Making headway...vitamin B12

[bestbuddy]

I managed to speak with my GP last week regarding my low level of vitamin B12 in the light of all my auto immune problems but in particular my under-active thyroid. My level was about 280 and the lab range was 225-1100 or there about.

My GP began by flatly saying my levels were 'within normal range'. However, I pointed out that I have the above condition, have coeliac disease, a diagnosis of UCTD and my grandma had pernicious anaemia! SURELY THIS SHOULD BE INVESTIGATED in the light of my being so unwell?

Thanks to this fantastic site and the links to the vitb12 deficiency site, I was able to print out a treatment protocol and a symptom list which I had pre filled in before the appointment for those in the supposed normal range but with extra stress because of auto immunity.

The doctor certainly sat up and took notice and was interested in my research.

Being pro active, and after telling her I have purchased a product, she has endorsed my taking a sublingual vitamin B12 spray (1200mcg) daily on top of my vitamin D3 and magnesium as a therapeutic trial instead of injections.

What are your thoughts good people? How soon will I start to notice an improvement or am I expecting too much too soon? I would appreciate any thoughts.

[alangardner]

hi there bestbuddy , great news that your gp actually listened to you with your research/evidence and is going forward ......please make sure you do the same thing [ research/evidence ] and have it to hand on other matters ---- always remember your gp is A GENERAL PRACTICTIONER and may not specialise in your specific problem ---and if you have a reciprocal relationship with them and you both respect each others view BOTH of you will benefit and you will be able to tolerate whatsoever will happen in the future [ after all no one knows whats going to hit us when we wake up 2morrow ] .....so happy to think that you have a good gp -- as indeed I have --- and I could not agree with you more about this site ====== nothing short of brilliant and helpful [ my personal opinion ] --- [ and many others methinks ] and so so so informative ....LoL alan xx

[Marz]

....good news ! As you have coeliac issues I wondered if you have considered having the ACTIVE B12 test done as I believe that is more accurate. Hampster1 is a wealth of information on B12 and PA.... Your GP probably does not realise that B12 works at a cellular level - so what is in the blood is sometimes bound and not available for the cells....I believe the amount available it is an incredibly small amount percentage wise....

I have just ordered the patches - which they will not send to Greece ! I do not have a terminal ileum where lots of B12 is absorbed - I thought I would see if I could improve things. Hampster1's video of Professor Smith's presentation at the PAS conference had me reaching for more B12 ! A video that should be sent to every doctor in the land !

I hope your post will be an inspiration to others when dealing with their GP's - am sure it will......

[Hidden in reply to Marz]

I'm so pleased someone watched that video! Incredible to see really respected UK researchers coming through with these incredible study results on the importance of these B vitamins, something that, up until now, only the sufferers seem to have known or cared about. I'll link it again in case anyone else wants to see it, its about the importance of B12 for preventing alzheimer's/dementia. His presentation starts at about 4 minutes in:

youtube.com/watch?v=n7aMPF5...(Not working as expected?)

[Marz in reply to Hidden]

Hopefully everyone did watch but forgot to acknowledge. If they didn't then they should ! I appreciate your input and will be sending you a PM when I get around to it - re tests !

[bestbuddy in reply to Marz]

I asked my GP for the active B12 test but she said the NHS would not fund this. I will see how I get on with the sublingual spray. She has asked me to have a re-test of serum b12 in 3 months to see if there is any improvement. If not I will take up the advice of travelling to st Thomas' or send my blood results off. Thanks for all advice and comments, I wait expectantly!

[Hidden]

Well done for standing your ground bestbuddy, hopefully one more GP educated in diagnosing and treating low B12.

Just a little advice - keep a symptom diary for any signs of improvement, and bear in mind you can feel worse before you feel better. Get your folate and ferritin levels checked, folate needs to be top end of the range, and ferritin at least 80, to make use of any B12 you take. Also take a good B-Complex to ensure the other Bs don't get out of balance. It is common to need a permanent folic acid or active folate supplement when taking B12, I stopped taking my 5mg folic acid and got deficiency symptoms again within a month, even though I had 400mcg active folate in my B-complex. Eat lots of potassium and magnesium rich foods.

