is it possible to have low active b12 but high ... - Thyroid UK

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is it possible to have low active b12 but high results ?

Chouchou1234 profile image
14 Replies

My b12 is high at the top end . 959 (max is 771) not on any supplements and my diet is good but nothing absorbing ! Was 1551 told to stop supplements

Folate 20 (2.9 to 26.8) it’s good?

Ferritin 58 (13 to 150) need work eat more liver

Vit d 108 - good?

I’m a mess and so exhausted. i looked at previous results

2021 My T3 was 2.3 on 50mcg t4 - tsh 2.8 and t4 14

then went up to 100mcg my tsh 0.02 t4 20 (12 to 22) T3 was 2.3 again

But I am now on t4 125mcg and T3 30mcg

Last results

Tsh less than 0.01

T4 19 (12 to 22)

T3 4.8 (4.1 to 6.8)

Bones are killing me

Exhausted no digestion

I took my morning dose close together 15mcg in one go - it’s 3 hours later and freezing cold and tired. Pain is beyond

My creatinine is very low 43 ( 49 to 90) so severe muscle loss? Previously in January was 59

Bone profile normal

jidney filtration rate over 90% - excellent

I did have gluten by accident yesterday

2 last week I may have had covid my CRP 5.7 normally 0.6 and ESR 23 (max is 23)

Liver alp raised as normal

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Chouchou1234
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14 Replies
waveylines profile image
waveylines

So sorry to hear this. Could you add the ranges (figures in brackets) on your results please. Ranges vary from lab to lab.Active b12 test to standard B12 test. It's possible to have a good level showing in a standard b12 test but have a low active B12 test result. Active B12 test checks how much has been converted for use, standard b12 tests the total b12 in your body. I'm no expert on increasing active B12 except it could be related to a low folate level. Seaside Susie is very knowledgeable about this side of things & am sure will come along & give you good advice.

Another good source of advice is B12d. org. You can submit an email and they can advise you too.

Chouchou1234 profile image
Chouchou1234 in reply towaveylines

I’m just clutching at straws.

I looked at previous results and creatinine was never that low . Around 58 in January

Maybe water loaded for last test as so thirsty all the time.

waveylines profile image
waveylines in reply toChouchou1234

I don't think you are clutching at straws at all! You can only utilise the Active B so it does need addressing as does your folate.So glad you are on T3 now as well. You are a poor converter. Your T3 results on latest blood tests show it's improved but still has room for improvement. Room for an increase in T3.

Have you had your vit D checked? Sorry see you have. Low vit D cause fatigue and aching bones. Also commonly low in hypothyroidism. Vitamin D Council is a useful website.

Can you pop the ranges on for folate, ferritin & vit D. According to the labs I use the ferritin & folate look low but ranges do vary so it's important to pop them on.

Chouchou1234 profile image
Chouchou1234 in reply towaveylines

thank you for reply -

I have added ranges

Folate is good .

I have been annoying lots of people previously with of questions .

I have no idea 🤷‍♀️ anymore

waveylines profile image
waveylines in reply toChouchou1234

As you say Ferritin isn't so you need an iron panel doing. Probably need to take supplements but I am no expert on boasting iron.

Yes folate looks good now.... Would hope so with taking Thorne Basic B with folate complex!

You did leave a week off not taking Thorne before blood tests? Biotin skews results so has to be stopped for a week.

waveylines profile image
waveylines in reply toChouchou1234

Am sure you haven't annoyed people. It's complex and there is a lot to learn. Also when your thyroid out of whack you just don't process or remember information well. 😊😊Please don't worry about having to have things explained again and again. You are not alone in this!

To me & please remember I'm not a doctor you need to sort your iron out and ask you doctor if you could have an increase in your T3 meds.

I'd also email them at B12d. org about your low B12 active result. There are different things you can do to support b12 conversion but what & how is beyond me.

Hang in their you will get sorted in the end. ❤️

Chouchou1234 profile image
Chouchou1234 in reply towaveylines

thank you xxx

humanbean profile image
humanbean

What form of B12 did your B12 supplement contain?

Some links you might find useful :

perniciousanemia.org/b12/fo...

perniciousanemia.org/b12/le...

stichtingb12tekort.nl/weten...

I always do best on methylcobalamin, but I know some people prefer one of the others.

My level of serum B12 has been as high as > 2000 ng/L.

My Active B12 has been as high as > 256 pmol/L.

Neither level appears to have done me any harm. If all I've done is made expensive urine then that is my loss, and I'll carry on anyway, and it isn't the job of a doctor to decide what I spend my money on.

