Hi everyone. I haven't been on for a while so hope you are all getting on better.
I would like to ask if anyone knows what percentage of the B12 goes into our bloodstream?
Unfortunately I am overdue for my injection because of shortage of nurses at our Health Centre so have to wait until Wednesday .
All the best to everyone
Margaret
Hi Margarets-S.
Percentage from injections is 100%. Percentage from patches, nasal spray, nasal drops etc. is approx 1-3%. These work for some but not for others...some find them useful for top-ups between injections. Worth a try in you're struggling.
Believe B12 boost spray can be purchased from Holland and Barrett - also available from Amazon, along with sublinguals, patches etc.
Good luck.
Thankyou Foggyme. I have been using patches with middling success but just wondered if the outlay was worth the percentage of the B12 actually doing any good. Will look at the spray. Have you tried the sublingual? All the best ☺
Hi Margaret-S. Yes, I've tried sublinguals but they didn’t really do much for me.
From what Gambit says below, it looks like the uptake from sublinguals and sprays might be slightly better (and they're less expensive), but it's very difficult to tell.
Just wondering how often you have injections from your GP, and if it's worth trying to get the frequency increased?
If your symptoms return before your next jab and then get better once you've had it, this is usually an indication that more frequent injections are needed.
Those with neurological symptoms should have injections every eight weeks (after the every other day until no further improvement stage) - but many GP's aren't aware of this.
Here's a link to the BNF prescribing guidelines about the more intensive regime of treatment for those with neuro symptoms (it's about the third paragraph down):
bnf.nice.org.uk/drug/hydrox... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)
Note: prescribing guidelines refer to treatment for pernicious anaemia...not sure if you have a diagnosis of PA. However, the treatment for PA is treatment for the B12 deficiency it causes, so the treatment for B12 deficiency is the same (whatever the cause).
Many here who struggle between injections and have GP's who won't increase the frequency turn to self-injection when all else fails (injection costs approximately £1).
We can advise about where to obtain supplies if this is something you ultimately decide to do.
Good luck.
👍
Hi again Foggyme. Yes I have PA and for a while was getting the injections every 12 weeks but last summer after a struggle the Medical Review man agreed to me having them every 8 weeks. I have spoken to him and the doctor who are hopelessly uninformed about the condition and they trot out the same chorus " We have to stay in the government guidelines " which was so frustrating. I have told them about the Vie patches and that many people are self injecting to which my doctor said " Oh my goodness, we don't want you doing that". So I decided enough was enough and on behalf of all who are fighting this battle I wrote to our MP Alister Carmichael and I have received a very pleasant and encouraging letter back saying he will bring it up with the Minister of Health and Sport. Some people aren't too hopeful that he will but I will wait a wee while and contact him again. It was the Government in Westminster who set up the guidelines so maybe he would need to take it up in there as well. After all, I want it to help everyone...not just Scotland. So here's hoping. I will let you know how it goes. Take care ☺
I am seeing my doctor today. She believes too much B12 is harmful. Ordered blood tests after I had been supplementing.... I have such a big mountain to climb to try to educate her and have no energy!
Does anyone know if oils from Australia work? I don’t believe my doc will order shots and my neurological symptoms get worse daily.
Sita
Hi Sita505USA. I am so sorry to hear about the unhelpful response from your doctor. Many are extremely ill informed about this problem. Regarding the idea that too much B12 is harmful, I personally haven't found that to be so and I have to supplement my injections with patches which I need most days or it would be impossible to function very well. On this forum others have explained that we cannot overdose on B12. It's a water based vitamin which means we get rid of any excess when we empty our bladder. My neighbour has just been in to give me a hug for telling her about the B12 Vie patches. She and her daughter were very low after bad chest infections ect. So they decided to try them and the difference in my neighbours wellbeing just after one patch is amazing. Her brain fog has gone, her eyes are sparkling and she is feeling so alive again...more positive. She doesn't have Pernicious Anaemia so one patch will be enough every 5 to 7 days or as her body dictates. Personally if It's possible for you to do so, I would suggest trying another doctor. You could also refer your present doctor to the Pernicious Anaemia Society and Martyn Hooper on Google. There are heaps of helpful studies to give more information. I wish you well and please let us know how you get on. ☺
Thanks Margaret. Finding another doctor is pretty near impossible. Have you found patches in Amazon? I like be in the US.
