I've posted here before re. peripheral neuropathy (since May this year). I have autoimmune thyroiditis and atrophic gastritis. Back in 2010 I was diagnosed as needing B12 injections quarterly but these were stopped in 2012 when I became pregnant and weren't resumed again despite my asking.
So I've been supplementing with sublingual B12 ever since. In 2017 I was found to have atrophic gastritis but blood tests for PA came back negative although it was suggested the results could have been affected by my supplements.
This year I had blood tests done for my thyroid as I've resorted to self treating. My vitamin D, folate and iron levels were very low. Nothing too surprising for someone with thyroid disease. I now take methylfolate, increased D3 sublingually and methylated B12, again sublingually. I took a LOT of B12 actually, and my results in late May showed my active B12 to be way over the upper limit. I've since lowered my intake.
I've been referred to see a neurologist as my tingling and numbness in my hands and feet is a fairly new thing. It's getting worse, with the numbness spreading up my right leg. My right arm feels weak and occasionally I get a very slight tremor in my ring and little fingers. I feel very anxious and jittery in the mornings, get a lot of headaches and pain in my left eye. Also, dizzy spells, forgetfulness etc. Obviously, I'm freaking out thinking it's MS. I have a six year old little boy and I want to be well for him.
But is it worth staying off B12 until after my consultation to see what comes back from any blood tests? Are they even likely to test B12? My GP denies B12 deficiency as a possibility as my red cells aren't enlarged, despite my giving her a lot of info from this forum. I've asked for copies of the original medical notes from 2010 (I lived in a different area then) to see exactly why I was prescribed loading doses and B12 injections.
A recent cortisol test came back as normal. My neurology appointment will likely be in late September.
If your active B12 is off the top of the scale it means that it is definitely getting into your system. If you've been taking the supplements for that long then it's unlikely that your neuropathy is caused by a B12 deficiency.
It might be worth switching over to cyanocobalamin, rather that methylcobalamin, a some people report unpleasant effects from the latter - especially the anxiousness and jittery feelings.
Certainly, but studies have shown that there is no significant difference between the amount absorbed from an oral dose and a sublingual dose. The B12 molecule is too large to cross biological membranes unaided. So the sublingual B12 is swallowed and absorbed via the gut.
I just read through some of your previous posts. I am having somewhat of a similar experience to you. I was dx with Hashimotos back in June 2017 after a bout of postpartum thyroiditis. I was put on 50 mcg levothyroxine and was on that for 6 months before I all but begged for a trial of cytomel due to unrelenting body aches muscle pain and joint stiffness. In addition, a few months after diagnosis with hashi, but before I was medicated, I developed eye irritation and puffy eyelids from which I was prescribe steroids for a bit and now just do a scrub with moisture drops. I did a lot of other autoimmune screenings and just came up with a positive ANA. Anyway, I continued to not feel well with the cytomel because it gave me big energy crashes, but it felt better overall to be on it until one of my routine tests revealed I was overmedicated so I stopped the t3 and we back on straight levothyroxine for a few.months. my TSH shot up to 14 and I had a lot of swelling on my gland it was obvious I needed some T3. Around this time, a year after I started the Synthroid...I also developed mild Neuropathy. I thought it was that I was low on t3 so I added NDT (.75 mg) on top of my 50 levothyroxine. It helped initially, but at times I feel hypo again especially around ovulation or before my period starts. I still get the aches and pains and muscle stiffness. The NDt has not helped with the neuropathy though and my lasted results were pretty good. At first the tingles were just on my hands. Then it moved to my whole arms. Then i noticed it on my legs and maybe on my face a bit. It feels like an electric current or a sun burn. My vitamins are low but in the ranges but my endo doesn't think that's what causing this. Just this week, I started also getting muscle twitches on my legs and a little on my lips and arms. It's very annoying. I have an appt at the neurologist in a couple weeks and I am of course quite nervous for what they will find. I have a 2 year old and a 6 year old and I need my energy and body to be in working order. I have been tested for sjogrens antibodies which were negative but I know a lot of people with the disease don't have antibodies. But I don't have any dryness and the eye doctor i see said my eyes aren't particularly dry either. She said it would be odd to have it without those symptoms, but I have some oral manifestations like a burning tongue sometimes and tightness under my jaw like maybe my salivary glands are swollen. My GP is insisting that I have fibromyalgia, and the rhumatologist who I saw also said this was a possibility. But, I'll see what the neurologist says...it's certainly getting worse. I've actually wondered if I am sensitive to the medication fillers? Im looking for answers too. Good luck!
