B12 Supplementing advice please - Pernicious Anaemi...

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B12 Supplementing advice please

tzracer profile image
11 Replies

Hi, I'm hypothyroid and latest blood test show thyroid hormone levels as good so I'm working on getting my B12, Vit D and folate up to optimal levels. I have lack of energy, a lot of muscular aches and joint pain, also since around February this year when I fall asleep my arms go numb. I thought at first it may have been related to sleeping position but it happens if I sleep on my side, back, front or sitting up. I haven't been to the GP with this. My memory is pretty bad with brain fog and I can forget mid sentence what I was talking about.

I can only find one old B12 result

04.11.10 Serum vitamin B12 ng/L 402 (172 - 1162)

17.09.15 Serum Ferritin 277 ug/l (16-323)

Fed up of feeling like c**p and being fobbed off by GP's I wanting to speed things up and having read some posts on here, I followed a link to order some B12 ampules (1000ug Hydroxocobalamin) from Goldpharma, and syringes, needles, swabs from UK.

I did lots of reading and gave myself an intramuscular shot at the weekend.

How quickly should you feel any different? The numbness hasn't stopped.

What kind of impact does one shot have on the levels in your blood, should I follow up with another injection?

I'm ready for some flack as I should have asked these questions before I guess.

Advice and constructive criticism accepted ;-)

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tzracer
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11 Replies
wedgewood profile image
wedgewood

The usual treatment for B12 deficiency/PA , is to start with loading doses , which usually means 6 injections one every other day . Continue until there is no improvement . Then if there are no neurological symotoms one injection every 3 months . With neurological symptoms one every 2 months . If you have PA. theses injections are for life . You should also make sure that you are taking plenty of folate ( green leafy vegetables, peas ) or take it as a supplement (folic acid)

But I recommend that you go to see your doctor first .

tzracer profile image
tzracer in reply towedgewood

Thanks for the feedback, I don't have any faith in my doctor, it's only through help from the thyroid forum that I have got my thyroid levels reasonable. It took an endocrinologist to spot my vitamin D level was 17, and even then the surgery didn't follow standard guidelines so a I am still below minimum range, hence being here. I will try and see what they say.

JMN2017 profile image
JMN2017

As already mentioned by wedgewood , continue injecting alternate days until NO FURTHER improvement re neuro symptoms - this includes your pins and needles, poor memory etc.

As to how long before you start feeling better it is different with each person, it seems.

I've now been giving myself alt day injections for the last month and can happily say that, this past week, I've definitely felt much better, improved energy although I still do get tired, of course.

I also have had 'Irritable Bladder' for over 5 yrs and that too seems to be slowly improving - about which I am extremely pleased, as you might imagine.

So, stick with it, until you feel you can reduce the injections.

As you feel, I have felt so 'fobbed off' by GP that, in the end, I decided to self-inject and am so pleased I have as I feel so much more 'alive'. My friends have commented on noticing a difference too. I'm now starting to 'do' (active) things, including housework, visiting friends, hobbies etc - it's just great :)

tzracer profile image
tzracer in reply toJMN2017

Thanks for the reply and encouraging words. good to hear it has worked for you. One step at a time but I'm determined to not accept that feeling so bad is normal.

JMN2017 profile image
JMN2017 in reply totzracer

Yes, I agree. Feeling so bad is not normal, even though the GPs might like to let you believe.

Stick with it; one step at a time and give your B12 injections time. You too, most likely, will feel better. If not, then more research etc before you give something else a go. Try to keep positive, even though it can be really hard. ;)

I do hope you start feeling better very soon. {{{Hugs}}}

tzracer profile image
tzracer in reply toJMN2017

As a bit of a follow up and I have some more questions if you don't mind. My symptoms haven't eased, after 9 shots, I started to spread the injections out as my wife was really worried, despite all the reading I had done on here to say there is little chance of side effects. The GP did an X-ray and blood tests as part of looking into numb arms and has dropped my thyroid dose (which is not an issue for here) and my B12 was up to 2000 Ng/L (172 - 1162). The X-ray showed early arthritis but no compression of nerves, GP was sceptical about it being B12 as it wasn't in my feet as well.

What is the rationale in continuing until no improvement. Is there not enough in my blood now. (Sorry if that's a dumb question to ask). I have 11 shots left before I need to order more.

Marz profile image
Marz

B12 works with Folate in the body so taking a good B Complex will keep all the B's in balance and give you the Folate/Folic Acid you need.

I have been without a Terminal Ileum for over 43 years and I started B12 jabs around 3/4 years ago. I have experienced improvements but live with some of the consequences. My B12 levels were always around the 300 mark so would have been told here I was OK. We are all so individual and going by symptoms is key. I also have Hashimotos.

What is the range for the Ferritin ? - seems high. How much VitD are you taking ?

tzracer profile image
tzracer in reply toMarz

My Serum Ferritin was 314 ug/L (16-323) in 2012, 277ug/L (16-323) Sept 2015

Serum Folate 8.3 ug/L (4.6-18.7) in Sept 2015

Haven't been tested since

Was on daily maintenance dose of 800iu of vitamin D this has been doubled by the endocrinologist after the doctors surgery didn't follow guidelines and I didn't make the bottom of the range when retested.

Marz profile image
Marz in reply totzracer

vitamindcouncil.org/rct-sug...

Apologies if you are not a senior :-)

tzracer profile image
tzracer in reply toMarz

Thanks, lol I just feel like a senior at the moment. So I'll have to top up the doctors 1600iu dose :-) to get anywhere

Marz profile image
Marz in reply totzracer

I live in the sun and still take 5000IU's daily. Expect you know about the VitK2 MK7 - Magnesium & Zinc as co-factors. Also that VitD is fat soluble - some capsules include olive oil with the D - Healthy Origins.

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