Dr Rietsema: B12, A Work in Progress

[@user-lq3dj3eo8k]

you guys are saving my life. I'm 65 and started having problems at age 18. It's hard to think that after so many years and bad health issues. a loss of what could have been a happy productive life could have been solved with b12. thank God for internet and great organizations sharing information.

[@AndrewBandele]

Did u not lose your mobility and balance my friend is suffering with this illness my friend can not walk properly plus numbness pins and needles in back amongst others stuff my friend is going thru did this b12 deficiency /p.a effect your balance and walking mobility thanks

[@ge3912]

Dr Rietsema: You’re doing a great job! It’s so good to see some action being taken to educate Drs in B12 Deficiency - your sort of GP Talks need to be rolled out across the country ASAP!! But there is one very worrying aspect which I feel needs a great deal more careful evaluation and addition research. That is the idea that high dose oral supplementation works as well as B12 by injection. I understand the argument that there is 1% passive absorption from high dose oral tablets and that some studies have shown such treatment to be ‘successful' - but in those studies what is being used as the measure of ‘success’? Is it ‘success' in raising blood plasma levels, or is it ‘success' in resolution of clinical symptoms? It is the latter that we patients care about - we don’t care about raising lab values, we want a resolution of our symptoms and to simply feel well. The B12 Institute argues the case (with reference to supporting research) that the studies that suggest oral b12 is effective focus only on the haematological aspect of the deficiency and on raising serum b12 levels. b12-institute.nl/caution-note-about-oral-supps Also please see 'Main results’ and ‘Conclusions' from this study: “Oral vitamin B12 compared with intramuscular vitamin B12 for vitamin B12 deficiency” (H Wang et al) www.cochrane.org/CD004655/ENDOC_oral-vitamin-b12-compared-intramuscular-vitamin-b12-vitamin-b12-deficiency?fbclid=IwAR3dSq-mbWWwzB18gtY40PAET229FLyxOE5u3jW0TYTz6cj_80v6xa0j3dI I urge you not to encourage GPs to switch to oral supplementation unless this issue has been cleared up - for a number of reasons: • I believe that B12 is already seen by many GPs as a soft target for spending cuts, apparently supported by recent guidelines that encourage stopping the prescription of certain over-the-counter medicines. So GPs, knowing B12 can be purchased as an over-the-counter oral vitamin, jump on that as a way of avoiding the costs of nurses time administering jabs. • The other major misunderstanding is about using blood test results once therapy has started. Drs are too frequently using a blood test result as proof that the patient is ‘cured’ and no longer needs any treatment (often ignoring clinical symptoms that persist or attributing them to ’something else') - oral tables will raise blood levels, so a patient who’s started on oral B12, but who’s still symptomatic despite this, stands no more chance of getting the B12 jabs that might deal with their symptoms - they are effectively out of the loop.

[@brookespears2266]

And in the U.S. too!

[@user-lq3dj3eo8k]

many people such as myself have lost their intrinsic factor and cannot absorb b12 in the stomach

[@k.c.6464]

I am 43, a few years ago, both equally a problem for me in the US-California-diagnosis and treatment. Finally got a diagnosis, but had trouble getting methylcobalamin shots through a doctor. I have to order from a hormone replacement therapy center in another state. I've had many, many symptoms. Thankfully the shots, weekly, sometimes twice a week have helped tremendously. Before I was able to get shots, I would take 60 (5,000 mcg each) of sublingual methylcobalamin tablets a day-seemed excessive, but was necessary-no help from doctors, I saved my own life!

[@perniciousanaemiasociety]

Many Americans also self-inject either due to doctor reticence or insurance restrictions.

[@k.c.6464]

Thank you for your research and work on this!

[@harrycurrie9664]

I lost 25 years of my life through B12 deficiency/PA and it wasn't until 2017 I found the problem ... now I'm working on my path back.

[@k.c.6464]

@@harrycurrie9664 wow, that is a long time. Glad you found out the problem, good luck and God bless you...

[@harrycurrie9664]

@@k.c.6464 I feel if I hadn't found it I wouldn't be here today. Thanks for your wishes.

[@phoenixrising8062]

I got diagnosed with PA at twenty-one. My GP told me around forty I'd probably have further complications. Low and behold, at forty I got diagnosed with Type 2 Diabetes and Non-alcoholic fatty liver disease, and I'm not even overweight. My GP is constantly checking my heart and bloods. To be honest, I'm grateful they regularly contact me and monitor my conditions.

[@harrycurrie9664]

Are you getting regular B12 blood tests ?

[@phoenixrising8062]

@@harrycurrie9664 Bloods every three months to check everything.

[@harrycurrie9664]

@@phoenixrising8062 Can I ask what your B12 readings are ? Mine when diagnosed ( 2 months after I had begun taking a B12 tablet every morning ) were 8 when it should be >35 and 80 when should be >125.

[@phoenixrising8062]

@@harrycurrie9664 I don't go into depth with them anymore Harry. Regrettably, I couldn't tell you. The nurse practitioner I have worked for my father in the NHS for decades before he retired. So I trust her implicitly. I just take her lead when I'm summoned to see her. If your ingesting tablets and your levels are not shifting then your likely to have actual PA whereby your body is destroying the intrinsic factor in your stomach as an auto immune response. Mine have always been trace amounts, i.e. little to none. That's why I only get injections, as tablets won't work through stomach absorption as I have no intrinsic factor to break down the B12 in food. Tablets are a pointless exercise in futility. Have you ever had a biopsy to check your intrinsic factor and do you get injections? Secondly, without good levels of folate and folic acid you can always be tired. PA deforms your blood platelets so they can't carry oxygen well, without good folic and folate levels in your blood you can't carry the blood platelets well enough for the little oxygen you may have in your blood. There are so many factors. It took my GP's 20 years to nail it down for me. All you can do is research and query your GP. Secondly, its finding someone who specialises too. I'm fortunate my nurse practitioner did specialise in it as it affected a family member. If your concerned your levels aren't rising. Speak to your doctor and express your concerns. If your lethargic and getting brain fog all the time, that's not a good sign as it's poor levels of oxygen. You could end up with neuropathy. Each persons experience of the disease is different.

[@harrycurrie9664]

@@phoenixrising8062 I'm getting my bloods done today so will let you know my levels if you like. Yes I have peripheral neuropathy but not as severely as it was since I started treating myself.

[@nikkster01]

I have managed to get through the last 25 years without the need for a society not sure what is hard about having an injection every 6 months except it hurts!!!!!

[@brookespears2266]

I'm in Atlanta Georgia. Just taking me 15 years to get a diagnosis and medication that makes me me again after so many specialist made me feel like I was crazy because all of their information came back with no problem. My question can't really pertain to you because you guys are in the UK but if something happens to a person suffering from this and they go to jail in the United States their treatment stops because nobody believes anything and the nurses are literally the failures of the nursing community so if that happens to a person and they stop their treatments their treatments are halted What happens to a person going forward? does the condition get worse or does it revert back to where it was before the B12 injections?

[@k.c.6464]

It gets worse...

[@LesleyTurner-t1b]

But surely if GPs diagnose B12 def and patients get treated it will actually say money for the nhs as they won't be doing tests for each symptoms, treatment for each symptoms and time at the GP surgery. B12 injections are very cheap.

[@michelleeaddy-midgette2652]

I fall in the 1>20 age group 😩