Obtaining B12

[Mrsannabbott]

Many thanks to Wedgwood,Eaoz,Singoutloud and Steap for your help.I will pursue the routes you suggest.Has anyone told their G.P. That they are self injecting or sought their opinion before being forced to do so? Having great belief in what is left of our precious N.H.S. I find stepping outside this quite disturbing. Thank you A A.

[fbirder]

Yes, I told my doctor.

I was feeling terrible just 10 days after my last loading dose (I didn't realise I was supposed to have more than 6). I tried pills, sublinguals (lozenges and sprays), nasal spray and patches. None of them helped much, if at all. So I did some research and ordered 10 ampoules from Germany.

I kept a logbook of my fatigue levels and injection times, put them into Excel and produced a pretty graph.

Armed with this I went to see my doc when my 3-monthly jab was due.

When I told him I'd started self-injecting he was somewhat dumbstruck.

First he asked how I knew I was doing it correctly. So I told him that the practice nurse had told me and watched me do the last two of my loading doses (she even got a student in to watch me do the second one). I'd told the nurse that I thought it was silly to have to come in and have her do it when I could save my time and the NHS's money by going it myself.

Then he asked where I was getting it from and how I knew it was the real I got. I explained that B12 doesn't need a prescription in Germany and that I was using an online pharmacy that had had a bricks 'n' mortar store for over 100 years with a reputation to uphold - like a German Boots.

He seem most shocked at the answer to his question about sourcing syringes and needles. He had no idea you could get them from Amazon UK.

Then we started negotiating a new dosing regimen for me. He wanted once a month, I wanted once a week. He finally said that once a fortnight was his final offer, I agreed with the proviso that I might use the German stuff sometimes. I think he was just happy that most of the time I would be using the 'real' stuff from the NHS.

So, I'm using the stuff from Germany four times every month and the NHS stuff twice a month.

It was at this meeting that I gave him a copy of Martyn Hooper's book, which seems to have placated him somewhat as we've never mentioned it since.

But others on here have related totally different experiences with GPs that aren't so flexible. I guess you have to decide if yours will be like mine or one of those who goes ballistic at the thought of patients daring to have any sort of control over their own healthcare.

[Mrsannabbott in reply to fbirder]

Thank you fbirder.Not easy for you.I have managed to get 2mthly jabs and am still easily exhausted so may pluck up courage to tell my G.P. It might just be my age! I am in my 80th year but feel otherwise well just no get up and go.Best wishes Ann

[Mrsannabbott]

Thankyou beginner 1.I will heed your warning and tread carefully.I suppose the difference in being a diabetic and injecting insulin( my husband was a diabetic for many difficult years) it is essential for life whereas B12 is not quite in the same league although difficult enough to manage.Self injecting for a diabetic 4 times a day is no fun and is part of the treatment monitored by a doctor. Thanks again it's good to share! Ann

[Deuto in reply to Mrsannabbott]

Ann, I am afraid that I must disagree with you on a statement in your reply above - namely that insulin is essential for life "whereas B12 is not in quite the same league".

For many/most of the people on this forum with Pernicious Anaemia or other forms of B12 deficiency where they are unable to absorb B12 through the digestive system, B12 injections are as essential for life for us as much as insulin is for diabetes.

People used to die of PA and these forms of B12 deficiency. That is why PA was called "Pernicious" Anaemia.

Prior to B12 being identified and injectable forms developed, the only relief for sufferers was raw liver three times a day which gave people a little longer life than if they did not have the liver.

For people with PA etc, not being able to get the number and frequency of injections they need means that they just 'exist' rather than being able to live normal lives.

I had a quick look back at your previous posts here and note that you were/are being given B12 injections for IBS. I could not find any mention of tests for PA etc.

So, sorry, but I could not let that statement pass without comment.

[deniseinmilden]

A couple of years ago, using the advice from the brilliant people on here, I persuaded my GP to supply me with injection kit for every day SI. After about 3 months, a neurologist I had been referred to accepted that the treatment appeared to be working and wrote to my GP saying, "No change in treatment". The next week the other Drs in my practice decided that as I was getting better and "was OK now" they would withdraw my treatment. Fortunately I had managed to get well enough that I could order my own supplies and I was able to carry on SI daily, and in fact at a higher level so that I improved much more.

Having had two bungled cases to do with breaking my leg a couple of times 20 years apart with the second time them misdiagnosing bone cancer and wanting to cut my leg off, plus loads of other anecdotes from other people, I have no automatic trust in anything medical and now question everything, despite knowing that the majority of Drs and nursing staff are brilliant and life savers.

I have made sure that my unorthodox treatment is on my records so that if I was to go into hospital they would be aware of what I need and hopefully allow me to treat myself as I need to, to stay alive.

Another reason is to have at least one example of successful daily jabs recorded on their system as proof that it does good, not harm, over a sustained period. If everyone who self treated made sure it was on their notes, there would be enough written evidence that in time the health service would have to change its thinking!

[jillc39]

I can understand that - but be careful when I told my gp I was having to si I was told to leave the room! by the way just back from Valencia where b12 is available for a few euros. I have stocked up - but it makes me mad to have to do it.

[Mrsannabbott in reply to jillc39]

Thank you Jill39,I will be careful,Just wish I was off to Valencia.😎