I’m new to my b12 journey, really I’m very lost in it all! I had a lot of symptoms - hair loss, severe palpitations but honestly primarily exhaustion.
I had a set of bloods done and they came back with b12 of 107. GP didn’t articulate much at this point but instructed me to start the 6 loading doses every other day for 2 weeks. I’m 2 doses in so far and I am feeling dreadful. Pins and needles - totally wired… but also a lot of pain, skin and muscles feels so so sensitive. Also got a dreadful upset tummy.
The nurse has asked my GP what the long term plan is and he’s asked to see me because apparently at 34 my levels shouldn’t be this low - I guess maybe he will try to ascertain why this has happened. My guess is PA and I gather there is a blood test for this?
I guess really my question is - is this level of intolerance normal and should I be concerned about how awful I feel or just suck it up? I’ve felt so rotten for so long I’m not sure I imagined that I’d feel so much worse before hopefully being better?
Any guidance welcome!
Thank you for reading x
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sophie89
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Often we feel worse before feeling better as we need time to heal from the damage caused by the deficeincy. I also had the upset stomach but hopefully this will soon pass.
Lets hope your Gp has a good understanding of the condition.
Other's will advise and give you further information.
stick with it. You often feel worse before feeling better. And don’t forget you need to keep having the loading doses ‘until there is no further improvement‘ as per NICE guidelines . Insist on continuing the injections until you stop improving.
In order to raise your body's tolerance it's required to take b12 in other ways along with loading dose. Sustained release b12 or liquid b12 or nasal spray. Sublingual may have bad effects on some people. Through oral nearly 10 percent get absorbed. So mega dose of oral way is required to cancel out intolerance. Cyano form in oral way has some problems get absorbed so methyl is better option. You need to check ferritin, magnesium too. Normally ferritin should be kept between 45 and 75 in order to get rid of most of body ache. Without b12 ferritin can't get raised. At the beginning of loading dose you need to take potassium rich foods like banana and watermelon or orange juice. Most of the time d3 also is low in P.A patients so you need to check your d3 too. You need to take at least 200 mcg activated b9 as it is required in methylation process of ATP synthesis along with b12 and since it can't get reserved in our body we need to take it everyday but in lowest amount. This guideline helped my symptoms get improved. Still I'm struggling with many symptoms but I'm getting better on daily basis.
It is possible that those with pernicious anaemia MAY be able to passively absorb 1% of a large oral daily dose.
The BCSH (haematologist) UK guidelines warn that:
"....the efficacy and cost-effectiveness of oral treatment in wider population-based settings has yet to be established. There are arguments against the use of oral cobalamin in initiation of cobalamin therapy in severely deficient individuals who have poor absorption, especially due to pernicious anaemia."
These are findings by Martyn Hooper MBE (founder of the Pernicious Anaemia Society) from discussions with medical experts and researchers - and published in his book What You Need To Know About Pernicious Anaemia & Vitamin B12 Deficiency.
sophie89 -
I found nasal spray, used as a "top-up" because symptoms did not improve with B12 injections, completely ineffective for me. But we are all different .
I don't have a pernicious anaemia diagnosis. I had B12 deficiency which was treated with the usual frequency of injections, continued to get worse, then was found by MMA test to have functional B12 deficiency. The B12 just wasn't getting to cell/tissue level in amount required, so I was given 2 injections a week for 6 months.
PA can be diagnosed by a positive IFab (intrinsic factor antibody) test result, but this is not a "PA test" because as Nackapan said, it will only find 50% of those with PA - so a "half-PA test" would be more accurate !
Martyn Hooper had to have three IFab tests before getting a positive result - some GPs are unaware that there are any problems with believing the first result, however - which if negative, could result in a GP mistakenly stopping B12 injections for a PA patient.
It might be worth reading his book to get a better understanding of what is going on and why. It appears to be quite common to get worse before better, and can take a while.
