Low Holotranscobalamin results despite injection

[Fred3]

Hi all,

First of all thanks to this forum and association, it's a mine of information and support !

I subscriped to the PA society a couple of months ago and I'm new on this forum.

I have been diagnosed with PA back in February 2018 due to very low Holotranscobalamine (holoTC) value (< 5 pmol/L) and confirmation from endoscopic mucosal tissue sampling (=>Autoimmune atrophic metaplastic gastritis). holoTC was part of a complete serum test in order to find a cause to my symptoms (acid reflux, pins and needles in the fingers, memory losses).

Living in Switzerland, the first line treatment is the cyanocobalamin (CNCbl) 1'000 ug subcutaneous 1x/day during 5 days, then 1'000 ug subcutaneous 1x/week during 4 weeks, then once a month for life. After a couple of weeks, my pins and needles disappeared. After one month, my holoTC was at 32 (normal value is > 35 pmol/L), so my GP did not change the frequency of injections as the active B12 was increasing.

After 10 months of treatment with CNCbl, my holoTC was in same range as previously (27 pmol/L), my homocysteine value was at 13.5 (normal value is < 10 umol/L) and my GP recommend beginning again the charging dose (1'000 ug subcutaneous 1x/day during 5 days, then 1'000 ug subcutaneous 1x/week during 4 weeks). According to this article ( ncbi.nlm.nih.gov/pubmed/284... ), even CNCbl oral dosage is more effective (on those patients) compared to my results as they have holoTC in the the 156 pmol/L (after daily oral treatment) and patients with IM treatment once a week had holoTC in the 1'269 pmol/L range (values from 103-2'435).

As I still have memory problems after 10 months of injection, I'm wondering if the treatment is really effective and I will ask my GP to analyse again my holoTC after the 4th weekly injection (7 days after the last injection) to see if my holoTC increased or not and will ask as well to let analyse the homocystein and Methylmalonic Acid. Most likely, I will ask to receive Hydroxylcobalamin IM (also possible in Switzerland).

But before asking all this, I would like to know if other patients treated with cyanocobalamin would have holotranscobalamin results to share and if patients with IM can self-inject ?

Thanks in advance for your help 😊

Fred

[Gambit62 Administrator]

there is a lot of personal variation in how people respond to different forms of B12. Some people do actually find that cyanocobalamin works better for them than hydroxo. Generally hydroxo is retained twice as long as cyano but that's a generalism and there are a significant number of people who retain cyano longer than hydroxo.

After the B12 injections your B12 levels would have been off the top of the scale and would then fall over time as your kidneys remove the excess B12 - how quickly this happens varies considerably from person to person. The rate at which your kidneys remove B12 is higher when the levels in serum are higher. This would also be reflected in active B12 levels. So, it isn't a case that your levels had risen but that they had been astronomic and then fallen back to 32, then fell further to 27. In both cases the levels are quite low for someone on injections meaning that you probably do need B12 injections more frequently. There is no guarantee that this would be any different if you were taking hydroxocobalamin though it could be worth a try.

To be honest neither serum B12 or holoT are tests that can really be used to manage a B12 deficiency because they are only telling you the amounts in your blood, rather than directly measuring how your cells are using the B12 and its how your cells are using the B12 that counts - symptoms are a much better guide to when you need more B12.

[Fred3 in reply to Gambit62]

Hello Gambit62,

Thanks for your answer, I agree that symptoms should be considered but in addition of levels and the 4 relevant levels are the B12, HoloTC, Hcy and MMA.

I also agree that my levels are low and as I still have symptoms, I'll continue to self-inject my cyanocobalamin once a week and will ask to retest my values in a couple of weeks (including the MMA this time) + ask to be trained to self-inject IM for the hydroxocobalamin (applying the same frequency as previously used with cyanocobalamin, so that I would be able to compare for my body how it’s behaving and will see if it’s improving my memory problems).

I'll come back with new numbers in a couple of weeks.

[Gambit62 Administrator]

Please note - edited the post to ensure that the link to the article worked - very interesting article - though the study group is small but good evidence for those being pushed into accepting oral treatment rather than injections.

[Fred3 in reply to Gambit62]

Hello Gambit62,

Thanks for the edit (I don't saw any tool to add hyperlink in the text), but good that you could edit it.

For your comment about the oral vs Intra Muscular, if we rely only on the serum levels, both route of administration are doing their job (increasing of both B12 and HoloTc levels and decreasing the Serum Homocystein (Hcy) and serum methylmalonic acid (MMA) and also confirmed in the article "the hypothesis for noninferiority of oral in comparison to IM treatment had to be rejected" for the tested patients (who have been recruited as having "an indication for VB12 supplementation according to their GP’s estimation", meaning no details if they are vegan, have PA or B12 deficiency). They also concluded that there is a "need for a high-dose oral VB12 preparation in Switzerland".

Best study would be to see cellular levels (B12, HoloTC, Hcy and MMA), but I never saw such article, especially in humans.

[Gambit62 Administrator in reply to Fred3]

the edit is to leave a space before and after the link when you paste it.

The study is small scale - which is often the way with studies like this - which makes it quite difficult to draw general conclusions from it without replication of the results, other than to show that oral B12 won't work for everyone.

[wedgewood]

Just replying to your question about self-injecting by Intra -Muscular method . Yes , I believe that’s the method that members of this forum mostly use . I do . We obtain our Hydroxocobalamin from German online pharmacies . A longer needle is required for I.M.

[Fred3]

Hi wedgewood,

Thanks for your answer and "happy" to see that most of the users, if self-injecting, are doing this on their own. As in Switzerland, both cyanocobalamin and hydroxocobalamin are available, I'll get a prescription.