High doses of B12....?: Hi all... my... - Fibromyalgia Acti...

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High doses of B12....?

sporty333 profile image
24 Replies

Hi all...

my private doctor has suggested i might need high doses of B12, via injection, to improve my fatigue and brain fog. Has anyone else here taken high doses of B12?

We're unsure this is the cause and reason for my symptoms but we're going to try the B12 route. Fingers crossed! I've started on 2 ml a day, injected into my butt.

Any advice for me on going forward?

Thanks

Si

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sporty333
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24 Replies
josieowl profile image
josieowl

yep i have them as does my son, daughter, mum, 2 sisters, brother and all of their children. it gives me a boost just after i have it and i know when im due my next one too, but i still have my fybro and memory lapses ect. we are now on the big dose every 12 weeks but going to see dr about having 8 weeks as can feel the need by week 7!

sporty333 profile image
sporty333 in reply tojosieowl

When you say a big dose what are we talking? What isssssss a big dose ?

josieowl profile image
josieowl in reply tosporty333

do ypu know i never asked dr just said they were giving us a big dose i just trust my dr to do whats best for us!! me and my family are being studied by a genasist as they have not know so many in one family ( in total 18 of us) to have B12 deficiency but none of us have pernicious anemia.

Marz profile image
Marz

b12d.org may give you some help with understanding the seriousness of low B12..... also take a look at the Pernicious Anaemia Society - - think there is a link on the above website. B12 testing is quite vague as only 80% of the amount in the blood actually gets to the cells where it is needed. There is now an Active B12 test done in the UK at St Thomas's Hospital in London - just put Active B12 Test into SEARCH ! If you have the routine test then the result must be near the TOP of the range. B12 is better absorbed with Folic Acid. Maybe worth having your Iron Ferritin and Folates tested too - as low B12 can often be connected to the others.

You cannot overdose on B12 - the excess is just excreted.... Whilst you are at it have the VitD tested as that will help with aches and pains. It is a steroidal pre-hormone and so very important.....again the results need to be near the top of the range ...

You can buy B12 patches as well as drops and chewable tablets - so I would keep boosting the injections with the other methods....

Also which B12 are you injecting ? Cyanocobalamin is the cheap version and is one molecule of cyanide ! Maybe the Hydroxycobalamin is the jab of choice.....and I think that is the one they use in the UK - so you should be fine. For the tablets ensure it is Methylcobalamin.....

sporty333 profile image
sporty333 in reply toMarz

Hi there, thanks for your reply, thanks for all your replies.

I'm only doing these B12 on a hunch it might improve my symptoms! Any blood tests I've had have come back good, apart from a low but in range iron. The rest of them have been good, B12 included.

I have been taking the the B12 the gp gives you but today my private doctor is sending me out some high concentration methocolbalam . I take a general vit B compound as well. Also vit D and a general multi MIT and min. Does that cover things?

Marz profile image
Marz in reply tosporty333

I see on your Profile that you are sub-clinical Hypo - so your symptoms could be connected to that. In which case LOW B12 et al is all part of the condition due to poor absorption and low metabolism in the gut ! Maybe post your last thyroid blood tests and lets have a look - many Docs are unable to understand them. Did you have all the tests - TSH FT4 FT3 and Thyroid Anti-bodies Anti-TPO and Anti-Tg.

Just for your Information when I was diagnosed here in Crete with Hashimotos - all the results were in range - but the anti-bodies HIGH. Had I remained in the UK after retiring I would still be crawling about and sleeping for hours with a Fibro diagnosis as they are reluctant to do the full range of tests - COSTS ?

And so we stay poorly - with loads of pills for this and that - making dosh for BIG Pharma. Low Thyroid is serious and demands the correct investigations.....and millions of people deserve the correct treatment....

sporty333 profile image
sporty333 in reply toMarz

Hi Marz

Yes my main diagnoses is hypothyroid but after 19 months on treatment and still unwell my private doctor is starting to look at other causes..... Hence last weeks suggestion of perhaps B12 issues. I've been on levo, ndt and now T3 only. Paul Robinson is helping me with all this, and dr Myhill my overall health.

So are you saying even though my B12 blood levels are usually in range high, it still might be a reason for my symptoms?

I have had heavy pollutant exposure in the 90's and was veggie for 14 years. I guess I have some case to suspect it. However any blood tests I've had it's only been iron and thyroid low.

Si

Marz profile image
Marz in reply tosporty333

Yes of course you are right. You are also in very good hands ! I have read that the B12 in a routine Serum test does not indicate the amount available at a cellular level. Whatever your result for B12 has been - only around 20% is available at a cellular level where it is most needed. Have you considered the ACTIVE B12 test from St Thomas's Hospital in London - which is more indicative of the reality !

How is your gut health ? Gluten ?

sporty333 profile image
sporty333 in reply toMarz

Hi M

Yes I have very recently heard if this test but when I showed dr Myhill she wasn't that impressed. I forget for which reason :0) she's thinking more along the lines if try it and see. Tests are so expensive on top of consultations!!

Gut health is better, for sure. There's still fermenting tho, cause if I have too much sugary type foods I get wind. Stick to my Paleo type diet tho and I'm fine.

It's the fatigue and brain fog for me! Relentless! Lol

Marz profile image
Marz in reply tosporty333

Have just read this amazing book which may interest you - don't tell Dr Myhill - only joking ! It's called - Why isn't my Brain Working ? - by Datis Kharrazian. You may have heard of it and he has a website....lots of info there too... Have you tried to give up gluten - apparently Monster Molecules from gluten can permeate the blood/brain barrier.....Another book is by David Perlmutter - or something like that - and the book is - Grain Brain - same topic. gluten is a killer !

