I was all ready to start self injecting B12 having done much research and received helpful advice on here, received supplies and got my first jab done at a clinic. I doubted my GP would consider injections as my total serum B12 was 747ng/L (200-900) 3 months ago so decided to go this alone.
Very low ferritin 8ug/L (30-250) and anaemia was found at the same blood test which I've been addressing and levels are slowly raising but still not in range for ferritin.
I have been supplementing B12 for years as I'm vegan and don't get any from food. Because of supplementing I understand this test result is not very informative of cellular level activity. I did then do a private active B12 test, which I stopped supplements for 3 weeks before, which again was normal at 95 pmol/L (37.5-188). I can't afford to do MMA, homocysteine etc.
Today I had an appointment with my GP to specifically talk about my neuro symptoms as the last one was specifically to talk about iron and HRT review and not anything else. She did a very brief neuro exam and then talked about mood disorders, talking therapies and anti-depressants (already take anti-depressants). She did agree to refer me to neurology but said the wait was at least 18 months and that they would probably not find anything specific and diagnose me with Functional Neurological Disorder. I only just about function but my goodness it's a struggle!
I thought I'd just make the suggestion that maybe B12 injections might help my neuro symptoms. She said absolutely no way as my levels were top of the range so definitely showed I was absorbing my supplement. They only suggest when levels are under 200. When I mentioned self injecting she said it was not a good idea as my levels were already towards the top of the range. She disputed that serum B12 is not reliable because if it was an absorption issue my levels would be low. She would not go by my symptoms alone and to be honest the appointment time had run out and she obviously was keen to move on so I never got a chance to talk about NICE guidance. I get this, there is not enough time to see someone and have a lengthy discussion.
Now I'm doubting everything. If I self-inject I go against my doctors advice. But now I'm scared that if my symptoms have nothing to do with a B12 deficiency, if I start self injecting EOD as recommended with neuro symptoms, that I might be over doing it. Maybe this is in fact a mood disorder or FND? Maybe this is a low iron problem? - I've been iron deficient all my life it seems looking at my history since childhood. Maybe it's a vestibular problem - still waiting to see ENT.
1. Can you overdose B12 in injections if you really don't need any more? Could I harm myself?
2. If I follow this SI EOD path how will I know how long to keep going for? It seems everyone is different but many on this forum I read are SI who have a known proven deficiency. I do not.
3. Has anyone started SI and seen benefit despite having 'normal' levels in tests?
Attached is the list of symptoms I went to the doctor with.
Thank you and grateful for any help and advice
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Bertiepuss
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Hi Nackapan, thank you for your reply. Yes, just dropped off a urine sample to check for protein. She wouldn't do any other tests like MMA as that's secondary care and that my B12 levels are already high means I would not be looked at in secondary care anyway.
I am taking prescription iron to address the terribly low ferritin levels and I just had results to show it's risen from 8ug/L to 29 - still way too low I know so will keep going.
This is already another GP from changing from the last one that ignored my persistently low levels of ferritin over 5 years. I'm am realising we have to take the matter of health into our own hands and cannot rely on our doctors.
Vitamin D 138 nmol/L (50-250) - pretty good, I supplement
Folate 18.9 ug/L (3-20.5) - pretty good, I supplement
Thyroid - I did a Medichecks test as GP only does TSH as you know.
TSH 1.75 (0.27-4.5)
FT4 15 (12-22)
FT3 3.7 (3.1-6.8)
A kind person in Thyroid UK pointed out that although they all sit in the 'normal' range that FT4/3 were both quite low and that TSH should really be higher for those lower values. I plan to test again in a few weeks.
Good to know there is not a risk of overdosing B12 injections, thank you for confirming.
Nackapan is right - if urine sweet-smelling , I'd be thinking of possibility of blood sugar level being in need of testing.
It is always possible that more than one thing is going on, especially if you already have one autoimmune condition. So difficult to disentangle symptoms if more than one existing.
Regarding MMA testing as exclusive to secondary care:
MMA testing (methylmalonic acid) is a test that GPs are going to need to access if the NICE guidelines as read in the draft are agreed - hopefully early next year. Meanwhile, it certainly IS possible for an MMA test to be requested at primary care level. Not easy, just possible. It takes persistence, experience and tenacity - a GP who understands why the test is important and what it might reveal for a patient. So it may involve a few refusals - I think larger main hospitals more amenable as they are more likely to have the equipment to carry out the test - which may be why my own determined GP managed at third attempt. The MMA result was "raised" - despite frequent B12 injections. After other possibilities eliminated, functional B12 deficiency was diagnosed and confirmed by the testing laboratory.
I later was referred to a haematologist - and over time was given a further 4 MMA tests - results always "raised" (again, despite frequent B12 injections).
Then much later a final one (6th) was done by the DNA specialists in the Adult Inherited Metabolic Diseases department. After 3 years of frequent B12 injections, it had dropped into mid-range.
Two main conditions that need to be eliminated as causes for raised/high MMA:
renal problems - which can be tested for by a simple blood test
small intestine bacterial overgrowth (SIBO) - which needs a fasting breath test series over 3 or 4 hours to rule in/out
Why the test is important and what it might reveal for a patient:
Normally, MMA links up with B12 in the bloodstream to transport the B12 to where it is needed: cells, tissues. So a B12 deficiency that is being addressed means that the MMA build-up in the bloodstream should then attach to the injected B12 - and move on to address the issues at cells and tissues. In other words, symptoms should improve, and bloods would show a normal MMA level in serum testing. Certainly by the time that the loading dose series is completed.
