My new gp (yet another) said she will do a 'trough' blood test 3 weeks after my injection ( as this is when my symptoms a getting worse). She said that if my b12 levels have not dropped it will show that I am absorbing the b12 through my injection and my symptoms will be due to something else. Am I right in thinking this is a waste of time?
Trough testing?: My new gp (yet another... - Pernicious Anaemi...
Trough testing?
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52 Replies
•
You are right. A total waste of time and money. When will GP's get training in B12D? You could try printing off articles showing this but my GP refused to read them saying he was too busy.
• in reply tocharks
They have also started only prescribing one ampoule at a time and contracting out my injections to a treatment room; so every injection entails a call to the surgery; queuing at the chemist (at least 20 mins every time as all prescriptions are only for 28 days so it's really busy), collecting and paying for my single precious ampoule, half an hour on the phone trying to book an appointment at the treatment rooms, and then travelling 5 miles each way to get my injection!! By that time I am ready for another 😐
charks• in reply to
That's ridiculous. I estimate I am 90% better but it would never have happened if I had relied on my GP. I think you will be forced to SI in the end if you want to be able to live a 'normal' life. It sounds very daunting. I am lucky and can take oral B12 ( massive doses absorbed via passive absorption). But lots of people do it and all the advice you need is on this forum.
• in reply tocharks
I have been SI since early 2020; I would prefer to have this supported by my gp but this is never going to happen it seems.
B12life• in reply to
My doc still supports it, but the pharmacy gave me hell so I just get things on my own.
If you are meat eater, ask them why you were low in the first place while eating meat and how then if there is no understanding of causation will it resolve? If the underlying cause is not addressed, then the problem is there and most likely will be there until indefinately until the problem is solved. That many faces document explains that b12 can't be tested during injections and therefore the need for injections must be based on symptoms. Read that article, prepare yourself to argue every excuse that may be used to stop injections or rather prepare to answer in every angle possible why you need them.
Nackapan• in reply to
Yes I had to change this for my mum who got one at a time.
I also changed mine as although got 5 wax on every othef dsy at the time .
A prescription charge for one ampoule ridiculous.
The time booking each injection doesn't change as not able to book ahead !
• in reply toNackapan
The whole thing is completely crazy; we were moving towards more autonomy a few years ago but now they seem to be not allowing people to manage their own health at all. I think they are hoping we will all go away.
JanD236• in reply to
I would think that testing after your injection will be a total waste of time.
As you are si, I assume you are doing this around every 2 weeks in order to keep the symptoms that return at 3 weeks at bay?
I feel so sad about how your surgery has treated you, making you go through so many hoops to receive an injection. Surely a complaint to the practice manager is warranted?
• in reply toJanD236
It is the new policy across the area apparently. I have told them how difficult they are making it and the stress this causes but this has not got me anywhere. I also emailed and spoke to the practice manager bit got nowhere. It is very disappointing.
FlipperTD• in reply to
is it time to arrange a surgery visit to your MP's surgery? They may be interested. Or not...
If everyone on here who is having GP issues arranged MP surgery visits, I wonder what might happen?
Good luck.
• in reply toFlipperTD
A good point, thank you.
My local MP is an arch tory who would vote for things that would make it harder for all of us. He's very happy to swing the axe of austerity and the managed decline of the NHS.
My MP is a a member of the Conservative party too. He is incredibly supportive and trys hard to encourage the NHS to be patient centric and to support people who wish to manage aspects of their health care.
I'm from the US. what is an MP?
We elect MPs [Members of Parliament] and they are our representatives in Westminster. There are 650 elected for the UK Pariament, and they serve a term of [typically] five years. They hold 'surgeries' where the members of the public can arrange to see them about issues, and these surgeries are, I believe, weekly. The MP can then raise issues on our behalf. If every person suffering from PA and having difficulty getting treatment were to raise the issue with their MP through the surgeries, it might stir the pot a bit!
I did contact my MP who entually contacted NICE who advised him that they were in the process of updating the Guidelines. Full stop! So we continue to wait and hope.....
• in reply toBaggy8
That's good to know; great that your MP was willing to help and still hope that NICE are going to change the guidelines.
that's why I create a summary page with the key points (1-2 liners). then highlight the references to them in the actual doc. They are busy. Know your audience. Even then, if a doc doesn't want to listen they wont, but at least this gives them no excuse.
Only give them one document at a time. I use the many faces because it covers all the misconceptions.
ncbi.nlm.nih.gov/pmc/articl...
I write this not to criticize but to help others find ways to approach the doctors.
My husband injects my B12. I feel like I need them every 3 weeks to keep my toes from getting tingly again. It is so much more convenient than going to the doctor to get an injection. Especially when I am skiing and not any where near my doctor.
