Hi all,Here again with docs wanting to minimize my b12 jabs.For those that don't know, I was diagnosed with PA over 6 years ago. My b12 was bottomed out, MMTHFR test showed a gene mutation and my instrinic factor was beyond high. My symptoms were horrible. I was going thru so many surgeries to save my right leg. I lost it after a fight due to bone tumors. I was down to 80 pounds, could barely function, couldn't think of simple words and tingling of all over. It was horrible. My ortho oncologist was the one that found b12 was low.
After loading doses, my primary wanted to go to one jab a month. My ortho said no way and that I needed 3 a week for life.
So..I've been doing 3 a week for over 6 years. New pa refilled my script last week with only 1 vial per month. I explained that I've been doing so well on the regiment. I also explained that I still have more weight to gain(i'm 109 pounds) and still have nuero symptoms. They said and I quote " you need new blood test" I explained that way after treatment has started, it's useless to do a blood test and it would be skewed. That fell on deaf ears. I then said ok, fine. If you want to minimize my jabs, could we at least do it gradually? Ummmm nope!!!
I did some research and b12 withdrawal is a thing. I'm just so mad. What should I do. I'm honestly so tired of fighting for everything. Especially a simple vitamin.
Any advice would be appreciated. Sending love and hugs to all of you. Especially ones that are suffering and fighting for their jabs💗
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Wowo23
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Might be some useful info to pass to your doctors below.
1) Pernicious Anaemia Society has a page for health professionals. Health professionals from across world can join PAS as healthcare affiliate members, no charge for them to join.
If you search online for "B12 deficiency Wolffenbuttel" you should find several articles he wrote, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).
I'm in UK and I know that some UK forum members cannot get enough B12 from NHS so they turn to self treatment. Some get extra B12 injections privately, some try high dose oral b12 but this doesn't work for some people and some as a last resort try self injection (SI).
There are other forum members from US here, might be worth searching for their posts.
Your Ortho specialist is the one to follow. Performing blood tests whilst on injections is pointless. It would be like testing seawater to see if it's salty.
The MMTHFR mutation probably isn't significant in this case as there's loads of mutations out there.
If you had a high Intrinsic Factor antibody result then that clinches it. You need B12 injections, although some folks can get by with massive amounts of oral B12 instead, but that's another story. Further testing is utterly pointless and misleading.
But why on Earth would any medical professional wish to replace a 6yr treatment for diagnosed PA with tablets that may or may not work, whatever the quantity ?
If tablets were so effective, why are so many of us self-injecting ? It's not a first-choice option most would consider, is it ?
I remember way back, trying to get well enough to keep my job, I started to self inject. My GP told me to ask the nurses for help - they backed away in horror.
I'd never even ordered anything online before.
So with no help, no training, no computer access except at the nearby public library, I watched videos and got some friendly advice from here.
I was terrified and useless at injecting. Relax ? Are you joking ?
Eight years later, I'm getting rather good at it.
Still no sign of the euphoria that a consultant assured me self-injection gives you, though !
You have test results with figures showing your "bottomed out" B12 and your "beyond high" intrinsic factor. These results are what got you your PA diagnosis.
The MMTHFR is I believe a fairly common mutation and so I would not use this as part of your argument - you don't need it.
There is no cure for PA, there is just management and symptom control. There needs to be patient input into whether you are getting optimum treatment to ensure that continues to happen, and regular monitoring of folate, ferritin, vitamin D, thyroid to ensure nothing else is going awry.
In the UK, the usual treatment is to have 6 loading injections initially, then maintenance injections every 2-3 months. This really isn't sufficient treatment for many; that much is clear from posts here over many years. Maintenance injections should be frequent enough to do their one task: maintaining the improvements gained by the loading injections. If the loading injections do not give any symptom improvements, there is no point that I can see to starting the maintenance regime at all.
Neurological symptoms need EOD injections to get required improvements and nerves can take time to heal. I was given 2 injections a week for 6 months - and later started self injecting every other day, as I felt more was possible. I now have reduced this back to 2 injections a week, and have used this frequency now for about six years.
Those who study DNA (Adult Inherited Metabolic Diseases consultants) have told me that a particular genetic problem, if discovered, can mean the patient needs 2 injections a week for life - and that sadly, some of their patients return in a deteriorated state all because their GP had decided to ignore their expert advice.
Get back in touch with your "ortho" for a letter, repeating clearly what your lifelong treatment must be.
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Antibody test was normal...
I am fuming!!
Grrrr doctors! 
