Vitamin B12 Deficiency

Lemon21

Hi

Im new here so hopefully im putting this in the right place...

Iv been suffering from Vitamin B12 Deficiency for about 8 years now though only diagnosed 3 years ago.

Iv had a range of symptoms from palpatations, unable to catch a ctreath, extreme fatigue, headaches, pins and needles and aches and pains in hands, arms and legs, forgetfullness , poor concentration, mood swings, not sleeping properly, really pale with dark circles under eyes and the list goes on.

My GP took a long time to diagnose this and when did my levels were below 100 and just told me to look on internet. i have been getting B12 injections since May 2009 but my symptoms seem to be gettign worse and my GP doesnt seem to think its as serious as i feel it is. They say I am allowed ot inject myself and charge me €20 an injection and iv to pay an extra 50 if i want a discussion even though im there every 2nd week.

What im looking for is some advice on what i should do next, should i change GP. Does anyone know a doctor who is well educated in this?
I should add this isnt diet related but apart form that my GP hasnt made an effort to find out why i have it, the only action has been blood tests.

Any help would be great.

Thanks

LegacyUser

Your GP sounds like an idiot to be honest. In fairness to him it can be hard to diagnose this problem, as I think they don't pick up some cases until they are quite extreme (I spoke to a biochemist about this years ago). But I am fairly sure it should be considered as a serious health issue as a deficiency has a negative effect on the nervous system, and as the symptoms are bad and probably quite disruptive for you they should be taken seriously anyway.

You might be better off learning to self-inject for convenience and to save you money, but if you feel you are not being taken seriously I would be inclined to move to another GP (or maybe see another GP within the same practice?). I once moved from a rubbish to a good GP and it made such a difference.

I wonder if you could plead your case to the medical card people to get a doctor-only card at least (if these still exist)?

A referral to a consultant might be worth considering as well but I don't know whether that should be a neurologist, endochrinologist, general Consultant physician, or which type of consultant would be the best. Personally I think it is odd that you are getting worse after 3 years of treatment and I think a referral to a consultant should be done to try to figure this out.

Do you have stomatch or digestive system problems leading to malabsorption? I think some people with Chron's Disease might suffer from this (I knew someone who had both, but not sure if the Chron's caused the b12 deficiency) Is there any family history of this problem? Or did he suggest any possible explanation?

Good luck anyway.

iratira

If you are taking b12 I think you should be taking folic acid also.
And you may need your ferritin -storage iron checked.

emzolita

im the same, been getting them monthly since 2005 and my levels are just gettin lower.
my GP never seems bothered by it, but there has to be a reason. Fortunately I attend a Rheumatologist in Beaumont,for other reasons, and they are worrying about it slightly more.

Maybe ask your doc for a referral as you are not getting any better

Lemon21

Thanks for the replies. I have asked my doctor about a referral and he said there is no type of consultant for this. I am in the process of trying to get an appointment with a hematologist that i have been given the name of through a friend of a friend.

I went back to my GP last week and while he said the deficiency is not due to my diet but an absorption problem he doesn't feel there is anything else he can do and basically i just have to deal with it

emzolita

of course there can be reasons for it. Because of that and another thing in my blood, im being tested for Lupis every 2 months. Im not saying you have it, I dont even have it. But there are reasons these things show up in our bodies.

Your doc sounds like theyre taking all the money they can get from you without helping you much. maybe change GP and get a referral to a Rheumotologist or gastroenterologist. (if your GP is so sure it's absorbtion problems)

Ando's Saggy Bottom

Wouldn't a simple daily vitamin tablet give you all the B12 you would need (many multiples of it in fact)?

locum-motion

Pete Campbell wrote: »

Wouldn't a simple daily vitamin tablet give you all the B12 you would need (many multiples of it in fact)?

People either can or cannot absorb vitamin B12 from gut to bloodstream.
People who can, get plenty of B12 from their diet, unless they're vegan.
People who can't (because of pernicious anaemia or whatever), won't get enough from a vitamin tab.

girl2

Oh my God, your symptoms are identical to what I have been having of late. I suppose, for me, it all started when I noticed a very subtle struggle to find a word every now and again - almost like a bit of brain fog. I was tired, having palpitation and the likes.

Anyway, have had a bad stomach for years now and went to see a stomach consultant for an endoscopy. I mentioned the word thing to him and he instantly referred me to a neurologist. Went to see him, and he did a lot of cognitive tests and the likes and one test (name a lot of words beginning with a specific letter) - well I wasnt great in. And on that basis he sent me for a brain MRI. Got it - it showed some inflammation.