That's like where I live in most northerly point of the UK. Doctors are few and it's impossible for me to get to any other doctor. Yes, I get patches off Amazon uk but I don't think you can access them in the USA. You can try though. The only other thing I can suggest if your doctor just won't listen is that for the sake of your health you could go to the nearest hospital and see if their doctors would listen. Meanwhile arm yourself with as much information as possible and take it to your doctor and keep on at him/Her until they take notice. I have brought the matter up with our Member of Parliament and if he doesn't follow through then I shall go direct to the Scottish government and also the Prime minister of UK in England if necessary. We all are desperately needing to be listened to and it's people in your situation that need urgent help. This is a worldwide problem so hopefully we can make a difference. There are so many lovely helpful people on here who are far far better qualified than me,to give you advice so keep in touch on here. Have you been diagnosed with Pernicious Anaemia ? Take care Sita. I will be thinking about you ☺ PS...when I read about the awful problems and lack of help so many are enduring , it makes me angry because they are suffering needlessly. It was quite a shock reading their comments and how they just can't get the help they need. A big THANKYOU to them all for their help. It is because of them that I have learned so much more. 🤗
Margaret
I saw my doctor today. I had done my homework and had articles from journals on how B12 was NOT toxic in large quantities. Lists of my symptoms, I tracked when they started, etc.
Wonder of wonders, she agreed to let me do daily shots for a week, then every other day, then we meet again. I kept emphasizing that I did not want irreparable damage from the neurological symptoms. I have lots of neurological symptoms. I had the pharmacist show me and supervise me giving myself an injection. I just now pray that this works quickly!
Thanks so much for your support and being there, this is the hardest, loneliest thing I have ever been through and I have survived lots! People just do not get it, how horrible these symptoms can make you feel!
Blessings,
Sita
Hi Sita. That is good news. Has your doctor done any blood tests? It would be a good idea to get it done. You may possibly need daily vitamin D tablets as well. I am not so knowledgeable as a lot of others on here.
Gambit62 (administrator) and Clivealive and others will be able to help you so much more. I am just learning from them too. They are all wonderfully helpful so you could ask them for more information. Meanwhile, I wish you all the best and keep in touch. This is a big step forward though, and hopefully you will keep getting the help you need. Blessings to you too Sita ☺
OMG Margaret, yes, I have had tons of blood work. I take Vitamin D supplements. Wow, I got my shot late yesterday and it impacted my sleep. I will do the shot early today. Do you do your own shots?
Sita
I got 1000 mcg . Of Cyanocobalamin in my shot and did not sleep well at all. The pharmacist provided a few ‘drawing’ needles and then the needles to use for injections. This is so the injecting needle remains very sharp; do you all have any thoughts or advice on this?
Thanks as always, Sita
Can't advise you on the shots Sita. I don't do them. Things are so different in the UK. In Scotland our medicine prescriptions are free and a nurse at our Health Centre gives us the injections. I got mine today and it was the same (male) nurse who did it once before. For some reason he put it in my shoulder muscle this time. Never had it there before and whether it is connected or not, I had a headache for a short while afterwards. I will make sure that next time I get one of our own resident nurses. Hopefully you find your nerve damage improving soon. Take care and all the very best 🤗
Hi Sita505USA. Really pleased to see that you're making headway with your doctor and have been prescribed B12 injections.
Here's a resarch paper written by an American Consultant Haematologist (published 2017) that you and your doctor may like to read (especially your doctor, if they decide to stop your injections or reduce the frequency too soon - especially important not to do this because of your neurolgical symptoms):
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
Here's something about B12 therapy and neurolgical symptoms:
stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms).
And here,s some other information that you may find useful (treatment guidelines are UK ones - USA may differ - but the underlying principles are the same (especially those about getting frequent enough B12 for the body to replay and keep symptoms at bay):
b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)
bnf.nice.org.uk/drug/hydrox...
(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)
pernicious-anaemia-society.... (PAS Symptom Checklist)
stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)
onlinelibrary.wiley.com/doi... in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)
stichtingb12tekort.nl/weten... (Testing B12 During Treatment)
stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)
stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)
stichtingb12tekort.nl/weten... (B12 Deficiency and Neuropsychiatric Symptoms)
gov.uk/drug-safety-update/n... (Low B12 - Nitrous Oxide Contraindications)
Good luck 👍
from this study it looks as if it's around the 0.5% mark, ie 1/200 gets through.
ncbi.nlm.nih.gov/pmc/articl...
however, it's difficult to really get to a %-age from the results given as it's quite time based, ie the amount delivered depends on how long the patches are on and it isn't always clear what dose was contained in the patches.
Thankyou Gambit62. I will look at the link you have given me. I keep the patches on for at least 24 hours and occasionally if really needing a boost I have put on 2 at a time. I have to be honest with myself and face the fact that some of my lethargy has to do with age 🙄
B12 Patches
B12 Patches
B12 patches
