Hi,
I've recently had blood test which showed my B12 was low and I've been put back on tablets again. I'm not sure how low it was.
How long do you feel for you that the tablets start to work. I've been on them for the last couple of weeks and I still feel exhausted.
Thanks
Jo
Hi JoJo32 I'm not a medically trained person but I wonder why you B12 level has been going up and down. Have a look at the following people who are at risk of developing a B12 deficiency.
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Do you see yourself among the above?
Also was your Folate level tested at the same time?
As to how long before the tablets will improve your symptoms a lot will depend on how long your B12 was low.
Goodnight.
where are you based - UK or ???
what is your diet like - do you eat meat/fish/dairy/egg?
what symptoms did you have before you were put on tablets?
pernicious-anaemia-society....
and what is the strength of the B12 tablets you have been given? If you have an absorption problem and that is why your levels have become low then to have any chance of working the tablets would need to be very high dose - normal treatment for B12 deficiency caused by an absorption problem is injections.
Do you know if you had any signs of macrocytosis - enlarged rounder red blood cells - this will take a couple of months at least to clear.
sorry but it really would help to have details of your blood test - full blood count - B12 and folate levels (with units and ranges).
serum B12 is a difficult test to interpret as people vary so much that the test if you go by range alone would mist 25% of people who are B12 deficient but also picks up 5% of people who aren't - hence symptoms are really important in identifying whether you do have a B12 deficiency. macrocytosis isn't a good marker if you have a folate deficiency as it could be caused by either B12 or folate deficiency.
Hi
Thank you both for your replies. I live in UK. I've got a balanced diet although I don't eat red meat and haven't for over 20years.
I was on the tablets previously and I went to the docs for something else, they done a full blood check and this is what showed. I really need to go to the doctors and get a full break down.
The strength is 1000 per day. I also have fibromyalgia which from it I suffer with IBS at times.
I will make appointment at the doctors.
Thanks
Jo
"The strength is 1000 per day"
Are the tablets 1000 mcg (micrograms)?
I'm curious because I wasn't aware that UK GPs could prescribe 1000mcg B12 tablets.
Has your GP ordered an Intrinsic Factor Antibody test?
"got a balanced diet although I don't eat red meat"
If your diet is balanced with plenty of B12 rich foods then that makes the possibility of an absorption problem more likely.
Have you ever been tested for Coeliac disease?
The gut can be affected in Coeliac disease and may therefore lead to nutritional deficiencies eg Vitamin B12 deficiency plus others
It is possible to have Coeliac disease even if the test for Coeliac antibodies comes back negative.
Coeliac UK
coeliac.org.uk/coeliac-dise...
Have you considered contacting the PAS (Pernicious Anaemia Society)?
They are helpful and can pass on useful information.
PAS tel no +44 (0)1656 769 717 answerphone
"I will make appointment at the doctors."
I'd suggest reading up about B12 deficiency before appt because some people on the forum have found that their GPs were not as well-informed about b12 deficiency as they could be.
Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" is easy to read and has info on UK B12 guidelines.
Link about writing letters to GP about B12 deficiency
Hi JoJo32,
If you're in UK, I'd recommend reading the BSH Cobalamin and Folate Guidelines. It gives guidance to UK doctors on diagnosis and treatment of B12 deficiency.
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart above makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial B12 treatment.
Have you had an Intrinsic Factor Antibody test?
This can help to diagnose PA (Pernicious Anaemia) but test is not always reliable and it is still possible to have PA even if IFA result is negative (called Antibody Negative Pernicious Anaemia). My experience has been that some GPs are unaware of the possibility of Antibody Negative PA
Some UK doctors may not be aware of this document, I gave a copy to my GPs.
The most important thing I learned....
from years of trying to find out what was wrong was to always get copies of all my blood test results. I learnt to do this after being told everything was normal and then finding abnormal or borderline results on the copies.
Access to medical records (UK)
nhs.uk/NHSEngland/thenhs/re...
england.nhs.uk/contact-us/p...
nhs.uk/chq/Pages/2635.aspx?...
B12 testing
b12deficiency.info/what-to-...
b12deficiency.info/b12-test...
What does GP think is causing your low B12?
I thought oral B12 treatment was mainly for B12 deficiency caused by diet. B12 is mainly found in animal products eg meat, fish, eggs, dairy, shellfish. Do you have plenty of B12 rich foods in your diet?
If a person has an absorption problem eg B12 can't get from gut into blood stream then injections may be more effective.
Do you have any neurological symptoms eg tinnitus, tingling, pins and needles, balance issues, memory problems plus others?
See lists of B12 deficiency symptoms below.
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
In UK, my understanding (I'm not a medic so I could be wrong) is that people with B12 deficiency with neuro symptoms should receive B12 injections whatever the cause of the B12 deficiency.
UK B12 treatment for those with B12 deficiency with neuro symptoms is more intensive than for those without neuro symptoms.
UK B12 treatment
BNF British National Formulary
Details of UK B12 treatment can be found in BNF Chapter 9 Section 1.2
evidence.nhs.uk/formulary/b...
All UK GPs will have access to BNF. It's very likely that there will be a copy of BNF sitting on their desk or bookshelf.
