I have a query.
I was recently diagnosed with low B12 and prescribed B12 jabs. As they are only 3 monthly, (after the loading doses), i decided to self inject on a more regular basis.
I have received an email from my private endo advising me not to. We will be speaking on Tuesday. I wondered though, kis there anyone out there who has had similar advice?
Kind regards
Jane 😊
Although I don't have knowledge about self injecting. I think personally that substances obtained for self injecting 'may have potential unwanted substances in them.....
I 'think' I have PA BUT would only go through either GP/Consultant or Sublingual drops with Certificate from UK.
I'm sure someone will come along soon with a different opinion though :-;
No.
Those of us who SI tend to buy our B12 from reputable german pharmacies. The stuff they supply is as good as (in some cases, identical to, the stuff the NHS uses.
I know, that was my impression and I am going to carry on SI unless my endo knows something I don't !
Please be open minded to all the options to get yourself well. Few medics have all the facts.
I have done over 1,800 self injections now and have gone from barely able to walk or talk with no memory to better than I thought possible and not far off normal now, with ongoing improvements, despite increasing age and other things going against me!
I am so pleased you have recovered well 😉 I will remain open minded always!
Many doctors are against self -injecting. B12 is harmless . One cannot overdose. My doctor told me that too much B12 was toxic ! Some B vitamins can cause harm if overdosed , but NOT B12 .,It is disturbing to think a doctor is not well -informed about a very important vitamin .Don’t be put off self-injecting B12 . Do listen to the reasons that the doctor gives for not self-injecting , and get back to us , and tell us . Have you been tested for P.A. ? You may well have it , as I see from your profile that you have an autoimmune thyroid condition . . It often accompanies P.A. : as you might have noticed in the posts on here . Autoimmune conditions seldom come alone . ( P.A. is an autoimmune condition too ) Best wishes .
Hi Wedgwood
Thanks for getting back.
Yes I was suprised to hear that from my endo. Especially as he is held in high regard.
I have a telephone consultation with him tomorrow so will get back with his thoughts.
Meanwhile I have my stash in the cupbourd and will he continuing. Unless there is new hot off the press info that flys in the face of all that we have learned!
Because I had small bowel (ilium) surgery years ago that hinders b12 absorbsion. probs have PA but not had the tests.
BTW have you read any of Dr Chandrys work on B12. I have one of his books. Heavy but highly informative.
Hope your getting on okay
Jane 😊
Your B12 deficiency condition won’t be called Pernicious Anaemia if it was caused by the surgery.
Best of luck of luck with your telephone appointment tomorrow .🍀
I’m OK — I inject weekly -every Monday morning , after I’ve set the washing machine going ! 💉
Ha! then you wont forget
☺
Yes - I never forget now ! 👍
An endo isn’t a specialist in B12 matters and so it’s likely that yours is only familiar with the usual ‘injections every 3 months’ mantra.
I had a fantastic care from an endo when I was being treated for Graves’ disease (overactive thyroid) some years ago. However, I saw him more recently as my thyroid is edging towards being underactive and he noticed that my GP allows monthly injections which he immediately moved to change to 3 monthly. I firmly told him this was not to be meddled with and reluctantly he accepted this.
So my opinion of him remains as fantastic for thyroid matters but lacking in knowledge and worse than useless as far as B12 is concerned.
I know what you mean However this doc is pretty clued up. So I am wondering whether will say 2moro ..
Will post it on this site x
Just about everyone who has PA needs more frequent jabs and is advised against it by anyone who doesn't have the problems we suffer!
There are thousands of us who self inject, against advice, because that's the only way we stay alive.
There are hundreds of people who have done it for decades to good effect, who would otherwise be dead.
While you do have to be sensible and avoid untrustworthy products, if you use the mainstream products that are available from German pharmacies, they are often exactly the same ones that are used by the NHS, or better, so there is no problem whatsoever.
If possible get him to give you written evidence of the dangers of SI B12!!!
Over the last 5 years that I've been part of this group, non of the people who advise against it, when challenged, can prove that they are anything other than ignorant and scaremongering!
We'd all love to see their evidence and certainly should have it so that we can advise people correctly!
In the meantime I will continue to SI every day and continue to improve!
Ah ... yes, I'm injecting daily at first.
Will see what dob says 2moro
😊
What makes you think you need more regular jabs?
Have you asked your doctor to have them every 2 months, as described in the BNF? Your doc may not know that the recommendations were changed from 'every three months' to 'every two to three months' over a year ago.
I've read a fair bit online. In a hurry to get better ... And I know that you pee any extra out. So trial and error at the mo
☺
Hi,
BNF guidance on treatment allows for B12 injections every 2 or 3 months.
If you had or have neurological symptoms, my understanding is that you should be on injections every 2 months if you're in UK and the guidance allows for injections every 2 months even if neuro symptoms are not present.
How many loading doses did you get?
There is a different pattern of loading doses if neurological symptoms are present but I suspect that some GPs are unaware of this.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed last year.
pernicious-anaemia-society....
BSH Cobalamin and Folate Guidelines (UK document)
b-s-h.org.uk/guidelines/gui...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
MPs and devolved representatives
May be worth talking to MP or devolved representative if you feel NHS is not giving recommended level of treatment.
Care Opinion
Website where people can leave anonymous comments on health services.
I wrote very detailed replies on another forum thread with more info eg symptoms lists, causes of B12 deficiency, tests for PA, list of B12 books, list of B12 websites, more UK B12 documents, letters to GP about B12 deficiency and other B12 info including hints on dealing with unhelpful GPs, which you might find helpful.
healthunlocked.com/pasoc/po...
If you're in UK, be aware that the pandemic is impacting patients B12 treatment.
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link.
healthunlocked.com/pasoc/po.....
I am not medically trained.
Thanks for all this sleepy 🙂
I have had the usual 6 loading jabs and plan to jab daily for first month and then probs weekly. Unless I hear something suggesting strongly otherwise which I doubt!
☺
Due to many horror stories I'd read on here from others experiences with "Professionals",
"It's toxic" "It's addictive" "It gives you a buzz" along with all the other rubbish some of these "Professionals" come out with, I was dreading my appointment with a Neurologist last year for my painful feet.
After it was confirmed small fibre Neuropathy caused by PA, I was offered all sorts of drugs which I turned down.
When I said I've been self injecting every other day for months, I was surprised that she said to keep doing what I'm doing, as the regular injections may heal the damaged nerves, but will take time.
She wrote to my Dr about our conversation & my Dr is fine with it.
Fast forward a few months & although my feet are still painful when I over do things, they are improving.
Guess I'm one of the few lucky ones who found a "Professional" who knows what they're doing.
Wow! that's amazing.
I am def going to carry on with my daily jabs.
Thanks for that. I am so pleased for you 🤗
My husband tells me that there is some evidence that patients with kidney problems do not get the benefits associated with B12 injections presumably because the B12 accumulates excessively and is not excreted successfully. His godson , a GP says that because B12 is involved in cell replication, they are taught to keep supplementation to a minimum for fear of boosting abnormal cell replication in any undetected malignant cells. How such fears could be substantiated is unclear and what evidence exists is debatable. I am still self injecting e wry two to three days.
Hi reteaher
Thank you very much for getting back to me. Something to look out for and research.
Jane 😊
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