My B12 is 209...........

[briskate]

My B12 result is 209 (the range says 180.00-900). Am I likely to be able to get B12 injections from an NHS GP with this result if I ask or am I likely to have to go private?

Thank you!

[jillc39]

no no go to your gp. I only went private when I was desperate to get a b12 injection more frequently than my mean old gp agrees to.

[Boozybird]

Hi briskate, I am exactly in your situation (208) and my approach has been to go to the GP with the result and describe the symptoms. When he told me it was normal I told him I didn't feel normal and that in Japan the lower limit is 500. I also told him I had the large blood cells. I told him I had started supplementing myself and he offered me another blood test to see if it had made any difference to the b12 levels. I'm waiting for this result to come back. I don't feel any better after two weeks of supplementing and I'm a bit confused about the relationship between having high levels and it not being absorbed to be used in the cells so I'm trying to keep an open mind when I go back to see him... He also wanted me to have a chest X-ray - he said this was just for reference. Anyway, what I'm saying is that you can just say to him I have many symptoms that 'someone' suggested might be b12 and treating the symptoms may just be worth trying ( have you excluded thyroid?) best wishes 😜

[LtAngua52 in reply to Boozybird]

I think it's up to 500 in Germany too. I only mention it as it is a bit closer to home! I also told my GP as I thought it would sway him to accept my low b12 as deficiency as he has German relatives. It didn't!

[clivealive Forum Support]

Hi briskate your result will probably be marked as "normal" simply because it is within the range you quoted but I would say you are definitely in a "grey area".

Do you know why your B12 level is so low and what symptoms do you have?

For instance with your lifestyle:

Are you vegan or vegetarian?

Have you had stomach surgery (or any surgery/dental treatment using nitrous oxide)?

Are you type 2 diabetic on Metformin?

Do you take antacids or use Proton Pimp Inhibitors for high acid?

Are you on the contraceptive pill?

Do you take part in extreme sports or exercise rigorously?

Look at the following symptoms and "note" the main ones you have and present the list to your doctor:

1 Pernicious Anaemia - Symptoms

1.1 General Symptoms

The following general symptoms are common in those with PA:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 Abnormal yellow colouration of the skin (jaundice)

 Heightened sensitivity to hearing, smell, and taste

 Vision distortion, e.g. seeing stars, or double vision

 Breathlessness

 Headache

 Cankers (ulcers) in the mouth

 Sleep disorders

 Intolerance to loud sounds, flashing lights

 Intolerance to crowded malls (needing personal space)

 Tinnitus – ringing in ears

1.2 Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

1.3 Gastrointestinal Symptoms

The gastrointestinal symptoms of vitamin B12 deficiency may include:

 A sore tongue

 Appetite loss

 Diarrhoea and/or constipation

 Stomach pain

Hopefully the doctor will look at you and not just the computer screen.

I wish you well for the future.

[Foggyme Administrator]

Hi Briskate. Sorry I don't have time for a long reply, so briefly, as per all guidelines:

Your GP should treat your symptoms, not your blood results (your result is LOW, even it within the 'normal' range for UK (but not Japan and Germany, as others state).

It has been shown, in various medical studies, that Serum B12 blood test is not a reliable marker of B12 deficiency (i.e. It can falsely show high / higher levels).

The serum B12 test only shows how much B12 you have sloshing around in your body. It does not show how much is getting through to your cells, at an active level (that is, the level whereby the body can utilise the B12 effectively).

All guidelines state that where there is a discordance between blood results and symptoms, then treatment should be commenced, without delay. In your case, if your are indeed getting the symptoms of B12 deficiency, then treatment with B12 injections should begin immediately.

If you are getting neurological symptoms, you should have B12 injections every other day until no further improvement, in order to prevent irreversible neurological damage.

Your GP may want to test for PA or other autoimmune diseases (these often run hand in hand with B12 deficiency / PA. At lease, your B12 is LOW so he should want to investigate the reason for this.

