Feedback re advice to not self inject... - Pernicious Anaemi...

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Feedback re advice to not self inject posted yesterday

smilingjane profile image
17 Replies

Hello all

Regarding my endo advice not to self inject explained to me today is that he is concerned about risk of infection.

He advised me today to carry on with bi monthly injections at the surgery whilst at the same time taking 4 sprays of the sublingual daily. 2 in the morning and 2 in the afternoon. Dr M says that injections go straight into the system and so leave quickly too. So advised the twice daily sublingual B12 to keep B12 flowing..

🤗

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smilingjane
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17 Replies
Thyb profile image
Thyb

Sounds good to me...:-)

JanD236 profile image
JanD236

That’s interesting that your endo at least seems to acknowledge that an injection won’t last you the 2 months between injections.

Other than that I’m less impressed with his advice. If you take the same hygiene precautions that your GP practice nurse takes then you’re no more liable to infection whether you si or have the injection administered by the nurse.

As far as the spray is concerned, hopefully you’ll be one of the people who can benefit from the it. However, from what I’ve read on this forum the B12 molecule is too large to be absorbed sublingually and therefore you’ll only absorb what your body is able to via your digestion. If you have PA this may be nothing at all or possibly a tiny percentage passively. I know that the spray does nothing for me but I have read of others on this forum using it so I hope that it does help you.

smilingjane profile image
smilingjane in reply toJanD236

Hi Jan

Thanks for your response. It is tricky isnt it when there are so many people with different individual experiences.

I understood that if you took the b12 sublingualy that it us absorbed through the membrane in the mouth and that it hit the bloodstream without having to go through the digestive system?

I'm hoping so anyway 🤔😊

JanD236 profile image
JanD236 in reply tosmilingjane

Sorry to say that opinion that I’ve read and trust on this forum is that the B12 molecule cannot be absorbed in the way that you hope.

smilingjane profile image
smilingjane in reply toJanD236

Oh dear ...

So much to read and I am still learning....

Did you find that injections worked quite quickly for you?

😊

JanD236 profile image
JanD236 in reply tosmilingjane

Tbh I didn’t realise I was feeling ill, just tired and thought I was getting old. I hadn’t been to my Dr complaining of anything.

I was lucky in that I’d had a positive test for gastric parietal cell antibodies which an (NHS) allergy specialist had ordered when I suffered anaphylaxis caused by an oral allergy.

Nothing came of that positive test until about a year later when my GP tested my B12 levels at the same time as other blood tests being carried out. That showed low B12 and the lab then automatically tested active B12, that was below range, which confirmed my B12d. I subsequently had a positive IFAb test.

A different GP then prescribed me a B12 injection every 2 months (no loading doses) and I can’t say the first few made me feel any different. After a while though I realised I was feeling better for a few weeks before feeling tired and old again. My GP then allowed monthly injections and gradually I started si weekly by which time I realised I didn’t have to drag myself through each day in a fog of exhaustion, forgetting words and what I was talking about half way through a sentence and I recognised that I’d also suffered from tingling fingers and tinnitus. I just hadn’t realised all these things at the time of diagnosis.

I now si twice weekly and feel fit and healthy and as good as I’m going to be I think. So to sum up, there was no eureka moment of feeling better, it was gradual over 2-3 years.

Sorry to have waffled on!

smilingjane profile image
smilingjane in reply toJanD236

Thank you Jan

No you havent waffled. So good to hear that the injections work! And that you recovered.

I am really feeling a slight betterness! is that a word?!! My head feels a little clearer, I wasnt understanding people properly, and searching fir the right words all the time, a nightmare .. I am hoping the CF will get better. So I can start walking again and doing normal stuff.

🙏

Frenchiebabe profile image
Frenchiebabe in reply toJanD236

B12 from food is absorbed in gut - sublingual is absorbed instantly therefore does not need stomach

JanD236 profile image
JanD236 in reply toFrenchiebabe

Opinion that I’ve read and trust on this forum seems to be that the B12 molecule is too large to be absorbed sublingually. It will therefore be swallowed and is at the mercy of the digestive system.

smilingjane profile image
smilingjane in reply toJanD236

I have had again research on here Jan. Def stated a few times that Some B12, (only small percentage though) is absorbed through the membranes in the mouth. A large proportion isnt apparently and just gets swallowed and so is ineffectual. That's why my doc says use 2 squirts twice daily. Well over the recommended dose on the bottle to keep some being absorbed.

😊

Thyb profile image
Thyb

From my perspective...if it sounds right that's as good as it can get. Time will tell. I am fine on B12 sublingual drops :-)

wedgewood profile image
wedgewood

I have diagnosed Pernicious Anaemia and neither sublingual / nasal sprays or patches did any good at all . And many members here have the same experience . The B12 molecule is very large .

That is preposterous to suggest that you cannot self -inject because of risk of infection . Using single-use B12 ampoules is a hygienic way of injection . How about all the diabetic patients who self-inject insulin on a daily basis , with the encouragement of the doctors ? No end of us here self-inject safely . Do you know if your B12 deficiency is caused by Pernicious Anaemia.? I think you might suspect it, because you have come to the PAS forum . Best wishes .

smilingjane profile image
smilingjane in reply towedgewood

Hi Wedgwood

Thanks for your message 😊

Doc didnt say that I couldn't SI. But was giving his advice. I didnt mention the diabetic people that SI. I suspect, no, I know that he will have his reasons. Maybe hes had a patient or two with issues relating to S injecting, who knows .

I am wondering also about the needles I have been using arnt like the wee ones diabetics use. I really dont know 🤔

What I do know is that he is clued up and will have done his research. And he is very aware of the importance of B12 .

Everything changes and it's hard to keep up to date which is why I love this site.

I will see how I feel. I am probs going to carry on SI but maybe weekly as opposed to my daily use so far!

I did ask the Q as to if sublingual is as effective and he says yes but you need 4 squirts 2 in the am and 2 PM so I will carry on with that in the other 6 days of the week and see how I go.

Thank you for all of your links and advice do far. I am ever learning 😊😊

smilingjane profile image
smilingjane in reply tosmilingjane

Dont know if have PA but doc says no. So he must have spotted imsomething looking back through my bloods (last 6 years)

My issue he thinks is lack of absorbsion because I had an operation years ago that cut through my ilium.

I have Hypothyroidism though so who really knows ...

🙂

Frenchiebabe profile image
Frenchiebabe

Very true peeing out what’s not required

Bellabab profile image
Bellabab

It is extremely rare to become infected due to injections. It would need you to extremely careless indeed. If correct technique is used then the chances are zero.

smilingjane profile image
smilingjane in reply toBellabab

That's what I thought 😊

I will carry on sI but change from daily to weekly and just be carefull!

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