Could these results indicate a need for PA to be tested?
My b12 has always been high for years and I don’t know if this could be a false high in that I take a b complex but I don’t absorb.
My stomach acid was zilch - I am now taken hcl.
My symptoms are severe low energy, daily headaches for years, pulsatile timnitus, h r heart rate, awful low mood swings/depression, anxiety - uneasiness in body, had light heads on standing last year, low appetite, nausea on and off since 2021.
I have not been diagnosed as I had my bloods taken privately through M cks.
I have recently been diagnosed hypothyroid- low antibodies so hopefully not Hashimoto.
These were last August 24 and I didn’t pay much attention until now. I looked back to when I first had tests taken from 2022 and they were also raised at that time.
I have been supplementing with b complex daily since 22 mainly as my folate was really low and knew b vitamins help nervous system/menopause.
I have in the past had low iron but that has improved since working on gut.
All my other vitamins are ok.
Thank you
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FoxyTed
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I left some detailed replies in these threads below eg symptoms lists, causes, risk factors, links to help those in UK struggling to get treatment, B12 books etc.
Some info will be specific to UK.
Might be worth reading the info over a couple of weeks so it's not so overwhelming.
Some links may have details that could be upsetting to read so might be worth having a supportive friend or family member to read through it with you.
Many on here also report folate, iron and Vitamin D deficiencies as well as B12.
What's your folate level like?
Both low folate and low B12 can lead to red blood cells that are larger than normal (macrocytosis).
Low iron 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 (FBC) as effects of iron deficiency could mask effects of B12 (and/or folate) deficiency
If you have time, maybe look into macrocytosis.
I'm not medically trained but your blood tests results suggest the possibility of macrocytosis to me.
Link about Full Blood Count (aka Complete Blood Count)
Hypothyroidism affects MCV (mean corpuscular volume) and MCH (mean corpuscular hemoglobin) because thyroid hormone plays a crucial role in the production and maturation of red blood cells, so when thyroid hormone levels are low in hypothyroidism, it can lead to larger, less efficient red blood cells, resulting in an elevated MCV and MCH on a blood test; essentially, the red blood cells are not dividing and maturing properly due to the lack of thyroid hormone stimulation.
Key points about how hypothyroidism impacts MCV and MCH:
Erythropoietin regulation:
Thyroid hormone stimulates the production of erythropoietin, a hormone vital for red blood cell formation; with low thyroid hormone levels, erythropoietin production is reduced, impacting red blood cell production.
Bone marrow function:
Thyroid hormone directly affects the bone marrow, the site of red blood cell production, leading to slower cell division and larger red blood cells when thyroid hormone is deficient.
Macrocytic anemia:
A common finding in hypothyroidism is a macrocytic anemia, meaning larger than normal red blood cells, which is reflected by an elevated MCV on a blood test.
Something else to be aware of! Almost half the population cannot methylate folic acid yet it’s fortified in out foods and prescribed.
NHS is aware as they say for low folate check b12 first
Before you start taking folic acid, your GP will check your vitamin B12 levels to make sure they're normal.
This is because folic acid treatment can sometimes improve your symptoms so much that it masks an underlying vitamin B12 deficiency.
If a vitamin B12 deficiency is not detected and treated, it could affect your nervous system.
Talks about links to autism and increased prostate cancers……think this needs to be explored as a topic……..your thoughts Sleepy Bunny?
1) why anyone would prescribe folic acid without checking b12 status?
2) why is no one talking about this? Our foods are fortified with it, theres an increase in the ultra processed foods which contain folic acid, women take folic acid for fertility if trying for baby or pregnant, it’s prescribed for low folate and those taking methotrexate without knowing info below!
1. MTHFR testing has exploded globally.. The positive finding is triggering a flurry of L-5-MTHF supplementation or prescriptive medication. This is the inappropriate response. MTHFR variants have been present for countless generations.
2. increase in cardiovascular diseases, congenital birth defects, infertility, recurrent miscarriages are NOT a result of the MTHFR variant.
It is a result of the environmental impact on MTHFR expression.
- MTHFR is unable to handle the current present-day load.
- A big factor weighing down MTHFR: Folic acid
3. Rats have a high ability to convert folic acid into a more bioavailable form of folate – dihydrofolate.
We are not using folic acid in rats. We are using it in humans. Only 200 mcg of folic acid can move through a human enzyme called DHFR.
4 Unmetabolized Folic Acid: It’s Harmful. Amongst other things it masks B12 deficiency
Serum folate consists of unmetabolized folic acid, dihydrofolate, tetrahydrofolate, folinic acid, L-5-MTHF. This is not clinically useful information except only in the case of frank folate deficiency when serum folate is low.
Measuring ‘UMFA’ which is unmetabolized folic acid. Issue is labs do not measure this. They used to but stopped due to lack of demand. We need it back.
5. If cerebral folate deficiency is identified, prescribing folic acid to treat it is . . . Yes contraindicated.
6. The FDA is working on fortifying corn flour now with folic acid.. This is not the solution.
7. Without the presence of folic acid, natural folates may:
Bind to folate transport proteins freely
Bind to folate receptors freely
Help synthesize biopterin
Not mask a vitamin B12 deficiency
Enhance cellular folate levels
Why are we using folic acid at all?
Couldn’t we all be struggling with some level of cerebral folate deficiency?
Folate: It’s what we need
Folic acid served its purpose.
