Hoping for some advice please. My apologies for the length.
I have hypothyroidism and B12 deficiency diagnosed in 2017. I also have IBS with a dairy sensitivity since I was 15. I have a healthy balanced diet but cannot digest red meat and have to monitor my dairy input daily. I have been having B12 injections for the last two years every 12 weeks.My thyroid levels have been stable only just this year on Thyroxine 100mcg. The last year has been a struggle to get my injections moved to 10 weeks with no joy due to the symptoms I suffer before my injection is due: brain fog, fatigue, poor sleep, bowel problems.
September this year I went to have my 12 weekly jab and was informed I had too much B12 in my blood in my last blood test, 680 was the reading which was 4 weeks after my injection. They insisted I had an intrinsic factor blood test which took 3 weeks to come back. So I was two weeks into my brain fog symptoms at the time I had my intrinsic factor blood test and by the time the results came back and a fight with the GP they agreed to give me my B12 injections back. Only 1 injection mind you and then I was to have them at 12 weeks. after another appointment with the GP he agreed for me to have them at 10 weeks as apparently I know my own body.
Whilst I was waiting for my intrinsic factor blood test I ordered B12 online, I administered 2 injections in one week over 3 days which helped my bowels but nothing else. My brain fog was ridiculous and also I started to have severe pain in my joints that I had not experienced before, I could not walk or remember doing anything. I am a nurse and my judgement was impaired so ended up having to be sick off work for 10 days!!!I had another B12 the next week and two days later the B12 injection from the GP so I had loading dose of 4. Brain fog lifted and a week later the pain in my legs and feet were normal and I returned to work.
I have today received a letter from the GP informing m that as my intrinsic factor is normal it means I should be absorbing b12 if I have a balanced diet. They do not think I will need B12 injections in the future. Sometimes they offer tablets for a few months and then review things with another blood test.
So I am after advice on how to proceed further with this as I am due my injection in 3 weeks time, luckily I have a reserve stash from my internet purchase and as a nurse have the facilities to have a colleague administer my B12.I do not want to have to go through the pain and horrendous symptoms I have recently experienced again and also be off work because the GP wants to use me as a Guinea pig.
The GP did refer me to general medicine who mis interpreted his letter and advised me to continue with my thyroid medication when we were asking about why I needed B12 injections.
Any advice would be greatly appreciated.
Written by
puddings1
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Might be worth passing leaflet/article about SACD to GPs etc. Might help to concentrate their minds if they know the potential for neurological damage.
Unhappy with Treatment (UK info)?
I feel that queries about treatment/diagnosis are better put in a letter to GP. In UK, letters to GPs are supposed to be filed with medical records so hopefully less likely to be ignored than verbal info or info on photocopies.
One potential sign of fish tapeworm infection is an increase in eosinophils (a type of white blood cell WBC) . Eosinophil result can be found on Full Blood Count results.
These English articles from Dutch b12 website may also be of interest to you and your GP.
Best advice I ever got was to always get copies of blood test results. Most UK GP surgeries have onlien access to results. Details will be on your GP surgery website.
Thank you so much for the information. I am a member of PAS I joined last night its just what steps to take next. I have a healthy diet but cannot eat red meat due to digestion problems and eat fish. Il take the info to the gp and see what they say. Thank you once again
Write to your GP and the practice administrator refering to the BCSH guidelines on cobalamin and folate disorders. They can be accessed here but your GP should also be able to access them through the BNF
a) monitoring of serum B12 levels after starting treatment is not recommended [don't quote me as it isn't stated in the guidelines but the test is difficult to interpret before treatment but treatment introduces some new factors that mean the normal range doesn't apply.]
b) the IFA test is so insenstive that that it gives false negatives between 40 and 60% of the time and the standards refer to IFAB negative PA.
The doc will not be able to access the BCSH guidelines via the BNF.
The best thing to do is to print them out from here - onlinelibrary.wiley.com/doi... - and highlight the bit of page 500 that says
IFAB is positive in 40–60% of cases (Ungar et al, 1967), i.e., low sensitivity, and the finding of a negative IFAB assay does not therefore rule out pernicious anaemia
And on page 501 that says
Patients negative for IFAB, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-IFAB-negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response
I dont know why drs are so resistant to B12 injections, and not listening to their patients. It is so disrespectful. . I self inject, i needed to taje control of my health. I inhect based on how I feel. No dr is going to control my wellness. Thankfully i have a dr that doesnt question my ability to manage my health. I have considered what happens when he retires. I am not opposed to buying veterinarian grade injectable B12 and sterilizing my sharps.
"Il take the info to the gp and see what they say"
If you can, ring PAS before you do this as they should be able to guide you as to the best info to give to GP.
I'd recommend putting the info into the body of a letter to GP rather than passing on info verbally or on photocopies. GP won't necessarily read photocopies and may forget some of what you say to them.
