I'm shortly on my way to yet another health care appointment. This has been a long journey...
My current symptoms are:
• Tiredness and slowness – not feeling rested after sleep
• No concentration – losing words – forgetting - slow thinking
• Joint and muscle stiffness and pain – inc. Fingers
• Choking on saliva
• Burning hands and feet – Peripheral neuropathy? – lumps on toes today – ends sore
• Tingling feet and lower legs
• Burning/numb face/nose
• Temperature changes – periods of feeling cold – then hot
• Sore tongue – ulcers
• Neck/shoulders/top or arms ache and tired
• Lower back ache
• Hoarse voice – pressure on front of neck
I first presented with these symptoms (except for the bottom 3- this appointment is to check for thyroid issues) 4 years ago. The GP I had at the time, pushed my list back to me without reading it and said, 'I don't need to see that - tell me about your low mood.' (My only low mood was due to feeling so flipping ill, but I could never get them to accept this.)
I started to self-inject B12 around 2019 in the absence of any diagnosis and did improve, although I haven't followed a consistent regime due to negative responses from medics.
My original Active B12 (Medichecks) in 2019 was 89.2 pmol/L (Range: 37.5 - 188)
My latest (Jan 23) was >150 pmol/L (Range: 37.5 - 150)
My folate has constantly been c. 20ug/l (Range > 3.89)
Latest (Jan 23) was 26.27 ug/l
So here's my question(s):
1. Is it possible I have a B12 deficiency with this level of Active B12 in my system?
2. Is there a reason my folate remains high, even though I don't supplement?
Thanks as ever for any info and support. 😊
Written by
KBird01
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Once you start B12 supplementation your levels will be very high. This is why it is not recommended to test B12 levels after supplementation. At best it is a waste of time at worse it leads to your GP telling you to stop it as you have ' dangerous' levels. Which ignorant GPs do all the time. It happened to me and all my symptoms came back.
And yes you can still have a deficiency with high levels, It sometimes takes years of high levels of B12 to completely resolve B12D symptoms.
Thanks charks . Yes, here's the issue I'm facing I think. The nurse practitioner I saw was open to me having a PA antibody test, but has also just told me that if I have plenty of B12 in my system then this shows I don't have a deficiency. I did mention that I'd done some reading up and one thing I'd learned was that it could often be a bit more complicated than that, but she wasn't in agreement. She also said that I'd need to be off all supplements for around 2-3 months to get an accurate PA test result. This worries me, as I'm not sure how I'll get through life and work feeling as I do for the next 3 months without any treatment.
Other than that, we had a relatively positive appointment, where she also conceded that I might have an absorption problem, as my Vit D levels just won't go up, no matter how much I supplement and that there was clearly a 'systemic' issue which they needed to get to the bottom of.
The good news is that she's sent off for a whole battery of bloods, so fingers crossed we can at least rule some things out, if not in. Perhaps it might be then time to discuss a therapeutic trial of B12 if there are no other apparent causes. Wish me luck! 😉🤞
I do wish you luck but I'm afraid I am very pessimistic. The chances are you will have all the tests under the sun and the nurse still won't agreed that you have a problem with B12. Even if you get lucky and have a positive PA test ( the test is very iffy with lots of false negative results) you will only be offered 1 injection every 2/3 months. Nowhere near enough for most of us. There is a great deal of ignorance about B12D. It is so disheartening. Which is why the majority of us have to treat ourselves.
Yes, I know what you mean. You've certainly had a right journey looking at your posts!
I guess I've just got to the stage that if a GP is willing to do all the other blood tests and that rules out other possible causes, I'll feel more confident in taking matters into my own hands and going back to self-injecting properly. TBH I'm not that bothered about a diagnosis - after all, the treatment's the same. So long as I know there's nothing else going on, that'll do and I can get back on the road to recovery.
The only benefit to a diagnosis is that it is on your medical notes. Apart from that you are right. I only got one as I wanted to alert my family to the possibility they could get PA as well. Which was a waste of effort.
Just one thing. Don't give in to the nurse demanding you stop your B12 supplementation. It is frightening how quickly B12D symptoms return. You may suffer some irreversible damage. And it takes ages to get the symptoms back under control.
Thanks for the reassurance charks ! Yes, I'm seeing this all as the end point from which I start to take control of my own health. Take care and thanks again. 😊
good luck …. Just keep going with b12 injections …. Also check vitamin levels and cofactors you are taking vit d and folic acid etc …. I’m sure there are great posts somewhere here on cofactors … have a foggy head so can’t remember all !!
The only test that requires you to stop supplementing B12 is the AFAB test. Stop for at least two weeks.
In the absence of that test a positive PCAB along with high serum Gastrin are definitely diagnostic of PA.
The IFAB are more specific to PA. So, if IFAB is positive, along with other symptoms, then you most likely have PA if they are negative it does not rule out PA. It is important to check with the specific lab you are using how long you will need to stop B12 supplementation. DO NOT rely on your doctor, GP, nurse, or physician’s assistant as they typically do not know. Each lab is different as they may use different methods. Here in the US I use LabCorp and they require no B12 supplementation for at least one week. Here is their site as an example:
“Patient Prep: No specimen should be collected from a patient currently undergoing B12 therapy less than one week after the last B12 injection.”
I have seen other sites that say 48 hours and some with 2 weeks. My practice is to stop supplementing all vitamins at least 2 weeks prior to any blood test.
Since a negative IFAB test result does not indicate you do not have PA. You should ask your GP to add Parietal Cell Antibody (PCAB) and Serum Gastrin test. Although PCAB is less specific to PA. 90% of people with PA will test positive for PCAB there are other conditions that also test positive for PCAB such as, Diabetes, Gastric ulcer, and Thyroid disease. Although, a positive test of PCAB by itself is not diagnostic of PA. What is perfectly diagnostic for PA, in the absence of IFAB is a positive PCAB AND high level of serum Gastrin (with low or no stomach acid, Gastrin levels will be high). Gastrin is also shown to be high in those with PA but no achlorhydria.
Parietal cell antibodies in relation to basal serum gastrin in a normal population.
From Mayo Clinic in US: “Evaluating patients suspected of having pernicious anemia or autoimmune-mediated deficiency of vitamin B12 with or without megaloblastic anemia
Some of your symptoms may be related to Hashimoto’s Thyroiditis (Hypothyroidism). It is known that 40% of those with PA will also have Hashimoto’s. Here is an excellent book that I recommend to anyone with PA. It contains a lot of information and the best are self-assessment quizzes that by the end of the book you’ll get a weighted answer of how probable is it that you have Hash. I took this book along with copies of my completed quizzes to my doctor and that convinced her to order a blood test for thyroid antibodies, which btw came back positive. Here is link to Amazon.com
Thanks for all the info Rexz . Unfortunately it's not very likely my GP will order all the tests that you've recommended, apart from thyroid antibody. They were open to a PA test, but not right now. One of my ongoing concerns is that the test comes back negative, which is then taken as a definitive no for PA, meaning that's discounted as a cause. That's why to some extent I'd be happy to rule other possible causes out, then get them to agree to treat the symptoms as a 'therapeutic trial'.
Hello, I am sorry you are feeling so poorly. Reading your symtoms , it does seem that your B12 is low. I get those as well, when my injection is due. It does seem that many doctors are not listening to us. And to ask about your low mood seems like the GP is trying to fob you off. Of course you have low mood - so would the GP if they had those symptoms. I do hope you can get some help., I have been self injecting since Covid and found it very easy once you have found out how to do it. Good luck, and do let us know how you are getting on.
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