a healthy kidneys and a healthy liver, no amount of b12 will EVER be toxic or result in kidney or liver failure!!!!! So if b12 is tested and you end up low: read this document it’s priceless. Otherwise, no need to read it. pmc.ncbi.nlm.nih.gov/articl...
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