Hello everyone
I have posted previously and have this morning received my blood results showing from September when I last had a blood test an increase of my B12 from 282 to 358 good I thought but (could this be because Ive been taking 3 days of Ultra Vitamin B (50 ug) includes 200 ug folid acid??) in addition to eating eggs etc (I am usually vegan) Doctor says if I had PA no tablets would increase the levels - is this true? I tried to get re-tested today after stopping the tablets 3 days ago as I felt awful (thought I was reacting to the tablets) but my doctor wont retest me due to the cost to the NHS! However my FOLATE levels in September were 12.0 (in a range of 3.1 - 20.5) they are today 36.1 ug/L using the same range. Again could this rise be just down to 3 days of supplements? I am panicking now as Ive read on line high folate levels can mask true B12 levels in a blood test. I am trying to get privately the tests re-done to include methylmalonic and homocysteine to give abit more info about what is going on. Not sure whether Ive had an abverse reaction to the 3 days of supplements but numb foot which started 4 months ago - (I was taking the high dose pills then and have done sporadically since) has worsened but worst than that the last 3 days Ive not slept, had horrendous anxiety and aggitation, pacing, trembling and flicking of muscles all over body - particularly in the back of legs, confusion, writing and speaking wrong words, high blood pressure, nausea, sensitive tongue. None of this is like me and Ive NEVER had it before. Waiting for doctor to call me back about FOLATE readings but when she handed me the read-out this morning she didnt even comment even though there is a star next to the reading to investigate! Given the length of time private blood tests will take I am inclined to try 1000 mg of Methylcobalamin because Im terrified to try a B12 shot given my reaction to lots of drugs, preservatives and dyes which have landed me in A&E with terrible rashes, sensory reactions. Many thanks Tracey
Hi again Tracey, I am no expert in all of this, but it does sound as though you've managed to raise your B12 levels by taking tablets. I don't think it would be harmful to try the 1000mg of B12, as we excrete any that we don't need. Some of the people who post on the other site I'd mentioned yesterday, have said they only feel well when they get their levels up to 1,500 plus. The highest level I've managed was 1,200. Of course, it's hard to know how much of that was "active" B12! Pursue getting the private blood tests done, but give the other tablets a try. Unfortunately, there are so many variables with the test results and treatments, only we know how well or not we are feeling. Maybe try posting your results on Health Unlocked, and see if anyone on there can be more helpful? Very best wishes Marion x
Hi Tracey.
Only 1% of oral b12 will be absorbed with Pernicious Anaemia. What type of b12 is in your tablets? You may have a metabolising problem where b12 and folate is inactive in your blood but unable to metabolise into your cells. You may do better on methyl folate and methyl cobalamin. Look up MTHFR genetic defect. This could be your problem xx
hi tracey;
so sorry to hear things r in such a state of flux for u. i so hope u get a resolution to things shortly.
1)high Folate levels can present in cases of PA, as there's sometimes impaired utilization of Folate with PA.
2)it's impossible to conclusively say if ur b12 levels have upped in response to the Mega b12 & dietary changes. the body has such a dynamic ability to compensate, adpat and re-adjust from day to day in the name of survival that it's impossible to track or/and explain these nuances of change accurately. for example, in Sept. u might have had an asymptomatic viral/bacterial infection incubationg, been midway through or post a heavy period or were stressed out. so the level may consequently reflect in been lower. it's not a big rise in levels.
3)re Docs comment re if u had PA, u wouldn't respond to oral b12 intervention: as far as i understand the condition i think that's correct.
4) with the state of flux & other presentations i.e. allergies/sensetivities etc. there's the possibility of an auto-immune component going on at the moment, that can be addressed.
5) tracey, have u had the following tests completed by the GP: 1) a 'stomach parietal cell anitibody', 2)'intrensic factor (IF) test.