• in reply toHockey_player
I si every 2 amd a half to 3 weeks but the pins and needles have never gone away. I was diagnosed in 2017 so ot seems I am stuck with this.
Dilly_blue• in reply to
Every few weeks for SI might be enough to get your levels up, but you need to flood your system for a period of time to resolve neurological symptoms (as far as they can be resolved). Medical guidelines recommend every other day until there is no more improvement - apparently this can take up to 3-6 months, even longer. NHS will only give you 6 loading doses over two weeks, which isn’t enough.
• in reply toDilly_blue
This is definitely what happened to me; loading doses the straight to 3 monthly. I had to then beg for 2 monthly which I am still on.
I despair! I'm hitting week 7 of EOD loading doses (SI) and wondering when or if I'll ever manage to shake most of my debilitating symptoms off 😭
Lincsangel1• in reply to
Neurological symptoms require much more regular injections than 2 to 3 weeksAfter an injection the excess is peed out within 48 hours... that's why NICE guidelines state that for treatment of B12 deficiency with neurological symptoms 1ml hydroxocobalamin every other day till no further improvement
Undertreatment can result in irreversible neurological damage
• in reply toLincsangel1
It's really difficult to get the gp to understand this, especially after 5 years of treatment. I hope all the work by the Pernicious anaemia society with NICE will come to fruition soon; that might help.
B12life• in reply to
I had pins and needles and then numbness. I injected EOD for 2 years. It's gone. Every one is different, but I would suggest trying to inject EOD and see what happens.
Start buying your own supplies.
Given the obstructive intransigence and sheer absurdity of your GP practice I would suggest getting an appointment with your MP to see of they can help. And self inject, buy B12 from Germany. I feel so much better having bought 100 ampoules from Germany with a long use by and know my supply is secure for 2 years. I inject sub cutaneously every week, apart from my one NHS every 2 months and private shot every other two months.
• in reply toOrchard33
Do you think the mp could help? I had considered contacting them but was not sure if they get involved in medical provision. I did want to raise the issue of 28 day prescriptions which my local authority area has signed up to (hence the one ampoule) I can understand this policy for new or short term medications but its absurd for someone on lifelong treatment.
Orchard33• in reply to
I think your MP is definitely worth a try. I'm considering it myself even though I've found a way round NHS obstruction with regard to adequate PA treatment.
Mixteca• in reply to
There will be a local MP somewhere willing to help. Many are of course not that active but the activists/campaigners on other issues would be a good bet.
Same here! Works for me. Occasionally like for instance after having had corona for 3-4 weeks now, I have started loading injections to help to energise myself. It’s working.
I'm on a very similar regime .Sc then IM every 6 weeks at the surgery.
I do get a prescription for 2 weekly b12 injections .
Do you find the IM ones ladt longer.
In theory they should but I don't find they do ??
I do notice it going in quicker .
I've been on this regime for over 2 years now
Still plodding on with slow improvements
I also feel so much better with buying it as well .
As booking the 6 weekly one can be precarious/ difficult .
So often late !! Due to booking system
Can't book ahead.
Finally get through by phone 2 weeks before due . As requested .
Then no appointments
At times no nurse
Retired nurse helping out at present.
I wrote to my mp
'Blanket reply '
My obviously not read it.
Letters to practice Manager.
No reply .
Some things just actioned
Like reinstating prescription.
It takes do much precious energy .
I can't believe your NHS shot is so hit and miss. That must be very anxiety-making.My progress is slow but, after a false start last year when I had to repeat loading shots because I was going down hill with only 3-monthly, I put together a weekly regime which made a substantial improvement. I'm reckoning on another year of adequate treatment before everything stabilises. This will include further tests to check out possible stomach damage after 20 years of H2 blockers followed by PPIs.
I've also come to think that the longer standing the B12 deficiency the longer stabilisation takes. I had macrocytosis in 2015 but it wasn't picked up by a GP. That means that deficiency pre-dates 2015,perhaps by as much as a decade. Who knows?
Yes I agree.Mine was missed ...well not even tested for 3 times when I went to the Gp.
I presented with;
Fatigue I'd never felt before.
Giving various descriptions.
Loje a invisible rope puking ne backwards whist cycling / walking
Vision problems
Falling over
Paranoia
Short memory problems
Constipation
I was told stress and the menopause .
The trigger I think
I hadn't been to the gp for 7 yesrs .
Still no 'red flag '
Never had b12 tested before .
Not thinking clearly enough to try and work put what to ask for.
I thought iron deficiency!!
Having not had it before and on no medications hard.
It tool a very bad fall.
Then a few weeks later a collapse and vertigo to get tests!
I also got every other day started again 5 weeks after loading as so ill at the start.
Just to be clear.
