Sudden high Folate levels - what could this mean in relation to B12?

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

Thank you so much Chris for your message.  Its fantastic to have such information provided - my GP's and even my neurological seem fairly clueless - that was until yesterday when my GP appeared to change tack completely and sat up and took notice of my symptoms.   Ive seen three separate GP's in the past week and they all have differing opinions - its quite frightening.    Is your feeling that B12 pills would be suitable for someone displaying neuro signs? I get the feeling when it reaches this stage - my numb toes started 4 months ago and the more frightening symptoms a week ago that injections are the only way to go.  I am just off to study oral B12 effectiveness - many thanks for that suggestion. I definitely agree about the detoxication of toxins.  I am so sensitive to alcohol - half a glass of wine and I feel drunk!  caffeine and even pain killers sometimes make me feel odd so Im not suprised that the horrible symptoms of the past week that came on a day after taking three days of high dose Vit B Complex.  I have taken them sporadically over the past 4 months or so and just experienced red spots on my face. There are forums on B6 toxicity where individuals have suffered exact the same bad reaction (to those symptoms of B12 deficiency - confusing or what) after a few of these pills.  There are days when I wonder am I suffering B6 toxicity or B12 deficiency!  I think I have to assume for now that given my vegan diet despite supplementation and fortified foods, if it does transpire I have B12 deficiency despite being 'in range' 282 (blood tests) that I have to change my diet.  I wish Id made the connection 4 months ago when my toes first went numb instead of exposing myself to 5 different MRI scans, brain scan, cerebral brain scan and evoked potential tests (and even a lumbar puncture tomorrow!)  all ordered by my neurologist who feels my symptoms are purely anxiety!     Many thanks   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

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

Hello Caitlin      yes I am sure my insurance would cover such a service - sorry but are you meaning to have the injection in hospital just in case of a reaction?   I had thought about that and wondered if it was a possibility.  We have a Spire Hospital in Hove - I live in Shoreham by Sea, West Sussex so its only 20 minutes away.   If I dont feel well later on in the day after taking my second B12 pill I am inclined to postpone Lumbar Puncture and try and get an injection done tomorrow - dont feel I can waste any more time given my symptoms.   Also the trauma of a lumbar puncture probably isnt ideal timing.  I had a tooth out 2 days ago so I have lots of bruising so am not in the best of places!!   All the best - Tracey x

hi tracey. i'm so pleased that ur GP has been educated on b12 def. this is the begining of some more appropriate focus on behalf of the medics.

tracey, my computer is on it's last legs & keeps deleting my messages as i write them. this is my 4th effort. if u want to contact me off line, i can pass u my deatils if u want to chat things through

Caitlin.

Hello Caitlin

Many thanks for your message.   Yes I agree its good at least one doctor in my practice now knows alittle more about B12 deficency; shame she didnt share what she'd learnt with her colleagues!  With all the notes issued by NICE I am very surprised most of them are still relying on the blood test 'range'.   I think I'll send them all a copy of the B12 Deficiency Survival Handbook!   Its certainly an eye opener to me that a mere vitamin can have such a fundemental affect on ones health.  Thank you very much for offering to chat things through - that would be very much appreciated.  Thanks to you and the other people on this forum I dont feel so alone.  Many thanks  Tracey x 

hi tracey. think NICE is a tiger without teeth & medics are a law unto themselves so the public don't have much bite lol?

at least u have shook up your lot and hopefully the 'knowledge' will become infectious. maybe we'll have a national outbreak of knowledge. what a treat that would be for the general public? u've done good girl - clap on the back there on behalf of humanity. how r u feeling this evening?

C

Hi Caitlin   yes I agree,  not very reassuring though to think medics are in charge of our health - its more than scary!    I work in the Law and we are regulated by the Law Society. Its a very different scenario!   Step out of line and you seriously risk losing your Practising Certificate! 

Ive lost count of the some of medical people Ive seen over the past 4 months and not one of them has ever mentioned a possible vitamin deficiency and they know I'm vegan!   There really should be a questionnaire given to anyone presenting with symptoms symptomatic of B12 deficiency.  So much time is wasted going round the houses.  I can hardly believe I've seen a neurologist, neurosurgeon, spinal surgeon, foot surgeon, podiatrist, chiropractor and physiotherapist!!!  Thankfully I am insured but what a waste of time and money.  

