New guidelines

There appears there are still a lot of Gps who still are not aware of the new guidelines.

I was back at docs tonight as after loading dose which feeling a lot better off and has certainly reduced my neurological symptons however tingling fingers and balance are still present in a milder form. I queried my neurology refferal and how told one min getting one and then now saying is there a need!?! Yes the chances are I don't as I do believe that all the probs experienced mainly the last 10 months are b12 related but how can they on one hand say your b12 is fine

So neuro and then next min not.

Today I have been told that my serum b12 at 236 had been fine. I explained this was low and due to active test etc. I explained new guidelines for how to treat to be told well I don't think this is the issue as its been perfectly in range. However a blood test will determined if u need maintenance injecrions. They then said that's if lab will do as they don't normally check b12 on someone who's b12 had been fine. What!!!

45 Replies

  • The BCSH clearly state serum levels are not required after starting B12 so these should not be used to determine future treatment. Future treatment is based on clinical response in their algorithm. BMJ article also clearly advises that serum B12 is not definitive. NEQAS alert also shows B12 deficiency can occur at "normal" levels. There appears to be a misunderstanding of reference ranges. They are not definitive "normal" ranges.

  • Yeah that was what I was trying to explain. Just feel like I'm hitting a brick wall. The point I was trying to make to the doc is that I'd they adamant it can't be b12 then listen to haemo who recommended a neuro referral. Just seems like they contradict themselves

  • Very frustrating. Try taking someone with you to see GP. That helped me.

  • I have took my husband with Me the last few times, don't think the docs like it. The doctor today even played the card of could my prob be anxiety like shallow breathing etc. I just said no I dont feel depressed that I have a family history of this

  • Ive said over and over that they still think it is a blood condition. and that is why they do what they do and that is why the guidelines are as complicated as they are.

    No one will get anywhere until doctors start to understand that the DNA dysfunction comes first and the serum b12 is no use for identifying any neuro damage either before or after treatment.

  • Yeah totally agree Poppet. I think in my future treatment may have to treat myself as u right they think blood condition.

  • I have a link to guidelines but there is no date on them so don't know if they are the latest

  • BCSH guidelines were released this Summer so they are up to date

  • Yeah just wish there were not doctors that looked at them. As u say all they do is look at serum b12 etc and then say well it's not that low so can't see why u got these symptoms. I paid for active tests and most doctors then say never heard of them. Has anyone heard of Dr R as was

    Once mentioned to me from

    Someone on here but can't remember when

  • Last I heard he was ill - only a couple of weeks ago on here somewhere.

  • Ah bless him. Hope he ok

  • Ah bless him. Hope he ok

  • I get methyl cobalamin from dr r, I have hit a brick wall with my Dr, think it will b a very long time b4 any thing changes, look after yourself and source it from other countries or try 2 get appmnt with him when he's feeling better. Last time I saw my Dr was about 6 months ago, I got upset as she was not listening to anything I said, her answer was to put 2 sheets of paper in front of me to test 4 anxiety and depression, I have not been back!! I'm trying to educate my family into bein tested as my daughter as PA 2 n Evan they look at me as if I've lost my marbles, it's a lonely place to be in, so thank god for these sites.

  • Hi Jcwg,

    I feel that maybe is what I will have to do. I thought the anxiety card might of been coming surprised I had not had it earlier. What I keep trying to get through to the docs that I have felt better after loading dose people have commented on how much better I look and seem etc plus balance issues have eased. How did u get in touch with Dr R and where is he based?

  • Hi Leanneta, I was given his name and details by Martin Hooper When I phoned him at the Pernicious Anaemia Society, he lives in South Wales.

  • Just out of interest when was the last time you were in touch with the Dr? I ask because someone was on here a couple of weeks ago saying that he had been in hospital for some time and they couldn't get the methyl.

  • Thanks will maybe give them a ring next week

  • Hi Poppet11, I phoned him on Monday the 6th October, he didn't answer his landline, sometimes he doesn't if he has a patient in, so I phoned his mobile, his wife answered, I ordered it with her and it the Methyl arrived the following morning. She seemed fine and didn't say he hadn't been well. I wish him a speedy recovery if he has been I'll, both Dr R and his wife are luvly people.

  • Thanks for that. It brings everyone up to speed.

  • Leanneta, if you do get Methyl from him, please monitor your iron, folic acid, potassium,etc. I take supplements and look like a monkey ( that'll b the bananas-potassium). I'm not very good at explaining why but there are many on here that really know what they are talking about. Good luck.

  • Hi Jcwg,

    Yeah I will do. When took loading doses I started taking a multi vitamin. My ferritin was then 27 so started on iron too. I have not got a clue about my pottasium level but do eat lots of bananas too lol. Thanks for the help

  • Just another question here. How many of you suffer with thyroid probs too. My tsh is at 2.75 and has been over range once. Does a b12 deficiency affect thyroid or is it the other way round. Never had t3 etc checked

  • It's actually a very good question - Does a b12 deficiency affect thyroid or it is the other way round. Most people think that they are simply linked in some way ie you have one you will have the other.

    Again the problem here is that most people believe that once serum b12 levels are into the normal range the functional deficiency is also treated. Yet it is highly unlikely that in the majority of cases it is.

    I had a TSH of 1 when I had my deficiency. Without going to look at the paperwork I think it went up to around 4 without any treatment (for thyroid)

    The most sensible explanation I ever heard was this 'the thyroid is a balancing mechanism therefore the presumption would be that a b12 deficiency or imbalance would cause the thyroid to try to balance the problem.'

    Of course we will, currently, never know because people are having too little b12 treatment (neither is the cause being investigated in most cases) but when their serum levels are normal and their thyroid is still out of range, they then take thyroid meds to try and regulate it.

