It took years for my adult son to get a correct diagnosis and it was PA , injections for life he was told.
Such a relief, he was lucky to get back to almosthow he had been before becoming so I'll.
Now he has moved, new doctor tested B12....result high ( surprise surprise ) no more injections needed.
Son strongly queried, doctor reluctantly agreed to retest in three months. Results still high, no more injections needed.
He is by now seriously unwell again but reluctant to self treat as he doesn't want to be taken off the GP,s register.
We have five generations of PA, Hypothyroidism, Diabetes, MS etc on my side of the family and I self inject weekly whilst still having my NHS injection every 8 weeks. I could easily supply my son for SI but he is going downhill fast so probably needs every other day for a few weeks.
He is reluctant to go against his GP.
I don't feel he can chance becoming even sicker.
I can't find a local Endo who would see him privately without gp referral and even then not one who has a particular interest in PA.
I am at wits end and would appreciate any ideas/ comments.
Thank you
Ellie
Written by
ellj
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Why was it tested??When mine were refused by a nurse the Gp in question messaged a neurologist who said they can carry on.I felt at the time to 'cover his back'
Get him to see the partner of the new practice.
Meanwhile write in as this will be scanned onto his notes .
He has a PA diagnosis and should have that on his notes .
State the symptoms returning.
That or a proved clinical response to b12 injections for any absorption problem need treatment for life.
There's no cure but b12 management.
Keep the letter short .
This has happened several times to me and mother . My daughter needed more frequent b12 too.
Presently all on b12 injections .
I bought b12 as was never going to be without and then able to fight the wrong cruel decisions made by gps lacking the knowledge
On what grounds was treatment withdrawn.?
Point out once on injections no more testing b12 levels is needed as levels should be high.
The nurse who injected me today said the blood forms now say b12 level is meaningless if on b12 injections ( or words meaning the same)
Never seen that before !!
No testing required .
Keep ringing ,messaging, booking appointments until sorted
PAS hopefully can help .
It takes alot of energy and perseverance but he must get them back.
To convince his doctor, you might try sending a letter to his doctor using these letter templates b12deficiency.info/writing-... e.g. points 8 and 9
To convince your son, you might ask him to watch the PA society's documentary, Living with the Fog pernicious-anaemia-society.... and Sally Pacholok's documentary b12deficiency.info/films/ the second one on the list ith the heading Documentary on B12.
I had a similar situation with one of my close relatives, and they were actually SI'ing. They stopped twice for several months at a time. Nothing I said helped - sent them plenty of info including the films of course. Finally had to accept that they had a right to do what they wanted, even if it meant ill health. I stopped nagging about it but would let them know I was still there to talk about it. Periodically I'd mention things like "oh I was able to do X today, which I wasn't able to last year, thanks to injecting regularly" or "oh my you have tingling again, sorry to hear that. You remember I had that problem too, and it's now gone, wink wink." Sometimes being less pushy works better, but may take longer... it also helped that my other relative and I tag-teamed 😆 So if there is anyone else in the family that could talk to him, and that can do it with finesse, do recruit them! In our case, it eventually worked and they went back to SI after some of the more severe symptoms came back.
BTW he doesn't have to tell doc he's self injecting! They will never know unless he tells them. He sounds a bit anxious/paranoid, as we tend to get when low B12/folate.
Club B12 is a worldwide group of researchers, doctors and other interested people who are looking into B12. They have regular zoom meetings and a conference in UK in September 2023.
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Many UK forum members turn to treating themselves when NHS treatment is not enough.
Some get extra injections from private GPs or beauty salons, some try high dose oral B12 but some including myself report that this does not work and some as a last resort try self injection (SI). There are forum threads about SI.
Your son has been without B12 treatment for several months.
Is his new GP aware that untreated or under treated B12 deficiency may increase risk of developing spinal damage?
Might be worth him discussing this risk with his GP. Perhaps he could pass article below to GP.
PAS article about SACD, sub acute combined degeneration of the spinal cord
One thing I'd urge your son to do is to track down the local B12 deficiency guidelines that his ICB (Integrated Care Board) in England or Health Board in Wales/Scotland is using.
If he can't find these online or by searching forum threads here then bet bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a copy of or link to them.
Some of these local guidelines are not helpful. I'm wondering if your son is living in an area with unhelpful B12 deficiency guidelines. See blog post below.
You could cut loose from you doc. continue with the 8 weekly and also SI. I don't tell my surgery I self administer. The important thing is to get your son well. And avoid further blood tests if your GP is ignorant about PA, which he clearly is. I was fortunate that my GP surgery understands that injected B12 means a high B12 reading. You're not so fortunate. This PA business is so hit and miss re the medical profession.
