B12 levels

[salsadancer]

I have had P.A for over 2 and a half years. I am on b12 injections every 8 weeks as I felt my body needed it. My G.P agreeded to me having it. I started with every 3 months, but found that I needed it sooner. I went to my G.P 2 weeks ago, saw a different doctor, asked her for a prescription for my B12, as i was running out. She said my levels were high and looked at the results of my blood test that I had around 6 months ago and said "I shouldn't been taking it now, as my results were fine". Even though she was reluctant to give me a prescription, she still wrote me one for 6 injections and said she will look into it. am now confused, as I was told by my doctor that I would have to have injections life long. I find my symptoms start around a week before I injection is due. I was put on 8 weeks instead of 12 weeks because I was passing out around the 10th week before I injection was due. I was a bit worried when the doctor told me that I didn't need my injection as my levels were now high. But because I have pernicious anemia I was told by my G.P that I have to take it continuous regardless to what my levels are, and that the body stores it in the liver, the body will take it when it is needed. What do I do now? Do I wait and get my levels checked every so often to check where the levels are or do I keep having the injections. I am scared incase my levels drop really low; when I was first diagnosed my level were 151 which was very low and working.

[PAS_B12iom]

I've been having the same experience, as have many other sufferers of PA, because GP's & nurses are trained to only look at levels of B12 in the bloodstream rather than neuropathic symptoms. Sadly regarding on levels in the bloodstream is not an accurate enough process because although it maybe in the blood, because it's an autoimmune condition, it doesn't always mean it's being absorbed by everything in your body that needs it.

In order to fully assess someone's ability to absorb B12, there needs to be about 4 different types of tests done, although most gps will dispute this because they are scared of opening a can of worms. You are far from alone in this, but my advice to you, and everyone else who has PA, is to go down the road of self injecting. It's perfectly legal, is impossible to overdose and you are not required to inform your Dr.

There are a few different types available and although they are all safe to use, it seems you have to find the one that works best for you.

I use cyanocabalamin and that works for me. You also have mythlcabalamin, hydroxocabalamin. Mythlcabalamin is the easiest type for your body to absorb but it's also the most expensive type to buy.

I order my cyanocabalamin from goldpharma.com

[salsadancer in reply to PAS_B12iom]

Thank you for your reply pas. It is helpful, however I don't think I could self inject myself, as I can't stand needles. Was not aware that there were different types of B12 so thank you for your information, much appreciated.

[Hidden in reply to salsadancer]

Re :"I can't stand needles", a lot of us were like that, things change when its the B12 that gives you your life back.

[bowlerc67 in reply to PAS_B12iom]

I've tried looking on that site none of the items you mentioned have shown up"?????????????

[Hidden]

Hi salsadancer,

Once diagnosed with PA/B12 def then treatment is for life. It is only logical your serum B12 weould be high now you are getting treatment, and it is absolutely un necessary to stop treatment just to see if you will become deficient again. Unfortunately there are more Drs that seem to like to take patients off treatment to see what happens. Do not accept a you do not need any more B12, if necessary get a second opinion, and or referral to a haematologist.

Perhaps read this new guidance, and give copy to Dr if necessary, see:

bcshguidelines.com/document...

"Recommendations

 Patients suspected of having pernicious anaemia should be tested for intrinsic factor antibody. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).

 Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response. (Grade 2A)"

If all fails and you are being taken off treatment then you have other options should you wish to take things in your own hands. To much B12 does no known harm, to little B12 does a lot of known harm. It costs very little, there is very little to be gained taking some one off B12 treatment and a lot of damage can be done if treatment is not adequate.

I hope this helps,

Kind regards,

Marre.

[salsadancer in reply to Hidden]

Thank you for your reply Marie, and Web address shall look onto it. Your reply had be very helpful, much appreciated.

[Gambit62 Administrator]

Really sorry that you are facing the battle against ignorance.

If you have a B12 deficiency then that will be because your body isn't able to absorb it properly.

Recycling B12 via the liver relies upon the same absorption mechanism as getting B12 from your diet so that isn't going to be working properly either.

B12 shots are definitely for life unless it is proven that the deficiency was down to lack of B12 in your diet.

There are no known undesirable effects from having high B12 levels so using high levels of B12 as a justification for stopping inections - given that serum B12 is known to be a poor guide as to how well your body is metabolising B12 - is just poor medicine - though unfortunately that doesn't seem to be rare.

NICE guidelines state that there isn't generally any point in monitoring levels after initial checks during starting treatment - basically high levels aren't a problem but low levels are - a huge problem

cks.nice.org.uk/anaemia-b12...

