No life

[Libbylou04]

My gp stopped my b12 injections a yr ago because readings where high this is after being on them for 11yrs ,since then my life is sleeping 18-20hr most days no energy I'm always cold especially my fingers he did repeat blood test but was still high but this can happen whilst on them and this is new gp due to moving he also stopped my vitamin D can anyone advise me what I should thank

[Nackapan]

You can but vit d3

Write to your Gp.

Or get a telephone consult.

A difficult time to get the reenstated

[AndreiSys]

There is one interesting phenomenon that is unknown to doctors: Lack of b12 + lack of iron together gives a false indicator of a Normal level of B12. Try searching online.

[fbirder in reply to AndreiSys]

No, that's not right. Levels of iron cannot affect the result of a B12 blood test.

What can happen is that a deficiency of both can result in a normal value of the Mean Cell Volume (MCV) to make it look as if macrocytic anaemia is not present. That's because low B12 causes large red cells and low iron causes small red cells. The two combined can cause the average cell size to be normal.

[wedgewood]

I found it more than difficult to argue with the doctors . It is especially so if you are feeling unwell and exhausted . You will always have high readings of B12 when on injections. It’s as though you have to fill a deep bucket with it , and only when it overflows do you get the benefit from the overflow, and it needs topping up.We are all different in how often we need” topping up “. .I know P.A. patients who are fine on 3 monthly , , I need weekly , and some need daily . But whilst you are arguing your case , and getting dismissed as a hypochondriac, you are getting more unwell . I just decided to self-inject . It’s not expensive . Also even if you don’t need it , you cannot overdose , and you do yourself no harm ( which is more than you can say for many pharmaceutical drugs . ) Take a modest B9 tablet as well , Folic acid in a tablet -folate in green leafy veg , peas. etc . It works together with B12

.

As for vitamin D - you can buy them quite cheaply . But always take a vitamin D tablet that contains Vitamin K as well. Very important. Best wishes

[Libbylou04 in reply to wedgewood]

Yes I thought about getting them myself but not sure where or exactly what to look for can you tell how to go about it as I carnt carry on like this thanks for your support

[wedgewood in reply to Libbylou04]

I’m afraid I don’t agree with AndreiSys . I have tried a Methylcobalamin, and found it to be no better than Hydroxocobalamin . Indeed it doesn’t agree with some people . Also it is much more volatile, has to be refrigerated , and is much more expensive Also difficult to obtain . Hydroxocobalamin is the B12 of choice of the NHS .

Buying everything in bulk , ampoules, needles , syringes and swabs ( also a sharps bin for disposal ) an injection will cost about £1.30 .

——————————————————————————————————————

. Help for Pernicious Anaemia/B12 deficient patients and others wanting to self-inject .

ALWAYS MAINTAIN ABSOLUTE HYGIENE WHEN SELF-INJECTING .

B12 ( Hydroxocobalamin ) single use ampoules can be obtained from some German online pharmacies . B12 ampoules are an over the counter item in German pharmacies. These pharmacies are strictly controlled by the German Ministry of Health , so no cause for concern. No prescription need in Germany . ( how enlightened! ) . Many members of our forum obtain their B12 ampoules from these pharmacies , and they are very reliable .

bodfeld-apotheke.de ( site in German , but can be obtained in English from a drop-down list at the top right-hand corner of the

site) About €9.00 courier no matter how many you order .

versandapo.de ( site in German only , so you might need a translation app , or use Google Chrome .) Also about €9.00 courier no matter how many packs

mycare.de is obtainable in English . The courier charges are higher with this pharmacy . ( This pharmacy is only shipping to German postal addresses during the pandemic)

apomex.net

counterapo.de click on Union Jack at bottom of site to get English .€12.00 shipping.

You can pay using PayPal , amazon pay or cards .

It’s a really good idea to register with the pharmacies . It’s so much easier then when you reorder .

amazon.de ( German Amazon ) -available in English. The disadvantage here is that the several pharmacies who supply B12 ampoules through amazon.de , do not all ship to U.K. You need to trawl through until you find one that does .

Search for Rotexmedica B12 depot . Don’t forget “depot” , because you could accidentally order Cynocobalamin, which Rotexmedica also manufacture .Cynocobalamin would also work . but the NHS uses Hydroxocobalamin. Cyno is cheaper . The ampoules are 1mg x 1ml

Hevert , another company produces 1mg x 2ml ampoules .

