Right after fighting with my doctors regarding my worsening symptoms (I'm diagnosed with coeliac disease and thyroid disease-hashimoto's- both managed without issue) I then paid for private blood testing found out was deficient in vitamin D and B12 when got tested with GP and my level was 180-B12 ('in range at my surgery) I then insisted on IFab and anti gastric tests both were negative so she left that there. I then found out today I have Epstein barr virus but need retesting in 6-8 weeks to see if new infection or old?. Anyway I was interested in any further information. My symptoms are extreme fatigue (sleep 8-10 hours, wake up exhausted, then nap 1-2 hours after work) pins and needles in legs, stabbing feeling in middle of foot, 'dead' sensation in arms, dizzy spells (lightheaded feeling),lower back pain on waking. Ive been tested for R.A and hepatitis both clear. I'm only 29, I'm exhausted at fighting for a diagnosis, any ideas? thanks for listening and sorry for rant guys
Epstein barr virus? -B12? whats going... - Pernicious Anaemi...
Epstein barr virus? -B12? whats going on?
I had EBV when teenager and felt awful- really weak and sweaty when I tried to do anything for a few weeks after a horrendous sore throat but it failed in comparison to B12 deficiency and my level was the same as yours. I never had any neuro symptoms with EBV but plenty with low B12. Have you asked GP for a treatment trial based on BCSH guidelines that if symptomatic and level less than 200, then treat, even if antibodies negative as 50% will be in true cases anyway? Or have you requested referral to haematology or asked for MMA/homocysteine? These will help confirm B12 deficiency, if high. No point if you have started to supplement yourself though. Nothing can be done for EBV- just time to recover but B12 deficiency will respond if treated properly. If it was me, I'd be asking for a trial/referral. Good luck!
"I then insisted on IFab and anti gastric tests both were negative"
Are you in UK?
It is possible to have a negative result on the IFAb(Intrinsic Factor Antibody) test but still have PA (Pernicious Anaemia).
The "BCSH Cobalamin and Folate Guidelines" mention Antibody Negative Pernicious Anaemia on page 29, a diagnosis flowchart.
Some UK GPs may not be aware of the BCSH Cobalamin Guidelines, they may be using local NHS B12 deficiency guidelines that may not have been updated for several years.
There are many causes of B12 deficiency besides PA. See next link.
b12deficiency.info/what-are...
As well as B12, have you had ferritin, folate and full blood count tests? Have you ever been tested for H Pylori?
b12deficiency.info/b12-test...
b12deficiency.info/what-to-...
labtestsonline.org.uk/under...
patient.info/doctor/helicob...
patient.info/doctor/macrocy...
patient.info/doctor/pernici...
UK B12 documents
Recent UK documents make it clear that people who are symptomatic for B12 deficiency should be treated even if b12 levels are normal range.
1) See BCSH Cobalamin and Folate Guidelines...page 8 and page 29
b-s-h.org.uk/guidelines/gui...
2) BMJ B12 article
bmj.com/content/349/bmj.g5226 See 5th summary point
Symptoms lists
pernicious-anaemia-society.... Click on Symptoms Checklist
b12deficiency.info/signs-an...
B12 books
What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper
"Could It Be b12" by Sally Pacholok and JJ. Stuart
Other links
I am not a medic just a person who has struggled to get a diagnosis.
sleepingbunny and secondchance, I sent her all documentation from PA website/the bsch guidelines and the nequeks alert-which lead to doing other tests-which for her was enough to say defo not B12. I'm convinced it is especially given I suffer swollen tongue too. I haven't started taking b12 yet but I'm so exhausted and fed up that I feel I will have no choice but to start soon, ive been fighting with her for months. Its dreadful, ps I also read the could it be b12 as well. Yes I'm in uk
Get another GP? Or get a referral to a specialist? And/or try and get MMA/homocysteine tested.
You are in at least two high risk autoimmune groups Kate, with neurological symptoms of B12 deficiency and, personally, I wouldn't waste more precious energy battling the system but would start self injecting and supplementing as soon as possible to prevent further damage (more info and help on the site about this).
EBV has also been linked to ME/CFS, which my relative had with EBV and she was misdiagnosed for many years and eventually dementia - it turned out to be severe B12 deficiency.
You may be interested in reading 'Medical Medium' by Anthony William - EBV, B12 def. etc. is mentioned many times in relation to undiagnosed, long term debilitating fatigue, etc.