Neurological symptoms are scary... I think I've been grasping at straws really to avoid what's pretty obvious; I started with weakness in my right arm about 18 months ago, long before I was given any thyroid medication. Then my left eye was getting painful and a bit unfocused despite an eye test showing nothing abnormal. This has since progressed to tingling fingertips, burning feet and pins and needles in my extremities. The numbness climbs up my right leg and my hands go numb at night when I'm in bed.
If I'm totally honest, all signs are pointing to MS. And that's frightening with a young child. We'd need to renovate our house, sell it and move closer to friends and family (and better healthcare). With hardly any funds to do all that.
Obviously, if this is the case I need to see the neurologist as soon as possible and get on some kind of treatment. But having this confirmed is something I dread. As it is, I was referred at the beginning of June and apparently it'll be late September before I get my appointment. It's an agonising and stressful wait.
I hope everything goes well with you - your symptoms sound different to mine and maybe they're linked to your medication?
You might want to discuss this with your neuro : I’ve found that following MS research for treating the damage to the myelin sheath very useful for treating nerve damage from long term b12 defiency very useful. Lions mane, high dose pharma grade biotin 100 mg 3x a day , gotu kola have all been found to assist in remyelination. Working wonders here.
Found that hydroxocobalamin only worked for us b12 wise (methylcobalamin was useless).
Hello, I saw the neurologist. She did a few standard checks and copied me into the letter she sent to my GP. She said I don't have neuropathy but noticed the tremor in my hands (it was a hot day and the heat sets it off). She thinks an MRI scan will come back clear. I'm not convinced.
It still seems to me that the symptoms point to MS. I now also have tingling and pain in my face, and the constant buzzing in my right foot won't go away. I can't have hot baths any more. This has been going on for 7 months now and more strange symptoms keep appearing. Although I seem to have improved the annoying involuntary muscle twitches by starting magnesium supplements again...
I have the MRI in a few weeks and although I know it has to happen, I'm dreading the results as they could very well confirm my fears.
I’m in a very similar boat. I have been having some similar issues for the last few weeks and have been clinging to this idea that maybe it’s b12 even though I know it’s probably not. I had my scans yesterday and am waiting for the results but would be shocked if they were clear.
Hi little island-I thought of this thread randomly and remembered somehow in my reading of your experience that you had an mri in November? Is that correct? How did it turn out? I’m asking because my symptoms are similar to yours. I had an mri and it showed nothing. I went to a functional dr today and he thinks I have heavy metal poisoning and gluten and dietary sensitivity. I don’t know if these people are quacks or not but my neurologist pretty much gave up on me after the clear scan. Anyways, I hope your issues have disappeared or you have found help.
Hello, sorry for the delay in replying - we've been away for Christmas and I'm in catch up mode...
Yes, I did have an MRI and received the results on 9th December. The scan came back completely clear thankfully (after nine months of worrying I had a progressive condition). The neuro said she thinks it's a 'functional neurological disorder' with no known cause. I'm supposed to be having a nerve conduction study done at some stage, but beyond that she gave me the address of a website to look at and that was all. Apart from the offer of seeing a neuropsychologist. The usual suggestion that it could all be in my head, basically.
So I won't be taking her up on that. Why give them more ammunition?
I'm thinking the symptoms are down to a nutritional deficiency of some kind, or my thyroid hormones not being optimal. Either way, I'm on my own as the GPs at my surgery know virtually nothing about any of those things and are unwilling to listen or educate themselves further, hence the usual lazy diagnosis of 'neurotic female needing antidepressants'.
Interesting about your dietary sensitivities. I'm gluten free and gave up dairy but went a bit mad on milk, cream, chocolate and cheese over Christmas. I noticed my psoriasis (which luckily isn't in a visible place) flared up a lot. As for the heavy metals, I've wondered about that too. I have a mouth full of amalgam fillings!
I'm always open to a functional approach. Conventional medicine doesn't seem to be getting me anywhere...
