hi everyone,
I’ve finally got all my results back.
So have haematocrit of 0.457 slightly high
MCV 101.1 (showing enlarged red blood cells)
Active B12 low (34.3 pool/l)
Intrinsic factor antibodies negative
Gastric parietal cell antibodies negative
Any advice on next steps would be appreciated- take vitamins including b12 and eat meat
Thanks 🙏
Hi,
If I've understood correctly, you have a below range Active B12 result even though you take supplements including B12 and you eat meat.
Have you got recent results for folate, ferritin (and other iron tests) and Vitamin D?
People here often report deficiencies in these as well as B12.
It's also quite common here to have thyroid issues. Thyroid UK forum on HU is a good place to ask questions.
Folate and iron and b12 all help the body to produce healthy red blood cells.
Link about writing letters to GP about B12 deficiency. It has letter templates.
b12info.com/writing-to-your...
Blog post about being symptomatic for B12 deficiency with normal range serum (total) B12.
b12info.com/your-serum-b12-...
"Intrinsic factor antibodies negative
Gastric parietal cell antibodies negative"
It's still possible to have PA with negative blood test results although hard to get some GPs to consider this.
GPCA cells produce intrinsic factor. Intrinsic factor helps the body to absorb B12.
In PA, GP cells are lost and if someone has had PA for a long time then it's possible that few or no IF antibodies are produced and few or no GPC antibodies because there may only be a few or even no GP cells left.
Thread about tests for PA and B12 deficiency
(discusses other tests that can help to diagnose PA).
healthunlocked.com/pasoc/po...
If you think PA (Pernicious Anaemia) is a possibility then worth joining and talking to PAS (Pernicious Anaemia Society).
You do not need a PA diagnosis to join.
PAS membership is separate to membership of this forum.
pernicious-anaemia-society....
PAS website has lots of useful leaflets/support groups/members support helpline/page for health professionals etc.
Is the GP looking at other conditions that can cause B12 absorption problems eg Coeliac disease?
Coeliac UK have info on diagnosis.
Search for "NICE guideline Coeliac disease" if you have time. This document suggests that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.
coeliac.org.uk/information-...
Maybe have a look at these links about causes and risk factors for PA and B12 deficiency.
Do any of them seem likely?
pernicious-anaemia-society....
theb12society.com/causes-an...
Symptoms
Has your GP got a list of all your symptoms. Try to include any neuro symptoms.
I used PAS list below and added extra symptoms at bottom of page.
This one is more for public.
pernicious-anaemia-society....
This one is more for health professionals and uses medical terms.
pernicious-anaemia-society....
Other B12 deficiency symptoms lists
theb12society.com/signs-and...
b12info.com/signs-and-sympt...
GUTS UK have lots of info on gut conditions.
I think you mentioned tingling/ dizziness/numbness/banging into things/clumsiness on your other thread.
These are usually considered to be neuro symptoms.
Do you have other neuro symptoms eg tinnitus, pins and needles, other strange skin sensations, migraine, involuntary movements eg jerks, twitches, tremors, brain fog, memory problems, problems getting the right words out when speaking, incontinence etc?
B12 deficiency requires prompt treatment with enough B12. Delayed or inadequate treatment can increase the risk of developing neurological problems. In severe cases the spinal cord can be affected.
B12 deficiency can cause damage to the myelin layer around nerve. Damage to nerves is called neuropathy.
Folate deficiency can also cause nerve damage but I think this is rarer.
NHS link about peripheral neuropathy.
nhs.uk/conditions/periphera...
Has your NHS GP seen these private results?
Might also be useful to have MMA and homocysteine tests.
Look up Functional B12 deficiency when you have time.
GUTS UK have lots of info on gut conditions.
I left other useful info on your other forum thread from about 10 days ago including links to threads where I left detailed replies.
I'm not medically trained.
Thankyou so much for your reply.
Iron and vitamin D both in range.
Liver, kidney and heart health all good.
Diabetes negative.
Waiting for thyroid test
I’m making an appointment with my GP but was waiting for all results. Really trying to gather as much ammunition as possible.
My main issues apart from the headaches and pins and needles are nerve pains in my legs - even after rest and tend to just switch from one to the other. Also more often fuzzy head whilst running - having to stop and walk occasionally and only running 5ks now. This time last year I was running 10 and 15 regularly then a half marathon last April.