7) the Spire Private Hospital Group do the MMA (Methylmalonic Acid )@ a cost of £39.22 plus £22.89 for drawing the blood. the turn around is 10 days. they also do the Homocyctine blood test - turn around for that one is 5 days. the Nuffield Group say their 'turn around' is 7 days.
check their costs think they are higher. also, as they send them awat be sure to have them done am if it's a friday. woth checking that out too.
c
hi tracey. think if u can address the current stress, it would help u get some much needed rest & sleep. two modalities that does quick destressing & rebalancing of the body are :
1)Touch For Health (TFH). it's totally safe, non invasive and does give instant results. google it and see where ur nearest Practitioner is located.
2) Kinesiology: this is a more sophisticated modality. as well as ''balancing'', through muscle bio-feedback it can help identify sensitivities/allergies/deficiecies etc. etc. aim at getting an experienced Practitioner. it'll get u through this period whilst the investigations are being completed.
wish i could be more helpful as i undestand how stressing all this can be
we a are ALL rooting for u on here
positive & healing thoughts are going ur way.
Caitlin.
Hi Marion many thanks for your message. Yes I was very happy when my doctor rang to confirm the B12 levels had increased - guessing through diet and the Ultra Vit B Complex but she made no comment about the high folic reading even though it had a black star next to it and note to investigate. I am just hoping that the folate is high as the tablets I took are optimum strength. I do think they were a shock to my system and as I am feeling quite well today apart from abit of buzzing in my feet, that the awful effect of the pills are out of my system. I was just so ill yesterday. I think the level of B6 357% RDA was possibly toxic to my system. I seem so sensitive to alcohol, caffeine and drugs so guess Im not surprised. My Neurologist says I am wasting my time getting the blood tests done but if I agree to pay (rather than claim on my insurance) he will agree to arrange through Spire Hospital! I will give it a couple of days before I start taking the methycobalamin - it was cyanocobalamin in the ones I took - maybe I reacted to the cobalt in the B12 or some other ingredient. Just hoping for a good nights sleep tonight and less twitching! Thank you so much for your time and support - its been invaluable; really. Tracey x
Hello Heather thank you so much for your message. Its very interesting that only 1% of oral B12 is absorbed with PA. As such I am hopinh I am deficient due to my restrictive diet - mind you bearing in mind Ive been vegan for 20 years it could be alot worse! The B12 in the Vitabiotics Ultra Vitamin B Complex (premium quality!!) is cyanocobalamin. Ive bought some of the more expensive B12 Methylcobalamin 1000mg and will give them a go in a few days when my poor body has recovered from me taking the Vit B Complex - no idea whats in them that didnt agree - first I got a dozen or so little red spots on my face and then the horrible neuro symptoms. Ive drunk alot of water and hoping to flush them out of my system. I am going off to look up MTHFT genetic defect and get some methyl folate and stick to just these and ditch the B Complex - they just dont seem to agree with me. Thanks again - you're advice and support is so much appreciated. Tracey x
Dear Caitlin
thank you for much for your wonderful informative message. I really do appreciate your time and knowledge on this subject which is new to me.
My GP has just agreed to repeat my folate test next week which is something. At least I will then know its if the over zealous supplements or something else going on. Yes its very interesting to hear that the body adjusts B12 levels from day to day according to what is going on is our system and lives. I am just hoping my numb foot is not down to nerve damage sustained from my B12 levels - I have never been able to get to the bottom of it despite extensive
tests so as soon as I read about B12 and what symptoms can present themselves in the case of deficiency I thought Id finally found an answer. I then became incredibly stressed out when the supplements made me ill and my doctor wouldnt agree to an injection as a result of such. Books like The B12 Deficiency Survival Handbook mentions such symptoms and those horrible neuro ones experienced over the past few days as a final warning - no wonder Ive gone into meltdown! I really wouldnt be surprised if there was an autoimmune issue going on - that would explain alot. I saw an allergy expert today - unfortuately it turned into an hour long counselling session at considerable cost - turns out he is a counsellor too think he needs more patients! He says we can address allergies at our next hour long appointment!! I havent had the tests you mention in your point 5) but I will add them to the list of ones I am going to have done privately - cant see my GP agreeing to them. I am paying for homocistene and MMA - infact I am going to Spire Brighton for these but thanks alot for the information on pricing and turn around times. Thanks again Caitlin - you've been just great. Tracey x
Hi Tracey, it's my understanding that methyl cobalamin is easier to assimilate than cyanocobalamin. I really hope this will prove to be so in your case. I wish you a really good night's sleep, because, after all, that is the chief way our bodies heal and repair themselves. In my own case, lack of restful sleep, always makes me feel so much worse. So try to wind down gently before bedtime, a warm bath or shower, followed by soothing music or a good book. Good luck with the blood tests. Marion x
Apart from anxiety you are also suffering from poor advice.