I would like to keep in touch. It seems the odds of that happening to both of us would be quite low with such similar symptoms so it would be nice to compare notes. Very interested to know you have a mouth full of fillings! I’m going to consult with a biological dentist Thursday but it’s a lot of money to change fillings out not knowing if it’s a real cause. Functional neuro disorder is a kind way of them telling you it’s all in your head. No one said that to me but I’m sure that’s where it would have headed if I had pressed the neurologist for another appointment.
Are you in the UK? We live in the Western Isles (Hebrides, Scotland) so access to more functionally-minded practitioners is really difficult. I mentioned replacing my amalgam fillings to my dentist but she said there's no reason to...
As for the functional neuro thing, it's pretty frustrating. I'm not entirely sure how you can 'imagine' pins and needles, numbness and tremors. I actually feel less stressed at the moment than I have in years so I really can't see how my state of mind can be causing very real and noticeable physical symptoms. So annoying to be dismissed - my GP and neuro absolutely refuse to consider there could be a hormone/nutrient/toxin link.
Let me know what the dentist says - I'd be interested to know!
Hi, I've been looking at some old posts and saw yours and Mes814 so hope that you both see this. Really just wondered if either of you have MTHFR or COMT variants or have checked either methylation or detoxification. I have some similar issues - some signs from nerve conduction tests by neurologist, lots of numbness, unhappy thyroid, other autoimmune issues and a mouth full of fillings. Neuro hasn't said functional yet, but it wouldn't surprise me. Poor methylation affects your ability to break down (for use or to get rid of) metals, toxins, oestrogen and lots of other possible effects. I have been better in some ways since going completely grain free (gluten only wasn't enough) and dairy free, also nightshades & caffeine. My detoxification is poor so I am on a supplement to give it a boost. Hope you are both doing better. Best wishes
Thank you for reaching out-I had some very thorough testing done at the naturopath and I have a MTHFR variant but it isn't the biggie one they're always talking about and I'm not familiar with COMT. I am actually feeling a little better but it's different week to week. I had someone who specializes in autoimmune disorders suggest it might be lyme disease but that's kind of a catch all diagnosis as well. I just saw little island's last post as well. The dentist said the fillings needed to be replaced but he didn't say anything particularly interesting about neurological issues and whatnot. I'm still nursing so they won't remove amalgams until I wean because it stirs up the mercury and whatnot. I went gluten free for awhile and I did feel better. I actually went like EVERYTHING free but I'm prone to weight loss so I can't do it for too long or I waste away. I suspect I don't metabolize properly or something along those lines, but really haven't gotten to the bottom of any of it. Kind of just learned to live with a new normal and hope that it doesn't get worse.
Hi, glad to hear that you are feeling a little better at least some of the time. I'm much in the same situation - varies from day to day. COMT affects neurotransmitters, dopamine, adrenaline etc but can have a knock on effect on your methylation. Have a look at beyondmthfr.com/a-genetic-c.... I also am only hetero for MTHFR but also have COMT SNP. I think the ideal is to be +/- with COMT as you don't want either to break down too fast or too slow. Mine is +/+ and too slow. If you aren't methylating well then getting rid of toxins will be much harder and slower, which could in itself result in neuro issues. I know that my detox is bad so definitely wouldn't consider getting rid of mercury fillings unless I knew that I could bind it and get it out rather than just stir it up, as you say. Even having an MRI recently made me feel truly ill which I suspect was at least partly due to stirring up toxins. Simple things like trying to get vitamin and mineral levels better especially magnesium, Vit D, and adding an amino acid supplement as I was absorbing badly have helped a lot, but obviously you will be restricted in what you can do whilst nursing. Best wishes to you
I've only just spotted this thread so apologies for not responding sooner.
"I'm not entirely sure how you can 'imagine' pins and needles, numbness and tremors"
I empathise and am sorry to read you are experiencing this attitude.
I was diagnosed with hypochondria, psychosomatic symptoms, MUPS (medically unexplained symptoms), told it was all due to depression etc etc despite having many typical symptoms of B12 deficiency including multiple neurological symptoms (had tremors).
