B12 issues

Please could I have some thoughts on my BH test results. I did the second test as recommended by BH.

4 May 2016 ...................18 July 2016 ........ Range

B12 ..... 314 pmol/L ..... 390 ........... Def <140, Insuff 140 - 250, Consider reducing >725

Serum Folate .. 21.38 ..... 35.29 ....... 10.4 - 42.4 nmol/L

CRP ..... 2.50 ................... 1.00 ................. <5.0 mg/L

Ferritin .. 142.8 ................ 91.2 .............. 20 - 150 ug/L

TSH .. 4.84 H .................... 3.73 ............. 0.27 - 4.20 IU/L

T4 Total .... 95.7 .............. 74.0 ............. 64.5 - 142.0 nmol/L

Free T4 ... 14.03 ............. 12.98 .......... 12 - 22 pmol/L

Free T3 .... 4.50 .............. 4.37 .......... 3.1 - 6.8 pmol/L

Anti- Thyroidperoxidase abs ... 10.2 .... 7.8 .......<34 klU/L

Anti-Thyroglobulin Abs ... <10.000 ..... 10.6 ....... <115 kU/L

Vitamin D .... 78 ........ 105 ........... Def <25. Insuff. 25 - 50, Consider reducing >175

Following the first results I started taking as from 16 May 2016:

Jarrow Formulas Methyl Folate - 400 mcg - 1 a day

switched to Solgar Folate (as Metafolin) 800 mcg on 20 June 2016 - 1 a day

Jarrow Methylcobalamin B12 - 1000mcg - 1 a day, upped dose to 3 day 1 July 2016

Vitamin K2 MK-7 100 - 100 mcg - 1 a day

Was already taking:

B Complex

D3 - 300 iu

Acidophilus Complete - 400 mcg, 10 billion cfu per capsule - 2 capsules a day

Vitabiotics Ultra cod liver oil plus omega 3 - 50:50 ratio - 2 capsules a day

CoEnzyme Q-10 - 30 mg - 3 a day

But I didn't take any supplements at all for the 10 days prior to second test, as I was away from home.

I am struggling with brain fog, struggling to remember words/form sentences, knee giving way, tinnitus, pins and needles, unsteady on feet, vertigo.

It looks like I have managed to raise my Vitamin D and Folate levels, but my B12 has not really moved. I am seeing my GP again later and wonder if I should ask for injections ?

20 Replies

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  • Thanks. My Vitamin level is 105 though, so this is where it should be, isn't it ?

    Blood sugars are good. Not diabetic or pre-diabetic.

  • I wouldn't take calcium with vitamin D. Your current Vit D level is good. Taking vitamin D raises your absorption of calcium from food which is not a problem if you also take vitamin K2 and magnesium with it. Taking extra calcium is not good for you unless you are deficient.

    articles.mercola.com/sites/...

    articles.mercola.com/sites/...

  • I think your blood levels are fine, before and after supplements. D and iron are perfect IMHO. As this is a PA (and B12def) forum: the problem is that you were taking a B-complex before testing, and that might have given a higher B12 but does not rule out a B12def/PA. How long for and how high dosed is that one? Did you get your B6 tested?

  • I have taken the B complex on and off, so not sure if I had been taking it prior to the first test. I def. had not taken it for 10 days prior to second test. Was not aware I could get a B6 test.

  • I was asking cause it could have made the B12 level higher but without really doing something. Now that you've been on sublinguals it would take a long time to get an accurate bloodtest again on B12 so might be best to keep taking them. Although another better one (for you better) would be good, as this one is apparently not doing much. B6 I was asking because too much can give neuro symptoms as well.

  • Vrtthy - your B12 is still very low. Anything under 500 can result in neurological symptoms. PAS recommends levels of 1000+. Your D level is OK and you're taking K2 to redirect the calcium but I would recommend increasing the B12 to 5000mcg per day. Your ferritin has dropped between the two tests - B12 needs ferritin approximately halfway through the range to be used together with good folate levels (which you have currently). I'd suggest something like Spatone to make sure your iron levels stay up while you're supplementing high levels of B12.

    If you're planning on going to your GP to ask for injections, it's possible you may find yourself with a battle on your hands as most will see the B12 levels you have as "in range" and will probably tell you that you're fine.

    You may find the PAS website helpful pernicious-anaemia-society.... - I'm sure others will be along shortly with more comprehensive advice.

  • Thanks. I do think it is unlikely GP will agree to injections, but will show her the health docs (bnf, etc) from the lists on here and see what she says.

    If she won't agree to injections I will start on 5000 tablets. I have some Gentle Iron, so I will start taking that along with the Vitamin C.

  • Your symptom checklist does sound like a good fit for B12 deficiency. Your B12 levels before supplementation were well into the 'normal' range and haven't changed much on the later test.

    It is possible to have what's called a 'functional' B12 deficiency - where there's plenty floating around in the blood, but it's not getting to where it needs to be. One way of checking for that is to have a methylmalonic acid (MMA) test.

    This is a chemical used up in one of the processes mediated by B12. If, for whatever reason, the B12 isn't doing a proper job then the levels of MMA will rise.

