My latest blood test depicted a normal level for B12 but the previous two were low.
The doctor informed me, however, that I tested positive for pernicious anaemia.
He did not seem unduly alarmed and has not suggested any further treatment.
Have any other people had similar results etc ?
what does 'no further treatment' mean exactly. Are you receiving injections for B12 deficiency but he's not proposing anything further or ????
GPs tend not to know much about B12 deficiency - the consequence of PA that causes the symptoms - and can be quite confused about what treatment is needed etc.
no injections offered, nothing.
I have my diabetic review next week so will question this further.
Thank you for your reply. .
type 2? on metformin?
if so could be a double whammy on absorption problems.
And overlap with symptoms of diabetes could mean B12 symptoms are being overlooked
hi, I am a type 1 and was diagnosed with PA over 10 years ago. Initially my GP gave me daily B12 intra muscular injections then 3 times weekly and now I have them every 12 weeks. She also prescribed me folic acid tablets 5mg daily as well initially.
it took over 12 months to feel any better and what I tend to suffer from now us iron deficiency anaemia and have recently been put on ferrous fumarate tablets 210mg.
the diabetes which I have had from age 4 makes people up to 3 times more probe to PA.
perhaps your GP is communicating with your diabetes specialist. Be pro active and make sure this is happening.
good luck!
Alison
I contacted the surgery to speak to my diabetic nurse but said she hadn't realised the doctor had spoken to me. she did say that it needed further investigation into treatment. The GP I spoke to initially is not in today but I shall try to speak to him in the morning.
I look so pale and washed out...work has been difficult today due to me feeling so weak.
I feel so weak today and more breathless..only slightly...but I have tried to get an appointment at my own doctors and they are full up for weeks. The nurse had patients so I couldn't speak to her either.
Spoke to a lovely man on the 111 NHS helpline and after a series of questions, he agreed I needed to see someone from the primary care team within six hours.
so I will keep you all posted when I get back...
glad that you have managed to get someone to listen - hope that it works well when you are seen by primary care.
Finally back from the out of hours medical centre. Saw a lovely doctor who was very thorough going over my medical history..checking my BP and urine etc. She even tested my blood sugars which were okay as I control my diabetes very well.
She said there was very little she could do by way of further blood tests but told me I needed to book the appointment with my own GP ..even if its three weeks away..and ring daily to see if there are any cancellations that I can get.
She was reluctant to tell me that my own GP should have discussed a course of injections etc with me as I guess its not ethical to discredit a colleague from another practice but ..reading through the lines..i gather she thought likewise.
I will try and speak to the nurse tomorrow to get a list of my last test results for all my bloods.
It seems that because my last B12 reading came back as normal, they are not concerned about me testing positive for PA. and don't think further treatment is necessary.
So frustrating when its my health that could be compromised in the meantime !
Pleased all went okay š
Think you will have to collect evidence from links in previous replys to demonstrate to your GP that PA should be treated. Which it should.
When you post again, if you start a new post more people will see it (the only people who see replys in a string are the ones you actually reply too - not the whole forum). Then people will be able to pop in to help and also get your updates to see how you're doing š
Good luck with you GP š
yes...I am on metformin twice a day. I had gestational diabetes with my last two children and was on insulin three times a day.(over seventeen years ago) I do not absorb iron and have been on various iron supplements over the past twenty plus years.(I was on Metatone iron tonic at the age of ten !)
I am on other medication for other health issues plus I also have LBBB so this is all rather worrying especially when I read your last sentence !
just wanted to mention that if there is a family history of diabetes it may be worth querying the diagnosis of type 2 - there are actually other forms of diabetes - notably MODY and LADA - about 2% of the diabetic population actually have MODY.
My mother had gestational diabetes and then went on to develop diabetes proper in her mid-late 30s - it was thought to be Type 2 but actually turned out to be a MODY variant (she was involved in a study about 15 years which was looking at the particualar variant). Her father's side of the family has a strong history of developing diabetes between 30 and 45. MODY is a dominant gene which means that if you have the gene you will develop the diabetes though some of the variants can have very low impact and may only be picked up during periods such as gestation when blood sugars are likely to be monitored more closely.
You can find out about the different forms of diabetes here
diabetes.co.uk/diabetes-typ...
I was adopted as a child and have no known medical history.
sorry to hear that
- may still be worth looking into - particularly if you weren't presenting as being overweight when diagnosed with diabetes - as it may affect your children and would affect the treatment that was most appropriate to you - though if your blood sugars are well controlled by the metformin it would imply that a misdiagnosis isn't an issue.
Hi Yvonneu. If you tested positive for PA you definately have pernicious anaemia...pernicious anemia causes B12 deficiency...always...you should be treated with B12 injections for life..and if you have neurological symtpoms, you should be prescribed an intensive regime of B12 injections (see BNF guidelines in the link below) to prevent potentially irreversible neurological damage.
