I need B12 injections. Could any members tell me of their experience. My doctor has said my B12 is normal but it is almost out of range.
B12 injections : I need B12 injections. Could any... - Thyroid UK
B12 injections
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Meerkat1234
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Hi Meerkat. What symptoms did you have if any? My sister was low in B12 but only got tablets. She and I are both hypothyroid and both suffer with balance issues.
Hello Shenka. I suffer balance problems like you and your sister. It is frightening and I have fallen over many times lately. It only started when my B12injections were stopped. I can’t take the tablets and I can’t eat or digest it. I also got numbness in my hands and feet and dizziness and trouble to walk but I think that is weak muscles because of being hypothyroid. Thanks for reply.😊
Sorry to hear this. Ask the receptionist for a copy of your blood test results. You are legally entitled to them. The range is very wide so you can be low but in range and have multiple b12 symptoms. A good way to check this out is to do the assessment sheet on B12d. Org. You can print off and show your GP.
Secondly your GP should also be guided by you having neurological symptoms. Neurogical symptoms fir example are things like, numbness, tingling, loss of balance, feeling uncoordinated, blurred vision, tremors, bowel or urinary incontinence, memory loss....
These must not be ignored. Your GP should investigate if you have PA by a blood test for Intrinsic Factor (only picks up about 50%of PA), family history, checking foe coeliacs (because this can cause loss of absorption of nutrients), vegetarian. They shouldn't delay starting treatment once blood tests taken. If you are not vegetarian they can start alternate day of b12 injections and refer you to a neurologist. This is because if it isn't due to diet then very low B12 levels are unlikely to respond to supplements sufficiently. All this is on the Guidelines from NHS/Nice.
Not all GPs are aware. You might find it helpful to look at the PA Society Website.
Hope this helps.
He’ll waveylines. Thank you for all the information you have sent. I have been really unwell since in February 2020 dr stopped the B12 injections. I have balance problems, numbness in feet and hands, dizziness, blurry vision, and chronic muscle weakness. I came on this forum because of eating and digestion problems so I can’t eat B12. I don’t know why. I get in so much pain. So it is probably due to diet.. Thanks for replying
Why did your doctor stop your B12 injections? B12, injections are usually for life. Your digestive problems... Have they been investigate? Eg coliaces, gluten intolerance, allergies etc...
The symptoms you describe are typical of B12 deficiency.
My doctor wants me to test for celiac but I have been gluten dairy and soy free since 2013. Gluten makes me very unwell, physically and mentally. I now get stinging spots when I accidentally eat it or get cross contamination. I tried Betaine hcl a few days ago to eat some salmon and now I am in terrible pain on my upper right side. I haven’t eaten properly for ten years. The dr stopped my injections because the level was too high and he didn’t know why but this is what it does I have read on here. I badly need them but couldn’t inject myself nor should I have to. I have Autism and ADHD so life is difficult and these disorders have gut issues. I went to an allergist at Guys in London but he didn’t do any tests, he just kept asking me if I have any lupus in the family, which I don’t to my knowledge so that was not any good.
Thing is if you had regular b12 injections your tummy issues may well settle down. Your GP is incredibly ignorant to have stopped your B12 jabs. There is no need to test once on b12 jabs & of course your levels would test high because of the jabs but it's what gets into the cells that really counts and there is no test to check this. Can you not see a different GP and get the b12 jabs re instated? I buy some B12 syringes and needles myself to top up on what I get from NHS script. I do this because I feel better and it keeps my symptoms mainly gone. A lot of people do this because without they end up feeling ill and not enough b12 causes damage in the long term. I know it's not right but sadly what we end up doing.
I'm glad you keep the gluten out of your diet as you've found that does help.
I am having a dispute with my husband and daughter as they think I should go back on gluten to find out if I have celiac disease. Whatever I definitely need B12 injections as I cannot take supplements. Thank you for replying.
Is there a B12 assessment you can take then.
There is an online symptoms checker for B12 deficiency as per my first reply:-
"A good way to check this out is to do the assessment sheet on B12d. Org. You can print off and show your GP."
Thank you I will do that.
I have 3 monthly B12 jabs, my B12 blood levels are sky high, over 2000, as they are when having jabs. So much so my surgery gets reprimanded by the Lab for testing B12 levels in patients on B12 injections as it's a waste of time.
I've had them for years and thankfully no one has suggested I stop. In fact my old, now retired GP lectured me sternly on the importance of having them due to the neurological damage B12 deficiency can cause.
This is what I need. I will tell the doctor. Thanks you for your informative reply.
