First of all I feel I should apologise for not thanking Hidden clivealive Pittman Galixie for responding to my previous post. I was having a tough time. The post was regarding a GP appt where I was told I couldn't have more regular injections, it wouldn't make any difference, the fact that I feel better after an injection is all in my head, the CKS guidelines stating every 2 months for neurological symptoms are 'from the 90s' and so on... Doctor basically responded to my request for treatment in line with guidelines (every 8 weeks for neuro symptoms) by saying that I need another serum test and after that she would decide if I needed more regular injections.
Had my blood test yesterday and went for my b12 (dutifully after 12 weeks) today. Was told by nurse that results are in, doctor has reviewed and declared 'normal' and is therefore withdrawing all further b12 injections pending further investigations into my neuropathy (at least he referred to neuropathy so they are finally admitting that is one of my issues).
Am now writing a letter of complaint, pointing out that I wasn't given correct loading dose for neuro symptoms (had 1 a week for six weeks as nurse was very busy...), didn't get referred to haemotologist, didn't have cause for low b12 investigated and have not been prescribed correct maintenance dose - so not at all in line with guidelines. One thing I wanted to check if anyone can help - does anyone have a reference I can provide which shows that it is pointless retesting b12 and saying I am now 'fine' as level is 'normal'
For reference my initial level was 175 (187-800). One test I had 3 weeks after initial treatment showed 1400 (187-800) and my test yesterday just before my injection was 660 (187-800). This is the test she has used to determine I am no longer deficient and don't need b12 any more...
My folate is normal, I tested negative for coeliac but gastritis did show up on endo (if any of that is relevant...)
(My warning by the way - ask for more frequent injections and they may get taken away completely!!!)
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HCC2
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HCC2 - I'd really recommend that you join and contact the PAS directly. The first step is always broaching things with your GP but they may also be able to intervene and do so from a position of greater standing. Think this is particularly important as you have had your injections removed.
The BCSH standards were reviewed and revised in 2014 and I think that even the NICE standards have been reviewed more recently than the 1990s
will have a look to see what I can come up with in terms of testing post injections but this article discusses the use of normal range in relation to diagnosis and quite clearly states the limitations of using it
It also provides quite a good explanation of how B12 deficiency works which might help your GP understand that it really isn't about the levels in your blood.
The BCSH guidelines also mention that people can be deficient well into the normal range and that testing of serum levels is not required in relation people who are being treated for absorption problems
I plan to join PAS to get some help with my letter too. All advice welcome at this stage. I have found a London clinic that will do b12 injections for 50 quid a time. Although I could theoretically afford to do this I feel I need to keep fighting - if we all just gave up and went private then nothing would change.
yes and my boyfriend says he will do this - although he does say it will be a piece of cake as he grew up on a cattle farm and is used to giving injections - which didn't please me much!
On a more serious note please be grateful (I'm sure you are) that with that background he will be positive about having a good quality of life and supportive of any treatment needed to achieve it.
Many poor souls not only have to deal with their problems but their families are actively against them self injecting and supplementing.
On the other hand I'd rather do my own jabs than let him (or anyone else, for that matter!) do them and now actively encourage more careful injecting of animals!! 😁
You could self-inject for £1.00 a time , buying in bulk . Of course we want to keep fighting but if one’s health is deteriorating , and symptoms are turning into irreversible conditions , something has to be done. It is going take years for P.A.patients to get the correct treatment . I’m sure it will happen . At PAS ,we will never give up , but you need good health to persist , and we can only have that ,if we are treated adequately . So it means D.I.Y. very often .
Heehee. Although if I was a cow I wouldn't be worrying so much about my fading memory and I wouldn't be imagining bugs crawling on my face because they would be real!
Re. 'pointless retesting' after treatment has begun, I've just this minute answered another post on here re. what seems to be a very common problem on the forum:
BMJ research document summary only (GP would probably able to access the full document):
It states that there is NO reliable test and, most important, (bottom of page 4 ' under, 'How is Response to treatment assessed' ), once b12 treatment is started, further blood tests are not needed as they do not reflect how effective the treatment is or whether B12 is absorbed into tissues.
"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."
The document also contains information regarding frequency of injections for neurological symptoms :'every other day until no further improvement (British National Formulary) - particularly important as, the more severe the symptoms, the longer it takes to recover, particularly if they're neurological.
This Dutch link also re. Importance of adequate treatment:
The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately."
.......................
Good luck HCC2
PS Just to reinforce the importance of adequate treatment, it has taken me personally almost a year of self injecting every other day, and the last two weeks of injecting every day, to finally feel normal 🤗
Search on the internet and you will get their website £40 in you'll get your B12 active test done and you'll have to get a a registered haematologist to take the Bloods I got mine done for free by my GP try and stay off the B12 injections for a week or as long as you possibly can then take the Bloods send the Pack back by post prepaid
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