Doctor says don't need jabs as B12 now OK!!!

Hi all - I've written on here previously about my husband and how ill he was and how he had a blood test, was called back quickly and had a further 2. He was told his B12 was too low and had the loading doses followed by 3 monthly jabs. When he requested the last one he was told by the nurse he had to see the doctor. The doctor said his B12 was now fine and he did not need any more. He has to have another blood test this month and I'm so worried she will say no more jabs because I saw such a dramatic change in him, in particular with his memory and depression/anxiety when he had them and I don't want him going back down again. As it is, I see the changes happening with a month of each jab being due. He is still suffering from horrible pins and needles in his hands that has never gone away but it's the mood changes that scare him as he has never suffered from depression in his life. I have no idea if he PA or not as she has not told him. Of course if he does not that's great, but why did she do all the initial blood tests and give him the jabs in the first place? Reading the posts on here I can now see how you struggle to get this cheap but life changing treatment, it's a disgrace,

11 Replies

oldestnewest
  • Personally i would suggest you attend his next appointment with him and tell the gp exactly what you have said here. Gp needs to investigate why it happened and why his ongoing and increasing symptoms ease with the injections but quickly return. Both pins and needles and depression are symptoms of neuro involvement but it can be hard to get the gps to accept this.

  • Many thanks Lisa - it's difficult when his doctor is telling him this and she's the expert! He says he just does not feel right. He's going to write a polite letter before he goes to see her again, asking why he ever had to have the jabs in the first place. He runs a busy company and he needs to be on the ball and well and other people have mentioned to me the issues with his memory and mood as it's so unusual for him, so it's not just me who's noticed the change over the last few years. Will also be asking why there is such a marked improvement from when it was first picked up and he got the treatment.

  • PA is NOT the only thing that will cause a B12 absorption problem.

    If your husband has neurological symptoms - the tingling in his hands and feet then according to the BCSH and Nice guidelines he should be on 2 monthly maintenance shots - though if there are other conditions like diabetes going on the GP may be dismissing them as down to diabetes - if no diabetes then ...

    Both guidelines make it quite clear that treatment is for life if the problem is an absorption problem rather than a total lack of B12 in the diet.

    It may be that your GP is mistakenly associating the B12 deficiency with macrocytosis and the macrocytosis has now cleared. However, macrocytosis is a symptom and whilst it may explain some symptoms it doesn't explain all.

    The levels of B12 in blood don't mean anything after treatment has started unless they remain low. It isn't hte level of B12 in the blood that causes the problem - it is what is happening at the cell level and there are a number of things that can go wrong between the blood and the cell - some of which may actually be the result of the treatment - leading to a functional B12 deficiency - plenty in the blood but not enough available in cells where it is actually needed. One study in Denmark implied that this affected 40% of people receiving treatment for B12. The only effective treatment in these cases appears to be more B12 more frequently to keep the levels high enough to beat whatever is causing the blockage - like a dam in the way and the only way to get water across is for there to be so much water that it stays over the top of the dam.

    I suggest that you keep a diary of your husbands symptoms and mark when they start returning and their severity so you can present that to the GP though just having you there saying that the symptoms come back after 2 months - and pointing to the BCSH guidelines on treatment where there is neurological involvement may be enough.

    Unfortunately your fears about what will happen to your husband if the injections are withdrawn is correct as he is no longer able to store and recycle B12 in the way a healthy person would - as that relies uppon reabsorption in the ileum which isn't going to happen so any B12 the body tries to store will just leak away and even the high levels in his blood will eventually drop down to being at deficient levels again - though that could take a while and he would have been functionally deficient and in problems for a while before that happened.

    If you have the financial means and the GP really won't budget from bloody minded stupidity (and probably negligent bloody minded stupidity) then you can treat yourself - try high dose supplements - sublingual tablets or sprays, nasal sprays, or skin patches - though they don't always work for people - or even self injecting if those don't work.

  • Many thanks for your reply. When he had the initial blood tests he was told there was something amiss with his red blood cells, and his B12 was too low. I could understand if it was his diet but he eats all the things that have it in such as seafood, meat, dairy lots of green veg. I think they were larger? Maybe this has improved and this is why she is saying he's OK. Well I know he's not OK and I think he's worried that it could be dementia coming on and this thought is lurking in the background. We've had the worst two years with work problems, our son being so ill and the loss of two of his brothers. The much elder one had dementia but was many years older. I know that low B12 can mimic this and if he did not get more or less back to normal after his jabs I'd be very concerned. His younger brother has just been diagnosed with cancer of the gullet and I know it's going to be very hard going for us all, and I think my husband will struggle to cope with this as well. It's difficult with the depression side of things to know whether it's because of the troubles we've had and some it must be, but I know in my heart it's more than that.

