B12 results

[Sue1947]

Hi everyone ,i have just had my results from the Doctors ..B12 313 ref range 160 -980 .folate 6.1 ref range 3.0-17.Shaws advised me to start a new post to get more advise thanks everyone.

[Sue1947]

I should have asked on the above post should i start supplementing with those results .

could this be why i have tingling and sharp nerve pain in my legs and feet ,no taste and blurry eyes .Also what do i need to take with the B12

Hugs suE xx

[Treepie in reply to Sue1947]

I am experimenting with B12 amount and timing. I do not take with anything . I have more energy since taking it after having a level about the same as yours. Currently taking 2500iu a day sublingual when I go to bed.Have tried 5000 IU during the day but it made me queasy . I do not take with anything.My wife is using a spray which she prefers .She ran out recently and noticed increasing fatigue.

I think you have to experiment with increasing doses must be diminishing returns at some point as excess is excreted.

[Sue1947 in reply to Treepie]

Thankyou for your reply treepie,I have been taking jarrows 2 tablets at 1000 each but not felt any different yet ,i am phoning my endo tomorrow and will put this to her

Hugs sue xx

[greygoose in reply to Sue1947]

You need about 7000 daily to make a difference. I very much doubt if your endo would know! lol

Best to take with a good B complex, because the Bs all work together. But get one that has methylfolate rather than folic acid.

[Polaris in reply to Sue1947]

Hi Sue. Thyroid autoimmune disease and B12 deficiency are often interlinked and symptoms overlap. In many other European countries and Japan, your serum test results would be considered low and, together with the neurological symptoms (tingling in legs and feet, altered taste, difficulty walking, etc.) you already have, would be treated without delay. From the book, "Could it be B12?", here is an extract:

"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Ideally, it would be good to get extra tests done but it looks like you need injections without further delay, as detailed in the latest BCSH, NICE and UKNEQAS guidelines, to avoid possible irreversible neurological damage.

These sites gives further information and advice:

b12deficiency.info/sign...

b12d.org/b12-signs-symptoms-

bcshguidelines.com/document...

It might also be worth pointing out the latest BMJ research document to your GP, or the summary, if you don't think the whole document will be read:

cmim.org/pdf2014/funcion.ph...

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

I hope this helps you get the treatment you need. Very best wishes.

[Sue1947 in reply to Polaris]

Hi polaris ,thankyou for taking the time to reply .My doctor keeps telling me its cfs ,he has got it into his head that because i lost my husband and father in a week of one another 6 years ago and that i had to care for my husband for 25 years because he was left paralysed after an operation and that i put everything i had in me to care 24/7 and bring up 5 children then starting with hyperthyroid soon after, that i have now have time to think about my own health and in my own opinion that i am now seeking attention which is far from the truth.I will write down them sites you posted and ask him to look ,i have even lent him the book Could it be B12 would you believe .I know i can'go on like this its not good for my well being .Tomorrow i have to phone my Endo after changing from Armour to Erfra so will put it to her first

Hugs sue xx

[Polaris in reply to Sue1947]

Oh Sue, it's appalling that you have had to go through so much and now struggle to get treatment for yourself. My relative has Hashimoto's and severe B12 deficiency but was misdiagnosed with ME for years and then dementia. She made a remarkable recovery after B12 injections but we had such a battle to convince the surgery.

Hopefully, there will be a change as more surgeries become aware of latest research and guidelines - I will keep my fingers crossed that you will be heard. Good luck.

[Sue1947 in reply to Polaris]

Hi Polaris ,thanks for your support ,i think the only way i can get through to him is ask if he will write a letter to st Thomas hostipal .what to say to him is another matter ,what do i ask him to write ??.The only way i can think of is that i am going down to London to stop with friends whom live in Enfield is that any where near st thomas .I won't be going untill the end of May or early June .If i tell him i am willing to pay just to make sure one way or another as i don't want end up really ill if it is B12 def and it would put my mind at rest ..

hugs sue xx

[Polaris in reply to Sue1947]

I agree with Chancery that you should be treated without delay, even if you have to do your own injections, as "there is a critical window of opportunity before permanent cognitive changes or injury result".

The link below advises on writing to your GP. I personally feel that, if it is on record, they are possibly more likely to read the guidelines and treat, especially if you make particular reference to the evidence that there is no gold standard test and the risk of irreversible damage if delayed. We had a battle for my sister to be treated after a misdiagnosis of dementia and ME. It was only after writing, and emailing information, history, etc. as well as finally spelling out the catastrophic social consequences of not treating B12 def. that her GP finally agreed to trial it. It made an immediate dramatic difference.

b12deficiency.info/signs-an...

It must be very difficult Sue to have to do this when feeling ill - would it be possible to take someone with you next time to stress the seriousness of not

treating urgently?

[Sue1947 in reply to Polaris]

Thanks Polaris ,i will start putting a letter together with all the info you have given me and go from there ,i just hope he will listen ,if i sent an e-mail how do i get his e-mail address or does it just go to the surgery e-mail one,,..

