I have an appointment tomorrow with my GP who is actually pretty helpful but as seems to be the norm....doesn't seem too ofay with B12 issues, so I am looking for advice so as to go in best informed!
I have had x 5 loading doses of B12 after serum level 141. Tested neg to IF and GPC antibodies. Local guidelines for Gloucs say that I should now receive nothing until retested in 6-12months. Hahahaha!!!! Actually I'm not laughing at all of course. I intend to present the BSH guidelines which as I have neuro symptoms I believe state that I should receive injections every other day until improvements cease, and then receive 2 monthly injections thereafter, however I am expecting to meet opposition to this suggestion.
My questions to anyone that can help are: When you take PPI's (I was on omeperazole for approx 10years on and off), is the damage from that permanent, or can it resolve once you are no longer on those meds? Similarly with Nitrous Oxide (I had multiple tooth extractions in the 70's, two children, and several major and minor operations which I know involved Nitrous Oxide), is the damage from that permanent or does it resolve once B12 levels have recovered?
Sorry if this was a long post; I wanted to give background!
Many thanks for any replies, 😃 xx
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Drumstix
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It isn't the PPIs or nitrous oxide that cause damage. It is not having enough B12 available in your cells.
I doubt that dental operations in the 1970s will be a factor - nitrous oxide may render your B12 unusable by your cells but at that point in time it doesn't sound as if you had a B12 absorption problem so your body will have been able to replace the B12 from dietary sources.
Again, if omeprazole was the cause of the absorption problem - its down to how long that caused your cells to be deficient and what symptoms you have. Nerve damage can take a very long time to correct and sometimes it is permanent but it really does depend on how long you have had the symptoms and what exactly was causing it.
Good luck with the GP - you could also try pointing them at the area of the PAS website aimed specifically at helping medical professionals to improve the diagnosis and treatment of patients with pernicious anaemia.
That helps a lot. I think I have had this problem many years and have been supplementing just to get by day to day as we do, without realising totally the implications. I can remember being in tears with my GP at least 15years ago because of fatigue, if not before, and on countless times since then, so I'm really not sure what the cause is. I guess I'll see what tomorrow brings with the GP and then decide whether to SI, but for now I know that I need more B12. I would really much rather do it with the GP on board than without but can't just sit by and get worse all over again.
I can't believe what everyone is up against with the B12 issues. It seems like it should be so simple and cheap to sort out, it's heartbreaking.
Good morning. I must be quite near you as I am in Tewkesbury, Gloucestershire. I had a b12 result of 164 and apparently am in a ‘grey’ area - so no help until I have a re-test in 3 months regardless of neuro problems or extreme tiredness! Almost there thank goodness! I too have felt like this for many years . I think the GP is sticking to the recommendation from the lab without seeing the patient -me!! Hope you are listened to.
Oh that is awful! I can completely relate to this as my first result was 161, at which point the Dr I saw at GRH told me my levels were normal! It was only because I protested that they weren't normal that she then agreed to retest and they came back at 141. Gloucs don't offer any help until you are below 150. Postcode lottery! However there is nothing to stop your GP testing sooner than the three months (no rules), but remember that if you have been supplementing in any way at all they will skew the results. Between a rock and a hard place eh!?
I wish you the best of luck. Also highly recommend getting in touch with the Gloucs group if you haven't already as the leader is really lovely and a huge help!
Yes they most definitely did improve! I feel desperate to continue with injections and despair at the thought of now getting nothing! I think my symptoms started many many years ago; I have struggled with fatigue for about 15yrs and been taking soluble Berrocca which have a load of B12 in them for at least 10years on and off just because they made me feel better! I guess it would be good if they made an attempt to find out the cause if it isn't PA?
Anyhow, thanks for your reply; that's very helpful!
I was on 6 monthly repeat prescriptions for omaprezole for years - as I was a vegetarian and largely vegan - I have no doubt that my b12 deficiency was caused by the prescription. This medicine is lethal in b12 terms if taken over a long period and should only be given in cases where a change in diet will not reduce the reflux problem. In my experience, doctors dole this drug out indiscriminately. Both my mother and my sister were on 20mg pills for years - my mother developed dementia and my sister died of a heart attack. They both lived on restricted diets as they had on and off dieted all their lives and had diets with very low b12 content.
I have neurological symptoms but I keep a diary and I think (hope) that the symptoms are improving and I hope your symptoms improve as well - good luck.
Thanks for your reply! Yes I agree, it's given out on long term repeats without investigation or consideration of long term effects. I blame NHS pressures; GP's no longer have any time to even look at multiple symptoms, never mind take an in depth look at multiple conditions. In fairness I would not want to be a GP in today's NHS!
It's good that you keep a diary, I do too and have found it incredibly useful to be able to be specific about symptoms with the GP. It is evidence you can present and I would recommend this approach to anyone.
I hope you continue to improve and wish you the best of luck!
She will not hear of any further B12 until 6 months now without. Reasoning that there is something else going on and some of my symptoms could be due to whatever that turns out to be, rather than B12 def. I give up. Not laughing any more 😢 I presented the BSH guidelines but no use. I will see how things go but at the first sign of neuro symptoms getting worse again I think then there is no option but to SI. I'm not a doctor but I would have thought that to ensure that B12 is well and truly out of the picture gives more clarity on whatever the other issues are.
" I intend to present the BSH guidelines which as I have neuro symptoms I believe state that I should receive injections every other day until improvements cease, and then receive 2 monthly injections thereafter"
Unhappy with treatment?
Link about writing letters to GPs about B12 deficiency
UK charity that offers free second opinions on medical diagnoses and medical treatment.
