so I posted my sons blood results being concerned over his very low active b12 and having to wait weeks for an appointment with Gp.
Finally seen Gp who question the private bloods and ordered her own. She tested for pernicious anaemia apparently. Other blood results have returned and are
Ferritin 32 Range 24-336
Serum b12 155 range above 205
Folate 4.6. Range above 4.
So she’s prescribed cyanocolbamin tablets 1mg and retest In a month. She’s not waited for the pernicious anaemia results!!
I am furious. She has not followed the BNF or NICE guidelines which both state hydroxy injections. And we all know retesting after starting medication is pointless!
what do we do?
I have advised my son not to take any meds until we get the pernicious anaemia results back. Should we also ask to see another Gp and throw the nice guidelines at them?
Thankyou
Written by
Blister4
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Looks to me that his B12 is low. Mine was 139 and I was told it should be above 250 to be normal. I was given 2 B12 injections a week for 3 weeks and just had my first 3 month booster. I feel so much better, I feel I have more energy and the nausea has stopped and the extreme tiredness and the weight loss. It took over 2 years of explaining how I felt to my previous GP to get a full blood count. I was also given 3 months of folic acid. I no longer take that.
I would ask for a 2nd opinion as it doesn’t seem right what you’ve been told.
Yes, frustrating but at least you have recognition now that there is an issue.
I would go back to a different GP with the NICE guidelines and ask for loading doses and then folate and iron supplementation. Need to check vitamin D and potassium (I think ) too as good blood is made from a wide range of ingredients- if any are missing then we are not recovering properly.
Potassium is tricky. First of all, can you trust the result? If a sample is sent in from a GP surgery, for instance, there's every possibility that the result would be unreliable because if there's any delay in sample processing, the potassium rises. The sample should be centrifuged without delay to avoid this.
If you're severely anaemic, and you respond to replacement therapy, then the potassium tends to fall transiently, but this doesn't mean that the patient should take potassium supplements; just a diet with sufficient available potassium.
He hasn’t tried b12 tablets before. He has hashimoto’s and the Gp did make that connection with it being an autoimmune disorder.
Is 1mg cyano tablet considered a high dose? What happens if it’s an absorption problem, if he’s not absorbing from food will he absorb the tablet? I have so many questions!
1mg of oral b12 is a high dose but the minimum dose daily to try if b12 deficient.
Smaller amounts across the day may be absorbed better ?
Or more than 1mg
With high doses passive absorbtion possible.
Sometimes people can absorb from food bur not enough so a supplement tops up needed.
If neurological symptoms are present b12 injections should be first line of treatment.
It's so individual.
B12 tablets will raise the serum b12 levels its then whether he can utilise thd b12 or not?
He has a baseline level now
I've many examples of family and friends with different things working.
My husband has type 1 diabetes so an autoimmune condition. Then b12 was well below range .
Few symptoms that could've been a number of things at that stage . So even though an autoimmune condition already he tried b12 tablets . For him it worked and he is on them daily.
So we assume absorption slowed as eats plenty of diary meat ect.
So glad tablets worked as he injects ( insulin) 4x a day already.
I at the time was all for him getting b12 In jections.
As vague symptoms . It was caught in time and fortunately just needs a top up each day with a b12 tablet
Main thing is treating symptoms and halting damage .
It is worth going to another GP. It is my experience that there are GPs within the same surgery that have very different approaches to diagnosis and treatment, both of the B12 deficiency and of the patient.
I think a reasonable GP would suspect (or at least entertain the possibility of) pernicious anaemia:
- having Hashimoto's
- having low B12, along with low folate, ferritin and vitamin D
View this next step as an opportunity to build a new case with a new GP.
Useful to add:
- dietary information
- family history of PA and any other autoimmune conditions
- a symptoms list
- test results (private)
Hopefully the IFab test result will make all this extra paperwork unnecessary, but as you know, these will pick up only 40-60% of those already known to have PA. Let's hope the next GP is already aware of this. Take a copy of the medical guidelines regarding NOT ruling out PA on the basis of a solitary negative IFab result. Take a copy of treatment advice regarding those with non-dietary B12 deficiency, specifically those with neurological symptoms if appropriate.
I think that's it: fully armed !
Feb 2016: I had an initial serum B12 test result of196 ng/L (range started at 197 ng/L) -B12 injections started immediately with 6 loading injections and 3-monthly maintenance injections.
Oct 2016: My hair was still falling out, my gums still bleeding: I had low ferritin and folate - I was given a 3-month course of both. Both were regularly tested thereafter and advice given on when to supplement, when to stop after that (up until the post-covid chaos anyway). It took about 2 years to stabilise both.
May 2017: I was later found to have osteoporosis of the spine, osteopenia of the neck - so am given vitamin D and Raloxifene on prescription. This has not stabilised - it has reduced in severity and now down-graded to osteopenia throughout ! Treatment continues as preventative.
Over the years, I have had three negative IFab tests. This is not a problem since I have a diagnosis of functional B12 deficiency, confirmed by the testing laboratory. My GP gave me 2 injections a week, starting in Oct 2016, seven years ago. She was the third GP I saw. She tested my MMA after injections had started - my MMA remained raised for three years despite this new frequency.
I have a family history of Grave's disease, psoriasis, vitiligo.
Jan 2015: I originally went to a GP with daily diarrhoea, left hip/lower back pain and complete exhaustion - although symptoms later increased -and some long term problems became evident as symptoms only by improving once correct treatment started working.
I now self-inject B12 every four days, finding this the most effective means of controlling most of my symptoms most of the time.
Wishing you and your son the best of luck with your next GP. It makes all the difference not having to fight.
Be aware that any test for PA can be faulty, meaning can show negative close to 50% of the time. Do not expect the doctor to know that. Here in Canada we are counselled that pills can produce a small amount of passive absorption even when one has an absorption issue - I tuned out, I think it is 2%. I have given them a go just for ease at times, did not work.
Here are great informative links. Concise with medical footnotes and not too aggressive for the infamous doctors with egos that will not admit they are not up-to-date with pertinent knowledge.
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