An apology, and a question about sublingual?

[patez]

I would 1st like to apologise for a rant I made a little while ago concerning taking lots of different supplements (potassium, D3, et al). I was confused and all I really wanted was to feel better, rather than chasing my tail wondering what I should be taking?

I have now been able to get Jarrow 1000 mcg sublingual, and I am now taking 5 a day? Some symptoms have subsided a little bit, I think, but it is very up and down. Some days I seem to feel a bit better, then next day downhill and rock bottom again.

For those of you who do not know me, my symptoms are fatigue, anxiety (feeling nervous all the time), difficulty in walking straight and standing still without feeling like I will fall over (balance problems), bad memory, numb and tingling right hand, chest pains. Apart from that, I feel fine, LOL!

My question is this though? I have read quite a few articles on absorption of sublingual, and they have stated that B12 cannot be absorbed through the membrane under the tongue because the B12 molecules are too big? Can anyone clarify, or refute or verify that fact? It would be a bit pointless holding the lozenge under the tongue for 15 minutes if it does nothing? Just chew it and swallow it instead? As we all know, only 1% would then be absorbed in the stomach, so I guess it would take an awful long time to feel any benefits?

I tried to find B12 injectable on line, with the intention of self injecting (which I hate the thought of stabbing a needle into myself and maybe hitting a vein anyway?) but could not find anywhere that sells hydroxy, and it would be very unlikely if I could have them shipped here as ampoules anyway, as it would be seen to be a medicine by customs here! I did find one place (Oxford Biosciences?) that sells 40,000 mcg methyl (in pure form to which you add saline to produce an injectable solution?). Anybody know about this place/supplier and method?

Thanks for any info.

Tez

[LtAngua52]

Hi Tez, I started taking jarrows b12 sublingual lozenges 5000mcg in March and tge difference was striking. I knew then that my b12 of 245 was definitely the cause of my symptoms. I did let them dissolve under my tongue but the effect didn't last long and I was taking up to 10x5000mcg daily! The 1000mcg ones won't do as much good if you have just started supplementing, but it depends on your b12 level too. I started to self inject in May, buying hydroxocobalamin ampoules from Germany, versandapo is the site. I am in the UK and got them ok. Needles and syringes from Amazon. Eventually my GP had to prescribe them as my haematologist instructed him too. They don't know I have been self injecting. I get them from my GP every 8 weeks. At first I still had to take the lozenges again as the injections didn't last 8 weeks, but now I self inject weekly and can take a lozenge as and when.

There are better informed members on this community than me, but I hope this helps. I hope you are taking folate as well if low as it is needed for effective b12 absorption. You say that the lozenges have helped a little, so you must be absorbing them. It is a life ling treatment so maybe you need to consider self injecting. If I can do it anyone can! Good luck.

[patez in reply to LtAngua52]

Thanks for the reply and support.

I am taking 2 x 400 mcg folic acid also, after meals.

Folate and folic acid seem to be a bone of contention, but I cannot get folate anyway, where I am in the world. I can't even get B12 here! I did actually find some tablets here that had 1000 mcg cyanocobalamin, but they also had 200 mg of B1 and 50 mg B6 in them. I would have ended up overdosing on B1 and B6, which would not have been a good idea!

I cannot get my B12 level checked here, and it would probably now be a false reading anyway, even if I could?

Hmm! Looks like I will be eating an awful lot of the 1000 mcg Jarrow?

You are right in that I seem to be absorbing some B12, because the symptoms I suffer with seem to come and go since taking the lozenges, even in what appears to be very small doses?

Today? I am on a big downhill! All my symptoms are just as bad, and I seem to feel very tired also, with a very dry mouth and split lip to top it all!

I guess it is a case of getting worse before getting better eh?

Thanks for the link to versandapo. I had noticed that B12 ampoules do seem to be mainly available only from vets, to treat mainly cattle! Not sure if I would want to inject that? LOL! But you seem to do ok, so I will take that on board.

Whether I could actually get them shipped here would probably be a problem though!

There may be a light at the end of the tunnel though? I have just talked to my local manager, and he has told me that B12 injections are available here, but it takes a lot of "forcing" the doc to give them! I will go and see the doc again tomorrow. Fingers crossed!

