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Just got Active B12 result back and surprised. Advice please.

lucylocks profile image
17 Replies

Hi

Just rang G.P. for result for my Active B12 test I sent to St. Thomas

Receptionist said it is 107 range 25 to 108 so I am right at the top of the range.

I don't really understand this as my serum level was 377 range 180 - 1100

I had been supplementing but stopped 2 months previous to the test.

Since I have stopped supplementing I have felt more tired and out of sorts

Can anyone shed any light on this please

Many thanks browny

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lucylocks
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17 Replies
ashleyd profile image
ashleyd

I think your doctor asked for active b12 because that's the one that counts the way I understand it is serum b12 test will tell you all the b12 in your blood but you have inactive b12 which doesn't do anything and your active b12 that's the real one that matters and the one that counts not sure thought it was in the book written by martyn Hooper pernicious anemia the forgotten disease. I gave the book to my Gp to read so can't look it up for sure but go to the Web Site or try b12d.org it may clarify it a bit more.

lucylocks profile image
lucylocks in reply toashleyd

Thank for your reply, yes you are right the active one is the one that matters, I was convinced my active one would be low as my serum one was low but the active one has come back high so I was a bit puzzled by it.

3 options in my mind:

1) You're not B12 deficient.

2) The supplement you were taking is still in your system, despite the 2 month gap.

3) Your problem with absorption is further down the line, i.e. transport defect or methylation cycle defect.

How are you feeling at the moment?

lucylocks profile image
lucylocks in reply to

Hi

Many thanks for your reply, been feeling a bit off

really tired, a bit down in the dumps, niggling anxiety, aches and pains, tingling in feet

and numb hand and a arm on waking.

Not sure if some or all symptoms are to do with my thyroid or what I thought was the B12.

If like you say I am not deficient I just don't understand why the serum test was low at 377.

I wondered if the supplement was still in my system but I did stop 2 months ago so I would have thought it would not still be in by now.

If it is the third would that explain why the active is at the top of the range but low in the blood.

Best Wishes browny

in reply tolucylocks

There is such a thing as haptocorrin (also called transcobalamin I) deficiency - B12 bound to haptocorrin is the inactive portion. This has been put forward as a reason why some people test low for serum B12 but have no symptoms of deficiency, because actually they still have plenty of the active stuff to do the job. There's an article about this here:

clinchem.org/content/49/8/1...

That aside you do have some unexplained symptoms, so the question is when you were on the sublinguals were these symptoms better?

lucylocks profile image
lucylocks in reply to

Thanks for the link but I would be lying if I said I understand it, it is a bit beyond me.

Yes my symptoms were better on the sublinguals for a while until I developed numbness on one side of the face and I thought I was having a stroke so G.P. sent me to the TIA clinic and I had a CT scan an all thankfully was O.K.

My daughter checked on the web and came upon a site that said too much supplementation can cause facial numbness lovetoknowvitamins.co.uk so that's when I stopped using it and decided to have the Active B12 test. Since I have stopped the sublinguaI I still had have the cheek numbness but nowhere near as bad.

I am so confused about the whole thing.

in reply tolucylocks

Do you have an FBC and other blood results including thyroid? I think you need to go back to basics and look at the whole picture. Just had a quick look back on your questions and remember now that you had had low folate which rose when you took the b12. Have you had folate tested since you stopped taking B12? The FBC might also give clues - MCV, MCH, MCHC etc.

lucylocks profile image
lucylocks in reply to

Hi hamster,

Originally diagnoised with hypo Feb. 2011 TSH 8.9 T4 10

(no ranges as did not know then to ask for them, but remembered G.P.

said TSH near top and T4 near bottom. given 50 mcg levo

antibodies 58 range 0 - 75. Left on this dose until Sept. 2012 then increased to 75mcg.

