I had an appointment with my GP today to discuss continuation of the B12 injections as per the guidelines for B12 deficiency with neurological symptoms. He has now prescribed 3 injections weekly till symptoms stop improving.
I can't thank enough the Pernicious Anaemia society and the B12 deficiency support group, as well as this forum for your help and support. I am sure the informative leaflets and the guidance on how to write the letter have made all the difference. I would not have made it without you.
I have not had an official diagnosis but for now I don't mind. I am thrilled to be able to have the treatment.
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VickyB12
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Just pleased to have been able to point you in the right direction VickyB12 .
I'm not a medically qualified person but I understand that it is important to have a healthy Folate level when you start having the injections as this is essential to process the B12.
The only (unqualified) advice I can proffer is to ensure that your Folate level is healthy whilst you are injecting B12.
Personally I take 1 – Folic Acid 400μg tablet every day as I have B12 injections every three weeks.
Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, lima beans, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, lima beans, salmon, orange juice, avocado, and milk. In addition, some cereal products are fortified with folic acid.
Hi VickyB12. This is fantastic news and it's so good to hear of a GP who finally listens. So well done for persevering 😀.
Just make sure that until no further improvement means until you think there's no further improvement. Then B12 every eight weeks (for some, that's not enough - but that's another story).
And your GP should not stop your B12 if he thinks your levels are too high - this would be a nonsense so pop back for more advice if that happens - but hopefully, it won't 😀.
It's worth mentioning that if your neurological symptoms fail to improve, then your GP should refer you to a neurologist just to rule out any other potential causes - but again, hopefully that won't be necessary (but forewarned is forearmed).
Again, really delighted for you and hope you'll see real health benefits very soon.
Pop back and let us know how it goes and further support and help here if needed.
Thank you Foggyme...yes, he did say that if the neurological symptoms persist, he will refer me to a neurologist. As you say hopefully it won't be necessary. Keeping my fingers crossed that this problem will be solved soon. the neurological symptoms started last January and it is now November! I will keep in touch and I will try to help others if I can... x
Hope you don't mind me asking, what neurological symptoms was you suffering from ? I have B12 def and been told will have to have injections every 3 months, this has been something I've been suffering for over 15yrs. Being told this at 16 I wasn't really aware of how it can affect you, now 34 I'm fully aware and trying to get this all sorted. Thank you x
Good morning Jaylou8, of course I don't mind you asking.. I am afraid I still have neurological symptoms but after the injections I feel a bit better.. there is a slight improvement every time I have one injection. It's like a miracle. What drove me to the gp last January was pins and needles in my left arm, numbness and terrible pain. I thought I had probably pulled a muscle! It became worse in the next months because the GP dismissed my B12 deficiency and advised me to have food rich in B12... according to her, it would solve the problem.... which of course it didn't. Unfortunately my neurological symptoms were not linked to B12 deficiency. Also, before the diagnosis I had migrainous headaches very often...almost every week! I am off to work now but I will post later some links about neurological symptoms and I hope this will help you. x
I would just add to these excellent remarks that keeping a log might help - not all doctors are receptive to this, but it can still be helpful to show some "evidence". I've noticed with myself that some symptoms seem to go up and down, and with a foggy brain, having a written account is certainly helpful. I've made an excel sheet of my main issues and score them daily on a scale of 1-10. I also left some space for some comments (e.g. left hand numbness same, but right hand better, etc).
Edit: Also, very pleased to hear you stuck up for yourself and will get the correct treatment!
It is utterly amazing as to the different levels of care and treatment across the uk, I did exactly the same as you have done, I know that my letter was a good one, it took me 2 days to prepare it, it was proof read by Tracey Witty at b12def, inside the hard copy was all the relevant documents, I also emailed this with all the relevant live links to make it easy for reference.......what happened, he has declined any further injections based upon high serum b12 levels.....not just once...twice.
I have referred myself to a Neurologist who has said that he will do whatever tests that I want to have done, significantly he commented that no one should be practicing outside the NICE guidelines.....well my gp thinks it is ok to do this.
Good luck with your treatment Vicky and I wish you a speedy recovery, you are one of the lucky few to have an understanding gp who cares about your health and is not governed purely by blood results.....maybe I should move into your area lol.
