Active b12 versus serum b12

[Eton]

My Medichecks active b12 is 63.1 (range is 37.5-188) but my serum b12 tested at my gp surgery shows top of range. Should I supplement? I also have hypothyroidism.

Thank you

[wedgewood]

Your blood serum B12 can contain up to 80% of inactive B12 . Do you have any symptoms of B12 deficiency ? You haven’t described any .

Is your thyroid problem autoimmune? If so your B12,deficiency may also be autoimmune i.e.Pernicious Anaemia., as autoimmune conditions seldom come alone .

Symptoms are important when diagnosing .. What are yours ?

[Eton in reply to wedgewood]

Wedgewood thank you for replying. My main symptoms are extreme tiredness, dry skin, nausea, reflux despite a bland diet, low pulse, cold hands , legs and feet and low energy. It is hard to know if these symptoms relate to thyroid or B12.

My antibiotics have been over range in the past but not always.

[wedgewood in reply to Eton]

Those symptoms can overlap with other conditions . You could try supplementing with B12 , perhaps the sub-lingual B12 . ( Amazon) B12 is the one vitamin that you cannot over-dose on , which is good to know . Perhaps your thyroid medication needs adjustment. ……. Extreme tiredness is the most common symptom of B12 deficiency . Pins and needles in extremities. Breathlessness . anxiety , You can look up all the symptoms , but you get just a few , not all !!!

[Eton in reply to wedgewood]

Thank you for your reply and advice. Much appreciated.

[Wheat]

hello eton, 63.1 active b12 is in range for medichecks. However, the thyroid forum quotes 70 as being minimum. My active B12 tested recently was 150. I believe your B12 is low.

Hypothyroidism sufferers frequently have low to no stomach acid which can cause malabsorption of vitamins and minerals, including B12 and folate.

Gps only know of high stomach acid as the cause of reflux. However, reflux is often caused by low stomach acid. Any antacids, ppi, hc2 further lower stomach acid. Avoiding dairy has stopped reflux for me. I take apple cider vinegar with mother to digest food.

x

[Eton in reply to Wheat]

Thank you Wheat. I don’t think I could tolerate cider vinegar as I have gastritis.

[Jo5454 in reply to Eton]

When St Thomas did my Active b12 I was told if its between 25-70 it's referred for MMA testing,so they obviously believe its possible to have a b12 def within that range. It seems thyroid is linked to so many of these deficiencies its hard to know whats what isn't it. Keeping them in optimal range is the advice on here.Have you had homocysteine tested and does your full blood count point to any clues such as raised mcv or mch? What's your iron/ferritin/folate/ vitamin d?

[Eton in reply to Jo5454]

Hi Jo,

My homocysteine was 11.39 (5-15 being normal range). That test was last year.

My recent blood test showed MCV =92.1 (83-101) and MCH =30.7 (27-32).

Iron =15 (10-30): ferritin=105 (13-300):transferrin saturation =24.5 (20-55%): serum transferrin =2.45 (2-3.60). Don’t really understand these.

Vit D usuall close to 100 as I supplement 2000iu daily.

Yes I agree that it’s difficult to tease out what causes symptoms.

Thank you for taking time to reply.

[Jo5454 in reply to Eton]

Hi Eton, I’ve had homocysteine recently and was told it’s too high at 11 and to aim to get it under 7? Know it can be an indicator of needing more b12 as well as zinc, b6 and folate, so it’s not specific just to b12, but helpful to know and get into range.

I’m no expert, but your mcv/mch atent overage are they, which is another indicator of needing b12. If the saturation and transferrin are out of range they can tell you it’s safe to take iron, but they all look like they’re behaving don’t they.

As I said, mma was tested for active b12 between 25-70, you could try to request that test, but I know from experience it’s not readily done by many! Again, if it comes back in range it doesn’t mean you haven’t still got b12 issues, but if it comes back over age does show it’s likely the case. It’s not a cheap test to do privately, I’ve done the urine type too. Have recently found out mma can also be raised by SIBO or thyroid, but unsure as to the reasons why, oh it’s a bit of a minefield isn’t it!

