Does Being B12 Deficient/PA Make You Feel Alone?

[LadyNZ]

Hi. Perhaps this question only applies to those who can't get a diagnosis, but currently (and for last 4 years) I feel so alone and almost frightened. I have changed my doctor and am getting 1 b12 injection a month, but I am still suffering B12 symptoms which I am sure the doctors I have seen don't recognize. Two years ago, I went to my local medical centre and said that I had tired arms and legs. Nobody could help me and didn't undertake any testing. I increased my B12 supplements and the symptoms went away, but periodically that, plus other symptoms return. Currently I have the tired arms and legs, a swollen, burning tongue and sometimes palpitations. I have posted previously and am now taking subcut injections, one yesterday and today, but I have to be careful as I am a long-standing diabetic and know that I have cardiovascular disease which is being masked by my low RBC count. My doctor dismisses this when I query it and says he cannot refer me to cardiology unless I am suffering severe cardiac symptoms. I know I need more B12 than I've been getting, but I also know I can't take as much as I probably need in case it precipitates a cardiac event. I finally asked to be referred to an endocrinologist. Through the public system this would take months, so today I rang his private rooms to see if I could hasten things. it turns out he is away for 7 months! There is nobody else taking his place. I just feel so desperate and sometimes it's all I can do not to breakdown under the strain. I am in NZ, not the UK. My doctor recently told me that because my RBC size is normal, I can't be B12 deficient, yet I've learnt through research that a high folate level masks the RBC size. My folate levels are high. I dare not argue with him, it would not make me popular. How do others cope with in these circumstances and can you offer any advice? I don't know how often to take the injections. I started to feel better yesterday after a week of high dosing of supplements and then adding the injection, but I was busy yesterday and today I feel weak and tired again. Sorry this post is so long.

[Sleepybunny]

"I feel so alone and almost frightened"

I can certainly relate to how you feel. I feel alone because I have no-one who is willing to help me fight for a diagnosis. I am doing it myself and so far have failed. I cannot believe how unwilling some medics are to diagnose by symptoms.

Some symptoms make me frightened eg I sometimes get pins and needles in my spine and worry about long term damage. My arms and legs are always tired, this symptom has not improved for me.

"I dare not argue with him, it would not make me popular. "

So sorry to hear this. There should be a partnership between doctor and patient .

"How do others cope with in these circumstances and can you offer any advice?"

It is so difficult at times. I try to seek support outside of my family eg on the forum, from friends, from other support groups in the community. I have rung the PAS on several occasions. I try to look for small things in life that give me some pleasure.

I'm not able to advise you on how often to inject as this is a very individual issue.

Are there any support groups for PA/B12 deficiency in NZ? Perhaps you could e-mail the PAS and see if they know.

"My doctor recently told me that because my RBC size is normal, I can't be B12 deficient, yet I've learnt through research that a high folate level masks the RBC size. "

If your iron is low then this can mask the red blood cell size...low iron makes red blood cells smaller and low b12 and/or low folate makes them bigger.

Have you ever had a "blood film" aka "Blood smear".This can detect unusually shaped blood cells in sample examined under a microscope. B12 deficiency affects the shape of some blood cells eg red blood cells and I think neutrophils. A patient with both low iron and low B12 may get both microcytic and macrocytic cells in their sample.

[LadyNZ in reply to Sleepybunny]

Thanks Sleepybunny. I know I'm not really alone and it helps to be able to talk to others in the same boat. I don't think I've had a blood film taken. Again, if I asked for one, I would be considered neurotic, for sure. I will just keep dosing with the injections until I feel I'm in a better place. What is so frustrating with this thing is that having started with 4 weekly injections, then going onto monthly injections, I was starting to feel normal again. Then in July, because I was feeling almost back to normal, I went berserk catching up on all the household and garden stuff that had been left undone for months. I've gone downhill since then, which proves to me that exercise burns up B12. yes, I shall have to try and appreciate the little things that bring me joy. Best wishes!

[Frodo]

Yes it does, and I have felt this way for many years since I experienced the most extreme symptoms and was fobbed off, and never became fully well again. But I cannot tell the doctor how I feel as then they would likely diagnose a psychiatric disorder! With B12 the most scary thing is that there seem to be no experts in the field or training for doctors, and it is up to an individual doctor whether to treat or not. And if they treat by the test and not the symptoms...

Sorry, not much help, but you are not alone: there are really helpful people in this group, and lots of information.