Thank you KenBowns... to be honest, I couldn't believe my ears when he said that it would be OK to have the injections after testing my neurological symptoms. I am so much aware of the problems people face and it took me almost a year to sort this out...in fact, I need to be saying 4 years because in 2012 my B12 was 190 and no treatment was given because there were no haematological changes and no investigation was done to find why my B12 was low. The only thing they said it is that as I am a Hashimoto patient, I can have my B12 tested every 2 years. I had and they always said it was Normal. Little did I know then and I never asked the surgery to give me printed results. The next thing I know is that last January my B12 was 160 and I had neurological symptoms.
You say your B12 is high? perhaps it would be worth having the Active B12 test at guysandstthomas.nhs.uk/Home.... If you don't live in London, I think they offer this test as a home kit. I have read about this test in this forum and it was the next thing to do if my appointment with my GP was not successful. I am sure one of the members said that he managed to have more injections based on the result of this test. (sorry I can't remember his name)
My heart is with you because I know how you must be feeling right now.
My b12 is still high due to loading doses in September and sublinguals afterwards, I have seen some improvement in my symptoms and feel a little better in myself but I am expecting some regression as my last jab was September 23rd and I didn't tolerate the high strength sublinguals too well.
The Neurologist is going to run a series of tests in the next couple of weeks so fingers crossed that he understands b12 deficiency enough to direct my head in the sands gp.
Please tell me what your symptoms are I am new to the forum . I feel like I'm going crazy , I have been told my b12 is low and first had the injections after the first six I think it was I felt awake but I was on loads of meds at the time . I have pain so severe all over but have different things going on aswell . Sorry I am so dizzy , I can't concentrate , can't stop repeating myself sometimes , crying in agony with my back and belly and spine , but also feel my kidneys are affected . Sorry I'm crying writing this because I can't even write this properly and haven't been able to for years . I have been having problems with my memory for years , I can't remember my past much . I think this has been going on for years silly things but I think it started when I was a kid and I feel like the last 30 years I have had problems with exhaustion , feeling scared because I felt like something was happening with me because I could never concentrate on things in school . And over the years my memory got worse , and everything I have read about B12 deficiency I have . I can't even remember how to spell simple words , thank god this does it for you . My GP (one off them ) has agreed to give me the injections once a month now . But I feel it still is not enough , plus I read another post a lady wrote and I feel the same way , since been taking pregablin forI think 4 or 5 months was fine until I started the injections (I say fine meaning it helped with the pain in my neck and spine ) I have no idea if all my problems are related to the B12. being so deficient for so many years . I'm scared to death , have no friends to talk to , my mother died 6years ago and my partner died 3 years ago . I was so bizz caring for them and not myself , as you do . I would love to be able to write a letter and put it all together properly , instead of not remembering the last few sentences I wrote . X
Oh Tracy.... I am not a medical person.... how low is your B12? Have you checked your folate / ferritin / vit. D levels? I also have Hashimotos and I believe the deficiency is linked to my thyroid problem. All I know is that I need B12 injections have saved my life and no.... 6 injections are not enough. Let's put it this way, imagine you haven't had water for 2 days, would you quench your thirst with half a glass of water? Or if a plant hasn't been watered for a couple of weeks and the soil was dry, would it make much difference if you watered it with a half glass of water?
I think you need to check out your vitamin levels - B12 is important but some of the symptoms you mention can ovelap with other medical problems.
Hi Vicky i didn't just have the first six injections sorry if I never said but I started the injections in August 2016 and after the six I was every 3months then I asked for it every 2 then 1 .And today I saw my GP again today .i explained that I had read one off the investigations you highlighted
Addisonian precious enaemia and other macrocytic anaemia with neurological involvement
Initially: 1000 micrograms on alternate days as long as improvement is occurring . He said to much was bad for me and I explained that I fact I had read on health unlocked where people write in and help one another that I fact I wasn't so because we urine it out . I begged him to read up on it that I have I believe been deficient for a long time . So we'll see , plus I have an appointment with my endocrinologist in 2 days and I am going to ask him to and if he doesn't know can he put me in touch with a hematoligist . X
Hi Tracy... how low is your B12? have you asked a copy of your blood tests? have you also checked your folate / ferritin / vitamin D levels? if you are seeing an endocrinologist, is it because you have a Thyroid problem? because pernicious anaemia is linked to Hashimoto.... both are autoimmune conditions... Did your GP say why too much B12 is not good for you? how does he know what level is best for you? please let me know how you get on with the endocrinologist.. I am so curious to see what he has to say... though my personal experience is that the doctors don't really listen and we need to take control of our health xxx
Hi VickyB12, please could you tell me more about the B12 Support group, as I have been looking for one. Is it online or a physical group? Do we have physical Pernicious Anaemia support groups in the UK? Many thanks
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