New - B12 under 500

Hi

I'm new to this community. At my wits end. I have B12 levels of 397 (480 in 2016), Hashimoto thyroiditis, Reynauds, and on synthroid and estrace. Also diagnosed with low platelets and low calcium. I have tingling and numbnesss in hands and feet and now arms. Itchy back (dermatologist said it's nerve related no rash) for several years. Sometimes get nose bleeds, had dry mouth, burning tongue and fatigue on and off. I've also had little red rashes and sometimes bruise easily and cuts take a while to heal. A year ago, I started having a bit of urinary incontinence. My family doctor says that I'm within the "normal" b12 Levels. She also conducted a neurological assessment and says I'm fine. I have suffered from vertigo, my eye sight gets a bit fuzzy and have floaters every so often. Feel confused sometimes although could be because I'm stressed by this. Mid 50s and otherwise healthy. All my blood work has ruled out inflammation or cancer, no diabetes, no lupus. So I have this neuropathy and I'm very worried because I feel I'm not being heard. She wouldn't do other tests and had to beg her to do vitamin tests. when I told her my b12 levels would be considered low in Japan she dismissed and said that equipment could be different and in canada it's different. I would appreciate your advice. Worried about permanent damage and think B12 shots might help. Thank you.

53 Replies

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  • Nothing jumps out at me as being obvious. I looks as though convincing a B12 deficiency with levels just below 500 could be an up hill task. You could try self medication with sub lingual B12 to lift the levels higher for perhaps 6 weeks and assess.

    I was wondering if you might be a shallow breather so might have low blood Oxygen. Not that this is a cause.

    The level of serum B12 when symptoms are experienced appears to be very different from one person to another.

    Perhaps your 'normal' B12 level would have been considerably higher in the past than now.

    I know in my case that after treatment serum B12 stabilised at around 800. I sometimes wonder whether as part of a well man or woman assessment a baseline B12 test might not be a bad idea, to know what is normal for a certain person. Any thoughts anyone?

  • Thanks my B12 was 480 last year and it is 397 as of last week, and i have some very clear symptoms namely tingling in my hands/feet and arms that is constant, plus itchy skin, etc. Classic neuropathy symptoms. I have read that on Mayo Clinic site that patients with B12 levels between 150 and 400 ng/L are considered borderline and should be evaluated further by functional tests for Vit B12 deficiency and further testing of MMA levels. Plus my platelet count is low at 129 and has been steadily decreasing. Thanks

  • There are over 80 possible causes of peripheral neuropathy. With a high level of B12 it's more likely to be one of those 80 than a B12 deficiency.

  • Hi there

    I live in the UK and I am also new to this and my B12 was tested at 46 initially. I do agree that a B12 check would be good but I think that a health authority wide consensus of minimum levels and indeed a universal agreement on what is low levels and range limitations is long overdue.I have sadly found in my short experience that Doctors seem to be unaware of the debilitating symptoms and issues related to b12 deficiency.

  • I agree, esp as Folate has a WHO minimum. Problem I guess is that NHS will not agree because even with Folate, their minimum is about 25% below WHO minimum.

  • Hi Anne,

    until I had these symptoms, I had no idea how important B12 is. I don't think they screen for it regularly. In fact, I had to request that my doctor check my level. My concern is that there are so many people who go untreated and it wreaks havoc if not Treated. Agree with you on long needed overhaul to the standards. It seems that doctors cannot think outside these ranges.

  • Hi Aprilinparis

    I agree completely that there must be many who are undiagnosed. The lack of understanding and also proper guidelines is very disturbing. I have personally found that the medical professionals seem unable to link PA B12 Deficiency with so many symptoms. I spoke to a Doctor last week regarding the possibility of leaky gut but had no idea what I was talking about. Thanks for your reply.

  • Sally Pacholok and Dr Stuart consider B12 test levels are set too low, as does Professor David Smith, especially for people over 60 years of age.

    In any case, test results at any age should definitely not be taken in isolation - latest BMJ medical research advises that symptoms are paramount, especially when combined with autoimmune hypothyroidism - although many symptoms overlap, in view of your neurological symptoms, possible malabsorption should be investigated - you may already have seen this link posted by Dr John Midgley, scientist and advisor to TUK, which shows the progression of Hashimoto's (HT) to gastric atrophy leading to impairment of the parietal cells and eventually PA.

    journal.frontiersin.org/art...

