Hi I was wondering if anyone knows of any UK site that provides provide private blood testing for the B vitamins - B1 in particular?
I have looked, but only seem to find ones that test for B12 and B9 only.
If not, what do you do if you suspect a B1 deficiency, but the GP is reluctant to run tests?
Many thanks
Hi Justine_Case,
Viapath do a B1 test
They've changed the website and unfortunately some of the blood test options they had are no longer available. Also there are now additional charges to get your blood done at St Thomas's hospital in London where previously it was included/no extra charge.
Not sure about postal packs for arranging your own venous collection (at your cost) I think they did do these but not sure now, you'd have to check their website. I believe they don't do finger prick tests.
Hope that helps?
Best wishes.
Hi Hedgeree thank you for your reply.
Providing they still do the test in Cardiff, I could possibly use that.
Judging how difficult it seems to be to get these vitamin blood tests, I wondered how other people establish they have a B1 deficiency (or other)?
Do you all have more helpful GPs?
Or do you take supplements as your symptoms suggest a deficiency?
many thanks
Hi Justine_Case,
I think many on the forum take a B complex so that would help boost your B1 levels.
My gp relations aren't great so I rarely have contact. Until I change surgery's I keep my distance unless really necessary.
If you have any recent blood test and vitamin results you can amend your post and add them and others can comment on them for you.
B1 is in many food items so if you eat a varied diet you could get B1 from your meals.
Take care.
I think sometimes they can’t actually measure accurately various vitamins and minerals as it’s not just in our blood and urine (predominantly areas they test) as it’s in our skin, skeletal muscles & bone etc. Instead they can often look for things they can test, and get an idea from that, as the item they’re testing relies on good sources of that vitamin or mineral.
Many B vitamins get depleted easily by over cooking, alcohol stress to name a few.
Hi Thank you for your replies
So I have untreated Hashimoto's (TSH not high enough).
I have been feeling awful for ages - tingling, fatigue, weakness, hair loss and weight loss to name a few.
My recent blood tests via the Doctors were fine, so 'no further action required'
Serum ferritin level 31 ug/L [11.0 - 307.0]
Serum vitamin B12 level 583 ng/L [180.0 - 915.0]
Serum folate level 18.8 ug/L [3.1 - 19.9
My ferritin levels were low (31) but not defiicient so I have been following advice on here by upping my liver/dark chocolate etc intake, but not taking iron supplements as my GP didn't think I needed to.
I did request other vitamin tests, including D but that was ignored.
My vitamin D has been on the low side previously when I used Thriva for testing, so I do take a D vitamin each day. The last test in August showed good so that must be helping.
Otherwise I'm not taking anything.
My GP now thinks I may have stomach gastritis. Having read up on this, I understand it can deplete vitamins and minerals if untreated (I have had these stomach symptoms for years).
Because my above tests came back ok from the Doctors, I have had no communication from them regarding this suspected gastritis.
I do however have a phone appointment with them at the end of October.
Do you think I should take any supplements in the meantime - I'm not due anymore blood tests.
Advice appreciated
Only speaking for myself on how I’d go about things.
I wouldn’t supplement with anything until I have baseline figures for everything.
Once you start supplementing your levels will fluctuate based on when and what you take as well as diet, it could mask various problems.
Yes the ferritin is on lower end of that range, but many GPs don’t supplement unless really low but doesn’t necessarily mean you are doing well on that low end of range that you’ve posted.
If you’re eating a diet rich in iron and blood tests aren’t any better maybe mention this although it’s not deficient but you’d expect a small increase.
I have rubbish ferritin & folate and my GP has had me to dietitian they know I have absorption issues as my diet is good, so periodically I’ve had to supplement from advice from my GP.
Our blood refreshes every 10-12wks or so… so repeat tests could give better/worse outcome another time all depends on many things. I’d be inclined to see if you can see dietitian regarding nutritional requirements if GP isn’t helpful, it’s not often an area they’re full on board with hence we have dietitian & nutritionists to see and they refer to, but usually only when something is deficient.
Your GP should be ruling out digestive things for you if you’re having digestive issues.
So I guess I’d wait until you have phone call, maybe ask is there anything they can test or rule out what’s causing the gastritis… it’s probably a process of elimination, but with their knowledge and they have your whole history of health in front of them, that’s what no one else has to give you accurate advice.
Regardless of well meaning and often excellent knowledge and advice given, you really need to get areas looked at by GP ( ridiculously hard I know) once you have, then you can make an informed decision yourself which way you want to go.
Don’t omit anything unless you already know of a problem with certain foods and this has been tested by your Gp.
As for example in coeliac disease you need to be eating a certain amount of gluten over a period of time to get tested correctly… it’s a simple blood test your GP should be able to do, and should be ruled out before other diagnosis especially IBS/IBD.
