Confused...

[KCxo]

I finally saw a Doctor today after waiting for 4 weeks to get an appointment. He is not my usual GP, so I had to go through everything with him, explaining that I had a loading dose of B12 injections in December, another in February, followed by 4 weekly injections. He said 16 injections in 3-4 months is alot and that I should be "rattling" with all the B12 in my system, but I'm not. I feel awful.

I wrote down all my symptoms including fatigue, confusion, dizziness, tingling in back/scalp/tongue, twitching in thumb, cold hands and feet, numbness in pinky finger, migraines etc. Didn't get a chance to show him because appointments are meant to be 10 mins and it ran over because he kept going through my previous results.

"You must have a crap diet." is all I got from him. My diet has done a complete 180 since August (which is way before I was tested in November) so I think he's just taking the easy route and blaming this on my diet instead of looking further into things. He also said with an initial B12 level of 137, I should have just been put on the tablets, but I have had them before and was on them twice daily for about a year and they didn't work. The strange thing is that my levels pre-injections was 137 and after my loading dose, it fell to 93.

Nothing was explained to me (I feel like I did all the explaining, to be honest) so I'm really confused. He said I have to go for a new blood test so we'll see then, I suppose.

[healthyKt]

Are you taking co-factors and testing Folate, Ferritin and Potassium? If taking B12, you need these, and B complex and vitamin C from what I have heard. See the B12 facebook group guidelines in Files section. Lots of people reporting feel awful having B12 until take these also. Look for Georgia who gives great advice.

[KCxo in reply to healthyKt]

They tested my ferritin, folate and intrinsic factor. Folate was a bit low so I've been on those tablets since day 1, still not helping.

Thanks for the pointers!

[Gambit62 Administrator]

Sorry but it sounds like you spoke to one of the many GPs out there who really doesn't have a clue what a B12 deficiency is or what can cause it,so not surprised that you found yourself having to do all the talking.

When exactly was the post loading dose measurement done? I'd be inclined to believe there was something seriously wrong with the test if it was immediately after the test. If it was a few months after the test then it wouldn't be impossible and would be further evidence that your body just isn't capable of storing and recycling B12.

The rate at which you lose B12 by it being filtered out through the kidneys and passingout of your body in urine increases the higher the level of B12 is in your blood.

People vary a lot in how 'efficient' their kidneys are at doing this, so it certainly isn't beyond the bounds of possibility that the B12 could be removed in the few months after an injection - and even within a month or a couple of weeks of an injection if you are one of those individuals who removes it quickly.

Really hope that you manage to see your normal GP next time - or someone who does actually know something about B12.

[KCxo in reply to Gambit62]

Yeah, didn't seem like he knew what he was talking about. There is only one other GP I can see, so, fingers crossed that she'll be a bit more helpful.

My first loading dose was the two weeks before Christmas; my last injection in that round was on Christmas Eve. I was scheduled to have bloods taken around the 4th of January, but I have crappy veins and the nurse was bored of sticking me with needles to no avail, so I had to go home and book my appointment with the phlebotomist for the following week.

According to my results, my B12 level was at 93. By the time I got an appointment to see a GP about my results, it was early February, so when she saw that it was still low, she told me to go for another loading dose, followed by 4 weekly injections... so 10 injections over the course of 6 weeks.

I'll know more once I get an updated blood test. Hopefully it goes well and I get something sorted.

[Gambit62 Administrator in reply to KCxo]

Does sound as if your kidneys are really efficient! Will be interesting to see what the next bloods come back as low again - they probably will though not quite so low if there isn't so much of an interval between shots and blood test.

Sounds like you need to stock up on information that demonstrates that its symptoms that count and not blood results just incase the second set of shots don't do the trick and keep all digits crossed that the GP is willing to listen and learn if need be

The rate at which B12 is removed does vary with the type of B12 - presume you had hydroxo. Although the majority of people retain hydroxo longer than cyano it may be that you retain cyano longer and methyl might be even longer - one of those try it and see scenarios - though I'm not sure injectable methyl is available on the NHS.

Another possibility to look at might be lower doses more frequenetly - given that the rate of extraction is higher if the amount in your blood is higher, as it might be a bit more efficient.

Have you tried any other forms of supplementation? Might work as part of a lower dose more frequent strategy.

[KCxo in reply to Gambit62]

I've been on cyano - both tablet and injection versions of it. Thanks for your help.

[Gambit62 Administrator in reply to KCxo]

In that case might be worth looking at hydroxo - though if you are in the states it can be difficult to get hold of.  methyl might be easier

[Sleepybunny]

"They tested my ferritin, folate and intrinsic factor."

Did they do a full blood count(FBC) as well? I find it helpful to look at MCV and MCH on the full blood count. If your MCH and MCV are high it could indicate the possibility of macrocytosis.

Evidence of macrocytosis might make a GP consider increasing B12 injections.

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

patient.info/doctor/full-bl...

labtestsonline.org.uk/under...

[KCxo in reply to Sleepybunny]

They do usually do a FBC, but they never mentioned it when I got my results, just said my B12 and Folate were low.