b12 injection intervals

[Kat_88]

hi everyone! I have b12 deficiency ( 168 at the time of diagnosis) and since i took folic acid for months without checking b12 level I started experiencing neurological symptoms besides fatigue, skin pale. Since my Gp refused to prescribe me injection and gave me only oral supplement wich was a slow progress, i decided SI, as I read the posts i am following an injection every other day ( so far 7 doses of 1000 microgrammes) and I see progress, less pain, less fatigue, less needling and tingling regardless of flare ups that show up when I have a busy day or drink!!! My question is what would be the ideal injection interval for me? Should i follow a rule or go by symptoms? I wonder what should i do after these two weeks? I also take 1000 oral sublingual supplement to fasten the process because i have been misdiagnosed for months and really need to feel me again soon. Thanks

[wedgewood]

As you can’t overdose on B12 , I would carry on EOD injecting until your symptoms disappear - Afterwards try weekly injections , and if all is well , try longer and longer , until you notice symptoms returning , and then go back one stage of regularity . You will then have found the regularity you need . We all differ in the regularity of injections we require , but that is not acknowledged by the medical profession, unfortunately.

[Kat_88 in reply to wedgewood]

Thanks for your reply. Do you mean after a period symptoms would return? what is the reason? and then if I feel the symptoms are coming back, I have to go back to EOD or at least more shots in a week until I find my regularity? I agree no one could understand how we feel literally.

[wedgewood in reply to Kat_88]

if you don’t inject often enough , symptoms will return . Pernicious Anaemia is incurable . You will find how often you need to inject by trial and error .

[Kat_88 in reply to wedgewood]

Thanks. Well i am for sure Thalassemia minor but do not know anout pernicious anemia, i think i should check it! Is it a specific blood test?

[Technoid in reply to Kat_88]

The useful tests for PA are described here : pernicious-anaemia-society....

[Kat_88 in reply to Technoid]

thank you

[Peder1962]

You should also beaware that there is big differences in effect of the four available b12 ampull types. The best and longest effect are in hydrocobalaminacetat - like Pascoe 1500.

Ass professor dr Jörn Schneede Umeå Hospital (known international B12 expert) has a recommendation for PA patients, that they need minimum every 4 week with hydrocobalaminacetat - in maintenance mode.

Pfizers recommendation for Behepan (hydrocobalaminacetat - not longer manufactured) was every day or every other day until symptoms are gone.

It can take years (like 4 years) until symptoms are gone. First signs of improvement often occur in three weeks, and after 6 month most symptoms often are healed. But its individual - you will have to learn how your body reacts.

Writing a symptom diary is very good! It's a long recovery - easy to forget - written notes are a good backtrack.

[Kat_88 in reply to Peder1962]

thanks for your insightful reply! Unfortunately the only B12 injection type in Italy is cyanocobalamin and i have to go for it!

[Peder1962 in reply to Kat_88]

Italy is a member of EU, and then you are allowed to buy/shop from every country within EU. In Germany b12 ampulles are free to buy, prescription from doctor not needed. I recommend the www apo com site. Use Chrome for accesing the page - and install the automatic translator if you dont talk german. Hydroxocobalaminacetat (like Pascoe 1500) has better/longer effect, and you should avoid drugs with cyanid - especially if you are smoking.

[Kat_88 in reply to Peder1962]

thanks i try that, not a smoker though

[Sleepybunny]

Hi,

I can see you're in Italy.

Just wondered if if you can get injectable B12 over the counter in Italy.

Some useful B12 links

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Info.com website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

b12-institute.nl/en/home-2/

Two useful B12 books

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

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

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

Very comprehensive with lots of case studies.

I think this one has been translated into Italian.

[Kat_88 in reply to Sleepybunny]

thanks. The only over the counter B12 ampules in Italy is cyanocobalamin! I think maybe there are other types mixing with other B vitamins but not B12 only!

[B12life]

are you by chance vegetarian? B12 comes from meat, so if you are vegetarian then eventually you will be able to stop injections and stay with oral. However if you eat meat this means you don't metabolize b12 and will probably need I jections for life. As they say everyone is different. I was 190, had all those symptoms and bed ridden because of the fatigue. I still inject eod after 2.5 years and find if I space out I jections the symptoms return. The problem is, unlike insulin, there is not an immediate response, esp the longer down the path of recovery. Now it can take a couple of weeks f before my symptoms come back after quiting.

Go by symptoms!

it took about 1.5 years to get to where i started feeling somewhat normal. Then I started gradually ramping up the exercise and keep doing injections so I can exercise as exercise can deplete the b12. I feel so much better. No back pain, tight muscles, neuropathy, heart palpitations. All gone. Still have some brain fog that very gradually improves.

Sleepy bunny has great links. Read those when you get a chance. But alll in all, I just need injections. Some here have been able to space them out after time.

[Kat_88 in reply to B12life]

thanks for the advise and I am happy that you feel well and without debilitating symptomes specifically back pain:/ which sometimes feels like I am 75 at my 35!!! Well i am not vegetarian and i eat reasonable amount of meat. Last year when i tested it was too low (118) but without neurological symptoms, i got oral supplements and when it reached 220 (right after finishing my vitamins) my GP said it is ok and its time to stop!!! So i stopped getting any type of B12 and right after that Hematologist prescribed me 5mg folic acid 7 days a month for rest of my life as i am Thalassemia minor, i started it without checking my b12, suddenly after 6 months i started having weired feelings and symptomes so my GP had me tested for fibromyalgia , XRays, Physiotherapy sessions all without success! After 3/4months i asked for blood test and the results came back b12 168 and folate above the range! I suspected and did some research and i found out these unbalance is not good and even i asked for injection GP regused so i started SI. Now i feel better and i see it is not a fast process! And I lose hope sometimes. I wanna go for a root cause of this malabsorption since i am not a vegeterian,

[Sleepybunny]

"wanna go for a root cause of this malabsorption"

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...