Pascoe manufactures 1.5mg x 1 ml ampoules .m

The ampoules do not need to be refridgerated, but should be kept under 25 celsius. If temperature gets higher , put them temporarily in the top of the fridge.

Every German pharmaceutical item has a reference number printed on the packet . It is called a PZN. You can search for your required item by using this number . It takes you straight to the item . For 1 packet of 10 ampoules , or multiples thereof , you can use the number 03862297 . For a pack of 100 ( 10 x 10) use the number

03862305 . These numbers are for Rotexmedica Hydroxocobalamin ampoules only . You cannot use these numbers when ordering from amazon.de.

Needles , syringes , swabs and sharps disposal boxes are obtainable from medisave.co.uk

I buy long withdrawal needles 21G x 1 1/2 inches . The withdrawing process makes the needle blunt when it touches the bottom of the ampoule ( ouch!)

I use a 25G x1inch needle for injecting .

Open the ampoule using a swab wrapped around it , to avoid nasty cuts . The weakest spot on the ampoule is marked with a spot on the neck .If you have a problem with this procedure, a device called an ampoule opener , about £4.00 is obtainable from amazon.co.uk

exchangesupplies.org also supply needles and syringes .

The information on supplies applies to UK .There are different sources for U.S.A. mycare.de. used to supply to USA , but I don’t know if they still do . They are only delivering to Germany during the pandemic anyhow .

——————————————————————————————

SUPPLIES FOR USA .

An Australian company, vitaminb12online.com will ship Cynocobalamin , Hydroxocobalamin and Methylcobalamin kits ( I.M. & Sub-cut ) and single use ampoules, to anywhere on the globe .

vitaminquick.com in Florida supply Methylcobalamin ampoules , but are closed at the moment ( April 2020)

buy-otc.com in Canada , supply Cynocobalamin ( Sandoz , in 10 ml vials , but not in single use ampoules .) They also sell needles and syringes if you have bought injectables from them

biosenseclinic.com in Canada ,. supplies Cynocobalamin vials .

allegromedica..com supply needles and syringes .

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To inject Intra muscularly (I.M.)

I use a 2ml syringe , although the ampoule is 1ml. This ensures that I can get every last drop of precious B12 into the syringe . Flick the ampoule to ensure that the B12 is in the bottom , and break it open at the neck, where the weak place is marked with a spot . . I then pull out the plunger on the syringe , and inject the air SLOWLY into the ampoule . Then , when the plunger retracted , every last drop of B12 is in the syringe . Now the injection needle is put on the syringe and all the air in the syringe is expelled by pressing the plunger , until a tiny bead of B12 appears on the tip of the needle 💉. Now you are ready to inject into the middle outside third of your thigh , where the muscle is nearest the surface ( Vastus Lateralis ) . Inject at an angle of 90 degrees .

If you are needle phobic , there is help in the shape of a device called an Auto-injector costing about £100.00 at the moment ( 2020) This is available at a Danish company - unionmedico.com

I don’t use one , but I’ve heard good reports .

If you do want to order one , be aware that the device takes a specific size of syringe etc. So wait and find out before you order any from medisave etc

Also if you are needle sensitive , a numbing cream can be used ( Amazon)

I swap thighs each time I inject .

The above method is I.M. ( Intra -muscular ) and you can find videos about it on Utube . Some OK , some awful.

You can also inject sub-cutaneously ( sub-cut) A shorter needle is used . I know nothing about it , except that it is an accepted way of injecting B12 .

If you are having a B12 injection for the first time , you should have someone nearby , in case of anaphylactic shock . This is a very rare reaction , but I feel obliged to tell you .

Do not worry about overdosing on Vitamin B12 -you cannot . It’s a proven fact.

I have been self -injecting for 4years now , but I do remember how very nervous I was the first time . I was shaking like a leaf . I don’t turn a hair now . It has changed my life . Don’t be impatient . Also some people feel worse before they start to feel better .

Remember to include vitamin B9 in your daily diet ( also know as folate in food -green leafy vegetables, peas etc. ) In tablet form it’s known as folic acid . A modest 400 mcg tablet daily would be good . It cannot be stored in the body for long . B9 works synergistically with B12

If you have Pernicious Anaemia, it’s a good idea to take a multivitamin and mineral tablet , as you will have low or no stomach acid . Hypochlorhydria/Achlorhydria, because the P.A. .antibodies interfere with stomach acid production as well as Intrinsic Factor . So absorption of vitamins and minerals can be inhibited .