PA and B12 deficiency are not the same. One may be deficient in B12 purely from diet (and fish eggs and dairy are not in fact sources.)
Some people cannot take cyanocobalamin and some cannot use or poorly use folic acid. It will then show in the blood however.
Your neurologist is wrong that very low levels ie below 50 of b12 are required to produce neurological symptoms. He is also wrong that oral treatment is not as affective as injections. From .5 - 4% of oral is absorbed versus 20% of the usual injection and possibly more sublingually possibly because absorption is spred over a longer time. That is say 1000 mcg gives 10+ daily versus the injection of a maintenance dose of a 1000 mcg monthly gives 200 and 3 monthly even less. Since normally only 2-5 mcg are required pd either is enough for normal use. Building a store may require more and some people use more. You can look at the studies for this yourself instead of relying on "expert" opinion. Specifically search oral B12 effectiveness. After 3 months the results are the same or better on 2000mcg but even 600mcg works.
If your diet is good usually with whole meal and vegetables you do not require buckets of B vitamins. Though you may require some extra while healing. These things are not always exactly true to label either depending somewhat on manufacturer.
Three final points neurological effects take time to heal and there can be odd things as they do - think months. Secondly part of the process can be a detoxification of toxins and heavy metals that can initially make people feel worse.n rather than go overboard on that ballgame KISS.
Thirdly you are obviously suffering from anxiety whether as a symptom or experience. I wouldn't go overboard on tests. for a start you need to know what to order and how to interpret them. I suggest you try to keep things as simple as possible. It will take sometime to heal and you may face additional complications. However for starters it may pay to start with the hypothesis that your diet was lacking. You may have some genetic obscure defect that effects one in a million and then how will you fix that? Or you may have run into a consequence that all vegetarians face eventually.
hi tracey. delighted/relieved to hear the vits r out of ur system & things r back to normal.
a couple of comments that MAY throw some light on the High Folate levels. the Lab/Medics measure 2 levels of Folate:
1)Plasma or Serum Folate levels, which measures 'short term' Folate intake. Def. levels r <3.0 ng/ml.
2)Red cell Folate (RBC) levels, that measure 'long term' Folate levels. Def. levels < 140 ng/ml.
from ur post it sounds u possibly had 'Serum Folate' (short term levels) measured. the reading would reflect ur recent high dose supplementation & enhanced b12/Folate rich food intake. perhaps when u have ur levels re tested they'll be lower or normal.
3)high levels of Folate r usually OK provided that b12 levels are also normal. cells need b12 to utilize Folate. when the b12 is deficient Folate cannot be used up so builds up in the blood system. Folate tests can give high readings in this instances.
C
re: a few comments re b 12 deficiency blood diagnostic tests.
1) b12 serum levels is usually the first test done by GP's. however, b12 assays can be vulnerable to false positives - low levels in the absense of deficiency & false negatives -normal levels in presence of deficiency. this measures all the b12 in the serum. it's not specific. it doesn't seperate out the active from the inactive b12. 'active' b12 is necessary to combat b12 def.
2)the Methylmalonic Acid (MMA) test is more reliable in establishing accurate b12 deficiency levels. it identifies the 'active' levels of b12. it's more sensitive and more specifc when used with the Homocysteine test. these r not available on the NHS at the moment. it's available @ the Spire group Hospitals & the Nuffield group. cost varies. some GP/Medics feel these 2 tests r 'contraversal' & maybe relectant to refer u on for the private test. however, the BMJ has recently published a good article on MMA's superior ability (above the standard test) in measuring b12 status.