I also bought some in lockdown ax anxiety was there over not getting my injections . A neurologist had written to my gp.
I have regular weekly b12 injections .
A NHS prescription for 2 weekly.
I do most at home sc.
I go in theory every 4-6 weeks for an IM one. ( no nurses booking system ect makes thus difficult)
Once a regime has been set I stick with it . So glad to do them at home to achieve this.
Have tried topping up with high dose oral b12 to no effect.
I tried 2 weekly for over a year .
4 yrs 4m in still making slow progress.
I was originally hoping for a monthly regime .
Had no idea about the rollercoaster.
I've found pacing very difficult .
Old habits of finishing things I start.
Pushing through .
Don't work.
I wish you well .
Yes time is needed with regular b12
I so agree about pushing through. It really sets me back and is so demoralising. Staying within my limits is the key for me.
Please don’t disregard the comments about it being something else.
I’m someone who has multiple issues and they all have very similar symptoms, it’s taken four years and many tests. To finally find all of them.
Unfortunately they all seem linked to a lifelong b12 absorption problem confirmed as PA. Last year.
• in reply toScott-rock
That's really helpful and I agree; it is finding a gp who keeps digging and does not just rely on basic tests before writing me off again. I'll take your advice and see if we find an answer this time.
Do you mind telling us what the others are because if the symptoms are the same, maybe many of us should at least get them ruled out as well.
I also have a b1 deficiency and it had some of the same symptoms as b12.
I was diagnosed with primary hyperparathyroidism (normohormonal variant) and hypercalcemia . Improved after surgery.
Then hypogonadotrophic hypogonadism (male hormone deficiency, male problem) requires testosterone replacement therapy.
Then pernicious anaemia etc.
Then severe cervical degenerative disease and stenosis with the same in my lumbar spine.
Finally MGUS monoclonal gammaopathy of undefined significance. Caused by a bone marrow issue where it over produces one antibody, which has a 1 in 5 chance of progression to multiple myeloma over 20 years.
The interesting thing is, that they all can be linked in one way or another to the bones and calcium and each other.
wow Scott! That's a lot to deal with! Thanks for sharing, I hope others can get insight from this.
I have a friend that uses boron instead of testosterone as he believes the underlying problem is a boron deficiency. Not to say it will work for all. but for those that want to try.
my testosterone problem is hormonal balance which stops me making it.
yes. then boron will not work.
Very true.My daughter ditto.
Took many more years of trsting unfortunately 😕
I'm still open minded and insist on regular blood tests.
Thyroid on them by gp
If you have a test 3 weeks after your injection, after your symptoms have returned, it will most likely show that your B12 levels are ‘normal’ or ‘high’ (serum B12 and active B12, if they do both of those tests), but I doubt they will test your MMA / homocysteine levels. I have an autoimmune B12 deficiency, and I also have a functional deficiency (where my body struggles to transport the B12 to the cells, once it is in the body), and my symptoms start returning after 5 days following an injection. What I wanted to say was that a few weeks after an injection, my B12 levels (either serum or active) are still ‘sky high’, but my MMA levels are still raised, which shows that I have a B12 deficiency at a cellular level. I suspect that functional B12 problems are a lot more common than anyone suspects, and I think they occur in tandem with a different type of B12 deficiency.
So, if your doctor is going to test after 3 weeks, they need to test the MMA levels and homocysteine levels, as those will show if it is getting into your cells. Be prepared for your GP never to have heard of a functional B12 deficiency, I have seen a number of (often senior) GPs, who have never heard of it, and don’t understand it.
Testing B12 at that point is a complete waste of time (which is recognised in all of the medical literature and guidance). Try and find copies of research and guidance that says this, and take it along to your GP. If you are in the UK, it is probably unlikely that a GP will be able to refer for MMA or homocysteine testing anyway (this usually has to be done through a hospital) - which is yet another problem for patients… It is worth asking your GP though….
• in reply toDilly_blue
Thank you, I will ask them to order those tests. I thought they meant more in depth tests when they said 'trough' , but clearly not
This is cool. I've been wanting to hear someone's MMA testing experience.
…I meant ‘they CAN occur in tandem with other types of B12 deficiency’…
I concur it is a waste of you time and effort.
I found it very helpful to work with someone who was dealing with their GP with regards to B12 deficiency. I was through out the process able to give them the documentation of what should be done. (Thanks to those that write here.) I was able to give a best case scenario and a most likely scenario. Unfortunately I was accurate. I could not give an explanation to the GP's behavior nor do I expect to ever have one.
They came to the conclusion that it was best to self treat and continue working with the GP for any other issues that the GP might be able to help with.
I was not able to help with the frustration, anger, feeling helpless, angst, confusion etc.
They did have the advantage of knowing me before and after I started self treatment so they could see the possibilities. .
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