P.A.patients might also benefit from probiotic -rich foods like organic raw sauerkraut, kimchi , kefir, real yoghurt and kombucha drinks as lack of stomach acid can upset stomach flora and lead to gut problems , which probiotics can help with... Failing that a probiotic preparation — capsules etc.

Chewing really thoroughly and taking smaller meals more often can be beneficial for someone with low stomach acid . The enzymes in saliva can get to work on starting to break down the food .

Pernicious Anaemia patients should also be aware that it is an auto-immune condition, and as such , rarely comes alone .The most common “ companion” is a thyroid condition . But there are many more.

Very best wishes .

[Hidden in reply to wedgewood]

I so agree with everything you say here..my endocrinologist when first diagnosed told me you cannot overdose on B12 injections...my levels were high but he was not worried about it as it’s not harmful..surely if you feel well that is the main thing..my gp sent me a txt to say no more B12 injections for six months..it was a very stressful thing to happen but I have found a nurse that will give me the B12 for the time being (with pay) it’s worth it..& if gp won’t do it..I will get the nurse to show my husband to do it for me..not sure I could handle doing this myself..

[Libbylou04 in reply to Hidden]

Yes its horrible I'm so tired all the time I'd been on the injections 12yrs I'm not happy with the way I've been treated 1 of the replies told how I can order from Germany and I have hope you get on alright

[Traceyma in reply to Libbylou04]

I have followed the very good advice on here and bought my own supplies from the companies listed. Very easy to order and quick delivery. I will be self injecting sometime this week but quite nervous. My gp has also withdrawn my b12 jab permanently after getting them for 13 years!

[kittyflowers in reply to wedgewood]

My thoughts exactly and well put wedgwood.

Self injecting is also very easy to do.

You have to take control Libbylou14 as this situation risks your health deteriorating further.

Vit b12 deficiency and its symptoms and treatment is very badly understood by GPs sadly. Best Wishes

[AndreiSys]

Agree with you! Just do not forget that the real B12 is only metilcobalamin! (adesin also is more or less good)

[Nackapan in reply to AndreiSys]

Sorry I do not understand your post

The only real b12 is metilcobalamin?

Surely b12 is b12 in whatever form ?

[AndreiSys in reply to Nackapan]

There are 4 forms of B12!!! Metilcobalamin is the best because it goes straight to your blood and immediately start to act! Very effective and useful! I’m not brilliant in English. Sorry. Please, try internet! However I will try to reply if you will still have questions

[Nackapan in reply to AndreiSys]

Okay I will look it up. Thanks

[HappyHealthyGirl in reply to AndreiSys]

Do you perhaps mean Methylcobalamin?

{Asking as I guess pronunciation is similar}

[HappyHealthyGirl in reply to HappyHealthyGirl]

I checked myself & it seems that MethylCobalamin is MetilCobalamin in Italy!

[Brainfoglady]

Libbylou04 - your GP is ignorant. Your description of the way you are is exactly the way I was. Injections of 1mg of hydroxocolabamin have returned my brain function, rid me of that horrible “semi conscious” state and stopped the neurological symptoms of burning feet, balance problems etc., The advice and info on the pernicious anaemia forum of this site was invaluable to me - Helped me write a letter to my Dr listing all my symptoms, quoting Nice Guidelines on treatment. You can buy 1mg/1ml ampules of hydroxocolabamin from Germany to self inject. B12 deficiency is serious and testing your blood whilst on injections is pointless. Write a letter to this Dr- List all you symptoms in writing, the fact that B12 is cheap, non toxic and it will be much more cost effective to treat you than to let you get b12 deficiency induced nerve damage and dementia. I took 6 hours to compose my letter as my brain would not properly. I put that fact at the end of the letter.

Good luck Libbylou04.

[kosmickaz]

My guess is that you need to get your gp to do an active b12 test - or get one done privately (through somewhere like medichecks)It’s possibly down to genetic issues and problems with methylation. My levels were always high and I have a functional b12 deficiency (discovered on genetic tests). I buy my own b12 injections and self administer although my gp does prescribe b12 it’s 1 every 3 months and I need them at least weekly.