RESULT OF THE LETTER: Delivered the... - Pernicious Anaemi...

Pernicious Anaemia Society

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RESULT OF THE LETTER

may61 profile image
6 Replies

Delivered the letter to doctors surgery Copy for him and the practice manager It was a letter about the treatment I had received and included some of the phrases which had been suggested Included BNF guidelines and four pages of symptoms I had had on the days when I had been to see him Took a friend with me who has a little bit of knowledge We had a good consultation he listened to the concerns Explained his reasoning OUTCOME Reinstated another course of injections over the next two weeks with a referral to neurology cos something else is going on ,that needs to be got to the bottom of .Thankyou to everyone who has given me help and advice over the past few weeks I am so glad I found this site and I took the step to ask some of the questions I needed some answers to. Will let you know what happens At least I feel I am on the first rung of the ladder and can stop worrying about getting treatment

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may61
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Foggyme profile image
FoggymeAdministrator

Brilliant news May61. Well done for persevering.

Sincerely hope that your GP is following your two week 'loading dose' course with the appropriate follow-up B12 regime once you have had the 6 loading doses? 😀. (Should be every other day until no further improvement because of your neurological symptoms - perhaps for many months).

Hope you begging to notice some improvement very soon. Some people feel the effects very quickly but for some it take a little longer, so please don't get downhearted if you're one of the people for whom it takes a little longer. Just keep having your lovely health giving, life saving, very splendid B12.

Hurrah 😀😀

Marymary7 profile image
Marymary7

Well done you...it's not easy. Good luck to get better.

fbirder profile image
fbirder

Yeah! Congratulations on persevering and taking control of your treatment.

clivealive profile image
clivealiveForum Support

Hi may61 I bet you're glad you weren't "reticent" and have managed to get your entitled "duty of care" from your GP.

All the very best.

Sleepybunny profile image
Sleepybunny

Glad to hear you got another course of injections.

If you have neuro symptoms, loading doses should be every other day until symptoms stop improving before moving on to maintenance doses every 2 months.

"Reinstated another course of injections over the next two weeks "

The BCSH Cobalamin and Folate Guidelines page 8 mentions the possibility of a review for people with b12 defic with neuro symptoms after three weeks of loading doses but as far as I know the BNF (British national formulary) Chapter 9 section 1.2 does not mention a review after 3 weeks. A bit puzzled as to why GP is only giving loading doses for 2 weeks. Has your GP seen BCSH Cobalamin and Folate Guidelines?

I gave my GPs a copy of the "BCSH Cobalamin and Folate Guidelines", a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" and I take a copy of fbirder summary to appts(link in third pinned post).

I am not a medic just a person who has struggled to get a diagnosis.

LtAngua52 profile image
LtAngua52

Fantastic news! :-)

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