please could I ask if anyone knows the name of a good lab for testing b12 and vitamins …. Have my vegetarian son in mind as I am sure he’s presenting with some low b12 symptoms …. Fatigue …. Depression and anxiety … insomnia … sickness etc …. He’s just started a new job and is not coping well. So trying to get some things to help. He’s just started sertraline also after speaking to GP ….. re anxiety etc ….. so after suggesting many times that he might consider b12d ….. I now have convinced him it’s worth a test. His b12 was about 600 ish in 2017 ….. but he may be lower now …. Just desperate to help him …. Thankyou for any help
b12 and other testing : please could I... - Pernicious Anaemi...
b12 and other testing
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Delilahmy
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I also would like to know where to get an active B12 test in the Merseyside area with results that GPs don't dismiss. I've heard the at home finger prick tests aren't very good its best to get blood drawn
Hi,
There is a high street chain of chemists (not Boots) that offers B12 testing.
If you search online for "private blood tests uk" that should also show places.
The problem with getting private blood tests is that NHS doctors may not accept the results.
However a significant result in the private blood tests may persuade NHS GP to repeat the same tests.
I'm posting a lot of information so I suggest you take at least a week to look through it so it's not so overwhelming.
Some links may have details that could be upsetting.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Blog post about being symptomatic for B12 deficiency with normal range serum (total) b12.
b12deficiency.info/your-ser...
Are his symptoms consistent with B12 deficiency?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (from B12 Institute Netherlands)
Does he have any of these risk factors?
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Next link about causes is from a Dutch B12 website
b12-institute.nl/en/causes-...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates covering a variety of situations linked to B12 deficiency and can help people write their own letters to GP.
Point 1 is about under treatment of B12 deficiency with neuro symptoms present.
It's vital to get adequate treatment. Inadequate treatment can increase the risk of developing permanent neurological damage. There have been people on this forum who have developed spinal cord damage from delayed or inadequate treatment.
If PA is a possibility, it's worth joining and talking to PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS membership is separate to membership of this forum.
Testing for PA
pernicious-anaemia-society....
Two useful b12 books
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
UK BNF treatment info in book is out of date. See BNF hydroxocobalamin link for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Some UK B12 deficiency documents/articles
NHS article about B12 deficiency (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (detailed/aimed at health professionals)
onlinelibrary.wiley.com/doi...
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BNF link below outlines two patterns of treatment for B12 deficiency in UK
1) for those without neurological symptoms
2) for those WITH neurological symptoms
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published later this year (2023)
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment(lots of pages).
Local B12 deficiency guidelines
I urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board as GPs are likely to refer to these when treating someone for B12 deficiency.
Some local B12 deficiency guidelines are unhelpful so good to know what you're up against.
See blog post below.
b12deficiency.info/gloucest...
CCGs (Clinical Commissioning Groups) were replaced by ICBs in England in July 2022.
List of ICBs in England
nhs.uk/nhs-services/find-yo...
If you can't find the local B12 deficiency guidelines online or on this forum then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 Deficiency guidelines are being used locally and for a link to or copy of them.
Misconceptions
Many on the forum have met health professionals who lack a good understanding of B12 deficiency.
I think it's worth knowing some of the common wrong ideas some health professionals have about B12 deficiency in case you meet one of the ignorant ones.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
There is more information I could post so let me know if you'd like me to post more.
I'm not medically trained.
Thankyou
Sleepy bunny for your very informative reply …. Links are a great help. I myself SI as am treating b12d …. I have seen the Sally patchlock film too and see so many connections in my sons health …. I am sure it’s an area he needs to look at so private testing seems the way to go as the GP says he’s in range. That was back in 2017 ! It won’t hurt to look xxx
Hi again,
You might find it helpful to look at this thread I started on Patient Safety.
It has lots of useful UK links for people who've had difficult health experiences.
healthunlocked.com/pasoc/po...
"I have seen the Sally patchlock film too and see so many connections in my sons health …. I am sure it’s an area he needs to look at so private testing seems the way to go as the GP says he’s in range"
UK guidance suggests that people who are symptomatic for B12 deficiency should be treated even if serum B12 is within normal range.