Have just listened to an on-line conference - The Gluten Summit - A Grain of Truth. 29 experts from around the world....and do you know what - it makes sense....

Just one more snippet - search on YouTube for B12 and Alzheimers - Professor Smith - Pernicious Anaemia Conference. He starts to speak about 4 minutes into the video. Then tell me the Active B12 test isn't important ! Sometimes even the VERY best docs are not up to speed :-)

sporty333 profile image
sporty333 in reply toMarz

One should always be open minded hey :0)

I've not strictly given up gluten no. To be honest I don't find my diet is a big issue for me. I feel the same on an ultra strict diet or two weeks of whatever I like!! Lol

Can I ask what the consensus on these brain issues are? Ie what are the specific symptoms? I can't focus very well and it's hard to look at people for very long. Hard to explain really. That goes along with the slow thinking etc

Si

Marz profile image
Marz in reply tosporty333

OMG - the book is huge - almost 600 pages - so where do I start ? Take a look at his website....and maybe the book on amazon allows you to look inside and have a sneak read.... The only active thyroid hormone is T3 and most of the T3 receptors are in the brain - and the second highest are in the gut....that should go some way to answering your concerns........

sporty333 profile image
sporty333 in reply toMarz

.... Oh yes and I had a full and comprehensive gut test and that cane back low stomach acid and with fermenting gut. However I was self injecting B12 for 6 months and it didn't help things, not noticeably....

Marz profile image
Marz in reply tosporty333

Low stomach acid is linked to your Hypo state ! Thyroid hormones are needed in every cell of your body - all 7 trillion + - need T3. That includes the cells of your stomach - the parietal cells - which secrete Intrinsic Factor. That binds to the B12 molecules and transports the B12 safely through the yards of gut to the Terminal Ileum.. Low thyroid hormones = low parietal cell activity. Maybe you need to have your anti-bodies tested to the Parietal Cells - check out b12d.org The Fermenting gut was caused by the low acid in the stomach - proteins cannot be digested due to low acid so hang around in the gut too long and then ferment. Do not eat fruit after midday - it just lies in the gut fermenting....

I do not understand how you can say your guts are fine - its all going on inside ! You cannot see them !! From the conference I listened to on-line there was a talk about anti-bodies lying dormant for 40 years before causing problems. That is anti-bodies caused by gluten.....

sporty333 profile image
sporty333 in reply toMarz

My my you are knowledgeable Marz :0) I'm a bit lost tho as to what you're suggesting is my issues. I don't have many noticeable signs of gut issues is what I'm saying.

I looked at that website. It's great, thank you! So much information! I don't have the pins and needles tho! Lol

Marz profile image
Marz in reply tosporty333

..that's great news ! I was just pointing you in the direction of bits and pieces of information - for you to read and make your own mind up....based on the information you gave regarding brain fog and fatigue. Not suggesting you have anything. You too have a good handle on things as Dr Myhill and Paul Robinson are well respected - so well done you for seeking their help ! :-)

sporty333 profile image
sporty333 in reply toMarz

It's the answers and good health I need though Marz :0/

Fibrofoggiest profile image
Fibrofoggiest

Hi sporty, I have had vit b injections in the past, I can't seem to cope taking them orally, they make me vomit almost immediately. Thank you Marz for mentioning the patch for B12. I think that would work for me. I am having some tests done this week so I will mention it to my doctor, thank you all for the reminder though, methinks I would have forgotten it had you not mentioned it.

I hope you start to feel the benefits very soon :-)

Foggy x

RUBELS profile image
RUBELS

I have been having b12 injections for over 23 years and have them every 8 weekly (hydroxocobalamin 1mg) which the recommended dosage for pernicious aneamia. I had to have what is called the shilling test to be administered so frequently. This is not an injection you can take when you feel you need a BOOST. It has to be administered by a professional. Maybe I've got my wires crossed but please check you're private doctor is giving the correct injection, for you to "have a try of". There is a possibility of b12 overdose which could have adverse effects on your system. Take care and Good Luck feeling boosted xxx

sporty333 profile image
sporty333 in reply toRUBELS

Hi

Over dose you say? She's suggesting 0.5ml a day, of hydroco

Si

haribo36 profile image
haribo36

Good morning,I saw professor Davies in his private clinic in London where I had a vitamin b12 injection and lignocaine which boosted me a lot but it only lasted a week to two weeks.I couldn't afford to see him again though xxx

Glenys profile image
Glenys

Hi

I started taking B12 tablets from H&Barratt, and wasn't sure how they affected me until I had a blood count done, and the GP said she had never seen such a high level of B12 in anyone's bloods before - was I having injections? She then told me to stop taking them as it was silly and a waste of money. So I stopped them and around 3 months later I started getting trouble with my "words" . I thought it was stress, so looked up the symptoms and one of the first things it came up with was "Vit B12 deficiency". So back on them again till lately, around 2 months ago when I started a new capsule of fish oils, Q10 and sterols, and it included Vit B12 , but not as high.

Well I have been tired most of the time since, and feel the same as before, all muggy, and struggling with short term memory. So back on the again, but thanks to now knowing about methalcobalamin, I will check that is the one to go for next, and with folic acid - thanks for that Marz :-)

Marz profile image
Marz in reply toGlenys

I take Jarrow Methylcobalamin chewable 1000mcg from Amazon - I believe they are reduced at the moment - no nasties in the fillers ! My patches await me in the UK - I will be travelling over soon ! For some reason they wouldn't ship to Crete :-) HB are often cheaper but check out the actual amount of Active B12 in each tablet - lots of filler I suspect !

sporty333 profile image
sporty333

Hi,

Can everyone tell me what they pay for their Methylocobamin? Also, where they get it from? I'm talking the liquid for injecting, mostly.

SS

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