B12 Deficiency

Meathlass

Does anyone know if this qualifies as a long-term illness and if I could get a GP card because of it? I don't qualify for the card in any other respect - I'm single, no dependents, earn about 30,000 a year and rent so no huge expensese except petrol. I've just been diagnosed and had to go to Doctor's every week for injections for past 6 weeks plus the medication was costly.

Is there anyone else here with this deficiency? My doctor has ruled out all causes for it and is stumped. He seems happy enough not knowing what's causing it, not too happy with this myself. Would perfer to know in case there are any complications further down the line.

leeroybrown

You should ask your doctor about the longer term treatment costs. My understanding of the injection treatment is that it tends to be intensive initially followed by far less frequent injections to maintain the B12 level. Obviously, I'm *not* a doctor and you should ask your doctor how he plans to continue the treatment.

Presumably your doctor is happy that no serious cause for concern is present and wishes to pursue the standard course of action with injection treatment. Perhaps you should seek a second opinion or asked to be referred to a specialist.

Meathlass

leeroybrown wrote: »

You should ask your doctor about the longer term treatment costs. My understanding of the injection treatment is that it tends to be intensive initially followed by far less frequent injections to maintain the B12 level. Obviously, I'm *not* a doctor and you should ask your doctor how he plans to continue the treatment.

Presumably your doctor is happy that no serious cause for concern is present and wishes to pursue the standard course of action with injection treatment. Perhaps you should seek a second opinion or asked to be referred to a specialist.

Yes you're right, from now on I have to go back every 3 months and get an injection. I suppose 40 euros every 3 months is nothing but before this i could count on one hand the times I was in the doctors so the initial expense has been difficult. The reason I am anxious about the doctor is that my initial b12 count was very very low (he said it was the lowest he or his colleagues has seen before). It was 75 when the average should be 300-400. I would just be concerned that there are underlying factors responsible that he hasn't picked up on.

The_Conductor

I suffer from severe B12 deficiency, as a complication of Crohn's disease. The Crohn's Disease itself qualifies for the EUR95 a month scheme (not the long-term-illness scheme) which covers prescriptions etc- doctors bills etc, I have pay myself. The Neo-cytamen is annoying- particularly if you're going to be on it indefinitely. My GP organised that I attend a course for diabetics and others who have to give themselves regular injections, and I now do the injections myself- it saves a GP visit, and all I have to then is periodic blood tests (severe anaemia being a worse problem for me than B12 deficiency). Longterm lack of treatment for the B12 deficiency has caused very-mild nerve damage- so make sure you don't forget to get the injections regularly.

S.

Meathlass

smccarrick wrote: »

I suffer from severe B12 deficiency, as a complication of Crohn's disease. The Crohn's Disease itself qualifies for the EUR95 a month scheme (not the long-term-illness scheme) which covers prescriptions etc- doctors bills etc, I have pay myself. The Neo-cytamen is annoying- particularly if you're going to be on it indefinitely. My GP organised that I attend a course for diabetics and others who have to give themselves regular injections, and I now do the injections myself- it saves a GP visit, and all I have to then is periodic blood tests (severe anaemia being a worse problem for me than B12 deficiency). Longterm lack of treatment for the B12 deficiency has caused very-mild nerve damage- so make sure you don't forget to get the injections regularly.

S.

Thanks for that. I don't think I could do the injections myself, I don't mind other people doing it but know I wouldn't be able to inject myself, too squeamish about needles. Luckily I don't have anaemia so don't have to worry about that. I do have mild nerve damage though - just wish I knew what the underlying cause was.

The_Conductor

There doesn't necessarily have to be an underlying cause. We're all different- some people absorb some vitamins/minerals better or differently than others. One of my GPs patients absorbs unreal amounts of calcium from foods and is almost unable to walk from the buildup on her bones.

B12 deficiency can be caused by a lot of different things- chronic anaemia, celiac disease, Crohn's Disease or other gastrointestinal diseases that may have been surgically treated at the ileum, prescribed use of proton inhibitors- etc. etc. etc- its very difficult to put your finger on any one thing. B12 deficiency also seems to be extremely common in those diagnosed with mild to severe autism- and a long list of other ailments, where it goes side by side as either a contributing factor or a causal sympthom.

There is a very helpful book on B12 deficiency by Sally Pacholok available on amazon- its called "Could It Be B12? An Epidemic of Misdiangoses" I'd take a lot of the stuff in it with a grain of salt, as she does tend to over sensationalise, but it is quite informative nonetheless.

Meathlass

smccarrick wrote: »

There doesn't necessarily have to be an underlying cause. We're all different- some people absorb some vitamins/minerals better or differently than others. One of my GPs patients absorbs unreal amounts of calcium from foods and is almost unable to walk from the buildup on her bones.

B12 deficiency can be caused by a lot of different things- chronic anaemia, celiac disease, Crohn's Disease or other gastrointestinal diseases that may have been surgically treated at the ileum, prescribed use of proton inhibitors- etc. etc. etc- its very difficult to put your finger on any one thing. B12 deficiency also seems to be extremely common in those diagnosed with mild to severe autism- and a long list of other ailments, where it goes side by side as either a contributing factor or a causal sympthom.