Thanks.

Tez.

[LtAngua52 in reply to patez]

I take methyl folate which I buy from amazon. Some people find methylcobalamin works best and some hydroxocobalamin. For me hydroxocobalamin works best as it last longer. Buying it from Germany is definitely cheaper than taking 10 lozenges a day for me.

What country are you in? I buy the lozenges from Amazon too, as well as all my other supplements. Some people do report feeling worse first, even the tingling and pins and needles can do, as the nerves are healing the sensation of pain can return temporarily. Usually treatment is for life and you do have to maintain your 'dose,' however you deliver your b12 to your system. I prefer the ampoules as I don't want the hassle of mixing substances. I've found the process of buying b12, very easy and will only need to do it once a year.

I hope you have luck tomoorow 'forcing' your doctor to prescribe b12. I had to fight for mine too! Seems to be the norm.

[patez in reply to LtAngua52]

Hi.

Thanks for your reply and support. I need all the info and help that I can get.

I work and live in Oman, but I am British.

From the replies I have received, and probably not able to get the injections that I very obviously need, all the replies are very useful info.

10 lozenges a day? Yeah, I think I have to go down that route.

Chomp chomp! LOL!

Costly though!

But they do not taste bad!

I currently have 300, and another 300 on the way.

And there was I worrying about taking 5 a day!

Surprised that nobody has actually replied to my question about absorption from sublingual?

I guess that the replies answers my question though?

Sublingual is a myth! It is not absorbed direct into the blood stream through the tongue?

It is swallowed in the saliva?

Same as taking a tablet eh?

Only 1% absorbed!

Thank you all for sharing your experiences with me.

My way forward?

The expensive route, and inconvenience of chomping away on 50 Jarrow lozenges a day!

My next order will be for the 5000 mcg though.

Unless I can convince my local doc otherwise!

Thanks to everyone for the support.

Tez

[Lulu_65]

Hi

I have used the methyl from Oxford biosciences. Had to order th saline from Germany. Very easy to mix and lasts for the duration of the shelf life. Just have to keep it covered with tin foil.

I liked the methyl for its quick acting results. However have recently started using hydroxocobalamin which has a longer lasting effect.

Lu

[patez in reply to Lulu_65]

Hi.

Thanks for confirming that Oxford biosciences are genuine.

The website was not clear about how to mix the 40,000 mcg, except to say that it needed 10 ml of saline.

Can I ask how you do that?

Do you mix it all in 1 go, and then store it? If so, what did you use to store it in and how do you extract it into a syringe?

Step by step guide would be helpful, because this may be my only lifeline!

Getting proper treatment where I am, is probably going to be impossible, and getting hydroxy ampoules is probably also going to be impossible because of the strict medication import rules.

What I do know is that I have all the symptoms of PA, and only taking lozenges is not going to treat me properly.

Ha! Why am I scared of sticking a needle in, when I am so bad that I used to self harm by stabbing myself with a kitchen knife!

Yes! I was that bad!

I am being treated for my depression now though, and I have just recently got that under control, with a change of medication, to Clonazepam, which I believe does cause B12 deficiency though, which may be why I have gone downhill rapidly recently?

I despair! The local doc is useless. B12 injections are available here, from what I have been told, but they are very reluctant to give them!

I probably cannot import any sort of ampoules.

So the Oxford bioscience option is an option for self injection.

As you have used it, please share the details with me.

Thanks.

Tez.

[Lulu_65 in reply to patez]

Hi patez

The methyl comes in a little bottle which is just the right size to add 10 ml of saline.

The saline comes in squashy plastic ampoules. You just twist the lid off to open then squeeze the saline into the methyl bottle (which has a screw top lid).

Screw lid back on methyl bottle and cover with tin foil.

Leave to stand for 20 mins (do not shake)

I have 2 ml syringes with green needles for drawing up and the yellow thin needles for subcutaneous injection (you could also use insulin syringes which come with needle attached... If you use those then you have to be careful drawing yo not to scrape the needle on side of bottle)

The methyl, once mixed with the saline, provides 1mg of methyl to 0.5mls. So this is a tiny injection ... Subcutaneous injected into tummy. Completely painless and easy to do. The mixed ampoules provides 20 1mg injections and can be kept for the whole shelf life of the date on the bottle.

