Hi I went to see the nurse recently as I was loosing lots of hair, felt tired all the time and just felt like something was off. I have been diagnosed previously with underactive thyroid so thought it was that. Blood test revealed b12 level of 144 as well as low vitamin D. I was advised to take oral supplements and re test my blood in 3 months. Does this sound correct? I have felt awful for such a long time and have such thin hair that I was hoping for b12 injections to improve things. Am I wrong? I also noticed on my blood test print out low hematocrit which if I understand right means I'm anemic. Does this indicate pernicious anemia? I'm so confused I hope someone here can help me.
B12 low told to start oral treatment - Pernicious Anaemi...
B12 low told to start oral treatment
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Pugladymum
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So sorry you are suffering so! Low hematocrit is definitely a form of anemia and can be caused by any number of different issues. The low hematocrit, itself, will not pinpoint PA; however, with your lower B12 level, it is a possibility. You may have an absorption problem unrelated to actual PA but it could cause the same exact results. It sounds like your GP is taking a conservative approach with oral supplements. Did you request a trial of B12 injections? It can be difficult to talk to some GPs, others might honor a request for a trial. If I were in your shoes, if oral supplementation does not help (or hasn't helped if you have already tried it for yourself), I would most definitely request the B12 injections. Even if your serum levels increase, you may be deficient on a cellular level. A lot of info on this forum and on the PAS website. If you join the PAS, they may be able to help you to better communicate with your GP if you feel that you need support in doing so. They also have resources for both patients and medical professionals that can be downloaded and brought to an appointment. Some GPs are receptive, some are not.
Here are some pages on this forum with multiple links to other resources:
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
Hope you find the right answers and treatment for your health concerns.
Thanks for your reply. I did ask for injections but she said they are told to try this method first from bcsh guidelines. Will taking oral supplements bring the levels up quickly I've been told to take 100mg daily
If you are able to absorb it readily both through the digestive tract and into the cells, it can help greatly. Have you been prescribed 100mg or 100mcg? (It takes 1000mcg to equal 1mg.) I ask because 100mg is a very high dose (100mcg would be a very small dose).
Hi the nurse wrote it down for me it definitely says 100mg should I not take it? I have no idea why I'm low in the first place so I don't really know if I have an absorbson problem. I don't believe it is my diet though.
I don't think you would have any problem with that. My concern was that 100mcg would be too low. It sounds like she is trying hard to bring your B12 level up which is a good thing.
Hi,
Blood test revealed b12 level of 144
Was that 144 ng/L?
Do you have the reference range for B12.?
A typical UK reference range would be 180 - 900 ng/L but they vary according to which area of UK, you are in.
UK national guidelines suggest treatment for those who are under 200 ng/L or those who are symptomatic for B12 deficiency with an in range result.
"I was advised to take oral supplements and re test my blood in 3 months. Does this sound correct?"
Not necessarily...in UK, oral B12 tablets are only recommended for a B12 deficiency due to diet.
If your level is 144ng/L that seems very low to me and I would have thought you should have been started on B12 injections.
I'm guessing your GP has assumed that your low B12 is due to diet but there are many other causes of B12 deficiency eg PA, Coeliac, H pylori infection and others.
Do you eat plenty of B12 rich food eg eg meat, fish, shellfish, eggs, dairy, foods fortified with b12? A vegan or vegetarian diet can be a risk factor for developing B12 deficiency.
If yes to a b12 rich diet then diet as a cause is less likely and it is more likely that there is absorption problem in gut eg PA, Coeliac, H pylori and other possibilities.
If B12 deficiency is untreated or under treated then there is a risk of further deterioration including permanent neurological damage.
1) UK recommended treatment for B12 deficiency without neuro symptoms is...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment for B12 deficiency WITH neuro symptoms is...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
This pattern applies whatever the cause of b12 deficiency even diet.
Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, numbness, limb weakness, migraine, restless legs syndrome RLS, memory problems, balance problems, clumsiness, dropping things, word finding problems and others?
If yes, then my understanding of UK national guidelines is that you should be on second treatment pattern.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Some B12 links that may be helpful below....
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Have you had tests for PA?
Tests for Coeliac disease?
NICE guidelines Coeliac Disease recommends that anyone with unexplained b12, folate or iron deficiency should be tested and anyone with first degree relative with Coeliac.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
H Pylori infection?
patient.info/digestive-heal...
Exposure to Nitrous Oxide
gov.uk/drug-safety-update/n...
Any chnace of internal parasites eg fish tapeworm? Do you ever eat raw fish eg sushi/smoked salmon etc?
There are other parasites that can lead to b12 deficiency eg Giardia Lamblia.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
BNF Children
bnfc.nice.org.uk/drug/hydro...
NICE CKS
cks.nice.org.uk/anaemia-b12...
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".
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
If you think PA is a possibility, worth joining and talking to PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no 01656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
Blog post about how PAS can support PAS members seeking PA diagnosis
martynhooper.com/2017/06/24...