Because you have PA, your body cannot absorb vitamin B12 in the usually way, so your B12 will get lower and lower until it eventually runs out. Once you have been diagnosed with PA, treatment with B12 injections should commence immediately.
GP's are ill-informed about B12 deficency and PA and to fail to treat your PA is wrong. Very wrong. You will eventually...inevitably...suffer the symtpoms of B12 deficiency...you might even have them now but not realise it (some people have symtpoms which they don't realise are symtpoms). Check the symtpoms list in the links below.
I'm copying some links below that will give tell you all you need to know about the treatment of B12 deficiency and PA. The information will help to understand what your GP should be doing for you so that you can approach him and ask for the treatment you should be getting. And you can show him the information to support your request (in particular, the BNF treatment regimes in the first link - neurological regime is the second item down).
Good luck...let us know how it goes and post again if you need more help...especially if you have trouble getting your GP to treat you.
š
LINKS TO GUIDELINES AND INFORMATION
evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)
pernicious-anaemia-society.... (PAS Symptom Checklist)
stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)
onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert)
stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)
stichtingb12tekort.nl/weten... (Testing B12 During Treatment)
stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency ā Good to know before seeing GP)
stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)
stichtingb12tekort.nl/weten... (B12 Deficiency, PA, & Relationship (or not) to Anaemia & Neurological Symptoms)
š
Thank you so much for your reply. Will check out the links then contact my GP .
I shall keep you posted of events as they unfold.
š Good luck...come back if you need more help or advice....lots of lovely knowledgeable folks here to help and support you š
There's more information in the PAS pinned posts to,the right of the page when you log on (at the bottom if using a phone).
Two good books to read are Martyn Hooper's 'What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficeny and Sally Pacholok's 'Could It Be B12 An Epedemic of Misdignoses'
Also see the Pernicious Anaemia Society website and B12.deficiency.org for more information.
Also - people with PA often suffer with other vitamin deficiencies due to absorption problems. So...ask,your GP to check the following:
Folate levels - folate and B12 work together so if folate is too low the body cannot utilise B12 propery (levels need to be in top third of the reference range - your GP may not know this.
Ferritin levels - low ferritin can result in iron deificiency aneamia which can make you feel very ill indeed. Levels need to be 80 - 100.
Vitamin D - many suffer with low levels - again, van make you feel very ill.
GP should also do a FBC (full blood count).
Gp's often say blood test results are normal when they're not. Bumping along the bottom (or the top) of the reference range is not good enough - though GP's often seem to think so š.
Always ask for copies of,your blood test results (you are entitled to these) and if you want to post the result (together with the reference ranges) people here will be be able to help with interpretation.
š
yes..i will ask for my latest results as I had a very recent FBC in readiness for my diabetic review which is in next couple of weeks.
Thank you so much.
If you have problems absorbing iron - which is implied in one of your other responses then this will tend to make your blood cells smaller where as the anaemia caused by a B12 deficiency tends to be larger - you may need to point out this complicating factor to your GP as they are often fixated on macrocytosis (large red blood cells) having to be present if there is a B12 deficiency - though at least 30% of people with a B12 deficiency actually present with other symptoms long before they present with macrocytic anaemia.
this article may be useful in relation to interactions between diabetes and B12 deficiency
Are you in UK?
I'd suggest contacting PAS (Pernicious Anaemia Society). They can sometimes intervene on behalf of members by writing letters.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717
this link may also be of use.
b12deficiency.info/b12-writ...
yes I live in the UK and have contacted the PAS and received some valuable information from them. Thank you
just read on here that it suggested that the person fasts before being tested? No mention of this was made to me when I had the blood test.
Have absolutely no wish to add to your woes - but I am wondering if you have had your Thyroid correctly tested.
So many conditions are linked - not least the PA and Diabetes with low thyroid/ Hashimotos. An auto-immune connection perhaps ? Reading some of your other posts elsewhere had me pondering.
I am not a Medic - but a Hashimotos girl with a B12 issue š Happy to help.
Thank you for your reply..they did test my thyroid levels at the back end of last year and they said they were fine. Will google Hashimotos as not heard of that !
Thank you again.
Yes they say fine when they mean in range. It is where you are in the range that is key. Also what did they test ?
You are legally entitled to have copies of all blood test results.
Full testing is - TSH - FT4 - FT3 & Anti TPO & Anti Tg. They often only test the TSH which is only a small part of the story .....
Having been on the Thyroid Forum since 2011 I have read too often about the poor understanding of the thyroid testing.
what an uphill battle this is !
Pernicious anaemia 
Testing B12 and Pernicious Anaemia
NOT Pernicious Anaemia?
B12 levels fluctuating?