Still going crossfit too but again some dizziness with exertion guessing linked to my MCV level.
I’m really worried my GP will fob me off because I am really quite fit and healthy for 46 female!
I looked at a lot of the stuff you sent Thankyou - and yes a little overwhelming. I’ve been writing points down to try and engrain them in my head before seeing GP because I do forget things, can’t find the word etc
I will be joining the PAS
Thankyou again
Your symptoms and mcv are consistent with b12 deficiency. Fatigue is one of the most common symptoms. Your active b12 level is also consistent with b12 deficiency.
There is an online b12 deficiency symptoms checker also see B12d.org.
Given that you take b12 this suggests that you have an absorption problem and may need injections to treat any b12 deficiency.
The antibody tests can confirm PA but cannot rule it out as they pick up less than 50% of cases.
Given that b12 is very safe a trial to see if you respond is a possible option Your GP might agree to.
Maybe give yourself a break for a week and then read a little bit every day over a couple of weeks.
The reason I post so much info is that I suffered for many years and want people to avoid what I went through...to have the info they need to get the treatment they need.
"I’ve been writing points down to try and engrain them in my head before seeing GP because I do forget things, can’t find the word etc"
Have you got a supportive friend/family member who could help you at appointments and to read through info below.
You could ask to record your appt. Some GPs are not keen on this.
Maybe write a short letter to GP or Practice Manager, asking to record next appt and giving reasons for recording. A reasonable GP should agree. Memory problems, brainfog, fatigue would all be good reasons for GP to agree.
PAS helpline
If you have time before your next appt and you've joined PAS, I'd suggest ringing their Member Support helpline. You need to log in to your members account to get the helpline number.
pernicious-anaemia-society....
They can give support and hopefully can recommend info to pass to GP.
I'd suggest reading this PAS leaflet and there are other useful ones. If you join PAS you could print some out for GP.
Helpsheet for Patient-GP Discussion
pernicious-anaemia-society....
Have you considered putting the main points into a letter to GP and making sure they receive it before your next appt?
Being assertive and challenging decisions can put strain on GP/patient relationship so be prepared for this. I had some difficult experiences with health professionals.
Best to keep letters as brief as possible as I think this means more chance of GP reading it.
See Point 1 and Point 5 in the letter writing link below.
b12info.com/writing-to-your...
It's my understanding that GPs are supposed file letters with medical notes although I can't find this info online. To make sure any letter gets filed you could include a request in the letter to do this. Always keep a copy for yourself.
One way of checking it has been filed is to ask GP to bring the letter up on their screen.
Maybe take a copy with you to appt. in case it hasn't been filed.
A letter to GP could include some of the following (but keep it short)
1) Might be worth mentioning neurological symptoms suggestive of B12 deficiency and that BNF (British National Formulary) suggests every other day loading injections for as long as symptoms continue to get better then injections every 2 months.
GP can find this info in their BNF book Chapter 9 Section 1.2 or in online BNF entry on hydroxocobalamin. Search online for "BNF hydrococobalamin" if you want to read it.
2) B12 deficiency symptoms list (PAS list is a good one).
3) Relevant test results eg
below range Active B12 test
above range MCV ( suggests macrocytosis - enlarged red blood cells)
4) Relevant personal and family history eg autoimmune conditions in family.
Is there a family history of PA/B12 deficiency/Coeliac disease etc?
5) List of other risk factors/causes for PA/B12 deficiency.
6) Quotes from UK health documents that indicate you should be treated.
Look at NICE B12 deficiency guideline/NICE CKS Anaemia B12 and Folate deficiency/B12 guidelines used by your ICB/Health Board.
GPs may not accept results of your private blood tests. If this happens you could ask them to repeat these tests on NHS.
Anticipating what GP will say
Try to think about main points you want to say/write to GP and what GP might reply.
For example
If GP says they don't do Active B12 test then maybe point out that the new NICE B12 deficiency guideline suggest that GPs should consider testing Active B12.
If GP says that symptoms do not suggest B12 deficiency, maybe pass them PAS list with symptoms ticked.
If GP says that previous serum B12 results were normal range so B12 deficiency is not possible....
a) Maybe ask about functional B12 deficiency. If they don't know much about this then perhaps hand over some info.