In functional B12 deficiency, the introduced B12 does not form a link with the awaiting MMA in bloodstream - so both the B12 and MMA will remain high in serum testing. If only the B12 is tested, then it would appear that the problem has been dealt with by the loading injections. At this juncture, unless it is noticed that the patient remains unresponsive to the usual treatment, and unless the GP knows enough to request an MMA test, the patient will continue to deteriorate.
I was lucky to have a knowledgeable GP.
Primary care-level MMA testing, as being a fairly reliable secondary testing opportunity for borderline serum B12 results in patients presenting with recognisable B12 deficiency symptoms, must become more available for GPs. Otherwise it would be an increasingly long wait for secondary care consultants to rectify such deterioration.
If DNA reveals an inherited flaw in the transportation system, the answer would be two injections a week - this would be for life. I believe that there are yet more inherited flaws in this complex system to be discovered and treated.
Thanks for this, all quite complicated and I've had to re-read several times to try to get my head round it. I do believe in my case more than one thing is going on. For sure, my probably lifelong iron deficiency has taken a least some toll on my body, how would it not. I had iron injections at age 2. I recently asked for all my historic blood tests and found one from age 7 that the GP had hand written on 'mild early iron deficiency anemia'...it was never followed up with my Mother and I didn't receive any treatment. As to whether a possible B12 deficiency exists and if this is a contributing factor is more difficult to say. I guess time will tell with SI.
It's interesting to hear how your MMA results progressed. Did you start with a high serum B12 as well as high MMA?
No. Bertiepuss - my B12 was at 196 ng/L with a local normal range lower limit of 197 ng/L. Lucky. Yes - but by that time, I was holding onto the bus-stop sign, just to be able to get into work (and all downhill from then on, especially if it was necessary to stand up on the bus, stand up on the tube etc). I knew something was seriously awry, but not what. It was more serious than my B12 serum result would have indicated and worsened considerably even when my B12 serum level was above measurable range (over 2000 ng/L).
My MMA results were above range in the "raised" category and despite frequent (2 per week) B12 injections being administered, this remained the case for three years. So no gradual change. Just like the folate and ferritin levels, quite difficult to stabilise, but never sufficiently dramatic to cause much concern.
My GP thought that raised MMA was rare: she had had only two cases in her 20+ years of practice (the other patient also had functional B12 deficiency 10 years previously) - so rare enough for her to remember the MMA test required from a decade back. Adult Inherited Metabolic Diseases department (DNA testing) are more used to seeing patients with very raised ("high") MMA - but unlikely to have often (if ever) seen a patient that is already regularly receiving B12 injections twice a week.
In fact, the consultants told me that, should an inherited cause for functional B12 deficiency be discovered in a patient's DNA, the treatment advice to their GP would be twice-weekly injections. They told me that, dishearteningly, patients would return to them due to GP/ surgery's refusal to administer injections at this frequency - causing the poor patient to deteriorate further.
If your body does not contain the tools to take B12 to cells or tissues, deterioration at this level will continue. An observant experienced GP would recognise where B12 injections are not having the usual effect. Luckily for me, I had such a GP.
Luckily also, this particular condition is considered rare.
So, in your case there was clearly a functional B12 deficiency due to continued raised MMA despite injections. Have your symptoms finally resolved/improved?
Is there a particular genetic test to discover if there is a problem with the transportation system?
In my case, barring in mind my GP will not entertain any further tests as I have a high serum level and not a borderline one. If symptoms persist after I start SI, I could test MMA privately. If MMA is high then it points to a functional deficiency. If low then I know the B12 is getting to the right place. Have I understood this correctly?
Yes a high MMA could indicate functional B12 deficiency. But there are other conditions to rule out - renal problems (just a blood test) and small intestine bacterial overgrowth (SIBO) - which involves a fasting breath test series over 3-4 hours. I would imagine this last to be expensive - but important as SIBO bacteria rob you of more vitamins than just B12, and can be difficult to get rid of them.
I did eventually get to have genetic testing for hereditary MMA malfunction - but nothing was found and by then my raised MMA was finally down to mid-range. They apologised to me for not finding anything to explain my condition. Lovely people who advised me to join PAS for support (!) and knew all about the research trials that Martyn Hooper was involved with. I think it unlikely that it is possible yet to locate all possible B12 transportation flaws via genetic testing - but believe that there must be several.
All of these tests were via NHS and over several years.
My immediate family have Grave's disease, psoriasis, vitiligo and B12 deficiency etc, so still possible that this is somehow an hereditary overactive autoimmune reaction. I think my younger cousin even had a Schilling test - so gets B12 injections every 8 weeks for PA. I've had 3 IFab tests now- all negative.
If your MMA starts at a high point, then drops rapidly after loading B12 injections, this would indicate that lack of/low B12 was causing a logjam of MMA. The fact that it clears rapidly would be a good sign that the correct links are being made !
Ok, thanks for all the info, interesting to read! I have no gastro symptoms (unless I eat gluten regularly, so I don't) so could probably rule out SIBO. Renal tests were fine 3 months ago. Haven't got a baseline MMA and too late now as I've done my first injection! I think I will test MMA in a few weeks, if it's low then I assume I can at least say the B12 is getting to where it needs to get, does that sound about right?
Hey Cherylclaire, is functional b12 def very different than PA? In Canada and doctors here never test properly. Always assumed I have PA as my dad has it and it runs in his family. My doctors assistant accidentally put in a referral to the wrong specialist but I was accepted and it’s a Geneticist. Wondering if they would test me properly? The haematologist in 2011 told me “clearly my b12 def has cleared up”. Clearly it hasn’t and you can’t try to explain the serum b12 test is useless because of their egos. It would be nice to know for sure what I have.
