Increased symptoms after injections.

[Suesue246]

I'm still trying to get my head around everything and I have a memory like a sieve regarding what I've read to date...I always have had so that's not necessarily due to the P.A. So after 18 years of 10 weekly injections I have now had one a week so far for the last 4 weeks as advised by a consultant. Yesterday I started getting pain in my elbow and my pins and needles/buzzing sensations which started a few months ago have got so much stronger.

I'm struggling hugely with back, hip and hand pain which has been going on a long time. I'm wondering if the addition of the elbow pain and increased pins and needles could be "reversing out" after just 4 additional injections over the course of a month? In all the years I was on 10 weekly I never noticed any difference good or bad.

(Consultant has said he will refer me to rheumatologist if the aches are the same in May and the g.p. has said she will add something to my blood tests in May to see if the aches are "autoimmune".)

Also is there anyone here who has recovered from aches through increased B12? Many thanks.

[Myoldcat]

I'm much less experienced than others here, but if you've had new onset neurological symptoms in recent months - like the pins and needles - it would seem your 3 monthly injections haven't been enough. So it wouldn't be unreasonable to think that upping the frequency even after so long on B12 injections could result in reversing out symptoms... they can be a struggle. Re aches, I have lots of aches in lower back, hips and knees. After 2.5 months of loading doses and now twice weekly injections I'm noticing I still have aches, but they are in a different place every day... right knee, left hip, lower back, left knee! So it feels as though it may have been more nerve pain than actual joint pain all along? Let's hope we see improvement!

[Suesue246 in reply to Myoldcat]

Thank you. It's so confusing.

[B12life]

by 10 weekly do you mean 10 a week? Or 10 injections once a week?

[Suesue246 in reply to B12life]

I was having one every 10 weeks since 2005.

[B12life]

what was your b12 level before any injections

[Suesue246 in reply to B12life]

I have no idea what my levels were in 2005 other than low. Subsequently tested positive to gastric parietal antibodies and intrinsic factor. Last November it was retested in a series of blood tests despite me telling them not to measure B12 and then it was 899ng/L.

[B12life in reply to Suesue246]

I would suggest daily injections. It will take time to see significant results but that's what I had to do and still do after 3.5 years now.

[Suesue246 in reply to B12life]

Can I ask did you have aches and did it lead to good improvements?

[B12life in reply to Suesue246]

I had severe back pain, sciatica and tingling in hand and foot on my right side.

All this comes back when I stop injecting.

Went away after 1.5 years of Daily injections. Through that time there was gradual but noticeable improvement. I could tell it was working but was told it would take time.

After starting daily injections, about a month i got extreme aches all throughout my body all the way to the bone. Felt like I was dying. The pain was radiating and intense; however this happens because the b12 is necessary for cell generation. Our body regenerates cells every 120 days. When deprived that process is stifled. Nerve and brain cell generation hindered. Now that the body has b12 it's like the cells are all coming alive at once so you get pain from that. But it lasts about a month and then goes away. It's normal. This is what people mean when they say it gets worse before it gets better.

Now this is different than an allergic reaction which I have never had.

If what I described is what you are feeling, the best thing to do is keep injecting.

to this date, I must inject daily and twice daily if I exercise excessively.

Everyone is different, if I back off I go back off, the symptoms return.

I'm about to post my recent experience where I depleted my b12 and how I felt and how I recovered.

[Marz]

Low VitD could be a factor when dealing with aches and pains. Also Low thyroid levels....

[Suesue246 in reply to Marz]

Thank you. The consultant who put me on once a week injections recently has also put me on Vit D with K2 and i have added magnesium myself. It would be wonderful if this was helpful. I have wondered about thyroid also. The g.p. did TSH in November which came out as 1.4 mu/L which was normal. I've read that other tests should be done for thyroid and don't know whether to get private bloods done. It's such a lot to try and work out.

[Marz in reply to Suesue246]

Agree - it is so much to work through. Your TSH looks fine but that's a Pituitary signalling hormone ! - but yes FT4 , FT3 should also be tested along with antibodies TPO & Tg.

VitD is fat soluble so taking a VitD gel capsule containing olive oil can be helpful. Do you know your D result ? Dosing based on results is good.

grassrootshealth.net

There are many on-line testing companies. Monitor My Health is a NHS lab providing private testing for Thyroid along with vitamin and minerals..

[Suesue246 in reply to Marz]

Thank you. I don't know my Vitamin D levels currently as they weren't done in November but historically they've been low then supplemented. They will be done in May though. I think I will book the thyroid tests, but not quite yet as I'm overwhelmed. Thank you again.

[Hockey_player]

Maybe try a chiropractor as well? Not everything is B12. You can have those symptoms if your neck or spine is out of alignment.

[Suesue246 in reply to Hockey_player]

Thank you. I have been thinking maybe I could try a local osteopath. I tried physio including targeted exercises at a health gym. I'm not convinced my symptoms are necessarily all to do with my P.A. as for so many years it's been digestive issues that have plagued me but I was fine movement and pain wise till 2 and a half years ago.