[salsadancer]

Thank you Gambits62 for your reply. I was told by my G.P when I was first diagnosed with Pernicious anemia B12 deficiency that I would be on life long injections, that my B12 has nothing to do with my diet, my body cannot absorb it properly. I will get advice from another doctor and see what they tell me. I thought that high levels wasn't a problem but was not too sure. I know being low on b12 can cause big problems. I will insist on having my injection every 8 weeks as my body needs it. Quite often I get tingling feeling in my hands, and a week before my injection is due, I am struggling with feeling very lethargy and finding it hard up cope with. Thank you for your link will be looking into it.

[Penni]

Like you I was also told that I no longer needed my b12 injections after having them for almost 2 years. I wish now that I had fought harder and not stopped my injections. I was fine for a while but then I started too get sick. My GP at the time tested my blood but said I didn't need my b12 injections but I continued too get sick until I became so ill that I nearly died. I spent a horrifc 5 weeks in my local hospital and was diganosed with very low b12 levels, a sever UTI and malnutrition. All of which could have been prevented if I had continued with my b12 injections. In the end I had 9 b12 injections, 8 multi vitamin infusions. 3 liters of fluid, enough pills a day to make me rattle (between 8 and 10 pills 4 times a day) and had too have my digestive system restarted.

I have now been left with permenant nerve damage too my hands and feet as well as a curve in my spine caused my years of low b12. My hair was falling out in chunks, I kept blowing my IV lines til the only vein that was good enough was in my foot. I could walk when I went into hospital and by the time I left I couldn't even stand up by myself without using a walking frame. I have had to have my bed moved downstairs and couldn't use my bathroom for almost 6 months and I couldn't get up my stairs too reach it. It has taken several months but I can now walk short distances without using my frame or sticks but I am now on a fentanyl patch for the pain which in itself causes problems.

The nerve damage in my hands has caused me alot of problems such as I can no longer use a tin opener, have trouble opening cans with ring pulls and drop things (alot). I find it difficult too hold a book and become very fustrated when I try and do my craft hobbies as it takes me so much longer too do things than before. As for my feet I have limited feeling in both feet and very poor circulation too the point my feet go blue if they get cold and it takes a long time too warm them up again.

I now give myself by b12 injection once a month and my current GP and the district nurses are more than happy for me to do this but I can phone them if I need help at any time.

[Hidden in reply to Penni]

Hi Penni,

What a terribly path you have had, I am very sorry to read what a lack of B12 has done to you. Very good for others to read, to read how much can go wrong if you do not get a harmless B12 jab.

Kind regards,

Marre.

[salsadancer in reply to Penni]

So sorry to hear your problems due to you stopping your b12. That makes me really sad. Thank you for sharing your problems with me. I did not know how serious this could get through not having the b12 injection. I will make sure that my GP continues to give it to me every 8 weeks. Thank you so much again for sharing your information with me. I wish you well in the future.

[p101]

Are you levels checked at least 2 weeks after your last injection? It's weird because I too have normal bloods. And only found out about my b12 deficiency because I was so unwell with neuro symptoms they decided to check it (as not on routine check) cause of my research since then I also got them to check my vitamin D - which is also low. I had my b12 levels checked (because I was considering self supplementing and was still feeling bad despite some improvements) but found my levels to have gone from 183 to 1800. I have gastritis and had stomach investigated - came back inconclusive for coeliac (had some signs of auto immune but couldn't say which for sure) so I have gone gluten free anyway. Day 21 and I am not quite there totally but I'm like a different person to a few weeks ago! It might not be the answer for you but I could have just assumed I wasn't getting enough b12 and supplemented and missed the bigger picture x

[p101 in reply to p101]

I should say I still get b12 every 3 months

[salsadancer in reply to p101]

Thank you for your reply. No my G.P. say they only check it once a year, to see where your levels are at. Over the 2 years it has taken for my levels to go from 151 - 2000 that's why the Doctor I last saw said that I should not be having more b12 injections, was reluctant to give me another prescription. But she gave it to me and said she will look into it. But I know my body needs it regardless to what the doctor said. I have be having my injection every 8 weeks and will continue to do so. We all understand our own body and knows what is good for us. I wish you well.

[bowlerc67]

You should have them for life OMG these Drs haven't got a clue, tell them to refer to there BMF....... It should go on symptoms not levels!!!!!! PA is a lifelong illness there is no cure I've had it since 6 yrs still trying to get injections.... I can hardly move or breathe