Received email from Denise re active B12 test

Hi

I have received an email back from Denise.

I asked how long I should be off the supplement before I could have the active B12 test, her reply was she did not know but said they can do the test anytime I wanted them too. I would rather have it when all the supplement is out of my system. I have not be using the Vit B12 spray now for a month, could anyone advise if this would now be O.K. to have the test, I think someone on here advised 2 months but I would rather have it soon if I can.

Many thanks browny

10 Replies

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  • High Browny

    I'm not totally sure about an answer either, whilst I may have a very good idea, I feel the best thing to do is for me to talk to the "A" Team. I will contact the Guy's team this morning for you and obtain there take on this. I will then post the reply for you.

    Best wishes.

  • Hi Browny,

    It's a tough one for you, But I would ask myself a few questions b4 going to the active B12 test .

    1. do you still feel symptoms on the supplements?

    2. If you stop supplements for a week , how much worse are you?

    Chances are That you'll still be deficient even on supplements as it is the injections that will make you feel a whole lot better .

    Have the active B12 test done. Here is the email address for dominic Harrington at GSTS he is the professor there.

    Ask him What you should do, He is a very helpful man and very knowledgable.

    dominic.harrington@gsts.com

    Good luck

    Joanne

  • Hi

    Many thanks for your reply, as you will see I have just replied to B12Turbo and said I feel the fatigue is getting worse and I feel more breathless so I feel the supplements may now be out of my system now. I am going to ring Denise today to order the test.

    Thankyou again and Very Best Wishes browny

  • Hi Browny

    As promised I have contacted Guy's Hospital and Dr. Dominic Harrington has provide me with the following information, which I feel is as accurate as it's possible to get, as each patient is different. Dominic official statement is as follows :-

    "We are unable to advise you on any alteration to your current treatment regime. The optimal time to assess status is just prior to your next scheduled B12 injection. If you are taking oral supplements please continue to do so but we ask that you let us know."

    So there you have it, straight from the top man. Browny, yours is a question which is often asked of Denise and I can assure everyone on this site, that Denise although very busy 48 hours a day and 10 days a week, does all she can to respond to one and all, A.S.A.P..

    Hope this helps and you get sorted out . Best wishes B12 Turbo

  • Hi

    I have just checked in and have seen both your replies, many many thanks for contacting

    Dr. Dominic Harrington, I really appreciate it. Yes I can understand how busy Denise is. I will ring her today to order the test, I do feel the supplement may be out of my system by now as the fatigue is getting worse, also I am feeling more breathless.

    Again thankyou for all your help.

    Very Best Wishes browny

  • That's good to know B12Turbo, thanks for getting that info. Browny, I think you should put on the form that you were supplementing, and the date you stopped, so they can take it into consideration just in case.

  • Thanks hampster1, yes I was going to do that, I just hope it gives a true picture of what's going on, I feel symptoms have come back this last week.

    Thanks again for your reply

    Best wishes browny

  • Hi Browny

    Always a pleasure to help any fellow sufferer and once again Hampster 1 gives excellent advice, just as I was about to say the same thing. Thanks Hampster, it's always good to hear from you, just in case one of us leaves something out, or simply doesn't think of an aspect in time, before someone else makes a regrettable move..

  • I supplemented with 1mg oral methylcobalamin for years. In May this year I almost died of undiagnosed B12d. My ACTIVE B12 was normal at 256. After two weeks treatment it rose to 2000. The measurements are meaningless now. The test is useful if your deficiency can be easily seen in your results. Sadly it's not always so. This is the big challenge for doctors... To realise the b12 test might tell them something about some people, but little or nothing about others. Have to go on symptoms and response to injections ie medical skills... Until we get accurate method of testing. Good luck.

  • Hi

    Many thanks for your reply, I have now received the info from Denise to take to my G.P. this week then hope to get referred for the Active B12 test.

    I will have to see what the result is before my next move. In May my serum B12 was 377, I then started supplement with 2400ug but then stopped last month as I decided I wanted the active test.

    In May my folate was low at 5.3 ferritin 88 and I am also hypothyroid.

    Hope you are now feeling well after your tough year.

    Best wishes browny

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