  • It's all mind boggling isn't it. My tsh been 2.75 whilst untreated b12 so will be interesting to see what is after injecrions. Are u currently on meds for thyroid poppet?

  • No, I'm not on thyroid meds. While my b12 was untreated it was 0.7. Shortly after commencing treatment it went up to 1. Four months later I think it was 4.

    Even the consultant who saw me when it was 1 said he wouldn't commence thyroid treatment because he wanted to see what happened after taking b12.

    You have to remember though that I've self medicated with b12 from the very start - I was never on the NHS protocol.

  • In fact a similar thing happened with D3. In my case it was the first thing picked up (a year before the b12 deficiency). It was 19. With treatment I think it went up to 110 (ish) but that was with large doses - and my condition worsened. Without d3 treatment and with b12 it fell again but only to 54. Within range. And that was over 9 months after I'd stopped taking d3.

    I'm not saying here that b12 is the Holy Grail. But I think it is the starting point to putting things right. And if we don't put that right, if we only put the blood test right, then I for one will never advocate to anyone to go on other meds. I believe the most important thing, at least at the start, is to truly understand b12 deficiency. Then look at the cause.

  • Did u have to find your consultant privately. I know u might have mentioned this before but was having to self Medicate was this because doc did not believe your symotoms were due to b12?

  • I sorted it all out on my own really, although I initially bought b12 from the net. It was a complicated situation in my case. My doctor messed up, then refused loading doses and then tried to put me on 50mcgs a day.

    It was never going to happen.

  • Sounds like you have had a pretty horrendous time. It's so maddening and opens my eyes more and more to the stuff going on around Us. I think I will be doing the same as got a loading dose but don't feel had enough then get told ah u are not low so don't feel need them even tho I feel better for having some. Loads of mixed messages eh

  • It has been of nightmare proportions and continues to be so. I have, since the first day I walked into a doctors been told by everyone who knows about it, that I simply need to work harder. And many of them have only been too pleased to supply the work.

    I have never yet had anyone ask me how I am or what happened. I've never seen any genuine interest.

    I have, however, been patronised to the point where you would have thought I was suffering from severe mental retardation.

    How I think of all those involved?

    In the words of Adam Ant - An 18th Century brain in a 21st century head.

    Dumbos the lot of 'em.

  • I had a prob with d3 too, at the beginning all doc kept saying was take a over counter supplement and get plenty sun. Joke. They failed to tell me that my b12 was 150 at that point just said all was normal even tho ferritin was only 15

  • Many people with b12d have problems with d3. All I can go on is what happened to me and how it worked for me. Let's face facts here though, if I'd have let doctors have their way I would be on: thyroid meds, 50mcg oral b12 day, 5mg of folic acid, D3, and statins for my 'raised' cholesterol.

    And not one of those would have helped me and most would have caused further harm.

  • I had a prob with d3 too, at the beginning all doc kept saying was take a over counter supplement and get plenty sun. Joke. They failed to tell me that my b12 was 150 at that point just said all was normal even tho ferritin was only 15

  • Hi, I've been reading your comments about thyroid problems, I started loading doses of B12 in Feb 2013, in April 2013 I asked for a copy of my blood results, my T4 was 13.3, my TSH was 7.18, I looked into this and was convinced I was hypothyroid, my Dr didn't agree, I was given an infusion of Methylcobalamin late April, and also gave myself Methyl nearly every day for at least 6months. I have Ankylosing Spondylitis and in November 2013 I asked my Rheumatology nurse to test again, my TSH was 3.05. Am I understating correctly that the TSH would be lower due to be taking b12. Thank you

  • I don't know whether the ranges for TSH are standardised. In my case my TSH was low and then it went higher into the normal range. If your ranges are the same then yours was high and then went into the normal range.

    As I say I am completely unsure. I don't focus on thyroid because mine reverted to normal.

  • TSH ranges usually vary lab by lab. Sometimes the differences are very slight.

    I'd be suspicious if all labs in, say, a country had the same range. It would tend to suggest someone had imposed a country-wide range.

    Interpretation of a TSH value varies considerably around the world.

    I wouldn't be happy with my TSH over 3. I started to notice issues with it around 2! Over 7 is definitely in hypothyroid territory (unless there is another explanation).

    On Thyroid UK we do not see people posting that their TSH falls as they take B12 but not many have infusions.


  • You've confused me with that posting Rod.

    You say you wouldn't be happy with it over 3 and you notice issues around 2. That means only 3 is good?

  • What I meant was that when first tested mine was about 2 and I had started to get symptoms. Finally got diagnosed at 5. Feel well now it is near 1. If it rose to 2 or 3 I would certainly notice it. Indeed I have found that if symptoms have returned my TSH will have risen.

  • Okay, so what are the normal ranges relative to the test you have?

  • ... and just to add - wouldn't the ranges (or the happy medium) depend on whether you started off with or were symptomatic of hypo or hyper thyroid?

    Okay, I've got it - we are coming from different ends of the spectrum.

    I was suspected of having hyperthyroid and you of hypo ?

    I was near the bottom end 0.7 when I was ill and it rose with b12. You were near the top end and it goes down when you are feeling better?

  • I know when I was tested the tsh range was 0.30 to 4.50 and I was 2.75. apparently I was over the range once before but never notified and never had t3 etc checked. When I was at haematology she questioned thyroid probs with b12. I know one of my friends came back same kind of level and her doctors checked t4 and saw a Prob. Suppose it depends on the doctor u see

  • I would think it depends on your symptoms as well.

    I know someone who was hyper and had her thyroid removed and then they couldn't regulate her hypo. She has goiter etc now.

  • Sorry, what is D3?

  • One form of vitamin D - probably the best form for most of us to take:


  • Hi BrecklandRanger, d3 is vitamin D

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