Thank you Waveylines, I just did the assessment and scored 73 so now know why I'm feeling poorly. You have really helped me.
Hi Shenka, if you had previously been diagnosed with b12 deficiency and put on injections then those injections are for life, your dr is being negligent by stopping them.. you could write to the practice manager stating the increase in symptoms you have and that you want loading doses again and continuing injections.. the actual treatment for neurological damage such as you have is every other day injections until symptoms stop improving and then slowly space out injections.. there are cofactors to take as well.. are you on fb? If so please join vitamin b12 wake up group, if not on fb then look up the b12 society website for guidance.. the b12 society runs the fb group, they saved my life.
What is the fb group. Thanks for replying with all that information.
It’s a b12 deficiency support group, has a wealth of correct information
Thanks for that information.
how do I get on to that group as I am not very good with a computer because I am 65 years young 😂
I’ll get you the link
Thanks for getting me the link. That is really kind of you to send me that.
you’re welcome, the advice from the group saved my life, I was becoming bed ridden and had awful symptoms.. I have my life back and after four years of every other day injections I set up a dog walking business.. before I started my own treatment I could only dream of having a life
Hello Maisal11. That gives me such hope as I had lost all mine. I am bedridden in my dining room with a commode. Our shower is upstairs and I cannot get up the stairs. You have got your life back walking those doggies. This is the third year of being like this and I have now got the answer. My blood platelets are too large which is anaemia and the doctor is worried about that and I have a haematologist ringing me in July. I have missed so much in my family. I have done an assessment on the B12 society and I have nearly all of the symptoms. I even had foot drop which made me think I have multiple sclerosis but this too is B12 deficiency. Thank you so much for helping me. There is light at the end of this long dark tunnel. Just convincing the doctor now. I will let you know what happens. I will have to pay for them if he won’t listen. Take Care
I wish you wellness, it’s a long journey but there is hope for you x
Thank you so much. 😊
Hang in there. On B12d. Org you can download Dr Chandrys book on b12 deficiency for free. He's retired now but was a GP that fought for patients who needed b12 injections.I myself was so poorly. I was struggling to walk, double vision that the optician couldn't correct, fatigue, weakness, tremors, numbness, weird sensations, tummy troubles, memory problems. I've been on b12 jabs for at least 3 years. I take a B complex as well. It has transformed my life. I have to injection daily. Intrinsic Factor was negative.... Lol..
I did go on the website and I did the questions for vitamin B12 deficiency. I had almost every symptom. It is no wonder I have felt nearly dead for three years. I had no idea it could do all that damage. I even had a thing called foot drop where I couldn’t lift up my foot. I thought it was fibromyalgia but that didn’t fit. I then thought it was multiple sclerosis. I have got all the symptoms you had and almost bedridden. I will download the doctors book and read it. Where do you get your injections. I am so weak and probably need daily injections. I hope my Intrinsic Factor is negative too. 😊
Awww so sorry to hear that. List it all in your letter & enclose a copy of the assessment.I'll pm you re B12 jabs.
I've had B complex plus B12 injections privately and I definitely noticed an improvement to my mood, energy levels and sleep quality.
Hello,Zazbag. How do you get them privately. You shouldn’t have to pay. Your doctor should be giving to me and you. I was the same as you I felt so much better on them. The doctor stopped and I got numbness, dizziness, balance problems when I have fallen several,times lately and I am 65. It helped my energy sleep and mood like you. Thanks for replying.Do you have them now.
.
.
I went to a private clinic in London. I don't have pernicious anaemia or even a deficiency so I don't think injections are available for me on the NHS. I wanted to see if it helped me feel any better though to have B12 levels higher in the range.
That might be what I have to do but you shouldn’t have to go to London or pay privately. Thanks for telling me.
I live in London so it's not a big deal for me. Ideally I wouldn't have to pay but there isn't an alternative option unless you have PA.
I live miles away from London. How did you find the doctor and are they expensive may I ask if you don’t mind.
You'll be able to find them closer to where you live, have a look online.
What do I look for
"B12 injections near me"
Thanks obvious I guess 😂
I did B12 injections for years. Regularly. I tried different kinds. I was never crazy about the injections, but I always felt good for a few hours after, and, I guess for the next day or so.
Eventually my doc recommended Solgar's sublingual B12, 1000ugs. It gets absorbed under the tongue through the mouth. My B12 is higher now than it has ever been. You say you can't eat it? The Solgar ones are very tasty! It's almost like having a sweet - I look forward to taking it.
