Hi I'm new to this and it's my first post. 3 years ago I had my first loading dose 6 injections within 2 weeks I wasn't given much info (was at my old Dr's surgery) my levels were 85 I was very unwell. Since having them I've had 2 separate injections to boost my b12 (at my new Dr's surgery) I had my last injection 6 months ago and the nurse told me to have a blood test 6 months later to check my levels which was the beginning of this month, I got a call back as my levels were 110 I'm currently having my loading dose again I'm having my 5th one today, she told me because my body can't store b12 I have prenecious anemia and need to have injections every 3 months. I'm just worried as they haven't even tested me for prenecious anemia? I've been told by a friend they need to look into why I'm not absorbing b12 and they need to check my thyroid and feretin levels is that correct?
my symptoms have always been heart palpations, passing out, fatigue, paleness, leg pains, pins and needles in my feet and stomach issues which I was told is IBS but I'm not so sure.
If anyone can give any information as to what I should do next I'd really appreciate it I'm pretty clueless and they haven't really provided me with much info
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sophie1_2013
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Your B12 is very low Sophie and should have been treated and monitored more frequently than in the past. It may be that you are not absorbing B12 because of gastric and IBS problems and it would be ideal to have more tests to confirm this as your neurological symptoms mean that you need to have injections more frequently (at least every two months) and until no further improvement. If PA is definitely diagnosed, treatment is for life.
I have found that avoiding gluten has made a huge difference to gastric and IBS problems, as prescriptions for antacids, PPIs, etc. further deplete B12.
You will see from page 6 of the BCSH guidelines and other links that thyroid problems, B12 and D deficiencies are usually interconnected (my sister has severe B12 def. and we both have autoimmune thyroid disease) and they impact on all the systems of the body, especially the thyroid :
Re. Testing for PA, these are summary points of the latest research document Cmim BMJ- A.A. Hunt B12, which you may want to show your GP, as you are experiencing neurological symptoms:
Cmim/BMJ document. " Summary:
* Vitamin B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.
* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."
* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.
* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay.
Hi Spohie,
Welcome here! Amn sorry you are in this PA boat, but hopefully with the right treatment this time, you may get a lot better than you obviously have been. Rather shocking your previous treatment. But best move on, it would be good if you got very involved in your treatment now, to avoid anymore mistakes.
Get copies of your blood tests, see what has or not been tested, keep a file so you can see what changes over time etc.
Learn as much as you can , read these links they will all help you, see:
Ask for a referral to a Gastro, get some tests that will exclude other reasons for being B12 def.
Make sure your serum folate and ferritin are tested as both can deplete with B12 treatment and all are needed in optimum supply for good blood production. Also as Polaris already writes thyroid problems are common with PA/B12 def so some testing will be wise.
As Polaris says - there are actually two treatment regimes for B12 deficiency. As you have neurological symptoms - the pins and needles and pains - you should be given loading shots every other day until your symptoms stop showing any improvement followed by once every 2 months.
I'm really sorry that you weren't given any information - echoes my own experience ... and it is so difficult to find good information.
You might find 'Could it Be B12?' by Sally Pachalok a useful book to read. Its American but it is a good exposition of what B12 Deficiency means.
The use of the term PA can be a bit haphazard as some use it as a general term for a B12 deficiency that isn't caused by lack of B12 in the diet, whereas in its strictest sense it is an autoimmune response that attacks the relatively delicate and complex mechanism by which most B12 is absorbed - binding with Intrinsic Factor and being absorbed by Pariety Cells in the ileum. There are other possible causes of malabsorption and whilst it is sometimes useful to know what the cause is the reality is that if it isn't due to diet then it is going to be some sort of malabsorption and that means finding a way of getting B12 into you that doesn't involve the gut - hence the injections.
Unfortunately B12 deficiency, particularly where due to PA is often associated with other problems like thyroid so yes, it would be a good idea to make sure that your thyroid levels have been tested. There is an overlap of symptoms and having one cause doesn't rule out the possibility that both are in play.
Looking at your ferritin levels is about looking to see if you are anaemic - anaemia is one of the consequences of B12 deficiency but not necessarily one of the first ones to appear.
You should also get your folate (B9) levels checked - was probably done at the same time as your B12 - as your body needs B9 in order to absorb and use B12.
B12 is used in a lot of the bodys systems which is why a deficiency can manifest itself in such a wide range of symptoms. Different people have different symptoms at different times and it can take years and even decades for a full B12 deficiency to show up - though your levels are really low.
You may find it useful to keep a diary of symptoms as some elements of recovery can be quite low - particularly if the deficiency has gone on for a while - some people don't really notice their energy levels coming back up for several months.
Really hope that you feel better soon and continue to improve.
I was going to get an app with my Dr's today to get tested for these things so it's b9, thyroid, ferritin & instinct factor is that right? Also my main problem I find is my stomach I got told was ibs but I'm not so sure who's best to speak to about that? Also got told to be refered to a hematologist now is that just in the us?
I can't believe they don't tell you much about It one nurse said it's no very common to have it especially me as I'm 23 and got it when I was 19 the other nurse said it's really common and nothing to worry about 80 out of 100 people have it, now that's not what I've read on the Internet?
Will the Dr's just think I'm silly for pushing to get tested and to find out what this is when they are already giving me treatment (injections) I see it as there giving me these injections to make me feel better but they've not bothered to find out the main cause of it or to see if I'm even lacking in anything else which I think is quite bad.
Thank you again for this as you can tell I'm pretty clueless but I really do appreciate all the help.
Hi Sophie,
Both my Daughters were diagnosed in their early twenties and both are doing fine now. To know why you are B12 def can be hard to find out and test can be expensive. Not every one gets an answer, so much is still unknown about PA/B12 de. In my family there is a clear line of B12 def, but what the reason is, is not clear, no antibodies to IF, something genetic. I have after 30 year diagnosis of IBS finally agreed to see a Gastro, have had colonoscopy and endoscopy and it resulted in abnormal terminal ileum, which does explain a lot, but not for all in my family. So answers can be difficult to get, seeing a haematologist is always wise, and a gastro is worth it, with IBS symptoms. There are other reasons such as celiac disease that can cause B12 def etc, so very worth it.
I hope this helps, read the links supplied, they will help you understand more,
Numbers for incidence can vary very much depending on populations that you look at - I know there are some studies involving Ethiopians that have come back with really high levels of incidence but that seems to be because of diet.
The CDC website in the US (the equivalent of NICE in the UK) starts its B12 section with the headline that 1 in 31 people over the age of 51 will have vitamin B12 deficiency - which is possibly an understatement - it certainly does get more prevalent with age because of changes in stomach acid levels but there are so many possible reasons why someone could have absorption problems that you could drive yourself mad trying to get to the bottom of things and at the end of the day the treatment is the same.
Possibly it will change when people know more about B12 as it may impact on how well you respond to the injections and how much B12 you need and possibly even whether you find alternatives to injections like sprays work for you ... and which form of B12 you respond best to (cyano, hydroxo, methyl) there are just so many unknowns and I think one of the problems is that GPs are not only unaware of what B12 really is but also unaware of how little is really known about the condition and treatment ... A really wise man isn't someone who knows a lot but someone who knows the limits of their knowledge, is aware of it and actively strives to move the boundaries.
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