I'm currently on my loading doses and have a sneaking worry that my treatment/investigatons into PA aren't as efficient as I'd previously thought - I'd appreciate some advice as I sometimes find the clinical information online very complicated/contradicting.
Firstly they will only give me 4 loading injections rather than 6 - I've asked two nurses and the GP and they all say they give 4 to anyone around the borderline level (I was 180 for b12). I tried quoting the NICE guidelines but they say that's the trust's policy. I cannot find anything about this online for East Kent Foundation Trust. Will this badly harm my chances of loading up enough b12? I do feel better after only 2 doses - I feel like I have more energy and can think clearer with less adrenalin/anxious feelings and my peripheral vision disturbances have stopped, but then I don't know if there's an element of placebo as I am early in treatment.
Also, the doctor said I needed to be tested for intrinsic factor antibodies and I think MMA which was initially promising. However, they have given me a form for purple and gold top blood tests which I must have 2 weeks after my last injection. I know nothing about phlebotomy but I think those are usually for full bloods aren't they? I'm concerned they are just testing my total b12 levels which will be high anyway having been given the loading doses, and are not doing the tests I'm supposed to have for PA. The receptionist wouldn't tell me what I was being tested for.
Furthermore, I found something on the Gloucestershire Hospitals trust website that says it is not possible to test for Intrinsic Factor antibodies when someone is undergoing b12 replacement therapy. I know from this forum that Gloucestershire has a terrible track record with b12, but does this mean I should have had the IF test before starting injections?
It is possible I'm being unduly anxious as I have a bad history with being listened to, so if anyone has any thoughts I would be very grateful. Thanks as always.
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franrose
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I also thought the IfA test should be done before loading doses. Mind wasn't done I didn't know at thd time what it was
. They dud the parietal calk anybody test before loading doses . Not used to diagnosed PA in isolation.
Never did thd MMa test either.
Its been said on here with the latest lab equipment which thd NHS should havd not oved 10years old its be fine to do IFA test 2 weeks after b12 injection.
Usually folate done at the same time as b12 and if yiu need folic acid its right to have b12first.
Also iron ferritin
Vit D
Coeliac disease
And thyroid tests done .
Get a copy of your blood results.
Also ask what is requested on your blood form again for next time.
Some are paper some electronic.
As for the loading doses I've never heard of ' borderline ' being treated any different.
Infact if any neurological symptoms every other day is in thr guidelines to continue until no further improvement.
Great your had a good response 👍 so much better to start treatment in time rather than waiting.
I would query the 4 loading doses again in writing .
Thank you very much for the advice - I will have a look into these suggestions. It sounds like 2 weeks post jab will be ok according to another poster but I think it's a good idea to query the 4 injections. Thanks again
You may find the info you need if you look at the website for the CCG that covers your area which I think is Kent and Medway CCG (Clinical Commissioning Board).
Guidelines were originally developed by Swale CCG which no longer exists and is now part of Kent and Medway CCG.
I've assumed that they now apply to whole of Kent and Medway area but I could be wrong.
They were due to be reviewed last year but I'm not sure if this has happened.
To track down local guidelines for your CCG/Health Board
1) try a search of forum posts using terms "local guidelines" as some have been posted in past on this forum
2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines. Put FOI in search box on CCG/Health Board website which should take you to a page that explains how to submit a FOI request.
4) it's also possible to submit a FOI request to your GP surgery asking for access to or a copy of the B12 deficiency guidelines they are using.
They are probably not going to be happy about this but you are entitled to submit a FOI request. Put FOI in search box on GP surgery website which should take you to a page that explains how to submit a FOI request.
5) local MP may be able to help you locate the guidelines
"I tried quoting the NICE guidelines"
I think it's worth putting queries about treatment into a letter as harder for GPs to ignore.
Thank you for these links, you are always a goldmine of information. I will focus on trying to find the guidelines for my area, I think you're right that I come under Kent & Medway. The area where my GP practice is located is very deprived and there is a lot of alcoholism unfortunately, so I wonder if they are more used to treating dietary b12 deficiencies rather than PA. I will definitely go down the FOI route if I get no further with online research. Thank you very much again.
What has your GP said about stopping injections beforehand?
I am not medically trained so can't give medical advice.
If you access your medical records, you should be able to find out what tests have been ordered.
My understanding is that results for MMA, Homocysteine, Active B12 (holotranscobalamin) and serum (total) B12 tests might be affected by recent B12 injections, B12 supplements.
On right side of this diagnostic flowchart from BSH Cobalamin and Folate guidelines, it suggests that patients who show a good clinical response to B12 treatment (meaning their symptoms have improved) could continue on the treatment even if secondary tests such as MMA and Homocysteine have normal range results.
IFAB is a test for PA as the specific cause of a B12 deficency. It can be done after starting loading doses but doing it too close to a B12 injection means it is prone to false positives. 2 weeks is sufficent time to avoid false positives.It won't have any effect on the high incidence of false negatives because the test isn't very sensitive. It gives false negatives 40-60% of the time depending on the exact test being done.
The info about the IFA test is useful, thank you. I'm still none the wiser if the blood tests I'm being given are to investigate PA or to check b12 etc, but I suppose at least I'm being treated. The GP definitely mentioned two different types of test that he would give me for PA, I thought one was MMA but maybe it was parietal cell. Thank you again very much for the info.
Sorry to hear what you are going through. Others have answered the most important questions. Receptionists aren’t the best to ask about which bloods. So, from a clinical point of view :-
1) Politely ask the phlebotomist what bloods they are taking.