I hope you feel OK soon.
if you have absorption problems then tablets and sublingual b12 will not heal neurological damage, only injections can do that unfortunately
I completely agree and that is why I need injections.My doctor says my B12 is normal but it is almost out of range.Thanks for replying.
Did the doctor give you the injections.
In the beginning it was the doctor. Then I went to pharmacy nurses. I managed to inject myself once...! Then I got a friend who was comfortable with injections to administer them.
Regarding the absorbtion issues, my old doc recommended the Solgar sublingual because she said they're quickly absorbed under the tongue. I do have gut absorbtion issues, and the sublingual tablets have personally helped me immensely. Other people might have other experiences.
My answer would have been what you said serendipity .Sublingual order off amazon.All old people without exception are low in B12.Poor absorption relates to the gut.The replies you got were very dogmatic.You can't help some people.Maybe the doc should give more injections but like most of us they are work shy, and again like most of us if challenged become argumentative.Any thing you get from the NHS is a bonus but if you are worried about your health doing something yourself is probably more reliable.
I know it’s far from ideal but you can get b12 injections everywhere now. I think usually for about £30. You can get b complex and vitamin d too. I had these from a local beautician because my gp wouldn’t help me. I would much rather it be done under proper medical supervision but I was desperate. Obviously research reputable places near you
Thanks for replying. It was really kind of you. I am seeing the doctor on 12th June.
If you have to do them yourself you can self inject much much cheaper! However you have a case to get your B12 injections back. Your GP is bei g negligent. You may need to write a formal letter to the Practise manage outlining all your symptoms you ha e and how they have worsened since injections were removed. Ask for the injections to be reinstated and to be given every other day for as long as you need thrm as to go without you are deteriorating and you are developing increasing neurogical symptoms and you are concerned that the lack of b12 is causing you damage. Remind them of the NHS/, Nice guidelines. Ask for a response withing two weeks and state you want your letter on your medical file.This should worry them and hopefully it will gee them into action.
It's appalling the way they are treating you.
Thank you for all the advice of what to do with the useless doctors. It is terrible that I have been left like this. How can a person know what B12 deficiency does to the body. That is what the doctors get paid for. Thank you for telling me what to do. My doctors appointment is on the 12th of June. Will let you know what happens. Thanks 😊
No worries. Down load Chandrys book, it's free and read. Knowledge is power. I know it's wrong but these days you have to take control or you end up with poor treatment (or none) like you have. I learnt this the hard way but since I've read up, got support and politely stood up to these doctors my treatment & health have improved hugely. Sad but true.
I will download the book. You are right. I have trouble with taking control with the health profession as a whole. Doctors intimidate me. The reason for this is I have Autism and ADHD and they are communication disorders so I struggle.
Aww yes that is tough. Most of us find Doctors are intimidating. And it's very hard when your views are dismissed as irrevelant. You might find writing a letter to the Practise Manager easier? Keep going.... there is lots of support on here. You are not alone.
Thank you waveylines. I am grateful for all the advice on here. Thank you for your kindness and encouragement, much appreciated.😊
Some years ago, I was experiencing vertigo, breathlessness that would not go away when I took my asthma inhaler, pins and needles in my legs and arms, muscle spasms in my throat and could not breathe for a few seconds when it occurred. I also had severe pain in my spine & up my back that meant I could barely walk, concentrate or do anything and could not sleep properly. I had severe shooting pains in my head (not headaches). I also experienced memory loss and would not know where I was, this happened to me at work, which was embarrassing as I simply stood in an office not knowing where I was or why I was there. I also couldnt remember things, where I had put them or what I needed to do. Thankfully my employer allowed me to work from home and I would also work during the night as I could not sleep due to the pain but working & writing emails helped a little in distracting me from the pain.
My B12 was just inside the normal range and my Dr was very nasty to me as he refused to give me B12 injections as I was not below the range. I then took the information off the pernicious anaemia website and made another appointment and showed my Dr the information and explained my symptoms. This appeared to make him extremely angry and he would not read it, he said he was capable of reading materials himself.
He would only agree to prescribe pain relief, which by this time I just cried and cried as I was desperate for some help. He then said angrily, he'll prescribe B12 injections to shut me up as they don't cost much. He went to see the nurse and took me to her as she was to give me a B12 injection. My Dr stood there and shouted at me 'You could have MS', to which I replied 'Well lets see if the B12 injections make a difference before we consider MS'. He shouted 'you are working and have a young son and need to pull yourself together'.
