While I was at my Dr's this morning I asked him about self injecting (which I now do every other day or so), he still said the NHS guideline is still every 3 months. So I told him to check the latest guidelines regarding every 2/3 months. Apparently they have to wait till NICE tell them & he hasn't heard anything other than 3 months!?
He didn't agree but he didn't disagree with me SI after telling me my B12 level was 125 when diagnosed in April 2018 & after I told him that once diagnosed, it doesn't make any difference what your B12 levels are, he now wants me to have my B12 level checked!!
But, the thing that totally blew me away was this. I asked him why my prescription of Folic acid was stopped last month, as I had been diagnosed with Folate & B12 deficiency, along with Pernicious Anemia. I said I thought I was supposed to take 400ug of Folic acid per day to help with the B12. "Yes that's correct" he said. So why was it stopped then? His reply was "To save the NHS money"
It was all I could do not to swear & rant so I just laughed & shrugged my shoulders.
I knew the UK under this Pathetic government was struggling but, is this country really in such a bad way!???
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Ritchie1268
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Hi Richie. Your GP is wrong about having to wait for NICE to inform him of the alterations to prescribing intervals for hydroxcobalamin.
The online version of the BNF (prescribing guidelines for all drugs) has already been updated, as follows:
Hydroxocobalamin...
By intramuscular injection
For Adult
1 mg every 2–3 months.
(GP may be awaiting new version in paperback edition - which they have on their desk - so will have to view online for recent update)
All your GP has to do is look!
About the folic acid...prescriptions for many over the counter vitamins, minerals and drugs was stopped some time ago (I.e. folic acid, paracetamol, antacids...to name but a few items)...all these things cost less to buy over the counter, than on prescription.
For instance, folic acid 400mcg costs £2.70 for 90 tablets on prescription (plus add-on costs for admin, GP, and pharmacy time). The same costs £1 if bought from Tesco (equal quality etc.). So yes, changes introduced to save money.
A sad fact of the times...🤨.
As for checking your B12 levels following injections...nonsense, as you know. Costly nonsense, at that!
Come back if this impacts on getting the frequency of injections you need and we can point out evidence that you can take to your GP, if you need it.
Couldn't believe he wanted me to be tested again though.
I have a year's supply of B12 if I inject every other day that I got with Wedgewoods help from Amazon in Germany.
I hate needles though & I've wasted some as I've just stared at the loaded needle for hours sweating & shaking & end up throwing it! Don't know why as I've done it myself 7 times already in my leg & it doesn't even hurt! My partner does it for me at weekends but I just can't bring myself to do it at times. I'm strange like that 🙄😁
The day I couldn't get Folic acid I got a bottle from my local health shop for just over £3 so have been taking it regular.
I was just surprised (though I shouldn't be) the reason he gave for no longer getting it on prescription.
Oh Ritchie1268...we're all strange in our own particular ways 😉🤣🤣.
When shaking and sweating, load a syringe with water and inject repeatedly into an orange...and when shaking and sweating stops, substitute with a thigh...sounds silly but as pain is not the issue, habituation might just break that barrier.
My partner is a first responder & she actually got me to practice on an orange!
That was easy, but when it comes to actually sticking it in me, it's a whole different story.
The funny thing is & excuse me for saying this, I've lost loads of things with PA & B12 but my sense of humour remains! My partner said to me when I said I just can't do it: "well I've been used to having a small ***** for years so I don't know what your problem is!
🙄🤔 Don't have a clue what she meant by that, all I can say is it's a good job I Love her 😂😂
You just have to laugh don't you, or we'd all just crack up!
We laughed so much the first time she injected me, even though she's injected people before, I suppose it's different doing it to me. She held it like a dart, I said what you doing, I'm not a dart board!
Her words were, "I've put up with this for years, now, you're finally gonna feal what it's like to have a small ***** put in you for a change, God love her 🤔🙄😂😂😂
Does it really cost just £1 from Tesco for Folic acid!
I know the first time I misplaced my folic acid tablets prescription (Brain fog & still haven't found them!!) I bought Folic/iron tablets from Boots but, when I told the pharmacist what I bought, she said I'd have to take the whole bottle to equate to the 400ug per day I used to get on prescription.
But thankfully I bought a months worth of 400ug per day from local health shop for I think was £3.26 for a months worth.