Have your handbag on your lap. (It’s an automatic defence) . Then put your bag on the floor or wherever, because once you roll up the sleeve of your clothing and offer your arm that is implied consent.
2) There are only a limited colour of bottle top colours so, forms have to be written on. For example the gold top can test for a HUGE variety from toxicology (recreational drugs), oncology, vitamins etc.
Thank you this is really useful info - I had worried when I saw the purple and gold bottles on the sheet, as that is what I always seem to be given when they want to pack me off. It's good to know that still could mean I'm getting the IFA test. I will definitely try the handbag trick too! It's so hard to speak to my doctor and the receptionists gatekeep all the info so I feel a bit in the dark about what's happening, and I feel that I have to gain a good understanding to push for the right care. No one else is going to advocate for me I don't think!
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.
If your IFA (Intrinsic Factor Antibody) test result is negative and they say that you can't have PA then worth passing them info about Antibody Negative PA (see link to BSH diagnostic flowchart).
Martyn Hooper, chair of PAS tested negative on IFA test more than once before testing positive.
If you have any blood relatives with a confirmed PA diagnosis, worth mentioning this in conversations with and letters to GP as PA is known to run in families. Worth mentioning any family history of coeliac disease or other conditions that can lead to B12 deficiency.
From personal experience, seeing a specialist is no guarantee of better treatment as sadly some specialists are lacking in knowledge about B12 deficiency and PA.
The CCG group guidelines are what you require. If they are the ones Sleepy bunny showed for Swale then with B12 180 ng/L, you would be deemed as normal for B12.
Which guidelines from NICE were you referencing? Do you have a link?
It is crazy that every CCG has different guidelines. It keeps a lot of people employed updating them, though it is a shame the could not use the money to do more useful things
I do not know if it is correct, but I has my IFAb test done at same time as my loading doses
Thank you for your reply. I very much agree there should be a national uniform decision on the guidelines!
The lowest normal value from the lab on my blood test paperwork is 189 ng/L - the range was 189-883 ng/L. I had 180 ng/L, making me deficient according to that lab. That was from the blood lab at East Kent Hospitals Trust. I don't know why the CCG guidelines say different.
When diagnosing me the GP also acknowledged that these ranges were misleading as it is a total b12 and not active, and that different people need different levels. He was happy to provide treatment, but still gave me 4 doses instead of 6. When I asked the nurse why only 4, she said that is what they do with "borderline" cases.
The Nice guidelines I am referring to are in relation to the number of injections I am supposed to have, not a specified range of active b12 which I don't think they provide. They state that you should be investigated for PA regardless of your score if you have megoblastic anemia and through looking at your history, having certain examinations and investigations. My grandmother had pernicious anemia and I also have high MCV and MCH above the boundaries for many years, declining white blood cell counts across a year of tests as well as gastric symptoms. I also had tingling in my hands, a bit of brain fog and peripheral vision flickering which I'm not sure if would be counted as neuro symptoms. I guess this is why I am being treated and investigated for PA despite having a "borderline" level.
These links were given to me by SleepyBunny on a previous post:
To make matters more confusing, on my NHS app, under medications (the only bit of my medical records my practice has given me access to) it says I am supposed to have 5 ampoules which I assume means doses? Screenshot attached.
I had forgotten about every lab having different ranges. I do not understand that, and it obviously further confuses things.
With all your other history and your familiar history I can see that B12 should is certainly warranted. In fact normally with the guidelines I think that if neurological symptoms you should continue with treatment of B12 until these symptoms go.
Seemingly they may now have done the IFAb test and you are waiting for the result?
You could also try some sublingual lozenges which are absorbed in mouth. These are the ones I tried naturesfix.co.uk/product/hy... I had half first thing in morning and half mid afternoon
I was also given 5 ampules. I did not bother arguing it
Also you may have seen they should give you a blood test at FBC at 7 to 10 days after starting treatment and again at 2 months FBC plus ferritin & folate levels. Given your blood results show symptoms there I think this is a really good idea
For my treatment I got the first blood test done, but they would not give me the second one since they said my first test was fine. I should say I was also boarder line for my b12 test at around 158 or 162 ng/L and 160 was the cut off for be deficient. My main symptoms were close to passing out tiredness at strange times and disturbed sleep
It is terrible that it is a postcode lottery as to whether you get treated. The flowchart on the Kent & Medway guidelines also seems to suggest 145 ng/L is borderline which seems so low. The guidelines barely mention PA. Thank god for the information on this forum and the PA society! And that my doctor knew that the total b12 score doesn't always correctly show deficiency.
I went to the nurse today and showed her that my NHS app medical record said I needed 5 ampoules for loading, she checked my notes and I am definitely supposed to have 5 injections, not 4 as they told me and booked me in for. There were no appointments til Tuesday so I will be stretching out the 2 week guideline by a few days but at least I am getting an extra jab. She also thinks my PA investigations will be within the blood tests they've asked me to get in 2 weeks, so fingers crossed that is the case!
Thanks for the recommendation on the lozenges, I will look into those and chase up the second FBC blood test in a couple of months!
It sounds good they are giving you the first blood test as a matter of course. And also that you are having 5 injections which I am sure is fine, at least a good start. And do not worry about spreading them out. Personally I had them one a week since it was more convenient plus I feel body takes times to absorb and store the B12. Just my theory. Still in US and other places they tend to have injections at one a week. However you are having neurological issues so probably best to flood your body with B12 as you are doing
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
As these new guidelines may influence treatment in local areas of UK when published, I think it makes sense to keep an eye on them.
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