Thank you for asking how I am.  I took after B12 tab last night and apart from the odd fluttering in the leg and tingling feet I feel ok so thats good.  Still woke numerous times in the night - insomnia really is a new experience for me; not nice.  My calf muscles feel very tight in the leg with the numb toe - I am hoping its just tension and the same goes for the chest tightness and odd feeling when swallowing.  I have been so lucky in life to be well until this glitch four back ago and I have found the endless waiting for test results and getting no where very stressful indeed.  As the numb toes came 4 days after a double bereavement its been a very tought time. I do so feel for anyone in the same position.  At least with a diagnosis you can have a plan of action.

I hope you are feeling ok and enjoying the weekend despite the wet and windy weather.    I'm just off into Brightont to choose a birthday present.  47 in a couple of days time!!   all the best     Tracey x

hi again tracey. the other option. in my city the Nuffield have a private GP facility within the hospital. u could make an appointment, explain ur situation and ask if she could ''test'' dose u (tiny amount) whilst ur on the hospt. campus. apologies for fragemented messages. PC playing up wiping out my messages.

C

Thank you so much Caitlin for your two messages.  To switch off my allergic responses would be fantastic.  Just this afternoon I ate some fish (as mentioned earlier Ive been vegan for many years)  after a few minutes my throat started itching;  I had a similar reaction when I ate an egg sandwich and put some milk in tea, the latter also brought about a loose cough (common with lacto intolerance) and when you dont eat a particular food for many years how you can seem to build up an intolerance.

Not great when I am trying to eat foods containing natural levels of B12.  I am going to try hiding them in dishes to see if that helps.  I will certainly get in such with our local Nuffield and see if I can discuss my issues with any private GP facility there.  That would certainly seem the sensible way forward if it transpires I need B12 injections next week.  I'll let you know how I get on.

thanks so much for all your wonderful information.  It has really lifted my spirits when I was really worrying where I might go henceforth.   Tracey x 

hi tracey. hope the throat has settled down? tracey, until the hyper stimulated immune response settles down a bit, i'd say go easy on the non vegan foods i.e introduce new non vegan food SLOWLY i.e. one at a time & only a small amount at a time. i'd steer clear of the fish until we know what's happening elsewhere. coz ur body (immune system) has not had non vegan foods fot 20 years, it's likely to 'interpret' (or misinterpret ) them as foreign bodies (bacteria/viruses etc) to be fought off, hence the reactions you're having. this will only put more stres on an already over stimulated immune system & a body that feels it's been a battle ground for the last 4 months.

Hi Caitlin    many thanks - thats very sound advice. I think Ive been keen to get as much B12 foods in as possible Ive overdone things.  Yes it definitely feels as though my immune system has been stimulated somewhat over the past week particularly it appears since taking the Ultra B tablets.  Dont know if is a concidence but up until then I just had numb toes.  After taking the B tablets all the horrible symptoms appeared and my system has been hypersensitive.  I could eat egg sandwiches without problem before this week!  Whilst on the whole the vision, balance, anxiety have settled down, the numbness is now affecting my foot and it appears leg up to the knee. I hope to get the results of MMA, Homocistine and Immune system tests imminently which might shed some light on matters.  In the meantime I am going to have the lumbar puncture done tomorrow as the appointments are scarce.  Ive emailed Spire Brighton and local Nuffield to see if they could offer private GP service so I could have a small 'test' dose of B12.  My throat has been itchy most of the day so I took a piritan which seemed to calm it down. I will speak to my GP tomorrow and explain the symptoms and the feeling like blocked osephagus.  My GP has been speaking to another 'clinician' so hopefully that person will be able to help her understand whats going on with me.  many thanks  Tracey x

hi tracey. v.plsd. to hear the medics are full on behind u now. tracey i feel that 'loading' on 'new' b12 rich foods may not be that beneficial right now. the body will have to re-learn how to handle them (absorb/assimilate/utilize them) and the energy utilized to do that needs to go to keeping the body in a state of optimal homostasis. absorbtion will be minimal and the 'tax' on the body too much. your body needs 'gently, gently, right now. the piriton is a good idea. it'll help prevent any swelling like that sense of fullness in you oesophagus.keep in mind that the numbness is reversable , so try to not let it stress u unduly. keep the 'reversable' bit in the front of ur mind, that'll help to keep things in check. think it would be a good idea if u could speak to the clinic if u have time before the lumber p. tom. well done on getting allthe other organised. ur doing really great as most of us fall to pieces when confronted with so many physical challenges.

hi tracey. as i tend to 'nod off' towards morning when ull be getting organised for the LP & all the other organisation u have to do. so all good wishes for tomorrow. will keep sending u positive thoughts.

hope u get some 'shut eye' . rest & sleep r ur body's best allies.

C