March 2013 started to feel very unwell

FBC - (VW) - normal no action

Haemoglobin estimation 139.0gl range 120 - 160g/L

Total white cell count 5.4 10*9/L range 4.00 11.00 10*9/L

Platelet count 270 10*9/L range 150.00 - 400.00 10.9/L

Red blood count (RBC) 4.51 10*12/L range 4.00 - 5.20 10*12/L

Haematocrit 0.408 range 0.36 - 0.46

MVC 90.5 fL. range 80.00 - 100.00 fL.

MCH 30.8 pg range 26.00 - 34.00 pg

Red blood cell distribut width 13.1 range 11.50 - 16.50

Neutrophil count 2.38 10*9/L range 2.00 - 7.70 10*9/L

Lymphocyte count 2.57 10*9/L range 0.80 - 3.40 10*9/L

Monocyte count 0.32 10*9/L range 0.20 - 0.80 10*9/L

Eosinophil count 0.13 10*9/L range 0.04 - 0.40 10*9/L

Basophil count 0.02 10*9/L range 0.01 - 0.10 10*9/L

TSH 4.3 T4 not tested

Vit B12 377ng/L (range 180 - 1133)

Folate 5.3ug/L (range 3.0 - 20.00)

Ferritin 88ug/L (range - 15 - 300)

Vit D 22 (range 50 - 70)

Random blood sugar - raised 6.3 (range 3.60 - 6.0)

April 2013

Fasting Plasma glucose level - Normal 4.8 (range 3.60 - 6.0)

HbA1c levl - IFCC standardised - (NIC) 30 mmol/mol Normal No action

May 2013 now taking 100mcg levo

July 2013 TSH 0.25 range 0.35 - 4.70 T4 12 range 7.8 - 21.00

Sept 2013 saw endo increased levo to 125 mcg for 4 weeks then up to 150mcg but after 4 weeks on 150mcg started getting severe palpitations and internal shaking so cut back to 125mcg.

2 weeks later bloods taken on 3rd Dec. 2013 so result based on above dosage

TSH - 0.05 range 0.35 - 4.70 T4 13 range 7.8 - 21.00

T3 4.4 range 3.8 - 6.0

Endo said to take 100mcg one day 125mcg next.

Maybe these results may show some light on things.

Thanks for all your help again, very much appreciated.

Best wishes browny

in reply tolucylocks

Were you given vit D?

lucylocks profile image
lucylocks in reply to

Hi

Sorry I should have said the G.P. gave me the bog standard one with calcium, that is when I found this site and was told it would do nothing to raise the vit D as it only had 800 iu

I bought sublingual and started using 6000iu daily and with the sun we had in the summer by Sept. it has risen to 93 since then I have been on a maintenance dose of

1000iu daily.

lucylocks profile image
lucylocks in reply to

Sorry forgot I have not had the folate tested since stopping the sublinguals, I was thinking of asking G.P. if not I will get it done privately.

in reply tolucylocks

I'd definitely get that retested, 5.3 is pretty low. Would be interesting to see what it's doing now.

lucylocks profile image
lucylocks in reply to

Yes I will, I am now wondering if it the folate rather than B12 causing some of the symptoms, sorry to bother you again but do the other results look O.K to you?

in reply to

Meant to say that, just my observation, but low TSH coupled with low T4 and T3 is often seen where there are nutritional deficiencies, so I think you are on the right track with correcting these things.

lucylocks profile image
lucylocks in reply to

Many thanks, I am thinking of seeing someone privately in the New Year to look at everything.

Merry Christmas and A Happy and Healthy New Year.

browny

Hi Brownie, when you started feeling unwell in Feb 2013 fo you know what brand of levo-thyroxine you were taking? And had you just started a new batch?

lucylocks profile image
lucylocks in reply to

Hi

I am taking Actavis, I have had a different brand before when I was first diagnosed nearly 3 years ago but I cannot remember which is was. When I started feel unwell earlier in the year I found I had low Vit D folate and B12 so started supplementing.

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