The Dr left and the nurse gently said 'we know our bodies and what we need' and by this time I was sobbing. I had the injection and felt it go through my whole body. The pain was marginally better, enough that I managed to get some sleep that night. With each loading dose, my symptoms improved and by the last loading dose, I was a new person, all symptoms had gone and I still continue to have B12 injections. Since then, I only ask to see a prescribing nurse.
Shocking treatment from many GP's, if my Dr had his way, goodness knows what would have happened to me.
Ask for copies of your blood tests and do your best to speak to your GP or possibly a prescribing nurse may be more supportive.
Good luck.
what a terrible experience for you. My doctor is horrible. We shouldn’t have to go through this when we are so unwell. Thanks for telling me about how you suffered with your doctor. I am seeing mine on the 12th of June so I expect a fight which I certainly don’t want to have as I feel so weak but I can’t go on like this. I am just lying in bed all the time. Take care of yourself and thanks for your reply.
I do feel for you and wish you all the best. When you are so unwell it is hard to fight for the help that you need, which is why i just fell apart and sobbed when i saw the GP
but it done the trick! The injections are not costly but the Drs are so focussed on in range and out of range blood results. It really should be based on the individual's symptoms. I do hope your Dr agrees to the injections, will make the world of difference to you.
Thank you for the encouragement. I have never felt so unwell in all my life as I do now. My husband is coming too. I appreciate your kindness. Thank you so much 😊
Hi, I have private b12 injections, my gp said my levels are OK but they were very low, b12 injections are really helping me so much, very grateful for them. Happy to pay for my health no issues about that. I pay 20 pounds for b12 and recently started vit D 😊
where do you get your private injections from. Pleased you are feeling better now. Do you get Vitamin D injections too. Thank you for replying
A friend in Stirling told me beauticians offer it, so I emailed many in my area until I found one. I paid a 100 for 5 months, that worked as £20 each. The girl is so welcoming and friendly and she told me most of her customers were belittle by their GP ....
Thanks for telling me that. How do you know where they get it from.
I google the types of b12 injections available in UK and i asked each beautician which brand they have. Some were not very kind, one told me to go to my GP 🤣🤣 as if.. lol
But I then choose what was best for me.
I love research 😊
Thanks for replying. I will have to get researching too.
I am pleased you are able to get them. The doctors should be not allowed to treat the patients the way they do. It makes me so mad.
Hi, Meerkat! I have asked for B12 shots and been told no. I think you’re lucky to have a doctor give them to you. I used to get them weekly as a teen and they helped me with fatigue and my count was low at that time. Now they insist that my tablets are enough. I hope you find they help you feel great. Best wishes!
It is disgusting that you have been told no. Vitamin B12 is so vital for us. Thanks for replying.
I know my friend buys her own. I will ask her where from. My GP’s stopped my B12 injections at lockdown & refused to reinstate them. My levels dropped significantly from 800 to 400 the first year then to 200 last year then after being admitted to hospital with something else they asked why they had been stopped. I said maybe they are expensive but they said not & asked my GP to re start them. They reluctantly did last August 3 monthly but then after 2 reduced it to 6 monthly! I’m considering buying some myself tbh.
I am really sorry that you had to go through this. I have needed them from February 2020 when doctor stopped them. It is appalling. Hope you are feeling a bit better now. Thanks for replying.
I have no idea why the GP’s were allowed to do this to so many patients. I was on them for 12 years till lockdown. My friend’s were also stopped by a different GP miles away 🤷🏻♀️. I hope you get your GP to listen. It’s dreadful when they don’t listen to you. You know your own body better than them. I’m just annoyed after allowing me to have them I saw on my NHS app they had contacted an Endocrinologist to ask them if 6 monthly was adequate! awful when they are so cheap. Let us know how you get on x
I read that the government have told the doctors to stop giving them since covid due to the usual reason money. It is usually that but they are cheap and lifesaving. I feel nearly dead and I am scared to walk because of my balance. What an appalling country to live here in. I am going to let my husband talk to the doctor as he is desperate about my health. The nearest private pharmacy is miles from me. I will let you know how we get on. Thanks for caring.