BNF
Your GP, if you're in UK will almost certainly have a copy of BNF on desk or bookshelf. If they open it to BNF Chapter 9 Section1.2 it outlines B12 treatment for those with neuro symptoms.
It's possible to get own copy of BNF from good bookshop or internet retailer.
GPC antibody test is not recommended as a test for PA in BSH Cobalamin and Folate Guidelines .
Negative Result in GPC antibody test
This link below hints in "What does the test result mean?" section that some people may have negative result in GPC antibody test and still have PA. I have not found any scientific papers to back this up though.
My understanding of the BSH guidelines (I'm not a medic so I may be mistaken)is that patients with B12 deficiency with neuro symptoms whatever the cause, should be on the neuro regime for B12 deficiency due to risk of permanent neuro damage.
PAS members can access details of PAS support groups. Not every PAS member has a confirmed diagnosis of PA partly due to difficulty in getting diagnosis.
B12d.org
This UK charity offers support to people with B12 deficiency of various causes.
More b12 info in pinned posts on this forum. Useful summary of B12 documents in third pinned post.
If you're in Gloucestershire, might be worth joining Gloucestershire PAS Group. Probably need to join PAS first to access contact details. Local support groups can be invaluable sources of info eg helpful GPs in area.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy to my GPs.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive book about B12 deficiency with lots of case studies.
Have you been tested for Coeliac disease? Coeliac disease can affect gut and therefore lead to absorption problems eg B12 deficiency
In UK, two first line tests are recommended for Coeliac disease
1) Tissue transglutaminase IgA (tTG igA)
2) Total IgA
My experience is that although NICE guidelines recommend both tests, the total IgA test is not always done with suspected Coeliac disease. People with IgA deficiency will not produce tTG antibodies and may need alternative tests for Coeliac disease.
"can remember being in tears with my GP at least 15years ago because of fatigue"
I can also remember being in tears many times so I can empathise (attitude of some GPs didn't help either....).
My personal view is that if a person is symptomatic for b12 deficiency and their symptoms improve while on B12 then they have B12 deficiency whatever the result of IFA, GPC , MMA, Homocysteine, Active B12 etc
Neuro Consequences of B12 Deficiency
Some people on forum have included info on potential neuro consequences of b12 deficiency when writing or talking to GPs.
Untreated or under treated b12 deficiency can lead to permanent neuro damage including spinal problems whatever the cause of the B12 deficiency.
I was unable to get NHS B12 treatment for many years and in end was driven to self treat as an absolute last resort. Some of my neuro symptoms disappeared and other symptoms improved.
Thank you for all of that information Sleepybunny.
I will spend tomorrow doing more research from it. I went out today and spent a couple of hours out in the fresh air (countryside) tossing around options in my head and came back still feeling rather downhearted! New day tomorrow! ☀️
I am already a PAS member and in touch with Gloucs who are fab!
Thank you for replying. I had my blood test results printed out for me and have just re-checked them. It definitely recommends a re-test in three months so I think the GP read that and is acting on the lab’s advice. As I’m almost there now ...I shall be making an appointment to address the problem very shortly so thank you for the advice. I hope you are more comfortable soon.
It's because whilst Gloucestershire recognises 'normal' as 180-1000 (as you correctly say), they do not recommend treatment until you are below 150! Good eh!!! They just wait until you can no longer function....work....get neuro damage.... And watch out after that because if you're unfortunate enough to then be IF negative, they give you 5 loading doses and then nothing for at least 6 months, even if you have neuro symptoms! I must stop sounding cynical....sorry. Just so many people between a rock and a hard place, I could weep. Our NHS (who I work for myself) is failing so many people, myself included.
I have a haematology appointment next week, and have got my best diplomatic head ready with good strong bullet point arguments and diary evidence to present. If I have any joy reversing their decision I will be quick to post to offer up any info that I can.
Garden44 good luck with your appointment and upcoming test...😃
You're right beginner1 Gloucs really is the pits for this. It's shocking, appalling and desperately fails us as patients with an incredibly serious and potentially devastating condition. So so sad. But try not to lose heart (she says!), someone said to me that the important thing to remember here is "you know that you need B12" and I have taken that very much on board.
I think the problem in some other areas of UK is that some doctors stick to the local B12 deficiency guidelines rather than looking at BSH Cobalamin and Folate Guidelines. It's possible that the local guidelines have not been updated for several years.
I think local MPs would be interested in hearing from people in UK who are struggling to get treatment they are entitled to.
Hi Drumstix,
" haematology appointment next week..got my best diplomatic head ... good strong bullet point arguments and diary evidence"
I struggled so much when I was trying to discuss possibility of B12 deficiency. I had no-one with me at most appts and in the end realised no-one was taking me seriously. My preference would always be to have someone supportive who has read up about B12 with me who could step in if my brain fog was bad. Having a witness would have been very useful as there were times I was not treated kindly.
Do you have someone supportive who can go with you?
My personal preference is to write polite, concise letters about any treatment concerns as this avoids face to face confrontation. See link below.
My understanding is that letters to GPs and consultants are filed with medical notes so are a permanent record of issues raised.
Hidden mentions SACD sub acute combined degeneration of the spinal cord
Some forum members have included info about SACD and other neuro consequences of untreated or under treated b12 deficiency/PA in letters or discussion with doctors.
Sleepybunny thank you so much for this reply. I had not even considered taking anyone with me who is ofay with B12 def. The only person I could think of who knows about this stuff would be my local group lady. She has been amazing, but I'm not sure it would be fair to ask this of her. I'll see! My plan was to take an amitriptyline the afternoon before which knocks me out for 12hrs! My brain will then be in best form!!! Otherwise I will be awake in the night worrying and probably with limbs flying around (one of my neuro symptoms) and not be in good shape. I will research the SACD you refer to.
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