Kyleena coil fit 2 years ago but bleeding daily for past 2 mths
I cannot function or do my job
I had various bloods tested on Monday this week, on Wednesday I was given prescription of cyanocobalamin 1mg following b12 of 118. My previous numbers were around 450 on past tests.
I believe my GP is awaiting intrinsic factor result before considering injections.. but I think I've read with b12 this low it should be started immediately.
What is the guidance or correct procedure in this case?
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B12-118
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Was the "prescription of cyanocobalamin 1mg" given as an injection? Ideally you should have injections of cyano every other day for 10 to 14 days or until your symptoms have stopped improving. For long term treatment (if necessary) they are normally every four weeks thereafter.
Do you know why your B12 was so low other than (possibly) the long term bleeding?
Do you know whether your iron and Folate levels were tested?
I am not a medically trained person but if you can reply to the above questions others on this forum who are more experienced may come along with good advice.
With the symptoms you have and a B12 that is that low you should really be on loading shots rather than 1000mg tablets as you need your B12 levels raised much more quickly than can be achieved with high dose oral ... and high does oral just doesn't work for everyone - it works for some but not for others.The fact that you are having issues with balance and bumping into things suggest that you have neurological involvement and your treatment needs to be more aggressive to ensure that neurological problems start to reverse.
I am assuming that your deficiency isn't dietary - ie you do it meat and animal products.
Unfortunately the test for Intrinsic factor antibodies isn't very sensitive and gives false positives between 40-60% of the time (depending on the exact test so a negative is a long way from ruling out PA as a cause. The BCSH guidelines actually refer to IFAB-negative PA as a result.
If you can talk to your doctor - ask him to look at the BCSH standards on cobalamin and folate disorders which can be found here
Unfortunately there has been some rather confusing guidance issued during the pandemic which has compounded some rather unclear guidance elsewhere on treating B12 absorption problems, of which PA is the most common.
Your GP may also find the area of the PAS website specifically geared towards helping medical professionals improve the diagnosis and treatment of PA
I have a good diet. I have eaten 2 eggs every day for breakfast for must of my life, I eat meat and dairy. Don't drink or smoke. Don't exercise though.
No other health conditions other than taking sertraline 150mg to manage anxiety which it generally does well.
The docs did a good lot of bloods on me, here are the highlights
B12 is 118
Mean Cell haemoglobin level is 32.6 (27-32)
Serum potassium is at bottom end of normal range at 3.5mmol/l (3.5 -5.3)
the only think that is obviously out of whack is the B12 and the MCH which is high (indicating that you have macrocytosis as a result of the B12 deficiency). Given your diet you have an absorption problem and if you think back over the last few years and think about the symptoms of B12 they may well have been creeping up on you for years, possibly even decades. It is probably worth keeping an eye on the TSH as there is a high co-morbidity for hashimotos (auto-immune hypothyroidism) and PA but the big thing is probably to get through to the GP that IFA testing doesn't rule out PA and at the moment, as it isn't diet, PA is the most likely. High dose oral might work for you but it will be quite slow in raising your levels and as you have neurological involvement then it should be addressed quickly.
Thank you so much. Can't thank you ask enough for your help. There is reams of stuff to read and my brain isn't working like it used you. Yes this fatigue has crept up on me.. Ive blame everything from a stressful job to becoming a mum. Im 45 with a 2 year old. Of course I'm going to be tired but boy this is something else.
She took cervical swabs re bleeding, left coil alone for now. Results bk in a few days.
Re B12 (118)
She agreed to give me loading doses and these are booked in over the next 2 weeks, starting 2mrw, (6 doses. Tues, Thurs, Fri this week then Monday Wednesday Thurs next week)
However, intrinsic factor came bk negative so initally she says I won't need injections after this.
I try to quote the evidence of 50% accuracy of this test, knowing mine isn't diet related but it came out all garbled.
The issue is with man power and she confirmed what we all know, about people having them stopped over covid.
I said I am happy to self inject. I am a nurse.
I'm a mental health nurse but I've been trained to give injections.
With that she seemed happy, in that i am competent to do so and has asked the pharmacy if this is possible to have the ampoules following losing dose. Await reply.