2) Antibody Screening: Intrinsic Factor (IF) test or Intrinsic Factor Antibody' test (IFA). this test is done in the process of establishing WHY b12 deficiency presents. if positive, PA can be suspected. it replaced the old 'Shilling Test'.
3)if the IFA test indicates low antibody sensitivity 'Parietal Cells Antibody' (gastric cells) (PCA) test is done. again this test is done to complement the IF test & to exclude PA when investigating b12 deficiency.
these 2 test are recommended by NICE (National Institute for Clinical Excellence UK), so should be available from the GP. i'm having mine's done end of Jan @ GP. (thes r just the tests & shouldn't replace good history taking.
btw, NICE don't have a clearly defined water tight 'protocol' on B12 diagnosis/treatment. however it might be worth reading their Clinical Knowledge Summary (CKS). it could be helpful if one's GP needs persusading to have the IFA & PCA tests done. there r many 'IF/BUTS' there, but helpful in it's own way - in a general manner.
it comments that 80% of cases of megaloblastic anemia r due to impaired absorbtion of b12. it gives a comprehensive list of the causes of the remaining 20%
hope that's useful.
C
Thank you so much Marion. That is really helpful. Thank you also for your advice on relaxation - very sound. I actually paid privately for repeat blood tests yesterday to include Methylmalonic Acid Test such acid apparently accumulates in the blood in the absence or low levels of B12. This test is considered better than testing for serum B12. Anyone suffered neurological impairment will apparently show more of the acid meaning this test can say whether someone is on the way to neuro damage or already has it normal levels being 0.04-0.27 umol/L. The results should be back next week. Although my neurologist is still convinced I am making a fuss about nothing, given my diet, laxness over taking vitamins over the last 6 months (vegi vitamins discontinued by Seven Seas) and falling levels of B12 in the past two years (only recently came to light) coupled with numb foot and neuro symptoms I feel I am having to take matters into my own hands. After ceasing the 3 days of Vit B Complex I am now just left with slight tremors in legs and insomnia (hence this early morning message - also had a tooth out yesterday which has kept me awake!). Am guessing the reason I was so ill on the Vit B Complex was maybe the high dose of B6 was becoming toxic to me as I wasnt absorbing the vitamins as I should have (for whatever reason). Will try just B12 from now on. I am going to me GP today and ask to be referred to a haematologist - am guessing that would be the right professional who could advise on the issue generally and dianosing any other condition that might exist (??) - have lost faith in my GP and my neurologist is losing patience with me! Will be very interesting to see what my blood results are next week and to see if the very high folate readings have come down after stopping all vitamins (on the advice of my GP!). If I do have PA I shall need to address the issue asap given my numb foot, continued neuro symptoms whether this is by taking 1000 mcg B12 or injections I'm not sure. Many many thanks for listening to me and taking the time to support me on my journey!! I hope you are feeling ok - sorry aware my messages seem all about me! Tracey x
Hi Caitlin
Many thanks for your message. Its very informative and helpful. Fortuntely since stopping the high dose Multi B tablets I am just left with the numb toe, fluttering in calfs and insomnia! Regarding my recent blood results I am not sure if my high folate reading measured short or long term folate levels and its very interesting that it is possible to see these two elements in a lab result. Ive had my Folate B12 B6 and MMA re-done yesterday privately at my own expense and results are due back to the Spire next week. The results are being sent to my neurologist and I hope he will pass me a copy to read rather than try and appease me with words! I am sure he will be very surprised if I ask him what the long and short Folate elements are!! I wonder if you could tell me what a Stomach P Cell Antibody and Intrinsic Factor (IF) Test would show; many thanks for recommending these in your earlier message. I mentioned them yesterday to the Spire and the young guy I saw didnt seem to know of them. Out of interest would you know if I did happen to have an auto immune disease or other underlying condition causing issues with my B12 levels who would be the professional that would diagnose this and I wonder what test would reveal such? Am rather confused - there is mention of GP's referring patients to haematologists - given my neurologist's view seems rather closed on the subject