    You could try asking your doctor for the test to be carried out, saying that you'll stop talking about B12 if the level is low - and that they'll treat you with B12 if it's high.

    Soe people have had it done privately.

  • This is what I had been wondering about, but sort of dismissed it as I had managed to get my D levels up via tablets so assumed that it was not an absorption problem. But it could be because my body cannot access the available B12 which is a different issue ?

  • B12 is absorbed by a different method to the way most stuff gets into the body from inside the gut. Small molecules can normally pass through by simple diffusion as long as they're in solution.

    But Vitamin B12 is water soluble (which makes it hard to get through cell walls) and it's pretty large. So it needs an escort to get across the gut wall. This escort is a protein called Intrinsic Factor (IF). It is produced in the stomach by Gastric Parietal Cells (GPCs). In the small intestine it picks up B12 molecules released from food and carries them across the gut wall and into the bloodstream.

    Some people have an autoimmune problem that attacks GPCs and/or IF. That means that B12 cannot be transported out of the gut. This autoimmune problem is what we call Pernicious Anaemia and is a major cause of B12 deficiencies, especially in the Western World.

  • Thanks for this. I have had the IF test and given how unreliable the test it it was negative. Will dig out the actual result and post it later. I will try your earlier suggestion and ask for the MMA test.

  • The MMA is a bit pointless now after all the sublinguals, unfortunately. Try asking your GP for injections, and tell him how much B12 you were taking and that it's not raising bloodlevels, so you want to try injections.

  • So no surprise no injections. My level are too good for it to be a B12 issue. It would be illegal to give me injections based on my levels. Too much is not good. So the same old usual excuses, no surprise really. So I will get some 5000 tablets and try those for a while. If I get no better with them I will order online and try self injecting and see if that helps any.

  • Maybe give that doc some info that there is no 'too much' and how unreliable the B12 test is. How did he respond when you said you were taking high dose B12 for a while and it doesn't do anything, even with bloodlevels?

    Maybe try a different brand of tablets, and a different form. For some hydroxo works really well.

  • She just was not interested. In her opinion it cannot be a B12 problem as my numbers are very good. Had my level been 20 she would accept that there was possibly a problem. I will look at trying a different formula. Thanks.

  • Hi,

    Recent UK documents make it clear that people who are symptomatic for B12 deficiency should be treated even if B12 blood levels are normal range, in order to prevent neurological damage.

    1) Google "BCSH Cobalamin and Folate Guidelines". Page 29 is a diagnosis flowchart that shows the recommended process a medic should go through when they suspect someone has B12 deficiency. Page 8 shows details of recommended Uk B12 treatment. I gave a copy of the BCSH Cobalamin Guidelines to my GPs.

    2)http://www.bmj.com/content/349/bmj.g5226

    See 5th point in summary

    3) UK NEQAS B12 Alert

    fbirder has a summary of mainly UK documents that may be helpful.

    Symptoms

    pernicious-anaemia-society....

    Click on Symptoms Checklist. I ticked all my symptoms and gave a copy to my GPs.

    b12deficiency.info/signs-an...

    UK B12 websites

    PAS

    pernicious-anaemia-society....

    PAS tel no 01656 769 717

    martynhooper.com/

    b12deficiency.info/

    b12d.org

    B12 books

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. This book is up to date with current UK guidelines.

    "Could it Be b12" by Sally Pacholok and JJ. Stuart. Very comprehensive book about B12 deficiency.

    Link about writing to GP

    b12deficiency.info/b12-writ...

    Blood tests

    b12deficiency.info/b12-test...

    active-b12.com/frequently-a...

    Have you has a Full Blood Count blood test recently? There may be useful clues on a FBC. Sometimes people with b12 deficiency can show signs of macrocytosis (enlarged red blood cells). High MCV and high MCH on the FBC may indicate the possibility of macrocytosis.

    patient.info/doctor/macrocy...

    labtestsonline.org.uk/under...

    patient.info/doctor/pernici...

  • I am not a medic just a person who has struggled to get a diagnosis.

    Working link to BMJ article. see 5th summary point.

    bmj.com/content/349/bmj.g5226

  • Thanks. I had prepped with all this before I went, but when I tried to point this out to her, but she simply was not interested. It CANNOT be a B12 is her official diagnosis. No idea what it could be though, and no idea who to refer me to. So I need to follow my own path.

  • In the past, I have sometimes written letters to GP before an appt. As far as I know copies of patients' letters have to be filed in medical records so are a record of issues being raised. I also keep copies of any letters I write.

    I found fbirder 's document summary very useful as it has quotes from various documents that help to refute some of the common unhelpful statements some medics make about B12 deficiency. If you click on the link to fbirder's profile page above you shoudl find a link to the summary.

    Some GPs may be uncomfortable with a patient who asks questions or challenges their thinking, and writing a letter to GPs may be easier for them to deal with than asking lots of questions face to face.

    b12deficiency.info/b12-writ...

    "I have had the IF test and given how unreliable the test it it was negative"

    page 29 in BCSH Cobalamin guidelines mentions Antibody Negative PA.

  • Your thyroid isn't up to scratch. At least some of your symptoms could well be due to low thyroid hormones.

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