Been on injections over 2 weeks, improving but very slowly - advice please

Hi I've been on methylcobalamin over 2 weeks (had 10 hydroxocobalamin doses before that but my GP stopped them as he thinks I'm crazy!). First week of methylcobalamin was hell, severe headaches and numbness on my face, vision problems, weakness in my legs. Started to feel better 4 or 5 days ago and feeling awful today. I have a headache (frontal) and numbness in my face. My legs are really weak. This is very distressing.

All this in between fighting with my GP who is prepared to risk my health and let me deteriorate despite my pleading.

I have had a letter from a haematologist who agrees with me 100% and has said I should be treated "long term" with B12 and my GP has not responded. I haven't even seen the haematologist and he has advised this. I am going to see my GP on Wednesday and dreading it. He has treated me abysmally and has no idea how ill I am.

I am concerned that I have had these symptoms for 3 months now and I was getting better but delays in treatment have meant that I could possibly not recovery fully due to incompetent doctors. The leg weakness is a real worry - I want to get back dancing and cycling but I can hardly walk up the stairs, never mind anything else.

I want to get back to work and start living again. I know this may take months of treatment but my GP does not get this. Today, I feel "weird" and exhausted. It is so scary.

Please advise.

19 Replies

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  • Can you not see another gp within your practice?

  • They are all pretty useless but I have been doing some digging and my mum has been in touch with patient support groups etc and they have said to complain if he doesn't treat me.

    I have re registered elsewhere and hopefully be at my new GP next week.

  • I don't understand why GP is sending you to a haematologist and then ignoring the advice!

    I agree with LisaHelen about asking for another GP. You could try writing or emailing first with research, BNF guidelines, etc., mentioning that you need to work and are unable to unless you receive more frequent treatment. Sometimes GPs need a reality check - my relative's GP (misdiagnosed ME and dementia) finally agreed to trial B12 when I persisted and finally said how distressed we were that she had to cope alone with her relatives so far away. Also putting your case in black and white is often effective as I'm told their biggest fear is being sued....

    b12deficiency.info/b12-writ... (Templates for writing)

  • He is ignoring their advice as he trusts the neurologist who said I was fine (this doctor didn't want to discuss PA and dismissed the guidelines as "just journal articles").

    They have been given all the guidelines and research and are just ignorant. I hadn't even been to see the haematologist but he agreed with me!

    D-day on Wed, if he doesn't treat me he will be in big trouble. I saw him 3 weeks ago and I was so distressed I was hysterical and said how could he just not treat me when I know what is wrong with me? He basically said I needed someone to talk to and that I had a mental health issue. Why on earth would I make all this stuff up? Loosing your sight and your mind is scary stuff!

    It is disgraceful how so-called doctors have this off their radar. There are guidelines for this, end of. Every single doctor needs to know about this and there is an obvious lack of understanding and awareness of this horrid disease. It I had been treated promptly then I would probably be fine now and back at work.

    I hope your relative is better x

  • I had a terrible time with methylcobalamin sublinguals, I developed worse numbness after taking them, I'm not entirely sure why. I take hydroxocobalamin now, it does seem to help my nerves and the side effects are milder.

    Some people do have reactions to methylcobalamin, I'm not sure why, and I'm not certain it's worth pushing through, but that is up to you.

  • Hi thanks I seemed better on hydroxocobalamin - I am seeing my GP on Wednesday and it's d-day. My poor mother is so stressed, but she has been asking for external help and been in touch with local patient support groups and got information on how to complain about GPs in the area. If he doesn't give me a prescription then he is in bother. I have had enough and want to get better. This GP has risked my health instead of following a specialist's advice.

    I read somewhere that methylcobalamin is better for nerve damage, though. I have burning feet, random pins and needles and leg weakness. The doctor who supplied it said that I am "reversing out" ie all the toxins are being cleared from my body and my signs and symptoms are coming out x 100 that's why I seem so awful. I get horrid headaches and facial numbness, also my eyesight seems to be effected. I am just sick of being so ill. I am usually very active and now can hardly walk 100 yards without being exhausted.

    Fingers crossed I get what I need from my GP or he's in big trouble.

    Thanks for your support.

  • Detox is often given as a reason for methylcobalamin side effects. As far as I can understand I believe that is only a theory. I have seen no convincing evidence. It's a claim often made by naturopaths.