Pity you missed the Medichecks sale because all tests had 25% off, taking the MMA down to about £75. I know, still expensive but worth it in that it might fast track things for you and in the long run save money (NHS will be required to prescribe injections) and a lot of time
Thyroid UK has a host of discount codes all year round - none as generous as 25% - and Medichecks discount their products on a regular basis, so maybe sign up to get notified
Yes, I was aware they do regular offers so will keep a look out, thank you for reminding me, I will sign up to get notified!
I was under the impression MMA would not be that accurate if you have been supplementing so had sort of ruled out spending the money. I felt it risky to stop supplementing (recommended 4 months apparently) seeing as I don't get any B12 from animal products. Plus, as I would naturally become deficient from the dietary lack, the tests without supplementing would still not tell me if I was absorbing the supplement or not. Although I guess is MMA was high then it would should there was a problem as in your husbands case, he had high levels of serum B12 yet also high MMA too but I guess he is getting B12 from meat rather than supplements? My mind boggles over how these tests work and what they prove/not prove...
I guess self injecting is the way to go to see if symptoms improves, that's the real test. And the kind people replying here have given me some reassurance that no harm can be done in regards to overdosing.
I think you need an iron infusion, many of your symptoms will be linked to that- without adequate iron (and folate etc) the b12 won’t be able to work properly. Will take time to get better even following that, I’m 10 months post treatment now and a lot better but still left with some brain fog due to the amount of time I’d been low in iron without realising.
Hi Loupharm, thanks for your reply. I was refused an infusion and told only could have if my levels didn't come up with tablets - as they are beginning to rise I think I will have to just keep going with them. Good to hear you are feeling a lot better, I hope you see continued improvements. It gives me hope that I need to be patient. It's only been 2 months on high dose iron so I guess I just have a long way to go. Hopefully adding B12 will make the whole system function in a better way.
Did you have an iron infusion? How do you address B12?
If budget allows, many on the thyroid forum are raving about 3 arrows iron repair. It seems to raise levels quickly so I’ve just bought some for my husband who, like you has ferritin in his boots and his recent MMA test was positive too, despite high serum levels. Had to buy the test ourselves and when we showed it to GP she readily admitted she couldn’t help and referred him on to a specialist
Previously, my ferritin was low and no matter what I took it didn’t move much. Metabolics ionic liquid iron did the trick very quickly and in fact ferritin went over range. I have to confess I did my own thing with it and ignored the instructions because it was a ridiculously low recommended dose
Because the 3 Arrows is made from bovine spleen, the manufacturer says we don’t have to wait hours to ingest any other supps we may be taking which for husband is very useful, he’s taking many and so spacing everything out over this course of the day is an inconvenient nuisance
Interesting to hear about your husband's result of high serum and high MMA. I have kind of given up on testing MMA and trying to fight the GP - I just have no emotional reserve left and every time I leave the GP I feel more despondent.
Being vegan, I just can't face taking heme iron but I do realise it would be far easy. I will continue with the ferrous fumarate, it's not causing issues and my levels are starting to rise. I'm just about managing with the spacing required with other supplements but need a spreadsheet to manage it and reminders set to ping! I did actually look at the Metabolics ionic iron yesterday before reading your reply this morning. I think it would cost me an awful lot to take the high does I need! Good to hear it raised your levels though.
Has your husband got anywhere with his referral or are you going it alone? I'm guessing he is not feeling very well?
Like I said, we bought our own test and when we showed her she was unable to interpret it
Husband looks and feels very well. It’s remarkable but clearly, internally things are haywire
I can hear in your choice of words that you’re in bad shape emotionally and that must be very hard. Fighting the battle takes its toll. I’m so sorry. My husband is lucky in that it’s me who pushes for help. He’s very laid back and sometimes I get a little angry at his lack of involvement. Thanks to me our GP referred him immediately and husband has been sent blood test forms to complete as soon as
I have Hashimoto’s disease and because of the thyroid forum I now know the ropes and have tried and tested many supplements
The ionic iron is available in 500mls and at 5 drops/day (65mg) that would last 142 days at a cost of less than 3p/day. If you needed to take more, say 130mg, it’d cost about 5.5p/day but I do understand that what with all the recommended supplements, it gets costly
My husband was given ferrous fumarate 200mg but if I understood correctly, each tablet has quite a bit less than 200mg of actual iron. To be sure of that statement though, I’d have to check with humanbean - or was it helvella - over on the the thyroid forum
I'm glad your husband is feeling ok, that's positive, but good to not just ignore abnormal results. My husband is the same - basically he hates the doctors so it's me that persuades him to do tests and take supplements. He is onboard with the B12 as he actually had an active B12 test come back borderline despite supplementing. Good job they have us advocating for them too!
You are correct, the 210mg ferrous fumarate from the GP contains 65mg elemental iron. Just had another look at the Ionic Iron. It says 10 drops is 13mg. I take 130mg of elemental iron so would need 100 drops per day meaning 100ml provides 14 servings (days). So 500ml (£35.24) would last me 10 weeks. It would work out at £0.50 per day which is not terrible but yes, with all the other supplements it adds up. At least it doesn't have the strange additives the NHS one has! I will keep this one on the back burner but thank you for bringing it to my attention as an option.
You said you went over range, did you find you felt better with higher levels of ferritin and this in turn helped your thyroid to function better?
