vitamin b12 and d deficiency

[alex27islay]

just had my quarterly b12 jag but feel like I need them more frequent, doctor has halved my vitamin d from 1600 to 800 and I feel worse than ever, I feel like I have to fight for every small thing from my doctor. I have Asperger's as well so doctor doesn't care about anything I say.

[fbirder]

Ask your doc to check the entry for hydroxocobalamin in the British National Formulary (BNF). It changed last year from 'every three months' to 'every two to three months'. So there's nothing to stop them giving you injections every 8 weeks.

[alex27islay in reply to fbirder]

thank you I will do that first thing on Monday

thanks.

[Nackapan]

Grassroots have a good website on vitamin d.

Doctors guidance is 800ug for a maintenance dose.

I was only once prescribed vit d at a level of 20ng/l range 20-50 which is quite low

Do you know what level you are feeling okay at?

You can easily buy it cheaply.Pharmacists are helpful. Have it checked on your next blood test .

Hope you can sort more regular injections.

[alex27islay in reply to Nackapan]

hi thanks for your reply, my last test showed the I was 18ngl but doctor death has refused to give me another test for six months

I take extra vitamin d and b12 tablets but because I had a gastric by pass I don't absorb a lot of the stuff that I eat.

thanks again.

[Nackapan]

P.s take your supplement with your main meal with fat in it . Tou will absorb more . You may know this

[Sleepybunny]

Hi,

Link to BNF information

bnf.nice.org.uk/drug/hydrox...

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Writing a letter means face to face confrontation can be avoided.

If you feel that the GP is not taking notice of you then do you have someone you can take with you to appointments who would speak up for you?

Have you looked into whether an advocacy service might be able to help you?

nhs.uk/conditions/social-ca...

I am not medically trained.

[alex27islay in reply to Sleepybunny]

thank you for your advice I really appreciate it, I have been fighting with the doctor for the last couple of years, I don't have anyone to take with me I don't think that people realise how much of an impact that having incorrect vitamin levels can effect people.

thank you again

[Sleepybunny]

Hi again,

1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months

You appear to have been put on the first pattern if your jabs are every 3 months.

My understanding (I'm not medically trained) is that you should be on second pattern if you have any neurological symptoms.

Neurological symptoms associated with B12 deficiency include

tingling

numbness

pins and needles

burning sensations

insect crawling sensation

tinnitus

muscle twitches

flickering eyelids

restless legs syndrome RLS

clumsiness

dropping things

bumping into things

strange gait (unusual way of walking)

word finding problems

balance issues

brainfog

There are many other neuro symptoms that can be associated with b12 deficiency besides the list above.

Does your GP have a list of all your symptoms, especially any neurological ones?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Link about writing letter to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

Referrals

If neuro symptoms present, have you been referred to

1) a neurologist?

2) a haematologist?

I hope you get the level of treatment you need.

[akanari]

I have confirmed pernicious anemia and I have found a sublingual tablet that works for me (Jarrow methyl B12 1000mcg +methyl folate 400 mcg) It is a high dose and I let it dissolve under my tongue for a long time every morning so it can be absorbed through the walls of the blood vessels. It works!!! It is not expensive and it is easy to order online. I know this does not work for everyone. I wonder if the size and structure of the sublingual blood vessels vary from person to person. But I think it is worth trying if you are struggling with your doctor and feeling ill.