MMA, homocysteine and Active B12 tests can help to diagnose functional B12 deficiency.
b) Search for "Turner SACD functional B12 deficiency". This should show an article where a patient developed spinal cord damage from B12 deficiency even though serum B12 was normal.
Self treatment
Many UK forum members cannot get the treatment they need from NHS and they turn to self treatment.
Some get extra B12 injections privately, some try high dose oral B12 but this doesn't work for everyone (didn't for me) and some as a last resort turn to self injection.
If people treat themselves without a confirmed diagnosis it can make it hard to ever get a diagnosis from NHS.
If you search for "Survey UK B12 self injection" it should show a research article about people who self inject B12. I found it interesting to read the patients' reasons for doing this.
"Iron and vitamin D both in range."
Have you seen the actual NHS results for these?
I always check for myself these days as in past have found abnormal and borderline results.
patients-association.org.uk...
Did you have a full set of iron tests or just ferritin?
Link about iron tests
labtestsonline.org.uk/tests...
Have you looked at NHS results for Full Blood Count tests over last few years?
Results that are increasing or decreasing over time, might be significant even if still within normal range.
Link about Full Blood Count
labtestsonline.org.uk/tests...
I stayed far too long with a practice that didn't listen, didn't understand B12 deficiency and refused to give me adequate treatment.
Changing GPs
nhs.uk/nhs-services/gps/how...
I was forced to treat myself as by then I had developed dementia symptoms, spinal symptoms and many other neuro symptoms.
I don't have a PA diagnosis but at my worse had over 50 typical symptoms and couldn't get treatment. PA tests and Coeliac tests were negative and while I think it's possible I might have Antibody Negative PA, these days I suspect I have some genetic problem with metabolising B12 or its co factors eg folate.
The document below has been superseded by the NICE B12 deficiency guideline but might be useful to read as it mentions Antibody Negative PA. I prefer it to the NICE B12 deficiency guideline.
Search for "Wiley BSH B12 Folate guideline" to find it.
Folate been tested yet ?
Unfortunately not
Might help to know what this is doing - even if it is fine.
"Within range" is not necessarily the same as fine - and even if it is well within range, that's one thing to rule out, and you'll also know your own "normal".
Might also help to have your methylmalonic acid (MMA) tested, but more difficult from primary care.
Scientist, not medic.
Something's causing the macrocytosis. A look at all of your FBC data [including reference ranges] might shed more light on this. The usual causes of macrocytosis are a lack of B12, or folate, or both; alcohol consumption, or thyroid issues. All of these will respond to treatment once you know what's causing it. Do you have some historical results that show a normal MCV?
Good luck!
The last time I had blood taken was when my son was born 21 years ago 🤣 so unfortunately no other results to compare to.
I do recall being told with both my pregnancies that I was borderline anaemic and was being monitored- both babies born 4 weeks early and very quick labours. But I can’t remember why I was borderline and my iron now is at a very good level
My suspected IBS started when I was heavily pregnant with my daughter 28 years ago , was completely fobbed off by GP at the time so I just dealt with it the best I could. Fiber sachets did nothing. Could never pinpoint any triggers just popped up when it wanted. Sometimes so bad I’d be woken in the night with the pain and next 3 - 4 hours on the toilet and being sick into a bucket. Seems less often now I do more exercise
I don’t drink enough alcohol for this to be an issue, 2 glasses of red on a Wednesday and a few beers on a Saturday
Once my thyroid test is back I will call my GP
As always Thankyou for responding, it’s nice to be able to offload
You're lucky to have escaped the 21g x 1.5" needle for so long then, that's all I can say... I used to use them on patients when I worked in the NHS.
Having bairns is a good way to become iron deficient, as the sprog hoovers up the iron in your body, to avoid being born anaemic. Most folks recover after delivery, given a normal diet.
2 glasses or red on a Wednesday? For me, that's Sunday. A couple of glasses of white on a Friday, and maybe a snifter of stuff during the week, but not every night.
I hope they sort you out soon.
Just leaving this for Lola246
Patient Info website has an article about macrocytosis for patients.
patient.info/allergies-bloo...
They also have an article about macrocytosis for health professionals.
Methylmalonic Acid level of 462 nmol/l
letter just recieved 
Autoimmune Atrophic Gastritis and Pernicious Anaemia
Help with understanding test results, please?