Yes, for now! I’m really hoping that this next labs show significant progress in the ferritin dept
he actually had an active B12 test come back borderline despite supplementing
Is he taking a quality supplement or is something else going on
It is a good job they have us advocating for them but sometimes I feel it affects my enjoyment of life. It’s exhausting but not his fault I suppose that he doesn’t care about this as much as I do but I think that’s partly because he doesn’t have the inclination to understand how the body works and what it needs to enable it to work. Exhausting and frustrating …
Right, so sorry about the miscalculation. For some reason I had hold of the idea that one drop = 13mg. I’m dangerous (😳) well done for checking
Yes, the NHS one is a terror for constipation but not for everyone
Re my over range ferritin, it took about six weeks on the erratic doses of Metabolics to take me over and at the time I was also finishing off a tub of Thorne iron bisglycinate so not sure at which point it rose so high but it wasn’t till some weeks later that I noticed feelimg better. I had more energy and motivation and was more positive. How it affected my thyroid function is hard to say because my thyroid replacement was taking care of that but I suppose it must’ve in some way contributed to the efficacy of it
NB I should add that it’s a very bad idea to over supplement iron and that being over range can be dangerous AND it took a while to lower. Not the same for everyone but be aware of those possibilities
Yes, I've done a lot of research now on iron supplementation so aware of the dangers. I'm monitoring with a full iron panel (at my cost of course) every 4-6 weeks to make sure nothing untoward is happening. I know for some it can take many months to raise ferritin levels yet for others it comes up more quickly.
Wondering if your quickly raised ferritin levels were due to anything else? 6 weeks is really fast, were you very low to start with? It's taken me 6 weeks of 130mg per day to go from 8ug/L to 29. Did you monitor your inflammation levels?
Interestingly, my husband, we eat the same wholefoods vegan diet, has good ferritin levels of 104ug/L. He does have vitiligo and subclinical Hashimotos (slightly raised anti-bodies and a nodule, but not abnormal thyroid hormones) both started before becoming vegan so can't blame the diet for those. I wouldn't be surprised if there is some kind of malabsorption problem as there has clearly been an autoimmune issue for a long time and he doesn't react well to gluten.
He was also thinking to self inject B12 with me. Won't go to the GP with his borderline active B12 results despite me saying he should, he is quite terrified of them. His symptoms are nothing like mine, he's still able to work full-time, but he doesn't feel brilliant so hoping for improvements too. He relies on me to tell him what to do regarding health. As you say, somewhat exhausting as I have my own problems to deal with.
No worries about the miscalculation on the iron! Until you mentioned the Metabolics one to me I'd previously discounted it as I'd miscalculated (added it up in my head) it costing £1.50 per day and not 50p! So, much cheaper than I'd originally realised, thank you for putting it on my radar again!
Not at all, always so glad to give something back. I’ve had so much help that it’s good to be able to pass it on but you sound on it with regard to knowledge. Your husband is fortunate
His thyroid panel,, did you post it on the thyroid forum for help and did it include FT3. , You’d be right in suggesting he might have a malabsorption problem, hypothyroidism and low stomach acid seem to be joined at the hip. As a consequence, many of us - if not most - have low nutrient levels and can struggle to raise them. This is often compounded by GPs prescribing PPIs. Gluten is frequently a problem too and SlowDragon on the thyroid forum is a strong advocate of GF. I was in denial for a long time because we have a quality baker here and I love French bread but I have to reluctantly admit I do so much better without it and when I relapse, and I often do, the consequences aren’t pretty
My level of ferritin was low but not as extreme as my husband’s. I think the synergistic effect of my thyroid replacement and supplements contributed to the quick rise in ferritin. Also weekly liver. I was so shocked when the report came and worried. Stopped the iron immediately but it’s taking an age to lower. Inflammation levels are good, at least according to CRP marker
No, didn't post his, only my own. But the replies I got about my own I applied to his. His thyroid, despite slightly raised antibodies and a nodule is working at a better rate than mine, in fact his levels are exactly where they should be for a healthy thyroid!
Good that your CRP is ok. Mine looks to be rising a little as the ferritin begins to rise. Am keeping an eye on that. Thanks for all your help, so grateful to have these forums 😊
Welcome here. Sorry to read you are feeling lost and scared. Sending a big hug.
Functional Neurological Disorder can be a misdiagnosis for Pernicious Anaemia and B12 deficiency. No amount of Antidepressants nor CBT can manage your signs and symptoms. It is the wrong management.
You are correct that we do not know what is happening at cellular level and we have 300 trillion cells.
Like Loupharm has written 8 mg/L for Ferritin is rubbish. Mine was 7 mg/L.
Basically, your body and brain are not getting enough oxygen nor nutrients. It is not a figment of your imagination, it is NOT symptoms arising because of stressful situations. You are physically sick.
We are here to support you. I would recommend that you have your first 1mg/ml Hydroxycobalamin intramuscular injection by a Health Professional because of the small risk of anaphylaxis.
Dieticians are the specialists in Biochemistry. So, ask your GP to refer you.
Like Nackapan has written Hydroxycobalamin is non toxic as it is water soluble. This means the kidneys do their work and excrete out in urine.
Many of us take a multivitamin and mineral. However, a discussion with a dietician personalises your Care and Treatment. We are all very different with height, weight, age, metabolism, other diseases, intolerances, operations and medication.
Hi Narwhal10, thank you for your encouraging and empathetic words, it's good to be able to receive support from others who have been through similar experiences. I think because I've been medically gaslighted for so long, it has left me with a mistrust of those I should be able to rely on. I have just found a blood test at age 7 (I requested my whole medical history) where the doctor had hand written on it 'early iron deficiency anaemia'...and never bothered to tell my Mother. My Mother said at age 2 I was iron deficient and had to have injections so it seems this iron deficiency has probably plagued me all my life - probably my own fault as I was a very fussy eater until my mid 20's.
I'm guessing you were you also feeling pretty rotten with ferritin at 7ug/L?
I had my first B12 injection 2 weeks ago at a private clinic so no problem with anaphylaxis. I was all ready to start my loading doses at home, I have all my supplies ready, and then the appointment with the GP yesterday just totally threw me. Because my symptoms fluctuate to some extent and some of them have been around for many years, I began to doubt this is a B12 issue at all.
