Great news! I can have 2 weeks of loading doses, but can I ask your opion please on spacing these with Easter please?

[Jo5454]

Hi, firstly once again thank you so much for all of your help. I have been told I can have 2 weeks of loading doses followed by monthly injections and see how my symptoms improve. ( following low Active B12 results/ high MMA).

My Doc is also going to do the IF test, plus check thyroid and ferritin again.

It was felt I could have one injection Thursday only there wasn't an apptment so have it for Weds, but obviously with Easter it will mean two next week, then 3 the week after. After getting home and thinking about it, it will mean a week between the first 2 doses. Do you think I should cancel this first odd one, and ask for it the other end, so there is less gap please?

I desperately want to start, but not if it means that first one will not be wasted. Especially as I was hoping for 3 weeks because of the neurological symptom?

Any advice gratefully received once again, thank you...

[deniseinmilden]

In my opinion I should start ASAP and think spacing them out will give your body a chance to adapt / cope better with them.

I had mine spaced out like that last year and think it was a good thing.

[fbirder in reply to deniseinmilden]

Yup, agree 100% with deniseinmilden. The most important thing is to get that stuff inside your body ASAP. It will make very little difference if you change the spacing between jabs.

[Jo5454 in reply to fbirder]

Thanks fbirder, sorry for slow reply , had any migraine, dodgy eyes, so have had to avoid the computer. Took your advice thank you and got started, it meant a week between first two injections, but yes thought it better to get on. Have had 3 now, not noticed any changes yet, but guess it's early days! Am going to see if I can have a 3 rd week? Dr said monthly injections, but the nurse said they'd be 2 monthly, so need to check that too. Had the IF test Weds, along with thyroid and ferritin. Asked for folate too and parietal cell, but think I only got the folate! Really learning lots from the Martyn Hooper book, thanks for the rec. have just read on here you have had some positive news from a test, so really hope this helps you.

Thanks again Jo

[Sleepybunny]

"Especially as I was hoping for 3 weeks because of the neurological symptom?"

Has the GP explained why they are not giving you extended loading doses which I believe the BNF recommends for those with B12 defic with neuro symptoms.

Following links may be helpful.

b12deficiency.info/b12-writ...

pernicious-anaemia-society....

See "Summary of the guidelines for the diagnosis and treatment of cobalamin & folate disorders".

It clearly says in this that treatment of Cobalamin (B12) deficiency should follow the BNF (Bristish National formulary).

patient.info/doctor/pernici...

Management section in above link contains similar info to BNF.

[Jo5454 in reply to Sleepybunny]

Thanks once again Sleepybunny, I am going to try for a 3 rd week this week, so will use the info you've kindly given. Think my injections will be 2 monthly now, have to check that too. Am waiting for some blood test results which should help assess folate and ferritin, plus IF and thyroid.

Thanks also for your rec for Martyn Hoopers book...am learning a lot! 

Hope you're doing well at the moment...thanks again...Jo

[Sleepybunny]

It might be helpful to read the whole "BCSH Cobalamin and Folate Guidelines" before you see your GP. Sadly some GPs are not aware of these BCSH Cobalamin Guidelines. I gave  a copy of the BCSH Cobalamin guidelines to my GPs.

Have you read the following?

bmj.com/content/349/bmj.g5226

ukneqas-haematinics.org.uk/...

Its possible to obtain a copy of the BNF (British National formulary) eg from a popular online retailer.

bnf.org/

Local B12 Deficiency Guidelines

Another thing I found out is that each NHS area in UK tends to have local guidelines for the Management of B12 deficiency. Some of these local guidelines have not been updated since the BCSH Cobalamin guidelines came out and may differ in some details. I have had problems with medics referring to local guidelines and not being happy when I pointed out that these local guidelines have been superceded by the BCSH Cobalamin Guidelines.

Do you know what your local guidelines say? Local guidelines for B12 deficiency can probably be found on local NHS website, or by an internet search or by a FOI (Freedom of Information) request to local NHS website.

[Jo5454 in reply to Sleepybunny]

Thank you once again Sleepybunny, these are so helpful I really appreciate the time it must take for such detailed answers.

Have just had some results in and found ferritin has dropped from 142 last August ( after supplementation to bring it up from 12) down to 24, so looks like that needs sorting again. Had a feeling it had dropped so asked for a retest. Also TSH has risen from 0.42 to 3.18 so is nearing the upper limit of 3.5and f4 lowered to 13, have yet to find out folate and IF result. But on the up my fasting glucose has dropped from 6.3 to 5.3 and bizarrely am eating a little bit more sugar than when I'd had the first test!

Oh, well on to this weeks challenges. Had 4th injection today, not seeing much of a difference yet apart from a spottier face, guess it's early days! Thanks again...Jo