Hi,
In May 2021 I had the intrinsic factor blood test and my results were as follows.
89 u/ml. With a normal range of 0-24 u/ml. And the following notes.
The presence of anti intrinsic factor antibodies together with a low vitamin B12 level is diagnostic of pernicious anaemia
Does this make sense to anyone and could you please explain it to me as they said I had pernicious anaemia but didn't fully explain the results.
Thanks in advance
Welcome here Mysticat81,
You have a firm diagnosis of the disease. Please obtain hard copies of these. Your symptoms are yours. It is worth keeping a Symptoms Diary. Most of us on here have a whole array of weird and wonderful ones.
You really need to learn about this illness because it is totally bizarre. Become a member of the Pernicious Anaemia Society :-
pernicious-anaemia-society.org
You can be involved in research, support groups and they are the only organisation that can produce statistics. Plus, you will be privy to accurate information. Please know the misdiagnoses too :-
Plus, buy or download Dr Joseph Chandy and Hugo Minney (PhD)’s book Vitamin B12 Deficiency in Practice.
There are lots of myths and misconceptions about this disease/condition. Even in the Medical Profession. Please note the range and the cut-off levels for B12, ferritin, vitamin D and folate in YOUR area of the U.K.
Standard treatment in the U.K. is Loading doses of 1mg/ml of Hydroxycobalamin intramuscularly (usually the upper arm) Every Other Day for 2 weeks. Then we are put onto 3 monthly / 12 weekly injections. However, the majority of us cannot survive on this. So, we do what we have to.*
Recovery will depend on how old you are, length of deficiency, severity of deficiency, how active you are. So, whether you run your own business, and have dependants. Whether you have other illnesses or conditions. There is no set formula for Recovery (i.e. 3 months of daily injections). Plus, we can have relapses due to pushing ourselves too hard, having to reach deadlines, viruses. We know that when the apple cart has been upset, it takes time to re-balance again.
Doctors have a tendency to re-order a Vitamin B12 test to check our levels which is incorrect. This is from the British Society for Haematology.
This disease/condition is Symptoms based. A blood test shows a number in units not pain, fatigue or stamina.
This is the start of a journey. It is a massive learning curve so take it slow and steady. It is superbly important that your data is collected because of your age. A lot of research states that it affects only over 65 year olds. This is total hogwash.
Cofion cynnes
🐳
Thank you ever so much for your amazing, in depth response. I will definitely have a look at the sites and book you mention and try to understand it better. I also have hypothyroidism (potentially Hashimotos disease) and suffer with chronic migraines, so all the fun stuff. Meaning little or no energy at the best of times. So anything that will help me improve my energy is extremely welcome.
Really do appreciate your help with this.
Cat
Hi. Scientist, not medic.
Narwhal's summary is excellent. [As ever]. Reports make sense to the folks who deal with them day in, day out, however one of the reasons we have GPs etc is to hep us to interpret lab results. This doesn't seem to have happened in your case.
I apologise on behalf of the whole NHS for this omission!
The issuing of reports stating a 'normal range' for IFAb is misleading and confusing. The '0-24' for normal is, er, what's the word? Rubbish. A low result is simply 'noise' in the system. Like when your radio wander off the station, and simply hisses. We don't live in a perfect World, and we don't have an international standard for IFAb either, so it's no wonder it's confusing. Hence reporting 'u' rather than'IU'. It's simply a number out of the machine.
It's likely that the number would rise if repeated in the future, but may, then again, fall. It means nothing other than it's positive, and even if it disappeared altogether, it wouldn't mean that 'the PA had gone away.' Around half of PA cases never have a positive IFAb anyway. One thing that we've all learned from the whole Covid business is that antibody levels rise and fall.
T'was ever thus.
My most debilitating symptom was migraine and the frequency and intensity dropped away with adequate treatment for b12 and hypothyroidism. I hope this is the case for you. A challenge may be that the standard treatment protocols tend, probably for good reason, to be fairly cautious. Obviously see how it goes and give it time but you can read on both the PA and hypo sections of HU about the journey of others which may be of interest.
Best wishes
You have a definitive diagnosis of Pernicious anemia. The recommendation is to have at least every other day injections until you have no neurological symptoms. Then I would log your symptoms so you can find a schedule that keeps the symptoms at bay. They often default to every 3 months in the UK but for so many people, that is not enough to prevent nerve damage. You will need treatment for the rest of your life. Once you start treatment, it makes no sense to check your B12 levels. Often they are too high (but only because of the injections) and then doctors who do not understand PA use that as a reason to cut off the B12 injections and this would be harmful to your health.
I have had b12 levels of 2000 for several years. I have numb toes, blue moons on my thumbnails and my lips have a blue tinge to them that has gotten more noticeable over the last few years. They did all the testing and turns out my intrinsic antibodies are 1.8 - positive for pernicious anemia.
I’ve been told I need to take 1mg hydroxycobalomin daily by injection.
How can my serum B12 be 2000 and yet I’m deficient in B12? Won’t adding the injections cause the B12 to go even higher?
Will the blue lips, thumbnails and neuropathy like symptoms go away with these daily injections?
FYI, my ferritin was 89, and my TINC and iron showed perfectly normal.
Thank you!
If your neuropathy is a result of pernicious anemia, it will go away but you probably need every other day (at least) loading doses until it does go away. Were you taking any B12 supplements? High B12 without supplementation can be a sign of other problems that should be investigated by your doctor. It's normal for people supplementing to have really high B12 levels, which is why they say not to test them. It's possible you could have more than one thing going on.
It would be good for your doctor to check for polycythemia vera. healthline.com/health/blue-... It can cause blue lips and high B12 levels. mountsinai.org/health-libra...
Note however, you mentioned: "I’ve been told I need to take 1mg hydroxycobalomin daily by injection". If you have been having injections and your levels are at 2000, it is most likely that your levels are high because you are having injections. But then I would ask, why are your levels being tested? The advice for PA patients is to not test the B12 levels once treatments have started.
Polycythemia vera can also cause the blue moons on your finger nails. healthline.com/health/blue-...
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