Hi Sophie, hang on in there. Politely ask your doctor for Folate blood tests. It’s important to make sure this is top of range as it’s helps you metabolise B12 properly. You can buy them over the counter. I didn’t do this when I had my loading doses because at the time I didn’t know. It takes time for B12 to repair everything so be patient. Also ask your GP for an iron panel to check ferritin etc levels and a full blood count . I had really bad palps and all sorts of symptoms. It does get better with time . Do you eat meat and dairy ? Like others have said , go for the Intrinsic factor antibodies blood test but ask for it to be done when you haven’t had B12 for two weeks. If positive ensure you get a copy of results and ask for it to be put on your notes that you have PA. But a negative doesn’t rule out PA . Frustrating but stick with the B12 your body needs it. Good luck with it all and above all read all you can about PA , it does help
so I did have a pretty full panel which was what highlighted the b12 score. My serum ferritin was 24 - my folate was 11.4 - not sure on the significance of this whether it’s good bad or otherwise😂 I feel like I’ve got a lot to learn!! Thank you for your advice x
I was 106 and experienced the same as you. I couldn’t get out of bed as the pain in my body was so bad but the specialist said when you have been so deficient, the body kick starting with the B12 it needs is painful. These are what are known as “reversing symptoms” where it gets worse before it gets better. For me I felt like I had popping candy in my body and head and it hurt! I found ibuprofen and paracetamol helped during the loading doses.
Keep a diary of symptoms, treatment and activity so you can look back as it’s so easy to lose sight of progress or a decline indicating you need more frequent b12.
I was diagnosed 8 months ago and now inject every day and I am still on the path of trying to find a possible cause or causes.
I hope you feel better soon. Big hug and try to keep warm and rest as much as possible. 🤗🤗🤗
Hang in there. I also had palpitations and developed pins and needles once on the injections. Like everyone says the b12 seems to wake up every nerve in your body that’s been deficient for so long. It gets worse but then all of a sudden you will notice that those palpitations subside and so do the pins and needles etc. Hang in there!
Sounds horrible. Not sure if it helps, or is relevant, but I had really bad palpitations immediately after the loading doses. During them, I felt a lot better for about three days, but then everything came back as soon as they finished. I've had just one 'normal dose' since, the nurse agreeing to do it after two months although the GP was saying three. Clearly, the GPs know little about the condition. Unfortunately, overall my symptoms are a bit worse. I get the palpitations, bad nausea especially in the morning, my skin is so itchy and very flaky (lovely), and I get a lot of pain in my legs. Like you, I am exhausted for much of the day, especially if I do something, even light, like driving for more than half an hour, or cooking. For me it is the neurological side that is most alarming. My memory is really, really bad, and I am confused, anxious and suffer from brain fog for long parts of the day. He has asked for a consultation with the gastrology department at my local hospital, but they say I 'might' hear by June. In the end, I've seized the baton and arranged to see someone privately (although I can't afford it, because I can't do much work due to the condition, and don't really agree with going private, but there seems like no alternative and the condition is so horrible, painful and uncomfortable, mentally and physically, that I have to do something. I've had a heart attack and suffer from diabetes, but neither are as bad as this.
Which isn't very encouraging, I know, and might well not be the route you endure; everyone seems to react slightly differently. I suppose what I am saying is absolutely insist your GP refers you, but they might not, and if you can, look at seeing someone privately.
oh BleekerStreet you brought tears to my eyes as you describe your situation so eloquently and it is so sad to read.
I was in a pretty bad state too and after my loading doses and told I had to wait three months for my next which I couldn’t as I couldn’t even get out of bed. I even found going to the loo an exhausting experience!
I went private and I began self injecting every other day but I didn’t like the low mood and foggy brain feelings on the non B12 day so I now inject every day and I feel so much better. Perhaps self injecting is the route to consider?
Big hug and I hope the sun is shining wherever you are. It is here! 🤗🤗🤗
yeah there’s no reason for your b12 to be that low unless you are either a strict vegan or have PA. I would make sure to get tests for both intrinsic factor antibodies and parietal cell antibodies because both types can indicate PA. At first my dr only gave me the intrinsic factor antibody test and it was negative so he assumed I didn’t have PA but I actually did, and my parietal cell antibodies were positive when I was later tested for it. And if you have positive parietal cell antibodies you’ll want to see a GI doc so they can check for atrophic autoimmune gastritis, which is a condition involving pernicious anemia and parietal cell antibodies.
If you have neurological symptoms such as pins and needles, I would expect you to be on the treatment pattern for those with neurological involvement mentioned in link below.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
There's a lot of info so maybe read a little bit every day over a week or so.
Some links may have details that could be upsetting.
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