Most important - sublingual B12 does not work for everyone, injections are considered better at correcting a deficiency. Some people do better on hydroxoB12, some on methylB12, and others prefer cyanoB12, we are all different and trial and error is the name of the game. So if the spray makes no difference, you really need to be pushing your GP for a trial of hydroxoB12 injections.

In fact as Marz has said, you might want to consider having the Active B12 test before you use that spray, since your doctor is on board they can refer you to St Thomas' (£18 for the test with a GP referral, if you can't get there you can post the sample):

thyroiduk.org.uk/tuk/testin...

H x

[Flowers2]

Hi Best Buddy

What were your B12 symptoms? My levels are the same as yours and GP just says it's within normal range so no treatment necessary. My Great Grandma had pernicious anaemia and despite me taking sublingual. B12 for a year my levels have not changed. I don't know what to do next. Btw my ferritin was low but I've been on ferrous fumerate for several months so should be ok there now.

Pls let me know your B12 symptoms.

Thanks x

[Hidden in reply to Flowers2]

Hi Alit, you're a good example of the sublinguals not working for everyone. You could come over to the PA Facebook page and post your results and symptoms if you want? Link here:

facebook.com/groups/1749289...

And info about the other tests you could have is here:

b12deficiency.info/testing....

Also on that website lots of other good info and links.

You could also try giving your GP Dr Chandy's treatment protocol with the symptom questionaire filled in, and ask your GP for a trial of B12 injections:

b12d.org/sites/default/file...

b12d.org/b12-signs-symptoms...

Family history of PA is really important and GPs so frequently dismiss it. I would try and push this angle to get the GP to do the antibody tests - anti-intrinsic factor, anti-parietal cells. If you have ATD already then even more likely you also have PA.

Hampster

[bestbuddy in reply to Flowers2]

Hi Alit,

my symptoms have been on going for years and any of them could be related to either my under active thyroid, the coeliac disease or my UCTD (latent lupus) and my grandma having pernicious anaemia when she was alive. So, I am not sure if I could isolate any of them and say it is B12 deficiency only.

I will state again, my GP said my lab results were fine, it's through this site and because of my on going symptoms that I found out that my blood vitamin b12 should ideally be over 500.

Weariness / lethargy

cramping

headaches

disturbed sleep

anxiety

thirst

blurred vision

dizziness

tinnitus (since childhood)

difficulty swallowing

myxodema

palpitations

metallic taste / odd taste

joint inflammation / pain

dry skin brittle nails

the list could go on. Print off the protocol for excluding B12 deficiency (side bar on the b12 deficiency web site) and fill in and take to your doctor. I am not suggesting that it will be a cure all for me, but I am really hoping the sublingual spray will help.

How soon? here's hoping not too long until I see an improvement.

[Nytsom in reply to bestbuddy]

Me too !! All the above and more I could add to your list.

[Nytsom]

We live and learn! GP Surgeries Eh; Trying to get past the Reception Desk at our Surgery can be difficult; and when you do eventually get an appointment to see a GP, you get the "you need tests" before we can proceed; OK I've been having tests for a month.

My B12 is 136. But I have a problem with seeing the same doctor at my surgery! I've seen four different doctors about this problem. Was told I'd need to go on injections for B12D by one GP only last week; He asked me to have (yet) another blood test. This morning I attended the surgery and was seen by another GP; and would you believe it, He was the one GP (Doctor) I didn't wan't to see! He seems to think that VitB12 of 136 in the blood is low But not that low; and although I have all the symptoms of Pernicious anaemia, he refused to start me on any kind of medication. He has referred me to the Rheumatology Dept at the Hospital. I was diagnosed with Arthritis many years ago. The latest blood test shows no alteration in the B12. of 136. but he mentioned something in the blood test about Plasma, also said I have sticky blood, no idea what that's about? I'm also Iron deficient and the normal blood count is on 10, which is also low.

It looks like I'm going to suffer a bit longer with this illness before getting any treatment for B12 Deficiency; even though two GP's and the Nurse seem to think that a B12 count as low as 136, requires medical attention.

I'm annoyed with my GP Surgery .. I've not bothered them for the past 5/6 years! I dislike going to the surgery that much, I normally try to overcome any illness without troubling them; but now with this illness, I need some help. I really do feel ill; and there's no improvement as time passes.