Have you retested your antibodies since feeling worse, could it be a flare up and that’s affecting your b12 levels? Take care…

[Eton in reply to Jo5454]

Hi Jojo thanks for your reply. That’s interesting that you were told 11 was too high for homocysteine level. I had mine measured with cerascreen and it was suggested 11 fell within the normal range. What steps are you taking to try and reduce your numbers?

Where did you have MMA test done? I really don’t think that my GP would support me in this so I would have to have it done privately.

Best wishes

[Jo5454 in reply to Eton]

Hi EtonThe 1st time I tested homocysteine few yrs bk was Yorktest,who no.longer do, it was 11 and they said over 10was at risk.

This time it was through Food for the Brain & they said over 10 means needs lowering. Not to alarm either way. I believe it could be much higher and below 7 seems to be an ideal to aim for?

Must admit altho I took more b6,folic acid, zinc,was on b12 inj I assumed it had improved rather than rechecking as York test stopped theirs and it was hard to source plus I'd spent so much already on testing!

Redid it recently when I came across this place, so will supplement again,only this time I will retest after so long. I'm going to add in a b complex as that seems best advice to.follow, rather than just the individual ones.

I'm going to contact Dr Harrington who helped me through St Thomas i.e. mma test. That was stopped due to covid but on last asking him he said they'd hoped to create an easier hometest way rather than having to get blood drawed, will get bk to you on that,may take a little while to hear.

If memory serves me the last urine mma test I did was via regennerus,but will double check that too...

[Eton in reply to Jo5454]

Many thanks Jo. That would be great if you can let me know what Dr Harrington says. I think I will also begin a B complex although I know it will probably cause stomach upset as I am very sensitive to supplements.

Best wishes

[Jo5454 in reply to Eton]

If you’re thinking of doing any testing, I’d do that before starting a b complex if it contains b12…

[Jo5454 in reply to Eton]

Hi, I contacted him early yday, so will let u know when I hear…

[Eton in reply to Jo5454]

Thank you

[Jo5454 in reply to Eton]

Hi Eton was going to contact you abt finding the Neovos mma test,but see you've found that post. Will get bk to you abt other soon as I hear

[Eton in reply to Jo5454]

Many thanks Jo.

[Jo5454 in reply to Eton]

Hi Eton...Dr has responded, the Mma test via St Thomas is not yet available again yet as a postal test. Am sure it will be,just don't know when. I'm completing mine early nxt wk & will let u know how I get on with Neovos...take care

[Eton in reply to Jo5454]

Many thanks for the update Jo. Take care.

[Mixteca in reply to Eton]

It's not so noticeable if you add it to a nice French dressing on a mixed salad and plenty of virgin olive oil. I took mine that way and I don't like vinegar.

[Jo5454 in reply to Wheat]

Hi wheat, you mentioned stomachs acid is lower in hypothyroid,do you know if this would affect SiGa levels too please? I always seem to be low on those and trouble with keeping b12,ferritin,vit d,folate high enough.Not on thyroid meds but tsh up and down for yrs...thanks

Think I'll.investigate more...not sure if the low SiGa is causing the other issues so if it could be possible to raise, then these other things could be improved...or whether our autoimmune issues are causing the low SiGa...chicken or the egg scenario and guess trying to raise them and attempt improving gut absorption may give some answers?

[Wheat in reply to Jo5454]

hello Jo5454, I have very little knowledge of SIGa, apart from being an antibody concerned with intestines. Perhaps the Thyroid forum here would know.

I have thyroid antibodies off the scale high so following the 'diet' ie exclusions they recommend.

Its so difficult to manage conditions, seems we are continually investigating something. Best wishes, x

[Jo5454 in reply to Wheat]

Thank you wheat, yes maybe someone else will shed further light on SiGa :)Do you follow a gluten/dairy free diet? I developed & tested for a milk intolerance after catching a sickness bug going around a school I worked in, and have been trialling gluten free for years, tho.unsure if it correlates as I had better health at times whilst eating it and worse at times when I haven't! I did test for borderline gliadin (i think thats what it was) issues so been gluten free since.

