Fatigue GP Update

[Maggie333]

Hi everyone I am just back from the doctors. They are giving me injections twice weekly for two weeks then 3 monthly thereafter. I am also being referred for an OGD. I really do hope this makes me feel better, I am just grasping at straws. Thanks for all your advice.

[clivealive Forum Support]

No Maggie333 that's the "last straw" you need to grasp at as you will hopefully be on the right road to improvement in your quality of life once your treatment begins.

However it is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts work repairing any damage done to your system caused by the deficiency.

Do you know what your Folate level is? This needs to be "healthy" as it is essential to process the B12 you are having injected and it will get "used up" along the way.

I'm not a medically qualified person but one who has had P.A. for 45 years yet am still "clivealive" at 75.

I wish you well for the future

[Maggie333 in reply to clivealive]

My folate is 7.3, range is 3.9-26.8 ug/L

[clivealive Forum Support in reply to Maggie333]

That's a bit low Maggie333 I would take that up with your doctor as Folate gets "used up" processing the B12 and also mention the point Hidden made about the loading doses as per the below

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

Sorry, my brain wasn't in gear when I read the frequency of your injections in your original post

[taka Administrator]

Hidden Yes you are correct. Why are some GPs so clueless about B12?

Maggie333 are you in the UK?

Have you had an anti-intrinsic factor antibody test to see if pernicious anaemia is the cause of your low B12? If so you should be recieving injections every other day until no further improvement then injections every 2 months as you have neurological symptoms.

Guidelines: pernicious-anaemia-society....

BNF (a copy of which should be on your doctors desk): evidence.nhs.uk/formulary/b...

Also have a look at the links on your previous post as many of these may be helpful to you.

[Maggie333]

Hi guys! I questioned the GP why she wasn't giving me injections every other day as stated by the NICE Guidelines and she just shut me down. I am experiencing most of the neurological symptoms stated but she wasn't interested.

[pvanderaa]

Start a logbook and assess how your symptoms get better and when they start to reappear.

You may feel like you are on a roller coaster ride of ups and downs.

You may also notice new symptoms from the jab itself.

Discuss with your GP and get some buy in because you have to get your GP past the " I've got a hypochondriac on my hands stage".

You may eventually need more frequent injections and your GP needs the evidence and data to justify more frequent injections.