This is so sad. Like many others on this forum, I suffered for exactly this reason when my treatment was stopped as the blood tests came out "HIGH IN THE RANGE". Finally, I decided to take matters in my own hands when my health kept on deteriorating and am curing myself.
Serum blood tests mean nothing once any kind of supplementation is started, including high-dose orals. This is well-known and is there in all the research papers(we can give you references, if your son needs), but most even otherwise good doctors are still ignorant of this FACT. It is natural to trust a doctor for one's medical needs, but unfortunately, in this case, we have to take matters into own hands if we want to get well.
He needs to get the treatment ASAP. If he won't take injections, at least get him onto high-dose orals (2000mcg/day cyanocobalamin works well, as per a well-known clinical trial: kuzminski 1999).
I agree, but 2,000µg daily did nothing for me. I had to take 25,000µg for any absorption at all. Sickly taste and the sorbitol in it affected my bowels badly. I was glad when I managed to get a fresh supply of Pascoe hydroxocobalamin ampoules from Amazon.de. Self-injection is simple, quick, and safe. A bit nervous on starting but soon got used to it.
I agree that injections are the best and most reliable. The problem with orals is that the absorption is variable. Also, only 1.2% is absorbed, so 2000mcg/day will take at least one week to start working (as per my experience) and about a month for full effect. Hence, orals are generally recommended only for maintenance and even that doesn't work for all. For me, 100mcg/day cyanocobalamin injection gave good results and I am reducing it gradually, so that I can get to 20mcg/day maintenance dose. Not sure I want to go to orals, as the variable absorption gives me trouble and once when I had diarrhoea, all the symptoms returned meaning that the absorption had reduced
His medical notes from previous GP are already with the new GP but there is a difference of opinion as to my son's needs.
His previous GP did in fact highlight the injection therapy given and stated that he was relieved to see that his patient had been caught in time and appeared not to have suffered any permanent damage.
Even that cut no ice with the new GP who is somehow convinced that " too many people are jumping on the B12 bandwagon "
Having read all the comments which all have their very good points and suggestions my guess is that the highest likelihood of success is the comment from upholsterers.
Consider traveling to where the former GP practices and get a one-on-one meeting and ask that professional for his help.
If the problem of the GP not accepting the science of the blood levels is solved then starts self-injecting as needed to thrive.
I should imagine that your son's treatment would have to be started again from scratch after all this time.
If he has return of symptoms that include neurological symptoms, the treatment should be every other day until no more improvement can be gained by doing this - and then a lifelong maintenance dose that is actually capable of maintaining the gains made. Nerve damage repair can take a long time. If not treated sufficiently or for long enough, the nerves may not be fully recovered. Some people receiving poor/late treatment find that they do not get all feeling back in affected areas, so the sooner the better.
NICE guidelines give GPs guidance regarding treatment. They state, as do all current UK guidelines, that there is no reason to retest serum B12 after injections have started. They also expect GPs to treat patients with B12 deficiency with neurological symptoms with EOD injections. Although they then suggest a uniform maintenance dose of 1 injection every 2 months, if this is unable to maintain the improvements, it is not doing it's job. An observant GP would ensure that a regime intended for life is appropriate for the patient in front of them. Especially when the patient has been given such poor care previously.
I can fully understand why your son feels that he is vulnerable to being dismissed.
I was lucky in that my usual GP was aware that, in the end, I had resorted to self injection in order to ensure that I did not deteriorate again. She continued to support me, with monitoring other deficiencies (folate, ferritin, vitamin D etc) and referrals to secondary care. I continued to receive one B12 injection a month from the NHS.
At one stage, I had increasingly frequent heart arrhythmia that I felt could not wait for her return from holiday, and saw another GP. He was not so supportive - and immediately got my NHS injections stopped before my GP came back to work.
At the time, I was furious, until my usual GP explained that he had not really changed anything: I still got the referrals, monitoring and support from her that I had been getting.
This is not to say that it will always turn out fine. Just that even within a practice, there are GPs with different approaches - and your son may be better off approaching another more experienced GP.
Look up the guidelines- GPs refer to these or are at least aware of their existence:
NICE guidelines (National Institute for health and Care Excellence): cks.nice.org.uk
New draft NICE guidelines for "Vitamin B12 deficiency in over 16s: diagnosis and management" for consultation and then publication early next year are now available to read (41 pages) and have been discussed on this forum.
BCSH guidelines (British Committee for Standards in Haematology): onlinelibrary.wiley.com
BNF guidelines (British National Formulary): AKA "The Doctors' Bible"
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