    "The natural history of HT is the progressive reduction of thyroid function till overt hypothyroidism (24) with a rate of progression of 2–4% per year (23), while that of gastric atrophy features the progressive reduction, till disappearance, of parietal cells, leading to reduced or absent acid production (3, 22). These alterations interfere with absorption of essential nutrients leading, at first, to iron-deficient anemia, followed by PA if the self-injurious process involves the IFA".

    b12deficiency.info/what-to-...

    In any case, it is surely advisable to catch B12 deficiency in the early stages than wait for neurological symptoms to cause permanent damage.

    .........

    PS. From Sally Pacholok and Dr J Stuart's excellent book, " Could it be B12? - an Epidemic of Misdiagnoses" :

    "B12 deficiency can strike anyone at any age but some patients are at far greater risk than others. THe majority of cases of B12 deficiency stem from malabsorption disorders (see chapter 12), and seniors are at highest risk because 30 to 40 per cent of them have atrophic Gastritis. This condition(as well as chronic proton pump inhibitor use) drastically reduces levels of stomach acid needed to free B12 from animal proteins."

    "At this time, we believe normal serum levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml."

    cmim.org/pdf2014/funcion.ph...

  • Thanks so much. Yes I saw that study and agree with you 100%. My concern is that Family Doctors/Specialists are so married to the "normal" ranges and don't look at this holistically or at the actual symptoms. I wouldn't be complaining if I didn't have tingling feeling, fatigue, dry mouth/burning tongue, incontinence, fuzzy vision, nose bleeds. I'm a healthy 57 year old woman otherwise.

  • Have you tried banana tea for magnesium? Rinse banana, easier before peeling. Organic of course. Eat banana, Cut dark ends off peel, put rest of peel in a small pan and cover with water. Simmer for 5 mins. Drink liquid. V high in Magnesium, comes naturally in a plant so no question about absorption. Cheap, easy on digestion. Far better than supplements. Per Dr Breuss ( website: sleep doctor) B12 needs Mag to metabolise.

  • Hi Lynn, no I haven't tried banana tree for magnesium. What a great idea! In addition to being borderline B12 def I have hashimoto thryoiditis and learning that I should be looking at diet more. Thank for your suggestion and reminder of importance of natural food and source.

  • Hi Polaris, very interesting post/info. I have sim symptoms, burning mouth, ulcer on tongue usually, spots corner of mouth, burning hands /feet and on and on.

    I had parietal ab test - negative. Is this totally different to Gastric Atrophy?

    So pareital cells can decline without antibodies against?

    Would you say from research that you have done, that we can be proactive to prevent atrophy by ensuring eat orgnic lemon or cider vinegar with as many meals as possible? Which is what I do now.

    Agree totally re B12 levels: Dr Daniel Amen functional nutritionally practising psychiatrist/ Spect scan of functioning brain evaluation/brain envy guy states always be top of the class with B12 so 1300 in Japan.

  • Hopefully, someone more knowledgeable will be able to answer in detail your questions about parietal tests, IF and gastric atrophy but research as well as others' experiences on the forum indicate that these tests are not always reliable anyway, so you may still have PA/B12 deficiency even if they come back negative - I believe this happened to Martyn Hooper.

    I have Hashimoto's, and had long standing digestive issues, i.e. gastritis, reflux, H/Pylori, IBS, gall bladder pain, etc. which all disappeared with gluten free diet and taking daily spoonfuls of organic sauerkraut (better than any other probiotic I'd ever tried - other 'bitters' seem to work well for other people - question of trial and error).

    The g/f diet and sauerkraut seemed to be working well and I was supplementing with Jarrows SL B12 tablets but. being no spring chicken (hydrochloric acid starts to deplete from the age of 60) I experienced neurological symptoms early this year after two viruses, so now self inject with ever improving results.

    My own family's experience is that B12 deficiency symptoms are very subtle and creep up slowly over the years, so looking back, it would seem essential to get to the root cause as early as possible before neurological symptoms set in.

    More and more researchers are concluding that the root cause is 'leaky gut' but there are still too many GPs not willing to read the research or concede this and would rather prescribe a drug for particular symptoms only, sometimes stopping vital B12 injections altogether 😨

    Thank you - will google Dr Daniel Amen.

  • Thanks for your reply Polaris. Yes, not agreeing anything genetic. But previous generations can be a warning genetic or not.

