Serum level lower after jags?

[kirsty1946]

Hi guys I had my loading doses at start of dec...roughly 2-3wks after stopping sublinguals and a level of almost 1700. Almost 1 month after loading doses my levels are 1444. Any thoughts? Also for 5 weeks I barely had a headache and now back to almost daily 😕. Do I push for monthly jags or more frequent? Xx

[kirsty1946]

Anyone help? Thank you 😊

[Gambit62 Administrator]

your kidneys filter out excess B12 from your blood and the rate of loss is higher when the levels in your blood are higher. If you were using sublinguals daily and now aren't then it isn't surprising that your levels are dropping - though using them as a measure of how you are doing now is pretty meaningless - they are measuring the amount in your blood rather than giving any idea what is actually happening at the cell level.

There is actually no scientific evidence that anyone has really been able to present to support the frequency of maintenance shots used in the UK - originally it was monthly when hydroxocobalamin was introduced and it still is recommended as monthly in some other countries that use hydroxocobalamin such as Germany. However, vagaries of the licensing system in the UK mean that at the moment hydroxocobalamin is only licensed for 2 monthly maintenance shots

Have you kept a symptom diary? Suggest that you do so and use that as part of your evidence to your doctor that you need more frequent injections ... and if you aren't a member of the PAS proper, please consider joining as they can give much more specific advice and support in dealing with your GP than this forum can

pernicious-anaemia-society....

If sublinguals were helping before you also have the possibility of going back to using them.

[kirsty1946 in reply to Gambit62]

Thanks for your reply. I didnt think the sublinguals were helping other than giving me a high serum level hence trialing the jags. I can only assume it was the jags helping my headaches as I am now back to almost daily which is draining. Will speak with gp on thursday about more frequent based on that and other neuro symptoms. X

[Gambit62 Administrator in reply to kirsty1946]

you could also ask if they can look at MMA which could clarify if the problem is a functional B12 deficiency

[kirsty1946 in reply to Gambit62]

Thank you! Will an MMA test be true after jags and not long off sublingual? I get mixed up what tests can get skewed?! Xx

[Gambit62 Administrator in reply to kirsty1946]

you are not looking at the test to diagnose a B12 deficiency but in relation to a functional deficiency so the criteria around using it will be difficult - and I don't know if testing for functional B12 deficiency has a listing but if you have left it long enough after a shot to be back to feeling deficient and aren't using the sublinguals because they aren't having an appreciable effect then it might help to clarify if you still aren't getting enough B12 at the cell level.

[kirsty1946 in reply to Gambit62]

Will certainly mention it tmw to gp. So hard at times to determine what is B12 related and/or thyroid related but I do know I had almost no headaches during and for a few wks after the loading doses. Now they are back along with the shooting pains in my ear and pins and needles x

[Gambit62 Administrator in reply to kirsty1946]

the thyroid and B12 can get very intertwined and can interact.

If you have a clear diary showing the period without headaches and when they return that may help in dealing with GP.

Hope they are open to listening and working with you.

[kirsty1946 in reply to Gambit62]

I was still very tired on the days without jags so I upped my thyroid T4 meds but now seem to have gone over range in T3 which has never happened on any increase of T4 so wondering if the B12 helped the conversion. That 5 wks without headaches is the longest I have gone in as long as I can remember! I put all my headaches down to thyroid before the jags x

[Gambit62 Administrator in reply to kirsty1946]

i'm definitely not an expert on thyroid but people do seem to report that they need to adjust thyroid meds downwards when they start on b12 shots.

[kirsty1946 in reply to Gambit62]

Aha! I might revert back to the dose I was on prior to jags then n see how that goes n beg doc to give me alternate day jags or even weekly and see. He did agree to trial even tho level was almost 1700 so think he will listen x