If Tesco is around a quid for the same I'll head to Tesco 👍
Way cheaper than the £3.26 from my local health shop for a month's supply & even cheaper than a prescription!
Also, anything I can do to help save our country money & to help out our lovely caring government in their many cost cutting they are doing hey! Always willing to help 🤗🙄🤔
Guess I'll be Off to Tesco over the weekend then to get stocked up, just incase we get that
"polar vortex" We're yet to have that we should've had weeks ago! 😆 I'll get a couple a year's supply if it's on offer with 3 for 2 so I can stock up for years just incase they're going to tell us that that Polar vortex We're yet to have turns into the next Ice age 😆Thank you helvella👍
I buy all my co factors from Amazon and my injections Vials/ needles from Germany as I got so stressed out trying to get help from my GP and the most annoying thing about iris I was perfectly healthy until The NHS made a pigs ear of taking my gallbladder out 14 years ago and near killed me through gangrene & MRSA. Lost half my stomach & small intestine. Leaving me with Pernicious Anaemia almost bed ridden until I took on my own care.
Hi Ritchie1268 my 87 years old next door but one neighbour needed to have her ears syringed but her surgery (one mile away) said they could/would not do it and referred her to another NHS "establishment" five miles away on the other side of town who charged her £60 for two ears.
My "rottweiler" wife who drove the lady the ten mile journey there and back demanded to know why the charge was so high and was told it was all about costing the practice nurses time. Woof.
My surgery (two miles away) did my ears a month or so ago for free.
I must admit that I have cost my surgery dear over the last 53 years for more than 46 of which has been the supply and injecting me with Vitamin B12 for P.A. and I have to wonder how long it will be before "things change".
It's a very strange world we live in now my friend!!
I'm 51 now from (January 2nd) & worked damned hard from age 14, (markets at weekend while at school etc etc)
But, for 20 years I was hand stacking 125kg X 3000 concrete slabs daily which is now why I have degenerative disc desease in 5 discs in my back etc etc. But for the last 6 of the 26 yrs I worked for the same company, I was Operations Manager paying 40% tax etc, so I do apologise for the slight rant at my GP this morning but just wondering why after paying very many thousands into it over my working life, why they stop something they say I need for such a tiny cost!! But I'll buy it myself as I have been doing, it was just hearing it from my Dr's mouth, I thought Wow, this country really is now struggling 🙄
I was talking to my partner about it at the weekend & said. How come if we're (currently) all part of Europe, can I get B12 ampoules in Germany & Spain etc from any pharmacy over the counter, yet this daft country won't allow it.
She said as a first responder, even all counties are different in the UK.
Instead of having the same guidelines etc, for example, you'd be in Derbyshire where I am & in Staffordshire, 1 mile to their border from me, every policy & guideline is different.
But, when you have our current totally clueless health minister who says that "prevention is better than cure, eat loads of broccoli to prevent B12 deficiency" then what hope do we have Clive?? 😂😂😂
Perhaps you should point out to your GP that failure to treat PA effectively runs the risk of long term neurological damage. Therefore, in alignment with the new NHS 10 year plan perhaps prevention might be better than cure?
Thank you. But I don't even know who my MP is now.
I contacted my MP around 4yrs ago when I wasn't getting the help I needed to get off the legal Heroin I was put on by my then GP for the disc desease in my back who got me addicted to something I knew nothing about. When I said I wanted my life back & wanted to come off the stuff that was responsible for killing very many thousands in the USA, I wasn't given the help I needed.
My MP even though he tried, didn't offer help, it was only through a drug charity in London that I got the help I needed & have now been free from it since August 2015, but it's taken a while & took away parts of me that still haven't returned.
I take the cheap supermarket folic acid from the supermarket. Just as effective . Like our own budgets, the NHS pennies count. If saving money this way means there’s more available for life changing drugs, so be it.
But I was gobsmacked when my GP actually told me! Especially when he said I needed it.
But do you really think the money saved will go back into the NHS to offer "Life changing drugs" that's where I have to totally disagree with you, sadly!!
I do think, especially after the folic acid prescription, he will say I no longer need the injections now due to my now high levels of B12 due to me now self injecting.
My symptoms would return after only 3 days of the 3 monthly injection, to what I used to call "feeling normal" so I'll be sure to show him this.
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B12 deficiency follow up.
NHS Scotland guidelines?
Help needed - doc says tests not available on NHS, stopping my B12 - no treatment plan offered - help!