Went back to see him for these results and he maintains it could be an inflammatory disease of some type. Possibly Lupus or MS. I mentioned to him that I had suffered from something called Erythema Nodosum (a symptom of sarcoidosis) about 8 years ago. He then thought it could possibly be neurosarcoidosis. So he sent lots of bloods away looking for very specific things and sent me for a chest xray (for the sarcoidosis). All bloods and chest x-ray have came back clear. Hes reluctant to put me through a lumbar puncture until he has sent me to a neuro-psychologist, who will carry out a load of cognitive tests, looking for higher brain function, i.e. word forming, memory, planning, etc. Depending on these results - he will then consider the lumbar puncture.

I have been off work for the last 4 weeks now, and my symptoms have all subsided. I think that over the last couple of years, the level of stress I have been under is definitely a massive factor in all of the above. The light heads and headaches are practically gone. Palpitations are away, that feeling of shaking on the inside is gone, and tiredness is away too. Ive started to drink a LOT of water, eating lots of wholefoods, seeds etc. and have cut out sugary stuff and anything that may contain artificial sweeteners. Maybe the combined rest and change in diet has helped out.

Am just giving you an idea of the types of tests that I have been through for the same symptoms. Im not saying any of this is releveant to you, but it is very similar. I am beginning to wonder now, is it possible for myself that the GP would have missed doing a Vit B deficiency in the previous bloods that were done in the surgery?

colrow

I take B12 injections, I was told that I had lost my "Intrinsic Factor" which enables absorption of b12 via the gut, so no matter how much b12 I ingest, none will get into my body, hence the injections. I also take 5mg of Folic acid a day

Lemon21

Girl 2, i would definitely recommend getting your B12 levels checked, i have done alot of research and there are so many people that had been misdiagnosed with things like MS and it turned out to Vitamin B12 deficiency. So it is important to get it checked as it may reverse some of your symptoms. it might not be related but its definitely worth checking. Doctors seem to be reluctant to test for it.

I take a vitamin supplement with the RDA of B12 and folic acid, the problem is that it just isnt enough and my stomach cant absorb B12 so the only thing that can help me is the injections.

I just dont feel like my doctor is educated enough in this area, and i am in the process of trying to find a new GP, so if anyone is seeing a GP for something similar and finds them good, all recommendations are welcome..

Shryke

Lemon21 wrote: »

Girl 2, i would definitely recommend getting your B12 levels checked, i have done alot of research and there are so many people that had been misdiagnosed with things like MS and it turned out to Vitamin B12 deficiency. So it is important to get it checked as it may reverse some of your symptoms. it might not be related but its definitely worth checking. Doctors seem to be reluctant to test for it.

I take a vitamin supplement with the RDA of B12 and folic acid, the problem is that it just isnt enough and my stomach cant absorb B12 so the only thing that can help me is the injections.

I just dont feel like my doctor is educated enough in this area, and i am in the process of trying to find a new GP, so if anyone is seeing a GP for something similar and finds them good, all recommendations are welcome..

I don't know if you've looked at sub-linguals or how much use they would be to you personally but these come rated highly online.
http://www.amazon.co.uk/Jarrow-Formulas-Methyl-B-12-Lozenges/dp/B0013OQGO6/ref=sr_1_1?ie=UTF8&qid=1353522386&sr=8-1

There was a book published on this that seems to garnish a bit of praise too.
Could it be B12?: An Epidemic of Misdiagnoses.
http://www.amazon.co.uk/Could-B12-An-Epidemic-Misdiagnoses/dp/1884995691/ref=pd_sim_d_3

The_Conductor

Its really not something that a GP would encounter on a regular basis- I guess its in the name- General Practitioner, normally the illness/disease/conditions that would lead to malabsorption/noabsorption of B12 would be the specific remit of either a haematologist or a gastroenterologist. A haematologist will tend to look after symptoms, while a gastroenterologist is more looking after causes.

The suggestions in this thread about folic acid levels, ferretin, haemoglobin counts etc- are all valid- and are things that you should get checked on a regular basis- as they go hand-in-hand with B12 deficiencies.

You need to get your GP to refer you to a consultant haematologist- and I'd suggest enquiring around about waiting lists rather than simply taking the first suggestion that comes your way (unless of course you're going to organise a private consultation- while we're not allowed plug particular haematologists- I'd suggest getting one in a private hospital that has a close working relationship with public one- such as St. Vincents (irrespective of whether you live in the catchment area or not- its worth travelling to get good healthcare!)

Shane

hmefh7

Dear all,

I need to get a vitamin B12 injection, I have the actual vial, just need somebody to administer it.

How much will it cost and where in kildare/celbridge or Dublin 12 area can anyone recommend

Many thanks

locum-motion

hmefh7 wrote: »

Dear all,

I need to get a vitamin B12 injection, I have the actual vial, just need somebody to administer it.

