Thanks to all of you who wrote with advice last week. I have been to the GP twice (last week and today) to reiterate (1) that BCSH guidelines & NICE say treat every second day until no further improvement and (2) that I do think that the B12 deficiency is causing my symptoms. In particular I said that my neurological symptoms (dizziness, brain fog, memory problems) are distressing, not improving, and that I want to avoid permanent damage. Each time, a different GP was uninterested in hearing about the problems with the B12 serum test and about the guidelines. I suspect there's also considerable reluctance to entertain the idea that B12 deficiency has caused my recent health problems, even though symptoms are classic. This morning I even took the BCSH guidelines with me to no avail.
However, a couple of encouraging things have happened:
1. I got my B12 serum test results for the last 13 years. These show consistently low results with a big dip between 2016 and May 2018 to deficient. Even seeing these results over time has helped me to visualise what's going on. I also got folate and iron results and also found it useful to look at them.
2. Last week, the GP agreed to ask a consultant haematologist for advice. Awaiting result and hoping it's someone who has read the blinking guidelines!
3. This morning after some discussion, the GP agreed to a second course of 6 injections on the basis that "it can't do any harm". This will be happening a good 2 weeks after the end of the first course, so it's not ideal, but it's better than nothing. All of the GPs i have seen are refusing to treat on an ongoing basis, so I'm looking at having to self-inject in future.
Question: I'm about to go to Spain for 2 weeks holiday. Has anyone taken a self-inject kit on holiday with them? My GP surgery will start my course this week but I am wondering if I can do the final 3 injections & continue with my own injectin while I'm away. The surgery said that I will need a doctors letter to take a kit out of the country. (And of course I need to get my hands on the stuff and learn how to inject it this week). Any advice on how to do this?
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Olive1977
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We were in Spain last year and I had a major dip in my B12 levels in Santiago de Compostela while walking the Camino (not fun). I wasn't at all prepared while away (I'd had a shot on leaving home (Australia) three weeks earlier) and only had sublingual lozenges with me, which now I know don't work for me. Thankfully, a tiny chemist in the back streets of the old town of Santiago de Compostela had B12 ampoules (cyano) and syringes, so I guess if I could find them there, you could find them anywhere in Spain - and there are pharmacies everywhere. Naively, at the time, I assumed you could buy B12 over the counter anywhere in the world, as we can in Australia, so I was fortunate we were in Spain.
I think airlines each have different requirements on taking medication and associated paraphernalia, particularly as carry-on. We're flying Singapore Airlines with carry-on only in August this year and they seem to be very strict with explanations in doctor's letters as to why the medication, etc. is required. I'd check with your airline's website and/or your travel agent.
Have a fantastic time! Spain is our new favourite place
Thanks for this designer8! Sorry to hear you had a crash while you were away but it's great to hear they stock it even on the camino! That's very reassuring...
Have you considered putting your concerns over treatment in a brief as possible, polite letter addressed to GP? I have written letters with concerns, symptoms, extracts from UK b12 documents, relevant family history.
My understanding is that in UK, letters to GPs are filed with medical notes so are a record of issues raised. I think letters are much harder to ignore than things said in an appointment which may be forgotten or not recorded.
Useful summary of B12 documents in third pinned post on the forum.
UK b12 treatment
For B12 deficiency without neuro symptoms
6 B12 loading jabs over 2 weeks followed by a jab every 3 months
For B12 deficiency WITH neuro symptoms
A B12 loading jab every other day for as long as symptoms continue to get better ( could mean loading jabs for weeks even months) then a jab every 2 months.
See BNF, NICE CKS and BSH links above for info about UK B12 treatment.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and 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 of this book 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 with lots of case studies.
PAS (Pernicious Anaemia Society)
Based in Wales, UK but has members from around world. PAS offers support and info about PA.
If PA or Antibody Negative PA is a possibility, may be worth joining and talking to them.
You mentioned in your previous post that you were considering asking for MMA, Homocysteine, Active b12 (HoloTC). The results for these are likely to be affected by recent b12 injections and B12 supplements. See Blood Tests link above.
If you eat plenty of b12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with b12 then diet as a cause is less likely and it is more likely that there is an absorption problem.
Have you been tested for PA?
In UK, people with suspected PA are given Intrinsic Factor Antibody (IFA) test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range. See BSH and flowchart links above for info about Antibody Negative PA. Some UK GPs and specialists may be unaware of the possibility of Antibody Negative PA.
Coeliac disease can lead to b12 deficiency due to its effect on gut. NICE guidelines on Coeliac Disease recommend anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.
One sign of parasite infection can be raised eosinophils, a type of white blood cell. A full blood count (FBC) test should have a result for eosinophils.
Thanks so much for all of this Sleepybunny! I have asked my GP to follow up with a private general consultant about the need for further testing re parasites because I did get ill on holiday abroad about 2 years ago. I am also going to press for more testing re autoimmune gastritis when I get home from holiday, because my IF test came back negative and I am now aware of all the problems with that. I'm not sure whether I have had either of the two tests for coeliac and will ask about that.
You raised neurological consequences of B12 deficiency and I have also raised this 3 times now with different GPs at my practice and they won't hear it. I think it's just lack of understanding about how serious B12 deficiency can be. It's really interesting, given that my B12 tests show a sharp decline over the past 2 years - and yet they keep dismissing it as a potential cause. I will write to them with copies of the PAS leaflets and hope that when I get back from holiday, I can make some progress. In the meantime, I suspect it's SI for me because I do feel so much better when I have had the B12 shots.
Going to Portugal, I got some vials from the chemist in the UK, stuck them in my checked in luggage, and then bought syringe and needles from the local pharmacy without any issues.
Thanks B12Bobby. So I assume that it's possible to bring vials back in checked luggage? I'm thinking that might be an easier way to get my hands on a small supply for SI after my holiday while I figure out a more long term solution. What's your experience of travelling back into the UK with vials in luggage? Do I need a GP letter for that?
Hi Sleepybunny, just in case you miss my first answer: B12 and syringes are over the counter here, no doctor's letter needed for any of them. It is very common to find Optovite B12, which is cyanocobalamin. If they don't have it, you can ask them to bring it for you and they will (in Barcelona it can take just some hours or 1 day, don't know where you are travelling to). Other types of B12 are also available, just ask the pharmacist if you prefer "hidroxocobalamina". But the easier one to get is Optovite B12.
BTW, I am from Barcelona (no PA group here).
Some people buy a lot of B12 ampoules and syringes here, as they are not only easy to get but also cheap. Just be aware of how many you can get back home.
Good luck and have a very nice trip! It's hot and sunny here now
Thanks everyone for all this! It's really encouraging! Looks like I'll be able to continue with every second day injections until I get back. And in the meantime I will write to my GP - thanks Sleepybunny for the suggestion. I think this will help get across the information much better. I'm a member of PAS so will also include the medical professionals update etc.
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