Hello,
Recently been diagnosed as having B12 deficiency,i have had 6 injections over 3 weeks ,approx 4 days later nurse came and took bloods,a few days later GP rings to say levels still low is this normal for the B12 to still be low ?
Gp doing waiting upon test now for Pernicious Anemia .
My brother had 6 injections and bloods were still low and had to have another 6 injections. I dont know the answer, we are all unique.
How is your folate ferritin iron vit D?How low in b12 were you to start with
And what are you now. ?
How are you actually feeling ?
If the "pernicious anaemia test" is IFab -intrinsic factor antibody test - bear in mind this will give a negative/positive result. While a positive result will give you a PA diagnosis, a negative result cannot rule it out. So you can be PA (IFab neg).
A negative result tells you that, at that point in time, you have no detectible antibodies attacking your intrinsic factor as far as they can tell. But it's also possible that you have no detectible intrinsic factor to attack ! Or you may go on to develop antibodies later.
Martyn Hooper, the founder of the Pernicious Anaemia Society, had three IFab tests before getting a positive result. It would not be easy to find a GP willing to repeat IFab tests - although strangely, many seem to want to retest B12 serum levels without any good reason (such as lack of response/worsening symptoms)- and contrary to medical guidance and advice.
In this case though, your B12 retesting has revealed a problem. It isn't a usual result -not even here- but as Hidden has a brother who had a similar problem, at least you aren't alone in this.
I hope you get some answers soon, and more importantly, get some B12 going where it can help you.
I had the no intrinsic factor found result. So they didn’t find any antibodies. Cardiologist explained there was no intrinsic factor being made in my stomach and it was an autoimmune condition.
I have had several negative IFab test results over the years.So also no antibodies.
The fact that you had a cardiologist discuss autoimmune conditions with you (pernicious anaemia ?) suggests that your journey in searching for answers may have been long and difficult.
If you have been told that you have PA, it would be a good idea to get it in writing - so I hope you are automatically copied in when s/he reports back to your GP.
(Are you in the UK, by the way ?)
Assuming you have been started on B12 injections ?
I’m now in Australia. In 2014 my B12 was 384 ng/ml folate was 3.2 ug/l but nothing was said . I had fatigue, shortness of breath, lacking motivation, aches etc all put down to being a sole carer for my late father.
2015 emigrated to Australia and felt better up until 2018 when I got all the signs mentioned earlier again, by 2019!I was getting bad stomach issues and saw gastroenterologist who diagnosed hypercalcemia, by December I was bedridden waiting for an operation to treat hyperparathyroidism. Which I had may 2020.
Brain fog went immediately and started to feel better till October when I got severe pains in my hands. GP said it was arthritis.
So I changed doctors and got an ex emergency department doctor who was now training to be a Gp. He spotted my high ferritin levels and tested for the cause of that and diagnosed low testosterone. Started injections for that but didn’t get better for long. During this time was also diagnosed with ischemic heart disease and tachycardia.
In February I checked my B12 records and found it had dropped in 2018 so got GP to test it and it was lower again. He gave me three shots over three weeks and my folate dropped so he decided on three more two weeks apart. I started self treatment then as per the guidelines. (Did not tell him) saw new cardiologist and showed him results he ordered intrinsic factor test and three months later confirmed the PA diagnosis. And that I need regular B12 , folate and B6
GP now thinks I could have had it all my life. Especially as I described getting pains and fatigue in my teens. When my legs were so painful I could hardly walk. I thought it was “ growing pains”.
You have been through an awful lot. How are you now ?
Starting to see the end of the tunnel!But it’s a long recovery ahead.
My blood work is looking good, apart from my haemoglobin , which
Is elevated now. That’s down to the testosterone injections and will need venesection, to lower it. it’s a known side effect. Endocrinologist warned about it, just need GP to do the procedure.
I see a neurologist in September so hopefully will find out how much damage has been done.
The good days are getting better each time. But I need to be careful how much I do. As I need a couple of days to recover if I over do it!
I’m glad my wife and I decided I should follow the guidelines for symptomatic peripheral neuropathy and treat every other day. I know I’m lucky that the viles are available over the counter in Australia, as it’s classed as a vitamin not medication.
Yes -apparently some difficulties getting B12 right now. I self injected every other day for a good couple of years before I reduced to every three days. I now know that for me, sometimes more is needed, never less (I don't get away with that for long). If I've done too much, or if I've been ill. After I had covid, I went back to EOD for a while. Long after improvements are not to be expected, they still seem able to happen.
You will know when/ if you are able to make a reduction - just don't drop to anything dramatic. Cautious moves that can be reversed without feeling like a failure, and without going right back to your worst. No need to alter anything that is working well for you. Also I've found that it takes a few weeks to know for sure whether this is a workable frequency or not.
I am glad that you decided to follow correct guidelines, even though daunting, and good that you and your wife discussed it. Good to be included from the start -and good to know that you have support.
Easy, when you are having a good run to overdo it, trying to get the stuff done that you've been unable to do. Just in case it all goes again. Which becomes a bit of a self-fulfilling prophesy.
Learning moderation is hard work !
Take it easy, Scott-rock
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