Clearly I have an iron deficiency which will be a slow process to improve but it sounds as though injecting with B12 will not do any harm even if there is in fact no deficiency. And hopefully it might help. Thank you for your reassurance, it's very much appreciated.
Fab about having Hydroxycobalamin at Private clinic. I use the proper terminology because medics wrongly think it ONLY a vitamin. It is actually a portmanteau of VITALE amine.
I am off for a nap but back later or tomorrow. Please know that this screams at me,
‘probably my own fault as I was a very fussy eater until my mid 20's.’
As a child, I would silently cry when we had lamb for dinner. Any offal, the smell made me feel sick. I used to hide in my bedroom when the chip pan was put on. Going strawberry picking, I would pick them and stamp on them. Mint is hideous. Every weekend my older sister and I would stay at my grandparents. My mother would ring my Grandmother and tell her off because She had overfed me. She had not, I just had a very bad stomach. The cure was Andrew’s Liver Salts, I would vomit and go to bed.
This year age 50, I was finally diagnosed with Coeliac Disease. You are naturally disliking food that will cause you harm. It should never be underestimated. Severe intolerances and intolerances are real. Pregnant women have food cravings. If you look at the type of food, you can work out what they are deficient in whilst they are growing a new life.
What a hideous experience you went through at your Grandmothers, just horrible! I apparently would not eat any form of meat right from weaning and my first memories of food are having a 50p piece of meat on my plate at dinner and having to somehow chew it up and swallow before I was allowed to have dessert or leave the table.
The smell of it cooking and knowing what was coming left me with anxiety around meal times. I would hide it in my cheeks like a hamster, popping to the toilet to be rid, or sticking the little chewed up balls under the sofa when an opportune moment arrived. Eventually I was no longer 'forced' to have it as I ruined Sunday lunch every week. The trouble was I didn't eat vegetables other than potato either so I'm sure my deficiency's were diet related at that point. I have no idea why I was so fussy. Although I'm vegan, thankfully I now eat a rainbow of colours, but I guess damage was done as a child and I certainly was not a healthy one with many chronic illnesses.
I would totally recommend that you have intolerance testing. I have a 47 page report of the foods, grasses and E numbers that I react to, some are severe. I know some people cannot eat meat just as you describe. It is not a fad or you being awkward. Though no time to investigate further. Technoid is knowledgable. Although, this is from educated guesses, it could be :-
1) your gut microbiome (so, we have good and neutral organisms in the small intestine),
2) it could be a genetic factor. (I have the HLA DQ2,5 gene which is high risk for Coeliac).
3) People can lack a particular enzyme (a protein).
A combination of the above or something I have yet to learn.
It is complex but please do not blame yourself. Nobody asks for an illness. We ask for help and to be listened to.
I am severely intolerant to lamb. So, here is a link to Allergy U.K. :-
Thanks Narwhal10 for all the links, I will have a look at all the info over the coming days. I've just done a 23andMe genetic test. Guess this will reveal if I have copies of the coeliac gene and hoping it may reveal more useful information about metabolism. The body is a complicated thing!
I didn't have a gut (poo!) test through a nutritionist which revealed and fat and carbohydrate malabsorption and also high toxin exposure. I also had a mould problem in my current home (now address) and lived in a mouldy bedroom as a child. I've had some many tests over the years revealing a host of sub optimal results and taken a whole pile of supplements that have not had any major positive effect. I just don't know if these tesst actually prove anything and truly relate to symptoms. I wouldn't be surprised if most of the population who regard themselves as healthy would get some form of subpar results yet they don't have symptoms...all mind boggling!
Thank you for your kind words though, I do appreciate it.
I read your Bio, you deal with a lot! I'm wondering how are now feeling, hopefully better than you did?
Since you already had the first B12 injection there are no other significant concerns with B12 injection other than following good hygiene and safety protocols if self-injecting. It is fairly common for doctors to dismiss the possibility of an issue with B12 based on serum results but this is not professional as the result is not reliable enough to make this decision as many experts in the diagnosis and treatment of B12 deficiency agree.
B12 has no demonstrated toxicity at any dosage so a "tolerable upper limit" has never been set. Elevated B12 levels as a result of injections or high dose supplements are not of any clinical concern. If you doubt this, you can ask your doctor to provide the evidence of why they would be. I can tell you nothing will be provided because no such evidence exists.
I noted you are vegan so you may find some other helpful stuff on vegan nutrition in my bio profile.
Iron dosing may work better on alternate days to avoid overloading the system - too much can result in a reaction which blocks iron absorption, leaving you spinning your wheels the harder you put the iron pedal to the floor.
Just read your bio Technoid, it's interesting to read your B12 journey also as a vegan and thank you, I will look at the links, some of them I am already familiar with but I'm sure there are many that I'm not.
As was fully vegetarian by age 8 when I was not forced to eat meat any longer. I was already iron deficient but didn't find out until recently. I ate fortified foods so probably got some B12 from them. It was not until my early 30's when I finally worked out nutrition might be a problem for me that I began supplementing B12, I did however take a lot more than the miniscule dose you were wrongly advised to take. I was already experiencing some neurological symptoms at that point but they have continued to worsen. And in my mid 20's acquired a permeant addiction to antidepressants to 'treat my symptoms'.
My Father was diagnosed coeliac about 15 years ago and I know gluten causes me IBS if eaten more than once a week. As a child I had chronic constipation, I didn't know any better as I don't remember ever going to the toilet in a normal way, I just thought everyone found the toilet a horrible experience. It wasn't until my Dad was diagnosed that I trialled reducing gluten and then I could actually go to the toilet more than once a week without bleeding and pain. I now avoid gluten completely so can't be tested as there is no way I could eat gluten every day for 6 weeks without major bowel consequences. It's possible I do have an absorption issue but can't be proven.