I’ve found trying to work with my GP rather than fight has had better outcome, one finally admitted after me doing much research in areas she needed to refer, it’s like you’ve got to find that missing piece which gives them green light to try other things. I have had various deficiencies conditions I’ve improved to prove their on the wrong track… it’s exhausting but even so still due to regulations/politics/costs we struggle to get basic care. I don’t think it’s at all personal it’s ridiculous guidelines and some GPs are going to fight for you if you’ve tried all other areas, just my experience so far… not holding my breath for T3 prescription though as in my area it states do not prescribe🤨
I do understand where you are coming from re not cutting things out unless tested and confirmed, but Coeliac testing is so hit and miss and NGCS testing non-existent. I found purely by chance that I had a significant (for me) gluten issue, which had never been tested for. But after doing a lot of research and improving my conditions, I am, I hope, starting to get somewhere. But I also now have a GP who will listen and a team of consultants who don't treat me like an idiot.....Cheers
Hi bookish
Since getting advice on this forum, I am pretty sure I do have Non Celiac Gluten Sensitivity, due to my having had (for years) a painful blistering rash on my scalp, and other symptoms.
GP and neurologist said it was shingles, even though I kept arguing I had this for years!
Then I got this autoimmune thyroid problem. More recently I gave up gluten, and the rash disappeared.
During this fun journey, my GP insisted on testing me for Celiac. I said don't bother as I clearly have a problem with gluten and dont intend to eat it again. However he insisted I eat it for six weeks prior to testing.
I did and the rash etc came back. I told my GP this and he said that gluten only causes stomach issues, and the rash would be unrelated.
Then I posted something on here, and somebody mentioned Dermatitis Herpetformis.
I Googled it and I absolutely have the symptoms of that when consuming gluten.
The Celiac came back negative, so no doubt my Doctor will say to resume eating gluten - I wont.
This whole health thing has been so frustrating!
So you can get a skin biopsy to test for Dermatitis Herpetiformis (DH) ask to see a Dermatologist to rule it out.
Your GP is wrong to inform you gluten just causes digestive issues it also cause skin and nerve problems… along with all other nutritional problems it causes along the way.
Print out from coeliac U.K. and show them, drop it into surgery reception for your GP, if you cannot get face to face appointment.
I know a few who struggled to get diagnosed with coeliac disease or at least be even told they probably have Non Coeliac Gluten Sensitivity (NCGS) . I’ve been a member of coeliac U.K. for decade now and read/seen many stories and have couple of friends in similar situations and one has had 3 scopes for on going issues, still non the wiser it must be awful.
Then there’s people like me, the opposite side of the coin…. Fully no doubt whatsoever coeliac, but with no symptoms whatsoever, found completely by trying to eliminate things, and just as I found I had hypothyroidism (but suspected that after birth of my daughter) all from a disc bulge hitting spinal cord causing paraplegic shock. I couldn’t walk for 48hrs along with bowel issues eg not going to the toilet, but after 2wks was back walking and was getting better, bulge was found by mri … most likely caused by nutritional deficiencies, I had no idea of, a few were dangerously low and was told they couldn’t believe I actually looked as well with such results. I had dozens of tests which highlighted things …. My coeliac levels were too high to count that took 9 months to be able to count, 2 years to get negative and I’m extremely strict …. my hypothyroidism levels was very high too, and year or so after taking Levothyroxine started with muscular problems in lower back, hips & pelvis.
So this is why I believe we should look at things individually, rather than be clumped into groups like for like… I’m not the typical coeliac … we are individual, we don’t have same genetic disposition, we don’t have same diet, stress levels or tolerance, exercise or same level of hormones.
This is the reason why we get some like me, no one would of ever said I had coeliac disease non of my parents, grandparents or sister shown any signs digestive wise… However I have suspicions on my mum having it but at over 80 isn’t interested in finding out or eliminating if did have it and enjoys what she enjoys in her old age… my suspicion is purely based on her having psoriasis another autoimmune condition.
Then there’s some only wind blows wrong and they have digestive issues but don’t have coeliac disease or can find what is wrong.
I think testing for coeliac with those with ongoing issues that have negative tests, should and I know some do and have had a scope and samples taken, if obviously if nothing to record it’s not coeliac… so after ruling that out and have ruled out other medical conditions, as with coeliac disease only thing to do is omit the cause, gluten. At present there’s nothing much around to do other than that, although there’s a few things being investigated to help live with world of gluten hidden in everything 🤦🏻♀️
I’m not sure I follow regarding the test for coeliac disease, and it is hit or miss… as I understand if you’re below certain level of antibodies your not coeliac if your over you are. *Edit* along with scope and biopsy to confirm.
What usually does happen is people suspect bread for example bloats or causes other digestive symptoms and they stop eating it feel better and yo-yo with that for sometime before getting tested. Just some need higher levels of gluten to record as coeliac in tests, so it’s why they ask you to eat gluten for specific time and enough of it.