Yes,always something to try to sort,I'm notvsure I ever feel I've quite got to the bottom of it yet I've had a diagnosis of ME for 25 years, tho since finding out about b12 & other issues wondering if it's more a case of lot of things adding up so on yet another quest to improve as many as can,before the menopause gets the entire blame Thank you.. take care x

[Wheat in reply to Jo5454]

Yes, my celiac test was borderline. All I know is my stomach complains ( gastritis mainly ) with gluten or dairy so I avoid. Now excluding soy and trying to exclude sugar, but its in most savoury food which annoys me, a lot.

With, M.E. ,Hashimotos, B12D/PA, etc. ... it can be difficult. Well, keeps me busy 🙂. X

[Jo5454 in reply to Wheat]

Yes, it certainly does keep us more than entertained doesn’t it Sorry you have so many issues going on too. Yes been down the sugar exclusion route when I had very high candida in blood after years of being given antibiotics because they didn’t know what else to try I guess! Yes, very frustrating it’s in so much, but due to a type 1 latex allergy was told by consultant I’d have to make most foods from scratch & not eat out of packets agn due to glues and don’t get me started on getting info from food companies about whether their products come into contact with latex along the line! At least latex gloves are less of an issue these days,

Mind you, sugar wise, think it was better when a little of that was added instead of sweeteners! But no, doesn’t make sense in savoury does it! It surely can’t be helping teeth and related diseases can it! It’s become the norm for many to eat so much of it now hasnt it…x

[Nackapan]

Its s matter of ruling things out and going by your symptoms. Then having further tests.

I wouldn't supplement until further tests like IFAB iron ,ferritin vit D

[Eton in reply to Nackapan]

Hi Nackapan see my reply to Jojo above for recent blood test results. What is IFAB iron please.?

[Nackapan in reply to Eton]

IFAB =Intrinsic factor antibody test If positive yoh have PA ,Pernicious anemia

It s the only test used.

It picks up around 50% of those with PA

So if negative it doesn't rule out PA.

When I was very ill.

My bloods only showed low b12,low vit D, low ferritin .also high Inflamatory markers.

I was still very ill when bloods showed nothing .

Nerve damage.

Vestibular disturbance ,migrains ect.

Mri s give more information as do endoscopy's depending on your symptoms .

I take supplements to try snd stay in range.

Struggle with vit D and

Ferritin both just in range.

Despite a good diet as well.

There are many many absorbtion problems, medics do not yet understand.

Symptoms are the same.

Most of us it's s matter of maintenance and management of symptoms rather thsn a cure .

If the cause is dietary there is a cure .

By medication if that can be stopped can be cured.

Ongoing other health problems like surgery or chrohns back to management .

It's s minefield .

Also once your body needs B12 injections and high levels to reach cell level this rarely changes.

As bypasses any insufficient workings/ absorbtiin as I understand it.

Best to concentrate on symptoms.

Alien yo me initially as searching for a cause as is human nature .

That's what I mean by rulingogher things out .

To date nothing else found for me to date.

Was on no medications ect.

I'm on regular b12 injections to keep me as well as possible and still making improvements .

Nothing else apart ftom vit D

Multivit and low dose iron.

[Chickens44]

I did a Medichecks active B12 test and it came back 48.3, so lower than yours, but GP still said it was nothing to worry about as in range! Am seeing a specialist in a couple of weeks - someone who actually knows what he’s talking about!

[Eton in reply to Chickens44]

Hi Chuckens44 I hope you have a successful consultation with the specialist. Good luck.

[Jo5454 in reply to Chickens44]

Good luck with your specialist,please let us know how you get on Chickens44. If St Thomas nhs hosp were sending active b12 samples between 25-70, for MMA that means something doesn't it. Why ate some of these gps so unwilling to learn!

[Chickens44 in reply to Jo5454]

I have just been watching a clip on YouTube done by one of the iron specialists and he says that B12 and associated deficiencies are not covered in medical school these days and have not been for over 10 years, so it’s not surprising the newer GPs have no understanding. 🫤

[Jo5454 in reply to Chickens44]

A few gps at my surgery have admitted they don't know much about b12. I've also experienced older GPS who have thought ferritin at 15 is more than adequate,even when I've been experiencing obvious symptoms. Appreciate there's limited time, but just someone to read through the recent guidelines in each surgery and listen to the patients would be a start. Many of us have had to source private help and acceptance of their opinions would be good...its got to.improve hasn't it.