I’m after some much needed help! I have very low B12 levels over the past 6 months - readings 151.
My doctor gave me a course of 5 loading dose injections over 2 weeks - Hydroxocobalamin but this hasn’t seemed to help me much & my symptoms seemed to have flared up even more since I had them. My next injection is due in about 4 weeks but to be honest Im frightened to have it, as I had severe insomnia and Rosacea flare ups from the last time.
My question really is about Methylocobalamin, I have read that this is much better than the other forms of B12 but I cannot find anywhere to purchase this in the UK. I have heard it can be imported from Germany, does anyone know if this is legal and if so, do you need to have a prescription? It would be really helpful if someone knew of a place in the UK instead?
I am waiting to see a gastroenterologist as my GP thinks that I may have the B12 problem due to my gastritis, so I don’t think taking Methylocobalamin orally is an option for me.
The other question that I’m not sure if anyone can really give me a proper answer to is initially I had a low B12 over 6 years ago - level 127 but was only given 1 injection at the time but received no more from my GP back then. Is there a possibility that I don’t feel any better as I was left for so long with no proper treatment? Also if this is the case should my GP have given more injections at the time?
A bit of history about me, I have been really poorly for over 5 years. Symptoms are pretty much all of what you get from having pernicious Anaemia & autoimmune disorders. I currently know that I also have a severe vitamin D deficiency and quite a low Iron count. I have also just recently had a problem with my Oestradiol levels, which went extremely low but since I had the loading doses have increased a bit. My GP says that this could well have been because of my B12 being low.
I would like to hear back from anyone else who may have experienced this as well? I’m concerned as I’m only 35 & not pre-menopausal, so really don’t know why this happened and don’t want my levels to go back down again.
I would appreciate any help & advice. Thank you.
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Daisy54
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Hi Daisy54 do you know what your Folate level was before the injections and are you supplementing with folic acid as this helps to process the B12?
Symptoms do sometimes appear to get worse once treatment has begun and the B12 starts repairing the damage.
I'm not a medically qualified person but there are others on here who do self inject with methylcobamalin sourced from abroad and hopefully they will be able to advise you.
My folate level was 10 before the injections & I have taken no folic acid at all since having them. Do you know how much folic acid I need to take?
I have read so many different things on-line about B12 deficiency, I have become a bit overwhelmed by it. This is why I joined this site, as I thought emailing out direct to people who are suffering from the same thing as me would be much better than going on website after website.
My GP is going to retest my B12 & folate levels again in a couple of weeks, so it will be interesting to see what my levels will now be.
Hi Daisy54 personally I take 1 – Folic Acid 400μg tablet every day and have done for more years than I can remember and that is in addition to what my breakfast cereals of All Bran and Grape Nuts are already fortified with.
However as your doctor is going to test your Folate levels best wait for the result and let him/her prescribe what you need.
If you have a diagnosis of P.A. then you should be having B12 injections every 8 weeks according to the B.N.F. Guidelines per the below:
"The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months".
I cannot help you with regard to your adverse reaction to hydroxocobamalin except to to say that when I was put on it in the 1980s (after 15 years on cyanocobamalin every 4 weeks since 1972) I too had an allergic reaction and went back to the cyano for ever since. Perhaps you could ask to try the cyanocobamalin - it would do you no harm but it would mean having it once a month.
Thank you for all this information. I will wait to see what my folate level comes out at & take it from there. It sounds like I may well need to change the B12 injection type I have been having! All the best.
Hi Daisy54 - your ferritin will need to be midrange or higher to help your body process the B12 as well as having good folate levels as clivealive suggests. I found that I required daily B12 injections for a number of months in order to feel "normal" and sourced them from Germany. It is possible to get Methyl from Germany but it's much more expensive and harder to source so it may be prudent to make sure folate and ferritin are up to scratch before considering spending out considerably more for methyl. Just my 2p worth
As for long term low levels, yes this mean that the damage takes considerably longer to heal. You may want to read "Could it be B12?" by Sally M. Pacholok and Jeffrey J. Stuart as this contains a wealth of information on B12 deficiency.
I have just ordered the book. My ferritin levels was last checked in August last year and are just under midrange. I also had my iron levels checked last week, which came back quite low, so it sounds like I need to give them a bit of a boast to!
You have mentioned that you found that you required daily B12 injections for a number of months to feel normal. I hope that you don't mind me asking you but how often did you have the injections? The reason I ask is I'm reading so many different answers to this, I'm so lost with what I need to do?
Hi Daisy54 - I don't mind you asking at all! Everyone is different and I was initially quite downhearted that I needed them so often at the start when others seemed to manage on weekly or monthly injections. It took about 3 months for me giving myself daily injections before I was able to ease off. For me, I find that when my folate or iron levels drop, the B12 doesn't work as well. It's taken me just over a year of trial and error with thyroid meds, vitamin D, B12, folate, ferritin, magnesium and probiotics to find out what works for me but I've got very good at listening to what my body is telling me, although I do still have occasional days where I appear to be deaf to it ;(
On the whole, I'm pretty much back to being functional now and have been able to start my exercise program back up again but it's been a slog.
It's very confusing at first! Many people need more than the once every three months injection. And everyone is different-it takes some experimentation to find the right dose as it is a very individual thing.
I'm in the US and was given cyanocobalamin once a month for a year, which did nothing for me. Cyano is what is given in the US, not hydroxo. I still had all my nuerological issues, was fatigued and dizzy.
I chose to go to a Naturopathic doctor who started me on methyl, which did the trick! ☺
I started out getting one injection every three weeks but we had to keep increasing the frequency to finally I am injecting every other day. I was getting injections in her office at first, but now she writes me a prescription, I order syringes and needles from Amazon and my husband injects me.
I am hoping that the last of my neuro symptoms (tinnitus & pins and needles in hands) will go away so that I can cut back on such frequent injections.
Everyone responds differently to the different forms of B12. Clivealive does really well on the cyanocobalamin, others on hydroxo or methyl.
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