Re. gastric tests - a link you may not have seen:
Where would I start in terms of buying to self inject. I have no clue but defo want to start
These are the links I copied from this site to order for my relative some time ago. Others here probably can advise you on this and self injecting :
B12 from amazon.de - amazon.de/dp/B009M3TRQ4... - the site is very similar to amazon.uk, so if you're familiar with that navigation is fairly easy. Otherwise you can amazon.de open in one window and google translate in the other.
syringes, needles and wipes from amazon.uk:
Green needles to draw the solution up into the syringe -amazon.co.uk/gp/product...
Blue needles for the actual injection - amazon.co.uk/gp/product...
2ml syringes - amazon.co.uk/gp/product...
Sterile wipes - amazon.co.uk/gp/product...
I hope they work and all goes well for you.
Thanks much appreciated
I do understand your frustration and that you just want to feel better but please try and get a diagnosis before taking B12. Find another GP or go to a specialist. Try and get at least MMA/homocysteine tested before you take anything. I do not recommend starting self injecting without medical supervision, or having had at least injections already.
I think you need to find out if your body has trouble absorbing B12, I have the opposite, High B12. And it has to do with my liver. Which a sstudy already shows its enlargement. In another study 2 years ago showed spleen enlargement. When dealing with vitamin deficiencies, go deeper into if there's an organ affected, so you can fix it. I am going to a naturopath to fix, and with God's help.
Welcome to the forum, Yaba and thank you for your reply.
Had you been already been supplementing B12 before testing high for B12 ?
Yes, I agree you have to go to the root of the problem and it was only laterI realised how slowly B12 deficiency creeps up over years. Fortunately, mine was fairly straightforward after years of stomach problems, reading books/research papers on PA/B12, as well as discovering from gene tests that deficiency had affected three other family members.
It’s four years since I began injecting B12 every other day after a very bad virus left me with neurological symptoms: severe fatigue, tingling toes, worsening memory, proprioception, etc. Very thankful to feel SO much better now with symptoms only returning after stress or overdoing.
I hope all goes well finding answers Yaba 🤞🤞
Thanks for the welcoming and also for the reply. According to supplementation, I was taking multivitamins. Didn't got B12 shot nor B12 separately. But since no doctor could tell me what I had, I had to do my own research, even though the same illness hardly gives me any mental concentration to read anything. I don't know how I do it. Since I already know that my liver has been affected (enlarged), what I investigated was that for a person to have extra B12 floating in the body, is because B12 get processed in the liver, and the liver might not be working properly. So you know that the liver is not working properly, and the effect is the High B12 you see on the system.
The best thing anybody can do is look for the signs your own body sends. That's how I've done it. Taking advantage of the senses from my body. Senses God provided to us, that make us feel what we have. Just by sensing. Have a good day.
I think you need to go deeper in what virus you had. And what are the consequences of that virus. What things you'll have to learn to live with after that virus
A coincidence that you should tell me this as I’ve been reading about Dr Judy Mikovits, Phd, a highly experienced scientist and champion of those with ME, (three in my family originally diagnosed with this before two had gene tests done which flagged up difficulty in absorbing B12, D etc.) She has been doing vital research into many retroviruses.
I’m afraid I’m long past the age of worrying too much about my own future but would like to be able to help my granddaughter and the rest of my family avoid the stress of dealing with doctors with very little knowledge of the subject.
Dr J Chandy’s book, ‘Vitamin B12 in Clinical Practice’ is available free on line, chapter by chapter. Indian doctors are generally more experienced in recognising B12 deficiency symptoms in vegetarians in India. My own surgery finally began to take my symptoms seriously after sending them his book 🤗
b12d.org/b12d/submit/docume...
Thanks Polaris for the B12 attachment. I will also search of that Dr you mentioned. Thanks. Did you know that a lot of conditions like MS come after being inffected by EBV? EBV is a precursor to MS and a lot other autoimmune conditions. That's a good dedication you are doing for the well-being of your family.
My treatment with the naturopath now is to stop EBV from replicating. Plus to try to fix the rest of the disasters it has done in my system. Just this year I noticed, due to symptoms I've been for years, that I've been with EBV without a diagnosis, 27 years. But thank God is never too late. No matter the age. Never late. God bless you🙏
That’s a long time to be without a diagnosis Yaba and I hope you feel much better soon with good treatment.
It’s many years since I read ‘Medical Medium’. (this is a five year old thread !). I will find the book to reread. I do remember that I was confused that it rather contradicted the B12 research I’d been reading 🤔
So many conditions seem to overlap - PA/B12def. is so often misdiagnosed as ME, MS and even MND, which in the US is treated with very high doses of B12!
My vegetarian sister and I tested positive for EBV years ago and another vegetarian friend was diagnosed with MND, even though his B12 tested below range and MMA extremely high!