You may have trouble persuading your GP to treat you but you should not have to go private!

If you click on my user name it will take you to my profile. The first post I wrote contains lots of information and guidelines sent to me by others (I'm new here too). It might be a good idea to trawl through them, look at the guidelines, and print off to take to your GP, as evidence. There's some really good stuff there and it helped me.

Unfortunately, the medical profession are not really very good at treating B12 deficiency, so you might need to be very persuasive.

Again...the most crucial thing here is that if you have symptoms of B12 deficiency, you should be treated with B12 injections.

Sorry, I have to dash (well, dash not quite the word, more like I have to slow go).

Good luck. Let us know how it goes...people here to help if needed.

[123harry]

hi just to say l am new to this also l had levels of 140 and absolutely no way would my doctor give me anything l am still deciding what to do as l have all the signs and symptoms iron deficiency seems to run along side low b12 so get your ferritin levels checked also most people in the uk are vit d deficient so get these checked and always ask for results normal to a gp may just be a point above the cut off point l would go private but its a 3 hour round trip for me as l live rural in Scotland l wish you well as you can probably see from all of us though the gps are never forth coming with treatment

[MariLiz]

It will depend on your GP, but if you have symptoms of deficiency you should be treated. Only 20% of what is in your blood will be available at cell level. Have a look at the Pernicious Anaemia Society website, I believe they can provide information leaflets for GP's if he is reluctant to treat you.

[briskate]

Thank you all for your help. I'm feeling lots more positive now. I'm considering self-injecting now instead of having to always visit my GP (If they even allowed me injections that is). In the past I had another illness that I had to self-inject for, so I am happy doing this.

However I will definitely be visiting my GP to talk about things. Meanwhile I have a few questions about self-injecting if any of you can help that would be brilliant.

1) I heard to use goldpharma.com to buy my injections. However there seem to be a few injectable B12 on this website. How do I know which one to buy?

2) How often do I inject?

3) Where about in the body do I inject?

4) Is it possible to over-dose - for example not having long enough between injections?

Thanks so much for your help! I will post this as a main question on here as well just in case my friends on this thread are unsure

[123harry]

go to the charity b12d.org its run by retired gp dr chandy they are a charity who would give you injectable b12 for free although they do ask for a donation if you can afford this they recommend medisave for needles etc l amin the same boat as you really l haven't yet self injected a bit fearful of doing so but have the injectable b12 from the charity to do so when lm brave enough l have been watching videos on you tube to find out how to do it a bit daunting though a you will probably see

[briskate]

Thanks harry! I actually saw this website. How long did they take to arrive after you ordered them from there? Thanks

[Foggyme Administrator in reply to briskate]

Hi 123harry and briskate. B12d.org do supply Methylcobalamin 1mg X 30mls and they do not ask people to pay, but make a donation, since they are aware that some people are desperate but cannot afford to pay.

However, I have recently become aware that the directors of the charity are paying thousands of pounds out of their own pockets, so that they can provide it to all who make a request.

As I am sure you can imagine, they are now having trouble meeting what is becoming a very high demand.

I get Methylcobalamin from them and the cost is (if I recall rightly - but it's on the website) £31 for 1mg X 30 ml bottle. Whenever I make a purchase, I always include extra to try and help with funding for those who cannot pay. This cost is extremely reasonable at at least half of what I can get it from elsewhere.

Please can I urge you to pay at the time of order, if you are able. But equally, don't be put off ordering if this is a problem for you (I know it is for a lot of people).

They buy their stocks from America and due to a large increase in orders, there is sometimes quite a delay between order and dispatch (Iwaited four weeks for my last lot).

I think that ideally, they would like to build up a good customer base so that they can drive costs down by increasing their orders and by doing bulk buying. And of course, this will only be possible if sufficient people are able to pay at the point of order.

All work at the charity is voluntary. In fact, funding the cost of the B12 means that they actually pay to volunteer! They really do 'go the extra mile' and have helped many people. I say this by way of an apology for 'banging-on' about costs!