I'm following a specific protocol to raise my ferritin. It does require taking iron everyday with vitamin C supplementation, there are references from American Haematology that this often produces better results than taking EOD. We'll see, only time will tell if this approach works for me, if not then I will revisit the EOD approach.
Thank you for your reassurance regarding injecting, yours and the other kind comments on my post have reassured me to go ahead.
have you had your thyroid tested? If not do so asap B12 deficiency and Hypothyroidism are often. I should know ! GPs are often ignorant of the connection and it took another 2 years to get my issues diagnosed which weee very similar to yours……
Hi Libuse, thank you for sharing your experience. Interesting to hear about your thyroid experience, I'm sorry you had so many problems being diagnosed. GP tested TSH and said it was normal. I decided to do a private test to see T4 and T3 too. As I said to Nackapan above, the results looked to be ok but someone from the Thyroid UK forum said it wasn't quite such a rosy picture and to test a couple of times more over a few weeks to see if anything changes.
TSH 1.75 (0.27-4.5)
FT4 15 (12-22)
FT3 3.7 (3.1-6.8)
They pointed out that although they all sit in the 'normal' range that FT4/3 were both quite low in the range, and that TSH should really be higher for those lower values.
Were you able to get diagnosed through your GP? How do you address B12 and hypothyroidism? Are you feeling any better?
I have just at your results and feel D3 is a bit low too and should be approaching 200 as you are B12 deficiency. Easily remedied with tablets or drops. You can overdose with so follow dosage instructions.
When you have next thyroid test best early in morning having drunk nothing except water. Coffee or food will distort TSH levels.
I was diagnosed with B12 deficiency 2 and half years ago, given 6 loading doses and then 3 monthly injections. But I have neuropathy (numbness in hands and feet). Through the great people on this site, I realised I needed to self inject every day which I still do, not telling the GP. Then I told GP my feet and hands were freezing cold all the time even when hot. No connection with hypothyroidism made and it was only when I collapsed last December and completely lost my balance that I was sent for full blood test which revealed TSH of 67 which is ridiculously high. I am much better than I was but a long way to go yet. X
I’m brand new here & this is my first post. I hope it will be helpful.
If you have Pernicious Anemia, the first painful lesson you’ll learn is that doctors have very little training & knowledge about B12 deficiency & even less about PA. They usually only get about 30 minutes of B12 deficiency training in medical school. It took me 21 years to be diagnosed with PA !! I saw over a dozen Neurologists & they had no clue about B12 deficiency or Pernicious Anemia whatsoever !!
Lesson #2 is no physician will get you the amount of injections you need. Your blood work is meaningless anyway once you start injecting regularly. Methylcobalamin Injections are vastly superior to Cyanocobalamin !!! You cannot overdose on B12 injections. The excess is passed through your urine within hours. I’ve been self injecting daily for years as do most people who suffer from PA. The best advice I can give is to inject a little & often. I inject .3ML of Methylcobalamin daily. My physicians had me in injecting 1ML Cyanocobalamin every 21 days & It didn’t help much. I got smarter from experience & researching. I’m feeling so much better & have much more energy now !! My overall health has improved dramatically !!!
Lesson #3 - see Lesson #1 - Physicians will be of very little help treating PA. I cannot stress this fact enough. If you want good accurate information about Pernicious Anemia & how to treat it then go to the Pernicious Anemia Relief website at perniciousanemia.org This will answer all your questions & concerns backing everything up with the research for you to see.
Thank you for your reply and advice. It's awful it took you so long to get a diagnosis but glad to hear you have made so much improvement with SI, I gives me some hope! I've been trying to find the root of my problems for near 20 years. My diagnosis is depression, my treatment is antidepressants and CBT. Neither have helped the neuro symptoms. And despite my long standing iron deficiency, that I was not even told about until recently once I became anaemic, is apparently does not have any involvement according to the medical professionals I have seen over the years. Because my serum levels of B12 are high (I supplement) my GP says no way PA or absorption issue. I will start to SI, it's worth seeing if it helps.
First off, just take a deep breath, (if you can) and relax. I have PA. Doctors, forget them. According to what you have studied and listed in your post, you already know more than most doctors do about B12. Yes, that's right, you really do with no pun intended. Doctors have the ego thing going on along with a lack of vitamin B12 or other vitamins knowledge when they go through medical school. They are easily offended and a waste of your time. That being said, some people will still insist on seeing a doctor. I see them If I break a leg and maybe other things like a yearly physical, but of course they missed catching my slide into pernicious anemia for over 10 years until I did my own research and diagnosed myself as being PA. As for self-injecting, I'm lucky for now as my wife injects me and she has gotten good at it. If you are single I hear the thigh is good for self-injecting.
B12 Methylcobalamin ( 1 mg M,W and Friday for now) is what I use and I also take 1-2 mg of Methyl Folate/day. I am still working on just how much I need on each one and how often (it's a constant struggle to see how much each individual needs and how often).
You cannot take too much B12, if your system has too much you will simply pee it out. What kind of anemia is yours? The blood lab tests are not reliable. If you are over age 60 your blood lab levels should be over 1000 and if under 60 maybe 7-1000 may be acceptable, but it seems to vary.
Anyway, my lab blood levels showed my B12 level was 1645, so GP at the time said I did not need any B12 and that I had too much in fact. However, the lab blood tests only show how much B12 is circulating in your blood, so if you just had a B12 shot it will indicate that you have plenty in your system. I will stop now as I could go on for hours, but you'll get bored. Hope I explained everything ok, forgive me if I missed something. Do your own research and take plenty of B12 shots. Good luck. MJat
Thank you very much for your reply and for telling your story, it's really helpful to hear how other's have progressed and what they've learnt. I know everyone is different but it gives reassurance. I luckily have a husband who is willing to entertain the idea of injecting me!
