I’m a 64-year-old female and I recently discovered my PA by accident. I had major back surgery a year ago and my recovery has been waaayyyy longer than it should’ve been, with extreme exhaustion, dizziness and brain fog, all preventing me from going back to work.
So my GP started me on a battery of tests which resulted in a referral for both a gastroscopy and an endoscopy. Afterward, the attending physician came out and asked me if I’d ever been told I have Pernicious Anemia, which I’d never heard of. I’ve always been told I have low iron but was never told that it was critical. I’d just hear things like eat more cheeseburgers.
So now I’ve had three fortnightly injections, and in the meantime have been feverishly googling symptoms. I’m beginning to see a suspicious pattern over the last couple of years - burning feet (I bought bootie ice packs for my feet a couple years ago), tinnitus (I’ve have it for years but it’s become much worse), muscle weakness (sudden onset with head drop and total body loss of control that sent me to the ER, where a doctor told me it was just stress).
And these were just legacy issues. After the injections started, I’ve become so irritable (like PMS, feeling like punching holes in the wall kind of irritable), and have started having night sweats and blurred vision (not my normal age-related fuzziness, but full blown double vision).
I’m happy that my current GP has caught this, and seems to be pretty proactive, but after reading so many stories of people doing many more injections than fortnightly, I think I might run this by him during our next visit.
I’d be grateful if anyone has any suggestions or experiences they’d like to share in the meantime. I’m afraid to get too hopeful that this might be life changing, but am really hoping it is.
Cheers
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nnigma
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In Australia B12 is OTC so you can buy it yourself and inject as much as you want.
I'm not sure what the guidelines there say but in the UK , neurological symptoms - everything you describe, burning, tinnitus, weakness, mental issues - require every other day (EOD) injections until symptoms resolve or 'stop improving'.
How are folate levels? B12 needs folate to do its job, so if low you can take folic acid or methylfolate, it's a bit of trial & error to find the dose and form you will need.
A daily symptoms log can help you see what's working and what's not.
And finally, it's normal to get worse before getting better. Unfortunately! And healing from B12 can be a bit slow. But you need the right frequency of injections.
I'll post some links when i get on my computer if Sleepybunny doesn't beat me to it.
There are other threads on the forum by Australians so may be worth searching.
May also be worth putting Australia in your title as this may catch their attention.
I'm so pleased that your GP has started treatment. It's quite common for people on this forum to report that their symptoms get worse for a while before starting to improve.
If you've been ill for a long time then it may take longer to start to see improvement.
Some people keep a symptoms diary.
It is vital to get adequate treatment. Inadequate treatment increases the risk of developing permanent neurological damage. In severe cases, the spinal cord may be affected.
I suggest you try to track down any regional or national guidelines on treating B12 deficiency.
I did find a couple of heath documents/articles when I searched for "b12 deficiency guidelines Australia"
A few B12 links that may be of interest.
Some links may have details that could be upsetting.
Welcome to the forum. I’m in Australia and have dealt with the health system for many years regarding PA. The suggestions made by Sleepy bunny are all correct and it’s especially worthwhile getting your hands on the books referred above as they are very informative and will help answer many of your questions.
My advice to is to is begin self injecting with either methylcobalamin or Hydroxocobalamin (which is available over the counter in most pharmacies here in Australia). The treatment recommendations for Aus are one (1mg) Hydroxocobalamin injection every three months which is completely insufficient if neurological symptoms are present. I have been giving myself methylcobalamin and I self inject subcutaneously with small insulin needles every single day (as I still suffer neurologically) and to assist with this absorption process, I’ve recently added methyl folate to my daily routine as well and as of three months ago, have finally got my B12 levels and all my regular pathology tests into normal range for the first time in over eight years!! This may not be the situation for you though, you may find a different a method may work for you. Unfortunately it is all trial and error for every individual.
Lastly, the most important thing I may recommend for you is BEGIN INJECTING DAILY!! Once neurological issues have begun it may take a long time for you to find what best works for you, that is the only unfortunate aspect of this PA diagnosis. This forum has many helpful and resourceful people who all have different experiences with their PA diagnosis and is well worth reading all the threads on this platform. As I have learned from my experience with my PA diagnosis, knowledge is power, the more you learn the better choices you can make in regards to your own health, stuff that no doctor can ever teach you.
Thanks for all the great responses, so much to get my head around. I’ve followed all the links from Sleepybunny, watched the Pacholok film, bought both books, downloaded the apps and as a result am now starting to question some other things the GP is having me do.
For one thing, he’s had me start on a daily regimen of Pantoprazole for my indigestion, which from what I’ve seen so far sounds like it could be detrimental to my ability to absorb B12? Also, he’s given me a script of Mobic (meloxicam) for the residual pain from my scoliosis surgery (bursitus from a remaining leg length discrepancy), even though he told me to stop taking aspirin because of the bleeding in my stomach.
I live in country New South Wales so have limited health options, but am thinking it might be worth the effort to organise a trip to a hematologist. Would that be the best specialist to see?
Also, I’m terrified of needles. Wouldn’t I be able to duck into my local nurse everyday instead…?
Nurses here in Aus, will not be able to give you the jab every day, there are strict protocols for B12 injections here. Firstly, your GP will have to authorise for the nurse to give you each jab every time. If you’re authorised by your GP you may be entitled for loading doses for the first few weeks, then it changes to fortnightly then every three months (with some variations in between). One dose every three months of Hydroxocobalamin,, (which you have to purchase from the pharmacy beforehand) is the current recommendation in Australia.
For this reason, I self inject as I was too symptomatic and the GP wouldn’t allow me to do more frequent injections.
Keep us posted on your progress and any issues that you encounter.
One of my relatives who started on b12 was also terrified of needles. Had to look away when i had one out. I did her first one and she couldn't look at all. Second one she wanted to try herself! Still afraid but willing. I was so shocked! She must have gotten a boost from that first one lol.
I'm not needlephobic but even i was shaking like a leaf the first few weeks. It can be tough at first but you can grab your favorite drink, put on a show or music, and do it at your own pace. There are also breathing and meditative techniques you can use to try and calm down.
Some people ask a relative to do it for them.
There are also autoinjectors you can buy, but check here first because you need the right combination of needles/syringes with the right machine, they are not interchangeable.
In the end it is absolutely worth it to have control over your own health and destiny.
If you have PA then you probably have low stomach acid. Pantaprazole is the last thing you want to take in that case, because it will lower stomach acid even more, blocking your ability to absorb all sorts of nutrients. If you have PA you have limited to no ability to absorb b12 orally anyway.
Did the Gastro give it to you or the GP? Obviously follow doctor's instructions first but in your shoes i would ask questions.
Did the gastro mention any type of gastritis or metaplasia?
Do you have a copy of your endoscopy report? Did you get a copy of your PA diagnosis? I don't know about there but in some countries diagnoses mysteriously disappear so it's good to have your own copies.
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