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
B12 Deficiency Info website
B12 Awareness (US website)
B12d.org holds support meetings near Durham, UK
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
Access to Medical Records (England)
nhs.uk/NHSEngland/thenhs/re...
Blood tests
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count and Blood Film
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
Iron Studies
labtestsonline.org.uk/tests...
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society.... See page 2 of articles.
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Referrals
1) Has gp referred you to a neurologist if neuro symptoms present?
2) Has GP referred you to a haematologist if neuro symptoms present? See NICE CKS link (up page)
3) Has GP referred you to a gastro enterologist if gut symptoms present? Gastro specialist should be able to spot signs of gut damage from PA, Coeliac etc.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Lots of useful b12 info in above link. Worth a look.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Warnings....
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.
nhs.uk/common-health-questi...
I am not medically trained. More B12 info in pinned posts on this forum.
Wow thank you so much for your help there is a lot to get my head around but I'm very grateful to you.
Yes my level is 144 ng/L and the range in my area is 120-900.
The nurse said 100mg daily she wrote it down for me so I knew which one to buy I'm also supposed to start 25mg of vitamin D. It is not my belief that this is diet related at all I regularly eat most of the items on the list and I'm not following an extreme diet or vegan.
I do get numbness and pins and needles aching limbs, brain fog, forgetfulness, word finding problems extremely tired all the time. I also get bloating, gas and constipation. I have also had problems with disrupted menstrual cycles which I'm not sure if there is any link. I think I may have celiac disease. The nurse didn't really seem concerned about my symptoms or the reasons as to why I might be deficient.
I am worried by what I read online about damage being permant if treatment isn't started quickly. My mum had ms and I've herd is a link between it all. It's really got me worried to be honest. I do find it very difficult sometimes to trust doctors as my mum was going back and forth to the doctors for a long time but was always told it was her ms when she did in fact have a brain tumour that killed her she was only 52. Should I go back for a second opinion armed with a few more facts? I'm worried that the amount she told me to take is also wrong now.
Hi,
"I do get numbness and pins and needles aching limbs, brain fog, forgetfulness, word finding problems extremely tired "
Does your GP have a list of all your symptoms, especially any neurological symptoms?
Is GP going to refer you to a neurologist?
Sometimes you have to nudge GPs into making a referral request. In these cash strapped times they can sometime be reluctant to refer someone
Has GP written to a haematologist ?
See NICE CKS link below which recommends GPs seek advice from a haematologist for those with B12 deficiency with neuro symptoms.
cks.nice.org.uk/anaemia-b12...
" also get bloating, gas and constipation"
"think I may have celiac disease"
If Coeliac is suspected then I would have thought GP would refer you to a gastro enterologist.
Sadly seeing a specialist is no guarantee of B12 deficiency being recognised...I saw multiple specialists, had typical symptoms and only one raised it as a possibility.
Fingers crossed you get a good one if you see a specialist.
"Yes my level is 144 ng/L and the range in my area is 120-900."
You seem to be in an area of UK that has a very low limit to ref range so making it very difficult to get a diagnosis of B12 deficiency.
I suggest you track down the guidelines for your area of UK and compare them with national guidelines eg BSH, NICE CKS, BNF ( see links in my first post).
UK national guidelines/articles make it clear that people who are symptomatic for b12 deficiency should be treated even if B12 is within range.
I'm sorry to read about your mum.
B12 deficiency is sometimes misdiagnosed as MS as some symptoms are similar and both can lead to demyelination of nerves.
"Should I go back for a second opinion armed with a few more facts?"
I think that is a good idea but suggest you think about first....
1) joining and talking to Pernicious Anaemia Society and asking about info on PA you can pass on to GP. PAS can talk to you about PA symptoms and how it is diagnosed in UK.
pernicious-anaemia-society....
It's best to phone them.
If you join PAS, you can access details of PAS support groups in UK. Support groups can be useful sources of info on helpful GPs and can offer emotional support etc. You do not need a confirmed diagnosis of PA to join.
PAS membership
pernicious-anaemia-society....
2) contacting Coeliac UK to ask for advice and also think about reading NICE guidelines on Coeliac disease so you know what tests GP should order.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
3) writing a brief as possible, polite letter to GP expressing your concerns.
In UK, letters to GP are supposed to be filed with medical notes so are, in my opinion ,less likely to be ignored than info passed on verbally or on photocopies.
Letters could contain symptoms list, test results, relevant family/personal medical history, extracts from UK B12 documents, referral requests, requests for particular blood tests etc
Link about letter to GP if symptomatic for B12 deficiency with an in range B12 result
b12deficiency.info/b12-writ...
Link about letter to GP if being under treated for B12 deficiency with neuro symptoms
b12deficiency.info/b12-writ...
Links above have a lot of useful b12 info and also have letter templates that you can base your own letters on.
Some GPs can be irritated by a patient writing letters but I gave up worrying about irritating GPs when I realised I was headed for dementia and spinal damage if i didn't get treatment soon.
4) Changing GPs if your current GP is unhelpful.
nhs.uk/common-health-questi...
