I'm a 24 year old girl that just got diagnosed in November (I'm also coeliac and have autoimmune hypothyroidism, so an autoimmune hat trick!). I've had basically no support at all from my GP, in fact I had to look up the guidelines myself to tell her the treatment I need over the phone (luckily I'm a med student myself). I haven't even seen my doctor in person about it, just saw the nurse once for my first injection then began just picking up prescriptions and needles and injecting myself.
Basically guidelines say that I need B12 injections every 3 months for the rest of my life, however, I've been finding that I've been getting symptoms a lot earlier than that, between 2 months and 10 weeks. I get sores in the corners of my mouth (angular cheilitis), I get that exhaustion that's so paralysing and start to feel faint, especially in the morning. Literally a couple of days after I inject myself the sores have healed and I feel more like myself again.
Does anyone else have this problem? Is it ok to inject myself more regularly? Should my doctor be following up my B12 levels or should I just go by the symptoms I'm having? I have to say the sores at the corners of my lips is the worst part, looking in the mirror and seeing such a visible sign of a disease is pretty psychologically painful to me, as stupid as that might sound.
Thank you in advance for any advice you might have x
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Emrose91
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Oh yes! There are a lot of people who find three months far too long an interval between injections. Some have enlightened GPs who prescribe more frequent injections, others resort to self-injection.
Is it OK to inject myself more regularly?
Yes. Because B12 is water soluble it gets flushed by the kidneys quite efficiently. Also, the doses you'd be taking are nowhere near as high as those used for treatment of cyanide poisoning. Some people here are injecting 1mg daily.
Should my doctor be following my B12 levels?
The recommendation is that monitoring B12 in the blood is fairly pointless once supplementation starts. It's much more sensible to treat symptoms than numbers.
There's a list of answers to such questions, with links to the sources, here - frankhollis.com/temp/Summar... I would recommend reading through the linked articles.
I'm in the US, so I get methylcobalamin B12 injections. I started out every 3 weeks, then 2 weeks, and then once a week which seemed to be the correct dosage for me. However, I started exercising regularly ( b/c I finally had enough energy again from the B12!) But am finding that water aerobics 2-4 times a week drains my B12. So now it's every 3-5 days that I self inject.
That seems like an awful lot of B12, but a lot of my symptoms come back if I don't inject that often such as fatigue, balance problems, dizziness, burning toes, tingling arms and hands, tinnitus, to name the worst symptoms.
So many people on this site have the same problem-they need B12 much more frequently than the doctors are usually willing to give.
Luckily, I have a doctor who understands about B12. My heart goes out to all those who have to get by with less than they need.
fbirder is very knowledgeable about PA, so the info in the reply to you is totally right on!
Everything that fbirder has said below and although it is scant comfort, you are certainly "not alone" and sadly it seems at the moment that you are suffering somewhat and not getting the support you need.
I am not medically qualified to give advice but there are others on this forum who can - so keep in touch.
I too was only in my (late) twenties when I was diagnosed although I'm sure it had developed much earlier due to gastric surgery ten years prior to it being confirmed, however, there is life after P.A. as I'm still "clivealive" coming up to 75.
I wish you well in your studies and for your future.
My understanding is that the BNF recommends that people with b12 deficiency and neuro symptoms should receive extended loading doses and then injections every 2 months. Page 29 in the BCSH Cobalamin and Folate Guidelines mentions treatment I think.
To be honest I've yet to come across anyone who does manage to get to the full 3 months.
There seems to be no real scientific evidence for 3 months.
When UK started using hydroxo it was monthly. Then in the 1960s a study showed that on average people retain hydroxo twice as long as cyano but the studies also clearly stated that this couldn't be applied as a generalisation as there were significant numbers of people who retained cyano longer than hydroxo. Nevertheless around that time the frequency became two monthly and then in the 1980s for no scientific reason anyone has ever been able to trot out it became 3 months. There is some interesting info on it on this site though I'm not sure of the exact link.
The serum B12 test is not a specific test in looking at B12 deficiency as it looks at levels in blood for all forms of B12. B12 has to be processed into active forms and transported to the cells where it is used and things can go wrong with both of these processes. It is perfectly possible to have high serum levels and still be functionally deficient at the cell level.