    My mum was dying of malnutrition in hosp, prev had done coeliac (Marsh endoscopy test - then only ) so had ruled out gluten issues.

    How many feet of intestines 22' or some such, and they think that they can locate antibody attack damage with a small endoscopy camera - crazy

    Eventually found my mum coeliac when enough damage.

    Amazingly she recovered on a gluten free diet - for 24 yrs and then some charming consultant invited her back for an endoscopy and said no damage - you can eat gluten again. What the ... but mum had the white coat /stethoscope/truth sayer syndrome. Was told to look for symptoms for a few weeks - what symptoms - not digestive surely - had healed, so time needed for damage to create symptoms, but yes look for digestive symptoms.

    But gluten causing leaky gut usually quite instant. No one mentioned then bed ridden with headaches for 3 weeks at a time (later lesions observed on scans of brain - as dementia set in) Vertigo- unable to stand upright in a breeze, eventual loss of sequencing skills and scarring on pancreas - died of pancreatic cancer. No one had said gluten attacks the brain and every other organ possible.

    Buyer beware Leaky Gut caused by Gluten proteins in 'Everyone' is devastating. Your intestinal wall keeps healing, fastest growing cells in your body however break your tolerance and you have leaky gut - digestive problems or no digestive problems.

    Newly diagnosed with RArthritis 22yrs ago - I talked of intestinal permeability which I had read about - to my rheumatologist, head of dept and later a professor, She laughed, no such thing. Just as she was retiring 19yrs later she told me a professor in Gastroenterology in the same hospital had published papers on Intestinal permeability - she said to me (I had not mentioned for 19yrs), it really does exist, there is so much evidence apparently, you really should talk to the professor - he thinks just as you do.

    Any symptom/chronic condition could be caused by Leaky gut and consequent antibody production to any organ /tissue.

    60 gluten proteins, NHS even today with blood testing only test for 2. which leaves on average 70% false negatives

    In 2011 my B12 test v bottom of range 191. Was told normal by GP. Later when found could have printouts, discovered, and so supplemented having followed Dr Daniel Amen's work - need B12 up high.

    My Grandma had PA which led to Parkinsons and dementia. But my dad concerned re his mum's history, requested a B12 test and had injections from age 50 until his death at age 85, no dementia.

    So I don't eat any grains, in any products. I don't eat sugar or any dairy except Guernsey butter (bright yellow - herds grass fed )

    I eat for my microbiome, take no meds and hopefully herbs like inhaling or applying oregano oil means no antibiotics at present.

    However long history of antibiotics for cystitis from age 19yrs - contributor to RA. I have since learned better. Pity my GP never read any books when I trusted her, I read them how come she didn't.

    Now same fiasco all over again with B12 def symptoms.

    I appreciate others have posted, not all myelin, or peripherral nerve symptoms like burning mouth/hands etc caused by B12 but when other symptoms re heart and other systems involved - seems to point to B12 to me, because systems right across the body affected

  • Thank you for sharing your story lynne - I'm so so sorry about your mum's sufferings and empathise with the frustration you must be feeling with doctors' lack of holistic understanding over the years as well as diagnosis/treatment for B12.

    Interesting to know you too use herbs 🤗 Sourcing my own NDT, B12 for SI and sauerkraut, homeopathy, herbs, etc. has enabled me to stay away from the stress of visiting my surgery, where they were only intent on reducing thyroxine and prescribing drugs for BP or flu jabs. I'm so thankful for forums like this and the knowledge gained and shared that is so helpful.

    With your family history of PA/B12, it would seem you are indeed high risk too - best wishes for diagnosis and treatment.

  • Thanks Polaris, all my tests IF and Parietal cells negative. Homocysteine I had started requesting re an Alzheimers Trust info, yrs ago when realised from Dr Amen's work that indicative. My recent was 8 - didn't seem to bad as had been at 9.3 - not good.

    My GP won't request MA test as told by haemotology that only they can request. She had done a referral to but rejected as B12 levels in normal range, despite neuropathy symptoms. So ignoring their own guidelines.

    Nothing surprises me with NHS.

    My dad then living on own after mum died, caught a chest infection, family members had - so def going round. This cleared after couple of weeks, quicker than younger fam members. But he started to feel weak. Couldn't stand long,

    (Previously very very fit, played in bowling league, walked everywhere) He had to rest for over an hour following his morning shower before he could get breakfast. I only knew because when I went up, he said hadn't had luch as not long had breakfast and reason.