There are videos on YouTube to demonstrate how to give yourself a subcutaneous injection.

The methyl once mixed I kept wrapped in tin foil and in a sandwich container , in a cool dark place (fridge not necessary unless you are in a hot climate)

Hope I haven't missed anything out. It goes without saying that you have to be as sterile as possible throughout the whole process

Lu

[patez in reply to Lulu_65]

Hi Lu.

Thank you so much for your guidance.

Yes I have watched the you tube videos. Seems to me that the preferred method is IM through the thigh? Worried me about the possibility of hitting a vein though?

So? The methyl is only a half dose? Ah! just read your post again! So it only needs a 0.5 ml dose.

How many injections does that amount to from the 40,000 mcg though?

My mind is fuzzy! PA does that. I can't compute it! LOL!

From what I have seen/read I would need blue needles.

Insulin needles are not available here, and not importable either! Weird, but true.

Thank you so much for your very concise guidance.

Tez

[LtAngua52 in reply to patez]

I believe another UK company sells the ampoules too, called intravita but I found it expensive.

[patez]

I seem to have replied to 2 of you and got confused with my replies Forgive me.

My mind is in a mess!

Tez.

[Gambit62 Administrator]

There has been very little research into methods of delivery for B12 deficiency. Everything that I can find in relation to oral v sublingual implies that there is very little in it

ncbi.nlm.nih.gov/pubmed/146...

this study compared sublingal, oral and oral B complex in 30 patients (3 groups of 10) and looked at effects on blood serum levels. sublingual came out slightly better than oral but oral B Complex came out on top - though, as per conclusion - not really enough to say that one method was really any better than another.

[patez]

Hi All.

I went to see the local doc today. It was a different doc to the one who originally diagnosed me with B12 deficiency. He asked my symptoms, and I listed them all. His response was not what I had expected. His 1st comment was that it was very unlikely that I had PA or B12 deficiency, because I was British? He said that Europeans very rarely suffer from B12 deficiency? Hmm! He has suggested that I have neurological problems and damaged nerves in my right wrist? He has ordered B12 shots though, at my insistence, and I am hoping to start loaded doses from tomorrow, if they have stock in the main hospital! He has also ordered full blood tests for blood count and shape, including testing for B12 deficiency. I did tell him that the B12 tests results would probably not be conclusive, because I have been taking 5,000 mcg B12 sublingual every day for 2 weeks, and 1,000 mcg tablets for 2 weeks prior to that. Would my levels have gone through the roof in that time, taking supplements only? Not sure when I will get the results back. He wanted me to go and see a psychiatrist and neurologist, and get my right hand tested for nerve damage, but I am going away on holiday in 10 days time, and the hospital could not fit me in, so he is arranging those tests and appointments for when I return from holiday. He is totally convinced that I do not have a B12 deficiency.

Tez

[patez]

Hi All.

The B12 injections were not available in the hospital, so I was not going to get the injections from the doc.

I was doing some desperate browsing to see if I could get any info about B12 injections locally, and I came across an excel spreadsheet with a price list for medications in Oman. Lo and behold, B12 injections were listed, so I contacted the local pharmacy and they had them in stock! They are Neurobion INJ, made by Merck KGaA, Germany. Each ampoule has 100 mg B1, 100 mg B6 and 1000 mcg cyanocobalamin B12. Sounds ok? Got some blue Terumo 2.5 syringes with needles. So I am good to go with self IM!

Now comes the scary bit eh?

I have looked at some videos on you tube, and it looks fine to IM in the thigh, but I am a bit scared by the warning of hitting a vein? They state to withdraw the syringe slightly and check for blood being drawn up? Hmm! I would have though that some blood would be present anyway, so what should I actually be looking for? Advice please!

I am hoping to start IM tomorrow and I also wonder when is the best time of day to inject? Early afternoon or late evening are the most suitable times for me.

The ampoules will have to be kept in the fridge, and I guess that a cold injection would not be good, so how long after taking it out of the fridge would be a reasonable time?

When injecting, how deep do I inject? All the length of the needle?

Sorry for all the questions, but I hope you can imagine that I am scared to death about self injecting!

Tez