There is a very helpful book on B12 deficiency by Sally Pacholok available on amazon- its called "Could It Be B12? An Epidemic of Misdiangoses" I'd take a lot of the stuff in it with a grain of salt, as she does tend to over sensationalise, but it is quite informative nonetheless.

That's the thing; as you've mentioned there are lots of reasons but none of them fit the bill. I've had the test done for pernious anaemia which was negative. Don't have celiac, Crohn's, no surgery, don't take any medication. Generally healthy and fit if a bit overweight. Reason I'm concerned is I've done a lot of travelling and worried I may have picked up a tapeworm or something in South America, some sites report this can lead to B12 deficiency.

The_Conductor

Its worth exploring- but if it is something you've picked up (like tapeworm) normally there would be far more sympthoms than B12 deficiency. There are medications that you can take which should clear up a tapeworm infestation very quickly, without side effects- it might be something you could explore for your own peace of mind, however unlikely it may be.

Its a difficult one.....

Meathlass

Yeah, I'm sure you're right. I'm just freaking myself out by reading up on it on the internet! I have no other symptons except high blood pressure which was how they found the b12 deficiency in the first place.

The_Conductor

The internet is a terrible place for reading up about conditions and sympthoms. You get all the extreme cases- worst case scenarios and also miracle cures etc. You never hear about the average person- and the average things that happen to him or her. You can research it offline- there are several good books normally for any given condition or sympthom- which will normally be more balanced in nature.

Particularly with medical info- the internet is a dangerous, dangerous place.......

Meathlass

Yeah, some of the stuff is ridiculous, particulary on the American sites. I got my doctor to recommend sites and looked at those so don't think I've gone overboard. Just bought that book you recommened so thanks for that.

beeno67

Meathlass wrote: »

. I've had the test done for pernious anaemia which was negative. Don't have celiac, Crohn's, no surgery, don't take any medication. Generally healthy and fit if a bit overweight. Reason I'm concerned is I've done a lot of travelling and worried I may have picked up a tapeworm or something in South America, some sites report this can lead to B12 deficiency.

If you definitely have had the test for pernicious anaemia and it is negative, then I don't see why you need injections of B12. Oral tablets should be enough. Double check with your GP. B12 injections are for people who cannot absorb B12. The normal B12 requirement is 1ug per day. Taking a B12 supplement which is usually 1,000ug a day should be more than enough. Go back to GP first though and discuss all this.

Clink

beeno67 wrote: »

If you definitely have had the test for pernicious anaemia and it is negative, then I don't see why you need injections of B12. Oral tablets should be enough. Double check with your GP. B12 injections are for people who cannot absorb B12. The normal B12 requirement is 1ug per day. Taking a B12 supplement which is usually 1,000ug a day should be more than enough. Go back to GP first though and discuss all this.

I've just been diagnosed with this as well and according to my doctor one injection is the equivalent of taking 6months worth of pills. If the level the OP has is only a level of 75 she must be feeling very low and the doctor would give the injections to make her feel better as soon as possible. I've been told I'll be a new person in 6months.

OP, what other tests were you sent for? I've to go for a scope (whatever that is) to try and find a cause. And what other symptoms were you having? I only found out as every time I'd go to the gym I'd get very dizzy and then a splitting headache and my blood pressure would go sky high. But now there's lots of other things that were wrong that I've since found out were symptoms (tingling in my fingers, no periods, hair falling out, bruise very easily, nose bleeds).

Also you should sign up for VHI Healthsteps, at least that way you'll get €20 back on every visit to the doctor- by the way mine is only charging me the price of the injection and not a consultation fee each time I go (€20).

beeno67

Clink wrote: »

I've just been diagnosed with this as well and according to my doctor one injection is the equivalent of taking 6months worth of pills. If the level the OP has is only a level of 75 she must be feeling very low and the doctor would give the injections to make her feel better as soon as possible. I've been told I'll be a new person in 6months.

OP, what other tests were you sent for? I've to go for a scope (whatever that is) to try and find a cause. And what other symptoms were you having? I only found out as every time I'd go to the gym I'd get very dizzy and then a splitting headache and my blood pressure would go sky high. But now there's lots of other things that were wrong that I've since found out were symptoms (tingling in my fingers, no periods, hair falling out, bruise very easily, nose bleeds).

Also you should sign up for VHI Healthsteps, at least that way you'll get €20 back on every visit to the doctor- by the way mine is only charging me the price of the injection and not a consultation fee each time I go (€20).

Hi Clink. My point was that some people are unable to absorb B12 from their diet and therefore need injections. If you are able to absorb B12 you do not need injections. They do not work faster. The OP seems to be saying she has had the tests and she can absorb B12 from diet so I am wondering why she is not on tablets

Clink

Hey beeno67, see what you're saying! Well I'd imagine that if she's been told that she has no problem absorbing B12 then it's just a matter of fixing her diet to eat more? How do they test to tell if your body can absorb it?

I don't know enough about this as I've only found out I have the same problem a week ago and haven't had any tests done yet. Only going purely on what my doctor told me.