Bit of recent history: in March I got 10 injections over the course of 6 weeks (3x a week for 2 weeks then 1x a week for 4 weeks) and I got my bloods done about a week after this. The results came back, saying my levels were above 2000 and I therefore didn't need to continue with treatment.
Over the next 4-6 weeks, I began noticing my symptoms returning - tiredness, general lack of energy, twitching in finger and thumb, pins & needles in my back, neck and scalp and then my hair started to fall out.
Got my bloods re-tested about 2-3 weeks ago and went to my GP today for the results and she said my B12 levels were still above 2000 so I should wait and come back in 2-3 months. I told her about my symptoms and she just shrugged and repeated herself.
Any advice on what to do now?
Written by
KCxo
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oh what is the matter with these people. of course the b12 reading would be like that after the injections you have had. have a word with the pernicious anaemia society. I am sure you will get more advice from this site too.
Oh dear KCxo. This is a nonsense! Shrugging and repeating as a response to symptoms is just not good enough.
So...the first thing to say is that high levels of Serum B12 are simply an indication that treatment has taken place. They will and should be high because you've been injected with lots of lovely B12!
So 'within range' or high serum B12 levels should NOT be used to determine treatment protocols once treatment has already started. They should only be used to ensure that B12 levels are not too low, in which case, more B12 should be given. In addition, the serum B12 test has been proved to be inaccurate and can give false normal / high readings. Not many GP's know this.
Also...serum B12 levels only tell you how much B12 is sloshing around in your blood. They do not tell you how much is being actively used by your cells. If you are still getting symptoms, not enough is getting where it should , and you need more! (Sorry, quite complicated and I haven't got enough brain or time to explain).
What this means is that your GP should be treating your SYMPTOMS, not your blood levels. Again, not many GP's know this.
In short, most GP's are extremely poor at treating B12 deficiency / PA.
I notice that you have neurological symptoms. Your treatment regime, as per NICE, BNF and NEQAS guidelines should be B12 injections every other day until no further improvement and then every eight weeks (although many people need them more frequently). It's really important that this happens without delay to ensure that neurological damage does not become permenant. This is contained in the BNF (British National Formulary - the GP's prescribing bible). Your GP will have a copy on his / her desk and could look it up in thirty seconds flat! (Second item so you might have to encourage them to read further than they usually do!)
Please note, that it is possible to have neurological symptoms (and thus need the intensive regime) without having PA. Some GP's do not know this. I say this because it's not clear from your post whether you have been diagnosed with PA. The treatment for B12 deficiency and PA is the same: enough B12 to make you well!
Really sorry but I don't have enough time to put in lots of links to relevant information and guidelines. If you click on my user name and scroll down to the first post I wrote, you'll find lots of really good information and links that have been sent to me. It might be a good idea to have a look through and print of some of the guideline to highlight and take in to your GP. In particular, look for NICE, BNF, NEQAS guidelines and a summary document of guidelines produced by Frank Hollis (user name Fbirder).
The treatment you describe is, unfortunately, not unusual and I expect you're beginning to get the picture by now. Medics (nurse too) are very often really bad at this and you may have to become very persuasive to get the treatment you need to get and stay well. You may encounter a level of hostility when asking for more B12, that will shock and surprise you. Please remember that this is not your fault. It is something that we are all, unfortunately, familiar with!
If you lived in Europe, you could walk into any chemist and buy as much injectable B12 as you needed to keep well.
If you run into a brick wall with you GP (which many have), you could contact Martyn Hooper at the PAS, who would be able to intervene with your GP, if required.
Many people have, as a last resort, taken the decision to self inject. If that is ultimately a route you decide (or are forced) to take, there are people here who can help and support you.
Anyway, please do go back to your GP with guidelines, a large dose of determination and courage!
Post again if you need further help. Good luck. Let us know how it goes.
give the GP one more go and if they really won't listen then try treating yourself. The materials provided above should be sufficient to get through but ...
Lots of good replies. Are you a member of th Pernicious Anaemia Society. If you have no luck, you could contact Martin Hooper, founder, for advice about what to do next. Good luck 😊
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