The only possible justification for monitoring after treatment starts is if there is a suspicion that levels are low, ie that your kidneys are very efficient in getting rid of B12. High levels at this point mean nothing and treatment should really be on basis of symptoms. However, guidelines on this one are pretty useless to be honest.
I treat myself because my symptoms come back within 24 hours if I don't. There's even some evidence out there that IM injections are not the best way to go for some people as they kick off an autoimmune response that shuts down the transport mechanism ... something that seems to fit with treatment regimes in my own family.
So, B12 a lot more complex than just levels in blood.
Unlike some other substances (and leaving aside the issue of the autoimmune response mentioned in the previous paragraph) there are no upper limits for B12 intake. There is a correlation with higher levels of cancer and larger tumours but that's a correlation and no causal link has been identified ... and it's quite probable that the causal link is actually the period of B12 deficiency before supplementation started and then the B12 unfortunately promotes some growth in unhealthy cells as well as healthy cells explaining the larger tumours.
Hydroxo cobalamin is the treatment for cyanide poisoning - administered at the rate of 5g (ie 5000 times a normal shot) intravenously over 5 minutes with a second dose after 30 minutes if necessary. You are going to have to work very hard to get your treatment anywhere near that level!
Can you enlighten us at all re your comment regarding I'M injections not being the best way to go. I have been on 3 monthly then 2 monthly IM and now self injecting every other day and my neuro symptoms are not improving at all. Any suggestions?
refer to discussion p4 around effect of intensity of initial dosing where body reacts by producing antibodies to TCII that results in cobalamin being retained in blood rather thqn being made available to cells
Very interesting paper. Since I had alternate days loading doses it seems that increases the risk of developing antibodies to transcobalamin II to nearly 50%!
I have had several occasions where despite lots of B12 (daily 1.5 mg hydroxocobalamin and sublingual methylcobalamin) my symptoms return and each time I have found I have become deficient in something needed to metabolise the B12, i.e. it is getting into my blood but not into the cells where it is needed.
I'm still experimenting but at the moment I need extra high levels of additional multivitamin and mineral supplement, potassium, magnesium and folate. I have swapped some of the folic acid I was taking for methylfolate and this appears to be better: I increased it yesterday and had less stinging in my shoulder (although I haven't been on it long enough to to take it out again to see if I get worse without it so can't say for sure).
I know I shouldn't try more than one thing at a time but I'm desperate to be better again so I have also added in some iron bisglysinate and so this too may have helped - in time I will also trial a time without this to see if I need it.
These are only my personal experiences and I advise caution if doing trials on yourself but know that some of the route to improvement is by working out what works for you.
Options open to you now to help yourself are to consider sublingual tablets or spray of B12 daily to supplement the injections; if you have any neurological symptoms (autonomic neuropathy can be caused by B12 deficiency causing low blood pressure and fainting) you might be able to persuade your GP to increase dose to 2 monthly (or even monthly, if you are lucky); some consider self injection using supplies available from German pharmacies or amazon.de. Make an appointment with your GP after you have researched this and take someone with you to give support.
You also need to consider if your other B vitamins are OK- folate in particular works closely with B12, so if you are folate deficient (which is possible with celiac disease) then you will not be able to use B12 to best effect.
I take 5mg methylcobalamin sublingual daily and a good B complex- 50 around the time of my hydroxocobalamin injections. Jarrow, Thorne and Solgar seem to be recommended by most people, so are the ones I have tried. I also carry B12 Better You boost spray in my bag.
It might be cold comfort now, but knowing how B12 deficiency impacts on people and the lack of understanding among most health professionals will actually make you a better doctor. You will look out for this in your patients and make sure it is treated properly in the future.
I wish you all the very best with getting yourself better. This is your health, so you will have to be proactive as there is a complete lack of understanding and dismissive attitude by most people.
Thank you so much for all of your help, suggestions and kind words, I'll get on to my GP to start increasing my injections. The resources you've suggested will be extremely useful in making my case for it I'm sure.
One of my main worries at the time I was diagnosed was the fact I had started to get symptoms of sensory peripheral neuropathy with pins and needles in my fingers and feet that would come and go, so I asked for my B12 to be checked. My blood pressure was also on the floor and I was fainting on ward rounds. So I certainly had started to get neurological involvement. The pins and needles have improved significantly thankfully, but I'm keen to prevent them from coming back!