I have the same tingling in my tongue and sometimes a bad itch type feeling as well as hands and arms they are not too painful though.It will take me ages to compose a letter ,i will start today

Thanks to you and chancery for all your help

hus sue xx

[Polaris in reply to Sue1947]

Hi Sue. Personally, I think, initially, it would be safer to write a letter so that it is on file. I don't want to be negative but be prepared to have no acknowledgement - they don't seem to follow the same rules of business as anyone else but at least it will be on record! I followed up by emailing the surgery the guidelines etc later but, again, had no acknowledgment!

I hope the templates in the B12deficiency link above will help. Good luck

[Chancery]

Your B12 is on the low side for a healthy individual. Mine's was 383 and I had already developed serious neurological problems, so yes, if you are having neuropathic problems you need treatment. I would advocate injections though, not oral medication. If you are having symptoms then the damage has already been done and it needs urgent repair. If you don't treat it with high loading doses the symptoms can become permanent. I'd recommend trying to get treatment from your doctor, but you'll have to argue it on the grounds of neuropathic damage being irreversible - you may need to arm yourself with NICE guidelines for that. Doctors can be profoundly ignorant on this subject. This is potentially very serious; I wouldn't recommend you ignore it or treat it with OTC vitamin supplements.

[Sue1947 in reply to Chancery]

Hi chancery,Thanks for your support ,are you on injections ?if so how did you get your Doctor to treat you .? thanks and hugs sue xx

[Chancery in reply to Sue1947]

Hi Sue. Yeah, I'm on injections. I had three weeks of loading doses, then I get monthly injections. I got my treatment on the strength of a LOT of argument. I prepared a dossier of material on neurological damage and how it should be treated. I also provided information on how the UK limits for healthy B12 are too low and that Japan, for example, treats anyone under 500. I compiled all my documents then wrote a letter arguing my case.

I was 'lucky' in that I was on expensive anti-convulsants, which have very bad side effects, so I also argued that B12 was cheap and had no side effects and I couldn't be damaged by it, so that helped.

You have to look at your situation and explain why you merit treatment. You should quote as many official documents as you can find to back you up, like the NICE guidelines etc, so that your doc knows you're not asking for anything unconventional or odd. At the end of the day you have to be a good salesman! If you are on any medication use the expense of that to argue the case, or if you have to have lots of doctor/hospital visits, or ANYTHING you can use for leverage.

Also if you can use your doctor's ego to help you, go for it. If he likes to help people, or sees himself as an open-minded doc, or whatever their particular foible is, make sure you sell your B12 treatment in such a way as will talk to that need in them. Try and read them and then use something you think will speak to them.

It's a bit of an art when you are arguing for something that is technically 'against the rules'! Just remember it shouldn't be, the UK guidelines ARE too low and many people are sick and being ignored. You are NOT asking for anything unreasonable here. Very best of luck!

[Sue1947 in reply to Chancery]

Thanks for the good advice Chancery ,.On monday i will write down all the good points you and polaris have wrote and the nice guidelines ,i once took them in when my B12 was low at 228 but Gp was not interested .Could i mention negligence if he doesnt treat me or is that going too far .. What symptoms did you get with B12 def ,at the moment my feet and legs feel as if i have sat on them for hours and just coming back to life with horrible sharp nerve pains ,i am unsteady when i walk ,my mouth is very dry and my memory is terrible ,i can't concentrate for long .I am just in the middle of changing medication from Armour to Erfra and was wondering if this was causing some of my problems ,but i have these symptoms for quite awhile

Thanks for your time

hugs sue xx

[Chancery in reply to Sue1947]

I wouldn't mention negligence, no. It's aggressive and will only make him defensive. You need to win him over; think of it as a seduction! You have to keep your eye firmly on the target here - and your target is to get treatment.

I've lost count of how often I've been in arguments with my doc and had to bite my tongue when I've really wanted to deliver a mighty smackdown, or throw something up at him when he's said something patently absurd. Those things might be great for winning a debate, but they are useless if you want to get someone on your side.

It hurts, but you've got to swallow your pride and wheedle what you want out of them!

My symptoms were singular: I actually had a recognised neurological condition, trigeminal neuralgia. Again, I was sort of 'lucky', in a bad way, that TN is rare and has no known cause (except a physical one which you can easily disprove so that weakens their position!) so I could argue that as I had developed a sudden serious demyelinating disease I needed aggressive and immediate treatment.

Oddly, although the treatment 'worked' (it sent the condition into remission) I kind of regret the determination I displayed getting it. If I had taken more time about it I would have actually had further testing first, for MMA and Homocysteine. By having treatment so fast I actually weakened my later position and lost valuable information. It would have been great to get those tests and know what my true B12 status was, then I wouldn't have to put up with debating whether I actually had a B12 deficiency EVERY time I see my doc. It gets very tiresome!

With your symptoms, your dead legs and shooting pains definitely sound B12 related, but dry mouth would be a thyroid/autoimmune issue (possibly Sjogren's if you also have dry eyes?) Bad memory and ataxia (unsteadiness) could be both. Quite possibly, with thyroid in the picture, you have knock-on B12 issues, from malabsorption, so it's not wholly unlikely you have some of both. Either way, the doctor needs to take it more seriously and not just fob you off. You can't fob off neurological damage and the NICE guidelines tell him so.