    Started to collapse when shopping in town, had to slide down a nearby wall or cling onto something. Had to pause and get breath.

    GP diagnosed Asthma!! never had asthma (QOF payments spring to mind - practice get paid for such preventative prescriptions, like antidepressants or Bp meds. includes med prescriptions for hundreds of conditions)

    He used inhaler as a placebo but no improvement/ became housebound as couldn't walk from one room to another without resting.

    Then followed a series mini strokes - as if that wasn't indicative, Neurology do at least refer to cardiology as so connected. However had to wait months for app.

    Cardiologist insistent heart fine!, I argued with him. I remembered the Govt TV adverts, 'can't do what you used to be ablet to do. Have difficulty breathing, walking up hills/stairs. Cardiologist was very put out, but agreed a monitor but said we would have to wait weeks/months for.

    My dad had a heart attack before app for the results of.

    That was 11 months after these symptoms started!

    How intensive care saved him as was uncoscious stone cold with all vital signs showing body shutting down and oxygen levels so low were unbelievable when in A&E.

    Turned out had bacterial infection around heart that was eating his heart mitral valve away and so when blood passed through, his red blood cells were being destroyed so progressively less oxygen as months went by. So obvious - yet GP diagnosed Asthma, even though on testing dad said he breathed worse into the bag following inhaler. But still prescribed.

    Our vet! explained to us, how bacteria migrate. So probably migration of bacteria to heart from the chest infection (had course of antibiotics at the time).

    Hosp got rid of infection and proclaimed strong enough to undergo heart valve repair op. But unfortunately after a succesfully claimed op. A doctor on the ward foll his first physio, mistakenly pierced his lung when trying to withdraw fluid from chest cavity. (fluid does collect foll such a major op) So his lungs filled with blood - back to intensive care. Where he contracted NORO virus as another patient had on there. This meant 3 weeks in bed in isolation. So ill. We were then told valve repair had failed. Because of 3 weeks inactivity. Body has to heal - no tissue/ heart can heal when body inactive. This was found out when NASA was studying effect of inactivity on human health re space flight programme in 1960's. 2 weeks and heart starts to deteriorate as they found in their healthy 20yr old students.

    Treatment for heart attack victims changed fom bed rest to suddenly a chair appearing at the side of the patients bedside and a nurse encouraging patient to get out of bed into chair at least asap.

    It's my opinion people need to know this and be knowledgeable so can look after own health.

    Post too long. So I won't go into NORO Virus and how it mutated from Rotavirus (an innocent sickness/d bug that even a tiny baby only needs fluids re dehydration risk) But Pharma created a vaccine - given at 8 old weeks. Now we have a mutated version Noro the scurge of all hospitals that there is no treatment for. :(

  • Polaris, if you can tolerate dairy. website chuckling goat (welsh farm) sell goats milk kefir (fermented)for probiotic restoration or variation for healthy microbiome. Can order 1 off 21 day supply, every so often. Or more often for people who have issues.

    Excellent reviews - £40+ but not much more than the best probiotic pills and much more effective :)

  • Hi Polaris

    I wrote on here five months ago after 18 months of symptoms, burning tongue, headaches, pins and needles in hands and feet, anxiety, IBS and gastritis and of late tinnitus.I too am 60 and GP's have done all the tests for bloods and each time my B12 and D was reducing. The last time B12 was 320. They say it's within range and gave me loading doses back in April but put it all down to stress.

    My life is virtually stress free!!

    I went to a natural doctor after that who taught me to self inject methocobalamin but said twice a week. I started to have a bit more energy and found my blurred vision wasn't happening quite so much. Looking at some guidelines they suggest injecting every other day and feel I may need this in order to heal. The extra sublingual B12 the doctor suggested does nothing. He has me on a gluten free diet and no sugar, low carbs as dysbiotic gut.

    I started kefir and sauerkraut too along with supplements he suggested but last few days my gastritis is back making me nauseous on waking and feeling generally ill which I had 18 months ago.

    He does agree with me that all the antibiotics for UTI's caused the B12 to be deficient.

    Any further advice would be appreciated and any doctors or specialists that you or anyone has used would be helpful. My husband is ready to take me to Harley street but I think any specialist will tell me my levels were ok as did my gastroenterologist who said I wouldn't get neurological symptoms until below 200!!!

    Before all this started I was a very healthy, fit person.