I like others would definitely suggest a request for a full thyroid panel , and , very importantly the Diabetic HbA1c test , not just a glucose test to be done by the GP.The surgery should have considered the Diabetes test anyway with many of your symptoms , especially sweet smelling urine.
Parathyroid testing may also be important to request if thyroid tests are not considered significant.
It's better to request that the Thyroid Panel is now done by the GP , not just privately, you could show them you private test and point out the low end of the range , and the fact that many B12 and Folate Deficiency symptoms are common to thyroid problems.
To be frank , it can be helpful to push forward our attempts to get more GP help to have initial private test results by Medichecks and others but the doctors themselves will seldom make decisions , other than to retest , based on private lab work unless you paid for the privately funded NHS blood tests done by their affiliated labs.
So repeated private finger prick based blood tests can actually become an extremely expensive choice that doesn't end up getting you any further.
It's a problem that people with thyroid issues always experience.
As others have said , ask for Intrinsic Factor , PA antibodies test. Although not great, not everyone with B12 deficiency or PA will get a result on the test, you could discover that alongside mild thyroid imbalance you do have a significant intrinsic factor result , which would then make the GP begin to consider further treatment.....or at least stop pushing your symptoms into the "all in your head" category just because you haven't had abnormal results yet on basic blood tests.
It may be worthwhile getting these tests done, and possibly a private test for Active B12 before beginning to self inject. As others have said , B12 is one of the vitamins that you don't get toxicity or overdose problems with, the body keeps and stores what it requires to a certain level and the rest is processed and removed.
I am actually getting my B12 every 6-8 weeks now because of my neurological symptoms and coexisting pancreatic enzyme, cardiac and Dysautonomia conditions , although it took a lot of hoop jumping to get there. I am also advised to take daily sublingual Methylcobalamine.
I also have Folate deficiency issues and tested for the MTHFR gene mutation in recent NHS gene testing when they also discovered my pancreatic enzyme insufficiency so I get folate and iron infusion every 3-4 months as well as taking Methylfolate each day.
I also have to have Active iron ( iron Bisglycinate) because I do not process Ferrous Iron properly.
And I need daily Vitamin D which I get in spray form.
Unfortunately, it is even harder to get tested to see if your deficiency is a metabolic one or linked to enzyme insufficiency rather than the usual suspects.
One person you may be better off getting referred to us an NHS Dietitian, even though the waiting list may be long.
They can request your GP to do lots of the fecal and blood and breath tests that many Specialists don't even readily get done. They can also recommend supplement treatments to your GP and fast track referrals on your behalf to endocrinology, gastroenterology and the rest based on their findings as well as helping with other diet tests and food suggestions. It's definitely worth requesting a referral to them.
I assume you have the blood tests to rule out other more common digestive and liver function health problems that can also cause malabsorption or metabolic issues.
I hope you get the answers you need soon , take care , Bee
Thank you for your reply Blearyeyed. Yes, had a diabetic HbA1c test 2 months ago and as it was fine so it's not likely the problem. Am waiting on a urine test.
Interesting to learn of your journey, sounds like you have been through the mill too. It's exhausting. Because I have a diagnosis of depression and fibromyalgia I feel like whatever I go to the GP with, they automatically lump every symptom on to those diagnosis' despite new symptoms arising just in the last few months.
All the tests I've had the GP says are perfectly normal apart from the very low ferritin which has been below range for years and ignored until now. Finally it's been acknowledged as a problem because I had become anaemic. Before the GP said although low, all was fine as I was not anaemic until recently. I now know different and that iron deficiency without anaemia does cause symptoms.
So, my GP has referred me to Neurology and basically said she was signing me off as all other results showed no problems. I was offered more antidepressants and CBT. I am 'allowed' another iron test in 3 months time to check levels are rising. I actually do not have the emotional strength to go back and insist on more tests although maybe I can write to the GP and be asked to be referred to a dietician on account of me being vegan and iron deficient...
My active B12 was within range (95 with a range of 37.5-188) but I supplement so hard to say how accurate. Liver and kidney function look ok. Folate and Vit D are good, I also supplement them along with a pile of other vits/minerals.
How did you get a gene test and a pancreatic enzyme test on the NHS?
Despite my Dad being coeliac they will not test my genes despite being a first degree relative. They insisted I had to eat gluten for 6 weeks to do the coeliac test which I said there was no way I could do as it makes me too ill to consume that amount.
I think all I can do is start self injecting B12 and see what happens. At least several of you kind people have reassured me that I won't overdose even if in fact no deficiency exists. Hopefully I will improve, time will tell.
I also have Ehlers Danlos and Fibro it took years to get them properly confirmed with the repeated Anxiety gaslighting along the way.The genes test was done because we now have a good GP whom did the proper EDS tool kit classification in normal appointment time in the surgery. For once , someone didn't pass the buck and he arranged genetic testing to confirm if me and my daughter's had Classic EDS , during the extensive interviews my extensive digestive issues were discussed and the ongoing bouts of pancreatic symptoms I have each year . They decided to also do the pancreatic testing as I had just recently been diagnosed with B12 deficiency anaemia and Folate deficiency and had , had these recurring along with vitamin D deficiency for over a decade ( even though the B12 issue was originally misdiagnosed as malnutrition a decade earlier because I was so underweight and no action was taken , I have a copy of the original blood tests to prove that I actually had megaloblastic anaemia).