Hi Emrose, I think everyone else has given you really good advice and I can't add much to it. The only thing I would say is, my GP was amenable to my having a trial of more frequent injections. She agreed to this without any problem, and when I reported back how much better I was feeling, she agreed to continue these more frequent injections indefinitely. So I am now having an injection every six weeks.
i know how you feel regarding the lack of support from your g.p,the times i had to keep telling him that i knew when my body was telling me it was ready for my b12 shots,around 8 to 9 weeks,but because of the guidelines he had to adhere to,he didnt think it neccessary,as the 12 weekly shots were considered sufficient,and my blood tests for b12,iron,folic acid had stabilised and were acceptable,but i challenged him on this as my bloods were always done a week or two after having my b12 shots,i then asked for him to do blood test again at around 9 weeks after my b12 injections,explaining that around this time i knew i was ready,after a few deliberations he agreed to do so,and guess what,i was correct and he conceded that i did need b12 more frequently and apologised for what amounted to basically not listening to what i was telling him and putting me through unessessary suffering that was avoidable,i told him i hadnt been going to see him about this just for the fun of it but he tried to explain that there are guidelines about how frequently b12 injections are to be administered,but as i informed him and proved to him that all of us that suffer with b12 deficiency and p.a are different as to how often we require our b12 injections and should be treated accordingly,this is the ignorance that we have to endure and that makes it worse,its bad enough us all having to suffer with this as im sure everyone on these pages will attest to,but to have to more or less beg to be heard is upsetting,frustrating and an ordeal itself,yes i got heard and yes i was correct in what i was trying to get through to him but its the lack of understanding from him him that made things far worse for me,i dont ask to see him anymore due to the way i was viewed by him,but i like to think that he actually learnt something from me regarding b12 deficiency and p.a,i hope so,i now see a lady doctor at my local surgery who is actually fantastic,sympathetic and makes me feel like she cares and she always makes sure to keep up to date with blood tests to monitor my levels,ive actually mentioned self administering but shes against that at present,i trust her judgement so will go with that,if you can get a doctor that will listen to you and your opinions and actually care enough to want to help,that in itself goes a long way to making us feel that were being taken seriously and theres help at hand,i hope things go ok for you as it eventually turned out for me,and if you dont think youre g.p is taking you seriously you may be better off asking to see a different doctor at your practice who may be more willing to take you seriously,it worked for me.all the best...fenty.
Retren my advice to you is find someone who knows what they are doing one Secondly someone who gives you support and listens to you.I t is simply not good enough for a physician to rely upon the expertise of a patient.gilltall@icloud.com
People are very individual in their responses to B12.
I think in Martyn Hooper's latest book he mentions people who are fine on the standard every 3 months NHS treatment and also people who self treat with a lot more ..even daily doses.
UK 3 monthly regime
This blog has an interesting article on how the UK came to have an every three months regime.
Have you read about different froms of B12 eg cyanocobalamin, methylcobalamin, hydroxycobalamin and adenosylcobalamin. I have read that some people respond better to one particular form. Some people on this forum have mentioned they use more than one form.
MTHFR gene
Have you read about MTHFR gene mutations?
Neuro Symptoms
"I had started to get symptoms of sensory peripheral neuropathy with pins and needles "
Pins and needles would normally be considered to be a neurological symptom. Did you have any other neurological symptoms when you were first diagnosed?
How many loading doses did you get?
My understanding is that loading doses for those with B12 deficiency and neuro symptoms should continue until symptoms stop improving. I guess in practice, that this could mean loading doses that continue for weeks even months as long as a person continues to improve. I believe that the BCSH Cobalamin guidelines mention a possible review after 3 weeks of loading doses for those with neuro symptoms. Sadly some people do not get these extended loading doses. It happened to me.
Writing to GP
This link has useful ideas for writing to Gp if unhappy with treatment. One of the sections is "1. Neurological symptoms - suffering from under treatment "
Office open every day from 8am till 2pm except Sundays. If you leave a message they will normally respond within a few days.
Copies of Blood tests
I get copies of all my blood tests especially folate, ferritin , full blood count, b12 and track changes . Have you had a recent FBC (full Blood Count)? High MCV and high MCH can indicate the possibility of macrocytosis. I have read that macrocytosis can be masked in someone who also has low iron. Have you ever had a blood film aka blood smear?
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