Confused : Hi so I've just started supplementing... - Thyroid UK

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nettiboo1982 profile image
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Hi so I've just started supplementing b12 and b vits and I've been in touch with the lady at b12 info about b12 deficiency I basically asked when my bloods need checking after starting the supplements she advised id need too be free of taking b vits for a true reading of my b12 levels but surely I need too have a test too show the supplements are working? I also have questions about how you supplement b12 deficiency if you were pregnant my doc wont give me jabs as my b12 was 173 and our ranges here start at 180 this is all so confusing.

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nettiboo1982 profile image
nettiboo1982
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18 Replies
SeasideSusie profile image
SeasideSusieRemembering

I don't know about B12 but I had the same question about Vit D.

I was severely deficient in Vit D and started supplementing, high dose for a few weeks. I contacted the lab who was doing the test for me (privately) and asked if I should discontinue supplementing for the test. I was told that if I wanted to know my level whilst supplementing to continue but if I wanted to know the level without supplementing then I should leave it off for a few weeks.

I continued supplementing, the test showed my level had shot up to optimally replete which allowed me to decide to lower the dose to a maintenance level. I shall retest to see whether the maintenance level is keeping my Vit D at a good level or whether I need to adjust the dose.

So, like you, I wanted to know if the supplements were working and whether I was taking too much or too little. When I retest Vit D soon I shall continue to supplement to see how the adjustment to the dose has affected the level.

Marz profile image
Marz

The lady who advised you is correct. Once you are supplementing the test results are skewed. It tells you ONLY about the B12 circulating in your blood. Only 20% of that result is available to be used at a cellular level where it is needed.

You may wish to have the Active B12 test done - which can then tell you what is happening at a cellular level - it is a Private Test and I read recently that you do not have to stop taking the B12. I believe it is done at St Thomas's hospital in London and they have a website.\

B12 is water soluble so can be excreted and you cannot overdose. I am not a medical person but I would assume you are deficient and to keep supplementing.

nettiboo1982 profile image
nettiboo1982 in reply to Marz

Thank you both I will keep taking it and go for a blood test in a month of so time

Treepie profile image
Treepie in reply to Marz

Marz I read on one site that too much B12 can have side effects. The one I remember is itching.

Marz profile image
Marz in reply to Treepie

...indeed Treepie we are all individuals and all have different side effects to most things. I am a weekly B12 injection person - and prefer to be able to walk without losing my balance - especially when looking down or turning right or left - the side effects are minimal in comparison I can assure you.... I also teach yoga which quickly teaches you the challenges of the asanas and I know where I am left wanting.... It's all a matter of balance :-) After yoga today I was in pain and wobbly - so off I went to the next village for a jab with my Physio - and after an hour or so I am without pain and the jelly in my legs has stopped wobbling ! My friend who normally does my injections was not at class today.

I lost my Terminal Ileum over 40 years ago - and they forgot to tell me I would need B12 injections for life :-)

Treepie profile image
Treepie in reply to Marz

I have not had your problems but I have noticed my balance detiorating again in the last couple of weeks as the temperature has fallen. I suspect you do not live in the Crete mountains but does it get cold where you are?

I take 5000mcg a day Jarrows B12 plus some in multivits but the temperature change seems to have significant effects. My health improved incredibly whilst in the Canaries in May and had remained ok since except for muscle and tendon pains.

Marz profile image
Marz in reply to Treepie

It is still around 25/26 here and we are loving every minute of the lower temps ! Muscle and tendon pains - suggest inflammation to me ! How are your D levels and are you Gluten Free ?

The temps drop after Christmas and yes we have snow !

Treepie profile image
Treepie in reply to Marz

Lucky you! Next month I will be holidays get in the South Atlantic at not much above zero plus wind and rain.It seemed a good idea when I booked as a 70th present to myself! Still last three days we move to 28 degrees.

I have restarted vit D supplements over what's in the multivits now the sun is going ,although I am basking in it ( through glass) right now.

I have not tried gluten free ,does not appeal.But May after holiday as wife may have IBS so might help both of us.

