I’m new here and just looking for some advice. I’ve been feeling tired for as long as I can remember, but over the last few years it’s beyond tired, some days I am absolutely exhausted and that’s when I’ve just woken up!
I’m 44 years old, I ache everywhere, my hands, legs & feet swell, and sometimes even moving my fingers is difficult. My memory is shocking, I used to be able to retain information but now sometimes I can’t even find my words.
I had blood tests done nearly 3 weeks ago, they have shown abnormalities. My RBC was 3.76, monocytes count was 0.82 and my B12 was 95.
The nurse has said that I need further tests before they can start B12, can anyone tell me what these tests might be?
Most of all can anyone reassure me that I’m not going insane. Some days I just find it so hard to function.
Thank you
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Jaiday
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I think your blood test reading of 95 for b12 is the answer to your problems. I dont understand why they are not giving you b12 loading injections, 5 or 6 injections every other day. My brother has just been diagnosed and has received his straight away, he didn't have to have further tests. I can assure you are not going insane👍. Read as much information as you can, it will help you navigate answers to different questions, and assists you with information in how to deal with doctors who are not very well educated in b12.
In that I'll bet your doctors want you to take a test for Intrinsic Factor antibodies before you start on the injections. IF is the protein, made in the stomach, that carries the B12 molecule across the gut wall (it's too large to get across unaided). Some people with PA have an antibody that attacks this protein. A positive test for that antibody means you definitely have Pernicious Anaemia.
The doctors probably think that you need to wait a time after B12 injections to test for IF antibodies. That was true a decade ago. With the modern tests you don't need to wait at all, although many say its best to wait a few days.
I would talk to the doctor and ask them to do whatever tests they need to do as soon as possible.
What were the full results for B12? It should have been described with units and, most importantly, a range.
There are two types of test for B12. Most doctors will use the standard serum test. That will have a range of something like 120 - 599. The other is becoming more common. That is the 'Active' test, with a range of something like 45 - 180.
If your test was the serum test, then 90 is very low. If it is the active test then 90 is quite high.
If it is the serum test then there is no reason at all why your doctors should be waiting. They should be starting you on a course of B12 injections immediately.
Most of the NHS ranges are in pg/ml that I've seen. In pg/ml, yours is 128 which is low but might just be over the threshold depending on your location.
Thank you. I’ll read that now. I have access to my records so I can see the test results, there are no ranges for for folate or ferritin, but the previous results are all higher and the graphs just show a downward trend 📉
You might be able to see results and ranges if you scroll down where you are seeing the graphs.
There is absolutely no reason at all to have other blood tests. When I had low B12 I was started on injections immediately. I was then tested for IF and parietal cell antibodies by the of which were positive and PA was diagnosed. There’s a manic obsession in the GP profession for trying to prove that PA is not the cause of low B12 in sing tests which are not reliable indicators it would seem.
I too had a same reading to yours and was told I needed an intrinsic blood test which I had to wait 3 weeks for a blood test appointment then I had to wait 2 weeks for results! Only to be told I have pernicious anaemia and need injections! I’m on my second week of injections and feel minutely better. I too feel like I’m going mad and am so tired and foggy headed and headaches and have neurological problems but am hoping over the next few months I get better. Hope you get sorted soon!
Thank you for your reply. I hope you start to feel much better soon. I feel absolutely awful today, even my eyesight seems to be affected. I’m glad I’ve found this group and that I’m not going crazy
Sorry to read your feeling awful today. I would ring the doctor and tell him how bad you are. Eyesight is another symptom, tell him your vision is going, you really need to get them to give you injections.I'm keeping my fingers crossed for you.
Well done, I would try and get them to give you injection tomorrow, explain to them you have never ever experienced all these problems beforeAnd at the moment you cant do anything.
I cannot understand the reason to make you wait.- You are feeling very ill and worsening. - You have B12 deficiency (95 pmol/L)
- You have a low ferritin level of 13 ug/L - my local range is 13-150 ug/L, but symptoms can be present at less than 60 ug/L, and my consultant prefers that it be 80 +
- You have a low folate level of 4.8 - my local range is 4.6-18.7 ug/L but is better in top 1/3 of range: but do not address this lack until B12 safely raised first- it can skew any blood test results (and decisions).
- You have seen a drop in test results, which is a clear indication of deterioration.
The anti-intrinsic factor antibody test ( IFAB) if it gives a positive result would show that you have pernicious anaemia, but a negative result wouldn't show that you don't. Only 40-60% of those with PA test positive. Martyn Hooper the founder of the Pernicious Anaemia Society had three tests before getting a positive result. I doubt many GPs would be aware of this, but their medical guidance does point out that PA (IFab-neg) is a diagnosis.
In a study of 70 patients with PA, only 45 had very low B12 levels (under 100pg/ml), no anaemia found in 13, and no macrocytosis in 23.
There are more examples (taken from Martyn Hooper's book*) - but you can see my point. There is no reliable yes/no marker for PA, if that is what they are looking for before "allowing" you to have B12 treatment.
Perhaps they would do better by asking you a few questions about your diet ?
If this lack isn't completely diet-related, there must be a reason why you are not able to access B12 from your food, as you were able to previously. This is not a good reason for you to continue on a downward path.
Finally, I hope that you are well enough to ensure that your vitamin D level is checked. It is important: I was found to have osteoporosis of the spine.
It may take some time for you to get well, and this is just the start of the process of getting this condition under control, but it is possible. There is plenty of support, advice and above all, kindness to be found here if and when needed.
* What You Need To Know About Pernicious Anaemia and Vitamin B12 Deficiency
Thank you for taking the time to reply. It’s so helpful to have this support and the information you give is really appreciated. I think I’ve been getting progressively worse for so long I don’t remember what well feels like.
....which is another reason why, when eventually found, B12 deficiency should not be ignored !It took a while to get this ill and will take a while to recover- the sooner that recovery starts, the better. Wishing you very, very well.
Hi, thank you for asking. I still feel awful. My mouth is sore today and I have what looks like an ulcer on my throat (I’ve begun to think I do nothing but moan). I had the blood tests and the fbc results came back today - all within normal range, albeit some towards the outer edges of the range. So my monocytes are now 0.80 instead of 0.82. I don’t know what, if any other tests they did. I’m fast losing any faith that anything will be done, unfortunately
I know nothing about monocytes, I understand how you feel I was in the same boat. The ulcer on your throat is a sign things are not right. Have you received the results and ranges. If not I would ask for them, even if your results are on the lower end it can still make you feel awful. Your b12 results were low, they need addressing.Sorry to say the nhs are useless when it comes to b12.
Hi, I have access to my records so I can see that the fbc has come back but the others aren’t back yet, they said early next week, so just more waiting. I’m really grateful for this forum, it just helps to know that other people understand how you’re feeling and you’re not alone 🙂
Your right in having a forum to share your feelings, it's difficult when you live with people who see you every day to explain everything, they just see a normal person who on the surface looks OK.If we had a broken arm we'd get more sympathy
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