  • Yes, sounds like he had macrocytosis. This is caused by not enough B12 being available in the bone marrow where red blood cells are produced and would clear as the red blood cells died and were replaced by healthy red blood cells - blood cells have an average life time of about 4 months.

    However, anaemia doesn't explain the tingling - which is caused by not enough B12 being available to maintain the insulating lining around nerve cells ... and lack of energy and muscle weakness are yet another use of B12 - in the process for releasing energy in muscles, ie there is an awful lot more to B12 than macrocytosis. See that @fbirder has posted link to the compendium of materials that he put together which I'd recommend you study and present to your GP - they obviously need to be educated about exactly what B12 deficiency means.

    However, at the end of the day - if you really can't get the GP to listen - and can't find one that will then self treatment is a very real option and there are lots of possibilities to explore before you resort to sourcing injectable B12 from outside the UK (available over the counter in a lot of european countries - including Germany and France).

  • I am based in the UK and providing advice that I would consider to be appropriate for someone that I believe to be based in the UK. Our health set up is quite different from the set up you have in the US.

  • I feel for your husband, I have recently been told the same. My levels went up to 225 after one shot and 2 tablets a day, so apparently now I don't need to tablets any more. I am capable of absorbing according to a blood test so I have never been allowed the shots (only got one when I begged for one). If I get anywhere with my test and GP I will let you know. I have asked a similar question to yours on here too.

    I'm contemplating going private as I have cover through work but it seems extreme just to get some vitamin tablets!

    Let us know how he gets on.

  • Read my summary for details on the scientific opinion on the futility of further blood tests and how treatment is for life unless the original deficiency was due to a known temporary cause. frankhollis.com/temp/Summar...

  • "I have no idea if he PA or not as she has not told him"

    Your husband has the right to access copies of his blood tests. He might need to give a formal written request to the surgery. I always get copies of all my blood tests after finding out that what I was told was normal to my face or over the phone was not always normal on teh copies.

    In relation to B12 , I get copies of B12, folate, ferritin, full blood count. he could ask if an IFA test has been done.

    He could also apply to have a whole set of his medical notes, would cost a fair amount, think at least £50. Some people on this forum have found out that they were diagnosed with PA in the past but never told.

    Link about causes of B12 deficiency

    b12deficiency.info/what-are...

    What symptoms does he have? See Symptoms lists below, I ticked all my symptoms on PAS Symptoms Checklist and gave a copy to GPs.

    b12deficiency.info/signs-an...

    UK documents make it clear that people who are symptomatic for B12 deficiency shoudl be treated even if B12 blod levels are within range.

    1) google "BCSh Cobalamin and Folate guidelines

    2)http://www.bmj.com/content/349/bmj.g5226

    See 5th summary point in above link.

    Some people find it helpful to join PAS. the PAs can sometime sintervene on behalf of members when treatment is stopped.

    pernicious-anaemia-society....

    There may be stories on Martyn Hooper's blog that are relevant to you.

    martynhooper.com/2016/04/24...

    Have you read Martyn Hooper's latest book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" i gave a copy to my GPs.

    "he was told there was something amiss with his red blood cells"

    I'm guessing they may have found evidence of macrocytosis (enlarged red bklood cells). If you have results for recent full blood count(FBC) test there may be clues on this. high MCVand high MCH can indicate the possibility of macrocytosis. Macrocytosis can also be caused by low folate levels.

    patient.info/doctor/macrocy...

    labtestsonline.org.uk/under...

    patient.info/doctor/pernici...

    patient.info/doctor/folate-...

    "He's going to write a polite letter"

    This next link might be helpful.

  • b12deficiency.info/b12-writ...

    This link might be helpful as has ideas for what to write to GPs etc.

    bmj.com/content/349/bmj.g5226

    Hopefully working link to BMJ article.

  • If you are in England, ask your GP for access to your records online. You are entitled to it and do not have to pay. They need to register you and at present you get what is called coded information which includes the results of blood tests. 98% of practices are enabled to provide this, but are not publicising it. If you look on the GP services bit of NHS choices and look at Online services that will give you the details. I have access to records from when I was born. Some practices do a more recent cutoff, but it means you do not have to rely on what the GP says and you can look things up before an appt and be prepared.

You may also like...