Had my B12 injection stopped like many on here.It was more that they assume that the B12 in my body is being absorbed properly. which isn't always the case.I always thought that an absorption test would be more useful than the regular blood tests.
We all have this condition on this forum and doctors are assuming that the B12 is being properly absorbed to me is crazy.Making a fuss over three monthly injections and how much you need them for LIFE and then stop them for no reason,with these claims that the B12 will stay in your liver for ever long,blah,blah,blah!
The only cases where it is re-arranged afterwards is for peripheral neuropathy and similar conditions where the non-diagnosis of the condition is what has caused this in the first place.I was diagnosed through the state of my fingernails,oddly.
Luckily I have some hydroxy to take by mouth but how I deteriorate toward the end of the month may mean I have to get B12 to inject myself (which I wouldn't be thrilled about as I'm not keen on needles anyway).I'm sure doctors aren't too thrilled about people injecting themselve but you do what you have to if you're suffering.
Sorry for being a bit Led Zeppelin and "Rambling On"
Be safe everybody.
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dvanian22
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I feel your pain. Like most people on this site I recently received a ‘Dear a John’ letter from my local Surgery and think COVID 19 is being used to reduce the number of B12 injections being issued and therefore reduce costs. Those who make these decisions don’t seem to understand that for many b12 can’t be absorbed through diet and therefore tablets won’t work. If Surgeries practice ‘hot and cold’ areas it would be easy enough for injections to be administered. It’s just IMHO that COVID 19 is being used as a scape goat.
I was diagnosed as suffering from PA 17 years ago by my GP, who has since died. When his replacement checked my records last week, it seems that I wasn’t suffering from PA. I just wonder what bit of the diagnosis I didn’t understand?. I’d never heard of the condition before, so how would I have known about it. The symptoms somehow explained my extreme tiredness, fatigue. Weepiness, numbness of toes and fingers, Vertigo, feeling vague as it everything was happening round me...I’m sure I don’t need to go on.
The news left me shattered. I feel I’ve been living a lie for the past 17 years, but what do I do? Eventually I’d like my b12 levels checked, but in the short term I’m taking a 1000zmcg tablet of b12 daily and am slowly beginning to feel as if I’m coming out of a deep fog.
What I’ve just told you all won’t help any of you, but I think I know what the extreme tiredness feels like. Time will tell if I ever have another b12 injection
Hi I know how you feel. I was diagnosed in 2007 and have had b12 injections every 10 weeks for 13 years. My gp told me they are using the pandemic as an "opportunity " to move people to tablets. The NICE guidelines haven't changed so where has this new directive come from??? I'm taking sublingual tablets at the minute but time will tell if they work.
I sent to complaint letters to the doctors and wrote to my mp... No use.... I have mine 8weekly which the. Doctor couldn't understand.... Been having it 8 weekly since I was 16 im now 44...but anyway got sent for a blood test they couldnt give me the figures due to confidentiality but apparently I have a good store now of b12.... So kept the. Cancellation of my April's jab and now have an appointment for end of July all being well..... Last jab was Feb.... Ridiculous
Same story for me. I've written to the CCG and my local mp. After 13 years I'm now being told I can manage on tablets and will be reviewed in August for a blood test!
Hi all, everyone can get any medical records its the law! all hospitals have 'access to records' department. there should be a request form on each hospital web or secretary at GP's. In 2017 because of all neuro symptoms I requested my records following ACDF and brain surgery for ruptured Rt aneurysm and neurology surgeon could not tell me why I was dizzy, dead hands feet, disturbed vision ... I requested all radiology to find I had a left aneurysm, not told, not monitored. big row with surgeon ... and he didn't know about access to records. I had urgent brain surgery on the LT side by another surgeon. Get your records and get B12 DIY injections. Doctors would not deny a diabetic insulin. take care all. Have been told now by gastroenterologist I used to work with all neuro damaged is permanent, all because symptoms ignored told it was damage to brain following surgery ... it was b12 deficiency Jac
No need to apologise for " rambling on" lol. We know exactly how you feel. My gp told me they were using the pandemic as an "opportunity" to move everyone onto tablets and "review" how we are managing in 3 months! I told him that this has caused a huge amount of stress to patients already anxious about covid 19
Have you also considered putting any concerns about treatment into a brief, polite letter to GP?
In UK, letters to GP are supposed to be filed with medical notes. Letters could contain symptoms, test results, personal and family medical history, extracts from UK B12 documents/articles, info from PAS etc.
Keep copies of any letters written. It is useful to have a paper trail in case there is a need to complain in the future.
May be worth informing local MP of any difficulties in getting treatment and contacting AMs in Wales, MSPs in Scotland and MLAs in Northern Ireland.
People whose injections have been stopped/delayed may want to think about drawing GPs attention to the potential for permanent neurological damage if a person is under treated.
If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets I think it is important to keep GP informed.
If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.
Impact of Pandemic
Unfortunately this is an extremely hard time to argue for reinstatement of injections.
Many on forum have had B12 injection stopped/delayed or swapped for oral tablets during Covid crisis.
Many on this forum have been put in a situation where they have no alternative but to source their own supplies and self inject.
Injections stopped due to pandemic
Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.
Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.
At the moment, GP surgeries may argue that these are exceptional times and they cannot offer injections at the surgery. Some on forum have asked their GP surgery if they can be taught to self inject.
WHO (World Health Organisation) classifies B12 as an essential medicine so in my mind, people should not be denied treatment.
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Symptoms Diary
I think it's worth keeping a daily symptoms diary which tracks changes in symptoms over time and when any treatment is given. It could be useful evidence of deterioration ( or improvement) in symptoms that could be shown/copied to GP if necessary.
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
Thanks for your brilliant comprehensive suggestions for coping with all this and letters to GPs etc. I cant believe we have to do all this. Which is why I choise to SI and dont feel the need to talk with my GP about it.
I did manage to get mine this time but only because the appointment was for the B12 and some blood tests for the hospital. They tried to cancel but relented when I said the blood tests were for another condition being monitored by the hospital. I got the usual message about being able to manage without and taking supplements that I could buy from the chemist. Although they said that was unless I’d had a gastric bypass or suffered from PA (I don’t have a diagnosis of PA) which is different to what others in this forum have been told. However, I have now received a text to say that I have a condition that will be subject to annual review online and that I’ll receive an email soon. I’m pretty sure I know what’s coming next! I feel pretty fortunate compared to others in here as my main symptom was tiredness and since I’m not doing a lot in lockdown I’m ok. However, what I don’t understand is why I was given injections in the first place if they don’t think I need them. I actually asked about tablets when I was first told B12 was low. I have had one of the tests for PA but I can’t remember if it was IF or antibodies because at the time it didn’t really mean anything to me and I was told it was normal. Also been deficient in vitamin D and low in folate. I keep asking myself whether my diet is really that terrible or whether there is something else going on!
Sending sympathy to all of you who have terrible symptoms and are being denied B12.🙁
Do not worry about rambling on. We all do it. And you are right,. We all NEED our B12 injection. Glad I plucked up the courage to do it myself. I shall keep doing that. We all stick together on here and help each other. It is a wonderful Forum.
I must be one of the lucky ones as my nurse from my GP surgery kindly phoned this morning to ask if it was okay for her to give me my B12 at home this morning. She arrived in mask, gloves and apron and injected me in the garden ( thought it would be less chance of either of us transfering the virus if we had it)
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The difference between intrinsic factor antibody test and MMA
Could this be B12
Excellent explanation about B12 and malabsorption: may be due to other things besides pernicious anaemia
A Need to Rant and Flip Slightly
