Sublinguals only?: After finding out my... - Pernicious Anaemi...

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Sublinguals only?

Hanneke12
Hanneke12

After finding out my B12 levels were at 157 a month and a half ago, today I got my final booster shot of 10 GP-prescribed hydrococobalamine HCl 1 mg (self-injecting twice a week over 5 weeks). During the first 3 to 4 injections, they made me feel worse. And to be honest I'm still only feeling slightly better actually.

So I asked my GP what to do after the 10th shot. She said to either take bimonthly shots, OR take sublinguals of methylcobalamine 1 mg daily. I chose the latter, because I am going to travel a lot and would rather not take needles and ampules with me. Also, the injections are painful and I'm not (yet?) seeing much improvement with them.

Anyway, because I didn't feel well and I was curious, I already got the siblinguals and have been taking them for the 3 days in between the 9th and 10th injection and for the first time was starting to feel a bit better - not great or anything, but, well: hopeful! Today, as I was having the injection, I didn't take the sublingual and I feel wobbly again.

So, my questions: Are there any of you who JUST use sublinguals (so no injections) and who feel fine with that? What are the advantages of injections to sublinguals? Can it be that my body simply likes methyl better than hydroxo? Or would you say that I should not be done with the injections yet as I just am slightly starting to see improvements (I've been reading that a lot on this forum)?

At a loss here... Thank you for responding!

9 Replies
oldestnewest

I’m not alone in finding sublinguals do absolutely nothing for me.

Do you know the cause of your deficiency? I feel it’s not caused by a lack of absorption then sublinguals will work perfectly well as most of the dose is swallowed.

Hanneke12
Hanneke12
in reply to fbirder

Hi fbirder, I've asked for that but my doctor sees no point in finding out. She just said you'll simply need bimonthly injections from now on. Or sublinguals daily...

It makes sense what you say. I might not have an absorption problem/PA. But the strange thing then is why the injections I took appear to not work (or at least much less than the methyl?)

I have a bad headache and dizzy spells for months now (besides fatigue and anxiousness for years) and I'm feeling desperate.

Guess I'll experiment more with the sublinguals in the next weeks/months anyway. Was just curious about the possibilities of methyl being somehow better received by my body than hydroxo.

Thanks for replying. Hope to get more input/experiences so I can feel like I'm taking the right measures to feel better soon...

Hi,

Lots of B12 info on these websites, some info may be UK specific.

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members around world.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

Stichting Tekort (Dutch B12 website with English language articles)

stichtingb12tekort.nl/weten...

B12 Awareness (USA website)

b12awareness.org/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Blog post from Martyn Hooper's PA blog about effectiveness of oral B12 treatment for PA

martynhooper.com/2016/08/02...

I am not medically trained.

Your B12 was very low Hanneke and maybe needs time with adequate treatment to repair damage - Sally Pacholok, "Could it be B12?", recommends both injections and supplements.

Hanneke12
Hanneke12
in reply to Polaris

Ah, so I should have had both to start with... I will check out the book, thank you (both Sleepybunny and Polaris)!

And I guess I will have to (as my GP is on holiday for 3 weeks) see what just the sublinguals do, and if they do not suffice, go back to my GP and get more injections.

I somehow sense that both are a good idea... (Though I am hoping I'm lucky enough that only the sublinguals will do the trick of course.)

Thank you again...

Hi again,

Might be worth tracking down any national/regional guidelines on b12 deficiency treatment for whichever country you are in.

Link below is for a UK B12 document.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Use 3000 adeno + 3000 hydro +800 folinic acid + 250 methyl under my top lip against the top gum. They take about an hour to dissolve. Makes a great difference. Just let them sit there until they are gone.

Hanneke12
Hanneke12
in reply to Foretmed

How often? Every day?

Foretmed
Foretmed
in reply to Hanneke12

Yes Seeking Health has them free shipping in the U.S. prices are good as well.

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