Hi. I am new to the PA society and need some advice.
I would like to know where I can go to get tested for pernicious anaemia.
I have suffered from numb hands and feet, tiredness and dizziness for at least ten years. About 4 years ago I began to suffer from severe stomach pains. About a year or two ago I went to my GP regarding my stomach problems. After being initially told I had IBS I was eventually screened for B12 deficiency and the results showed a level of 114. I was not told what this meant, but my GP informed me that I needed B12 injections for the rest of my life. She also made a referral to Gastroenterology. I have now been having B12 injections for over a year.
Since then my GP has retired. The gastroenterology consultant informed me that I have constipation and cannot find a cause. He also informed me that dizziness and being tired are unlikely to be due to my low B12. The consultant written to my GP stating that he thinks I have pernicious anaemia and that he requested a test for this but it was rejected by the lab. He has also rechecked my B12 levels in April which were recorded as being 540. The consultant has now written to my GP stating that he thinks I have PA, but there is nothing wrong with me and that as my B12 levels are now normal I no longer require B12 injections. He has suggested that all I require are laxatives and to drink more fluid.
I am aware that other blood tests have been completed. The consultant/ hospital will not tell me the results. The doctors at my GP surgery will not tell me what the tests were for or the results as ‘it’s nothing to do with them as the tests were completed by the hospital’.
I’ve been feeling better since having the injections, although I still suffer dizziness and tiredness. I’m really worried that if I go back to my GP they will stop the injections. I just keep going back to the nurse and have not told her about the letter from the consultant!
On top of the three monthly injections I am also taking B12 tablets, B12 oral spray and folic acid as my symptoms return about 4 to 5 weeks after my injections.
Any advice would be gratefully received. Thanks.
Written by
linda75
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Hi if you have a definite diagnosis of pernicious anaemia then they must have checked your intrinsic factor autoantibodies. Ask for the result. You will find BCSH guidelines useful. Basically they say if you have positive intrinsic factor then B12 for life and even if negative result and clinical improvement then B12 for life. This is because IF test is only 50 % sensitive
Thanks for your reply and the info on the guidelines.
According to the consultant at the hospital the test for PA was rejected by the lab. I have never had a formal diagnosis. This is something I would like to have done.
The remaining doctors at my GP surgery are being very unhelpful as the GP who initially requested the B12 test has retired.
The doctors at my surgery say it is nothing to do with them as they did not request the initial B12 test or make the referral to the hospital.
Re"I am aware that other blood tests have been completed. The consultant/ hospital will not tell me the results. The doctors at my GP surgery will not tell me what the tests were for or the results as ‘it’s nothing to do with them as the tests were completed by the hospital’. "
You can ask for copies of all your blood test under freedom of information. You can request to see your whole file. Some copy charge is possible but you can not in principle be refused.
You have the right to see most health records held about you, subject to certain safeguards. You are entitled to be informed of the uses of the information, who has access to them and how you can arrange to see your records. This information is provided in GP practices and NHS Trusts in the form of posters and leaflets. For more information on how the information is issued, you may wish to speak to the health professional in charge of your case. You may have to pay a fee to see your health records."
I'd get copies to see what has or not been tested etc, and keep a file to include any future tests. It helps to see what is OK, what may be marginal and what other issues there may be.
First reaction to this is anger and frustration as it is often very hard to belief just how ignorant medics can be when it comes to B12 Deficiency.
Marre is correct about access to your records. You have a right to the information under the freedom of information act. They can make a charge to cover administration costs but this cannot be excessive and if they continue to refuse then you should contact the local patient liaison service.
There are other reasons why you could be B12 deficient other than PA - as you get older acidity levels in your gut change making it more difficult for the absorption process to work properly and leading to PA. Appropriate treatment for any absorption problem is going to be supplementation via a non-oral route and in the UK that means injection.
Serum B12 test levels aren't a good guide to what is going on at the cellular level and actually being just over 500 doesn't really mean that you don't have a B12 problem.
The guidelines state that you should be treated in accordance with your symptoms not test results and this is particularly important after you have started supplementation as that will affect your results.
so, if your GP does talk about taking away your injections you should draw their attention to this.
I don't really see how gastro specialist can categorically tell you that the dizziness can't be B12 - they are not neurology specialists and that group of symptoms is neurologically related ... and if you have neuro symptoms you should actually be receiving maintenance shots every 2 months not every 3.
like you I find that my symptoms start to return after about 4-5 weeks.
There doesn't really seem to be any scientific basis that anyone can categorically point to to justify either 2 months for neuro symptoms or 3 months without for the maintenance regime. Closest anyone seems to be able to get is a comparison of retention rates for cyanocobalamin v hydroxocobalamin done in the 1960s that showed that on average hydroxocobalamin was retained 2x as long but the study also showed a significantly wide variation in this which meant that the results definitely didn't equate to hydroxocobalamin (used in UK) will be retained twice as long as cyanocobalamin.
Like you I supplement - with a nasal spray.
I really hope that you can get your current GP to listen. Often the worst thing about this problem is the fear that the treatment will be restricted or with-held.
My own experience was being told in hospital that I was B12 deficient after a fall and being sent home with injections and nothing else. GP didn't really seem to have a clue. Was locum that told me I needed to continue with injections for rest of my life. My GP also didn't believe that continuing B12 problems could be what was causing me to have balance problems and feel tired all the time because I was on maintenance shots ... though on reflection I don't think the loading shots were done correctly - was in hospital with a broken ankle after a fall and got a lot of fuss about osteoporosis but nobody - despite the low B12 queried whether that could have been a factor in the fall - as balance problems seem to be a well known symptom of low B12 that's a bit hard to swallow ... even worse it was a teaching hospital and the group following the consultant around on rounds really seemed to not have a clue what B12 was about - consultant himself (ok orthopaedics but still ...) only mentioned constipation and diarrhoea.
Thanks for the link and all the information. It is worrying that so many people have difficulty getting a diagnosis and treatment. Over the years I’ve been told that I’m either depressed or pregnant, or that I am imagining things when I’ve mentioned symptoms such as extreme fatigue and dizziness.
Now I’ve found the PA society website and this forum I think I will be better equipped to take on my GP!
Kind regards
Linda
Its very sad when you are told its all in your mind, years later you find out it never was your mind, more GP's mind..
You have had so much helpful advice from knowledgeable people - am sure it will help you to be firm but polite with those Receptionists It is your body and your records ! Just thought you may find the following website useful....
To prevent cognitive decline it has been suggested that a level of 1000 is required ! Your Doc was wrong to say you did not require any more B12 as your levels were good - most people know that once on treatment the blood tests are not an indicator....as the results are skewed.
Thanks for the link to the b12 deficiency website. Its got some really intersting/ useful stuff on there. The information you and everyone else have provided will certainly help make sure that I'm well informed.
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It is your body and your records ! Just thought you may find the following website useful....
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