Ok.. devil's advocate...imagining the intrinsic factor result is true and not a false negative, could the loading doses be enough to get me back on track (bearing in mind I had covid in Dec 2020 and wonder if this played a part) or do you think, given it is not diet related, I WILL need to continue for life?
I was quoting PA guidance but she said to me, but you don't have anaemia... just the b12 so it's not PA.
frustrating. Pernicious Anaemia is an auto-immune disorder of the gut which prevents/ inhibits the absorption of B12. One consequence of this can be anaemia - 20% of patients with PA don't present with anaemia.I suggest you write or email - copying in the practice administrator and share the link to the BCSH guidelines and ask the GP to read and digest the section on various tests for causes of B12 deficiency and their limitations - alternatively print out the section or cut and paste it into a letter with a link so they can double check if they need.
Some absorption problems can, in theory be treated with the result that you wouldn't need injections for life - h pylori infection, tapeworm infection, SIBO. Unless it has been confirmed that you have one of these and it is being/has been treated you will need injections for life as the most efficient way of ensuring B12 levels are maintained
You only need to supplement if you are deficient at this point. Absorption problems can also affect other vitamins and minerals but at this point folate looked okay
No I think the results are correct given my symptoms. I was checking why with b12 this low I've been given oral meds instead of inje whilst they wait in intrinsic factor result... but even if that's negative .... clinically I need the injections 💉
In my case I wish my physician had done a homocysteine level and methylmelonic acid level along with the intrinsic factor blocking antibody test. The intrinsic factof test can give a lot of false positives in people with PA. I don't know about in ghd UK but in the US I will get back most blood test results within 3-5 days so waiting a brief period of time probably causes no problems.
I would keep an eye on your thyroid as your tsh is creeping up. Did they test your T4/T3? I would do private blood tests for a full thyroid panel in 3 months to see if there are any changes. Your ferritin levels are in range but at the lower end too , I like to keep mine above 70. Look at the Thyroid Uk site on here and there is loads of information from people whom are far more knowledgeable than I am. Hope you improve quickly.x
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate
deficiency.
Vital to get adequate treatment as untreated or under treated B12 deficiency can lead to an increased risk of permanent neurological damage including problems with spinal cord.
If you feel you are being under treated and you have neuro symptoms, may be worth drawing your GPs attention to the possibility of SACD.
I'm not saying you have this, just that your GP needs to be aware of the possibility in people with B12 deficiency.
If you see a neurologist, you could ask them to test your proprioception sense ( awareness of where the body is in space as problems with proprioception can be associated with B12 deficiency and sometimes with folate deficiency. I think proprioception is also called position sense.
Each CCG/Health Board/NHS Hospital Trust will have its own local guidelines on treatment and diagnosis of B12 deficiency. I recommend you get hold of the local guidelines for your area of UK and compare them with BSH, BNF and NICE CKS links above.
Some local UK guidelines are not helpful. See blog post below.
I have put a few of the UK local guidelines on this forum so may be worth searching for your area's guidelines on this forum.
Be warned that there are moves afoot in UK to move more patients onto oral B12 tablets.
It's my impression that this is a cost cutting measure and while I accept that some people are okay on oral tablets, some UK forum members have reported that oral tablets were ineffective.
"but she said to me, but you don't have anaemia... just the b12 so it's not PA. "
Oh dear....I think she needs to do a bit more reading about B12 deficiency.
Misconceptions about B12 deficiency
Sadly some doctors (both GPs and specialists) and health professionals have misconceptions about B12 deficiency.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.
Link above has letter templates about various situations to do with B12 deficiency.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain some of the following relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists but try to keep them short.
PCA is not recommended as a diagnostic test for PA in UK.
"I believe my GP is awaiting intrinsic factor result before considering injections"
It is still possible to have PA with a negative result in IFA or PCA test but sadly some GPs may not be aware that it is possible to have Antibody Negative PA.
Is your GP aware of the possibility of Antibody Negative PA?
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
Antibody Negative PA is mentioned in BSH Cobalamin and Folate Guidelines document. It is also mentioned in Martyn Hooper's book below.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in above book is out of date. See BNF Hydroxycobalamin link in this reply for up to date treatment info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
I've written some very detailed replies with more B12 info eg more on causes of b12 deficiency, symptoms, blood tests, more B12 books, more B12 articles, hints about how to cope with unhelpful GPs etc that you may find of interest.
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