Frustrated.....

[Brownie49]

I posted on here 3 months ago how at 10 weeks my PA/B12 symtoms get worse, but docs will not inject me any sooner than 12 weeks. I received some fantastic advice and support and was given lots of informative links. So armed with all the info I wrote to the doctors listing all my symptoms and the impact it was having on my life, I also added the links to support my request to have injections sooner. I had asked if they couldn't support me, please refer me to a haematologist.

They replied and let me have the injection 2 days before my 12 weekly injection. Again they referred to my b12 level being over 2000 so I was fine. I pointed out that it's pointless doing tests on b12 once on shots as they are not always correct.I asked if there was a test that could show what my b12 level was at a cellular level, which they said no. My docs said they spoke to Haematologist who said my levels were fine and I dont need an appointment. I had been referred to a Rheumatologist; I had bloods taken. I received a call this week with clear results. When I said the joint pains start 2 weeks before by b12 jab is due, he replied its psychological there's nothing wrong with you, your b12 level is over 2000!!

So here I am again 10 days before my jab and the surgery are refusing to give it any sooner than 12 weeks as its toxic. Have they read the letter I wrote? I very much doubt it as they seem just as ignorant to the neurological damage it can cause. When I said I can barely walk or function, they replied oh well you will just have to wait and put up with it. I'm at my wits end! I've read all the previous links, can I take this any further, I've already written to the Surgery Manager? SI is really not an option as I have a needle phobia.

I am looking for some direction on where to go now to pursue this.

[fbirder]

Write a letter. Keep it simple and to the point. Bullet points are best.

The symptoms of my B12 deficiency are returning at 10 weeks after an injections.

The British National Formulary say that recommended treatment is injections every 2 to 3 months. So there is nothing to prevent me getting injections every 8 weeks.

There is no evidence that high levels of B12 are toxic.

I want to have my symptoms treated, not my numbers.

I am worried that continued undertreatment may result in permanent nerve damage.

I want to have the correct treatment for my condition.

Send the letter to the GP. cc: the practise manager, your local MP, the local press, TV and radio. Make sure all copies have the cc: information so the GP knows that others are aware of your problem.

[Brownie49 in reply to fbirder]

Thank you fbirder for your reply. I'll definitely use the your wording.

[wedgewood]

Well if you can put up with the injections at the surgery , perhaps you could manage using an “ auto injector “ in spite of your needle phobia, obtainable at unionmedico.com , if you have no success with getting more regular injections from your doctor .. Read all about it . Can be used for I.M and subcutaneous injections I don’t use one ,but I’ve heard good reports about it . But it’s something to bear in mind if your doctor will not budge .But you should be able at the very least to get an injection every 8 weeks .

[Brownie49 in reply to wedgewood]

Thank you for replying. I'm going to look into those if I get no further with the doctors. I've looked into moving doctors but they're all full around here. I've been reading the many posts on here where they are facing the same issues too.

[Ritchie1268]

It always saddens me when I read so many posts like this.

Try what fbirder said and if that still fails to educate, the link Wedgewood posted is great.

I too have issues with needles but bought an auto injector from Union medico and never looked back.

Good luck!

[Brownie49 in reply to Ritchie1268]

Thanks Ritchie1268 it is sad that we are having to take our health into our own hands due to the lack of knowledge doctors have on B12/PA. Even after my letter giving them all the medical links and guidelines, they still refuse to budge.

If all else fails looks like SI is going to be the route I will have take.

[Ritchie1268]

It is very daunting at first especially having a needle phobia. But using the auto injector, I do it without thinking now.

Good luck

[Cherylclaire Forum Support]

If it was toxic, they would not give it to you at all.

And I would be dead by now !

[Maxie902]

Don’t give up hope. I was in a similar position to you, and have worked on my GP. It took about 4 months but he eventually agreed, having talked it through with other GPs in the practice, to give me my injections every 8 weeks instead of 10. I took the advice of Wedgewood, Fbirder and others on the Forum and quoted the BNF formula on the treatment cycle of 2 - 3 months, and they eventually agreed. I am sure they think I am just being over sensitive to fatigue and other symptoms, but we know how our own bodies should be functioning. It utterly amazes me how little is understood about the management of B12 deficiency in GP surgeries, and the misconceptions in particular around the blood serum levels. I hope you get the treatment you need. Best wishes.