Hello all. I sent in an email with my symptoms and my needing more frequent injections of B12.
I received a quick reply telling me to make a telephone appointment and speak to a doctor. as 'they' don't check emails very often. Also said they would allow the nurse Practitioner, to whom it was addressed, to read my email. No signature just the medical group name.
I got the telephone appointment to be told that my blood test shows I no longer have a b12 deficiency. I explained how it would be in range because I was having b12 injections. That to the nurse Practitioner, means it is good that this has boosted my level. I did actually say that is not the case, and I should not have had a blood test once I had started the injections. Brick wall comes to mind. I suggested that doctors need to read up on B12d because they are getting it all wrong.
When I told her it was a worry that some symptoms could become permanent if under treated. But, I was told they would already be permanent, because we dont know how long I had been deficient.
My reading last July was 76. This August it was above 500. So I no longer have the deficiency. Tried to mention active and inactive b12 but I'm not knowledgeable about this. It was ignored anyhow.
My symptoms could be from many different reasons. We shouldn't put everything down to b12.
I'll do a memory test if you like. A neurological test too if that will help you to accept things.
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3rdNettydoon
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What a stupid way to interpret an unnecessary test. Keep fighting it. I get so angry at the ignorance. If they dont know fair enough . They need to educate themselves and at least read Nicd and BSH guidelines !
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with normal range serum B12.
May be more effective to put queries about treatment into a brief as possible, polite written letter. My understanding is that letters to GPs are supposed to be filed with medical notes so hopefully harder to ignore. I don't know if same applies to e-mails but suggest including a request to file a copy in medical records.
Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, more B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs etc.
UK forum members have reported problems getting their B12 jabs during pandemic eg injections have been stopped/delayed/ frequency reduced or swapped for oral tablets.
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.
Delighted to hear your so improved. How did you learn how to inject. I'm so scared my husband doesn't get the injections from the GP. Took him for a Nerve/ Muscle test today, which would reveal any damage done to the Nerves in his legs. Private appointment and very costly, bur need to determine some facts. I'm onto my second GP practice owing to the unbelievable abusive action from some doctors who are unaware of the needs of patients suffering B12 deficiency. Sadly, ignorance and anger go hand in hand.
Start another post on this - as people who can help with this might miss the question this far down the post.
When I started self-injecting, my GP suggested asking the nurses, but none were willing to teach me. I learnt how to do it from youtube videos, but you have to sift through quite a few to find a safe and trustworthy one. In the end, I chose the one with the most sensible underwear! Whenever I was unsure about the process, I would ask the people here what to do, how to improve technique or find out what I was doing wrong.
Difficult at the time as I had no computer, was using the library so on limited time, then had to remember what I had seen or been told. I was not in a good way at the time, so memory, cognitive problems and anxiety levels working against me. Relaxing muscles was difficult at first. I count myself lucky I didn't have the shakes, as I doubt I would've had the confidence to do it.
To be honest, I was a bit rubbish at it for a while. Now it's just a routine part of keeping well.
Sorry to hear this, 3rdNettydoon (love that name, always makes me smile).
As you well know, the blood test is showing them only that your injections have raised your serum level B12. The cause for your initial massive deficiency (76, whatever the unit of measurement, is very low) has not been identified. How can they possibly know that your B12 level won't just continue to deteriorate without injections ? Why would they want to take that risk ?
Felt like I was dying when my B12 was 196 ng/L - the range started at 197 ng/L. Lucky me: I was given B12 injections.
4 months later, I had a B12 injection and then was sent by a locum GP to have a blood test at the local hospital. Guess what ? It was over the measurable amount (over 2000 ng/L). I still felt like I was dying though.
Two months later, it was 860 ng/L. Felt worse than ever.
Two months after that, it was over measurable amount again (over 2000 ng/L) - but this time, my MMA was also tested, ferritin, folate, vitamin D... and B12 reloading injections given twice a week - and given 3 months of ferrous sulphate and folic acid ! I had a confirmed diagnosis of functional B12 deficiency because my MMA was raised.
This was in 2016 and was the last time my serum B12 was checked. "It's pointless," said my GP.
Quite right.
The amount of B12 in your blood does not mean you are well.
It took 2 years of very frequent injections to get recognisable improvement, 2 years to get folate and ferritin levels better and stabilised, vitamin D- waiting to see with next Dexascan (I've got osteoporosis of the spine), and MMA was tested for the 6th time last year -and is finally within range ! Never feel like I'm dying now - and never want to feel like that again.