Yes it’s good your hubby is going with you. My hubby mostly goes with me for most appointments. Do let us know how you get on x
Thanks for replying. Pleased you have a good hubby. I need my husband with me like you do. 😊
Definitely x
I will definitely let you know Otto11 what happens. X 😊
Hello Otto11. I am going to doctors on June the 12th and I will definitely let you know how I get on. Thanks 😊
👍 🤞 x
Hi Meerkat, many people with thyroid diseases have methylation problems due to genetic polymorphisms (mutations) such as an MTHFR mutation, causing certain deficiencies such as vitamin B12 deficiences and others. There is a connection concerning genetic polymorphisms such as of the genes MTHFR and COMT and others. Knowing your genetic mutations helps to find out what form(s) of B12 are the best in your individual case (e.g. either Methyl-B12, Adenosyl-B12, and/or Hydroxi-B12 or all three forms). Since an MTHFR-mutation can sometimes cause high levels of B12 even though there is a deficiency, it's always the best to check holo-TC and methylmalonic acid to get correct values and see how much B12 actually reaches the body cells.
Apart from that, I would always recommend a genetic test to find out about your polymorphisms, there is a good company in England called "MTHFR Genetics UK" where you can get a saliva test from. The book "Dirty Genes" by Dr. Ben Lynch provides you with basic info about such polymorphisms and their treatment with supplements etc.
Thank you for such a detailed and informative reply. When my doctor stopped them he said that my B12 had gone really high and he didn’t understand why so he would stop. Is it dangerous for me if the B12 goes too high. I don’t want to hurt my health.
What is holo-TC? I know I’m compound heterozygous but that’s all I know. My B12 is extremely low and I was trying to get methylcobalamin from my Hemotologist. Thanks!
I don't know if you've already been told this but there is a Pernicious Anaemia (PA) group on Healthunlocked (this website).
You can find them here :
and you will have to join the group the same way you joined this one (i.e. Thyroid UK). It's free.
Quite a few of the PA group members buy their own B12 injection ampoules and injecting supplies and teach themselves how to self-inject. Or they get a family member or friend to do the injecting for them. You will need to ask on the PA group what to do and how.
When my doctor stopped them he said that my B12 had gone really high and he didn’t understand why so he would stop. Is it dangerous for me if the B12 goes too high. I don’t want to hurt my health.
So you have been getting injected with B12 and your doctor doesn't understand why your B12 levels are high? Is he an idiot? As has been mentioned earlier there is no point in testing B12 levels in patients who are having injections because they will often be extremely high.
Here are the NICE guidelines on B12 and folate deficiency. They are probably a long read, but it would be worth the effort :
cks.nice.org.uk/topics/anae...
And the answer to your question about whether high B12 is dangerous is definitely "No".
See the following link :
stichtingb12tekort.nl/weten...
The website is run by a Dutch organisation called Stitching Tekort B12 which translates as "Pernicious Anaemia Society" (I think). They have some very useful articles in English that are well worth reading for anyone with B12 problems.
stichtingb12tekort.nl/our-e...
Edit : If you are forced to supplement B12 with tablets for any reason then the best one for most people is made of methylcobalamin. I don't have Pernicious Anaemia (that I'm aware of) but feel better with very high levels. I take 1000mcg methylcobalamin tablets which I buy from Amazon or other sites selling supplements on the internet. I also take a good quality B Complex as well as the methylcobalamin tablets.
There is another form of active B12 called adenosylcobalamin. Some companies combine the two active B12s, for example, this one - but there are others I think.
cytoplan.co.uk/vitamin-b12-...
You might find this helpful :
perniciousanemia.org/b12/fo...
perniciousanemia.org/b12/le...
Afternoon humanbean. Thank you for all that important information. All the doctors at our surgery are idiots. The one who stopped the B12 is the boss. They have put me through a nightmare for three years. I feel nearly dead and bedridden nearly. I can’t get up my stairs to my bedroom and am sleeping downstairs with a commode. My marriage is suffering and the relationships with my two children and two grandchildren. They haven’t been able to understand and I didn’t know what was happening to me but now I know. I will read all your links which you have so kindly sent me. Just a fight with the doctor or I will have to get them somewhere else. Thank you for telling me that B12 can’t go too high. These doctors know nothing and refuse to listen to their patients, it is disgusting. Thanks again.Have a good evening. I will let you know what happens and I will go on the Pernicious Anaemia site with your link.😊
I give myself my B12 injections every 2 weeks- it’s super easy and the only time I notice a difference is when I forget to do it- I’m more tired than usual.
Thank you for replying to me. Pleased it is easy to do. Take care 😊
Dear Meerkat1234,
I'm surprised that, your Doctor, wants to use Injections, Cyanocobalamin- Vitamin B12- is water soluble, so is easily absorbed. Unless your 'System' has a Problem doing so.
I would just 'Ask The Question', if not the Injection is NOT 'Big'- especially if you have had Covid, or Flu.
AndrewT
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