    Thank you for listening, it helps knowing others are going through similar.

  • Your symptoms do suggest B12 deficiency Sallielynne and, being neurological, would be better treated as BCSH (BNF) guidelines, 'every other day until no further improvement', especially as B12 levels had been reducing, you also suffer from gastritis, and the injections appear to have already helped blurred vision.

    Re. gastritis, I'm sorry symptoms have returned. H/pylori is usually th cause and mine was only revealed by a private endoscopy, following which I was treated with a course of high dose antibiotics, but H/pylori often returns, and, together with the build up of constant medication, will deplete B12.

    Many researchers, as you know, now believe 'leaky gut' is the root of autoimmune disease and might advise following a restricted diet for a few days in case you've had accidental exposure to gluten, or longer in order to repair the gut. I need to take sauerkraut with each meal to stave off digestive problems but it seems every one is different. Some people find relief with digestive enzymes (betaine HCI with pepsin) but my own gastric symptoms returned on taking these and I quickly stopped !

    L-Glutamine is another supplement that may help: selfhacked.com/blog/15-prov...

    I don't know if this might help convince your GP to do further tests and give more frequent injections :

    jem.rupress.org/content/198...

    "Autoimmune chronic gastritis (AIG) is an organ-specific inflammatory disease leading to gastric atrophy, hypochloridria, and eventually to pernicious anemia. AIG is characterized by lymphocytic infiltrates in the gastric mucosa and by destruction of parietal cells, resulting in mucosal atrophy (15). In most AIG patients, serum anti-parietal cell autoantibodies (PCAs) are detectable. "

  • Thank you for your reply. I get so scared that the damage done is irreversible.

    I have more methylcobalamin coming tomorrow and inject in my leg. I know I need to take a B complex too but am unsure how much or what is a good one. I try to keep my food healthy as possible but always urgency to go to the toilet.

    I go on holiday abroad on Saturday and am dreading it! I just feel so ill most of the time.

    I have a lot of food intolerances too! All caused by antibiotics and omeprazole from years of taking. I have taken l glutamine for the past year but not sure if it's done anything.

    I understand B6 shouldn't be taken above 50 mg as can cause neuropathy so I have been halving the tablet to make sure I am getting some.

    What B complex do you take? I try to keep my potassium food levels up as I know this can make you ill too.

    I may ask the private doctor if he can arrange tests for me but thought if injecting it will alter results.

  • Really hope you feel better before Saturday and able to relax and enjoy holiday Sallielynne....

    These are the B's I take

    amazon.co.uk/Innopure®-Vitamin-B-Complex-Contains-Vitamins/dp/B00PEQQRA2/ref=sr_1_2_a_it?ie=UTF8&qid=1501530610&sr=8-2&keywords=vitam+b+complex

  • Thank you Polaris.

    Have been doing a lot of reading Martin Hoopers book. He says to get the B12 in before taking Folate. Is this correct?

    I have been doing both. Maybe someone else on here may know.

  • "High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood." :

    gbhealthwatch.com/Nutri.

  • Do you still suffer from UTI's? I have sim symptoms and had UTI's for many many years from age 19yrs. Antibiotics/thrush syndrome every month. I have since found D Mannose and rub oregano oil over badder area at the slightest twinge and on base of spine and upwards. D mannose, sim to cranberry but much more potent stops bacteria clinging to bladder cell lining and so get washed out with urine. I take before and always after sex. Or any twinge noticed. I buy both from website Naturesupplies.co.uk. Very helpful site, can phone and ask for advice x

  • If you look at real studies of lots and lots of people you'll see that the majority (about 90%) have B12 serum levels below 500 with no symptoms of any type whatsoever. cambridge.org/core/services...

    That doesn't mean that you can't have symptoms with levels above 500. But it does mean that you can't say that symptoms are due to B12 deficiency just because they're below 500.

    Getting MMA and homocysteine tested will give a better idea.

  • Thanks - agree that MMA and homocysteine testing is necessary and have a call out to my doctor to request. My concern is that I also have low platet count (129) which my doctor is monitoring. Anemia and/or autoimmune disorder can cause this. I have all the classic symptoms of thrombocytopenia (low platets) and they've been decreasing. My B12 was 485 last year.

