Last week I posted about a letter I received from my GP practice telling me I was ‘borderline’ deficient (my level was 121)
Anyway, today I finally got to speak with the GP who wrote the letter. She told me that earlier this year, the guidelines changed. People with a reading <115ng/L will still get the quarterly injections. Those >115ng/L but <150ng/L will be monitored with blood tests every six months and advice about diet and medication.
As I had questioned the letter - and my last injection was in February - I am having my blood test next week.
Thanks to Nackapan (I think it was) I knew to ask about intrinsic factor which threw her a bit. Apparently they don’t normally check for that but, again because I asked, they are going to do that too next week. So, watch this space ...
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MissKota
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Yes, the 121 was from last year. When I suggested a blood test previously to check if the loading doses had made any difference, I was told, by the same GP, that it was pointless doing a blood test once you’ve had the loading doses as it can stay in you blood for a long period.
If you haven't already done so, you could think about putting your concerns about treatment in to a letter to GP.
In UK, my understanding is that letters to GP are supposed to be filed with medical notes so less likely to be ignored in my opinion.
Keep copies of any letters written and any replies received. It can be useful to have a paper trail in case you need to make a formal complaint in future. Useful if you can prove you raised any relevant issues.
You could draw GPs attention to the possibility of permanent neurological damage including damage to spinal cord (SACD) if you are untreated or under treated in any letters.
You mentioned neurological symptoms last year so that should be a warning sign to GP to be careful with your treatment.
Do you have any symptoms affecting any part of your back/spine eg
numbness,
tingling,
sensations of water dripping,
electric shock sensations,
insect crawling sensations
back ache?
Do you have any balance issues eg
bumping into things
falls/tripping over
problems with your gait ( strange way of walking)?
Any symptoms suggestive of proprioception problems?
Proprioception sense is a person's awareness of body in space.
A person with proprioception problems may have balance issues when
it's dark
eyes are closed
view of surroundings is blocked
I used to fall off the pavement when someone walked directly towards me because my view was blocked.
Clumsiness can sometimes be a sign of proprioception issues. I used to misjudge where things were when I reached for things...with smashed crockery as a result.
Has a neurologist ever tested your propriocepetion sense?
I would expect them to do at least some neurological tests where your eyes are closed eg
1) romberg test
2) walking heel to toe with eyes closed
Vital that these tests are only carried out by a doctor at medical premises as someone with proprioception issues could fall/lose balance.
Videos of proprioception tests on Youtube.
Search online for " proprioception B12 deficiency" if you want to know more.
I suggest you give GP a list of every symptom you have (or had last year) especially every neuro symptom. Include any that you have noticed returning since treatment changed and any new neuro symptoms that have appeared.
"I knew to ask about intrinsic factor which threw her a bit."
As they are going to test Intrinsic Factor Antibody test, might be worth joining PAS if not already a member as PAS can pass on useful info and offer support.
Flowchart outlines a process for diagnosing PA and Antibody Negative PA in UK
"People with a reading <115ng/L will still get the quarterly injections. Those >115ng/L but <150ng/L will be monitored with blood tests every six months and advice about diet and medication."
I suspect your GP is being constrained in what treatment they can offer due to local area guidelines.
If you haven't already I suggest you track down a copy of the local guidelines for treatment of B12 deficiency in your part of UK and compare them with BSH guidelines, BNF info and NICE CKS info.
Have a look at the 99 comments left under the article if you have time.
Your GP surgery should be willing to provide you with a copy of the treatment guidelines they are using or at least tell you how to access them.
If they are reluctant you could use a FOI request (Freedom of Information) which I think would need to go to practice manager.
Being an assertive patient can affect patient/GP relationship so be prepared for relationship to turn sour and have an alternative GP surgery in mind if possible.
"Those >115ng/L but <150ng/L will be monitored with blood tests every six months and advice about diet and medication."
Being these days an "awkward" patient, in a similar situation I would point out that this sentence assumes that the deficiency is due to diet or medication and does not consider the possibility of absorption problems in gut.
I would ask my GP what happens to the people with undiagnosed PA, Coeliac disease, H pylori infection, fish tapeworm infection etc who have results between 115ng and 150 ng/L?
Six months with untreated PA etc could be enough time for spinal damage (SACD) to occur.
I'd probably stick a diet sheet with a typical weekly diet showing I eat a b12 rich diet under GP's nose. I'd also write a letter to GP which included the diet and a statement from me saying the deficiency was not diet related.
Apologies as I probably asked in the past but have you been tested for Coeliac disease?
UK NICE guidelines Coeliac disease suggest anyone with unexplained B12, folate or iron deficiency should be tested.
Your levels of b12 can be normal or high even with the nhs b12 Test. This is because it measures total b12 not active b12. You’d need a private blood test for active b12 from a company like Medichecks but I’m betting you would be much more deficient that your existing blood test reveals.
both serum and active B12 just measure the amount of B12 in the blood. Active B12 is generally 1/5 of total serum B12. Whilst it may be a more accurate test (serum B12 is only accurate to about 20%) I wouldn't waste my money on getting a private test done for active B12.
Both serum B12 and active B12 are useful for showing if there are any downward trends over time (which would be indicative of an absorption problem). People tend to maintain levels of serum B12 and active B12 at a point in the normal ranges which are appropriate for them using stores in the liver but this stops functioning if you have an absorption problem with the results that levels start dropping. This makes both quite difficult tests to interpret from a single point result.
MissKota - you really need to push back on where the 'new standards' are coming from - they aren't in accordance with any national standards in the UK that I am aware of. There have been some rather confusing and inaccurate statements during COVID-19 which have been far from helpful, assuming you are in the UK. US doesn't have any national standards and things can be extremely it and miss.
This is a link to the latest BCSH standards regarding treatment during the pandemic
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