More injections required- any tips?

[Gilly]

I have been getting b12 injections every 8 weeks for about 3 years after a struggle with the GP. I have now changed jobs and moved areas the new GP won't inject me every 8 weeks stating that 12 is sufficient. I had a blood test straight after the last injection. I am now week 10, I have an appointment with him tomorrow and feeling totally exhausted headaches dizzy etc. how can I make him see that I could survive only 8 weeks but any longer I just can't function sleeping 9/10 hours a day more if i could?

[wedgewood]

Quite dreadful for you ! I have also had problems getting enough injections . But in the end I had to give up trying and self-inject. I did tell the doctor. I wish you all the best for tomorrow. If you have no luck ,come back here should you decide to go down the self-injection route, and you will get all the help that you need.Best wishes .

[Lisahelen]

Can only suggest you tell him you feel ill, listing your symptoms and if he refuses to acknowledge that it is lack of b12 which is more than likely causing them, then he needs to find another reason for the symptoms.

[jillc39]

oh dear oh dear - how many times are we going to here this. poor Gilly - my heart goes out to you. I am in the middle to a struggle with my gp - so no tips I'm afraid, but my heart goes out to you. let us know what happens tomorrow.

[salsadancer in reply to jillc39]

Hello Gill so sorry to hear that you are having problems getting your injections when you want. I am very fortunate that I have great GP's. I can go whenever I feel my body needs it, which is around every 6-7 weeks. I suggest you see another GP within your practice, explain fully how your body is feeling, what symptoms you are experiences, until one of them understands that you do need your injections when you say you do. Ask them to give you a trial period first to see how it goes if they still not agreeing for you to have it earlier than 12 weeks.

I wish you well in your health, and good luck with your GP'S.

[salsadancer in reply to salsadancer]

Sorry Gilly did have the y when typing out your name, when clicked on it after then realised it was not there....sorry predicted text

[Gilly in reply to salsadancer]

Mine is the same 😊

[LtAngua52]

Why don't you go on the pernicious anemia society website and print out the information on it written for patients to give doctors. It may sway him. If not, call the PA society and Martyn Hooper may be able to help you. Good luck.

[clivealive Forum Support]

Hi Gilly you say "I had a blood test straight after the last injection."

Was this at your "new" doctor's suggestion? Any GP worth his salt will know that the test results will be skewed because of the B12 injections and are not necessary according to the BCSH Guidelines. They say:

"Maintenance treatment for patients presenting without neurological deficit is

with hydroxocobalamin 1000ug i.m. every three months. Those with initial neurological deficit should receive hydroxocobalamin 1000 ug i.m. every two months.

No further testing for cobalamin levels is required."

I guess that if you are presenting neurological deficit you are entitled to your 8 week regime.

I'm not a medically qualified person, just a fellow sufferer, but surely your notes from your "old" surgery would confirm the frequency of your injections.

As LtAngua52 says print out the "AN UPDATE FOR PRIMARY HEALTHCARE PROFESSIONALS" which can be found in the library section of the Pernicious Anemia Society website. You will need to be a member to access it and many other helpful documents and article. To join costs only £20.00 and like P.A. that's for life.

Please don't "give up the fight" because if you succeed in "educating" your new Doctor you'll be helping every other patient of his that comes along with the same problems.

I wish you well for the future,

[Gilly]

Neuro syptoms are like the headaches dizzyNess exhaustion?

[LtAngua52 in reply to Gilly]

On the PA website it lists all the symptoms, physical, neurological and psychiatric. Neurological symptoms are numbness, pins and needles, tingling, memory loss, confusion, speech problems, imbalance etc. The longer you have these left untreated the greater the likelihood they will be permanent. After about 15 years being deficient I've only been treated the last 3 months and have some permanent neurological damage. So, don't end up like me, as @clivealive says, don't give up the fight, you have too much to lose.

[Marcieb]

I totally feel for you. With alot of struggling, paperwork shown to my GP and a letter to him from my psychiatrist, I got mine down to 6 weeks. For the two week before my injection I get the mouth ulcers back, want to go to sleep all the time, my head feels fuzzy and crammed with heavy cotton wool, sort of nausea, almost a headache across my temple and feel just so ill. I have done a post recently to say that another psychiatrist has written to my GP telling him I need a Neurologist to get the treatment I need for my memory which has gotten so much worse over the years. I am having my injection tomorrow, Weds, it should have been last Friday but I was so ill I just could not get up there. Today I feel so bad it is just like when first diagnosed. Get on to the B12 Deficiency Symptoms site and get the information to your GP and all Consultants of whatever, even 6 weeks is better. In Europe, China, Australia, America they treat the patient individually, doses are frequent and higher dosage. Barely a GP in this country has more than a very basic knowledge. I am going to write to my MP to see if he might take up the cause. Look at that B12 site, it tells you so very much, this is what the psychiatrist bothered to take time and digest, he now says he is backing me all the way with his total support and I have seen the letter he wrote to my GP, I just hope he won't ignore it like others. Keep on and on pushing, throw information constantly at your GP, it has taken me years to get just one person to really bother, hopefully his letter will make a difference. Take care, chin up, keep on, and this site is full of fellow sufferers who help each other and information you can keep on throwing at your GP till he has to help you. Good luck Marcelle x