Summary of BSH Cobalamin and Folate guidelines says
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
I interpret this as meaning if you have the symptoms of B12 deficiency, you should get treatment.
pernicious-anaemia-society....
Maybe your son could show the BSH summary to his GP along with a list of symptoms.
I used the PAS list below and added extra symptoms at the bottom.
pernicious-anaemia-society....
Here are a few other quotes that might be worth including in a letter to GP.
From NHS link about B12 deficiency
"Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood."
nhs.uk/conditions/vitamin-b...
From NICE CKS B12 deficiency and Folate deficiency
Quote below comes from Signs and Symptoms section.
"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."
cks.nice.org.uk/topics/anae...
See Point 5 in letter writing link below about being symptomatic for B12 deficiency with a normal range serum B12 result.
b12deficiency.info/writing-...
It may also be worth pointing out to GP that untreated or undertreated B12 deficiency can affect spinal cord.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
Thankyou so much Sleepybunny I will read through these …. Trying to manage the day with my son and stay near him as I feel he is pretty critical with anxiety at moment …. I want to help him best and as soon as I can x he’s soo low with mental health symptoms…. as that’s high priority but I’m hoping to find some underlying organic cause as his response to his new situation is quite overwhelming causing very physical symptoms. He has had sore scalloped tongue for years …. Fatigue … anxiety …. Bladder problems/ urgency …. …. Has been lifelong vegetarian with pretty poor diet over last few years mainly pasta/ cheese … all vitamins need a look … he had raised DDimer a couple of years ago which they were querying whether he had an embolism ? Anyway catalogue of things that may have an underlying cause …. Thyroid ruled out …. Thanks again Sleepybunny
A lot of those symptoms can be found on lists of B12 deficiency symptoms.
Links about B12 deficiency and mental health
b12deficiency.info/mental-h...
stichtingb12tekort.nl/engli...
NHS link about Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency. Bladder issues are mentioned in above link.
"Thyroid ruled out"
What thyroid tests did he have?
In UK, GPs often only test TSH which won't give a full picture of thyroid function.
There are other thyroid tests a GP or specialist can order.
thyroiduk.org/thyroid-funct...
Might be worth him putting any thyroid results on Thyroid UK forum on Health Unlocked.
you could have a look online at monitormyhealth.org.U.K.
They are an nhs lab so that should keep your gp happy ,I’m just trying to pluck up the courage to use my test kit for thyroid check lol it’s sitting on the table staring at me.
They are very reasonable and one of our lovely members recommended them to me.thanks again Marz
Best of luck 😉
in reply to Thrones12
Thankyou that looks good, if its NHS run the doctor may pay more attention to it, I have tried a finger prick test before and couldn't get enough blood but this does look like the best online test for taking to the GP
I woujd get his Gp to test his b12 folate vit D iron.The NHS have good labs.
2017 5 yrsrs ago so a good comparison of levels.
If he is eating well and vit B1e has plummeted ask for s IFAB test too as may be zn absorbtikn problem.
Hopefully when the sertraline has kicked in he will be able to sort this.
Hard to oversee grown up children.
Hope you get answers soon, I'm extremely ill right now being told I have chronic fatigue syndrome after 20 years of digestion issues which is passed off as 'IBS' . Was a vegan for a year when I was 24/25 and honestly can say it caused more damage and if I had known what I know now about b12 deficiency I wouldn't have tried it. It was all in the name of health at the time, its sad that we are all taking stabs in the dark, glad to have found this website. Pretty sure your son will be deficient, I had a recent test of 552 for B12 but it was serum not active which is the one we want if malabsorption is involved like me. Hopefully your sons is just dietary and can be fixed pretty quickly. Hes lucky to have a mum looking out for him, God bless
Sounds like you got a lot of really great advice here. Since your son is a vegetarian, it's important that he always take B12 and other supplements that he's not getting with his vegetarian diet. After you get him tested, if his levels are what doctors might consider okay, then you might as well start him on B12 supplements. He probably doesn't need to inject unless he's deficient right now to catch him up. But for the long-term, he would need to take B12 for life as a supplement. And since his B12 d is dietary, he would be able to absorb it with no problem.