Marz profile image
Marz in reply to Treepie

IBS - one of those syndromes that Docs seem to diagnose willy nilly ! I read Dr Myhills book - Sustainable Medicine - and she mentioned SIBO - Small Intestinal Bacteria Overgrowth which she prefers to call Gut Fermentation. She suggests 2000mg-6000mg of VitC taken at bedtime - to prevent this. I have started on 2000 and have noticed certain improvements. I have Crohns with VERY few symptoms. It may just help !

Treepie profile image
Treepie in reply to Marz

Thanks ,I will suggest that and get he book.

kishlan profile image
kishlan

just want to mention, for those who may not be aware, B12 comes in different forms. the most common is CYANOCOBALAMIN but this is not absorbed very well by the body so it is not of much value. METHYLCOBALAMIN is a much better form to take for better absorption. i take 5000 mcg sublingually. it has helped with numbness and tingling, among other things. HYDROXOCOBALAMIN is the form often used when giving injections.

it is odd that my B12 lab results were extremely high (before i was supplementing with it) and, as a result, most docs would say i didn't need it. however, i was having major numbness, tingling and other nerve problems and i know that B12 is good for that. so, i started myself on 5000 mcg sublingually, every other day (years ago i took 11,000 mcg daily so i didn't think there would be a problem with 5000 mcg). i am also supplementing with vit D3, magnesium and potassium along with the NDT. i do see a significant decrease with symptoms of extreme fatigue, severe muscle spasms/cramps, numbness and tingling of the extremities, getting up and sitting down and walking.

QUE6T-33 profile image
QUE6T-33 in reply to kishlan

Hi Kishlan - interesting - so your B12 levels high before supplementing,

what happened yo levels after supplementing ?

kishlan profile image
kishlan in reply to QUE6T-33

hi, QUE6T-33. in answer to your question......dunno.....lol. i had stopped taking almost all the supplements before i ever got tested again. taking care of my 95 year old mom is a 24/7 job and i get very little sleep (maybe an hour or two a night). i think i was in a real fog (brain dead) and was forgetting to take the capsules so it was easier to just temporarily quit. it will be interesting to see what the levels will be when i go back on the B12 for awhile.

QUE6T-33 profile image
QUE6T-33 in reply to kishlan

Haha - yep, post your results on here when next tested.

Ah, you sound as though you have a lot on your plate -

hope your health improves. My best

kishlan profile image
kishlan in reply to QUE6T-33

thanks for your good wishes. my health has actually improved. i would hate to describe how i was feeling 1-2 years ago. if i remember, i will post the results after my next labs. you may have to remind me now and then....lololol. you said..."Ah, you sound as though you have a lot on your plate....". well, that is an understatement if ever i heard one.....lol. i "keep on truckin'".....cause i have to :-)

humanbean profile image
humanbean in reply to kishlan

My serum B12 levels were over the range, and yet I had lots of symptoms suggesting I was suffering from B12 deficiency. I started taking 5000mcg B12 (methylcobalamin) sublingually every day. My B12 deficiency symptoms improved immensely so I kept it up for several months. I recently reduced to 1000mcg per day as a trial to see if my symptoms will come back or not.

When I was taking 5000mcg per day my serum B12 levels ended up being recorded as >2000 ng/L (tests were done privately), and no doctor seeing those results has complained yet.

You might find this paper of interest :

qjmed.oxfordjournals.org/co...

kishlan profile image
kishlan in reply to humanbean

thanks for the article. i have started reading it several times but get pulled away when my bed ridden 95 year old mother calls and calls and calls.........and calls and calls lol. my vitamin B12 was 1649 pg/mL and that was before i was taking it with any regularity. recently, i have "fallen off the wagon" with my supplements and the only thing i am taking is nature-throid.

again, thanks for sending the paper to read.

MariLiz profile image
MariLiz

I'm surprised your doctor wouldn't agree to give you injections at a level of 173. Mine was picked up as "low" at 176, and treatment began then. My GP said anything below 200 should be treated. Why are they all working to different levels. Have you tried contacting the Pernicious Anaemia Society website for advice, especially if you are pregnant? Best wishes MariLiz

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