When I eventually worked out what it was I fought for treatment and asked every doctor if it could be B12 deficiency and was fobbed off. In the end I treated myself for a couple of years but was fortunate enough to get NHS treatment finally when I finally met a GP who actually listened to me.
I now have a life that I can enjoy.
I had some very unpleasant experiences with doctors though.
"atrophic gastritis but blood tests for PA came back negative"
Another name for PA is Autoimmune Metaplastic Atrophic Gastritis.
Click on the underlined parts in link for more info about petition.
I wrote a detailed reply on another forum thread with links to other B12 books, b12 websites, UK B12 documents and other B12 info which might be of interest.
Thank you for all this information. I've just returned from New York and now have an ill seven-year-old to contend with, hence the late reply!
According to the gastroenterologists, my first endoscopy showed atrophic gastritis but my second didn't. I can't get a straight answer from them - it takes months of asking for a referral only to be discharged back to my useless GP after a pointless conversation and instructions to take Omeprazole.
I've tested negatively twice for H Pylori, most recently a year ago.
I also tested negatively in 2017 for celiac, although I didn't stay on a diet containing gluten as I felt so unwell so the (then private) consultant thought that could have affected the results.
I've also tested negatively in both PA tests (IFA and PCA). Again, the private consultant - who was excellent and offered to see me as a NHS patient but we moved out of the area - felt that I could have skewed the results as I was supplementing with a lot of sublingual B12. Recently, my GP said I couldn't have PA as my red cells weren't enlarged, but I also supplement with methylfolate.
I'm having a nerve conduction test on Friday at the Neurology Department (130 miles away and we have no motorways here in the Highlands!) but don't expect much to come from that. The usual inference that it's all in my head etc etc. Although there's no arguing with the fact that my feet are permanently tingling and my hands are going completely numb at night, which wakes me up. I also get it in my toes, and have pins and needles a lot.
I plan to get more blood tests online, to check my thyroid levels etc, then to try self injecting with B12 just to see if it has any effect on the neurological symptoms. I'd like to go back to the nutritional therapist too, but what with the cost of supplements for Hashis, trying to sort out my gastro issues and blood tests, thyroid medication (I self treat due to poor management by my GP) and now buying B12, it gets very expensive and I'm not in a position to do everything just now.
"The usual inference that it's all in my head etc etc"
I had years of that sort of attitude and continued to deteriorate.
"tested negatively in 2017 for celiac, although I didn't stay on a diet containing gluten as I felt so unwell"
If you had stopped eating gluten before the tests or were only eating small amounts or just eating it occasionally that might mean even if you are Coeliac, not enough antibodies to gluten were in the blood to register a positive result.
What tests did you have for Coeliac?
In UK, it should be tTG IgA and Total IgA.
UK Gps sometimes forget to do the Total IgA test.
tTG IGA checks for antibodies to gluten.
Total IgA checks which patients have IgA deficiency.
Patients with IgA deficiency need different tests for Coeliac.
See Coeliac links in my other post.
My understanding is that patients who have symptoms consistent with Coeliac disease after negative Coeliac results should be referred to a gastro enterologist. See NICE Coeliac guidelines in other post.
"Recently, my GP said I couldn't have PA as my red cells weren't enlarged,"
About half of people with b12 deficiency do not have macrocytosis.
I suggest reading BSH guidelines (link in my other post) .
Articles from Dutch b12 website that mention patients often do not have macrocytosis (enlarged red blood cells)if they are B12 deficient.
Hi, I do have a print out from the first endoscopy stating atrophic gastritis but not from the second - just a letter saying the results were 'reassuring'. Hmm.
Regarding possible celiac disease, I stick to a strict gluten free diet anyway as I have Hashimotos and feel better without eating gluten. I'm not sure what tests they did for it at the time - the letter detailing it all is *somewhere* in my files, but I'm huddled up in front of the computer in a draughty house in the Hebrides and don't want to go looking until the gales subside a bit!
I had a nerve conduction test done on Friday. The doctor said it's unlikely my neuro symptoms are due to a lack of thyroid hormone or B12 as I don't have any nerve damage. Obviously, I could go on to develop nerve damage in time - as a result of B12 deficiency - but what's the point of arguing with them? I've only had neuro symptoms for twelve months and it could take years for actual damage to occur.