I stayed far too long and trusted GPs far too much at one practice and was on the brink of total physical and mental collapse.
There is a window of opportunity to avoid permanent damage from b12 deficiency so don't delay seeking support. There is a risk of permanent spinal damage (SACD) if B12 deficiency is under treated.
"The nurse said 100mg daily she wrote it down for me so I knew which one to buy"
Oral b12 supplements are only recommended for dietary B12 deficiency in UK. GP should know this.
Does your GP have a written copy of your typical weekly diet showing that you eat meat, fish, eggs etc? This might help them to see that your low B12 result is unlikely to be due to diet.
The problem with taking low dose oral b12 is that it may just nudge your B12 results a bit higher but it's unlikely to be enough B12 to prevent further deterioration especially as you already have neuro symptoms.
From what you say, I think dietary deficiency is less likely (I'm not medically trained) and it's more likely that there is an absorption problem in gut (you mention gut symptoms).
With neuro symptoms present, my understanding is that you should be on every other day loading jabs for as long as symptoms continue to get better, then a jab every 2 months.
Your GP can read this in BNF (British National Formulary) book Chapter 9 Section 1.2
BNF info is also online.
BNF
bnf.nice.org.uk/drug/hydrox...
Other blood results
Best advice I ever got was to always get copies of all blood test results.
Most UK GPs surgeries will have online access to a summary of test results/records. Look on your GP surgery website for Patients Access, Emis Access or Online Access.
You can also request access to your paper records, this may need written request to practice manager.
I look at particularly at B12, folate, ferritin ( or other iron tests), and full blood count FBC.
There can be useful clues on FBC results as to possibility of B12 , folate or iron deficiency. See links in first post about Macrocytosis and Full Blood Count.
You could check your past results to see if you've ever had an Intrinsic Factor Antibody (IFA)test which tests for PAor tests for Coeliac (tTG IgA and Total IgA).
Can you take someone with you to appointments who is supportive and will speak up for you if your brain is foggy? Even better if they have read about b12 deficiency.
Some on forum resort to self treatment if unable to get appropriate treatment from GP. I feel this is an absolute last resort though.
Hi,
Forgot to say
"I did ask for injections but she said they are told to try this method first from bcsh guidelines.
"They" are not told to do this in BSH Cobalamin and Folate Guidelines if neuro symptoms are present.
If neuro symptoms present, BSH guidelines recommend treatment according to BNF guidance which is B12 injections.
I suggest reading whole of BSH Cobalamin and Folate Guidelines if you haven't already done so.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
On page numbered 500, under Recommendations it says that any patient with anaemia, neuropathy or glossitis should be given an IFA Intrinsic actor Antibody test.
Tingling, pins and needles would usually be termed symptoms of neuropathy.
Glossitis is inflammation of the tongue.
Paraesthesia is abnormal sensation due to damage to peripheral nerves eg tingling, pins and needles, also formication (insect crawling sensation).
See flowchart from page numbered 502.
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
I think the treatment pattern you were given is for patients without symptoms such as anaemia, neuropathy/paraesthesia, glossitis. See flowchart from page numbered 503.
Your B12 result was less than 150ng/L so my understanding is that they should still have used the flowchart from page 502 not the one from page 503.
Hi. I write as a scientist, not a medic. My speciality is Haematology. I apologise for droning on.
Hematocrit, or Packed Cell Volume [PCV] is the proportion of your blood consisting of red cells. It closely reflects what the Haemoglobin [Hb] tells you. The MCV will generally give some indication of what's underlying. A raised MCV raised generally indicates a megaloblastic anaemia which may be due to either B12 or folate lack, or perhaps both. A low MCV indicates microcytosis, which is generally associated with iron deficiency. However, the presence of a thalassaemia gene will cause a reduction in the MCV which can be misinterpreted as iron deficiency. It will also depress the degree of elevation in megloblastosis. That's why it's important to test for iron status as well as B12 and folate. When a normal Hb is seen with a consistently reduced MCV, then the underlying cause should be considered. Thalassaemia genes pop up in the most unexpected corners of the population. I hope this helps.
I'm going to get an appointment to see a different doctor and see if I can get any further thank you to everyone who has taken the time to respond it's really helpful to hear from you all. I will post again when I've seen the doctor
Hi Pugladymum, I’m also losing a lot of hair and it has been picked up on my blood tests that my B12 and folate are below range. I have to have b12 injections and take folate supplements. Can I ask, did your hairloss come on quite suddenly?
Yes my hair loss was sudden I also feel my strands are thinner and it also breaks very easily. It's so distressing and has made me very self conscious. I get really self conscious when I'm at my zumba class because as I get hot my scalp is very visible . I don't want to stop but it looks terrible. The forgetfulness is awful too. At work I am struggling. I work in a cafe so interact with the public all day. I can't get my brain and mouth to match. I go to read out how much they owe and my mouth just can't say the words. It's really scary especially when I didn't know what was causing it. I really hope the new doctor listens to me
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