So had my dr's appointment last night, i went in feeling very unwell my legs had gone hands & feet were burning with pins & needles feeling confused so glad i had my partner with me.
So the dr has said i will finish my loading B12 jabs then have them every 3 months. he did a memory test with me & i failed it so he has referred me to a memory consultant to have further tests & also had more blood tests this morning with my b12 jab weirdly i had another B12 test...even the nurse was confused why as i am having the jabs, they are testing my Vit D as i had extremely low levels a few months ago & had to have 6 weeks 1 weekly dose of 15,000 mg oral liquid stuff which was rank..not sure what else i had tested as i have forgotten. Can vit D levels effect Vit B?
I'm still confused as hell with all this so any advice would be great, feeling a bit better this morning too thankfully. i thank you wonderful people in advance.
Donna xx
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MissD1503
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"dr has said i will finish my loading B12 jabs then have them every 3 months"
In UK, patients with B12 deficiency with neurological symptoms eg pins and needles, should have loading injections every other day for as long as symptoms continue to improve and then injections every 2 months.
Not having correct levels of treatment could lead to further deterioration and the possibility of permanent neurological damage including problems with spinal cord.
Info on UK B12 treatment is in
1) BNF Chapter 9 Section 1.2
UK GPs will probably have a copy of BNF on their desk. it's also possible to get own copy of BNF Britsh National Formulary from good bookshop or internet retailer.
BSH Cobalamin guidelines makes it clear that testing b12 levels after B12 supplementation has started is irrelevant. There is something in fbirder 's summary of B12 documents about this. Link to summary in third pinned post on this forum.
".even the nurse was confused why as i am having the jabs,"
Have you had a diagnosis of PA?
What has doctor said he thinks is causing B12 deficiency?
Might be worth seeing what's in your medical records?
Thanks Sleepybunny...the ironic thing is he himself had B12 jabs as he is Vegan so should know all this, i tried to say that i should not stop having B12 but he just huffed & puffed & said well you'll have them every 3 months for life no reason what the cause is i was so unwell last night i just wanted to get out & go home to bed. I hope the memory consultant will listen to me more he/she must know about the B12 deficiency.
being vegan doesn't mean that you need B12 shots - it doesn't stop you being able to absorb B12 taken orally and the treatment for a dietary deficiency is 50mcg tablets of B12.
If he is on B12 shots then it must be because he has a B12 absorption problem - or because he's been treated incorrectly for a dietary deficiency.
Think he is very confused himself about B12 deficiency, its causes and treatment.
Sorry you have had such a bad experience - the memory referral might give another opportunity to try and get someone to explore B12 though you may get the 'can't be B12 because you are on shots' response but may be it will be someone who actually knows their B12 facts.
In addition to the good advice Sleepybunny has given you having low Vitamin D will make you feel poorly but I'm not sure whether it gas any effect on B12,
It would be good if your partner could print off the relevant section of the N.I.C.E guideline where it says that loading doses should continue "until there is no further improvement!"
You still have neurological involvement
Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
I know you say you can't remember but can you ask whether your Folate level was checked at the same time as the completely unnecessary and useless B12 test. I'm not surprised the nurse was puzzled.
I have just used the Pure Science 5000mcg patches, (one every day behind the ear) while on holiday and they really worked. I felt better than I have for months 😊. Hope they make a difference for you too.
Personally I have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember and I have had B12 injections every month for 45 years so I don't think a supplement at that level will do you any harm. If in doubt ask the pharmacist for advice.
It was a complete waste of time testing your B12 - unless it came back very low which I presume it didn't - as your injections were bound to skew the result.
I have ordered some Folic acid should be here today, i also have the memory consultants secretary ringing me again today to make an appointment they are going to come to my house i told them what has been happening & seems=ed really concerned & felt she was really listening to me.
had to have 6 weeks 1 weekly dose of 15,000 mg oral liquid stuff
Did you really get a prescription for 15,000 mg liquid vitamin D? Or was it 15,000 iU liquid vitamin D? I suspect it was iU. If I'm right then you were taking just over 2000 iU per day, which for many people is just a maintenance dose, it isn't enough to actually raise your levels much at all.
You can buy far higher dose vitamin D capsules e.g. 5000 iU or 10,000 iU capsules, from Amazon or other supplement sites. These capsules are recommended on the Thyroid UK site by their resident vitamin guru :
Sorry yes it will be IU was ages ago i can't remember & i'm rubbish at medical measures ect, & i'm sure it was 15,000 per pipet & may of been higher i just can't remember eek xx
If you are a member of the Pernicious Anaemia Society I would ask them to advise you regarding your letter or intervene on your behalf with the doctor.
I don't know if such a letter would be treated as a "complaint" - perhaps Gambit62 could comment on that.
Its difficult to predict how people are going to respond to things - it doesn't come across as formally making a request but it also doesn't come across as being clear about the action you want to be taken.
MissD1503 - couple of suggestions that might help.
a) try to keep the letter short and to the point. Be clear about the outcome you want to achieve and state this.
b) if it was me I'd be including extracts from other information as appendices or annexes and telling the GP where they can actually find the information provided.
c) avoid comments in brackets - they can come across as being digs.
As clivealive suggests - try to contact the PAS for support on how to tackle their GP - they have a lot more experience than I do. You may need to join though to access services and help
may have some ideas on how to structure letter. The person who runs website can be contacted by e-mail. Contact details on website.
I agree with Gambit62 's suggestion to keep letters short.
If GP feels under time pressure he/she may not be willing to read it all.
For example rather than writing out symptoms in letter, I gave my GPs a copy of PAS Symptoms Checklist with all my symptoms ticked plus I added any symptoms not on list.
Thank you for the advice i really don't know what to say i just went on a tangent when i typed it up i will defo sort pas membership out too i thought I'd already done it but i haven't x
Hi I'm sorry you are feeling so unwell. I wanted to chime in about the excess urination that you are having. I have a condition called diabetes insipidus it is caused from a vasopressin deficiency in the pituitary. This is an extremely difficult thing to get diagnosed as most doctors have no idea about it. I was lucky to see a neuroendocrine specialist at UCSF that was able to help me get it sorted. You may want to check into it as the increased sodium and dehydration can cause a lot of overlaping symptoms with the b12 deficiency. I hope this helps you on your journey to health.
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i told them what has been happening & seems=ed really concerned & felt she was really listening to me. 
Is B12 196 normal?
B12 and anaemia
Injections v sublingual spray 