I think the only way to go is to try self injecting and see if my symptoms subside. Also, to get my thyroid levels tested privately (yet more expense) to see if I need to increase my meds - again, I'm self treating for this due to woeful ignorance and arrogance on the part of the GPs in my practice.
I'm sorry to read you've had to be your own doctor.
It happened to me...I wanted someone to take over trying to find out what was wrong with me but none of the GPs when I was at my most symptomatic really listened. It was really hard reading scientific articles, treatment guidelines etc when my brain was more like cotton wool.
Sometimes when all efforts to get NHS treatment fails, people in UK resort to self treatment...I did when it became clear that I was headed for dementia and spinal damage if I didn't get treatment.
"have a print out from the first endoscopy stating atrophic gastritis"
Another name for PA (Pernicious Anaemia) is Autoimmune Metaplastic Atrophic Gastritis (AMAG).
Is it possible to write to the specialist who did the first endoscopy and ask what they thought the likely cause of the atrophic gastritis was?
Besides PA, I have read that H Pylori infection can lead to atrophic gastritis and I think Coeliac disease can.
Yes, I can try and write to him but it was three years ago, so I'm not too sure whether I'll get very far. I know he stated 'no metaplasia' and that the gastritis was 'mild' though. The second endoscopy, the specialist was very good and suggested some mild inflammation. And to take PPIs - which I've finally decided to do for a few months to try and allow my stomach to heal, if that's possible. I avoided this for three years. There are lots of arguments against PPIs, particularly in functional medicine circles, but Dr Michael Ruscio (a nutritional practitioner recommended him to me) speaks a lot of sense on the matter and suggests a short course of them if gastritis is present, before progressing to other methods in order to heal the gut: diet, supplements and so on.
I've been tested twice (breath test) for H pylori and had a negative result both times. Although the test isn't supposed to be 100% reliable (apparently the most accurate way is a stool test, again privately, again more £££)...
As for possible celiac disease: I intend to stay gluten free for life now and I think that's the 'treatment', as far as it goes, for celiac.
I absolutely hate having to do all this research. My strengths are on the creative side of things (I'm a writer and artist), and science confuses me. I feel like I'm studying chemistry and biology at degree level most of the time! That and the endless expense. I feel like I've drawn the short straw in many ways.
For a non-smoking, non-drinking, processed food-avoiding non-couch potato not quite at middle age I feel I've got the health profile of Keith Richards!
I Googled the 35 symptoms of menopause/perimenopause a while back and tick a lot of the boxes. I'm 45. Periods still regular but awful... I'm thinking it's a combination of hormonal stuff and vitamin deficiencies. I now self inject B12, have just been put on iron tablets for my consistently low levels, and a phone consultation with a very good NHS gastro consultant in May was interesting as he suggested celiac disease. Could explain deficiencies (that and having to take PPIs for gastritis). It's very complicated.
But I'm not buying the 'functional nerve disorder' the neurologist came up with. 'Functional' is a term often applied to women and is a polite way of saying 'imaginary' when actually further investigation often leads to a diagnosis of autoimmune disorders or other very real conditions.
Perimenopause can lead to a lot of imbalances, it's not just about oestrogen and progesterone. It can also exacerbate underlying issues.
I had all the 'nerve tests' you can think of and they all came back normal. I had different diagnosis by different doctors, rheumatologist = fibromyalgia, orthopedist = carpel tunnel syndrome, neurologist = central pain syndrome, endocrinologist = metabolic syndrome... They have prescribed tons of meds. I haven't taken any of them.
I'm still being evaluated by other doctors, but neuropathic symptoms have been decreasing steadily as my body gets used to the low oestrogen levels (I'm not on HRT, 3 years postmenopause).
Yes, I've been diagnosed with CFS in the past. One local GP referred me for counselling because he thinks my problems are down to 'anxiety'. He tends to follow this script with most women... I've got an eye test 130 miles away next week, the last of the tests ordered by the neurologist. I'll go along but I'm not particularly bothered.
I've considered asking for blood tests (hormones) but the doctors in our practice are very dismissive at best, contemptuous at the worst. It's annoying. Our house is on the market and we're planning on moving closer to civilisation and hopefully better healthcare!
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Daughter’s low B12 - what to do
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Would blood tests 3months after last b12 injection be accurate?
