After a long battle (6 years plus), and countless GPs telling me blood tests are “within range” blah blah blah I have just been booked in for B12 loading doses and three monthly injections !!
I’ve drawn a lot of inspiration from people on this forum who advised me not to give up, and found all the information on here, with references to medical articles, websites, etc extremely useful when presenting my case to the GP.
Such a relief - fingers crossed I can eventually get my life back!
Well done. 👋
I hope you get some relief from your symptoms soon.
Hallelujah Well done.
Hope you get good results.
It does take time .
T C
bless you and well done for persevering. You have played a valuable role in the PA education process for GPs.
Please keep a journal of treatment , symptoms and activity as you will need this going forward to prove your point and win other battles.
Take care and such good news.
Thank you! It’s been a bit of a battle. Just before Christmas last year, GP agreed to give me B12 injections once every three months, but *without* any loading doses. She said she was worried about my B12 serum blood levels going “too high”. I pointed out that the treatment for cyanide poisoning was to administer 5 g of hydroxocobalamin., or the equivalent of 5000 standard dose injections !!!!
I can foresee another possible problem coming up in the future when they ask to do another B12 blood test at some point, which as far as I can gather is pointless once you have started injections.
That's excellent news ! Delighted for you , as I know what a difference this will make.From personal experience, remember that recovery can take many months, especially with neurological symptoms.
Try to push for continued loading doses until no further improvement if you have neurological symptoms, as this is the advice from NICE and as per the BNF. Doctors will try to resist that, but stay firm and insist.
Wishing you all the best x
Hi,
I'm so pleased to read that you are finally getting treatment.
I wondered if there is now something in your medical record confirming B12 deficiency or at least saying your symptoms are consistent with B12 deficiency.
Might be worth checking just in case a different doctor in future wants to stop injections.
I also suggest keeping a daily or weekly symptoms diary. Track up to ten symptoms (more if you have the energy) and score the severity. Note date/amount of any treatment received.
Keeping a record like this should help both you and your doctors to see patterns in your symptoms.
Forum members often report that symptoms get worse before they start to get better.
"B12 loading doses and three monthly injections"
I assume this means you're getting 6 loading injections.
It appears that your doctor has put you on a pattern of treatment recommended for those without neurological problems.
If you have neuro symptoms, you may want to point out to your doctor that there is a different treatment pattern for patients with B12 deficiency with neuro symptoms.
Links about UK treatment for B12 deficiency
NICE CKS Management of B12 deficiency
cks.nice.org.uk/topics/anae...
BNF Hydroxocobalamin
Click on Indications and Doses then click on Hydroxocobalamin
bnf.nice.org.uk/drugs/hydro...
GP can also find this info in their BNF book Chapter 9 Section 1.2
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (from B12 Institute Netherlands)
Unhappy with Treatment (UK info)?
How to write letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms.
I'm not a health professional.
Thanks, that’s all extremely helpful! I shall check my records as you suggest (but I suspect they’ve not been updated to say anything about a deficiency) GP took a lot of convincing, as I was supposedly “in range” (224). Initially tried to give me 3 monthly injections without any loading doses first !!!
(Yes, 6 loading doses over next two weeks, starting today)
😀
Blog post about being symptomatic for B12 deficiency with normal range serum (total) B12
b12deficiency.info/your-ser...
Some forum members turn to treating themselves as a last resort if NHS treatment is not enough for them. Some get extra b12 injections from private GPs, some get injections from beauty salons, some try high dose oral tablets but these don't work for some people and some turn to self injection.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.
healthunlocked.com/pasoc/po...
Thank you …. another one for my war chest 🤣
I hope you will spread the word about B12 deficiency among friends and family.
I suspect there are thousands, maybe even millions in UK who are suffering from undiagnosed B12 deficiency.
Indeed I will. I am already a vocal advocate 😀👍
Thanks again for all the helpful feedback!
(Atrial fibrillation patients)
The case for lower Vitamin B12 does affect many patients who are then diagnosed by a local blood test findings.
The doctor at the time was aware that my Vitamin B12 level were still very low - which was pointed clearly by the Locum doctor. My doctors surgery sole aim was to give Vitamin B12 pills only, but not offered by a direct injection: The results led to a stroke - and again, the local doctor and the hospital cardiologist did not realise that the importance was to test the levels of my vitamin B12 which was later found very low. Fortunately, my Locum doctor pointed out that my Vitamins B12 levels were far too low, especially the effects of the stroke meant that the patient could not get better normally. The impact of the low-level Vitamin B12 results did mean that the surgery doctor finally agreed to give out the Vitamin B12 injections culminated in a successful outcome, and Health Wise, the result was to recover quickly.
In reality, some doctors can be wary about anti-vitamin B12 positivity - and therefore, do not recognise the true benefits for patients who actually suffer from the impact of low Vitamin B12.
I live in BC (Canada) where the B12 injections are available and are inexpensive and I do not need a prescription. It is nice to have control over my own destiny. Is there somewhere you could get B12 to inject? My husband gives the the shots.
Self injecting is an option, but B12 for injecting is not available to buy in the UK unless you have a prescription from a doctor. Need to purchase somewhere like Germany and get it shipped….
I did not know where you live, but yes, others in the UK have been getting it from Germany.
I'm one more person rooting for you and celebrating your break through Edso57!! WELL DONE on your incredible perseverance!!
Thank you 😀👍
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