Brisket, I'm clean out of energy but will reply to your post re: supplies of B12 and syringes tomorrow. Will let you know what brands I buy so may be a little easier to spot what you want.

Best wishes to both.

P.s. Considering putting this as a seperate post to try and help b12.org in their aim to supply as many people as possible. (I think the 'message' out there may be that they simply give it away). What do you think? Would appreciate your input. Thanks.

[Jose651 in reply to Foggyme]

I agree Fm and have done the same as you many times.

You can also set up a Direct Debit for as little, or as much that you can afford per month.

I fear they may not be able to keep going if funds don't improve.

Is there any way we could start fund raising for them? They help so many people who otherwise, through lack of getting B12, would continue to be very ill indeed.

J

😊

[Foggyme Administrator in reply to Jose651]

Hi Jose651. PM'd you about this.

[123harry in reply to Foggyme]

I usually also pay for my b12 and add a bit on to help others but l do think it could be thought of as you get it free there was something on a facebook page asking for donations as they eere low on funds and they said it was because of the raised awareness of it now which is good not sure how to go about raisingore awareness or money

[Foggyme Administrator in reply to 123harry]

Hi harry123. Yes, I think the message getting out is that it's free! I've emailed Hugo to ask if he wants me to put a post up for the closed PAS community and am waiting for a response (don't want to 'hijack' whatever they want their message to be). Also asked him about fund raising and how high profile (or not) they want to be. Will let you (and Jose 651) know when I hear from him.

It would be truly awful if people remained I'll because they couldn't fund their own B12. Another NHS disgrace.

[123harry in reply to briskate]

About 3 weeks i think

[briskate]

I am more than happy to donate to B12d.org or even buy the injections from them. I just need to find somewhere that's safe to buy them from. I've had another couple of websites recommended to me but when I go to them there are lots of B12 injections and I have no idea which exact ones to buy! I'm a bit lost. I'm trying to sort this as soon as possible as I'm on sick leave from work as I've been so unwell and worried they won't hold my job open much longer.

I'd really appreciate it if someone could tell me which exact ones I need to buy as i'm new to this?

Thanks so much

[fbirder in reply to briskate]

First step should be to get you doctor to prescribe the jabs for you. Only if that fails, or you don't get jabbed frequently enough, should you move on to self injection.

There's no need to use methylcobalamin for the vast majority of the population. The stuff you get from the doctor, hydroxocobalamin, should be perfectly fine.

I get mine from an online pharmacist in Germany who have a website that is partly English.

The stuff from the doctor is 1 mg/ml in 1 ml ampoules - like this versandapo.de/article/detai...

I prefer the 1.5 mg/ml ampoules like this - versandapo.de/article/searc...

[fbirder in reply to fbirder]

Needles and syringes you can get from Amazon -

Green needles to draw the solution up into the syringe - amazon.co.uk/Sterile-Single...

Blue needles for the actual injection - amazon.co.uk/Sterile-Single...

2ml syringes - amazon.co.uk/2ML-PLASTIPAK-...

[Foggyme Administrator in reply to briskate]

Another source for vitamin B12 injections is mycare.de. I buy Hydroxocobalamin (Vitamin B12 Depot Roxmedica). You can get it in 10 X 1ml or 100 X 1ml. Delivery is quick and I've never had any problems with them.

Two other sources for syringes, needles, alcohol wipes and sharps box are medisave.co.uk or exchangesupplies.org (I see Fbirder has already given you needles sizes).

Hope this helps.

[briskate]

Thanks so much for all your help everyone. Very useful information

fbirder I have private messaged you. Thanks

[briskate]

Well I had my first self- injection yesterday. However I didn't sleep a wink all night - is this a side effect or just a co-incidence?!

Also I'm a bit worried as it's still hurting even now! I've done self-injections before and they never hurt like this. Bit worried - I know a subcutaneous injection is meant just to go into the fat but what would happen if I injected too deep into the muscle in the stomach instead by accident?

Thanks