UK B12 treatment info can also be found in BSH Cobalamin and Folate Guidelines, about a quarter through document.
Who's at risk of developing PA and B12 deficiency?
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Other B12 info
1) Pinned posts on this forum. I found it helpful to read fbirder 's summary of mainly UK b12 documents. Link to summary in third pinned post.
2) BMJ B12 article
Emphasises the importance of treating someone who is symptomatic to avoid neurological damage even if test results do not show an obvious deficiency.
3) PAS (Pernicious Anaemia Society) website
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717 answerphone so messages can be left, may take a few days to get a response
Martyn Hooper's blog about PA and B12 issues
4) B12 Deficiency Info website
Lots of b12 info an an interesting blog about B12 issues
Person who runs website can be contacted by e-mail. Details on website.
5) b12d.org
6) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Up to date with current UK B12 guidelines.
Martyn Hooper is the chair of PAS. He has written two other books about PA and B12 deficiency. I also found his book "Living with Pernicious Anaemia and Vitamin B12 Deficiency" helpful because I could see aspects of my experience in some of the case studies in the book.
7) Book "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.
I am not medically trained, just a person who has struggled to get a diagnosis.
Fab, thank you very much!
Thank you so much for your replies.
I didn't realise that there,was,so much to it to be honest. I've read up on the NHS website but reading your post there's so much more to it.
When I say I need go back to the doctors I think I need to do this sooner rather than later to see what they are going to and also to get further to find out why. I had been told a few years ago about my folate as it was low but nothing much to be concerned about. I will also check the strength of the tablets and let you all know.
I have got the neurological symptoms as in pins n needles, memory and my balance but this could also be coming from fibromyalgia as well.
I think I've also got some reading to do with all of the information you've kindly provided.
Thank you
Jo
"When I say I need go back to the doctors I think I need to do this sooner rather than later"
I'd suggest reading up about B12 deficiency before you go. Some people take a supportive friend/family member with them ....even better if they have also read up about b12 deficiency.
I had to battle for treatment mainly on my own and at times it was incredibly difficult to express myself when dealing with a brain that didn't work properly. My experience is that sometimes doctors are kinder when there is a witness present.
In the past I have sometimes written letters to GPs before an appt, outlining what I wanted to discuss so they had forewarning...appts can be so short. If you have a lot to discuss may be worth asking for a double appointment.
Some people on forum have written letters containing
1) lists of symptoms
I gave PAS Symptoms Checklist (link in above post) with all my symptoms ticked plus I added any neuro symptoms not on list. I wept when I filled it in from seeing the sheer number of symptoms.
2) extracts from relevant B12 documents
I mentioned fbirder 's summary above. There are extracts from B12 documents on B12 Deficiency Info website in section about writing letters to GPs about B12 deficiency.
3) Blood Test Results
My understanding is that letters to GPs are filed with medical records so are a record of issues raised. I think it's a good idea to keep copies of any letters sent.
More about Blood tests
I learnt to always get copies of blood test results after being told everything was normal and then finding abnormal or borderline results on the copies.
Have you got recent results for B12, folate, ferritin and full blood count?
It's your right to ask for copies of blood test results, will probably be a small charge for copies. May take a few days for surgery to organise copies. GP surgery can only refuse copies if they feel that to give them to you could cause you harm.
Some surgeries also have online access to a summary record. Should be info about this on surgery website. It is a summary record and therefore may not have all the info a patient might want to see. More info from links about access to medical records in post above.
Some people on forum get a complete set of their medical records, costs about £50. Can be very interesting to see what has been written in the past.
I read once, (may have been in "Could It Be B12" book) that there is a small window of opportunity to treat B12 deficiency before there is the risk of permanent neurological damage.
"I had been told a few years ago about my folate as it was low"
patient.info/doctor/folate-...
Link above mentions importance of treating any co-existing b12 deficiency when treating folate deficiency. See Management section in link for more info.
"this could also be coming from fibromyalgia as well"
My personal opinion is that in my case my fibro symptoms are caused by an underlying problem with B12. The fibro symptoms improved a lot once I finally got treatment.
B12 deficiency can sometimes be misdiagnosed as a variety of conditions.
b12deficiency.info/misdiagn...
martynhooper.com/2015/08/04...
It's not uncommon for people with b12 deficiency to be labelled as having depression, hypochondria, ME/CFS , psychosomatic problems plus other conditions.
"see what they are going to and also to get further to find out why"
Have you considered contacting PAS (pernicious Anaemia society)?
They are helpful and sympathetic and a source of useful information. PAS may be able to tell you more about oral tablets as a treatment for B12 deficiency.
PAS contact details in post above.
Good luck with trying to get answers. I've been ill for not far off 20 years and wish I'd found out about B12 deficiency sooner.
Unhappy with treatment?
Writing letters about B12 to GPs.
b12deficiency.info/b12-writ...
CAB
citizensadvice.org.uk/healt...
HDA patient care trust
UK Charity that offers free second opinions on medical diagnoses and treatment.
New here would like advice
new here - does any of this sound like PA?
New here and full of questions. Confused and worried.
Im new here...looking for advice on diagnosis and treatment