Lots of links to information available on this forum. I found Tracey Witty’s B12deficiency website another very good source of excellent links to good research and symptoms.
Here’s to much better health very soon xx
PS I finally found relief from terrible anxiety symptoms (suspected Addison’s last year, which was never tested at the time) after consulting very experienced local herbalist 🤗 I agree with you about sensing what your body needs. I’ve successfully used herbs, homeopathy, vitamin C and D etc. most of my adult life.
Ok. Yes, when one has been struggling for an answer, research is one of the things that could help end this nightmare. Even though I'm with a naturopath, this illness is making resistance. Hopefully I need to have patience and faith because even though now I know the diagnosis, it seems is going to take a bit more to feel better, to feel healthy. God bless 🙏🙂
You say your B12 was 180 - do you know the units (ng/L, pg/mL ot nmol/L) and the 'normal' range for the test - it'll be in brackets after the number - something like (150-5999). If they didn't give you a copy of the actual lab results ask for them - they are your results after all.
The B12 test is not very accurate, so a reading of 180 may lie anywhere between, say 150 and 210. That should be good enough to argue for another B12 test at least. Then, once that's agreed, you can say 'while they're making the hole in me they may as well take some out for an MMA test as well'.
Pg/ml and range is starts at 150 not sure how high it goes up too
The top of range numbers don't really mean much. I've seen some quote numbers as low as 700. My last test (and the one before) came back as 5999 - because that's all the test can measure.
So your value could easily be at the bottom of the 'normal' range. And the 'normal' range is normal for the average person.
I would go back, explain that you're not satisfied and want the B12 tested again. Then, as I said above, tell them they may as well do MMA at the same time.
If they still refuse then ask for a referral to a neurologist. The doc may suggest a haematologist - my experience of them is that they're fixated on blood. If you don't have macrocytic anaemia then you don't have a B12 problem. A neurologist will be able to do tests on your feet for peripheral neuropathy.
Talking of macrocytic anaemia - have you been tested for that (it's part of a FBC - Full Blood Count)?
Yeah full blood count was 'fine' again
Have you been in the coeliacs forum? My neurologist said that my symptoms (very similar to yours) may be due to coeliacs.
I told him I'd been tested before and that I have no reaction to wheat (thankfully, I love wholewheat bread) but he still wanted me tested again.
My gluten free diet is really strict and my results are always negative I've been diagnosed two years
I'm afraid I know little about coeliacs. Somebody in here may be able to say if your symptoms could be explained by it.
If you want to read an eye opening book about Epstein Barr and how it is the root cause of many conditions we are tagged as, at the doctors , please read Medical Medium, secrets of chronic and mystery illness and how to finally heal, by Anthony Williams . This is a great read and if you have an open mind this is a miracle book. I have been healing my Shingles with the foods to eat and not eat, and it's like a miracle.
Adriane
Hi,
I also wondered if you had had tests for Immunoglobulin deficiencies.
IgA deficiency can mean that a person produces negative results on Coeliac antibody tests.
coeliac.org.uk/coeliac-dise...
labtestsonline.org.uk/under...
It is possible to get private tests for immunoglobulin deficiencies but not many places test for the whole range.
"full blood count was 'fine' again"
Did you get a copy? I learnt that what I was told was fine or normal was not always fine or normal when I got the copy of results.
Have you ever got a complete set of your medical records? There was someone on this forum who found out they had been diagnosed with PA in the past but never told....
I think its relatively easy to get medical records from GP, can be quite expensive though and needs a formal written request, much harder to get records from hospitals, needs form filling and maybe vist to hospital records office.
The PA admin said "I do understand your frustration and that you just want to feel better but please try and get a diagnosis before taking B12"
My personal experiences are that supplementing with B12 can make it virtually impossible to get a diagnosis, this happened to me.
I felt forced to eventually self treat after several years of trying to get NHS B12 treatment as I was highly symptomatic and deteriorating. For me it was an absolutely last resort and I would have preferred to get treatment from NHS.
b12deficiency.info/b12-test...
b12deficiency.info/what-to-...
b12deficiency.info/b12-writ...
I also wondered if you had looked at MTHFR gene mutations?
labtestsonline.org.uk/under...
Have you ever been bitten by a tick in the past? Has lyme disease been ruled out?
Hi autoinmunekate. Epstein barr really sucks. I read in your post all about the pins and needles and feet stabbing, and I saw a picture of myself. Been dealing with all of that without knowing what I had, for more than 20 years till finally some doctor dare to test me for EBV. My head feels like I'm drunk all the time.
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