HI my wife is 73 years of age and was diagnosed with pa about 20 years ago after many, many visits to our Dr. It wasn.t until our regular doctor was on holiday and she had to see one of the partners did she get sent for a blood test and was diagnosed. Since then she has had regular B12 injections. First every 8 weeks, then a trial of every 12 weeks but finally it was settled at every 10 weeks.
Just after Christmas this year we received a letter from our doctor informing us that after being with their practice for over 25 years we are no longer in their area and had to find a new doctor. This we have done and my wife recently had a blood test 1 week and about 3 days after having her B12 injection. The results showed her B12 high and the doctor says she no longer needs B12 injections.
I don't think this is right and I don't want my wife to go through all the symptoms she suffered before. Any suggestions would be greatly appreciated. I
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granvilleS7
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when her symptoms start to surface again you should go in with a lust of symptoms and her records will have caught up with her new Dr.. Take in any info or donate a b12 book on symptoms lead practice, point to her last agreed treatment and explain why it's important she stays on it... Educate them on the facts once treatment has started readings in blood are not reliable... There isn't a lot more you can do but politely educate, refer to past successful treatment plans... If you still have issues join PAS who will take it up for you... 😊
That's what I mean, they have had loading or some sort of plan this needs to carry through if injections are not at the interval's agreed at last gp... However if a new GP the notes may not have caught up... So as I said get the books or notes and guidelines here and take them in...
I never had a plan so nothing will be handed over . The good new after 26 years since I’ve seen neurologist is still at the Macmaster clinic o did research and I want my file
granvilleS7 In most cases a B12deficiency is an absorption disorder and treatment is for life. (unless the cause can be resolved) Testing for B12 during treatment gives no information, the B12 shóuld be (really) high. Scietif info for the dr: stichtingb12tekort.nl/weten...
If it is mainly an absorption problem I have a Gastro appt Oct that will then probably go onto the camera, if say leaky gut is diagnosed do they stitch it up? For the posters and anyone looking, how is absorption fixed? (I.e. Are injections the only way through?)... Thanks... It maybe fixing absorption will help... You are better off than you realise, as you have had a plan that worked, you just need that to carry on... If you can compile your lists of what the person started out with what was helped by keeping the injections at x intervals (A timeline even if rough) they can't really have a problem with that..print off the fb docs re how futile testing is after.. 😊
As you mentioned absorption problems being a reason a lot of folk have b12... I was wondering if in this case Graville is asking about, or possibly mine, what do they do to solve not absorbing?
ah..there are some causes of a B12 deficiency that can be resolved. if parasites are the cause, it can be treated. An infection with helicobacter (stomach bacteria) can also be treated, although that is not always succesful. In coeliac cases it's possible the intestine heals enough to absorb again. And if it's because of the use of certain medication, alternatives can be sought.
Really helpful thanks😊... I'd imagined leaky gut and things like that involved major surgery, so this is helpful... Hoping Granville gets answers too, and if absorption this can be investigated.. Thanks
ok... Yes, I'll wait to see... Funny what a name can lead you to think... Great for Granville and I to know that absorption needs investigating and taken seriously 😊 thanks again
Notes can take a while to catch up... But not months... And because b12 is not cocaine it should be simple to get in the interim... If they want to start from scratch do the timeline I mention above and print fbirder great stuff off re futile testing after treatment and join pas who can really wade in if all that fails... 😊
Have you thought about joining the PAS (Pernicious Anaemia Society)? In some cases the PAS may be able to write letters on behalf of members. It's possible that there may be a local PAS group close to you.
PAS office is open from 8am till 2pm except Sundays.
My understanding is that once diagnosed with PA, injections are for life. This information can be found on
1) Page 8 "BCSH Cobalamin and Folate Guidelines" has info on UK B12 recommended treatment. Page 29, a diagnosis flowchart also mentions lifelong treatment for PA. I gave a copy of the BCSH Cobalamin and Folate guidelines to my GPs. its easy to find "BCSH Cobalamin Guidelines " with a search on internet.
2) BNF (British National Formulary) Chapter 9 Section 1.2 Your GP probably has a copy of the BNF on their bookshelf. It is possible to get your own copy.
I also gave my GPs a copy of "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper as this is up to date with current UK guidelines.
Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage. The "Pernicious" in pernicious Anaemia means deadly or fatal.
Does your wife have any neurological symptoms? see links to B12 deficiency symptoms lists below. If she has then my understanding is that injections should be every 2 months not every 3 months. Info about this on page 8 BCSH Cobalamin and Folate Guidelines.
"My wife recently had a blood test 1 week and about 3 days after having her B12 injection. The results showed her B12 high "
fbirder has a summary of useful quotes from mainly UK B12 documents. You can find this by clicking on the second pinned post titled "Information about b12 deficiency from Stichting B12 tekort and the B12 research Institute" or by clicking on the link above to fbirder's profile page. One of these quotes makes it clear that testing b12 after someone has started supplements is irelevant.
Some GPs find it difficult when their decisions are challenged. In teh past I have written polite letters when unhappy with treatment as this avoids face to face confrontation. Thank goodness your wife has you to support her.
A couple of people have mentioned my summary document. I'd just like to point out two of the relevant quotes from scientific articles -
In irreversible cases, for example, pernicious anaemia, the treatment should be continued for life. For temporary causes, such as pregnancy, the treatment can be reviewed when the patient is fully replete and the causative agent removed
and
Ongoing monitoring of people being treated with vitamin B12 or folic acid is generally considered unnecessary (unless a lack of compliance with folate treatment is suspected, or anaemia recurs).
It may also help to send a copy of the latest BMJ research document - see Bottom of page 4 -
"How is response to treatment assessed?
Homocysteine or methylmalonic acid should normalise during the first week of treatment. Failure to do so suggests an incorrect diagnosis, unless renal failure or other causes of increases in the metabolites coexist. Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not required."
please feel positive you have many things in your favour and many great suggestions... The biggest being that b12 is not being stopped because of cost like say t3 is... It's hard to feel positive when going through this, but it only makes you more ill if you start feeling defeated... Some of us self treat because we couldn't get a plan good enough to start with.. I do it cause I can't be bothered to fight a moron that won't educate himself, plus I don't have the time to sit in the germ filled surgery waiting room... Ultimately, we are all lucky we can get supplies and get past self treating... So if you have had a plan that works your last hurdle is getting a GP that wants to keep you well... That's the phrase you need to put to them... They are entitled to test, but they have to know the limitations of said tests... Hugs 😊
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