How much will it cost and where in kildare/celbridge or Dublin 12 area can anyone recommend

Many thanks

Firstly, your doctor will decide which type of Vit B12 you need; Hydroxoobalamin or Cyanocobalamin, how many/how frequently you need it, and write a prescription for it.

Then, you will need to bring that to a pharmacy. Your pharmacist will then let you know whether that type is currently available or not. The company that has authorisations to supply these products in Ireland is notoriously unreliable, and both forms are frequently unobtainable.

If it is available, the pharmacist will give you a price, which will depend on how many the doctor has prescribed and which type.

If it is unavailable, then the pharmacist will let you know whether an imported version is available instead. There are several companies that provide this service to pharmacies (sourcing foreign versions of meds that cannot be got in Ireland), and the only thing they have in common is that they pluck an astronomical price out of thin air. If the normal one is unavailable, then it might cost anything up to 10 times more to get the unlicenced product.

Either way, your first stop is your doctor.

The_Conductor

locum-motion wrote: »

If it is unavailable, then the pharmacist will let you know whether an imported version is available instead. There are several companies that provide this service to pharmacies (sourcing foreign versions of meds that cannot be got in Ireland), and the only thing they have in common is that they pluck an astronomical price out of thin air. If the normal one is unavailable, then it might cost anything up to 10 times more to get the unlicenced product.

Either way, your first stop is your doctor.

Seriously advise- do not get the imported version. I'd had to a number of time. The glass vials do not tend to snap at the neck- they shatter. I've taken to opening them in a tea towel, so I don't get shards of glass in my hand- and even then about a third of the vials simply shatter.

A lot of us in the Crohn's group go North when its unavailable here- £12 per box- typically they'll only give us one box on a prescription- however this could last 6 months if you're on neocytamen once a month.

I have no idea what the issue is with the glass vials- the imported ones just seem to shatter rather than snap.......

locum-motion

smccarrick wrote: »

Seriously advise- do not get the imported version. I'd had to a number of time. The glass vials do not tend to snap at the neck- they shatter. I've taken to opening them in a tea towel, so I don't get shards of glass in my hand- and even then about a third of the vials simply shatter.

A lot of us in the Crohn's group go North when its unavailable here- £12 per box- typically they'll only give us one box on a prescription- however this could last 6 months if you're on neocytamen once a month.

I have no idea what the issue is with the glass vials- the imported ones just seem to shatter rather than snap.......

That's very odd, when you consider the fact that the unlicenced (imported) version that has been recently available is in a rubber-capped vial, while the IMB authorised version is in a 'snap-neck' glass vial!

Seriously, though: look carefully at the neck of the vial before you try to snap it. There should be a score line on it. Make sure you break it away from the score line. It should snap cleanly, whether it's an IMB-authorised vial or an imported vial.

BTW, just because it's imported, doesn't mean the quality is inferior. In these sort of cases, the alternative will be sourced from 'reliable' sources such as other EU countries or the US/Canada. Therefore the products will have been passed by the US FDA or other equivalent.

locum-motion

hmefh7 wrote: »

Dear all,

I need to get a vitamin B12 injection, I have the actual vial, just need somebody to administer it.

How much will it cost and where in kildare/celbridge or Dublin 12 area can anyone recommend

Many thanks

Sorry, I missed the bit where you said you already had the vial; therefore the question I answered wasn't the one you asked.

More often than not, the doctor that prescribed it will ask you to come back to the surgery for the doctor or the practice nurse to administer it.

In cases where that doesn't happen, in my experience it's usually because the patient has a family member who's a nurse and therefore qualified to administer the injection.

locum-motion

locum-motion wrote: »

People either can or cannot absorb vitamin B12 from gut to bloodstream.
People who can, get plenty of B12 from their diet, unless they're vegan.
People who can't (because of pernicious anaemia or whatever), won't get enough from a vitamin tab.

It has been pointed out to me that apparently this information is outdated and apparently some B12 is actually absorbed if the dose is big enough.

G20

Lemon21,
I think you're getting incredibly bad advice from your GP. Mine started by giving me a referral to a consultant neurologist. Luckily my VHI covered all of this. The neurologist diagnosed severe B12 deficiency. He recommended one B12 jab everyday for a week followed by one jab every week for a month. After that a maintenance dose of one jab every month which I've continued now for over 10 years.
Recently I've been studying the whole topic on the web. A very thorough article on Wikipedia informed me that the sublingual B12 is as good as the monthly injection. You must take massive doses. One 1000 mcg lozenge dissolved under the tongue every day or every second day. I've started this and it seems to be working so far. (at the moment I'm on one-a-day).

Now, I have a question of my own. I use Methyl B-12 from Jarrow Formulas. (an american company). After the tablet has dissolved for about half-an-hour in my mouth I'm left with a hard gritty core with the feel of sand. Question: what is this core made of and does it have any B12 left in it? Should I swallow it or just spit it out?