We are all different, but if it is possible for me and Hidden to experience improvements, years after treatment started, then why not you and Nackapan too ? Don't let anyone else decide when to give up on your wellbeing - "already permanent" my giddy aunt!
Most of the symptoms that I have discussed with GPs or consultants remain unrecognised by them as indicative of my B12 deficiency, yet are on all the lists compiled by those with the condition, and as common as muck on here !
No alternative causes for any have been forthcoming, but suspect that all the non-visible ones have already been dismissed as "all in my head" - in which case, if true, pretty much irretrievable then !
Can I suggest that you download the more comprehensive lists, tick those that apply and use them to help your practice realise what it feels like to be you ? Find one good GP, if you can, and perhaps they will begin to notice you. Eventually, they might see for themselves what you are going through.
So relieved that Martyn Hooper is going to be involved in the new set of NICE guidelines - that means one person on the committee knows.
Thank you. It's heartening to read positives. I've been on 10 weekly injections. I am having another blood test the day before my next injection is due. I'm hoping this is enough time to show if there is any drop in my B12 level. Also I take a multivitamin, should I stop taking these until after my blood test?
It is hard to understand what your GP is trying to do.
On the one hand, they want to keep your B12 treatment as it is because of your current B12 serum level, on the other hand they believe that your long-term severe B12 deficiency has left you with permanent damage- which surely could only be determined by a neurologist (assuming symptoms are neurological) - a referral they have not yet made (?) .
Why assume permanence? Why not try more frequent injections before giving up on repair? What harm could it do ? I can't see their thinking here at all.
Perhaps replenishment alone (and then suggesting monitoring on tablets) would be a suitable treatment response if you were vegan and the deficiency was caught early enough. Perhaps not, as being vegan does not rule out PA or underlying B12 deficiency issues !
Otherwise, it appears to be an error of judgement, since testing during treatment is not recommended in guidelines - unless, as with my GP, it is due to an early concern about poor response.
Sleepybunny has given you links that will help, including to guidelines that your GP should be following . I think she is totally right about trying another brief letter since there was no logical explanation given to you over the phone - and no permanent record kept. Read her first link re writing to your GP -and see how you feel.
It is not possible for the GP to say that your blood test results show you no longer have a deficiency: they are showing the B12 in your serum that they injected you with. If the injections stopped, what would the ensuing results show ? A normal B12 level ? For how long ? If they cannot guarantee that, then they really can't make that claim.
Your initial level was very low: what was the cause ?
If you look at the guidelines, you will find that treatment for those with neurological symptoms starts with injections given every other day until no more improvement can be had, then injections every 2 months. This decision to reduce injections is made by review; a dialogue is expected. Given that they must be aware of how low your first B12 result was, and that they think damage may be permanent, a little generosity wouldn't come amiss regarding opportunity to improve. Nerves take time.
So yes, you were right to ask for more injections in your email if you have any neurological symptoms.
I think I'd write again- and quote guidelines.
Even if your multivitamins have B12 as one of the ingredients, it is unlikely that you are absorbing much, if anything, in this way. Your B12 level, even now, is not massively high. However, since it is possible that they are trying to get a better picture of overall health, other test results might be skewed. Stopping them now might help them.
Thank you. This is a help. I would love to try frequent injections. The injections I have do help. My energy levels still need upped but it's nothing as poor as when my b12 result was 76. Also my burning shins and my feet improve too, but I feel them coming back before my next injection.
My main concern is the mental health effects. I have been diagnosed as having depression, panic attacks, acute anxiety for about 50 years. I rarely looked forward to a tomorrow. Until I had b12 injections. It is a new experience now that I can plan and look forward to some things. With more frequent injections I was hoping to be free of anti depressants at last.
I am having another b12 test and I'm a bit worried it will have stayed high. Would it be worth having the IF done too? I am leaving it 'til it will be 10 weeks since my last injection. Can this work?
This same practise nurse told me a year ago, I had b12d and by my low b12 she didnt need to do the IF test. Therefore the recent test was negative.
She has b12d herself and gets injections. Would it be out of order to ask if she has her levels taken?
I'm so pleased that you looked this up. All pit villages had them at one time. But, most of them were kept lovely decorated. Squares of newspapers on a hook. Ooo, I'd better stop now. I could go on for hours.
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