Just wondering were you very heavily supplementing with your Folate when you did your Folate test. Just like B12 testing it's better not to take the supplements for a few weeks before the test or the Folate and B12 supplements mask the deficiency, and Folate Deficiency causes the same issues as B12 or PA.
It may be worth stopping the supplement and waiting for the B12 and having a Folate test first.
Folate Deficiency also prevents proper absorption and metabolism of iron / Ferritin.
Unfortunately , as I've been saying for decades now , there is nothing that makes you feel more ill than trying to get well. Often , it's the experience with doctors and specialists whom are meant to help us get better that actually makes us feel the most sick. Invariably, most of us don't start with the Anxiety they try to blame everything on before we go through the medical system trying to get help for a less common chronic illness but because of the amount of delays and misdiagnosis we receive over the years Anxiety can eventually happen.
Now when doctors and specialists whom try to decide to bring out the Anxiety card after only checking for the most common conditions suggest it I say,
" I do not have physical symptoms because of Anxiety , but I am occasionally frustrated and am out under Stress because I have physical symptoms that haven't been diagnosed or treated yet , I hope you can understand there is a big difference between the two.'
It usually makes them open their file up again.
Truth is if you have Coeliac , which could definitely be causing these issues, you will need to eat the gluten and suffer the pain for a few weeks to get the positive result , or you could be a decade trying to convince them to do genetics testing you going through years of symptoms and pain instead. Genetic Tests are expensive, your pain , however , costs them nothing.
They only care about the cheapest way to get significant positive results it's all a matter of economy, to them your increased symptoms helps to give them clinical results they can rely on , they don't really see the patient having an extra month of non critical or life threatening symptoms as something that we shouldn't be willing to go through. Of course, they aren't the ones that have to punish themselves to get the results for treatment.
And you can't put the blame on your Primary GP , they have to follow the guidelines given to them by the local Trust and NICE , they have to do the first line treatments and basic tests first before they can access funding for anything else.
Even the laboratory will refuse to do certain blood tests even if the GP takes the blood and requests them unless there has been a big enough gap between similar tests or more basic diagnosis has ruled out the common problems first.
A bad GP refuses to do blood tests that NICE guidelines say you can have until you complain and show them you know the guidelines.
A good GP , however, does what they are allowed by NICE but then gets frustrated themselves because of the delays of getting you other tests quickly within the system.
I had five separate Coeliac tests , they were all negative , but with the first two they didn't tell me I had to eat gluten to get the positive result. The third was negative but after only three weeks of gluten. A few years later, and after my gall bladder was removed, as they are never willing to believe you have more than 5 most obvious conditions , they decided that I could still be Coeliac and did two more. Yes , it was painful and my daughter is going through it at the moment but it is necessary to do because Coeliac can cause all of these symptoms and Deficiencies .
It's also better to get your blood tests for Crohn's , Ulcerative colitis , Diverticulitis, Epstein Barr and Irritable Bowel Disease at the same time as the Coeliac test , and your ANA blood test and SLE Lupus tests too. They can't send you for further investigation until these are done and found negative but you obviously still have symptoms and some abnormal results.
The next step may mean a colonoscopy to confirm or rule things out.
With so many symptoms going on , and already having Fibro and your family medical history , B12 Deficiency or injections alone probably won't get to the heart of the matter although if you are Deficienct as well the B12 and Folates do improve the symptoms of other conditions alongside the treatment specific for them.
I guess you could always use the Christmas period as an ideal chance to indulge in gluten , at least the food will feel like a bit of a treat going in , even though it won't going out. Then you could continue the gluten into the first week's of January and book the test with the GP. It will probably make them more willing to be help with the problem if they've been able to rule Coeliac and other digestive problems out properly and will get you a quicker appointment for your Dietitian referral.
I feel for you , I'm pretty much diagnosed now , after 15 years hard research and persistence, it takes its toll , and as you say often you just give up for awhile because you are just too sick and tired to keep fighting ...until the next new symptoms pop up!
Diagnosis doesn't mean a "cure" for most of these illnesses, it means long term management and you still need to come to terms with the idea that you can't go back to the " Old Normal" but need to adapt and pace your lifestyle and diet into a " New Normal" that fits all of your medical needs , not necessarily your wishes or principles to prevent extra flares happening and gain a quality of life that may be slower than before but is still fulfilling and fits you .
Thank you, will respond properly when a little more alert!
Thank you Bee, all makes a lot of sense 😊 Well, that's a whole long list of tests...If I ask my GP for them she's going to throw her head in her palms!
I sort of feel like I can assume there's a problem with gluten, I get digestive symptoms when I eat it and I don't get them when I don't eat it. GP said just avoid it especially since my Father is Coeliac and in fact has Diverticulosis as well. She also said if I don't have gastro symptoms all the time (which I don't) then no point looking at that route ie. she will not do any other tests. I get what you are saying, trying to get tested may help get a foot in the door.
I did have a private EBV test, that cost a fortune. It showed current cellular activity. The functional medicine person I was seeing gave me a whole pile of expensive antiviral herbs and supplements, made no difference to how I felt so gave up on that. I don't know what to do about it now. I've spent many thousands on functional medicine to no avail.
Yes, supplementing 800mcg of folate per day for years. Strangely when I stopped supplementing for 3 weeks my test results went up from the first one to the second one. Both tests taken in the morning having fasted. It doesn't make sense, surely the levels should have stayed the same or gone down? I guess it shows no deficiency there?
"and as you say often you just give up for awhile because you are just too sick and tired to keep fighting ...until the next new symptoms pop up!" YES ☹️
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Optimum Ferritin Result?
Need help not sure what to do now
I'm now totally confused about folate/folic acid/B12 combination.
Supplements and exercise