  • Hi, many of your symptoms could be due to your underactive thyroid. I wonder whether you are optimally medicated for it. Doctors will tell you that you are but chances are you won't be. Do you have recent blood tests available for it? You should join the thyroid uk forum here on health unlocked (regardless of whether you are based in the uk or not) as there are so many knowledgeable people who can offer you advice. I see lots of posts on there about tingling and numbness etc. My thyroid certainly causes me numbness when I'm under medicated. I also get dry mouth, vision problems, swollen tongue and fatigue, even with an in range TSH. Please post your question to the thyroid forum, i'm sure you'll get some great advice

  • I've asked my GP repeatedly to send me to an endocrinologist but she says that there's no need. Yes, My TSH is 3.7 as of June. T3 and T 4 levels are apparently within normal range T4Free was 16 and Free T3 was 3.6 in Aug 2016. Seeing a naturopath who pushed me to find out if I had Hashimotos which is different than having underactive thyroid b/c it's autoimmune disease. Thanks so much for your great advice and sharing your issues. Will post on the UK site.

  • Your TSH definitely sounds high but without ranges it's hard to know for sure. Ideally you want T4 and T3 to be near the top of their ranges. The thyroid uk forum members will no doubt ask for nutrient/mineral levels too as these need to be optimal to use your thyroid hormones fully. You will get great advice and no doubt lots of people in similar situations comment!

  • Thanks. TSH ranges here are 0.35 - 5 (mine is 3.07). T4 ranges are 12-22 (i'm 16) and T3 ranges are 2.6 - 5.7 (i'm 3.6) I just spoke with my Family Doctor and she said my thyroid condition has nothing to do with my current symptoms. That my thyroid is fine and will not refer me to an endocrinologist.

  • I guarantee the members of the thyroid forum will have something to say about what your doctor said! The TSH ranges are similar in most countries and the advice I've always read from any patient forum/website in any country is that it's recommended to have your TSH below 1 and for t3 and t4 to be in the upper half of the range which neither of yours are. What medication do you take for it?

  • I take synthroid .088 mg. I don't think it's enough. My doctor dismissed me today when I said I wanted to see an endocrinologist. She said that b/c I already have hashimoto, there's not much an endocrinologist would do differently.

  • Marz posted a very informative link on HU Thyroid forum this morning :

    healthunlocked.com/thyroidu...

    Seems it's not only B12 research that doctors don't read.....

  • Hi Polaris. Thanks for sending this. What a great article. Scary to hear that family physicians are so behind on thyroid and hashimoto's treatment. I just started reading How to Heal Hashimoto's by Marc Ryan. He has the disease and speaks to this very issue about doctors not treating the disease properly. What's concerning in article you sent is that the thyroid drives so many other systems in our bodies. The mistake doctors make is testing only TSH, ignoring symptoms when tsh is in range and ignoring other systems of the body. The other mistake is believing supplementing T4 is only thing that matters.

    I'm definitely joining thyroid U.K. Site as I believe my b12 deficiency symptoms are related. Thanks again for suggesting this.

  • I have Marc Ryan's book, 'Roadmap to Remission'. He has a Facebook page and his post there a year or so ago on autoimmune/'leaky gut' and 'the little brushes (microvilli) lining the digestive system, that absorb B12 and other nutrients, was a 'lightbulb' moment 🤗

  • Wow thanks again. I will check marc's Facebook page and his other book. Thanks for sharing the B12 lightbulb moment. 😊 I am going to take 2000mcg b12 And then see what my results for mma and homocysteine are. I suspect that I'm not absorbing nutrients. So very helpful!!!

  • You'll find it at the bottom of the page here: 🙂

    healthunlocked.com/pasoc/po...

    Good luck in your quest for better treatment. If all else fails, there is always the option of self injecting with lots of help on the forum.

  • Hi Polaris, Great link! Really helps me see the bigger picture in all of this. hoping the other B12 markers show deficiency this week. And I will look into self injections if all else fails.

    Can't thank you enough!

    Wishing you the very best as well! Will keep you posted.

  • As i read your symptoms my intial thought was zinc.

    Poor wound healing, rash (zinc effects skin) mouth soreness, fatigue.

    en.m.wikipedia.org/wiki/Zin...

    Zinc deficiency Also effects thyroid

    hypothyroidmom.com/10-nutri...

    This is not to say you dont have a b12 deficiency. Additionally this does not address all of your listed symptoms. I just thought you might consider looking into this mineral.

    I hope you feel better soon.