I feel I need to gem up on this information myself just in case I need it. I have insurance which is very fortunate. Very interesting to know if the GP's range of normal (150-883) decreased or increased on 3rd December 2013 as mentioned on my blood test! It seems the UK range changed at this point. Seems very unsettling that our 'acceptable' range is so low when according to professional on B12 deficiency deficiencies can show in spinal fluid from 400 or below and some doctors are prescribing B20 injections for 300 or below when others are sending patients off to buy vitamins when their levels are 120! Its also interesting if you read certain other forums - one I stumbled across about numb toes and the menopause there are hundreds of individuals with symptoms the same as those that relate to B12 deficiency and it is being put down to hormone imbalance and they are given HRT or antidepressants or nothing just because their B12 is within "range". I spent 4 months on such a forum trying to reassure myself my symptoms must be hormonally related before I got hold of copies of my blood test results from my GP and saw the levels, drop off over the past 2 years and decided to look into the issue of B12 deficiency. During that time I had multiple scans, MRI's, EMG's, etc all of which fortunately came back negative but the stress of having the continuing symptoms without answers has not surprisingly taken its toll on my health not helped by the dismissive reaction of all professionals involved. Sorry sounds like I'm ranting - I don't mean to - I am just very frustrated at the lack of basic knowledge on the subject!! All the very best Tracey x
Hi again Caitlin
many thanks for your message. Yes I am trying to de-stress but Ive not found it easy after my odd sudden attack on Monday/Tuesday of the scary vision, tremor, terrible aggitation and anxiety symptoms. Didnt feel self induced. Not helped by further tests (have lumbar puncture and more Evoked studies next week - had another brain/lumbar scan on Monday). I do so feel for everyone awaiting test results - as mine have been going on since September its taken its toll on my sanity!!
I will look up TFH that sounds very interesting. Interestingly enough the guy I sought out for allergy testing who gave me counselling instead(!) offers Kinesiology so I will definitely go back to him now I understand abit more about what this practice entails. I was starting to get alittle sceptical when he told me to go home and buy the book "you can heal yourself" whilst I believe there is something in her method, I was hoping for something alittle more scientific at this stage.
I thank you for sympathising on how stressful all this can be - when everyone else around you (fortunately) seemingly seems fit and well it can seem a very lonely journey sometimes. I know everyone has their own issues from time to time but having an unexplained numb foot for 4 months has been very scary and wearing.
many thanks again Tracey x
Many thanks Chris for your wonderfully informative and helpful message. I will certainly check out B12 effectiveness as I was worrying somewhat that if I couldnt tolerate injections or couldnt risk one due to previous nickle allergies etc. Ive tried to find an allergy testing company that could test for cobalt intolerance (obviously high in injections and high dose pills) without success thus far. Its reassuring to hear that I could turn to the oral method of B12 though I had understand if neuro damage is displayed lots of urgent injections were needed (quoted from the B12 Deficiary Survival Handbook by Dr Ghazanfar) I had thought I ate a good diet - lots of veg, beans, nuts, fortified foods, supplemented in the main by a good multi vit with allegedly 100% RDA of B12 and a calcium/magnesium supplement and Omegas plus supplemented milks etc that I was doing pretty well. I also dont smoke and rarely drink alcohol. Even though Ive been vegan Ive never been complacent on the subject and researched and ate what I thought was an adequate diet. I guess if it transpires my ok B12 levels are down to diet maybe my level of 282 would have been lower if I hadnt paid attention to my diet. I am now left feeling that I have to stop being vegi/vegan or else face dire long term consequences. There does appear to be a questionmark over how absorbable the B12 is in fortified foods. Thank you for reminding me that detoxication of toxins can take time. I have had a bad tooth infection on and off for the past 4 - 8 weeks culminating in extraction yesterday but not before taking too many pain killers and anti-biotics. I have invested in some milk thistle and 'good bacteria' pills! I could do with gemming up on some detox methods - eg: colonic irregation (?)
