Pernicious Anaemia Society

Help !!

I've had PA gor three years now after going to the doctors with extreme tiredness and numb toes n pins n needles in arms n fingers. I get injections every 12 weeks and they only seem to last me 5 to 6 weeks. I've been numerous times crying asking for it earlier but they so no n that I must be depressed. I get depressed after about 5 weeks coz I'm that tired I have no life !! Aches in pains in my joints , blurred vision , horrible palpitations n fatigue, memory loss, freezing cold pins n needles. Dizzy n faint . My eye sight is worrying me quiet a lot. I'm looking for advice of what to do or buy to make things better for me. I've tried b12 tablets n they don't gelp. I wish my doctor could give me this every 6 weeks n my problem would be a lot better. I feel like a hypochondriac it's awful. I also haven't been told what my levels are like I've read some gave been. They just say there low but ok for a 12 week injection

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Gambit62Administrator

4 years ago

Sorry to hear that you are struggling and that the doctors aren't being much help.

My last actual trip to the GP to try and talk about B12 was in early May and all he wanted to do was fill me up with anti-depressants. They look at the symptoms and assume it is depression and the way things are at the moment they get brownie points for treating depression ... add to that that the standard questionnaire that they use to 'diagnose' depression would label anyone suffering from the most common B12D symptoms as depressed whether or not they actually are and its down the slippery slope.

Lots of people have problems with the frequency of doses - this definitely isn't a one size fits all situation.

I went away and decided to supplement for myself because I was getting nowhere with the doctor. I ordered some B12 ampoules on line but because they were going to take a while to come I really started using a nasal spray that I'd brought to help me get from one maintenance shot to the next without totally shutting down and found that using it more than the 'recommended' dose ie 3x2 squirts per day rather than 1 or 2 squirts made a huge difference. Went from scarcely able to walk to being quite happy perching at the top of a ladder pruning a grape vine in the space of a couple of weeks, so didn't resort to the ampoules until I had a cold.

Options in terms of supplementing are: sublingual tablets (through saliva), skin patches (through skin), nasal spray (through nose) or self injection. Ordinary tablets aren't going to work because you are no longer able to absorb the B12 through your stomach.

Methylcobalamin seems to work better than hydroxocobalamin if you have neuro symptoms ... which from your list you do. You could also try pointing out to your GP that some of your symptoms are neurological symptoms and as such you should actually be on 8 weekly maintenance shots ... but wouldn't blame you if you felt they were just going to dismiss you.

You can purchase everything on line - it is only the injections that are covered by the prescription only rules in the UK but it is still easy enough to get ampoules from outside the UK (eg Germany) where a prescription isn't needed.

The supplements that you get from health food shops are generally unlikely to be enough and you should be looking at something that gives you amounts of B12 measured in the milligram (mg) rather than microgram (mcg or μg).

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Gambit62Administrator

in reply to tiredkellie

4 years ago

Have sent you details of a couple of nasal sprays - you can also get sub-lingual sprays.

You need to make sure that you have plenty of B9 (folate) as well as body needs B9 to process the B12. I also found that I need to supplement B6 a bit (but be careful as high doses of that can cause neuroproblems - pins and needles etc - at doses of 100mg per day over a long period several months - in some cases this has been reported to be permanent). This is probably because if the body needs B9 it can convert B6 ... for me the B6 being low manifested itself as migraine headaches getting a lot worse - particularly in terms of sickness (and muscle spasms).

I'm a bit naughty and at some point I will have to let my GP know that I am self-supplementing - just for the record. Given that B12 symptoms have such a high overlap with other conditions it would be good to get regular blood tests done to rule out other possibilities. Unfortunately B12D doesn't make you immune ... infact, autoimmune problems tend to happen in groups - think rheumatoid arthritis is on the list.

I get periods of joint pain but they are related to water-retention during the build up to my periods (no pun intended) and they are relatively mild. Dealing with pain is really difficult - and here I make another way-out suggestion because sometimes meditation can help in dealing with it ... works because you learn to separate yourself from the pain and if you master that then you can get back to being yourself ... but it can be very difficult to get to grips with. Hoping that it is something that is a passing phase and may lift as your body gets to a point where it is able to continuously utilise B12 to alleviate all the damage that has been done by deficiencies.

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