  • Also if you take high dose calcium, it could be taking all the available receptors for minerals. High does calcium should be taken separate from any suppliments, such as mulitvitamin that is giving you your other minersls, magnesium, potassium, zinc, ect.

    consumerlab.com/m/answers/W...

  • Thanks this is good to know. I take my calcium in the evening along with Vit D, Magnesium and my estrace/estradiol HRT

  • What about K2 - need K2 see Chris Masterjohn researcher. Has a K2 Resource. Finf info on his fbk page of google Dr Masterjohn K2 resource. you tube lectures Kate Rheaume Bleue on K2. author of book 'K2 and the calcium paradox, a little known vitamin that could save your life' Have you studied and really know, you need calcium?

    Calcium from plants not rock too

    I take Ocean's Alive (marine phytoplankton) for full mineral spectrum, all work in synergy. Bottom of the food chain providing all the essentials for life. Functional docs take too, so good recommendation enough for me :) Google Wellness Mama Oceans Alive :)

  • Hi Lynne, I don't know K2 but I'm seeing my naturopath doctor next week and will ask her. Thank you for sharing your wisdom on my low calcium.

    Best to you!

  • Thanks so much. Never thought of zinc. Great idea! My sister takes it religiously. I'm seeing a naturopath next week and will ask her.

  • Hi there, I am with Graves Disease, post rai, now underactive thyroid - I recognise your symptoms of burning mouth, fatigue, little red spots-mine down my shins, plus brain fog and internal shakiness - am not medical qualified - am on learning curve - thyroid uk being my mentor was diagnosed with low ferritin and that started my journey of getting well - at 21 my ferritin wasn't considered so bad - but, for me, it was dire - normal and within range are not acceptable terms to use for people with autoimmune - get vitamins and minerals checked out, privately if your doctor is with deaf ears - thyroid uk will put you on the right track -

    Good luck on your journey

  • Thank you. I'm sorry to hear that you also suffer. About 5 years ago I had very very low ferritin iron of 12 and was told to go on supplements which I did and my levels are now back within range but wonder if they're adequate? On June 8 they were 99. Range is 12-223 in canada. My calcium is borderline low at 2.24 and was 2.18 last month. Range is 2.2-2.65. I will get my vitamins and minerals checked and am planning on going to a private clinic I think it's time to change doctors.

    Thank you. Good luck to you as well.

  • Google Chris Kresser or Chris Masterjohn. Iron has its good and bad side. Ferritin should be below 100. CK advises probably optimal 65/75. Women not at as higher risk of heart attack because bleed so Ferritin kept low. After menopause it climbs as we add to storeage and don't lose unless donate blood. So why Post menopausal heart attack risk becomes same as men.

    Why blood donors on av live longer.

    Range is bonkers, as always.

  • Wow Lynn. Thank you. I don't know much about ferritin levels, so good to know this and I will google Chris Kesser.

  • Your post sounds so familiar, same type of symptoms Iv had but not been diagnosed with thyroid problems. After about 7 years of b12 and other tests finally my results came back and I was diagnosed b12, vit d deficiency then with PA. I'm on my jabs and tabs for close to a yr but still feeling yuk. Wish docs would believe us and our symptoms instead of brushing us off.

    I really hope they start listening to you and you start to feel bit better

  • So sorry to hear. I hope that you start feeling better soon. I'm going today to get mma levels tested. I'm almost afraid to ask her to add on hcysp test as well but I understand both are good follow up screening tests for B12 deficiency. But it's my health and I'm insisting!

  • Good luck to you and hope you start feeling better soon!

  • Hi - had a quick look through the replies and haven't seen anyone mention hypoparathyroidism - sorry if I've missed it. This can lead to tingling and spasms. One of the tests is low calcium. Might be worth getting tested properly for it.

    nhs.uk/Conditions/hypoparat...

  • Hi Laura, thanks for sharing. Very relevant article. My father sadly was misdiagnosed for years, and passed away from hypercalcemia caused by a benign parathyroid tumour. IT was very unfortunate because he ended up with all of those horrible symptoms in the end and he was correctly diagnosed a week before he passed away when he was in the hospital. Then it was too late to operate. So I asked my doctor to test me for parathyroid hormone and she has refused. I thought I might have hypo parathyroid actually. My calcium levels were a bit low but new results yesterday showed they were within range again. I am waiting to get results for b12 markers. I have hashimoto hypothyroidism actually, and wonder if all of this madness doesn't stem from this autoimmune issue.

    Thanks.

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