    I had similar side effects on the methyl- facial numbness/tremor, migraines, tremors, palpitations/fast heart rate, burning neuropathy, vision changes (seeing dark swirls), also acne, confusion/cognitive decline, cramped muscles, spasms, anxiety, paranoia, worsening gastrointestinal and thyroid problems, etc. It was a bizarre and horrendous experience.

    Overall I got much worse on the methyl. Over a year later I'm still not myself.

    I am taking hydroxocobalamin for the neuropathy, and as long as I get enough, I feel improvement. So it's possible. Plus I am free of the anxiety, migraines, diarrhea, rashes, cystic acne, from the methyl.

    There are a lot of claims out there about which form of b12 is best. There are lots of conflicts of interest from naturopathic practicioners. I don't believe the research is there yet to say one way or another.

    So from my experience I've come to the conclusion that individual tolerance is a good guide. I'm skeptical about being made so much worse by a supplement, especially not knowing if it will ever get better again. For me it wasn't worth it. It caused too much damage.

    Now some people do tolerate methylcobalamin really well, but I'm not one.

    If you want advice I'd say try different types and see how you feel.

    The hydroxocobalamin I use is liquid from metabolics lab. It's the only hydroxo I could get my hands on, and is so far helpful. I do have side effects but they are not severe.

  • If you need to complain.....

    Apologies if I've given these links before to you...memory bad...

    england.nhs.uk/contact-us/c...

    nhs.uk/choiceintheNHS/.../c...

    b12deficiency.info/b12-writ...

    This website has a useful section on writing to your doctor with examples of how to phrase things.

    Your MP may be able to help. MPs websites will usually have a number to ring and a list of when the MP holds advice sessions.

    hdapatientcaretrust.com/

    020 7935 8366

    This charity can give second opinions on both diagnosis and treatment. I think people have to provide a full medical history.

  • Thanks Sleepybunny

    Yes you've posted links before, I am in Scotland and this is a devolved issue and my MSP is next to useless. I know my MP personally and she is brilliant but it is not something she can help with.

    My dear old mum who is 75 has spent a day ringing round and found out where I complain and get extra help regarding my GP.

    I have the other links saved and will use them if I need to.

    My memory is getting better as I am self treating now although still struggling with names and short term memory.

    Thanks again you're always so helpful...as are all my online friends x

  • What i would do (and have done) is have a calm meeting with your doctor on Wednesday if you get upset he will use it against you, if its refused ask why, take notes of what he says then if he refuses first write to the practice manager (this worked for my daughter and she got treatment) then if your not happy write or get in touch with PALS and if you get nowhere then complain at the next level, we really have to take charge of our health against incompetent doctor's and as someone said they dont want to think they may get sued. But stay calm,if he refuses just ask him to put everything he says in your notes he wont but he will also wonder why you want it there, also if you write to your doctor the letter has to go in your notes so i would write a short letter, address it ti him just put you require b12 treatment list your symptoms and hand it to him and ask for it ti gi on your notes when he hands it back to you (daughters doctor did) take it back, write on it that the doctor refused to take it then put it in envelope and hand it ti receptionist on way out and it will then go on your notes and you will have extra proof

    i wish my doctor would join this group and see just how useless they are good luck

  • Just looked up PALS...they only cover England so no good for me I'm in Scotland

  • Thanks yes I will keep a level head and them take things forward.

    He is not following guidelines nor the advice of the haematologist and the last letter I gave him I asked him to put in my notes for scanning (Scotland has a thing called Docman, where all hospital letters are put on the computer). He refused to do this and said he would put it "somewhere".

    My mum will be with me and it is decision time.

    I am on methylcobalamin but I am feeling very ropey on it and want to go back to hydroxocobalamin. I still have severe leg weakness, mild pins and needles and hand tremour. It is very unpleasant and it better not be permanent.

    What is PALS? Can you clarify...

    Thank you all x

  • This may be of no help but I have recently found that adding an iron supplement (spatone - easily absorbed) and magnesium (citrate) seems to have resolved a few issues which I was concerned the B12 wasn't sorting. Eg my headaches/migraine were longer lasting than usual and different. Since adding iron, I feel slightly less tired and 'weird' despite a stressful week. I can't say if this will work long term though. My ferritin was 'normal' but I looked it up & it was low 'normal' so probably not optimum for me. Taking folate as recommended seemed to make things worse. I also eat bananas as apparently it's possible to become low in potassium which I understand would cause weakness.

