Well, I got the blood test results back and it appears I no longer have a B12 deficiency, the figure having risen from 121 to 173 with the help of injections and tablets, so don’t need the injections.
I have absolutely no idea what the IF result means but the note on my file says ‘normal results - no further action’
I’m presuming my life now goes back to pre-deficiency days.
You've had injections and your B12 level is only 173 ng/L!!!!
That level is barely above the bottom of the range. You are almost certainly going to find the symptoms coming back if you do not get more injections.
What??
Its below range on supplements at 173 if its thr sane measurement they use on my bloods.
IF result just means no antibodies on that test. It usually diagnoses 50% of people that have PA. So as it says a negative test dies not rule our PA
How long have you been having I jections?
How are you?
I had the loading doses (6) in May 19 and then August, November and finally February this year. With the onset of coronavirus, my GP told me to take a minimum 50mcg of cyanocobalamin daily so I got the 400mcg daily tablets and have been taking them.
I stopped taking them a week before my blood test and boy did I know it. I could barely get out of bed let alone function. I restarted them as soon as the blood was taken and can already feel the difference.
Thats good if you can absorb from tablets
But sounds like you need the 3 monthly boost of an inje tion too now started. Your levels are low even though you can absorb and feel the difference with your b12 tablets. Or maybe q higher oral dose??
I was thinking of giving an increased dose a try. Is there a suggested maximum to take?
It was suggested on a PAS letter to try 1000mcg through the pandemic if refused injections. I tried them but unfortunately dont seem to do a thing for me.(as well as injections lol) I'd previously taken 50mcg from Gp. 100mcg 500mcg ect. Or perhaps they 500mcg am and pm. You cant overdose. If you feel the benefit go for it whilst waiting for your surgery!!
Hi,
For your level to only rise to 173 ng/L after injections and tablets seems very low.
I had multiple typical symptoms of B12 deficiency with many neuro problems with results that were well within normal range eg 300 - 500 ng/L.
I suggest you have a look at the detailed replies I left on your older thread below.
healthunlocked.com/pasoc/po...
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest.
healthunlocked.com/pasoc/po.....
I never wanted to self inject but faced with slow deterioration into dementia and spinal damage and denied any treatment from NHS I was forced to.
I used to cry when doing it at first...not because I was scared or it was painful ( it wasn't)but because I had been put in that position by ignorance among medical profession.
I am not medically trained.
My husband says that the medical literature reports that in patients with malabsorption problems the usual oral dose normally required is 1000 to 2000mcg. At least 500mcg is required to have any appreciable effect. When a patient has significant symptoms of B12 deficiency the aim of treatment is to alleviate those symptoms NOT to push the lab test results to a level where the 'normal range overlaps with that of many patients (even untreated)'. You already report the return of your symptoms. Your doctor is not following the guidelines and is failing in their duty of care if they incorrectly now deem you normal and do not treat your symptoms.
Those studies on oral absorption of B12 are, to quote Hajo Auwerda (the top B12 haematologist in the Netherlands), stupid. pernicious-anaemia-society....
Most of them didn't bother to see if their subjects actually had PA. So their results could be based on people with dietary deficiencies. The couple that did were very small scale and not very well carried out. That is why the PAS are helping run a definitive study to see if oral B12 can be absorbed by people who actually do have PA.
As somebody who has take 10,000 mcg a day I can say that I cannot absorb any oral B12.
We agree entirely with Auwerda and your comments. However someone is pushing this line of treating with oral supplements to bring serum levels back to normal and then stop. It may be based on the work of the group at Strasbourg University who have published two literature reviews purporting to indicate that oral treatment is equivalent to injections. They cursorily mention that this is not necessarily so if neurological symptoms are present. The first review hardly mentioned whether or not there were actual clinical improvements in symptoms. In the small scale studies that did mention clinical improvements it was only recorded in 20 to 30% of the subjects. In the second review on the treatment of the elderly published this year, the Strasbourg group claimed to have helped 46.6% of their patients. However, as you infer their patients seem to come primarily from gastroenterology clinics and it is not clear if dietary deficient problems were excluded.My husband believes that these reviews are not truly objective or balanced .They hardly mention treatment with injections except for a protocol that ironically has more frequent injections than in the UK. He was more impressed with a Swiss study published in 2017 that started with the premise that oral treatment is equivalent to injections. Halfway through the study it had to be aborted because the results were demonstrating a huge discrepancy. Oral treatment of their patients was decidely not equivalent.
‘I’ve just eaten some food, and my stomach feels full, so I guess I won’t need any more food ever”.
See the fallacy? PA is not reversible, and unless you are a vegan at last getting some B12 from tablets, your problem is likely that you can’t absorb B12 orally, and will continue to need injections to stop your (very low) B12 level dropping below 150 again.
Just like me, burning up that food I ate, and needing replenishments at regular intervals.
That’s a really good analogy. 😊. I think B12 is one of those things that few GPs actually understand is an individual thing and not just about scores.
Gastroscopy and colonoscopy came back "normal". What now?
serum folate 4.4ug/L, serum vit B12 67ng/L
What exactly is Functional B12 Deficiency?