Letters could contain a symptoms list, blood test results, relevant family and personal medical history, extracts from UK B12 documents etc.
See letter writing link in my other post.
Is there a family history of PA, other auto-immune condtions eg Coeliac, B12 deficiency?
Worth mentioning this in letter and telling GP face to face.
In UK, my understanding is that letters to GP are supposed to be filed with medical notes so are hopefully less likely to be ignored than verbal info or photocopies. It also helps to create a paper trail showing you have raised these issues with GP in case there is a need for making a complaint in the future.
Keep copies of any letters written.
Help for GPs
You could tell your GP that
1) PAS website has section for health professionals and that it is free for your GP to join PAS as an associate member.
3) I gave my Gps a copy of Martyn Hooper's book " ".
If you consider doing this then put a note in book that BNF info on treating B12 deficiency has changed since book was written.
4) As you're a PAS member it may be possible to arrange for your GP to talk to Martyn Hooper, chair of PAS but you would need to discuss this with PAS first.
There is a useful summary of mainly UK B12 documents in fifth pinned post on this forum.
Local Guidelines
Some parts of UK are using local guidelines that are years out of date and do not match what is in national guidelines eg BSH guidelines.
I suggest tracking down the local guidelines for your part of UK and comparing them with national guidelines/articles eg BSH, BNF, NICE CKS.
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 does not show updated BNF info.
"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
I also plan to read
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Copies of these books may be available from your local library service.
If you live anywhere near Durham, B12d.org holds support meetings in Peterlee.
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
puddings1 . Hi. You have enough information to be getting on with from people who have learnt more about B12 deficiency out of necessity than any medical professional I have met - and I have met quite a few over the past 4 years.
My serum B12 level, once I was on injections every 3 months, was over 2000 ng/L so 680 a month after your injection does not sound very high to me !
Because I was really going downhill fast, my quick-thinking GP had my MMA tested- it was raised . Because she had also had my liver and kidney function tests done, renal problems were ruled out - so she diagnosed functional B12 deficiency, and it was confirmed by the lab based on these results. There is no recommended treatment for functional B12 deficiency - other than Turner and Talbot's 2009 research paper, suggesting frequent B12 injections.
Despite my best efforts, I could not get a reliable long-term frequency unless I resorted to self-injection. I tried for years. My NHS injections (at that point once every 2 months) were stopped because I self-inject frequently. This was done by a GP who was not my usual one, and who took this information to a practice meeting without discussing it with me or my usual GP. He wrote me a letter informing me of the practice decision, and NHS injections will only be reinstated if I stop self injecting and follow their regime. One which would lead me to deteriorate again. My usual GP is aware that frequent injections work for me, and less than that doesn't.
I think that the Intrinsic Factor antibody test (IFab) is only a useful tool if you know that it will give a false negative 40-60% of the time, but that any positive result is reliable (95%). Since most GPs will only have the test done once because they aren't aware of this, it would be a gamble. Martyn Hooper (founder of the Pernicious Anaemia society) had to have 3 tests to get a positive result. So your GP relying on the results from one IFab test appears to be lacking the necessary knowledge about B12 deficiency to keep you well.
You might do better having your MMA tested; although methylmalonic acid is supposed to drop to normal levels rapidly once your B12 is replete, this is believed to be a more reliable second confirmatory test.
The only other reasons I know of for a raised MMA are renal problems (which can be ruled out easily by blood test simultaneously) or small intestine bacterial overgrowth (SIBO) which can be ruled in/out by a hydrogen breath test - and in any case would give you B12 deficiency (among other vitamins) because the bacteria steal B12 from you. So a bit of a lose/lose situation ! SIBO is difficult to treat apparently because although antibiotics are the answer, the bacteria can become immune and so the type of antibiotics need to be changed frequently.
Well done for not waiting for your GP to get up to speed and working out your own needs. I have found trust in my GP to be a vital part of improvement. Not saying you need a B12 expert as a GP but you do need someone who will look at you and listen to you -and then go and look it up.
I don't know all of your symptoms but if you look in the mirror and see that you look ill (particularly as a nurse trained to spot telltale signs) - would you expect less awareness from your doctor ? List all your symptoms and record what happens daily: frequency and severity, particularly in relation to your injections. Hopefully a pattern is forming that even your doctor can see !
I see that you are a nurse.. I do not want to offend you... some times we are too close to the Picture to see the Problem... I do this alot...
what level is your STRESS ? ....
what is you Iron level?
what size are your blood cells?
remember: Many types of anemia exist, such as iron-deficiency anemia, pernicious anemia, aplastic anemia, and hemo- lytic anemia. The different types of anemia are linked to various diseases and conditions
also I will ask how much sugar do You eat... Look at the lable on food... Sugar creates the wrong flora and this can create a problem with absorption....
May I suggest you do a detox from sugar and reset your diet, look into the size of your blood cells... Lower your Stress.... Inhale Peace & Exhale Worry.... you will feel Better...SOON
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