There are some vegetarian members here who are very nutritionally savvy. Technoid being one of them.
You take B12 as well? Are you a vegetarian too? Or do you take it for other reasons? Because B12 deficiency can run in a family aside from being a vegetarian, due to autoimmune issues.
hi EllaNore thanks for your reply …. Yes wanting to get a baseline before treating …. If it is necessary ….. even if he trials supplements. I many years ago had a low b12 but was not treated …. I decided to trial injecting and have noticed improvements myself …. I have spent 2 episodes being vegetarian (10 years and 14 years) I’m hypothyroid was diagnosed with ME carpal tunnel have had prolapsed discs. I’m a nosy nurse so after becoming aware of b12d …. Here I am now hoping I can help my son xx
Yes absolutely baseline tests are so important before you ever start treating with B12. There are mail in tests in the United States I don't know about the UK. But they send you a kit you poke your finger and you send it back or something similar to that. I don't know if there are places in the UK that you can just walk in. But I know in the United States there are B12 health spas, and I called one and they said that you come in you get tested by their certified medical people whoever they are and they treat you according to your blood work. So maybe you could just walk into a health spa that sells B12 injections and see if you can get blood work. But remember whether or not his B12 is low when tested, he needs to take B12 everyday if he's a vegetarian. It's very very important. I did a search for B12 blood tests in the UK. I came up with quite a few things but because I don't know exactly where you are or my way around the UK I don't know which one would be best for you. But I did find this place
I'm vegan rather than vegetarian but this resource is a good vegetarian healthy eating guide that gives a good overview of what a healthy vegetarian diet can look like : vegsoc.org/info-hub/health-... .
Some other tips for him:
Pasta is fine but make sure its wholegrain, likewise for bread, cereal etc. Dairy products like cheese are very poor in terms of Iron content so if they are a big part of the diet they may crowd out better iron sources. Calcium on the other hand should probably not be a big concern.
Make sure all meals have a decent high protein component which generally means legumes like Beans, Lentil or Soya products. At least 2 meals in the day should have a serving of legumes.
Beans and lentils are also excellent iron sources (Great for potassium too) especially when combined with vitamin C sources like Bell Pepper, Tomato Sauce etc. Onion and Garlic also help iron absorption. An Orange or Kiwi as a starter works too. Lentils are quick to cook, beans can be used immediately from a can (preferably unsalted) or buy a pressure cooker to cook the dry ones in reasonable time.
The odd processed meat substitute is fine for convenience and variety but not a great everyday choice - keep to 4-6 times a month in my opinion . Add a handful or two of nuts for snacking and extra protein/fat.
Think about a Vitamin A source at every meal so maybe a small carrot juice in the morning, Canteloupe Melon, Apricots or Mango as fruit snacks and Carrots/Sweet Potato/Spinach/Butternut Squash in bigger meals. Easy way is to just look to see there something bright orange in your meal - this is the beta-carotene (pre vitamin A) then you are on track.
In general, try and keep good variety in the diet, pick up some new fruit or vegetable on every grocery trip and consciously think about whether you're eating the exact same thing every day, and whether you can change it up sometimes especially for lunch/dinner. Variety is the spice of the microbiome.
Test Vitamin D but if not already supplementing some level of deficiency is likely so base supplementation response on labs.
If B12 is adequate I would say about 25-50mcg B12 daily should be ok for maintenance but if a deficiency is present, or PA, then much larger doses or even injections may be needed. Although vegetarians usually have dietary B12 sources via dairy, eggs, there's still a risk to run low depending on how often good B12 sources are consumed so moderate supplementation makes sense to just be on the safe side.
Finally, once blood tests are done, getting a good supermarket multivitamin with no more than 100% RDA of the provided nutrients is a good addition to the overall picture.
£39 online chequp
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