[LadyNZ in reply to Frodo]

Hi Frodo. That's one of the things about doctors that annoys me the most. None of them actually LISTEN to what their patients are saying. They make up their own mind and seem to think they know better than you do as to how exactly you feel. You're not alone now either. Joining this group has made me aware of all the others out there like me and as a community we can all support each other even if our medical professionals don't! Take care.

[Sleepybunny in reply to Frodo]

"But I cannot tell the doctor "

How true that is Frodo.

[Gambit62 Administrator]

Sounds like you may have an autoimmune response to high levels of B12 in your system - shuts down the transportation mechanism that gets the B12 to the cell in a useable form.

There isn't much out there on treating someone with an absorption problem who has that - the only thing I've really been able to find is this

ndcn.ox.ac.uk/publications/...

ie repeated high doses seem to help - I simplistically think of it as flooding my system with so much B12 that my immune system can't destroy all the antibodies.

I suspect that as lowered immune system is one of the symptoms of B12, treatment with B12 replacement probably means that the response starts to get stronger but it's just going round in circles as you get a bit better and then your cells run out of B12 and it gets worse again.

As you know from my story I responded by walking away - but then I've never really had a good relationship with the medical profession (goes back to being put on tranquilisers when I was 10 ... most of which were spat out of the window onto the garden whilst my mother wasn't looking :))

Cardiovascular problems are one symptom of b12D because of the role it plays in preventing the build up of homocysteine ... and I've not heard of concerns of B12 treatment causing heart problems before, so would be useful to know where that concern cames from.

GPs certainly aren't as aware of the neuropsychiatric effects of B12 and the numbers that have B12D confused with anaemia is frustrating beyond belief. It frequently isn't the first symptom to materialise these days.

[LadyNZ in reply to Gambit62]

I'm a bit like you, Gambit62. I don't have a lot of faith in doctors and I might say I have every reason not to! I'll keep hammering away with the injections although I've just realised that my insulin syringe needles are too short, but I'll make do until the new lot I've just ordered arrive. I simply can't afford to keep using supplements. I'm only on a pension and it's costing me close to $250 a month for the amount I need to take. The injections will be much cheaper. Best wishes!

[Gambit62 Administrator in reply to LadyNZ]

Can understand not wanting to go on with supplements at that cost. I use various nasal sprays and would probably say that I spend about £2 a day getting the amounts I need.

Don't have a clue how you get through to doctors. I've been thinking about trying to contact the neurologist who did the paper on treating patients with a significant auto-immune response to high levels of B12 - particularly as he is very local and sharing my story but just don't get round to it and not sure that I won't go on the 'nutters' pile anyway but will get round to it eventually.

[Allyson1 in reply to Gambit62]

Gambit would you have a link to that paper? I am interested in hearing more about it, particularly how they would test for an autoimmune response. I wonder how common it is and whether it's safe to continue taking high B12- wouldn't it worsen the autoimmune condition?

[Gambit62 Administrator in reply to Allyson1]

only the abstract linked above - unfortunately it looks like quite a hefty subscription for the full article and although it would probably be worth it to delve into other articles I don't have the time at the moment so haven't subscribed.

[Allyson1]

Yes I feel very alone too, it's like living in the Twilight Zone trying to get doctors and family to understand.

I think the cognitive and psychiatric changes really made me feel alone. I was adamant that something was happening to my mind and was begging my family for help figuring it out but they just thought I was crazy and needed to snap out of it. I ended up checking myself into a closed ward for a week and..that is a lonely experience.

It's also really made me doubt my ability to be aware of what's happening with my body and to get the help I need to prevent the worst.

And the neuropathy and weakness and loss of my body sense has made me feel so alienated, like I don't really belong in the world. If my nerves come back I'm not sure I could enjoy them or feel natural about my body anymore...this has been such a terrifying drawn out experience.

I'm sorry you're suffering! I can't believe that that endocrinologist is gone for several months and they have no one else to refer to?!

It's perfectly possible to be deficient in b12 but have a normal RBC size, particularly in the presence of low iron or high folate. Have they tested your iron? Does your doctor give any reason for the low RBC count at all?

B12 and folate and cardiovascular health have such a complex relationship that it's a shame your doctor won't refer you to a cardiologist. Does B12 raise your blood pressure, is that why you're concerned about a cardiac event?

I had terrible palpitations when I first started b12, but I think that was hypokalemia, plus uncontrolled blood sugar and problems with my adrenals.

You are quite justified in arguing your case to your doctor, clearly something is the matter! I've never been good at managing doctors.