I actually have no idea regarding NCGS, it’s not something I’ve experienced… I’m definitely not dismissing I know it exists, all I can see if something has been looked and ruled out along with other medical things, but someone is better for omitting gluten then just do as a coeliac does. I do think same tests should be done eg nutritional screens annually and Dexa scans etc and dietitian appointment is given make sure you’re covering areas your not getting from diet from omitting gluten like B vitamins, fibre and calcium to name a few…. Gluten flour doesn’t have to be fortified as does regular flour, so these areas can become problematic if not replaced in diet.
I haven’t gone through that struggle thankfully, but know of those who are still, years later.
😔
To be honest I had never heard of NCGS until recently. I think most people think you either have celiac disease - or don't.
I can't 100 percent say I have that, however I am sure I get that DH rash that it is associated with.
Also, I have a problem with iodine (it causes hyper symptoms) and that seems to make the rash worse quote from Celiac.org:
'Case reports in scientific literature over the past half century have demonstrated an association between iodine exposures and flare ups of dermatitis herpetiformis (DH), a form of celiac disease that results in itchy, blistering skin rashes'
As you say, we are all individuals and what may work for one wont necessarily work for another.
It seems there is a lot to be learned about autoimmune conditions.
I am learning fast!
If giving your GP any information you want to make sure it’s from U.K. if you’re in U.K.
Other countries have different regulations and standards and if quoting any research make sure it’s evidence based not what has been done on Rats or whatever and not biased… they will spot it straight away.
I agree that we are all different and these conditions don't always manifest the same way. As far as coeliac testing is concerned, if they don't look at the right bits for the samples they can miss it completely, and as for antibodies, generally stages 1-3 are ignored, with only 4 triggering a diagnosis, but for that you will have total villous atrophy. Only about 15% of coeliacs have a diagnosis and the UK is better than many other countries - pitiful. Dr Marsh believes it morally indefensible to ignore the earlier stages when you have time to do something about it - generally about 7 years of antibodies prior to mucosal changes. Just looking for gut involvement and late stage disease helps no-one. Dr Marsh commented that numbers would be far higher except that people stop eating gluten as they know it is damaging for them, and he agrees that forcing testing shouldn't be done. CD is only one part of the spectrum of gluten related disorders.
Interesting that you mention digstive issues when the wind blows wrong. If you mean that literally, likley to be histamine or mast cell dysregulation.
Cheers
I was meaning that some people are very easily upset digestive wise either feel sick or have more reactions generally, some exacerbated by stress and anxiety. Many reasons can be attributed to digestive upsets some of the basics is low stomach acid that quite often goes hand in hand with hypothyroidism, some medications causes same problem .
Histamine is a very hard area to decipher what is triggering what, hormones can very easily disrupt its often seen in puberty and menopause, stress too along with clues it’s been there from an early age, and some of the healthiest foods along with aged foods cured meats and left overs are big triggers. It’s a process of elimination finding your trigger/s along with over the counter antihistamines and obviously prescribed often added in and can be increased under doctors supervision. There’s quercitin and enzymes etc that can block receptors but can be very costly to use all the time and only usually used in circumstances when you can’t avoid what you’ll be eating.
I can’t speak for how others have found their experiences with testing but my antibodies were high and scope clearly showed a problem and I had 10 samples taken and was confidently diagnosed.
I just don’t get if the problem is gluten then take it out… being mindful that what you take out your diet needs to be replaced.
I guess if like you mention some stages are being overlooked that’s not on, are you talking about biopsy *edit* Marsh classification I think maybe you mean, I’ve jogged my memory it’s been a decade since had the ghastly scope hated every minute, so put that right out my mind.
I don’t need information if my edit is correct.
Which antibodies are you referring to if so, as I’m aware there’s several Drs use.
Additional If you’re one of those who have IgA deficiencies there’s others that should be checked…. This is according to coeliac U.K.
Thank you CoeliacMum1 that sounds good advice.
I will wait until the Doctors have decided how to proceed with this gastritis complication.
The last thing I want to do is complicate things further by over supplementing B vitamins or others.
You are right about the 'working with the GP' honestly that is a struggle given the fast decline in GP services, but I am trying hard to be understanding and approachable with my practice, so as not to be dismissed as a troublemaker!
Thanks again
Hi Justine_,
Is there anyway that you can get your GP appointment brought forward?
It does seem a long time to wait with the digestive issues you are having. As you say working with your gp is a good starting point, it's something I've been trying to do for years but unfortunately my polite requests have always been dismissed.
Take care.
Hi Hedgeree
With my GP practice you have to call at 8am then wait in a queue, then when you get through are assigned a phone call appointment that day, or if not deemed an emergency, told to book online.
This is what I did, but the online appointments are a month or more away.
I may try to call again and insist on a call back that day providing I can get past the receptionist!
OT :Update 5th week on B1+B6+B12 injections
Help with test results
Thriva test results, only half received
Adrenal Testing and Genetic Testing