Watch the video below as it also mentions dangers of giving folic acid when B12 deficiency is NOT first checked.
Understanding the complexities and central role of B12 in health and life - Dr David Morris
How much B12 is in your B complex vitamin? People with PA who take supplements are often taking 1000mcg per day. The multi-vitamin I sometimes take only has 2.4mcg. High B12 when someone is injecting B12 or taking a lot is not a concern. But if you only take a little, then it might be worthwhile to stop for a bit and see if it is still high. High B12 can indicate some serious health issues. On the other hand, the high MCV/MCH could indicate problems absorbing B12. If that is your problem, maybe every other day B12 injections would help you to feel better. In either case, I hope your doctor looks into it. One problem with testing for PA is that the test has a high false negative rate. But if you do it and get positive, at least you will know you have PA. Here are some issues people have when they have high B12: pubmed.ncbi.nlm.nih.gov/146...
Scientist, not medic. I can only comment on results, not offer medical advice but here goes!
You have a borderline macrocytosis [big red cells]. That's connected to a raised MCH; they go together. Your MCHC is borderline low. So, if your sample has been standing around before testing, the red cells can begin to swell a little, artefactually. This will result in your MCHC being lower. The technical bit:
RBC are counted very precisely, so the count by any automated method is very repeatable.
The MCV is measured directly, but depending on the analyser type, the MCV may be more susceptible to swelling and slight over-estimation on standing.
Hb is measured directly.
Then the magic happens. MCH = Hb/RBC, so if it's raised it's correct.
MCHC =Hb/(RBCxMCV). If the MCV is falsely elevated, then the MCHC is biased down.
Blood, unlike good red wine, does not improve on storage! Once it's in the tube it needs testing without further delay. Some analyses can stand a bit of waiting around, and some certainly can't. When you tell us that you had your tests done privately, we don't know if that's a postal service, or a 'walk in' but delays for an FBC can reduce the value of some of the numbers.
Macrocytosis is usually associated with a lack of either B12 or folate, and replacement of the missing bit results in correction of the macrocytosis. As re cells are in the circulation for around 100-110 days then you only replace 1% per day, so the rate of change is slow. It takes 4 months to get rid of the old red cells.
Microcytosis is usually associated with a lack of iron, and the same rule applies. Replace Iron, MCV rises, but slowly.
One thing we often overlook is that in hypothyroidism, the MCV can be raised a little too. That, once again, is corrected on replacement.
If you are maintaining your Haemoglobin level over time, then the problem is not massive, and it will take longer for you to see the changes. If you're anaemic when the treatment starts, then you would generally see the numbers change more quickly.
Thyroid's a complicated little beast. It sounds like you're in good hands. Be careful about fiddling around with doses without very good medical input. Too much is probably worse than not enough, but the thyroid forum's the place for that.
Your mean corpuscular volume is over range and this is an indicator for PA. As has been said, your B12 will be high if you supplement but it may not be getting to the cellular level. With zilch stomach acid you cannot assimilate B12. Testing for B12D/PA is a vexed subject. The IFAB test is reckoned to be only 50% reliable. Go by symptoms as indicated in the 2024 NICE guidelines.
Oh no, not this again! The IFAb test is very reliable; it just doesn't detect every case of 'PA' because not everyone presents with detectable Intrinsic Factor 'antibodies'. The tests we use for IFAb aren't classical antibody tests; they detect the presence of an 'antibody-like' effect present in the serum. There's no reason to believe that everyone with 'PA' actually will have demonstrable IFAb. A 'real' test for B12 absorption, the Schilling Tests, got round this by measuring the proportion of B12 absorbed [and thus excreted in the urine] by using radio-labelled B12, and the DiCoPac Schilling test detected those who could absorb with IF, but not without it. Unfortunately, those days are gone, as the test is no longer manufactured for a variety of reasons. Even so, Schilling tests weren't perfect as they were open to misuse. I could go on, but not today!
This is a commonly reported situation on this site. My test, as I said, was negative but my B12 level was in the basement. That is why my GP disregarded the test as a definitive test and treated me for PA.
Give the GP a gold star, for 'treating the patient, not the results'. That's someone who recognises that when the test is positive, it's pretty well definitive, but when it's negative it doesn't exclude anything. It's not that the test doesn't work very well, it's the patients who don't! [joke].
When we had Schilling Tests, we still did IFAb tests as well. The IFAb test cost a matter of a few pounds, whereas the Schilling Tests cost a small fortune. It wasn't the cost that stopped us from using it; it was the manufacturer stopping making the stuff. Plus we could do hundreds of IFAb, but only one or two Schillings a week were as far as we could go.
It's easy to assume that these are rarities, but I suspect not. We just tend to hear of the ones who get it wrong. But yours clearly is a good one. She's a 'keeper'!
"With zilch stomach acid you cannot assimilate B12."
This is only true if your only source of B12 is the kind of B12 that is attached to animal proteins.
Unless there are problems with intrinsic factor (which is the case in PA), free B12 from supplements or fortified foods can be absorbed regardless of stomach acid.
Free B12 first attaches to Transcobalamin 1 (TC1) (a haptocorrin) and the B12 is then seperated from TC1 in the duodenum by pancreatic digestive enzymes. It then attaches to intrinsic factor and is later absorbed in the ileum.
Worth having your blood glucose levels checked as symptoms are very similar to B12D - HbA1C in the blood gives average glucose levels for the last 3 months.
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Elevated mch and mchc
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