Yes I would admit to suffering from anxiety - this has gone through the roof of late. I had a double family bereavement 5 months ago and the numb foot came on 4 days later and remains. Ive been put through a barrage of evasive tests to no avail. I do not believe the physical symptom is stress related and stumbling across the symptoms of B12 deficiency I am now tending to attribute that to such or similar vitamin deficiency - thats until my neurologist can prove otherwise! It would certainly make sense as even though my B12 levels are said to be 'in range' having acquired copies of blood test results from my GP I can see they have been dropping over the past couple of years. In the meantime I am definitely widening my diet, eating eggs daily, bit of cheese even fish (which is not easy for me). Ive heard the pescatarian diet is the healthiest of all.
I do very much appreciate you taking the time to message me. Best wishes Tracey
Hi Caitlin sorry I missed your message above. Thank you so much for this information. I will certainly see if my GP will agree to refer me for the IFA and PCA tests. The problem with my GP as although I display signs of B12 deficiency (and all scans/electrode tests etc have not revealled anything) persistent foot numbness and other neuro signs as my B12 is "within range" she hasnt been too sympathetic to the idea of further investigation so I may need to look into funding these tests myself - problem is getting her to write off to my private insurer for them! Its so frustrating as I am scared I really ought to have started B12 injections as my symptoms are described as being Grade 3 out of 4 in the B12 Survival Handbook! such book hammering home the importance of immediate injections or else..... I think given my sensitivity issues I am going to have to eat lots of B12 foods, supplement and await results. Not sure what I will do if the B12 levels increase and are still within range and my symptoms remain though!! all the best Tracey
... and yes I will certainly provide my GP with a copy of NICE's Clinical Knowledge Summary if she needs further persuasion. Good luck with your tests at the end of January.
Your advice to date Caitlin has been absolutely invaluable. Knowledge is power and I really can't thank you enough for sharing this with me and others reading these posts. Tracey x
I think the urgency thing in relation to neurological symptoms is that they should not be ignored and allowed to progress and that at one time that meant injections. That won't reverse the damage any faster but the initial booster shots may raise the apparent but not needed forms faster. One reason is that the body is designed for tiny intakes, and sure one might pig out on a buffalo one time and store some for winter, but there are a lot of steps involved in using it that can be rate substrate and cofactor limited. Nerve healing is not instant.
The traditional view was that the only b12 issue was pernicious anemia and a concern that folate supplementation might mask the anemia and the neurological part. Most drs will follow medical association guidelines as to limits and dosage based on this.
However this ignores research since fifty years ago and functional deficiencies. That is because one form is available to be measured that does not mean the other forms are available for use. Normally 5 forms are acknowledged however more specialised research shows that both methyl and adenosyl cobalamins have to be turned into other forms before they can be used. A stress load amongst other things could interfere with that. It is also not uncommon that some people can't use the cyano cheap form often found in supplements.
I don't want to harp on this but there is a UK guy offering therapy for CFS based on NLP in part but more on that the primary brain alarm filter becomes hypersensitised and patients become hypervigilant of possible symptoms. He has published in medical hypotheses I think and done a trial report. I think he also offers a dvd type course. The reason I mention it is not that it applies specifically to you but I am familiar with the area.
Yes it can be a pain dealing with medical issues and practitioners. Tee hee.
One has to become informed bearing in mind that the research and knowledge is not definitive and one can easily be wrong, as well as not suitably deferential.
Getting some base tests done is a good idea but ultimately the test is what works for you.
Have fun.
hi tracey. my system's in 'snail mail mode' so i may have to do few short chits instead.
well done on completing those tests. they'll give clarity & accuracy on ur actual ''active'' b12 levels to inform the next concrete step forward.
tracey, i'm wondering if ur insurance cover allows for private GP services. if 'yes, u could make an appoinment and negotaitate a b12 IM 'test' dose in a safe hospital environment. our Nuffield/Spire hospitals have these facilities - moonlighting GP's lol.
more later
C