  • Sorry not sure if reply went through, sorry if replicating..

    I am already on ferrous fumerate as my ferritin is extremely low. What is the benefit do spatone? Heat about Floridix? The magnesium thing.. I am getting so overloaded with information that my head is exploding!

    I have also been supplementing with folic acid but I think I will stop that now as my folate was fine in the first place, maybe that is not helping. Do you take any folic acid at all?

    I eat a baba a day so not worried regarding potassium thanks

  • Spatone is sachets of iron rich water from a spa. You can buy boxes of individual sachets from a health food shop or most pharmacies. You add the contents of a sachet to a glass of water or fruit juice. The benefit for me is that I think it's more easily absorbed than a tablet & doesn't tend to cause stomach upset. Floradix is fine too.

    Magnesium* is often recommended for migraine, and lack of it can cause all sorts of symptoms like fatigue, weakness, cramps - some forms are more easily absorbed than others. I think there's a Floradix calcium/magnesium if you get on well with them, Saludynam.

    I find Victoria Health (online) a good source for supplements as there's a good selection and a good description of what they're for, ingredients, contraindications, and sometimes an editorial written by the pharmacist. Who will answer questions about products if you email/phone.

    I know what you mean about head exploding from all the info.! Unfortunately it is all quite complicated and can be somewhat different for each individual: one size doesn't fit all.

    *Too much magnesium can cause diarrhoea*

  • Hi. So sorry you're going through this: b12 deficiency is a hellishly scary experience: I've been through the worst and am coming slowly, but surely out the other side. Hundreds of hours of research have gone into my basically fixing this for myself and for my son (9 yrs old: seemed to be on the autistic spectrum, but these traits have now all but disappeared). This is my first post, but I've been reading on here for many months and want to thank everyone for adding to my understanding of this b****y awful condition. The reason I feel I have to answer this post is that the hypokalemia (low potassium) risk which goes along with ramping up methylation with methylcobalamin and/or adenosylcobalamin and/or methylfolate is very real and perhaps far more common than many realise. It has happened to me and to my mother. I have seen many references to this in various case studies and they warn about it on the Pernicious Anemia Society website. Also lots of discussion about it on Phoenix Rising. Am in a hurry right now, so don't have time to find the links, but can do so at some point. Anyway, symptoms of hypokalemia (which include all of the symptoms you've mentioned) can be felt by some individuals before their serum level gets to the accepted low normal value. And if you haven't even had your potassium levels checked, I strongly advise you to do so, because hypokalemia is dangerous, but so is taking extra potassium if you don't need it. If indeed you are low (or even lowish), you may just find that the methylcobalamin problems were basically due to potassium being yanked out of your blood and into your cells at too fast a rate when that extra b12 was supplied. All side effects of methylb12 disappear for me when I have enough potassium (and enough magnesium, without which you will find it hard to raise your potassium levels) My understanding is that this doesn't tend to happen with hydroxo, as the body has more control over how that is converted and used. Hope this had made sense: haven't expressed myself as well as I'd like to, but am in a hurry. Best of luck. All my sympathy.

  • Hi yes that would make sense. I have ordered hydroxocobalamin online from Germany but it will take a week or so to get here, meanwhile I will eat bananas! I think I will get my potassium retested, I will do it privately though all this is costing me a fortune.

    When you have time, can you DM me and let me know how you got better? My 7 year old is also showing symptoms of peripheral neuropathy and is her B12 is 234.

  • Are you taking folic acid? Folic acid is needed for B12 to metabolise.

    I increased my B12 injections to every other day and still felt awful. I then started taking folic acid; one per day of the pill normally supplied to pregnant women. I was amazed at the improvement. I started to notice the difference immediately and the improvement continued for sometime.

    I record my health on a daily basis using a crude numeric system which allows me to monitor my progress. I have a good doctor and at his request only make changes to my treatment regime at the beginning of each month and only make one change per month. It requires patience but does mean we can both clearly see what works and what doesn't.

  • Hi yes my folate was within normal range but someone suggested taking 5mg a day as this was what was required I just wonder if this is way too much so I have laid off it.

    I have an appointment with my GP today but I am not holding my breath.

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