It is only since I pushed my B12 levels very high with methylcobalamin that I got rid of two problems I'd had since before the onset of puberty - spots and eczema. If I stop taking the B12 both of these problems come back.

B12 is the only nutrient that I push to high levels. I keep everything else within range.

humanbean profile image
humanbean in reply tohumanbean

I forgot to say - there is a condition called "Functional B12 Deficiency". I think this is what I might have.

pn.bmj.com/content/9/1/37

nature.com/articles/ejcn201...

waveylines profile image
waveylines in reply tohumanbean

I'm with you Humanbean.... B12 isn't well understood and if you land on needing injections then the Nice guidelines are ridiculously infrequent! I too find that I need my levels of B12 high to get the benifit, if allowed to lower symptoms reappear. For me it's numbness, tremors and blurred vision. I've come to the conclusion that I do not store b12 at all hence the high frequency rate. Research seems very poor/scant on this. Guess there's no money in it for big pharmacy... Lol. Am several years on & haven't been able to reduce my injection frequency. I now doubt I ever will.

Chouchou1234 profile image
Chouchou1234 in reply tohumanbean

this is the thing I haven’t been taking any supplements the past 5 months as told not to.

i was taking on prescription ‘ b co strong ‘ and thiamine.

It’s obviously dropped but reading high levels might not mean high if active is not high. It’s just a stab in the dark.

I’m in tears again tonight - I had tiny lunch at 2 pm and so uncomfortable in my small bowel I can’t breathe. The pain is unbearable .

Also I have massive weight gain fat gain recently.

No one is coming to save me. I’m paralysed in fear and pain .

Thank you again

I’m also weaker I’ve the shuffle gait going on .

Thank you

humanbean profile image
humanbean in reply toChouchou1234

I heard of vitamin B Compound Strong several years ago although I can't remember the circumstances, and I wondered at the time how it got such a weird name.

patient-info.co.uk/vitamin-...

The problem with it is that it misses out several of the B vitamins of the kind you would get in a good quality B Complex bought over the counter, and the doses of most of the vitamins it does supply are very low.

It contains :

Vitamin B3 (Niacinamide or nicotinamide)

Vitamin B6 in an inactive form

Vitamin B2 But I'm not sure if it is an active or inactive form

Vitamin B1 (thiamine) in a miniscule dose but an active form

It doesn't supply

Vitamin B5 (pantothenic acid)

Vitamin B7 (choline)

Vitamin B9 (folate)

Vitamin B12 (cobalamin)

Another thing missing is inositol which often appears in B Complex products.

It seems to me that doctors are almost completely indifferent to patients with nutrient deficiencies. They just don't appear to believe that nutrients are important or that low levels cause ill health. They seem to be convinced that everyone can absorb all the nutrients they meed in a standard diet. Personally, I would never rely on a doctor to fix any low levels of nutrients that I had.

Compare your B compound (ingredients and doses) with one of the popular B Complex products people buy over the counter.

I've seen these mentioned on the forum recently :

hempoutlet.co.uk/vitablosso...

thorne.com/products/dp/basi...

I'm sure there are others but I don't have a link.

The only B vitamin which could cause problems at high doses is vitamin B6. It can cause peripheral neuropathy when it is taken in very high doses, and also when it is too low. But all the others are water soluble and excess is excreted in the urine.

There are different forms of some B vitamins. Personally I take products which contain the active versions of B Vitamins - a list is here :

jigsawhealth.com/blogs/news...

I know that some people struggle with methylfolate - if that happens then taking tiny doses and gradually building up can help some people.

I can't keep my folate and B12 up to optimal levels with a B Complex alone so I also take a separate methylcobalamin supplement and a separate methylfolate supplement 3 or 4 days a week, and a B Complex nearly every day.

The worst your doctor can say is that any B vitamin supplements you take are a waste of money. But you can ignore comments like that if you want. I certainly do!

Chouchou1234 profile image
Chouchou1234 in reply tohumanbean

is it though possible to have high b12 And not active b12.

Sorry I’m a little confused -! And no retention of information. I think I I tried to put laundry in the fridge earlier

Question - I did my bloods this morning as 24 hours t4 and T3 12 hours . What I noticed I used to have this - I was having heart palpitations a bit I used to get that all the time but stopped after taking thyroid med.

next thing a definite- my stomach and legs get bloated after taking it .

Chouchou1234 profile image
Chouchou1234 in reply tohumanbean

Nicotinamide 20mg, Pyridoxine Hydrochloride 2mg, Riboflavin 2mg and Thiamine Mononitrate 4.85mg.

That’s the ingredients !

Not sure 🤔 if that’s good . Xx

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