Gosh what next: My B12 problem:

Happy New Year to you all and all the best for 2015.

I had my appointment to see the Hematologist just before Xmas, he was very nice, but left me a bit

concerned.

I told him that my symptoms, tingling, muscle twitching,tremors etc,returns daily, but then disappears again, well almost.

He said, your level of serum B12 is 2000 so your symptoms should not be returning.

I asked him,if perhaps the symptoms returning is in fact, my body repairing itself.

He said, this could be possible, but, he was not convinced, he felt there was something not right....

I have been taking B12 injections now, for 16 weeks, and I still have daily symptoms, which I have until recently, put down to my body repairing itself..

I saw my new DR, and she advised me to now stop the B12 shots, as I now have enough in my system.

I have now ceased my B12 shots, hoping perhaps to only need one,once a month.

However, I have noticed in the past few months,that I do seem to need more B12 shots, when I should by now, not be needing them so frequently.

I had decided, to have my amalgam fillings removed some weeks ago, but have delayed having this done.

I am beginning to wonder if I do have mercury in my system now, as I never seem to be free of any of my symptoms.

I stopped the B12 ten days ago, and my tingling, tremors,twitching are slowly getting more intense.

After years of being vegetarian, I am now a meat eater ( a very reluctant one I must admit ) .

Any advice, will be greatly appreciated.

Manukia

[bluejeans16]

Hi. i am not sure about the lack of B12 but I am also veggie and have been for most of my life. If you make sure eat the right food and if you need to (take supplements) you should not need to start eating meat again, but I suppose it depends on why you stopped eating meat in the first place. if you are relutcant to eat meat your consience is telling you not to eat meat but it is up to you! I don't think all of the problems that you are suffering have anything to do with vitamin shortages in you body it is just part of having fibro.

[Hidden in reply to bluejeans16]

Hi there and thank you for responding.

I am not sure, but I think that I became B12 deficient because of being vegetarian, well I hope that is the reason, as this I can correct,I hope.

It was a very hard decision to start eating meat again,but if this helps my B12 deficiency, then I have no choice.

The only good sources of B12 are from meat,fish and eggs.

I have always taken a B complex tablet because of not eating meat, but it didn't protect me from becoming deficient in B12.

I don't have fibro, but I do have, thyroid problems, and I seem to have logged onto your forum.

It was lovely chatting to you, take care of yourself.

Manukia

[BeansMummy in reply to Hidden]

Hi manukia - I have been lurking on the fibro boards as my GP keeps mentioning fibromyalgia in passing, but I am usually on the thyroid site.

I have been a strict vegetarian for over 40 years, and have NEVER had a problem with being deficient in B12 at all (or anything else) - until my Hashimoto's was diagnosed. I then had a slippery slope downhill with deficiencies in just about everything. I am now under the care of a neurologist because of similar symptoms to yours (twitching, tingling, cramp), just to check if there is anything else going on.

I have a vegan daughter, and she has better levels of vitamins and minerals than I do (she was tested too), so I don't necessarily accept being a veggie as the reason for low B12 if you are eating reasonably well. I make a huge effort to eat better now than ever before, but I am simply not absorbing what I need and need supplements.

[Hidden in reply to BeansMummy]

Hi BeansMummy,

I saw my neurologist about 3 weeks ago,he gave my legs a thorough going over and confirmed that I didn't have MS or any peripheral neuropathy, but to continue with

my own treatment.

I felt that perhaps I had wasted his time, ( I had not requested to be sent to a Neurologist in the first place).

I eat sensibly, and fish and eggs has always been in my diet, just not red meat, and poultry.

It has been pointed out to me, that being vegetarian may not have helped my B12.

I have very reluctantly taken to eating meat, I have to try and see if this can improve my symptoms.

I was told that I should have my amalgam fillings removed, as this constant need for B12 is a sign that mercury may be involved.

If you have been fine as a strict vegetarian, then perhaps my symptoms could be due to absorption problems.

The Hematologist was slightly concerned that the Neuro didn't want to see me, if my

symptoms returned.

Thank you so much for replying, much appreciated.

Take care.

Manukia

[BeansMummy in reply to Hidden]

I think my GP only referred me to a neurologist as it was the only thing she could think of to stop me continually visiting her about my visibly twitching muscles, tingling/numbness, cramps, pain etc. My B12 is in range (how I hate that phrase), albeit low, so it will not be seen as relevant by the NHS. I am frustrated beyond belief that they it seems impossible for doctors to accept that my severe vitamin D/iron deficiencies, low B12 etc. could possibly, just possibly, be connected.

The neurologist has been brilliant, but the whole process is so slow. I have had a barrage of blood tests, and recently had nerve conduction tests - I fully expect to be told I am fine, despite continuing symptoms. I have chosen not so take any B12 supplements until I have all the test results. There is no way on this planet that I could contemplate eating meat again, I think my body would shut down altogether! (Besides, if it is an absorption problem, no amount of shovelling food in will help).

How could your neurologist tell that you didn't have MS or peripheral neuropathy? Did he actually do any tests?

[Hidden in reply to BeansMummy]

Hi BeansMummy,

I was going to have the IF test done privately, and was told no B12 for 48

hours.

I had prior to this, been taking methyl B12 sublinguals, which had been keeping the symptoms in the background.

I duly stopped the B12 for 24 hours, I couldn't go the 48hrs, my whole body was like, I was sitting atop a pylon,it was scary.

The sublinguals did a good job of masking the progression of my B12 deficiency,I had no idea it had progressed this far.

In a way,I had done a medical experiment on myself,when I started the spray again, the symptoms again, went to the background.

I knew then, my need for the B12 injections,damage was being done to

my body on the sublinguals,the spray couldn't cope any further with the deficiency.

So I know I am B12 deficient, and my active b12 test was in the grey area.

I would have liked my B12 deficiency accepted by my GP and recorded in my files, but at what a price.

I would have been put through test after test after test, and the ongoing damage to my poor body was still going on.

I would never have coped on the NHS regime of 1000mg every 3 months.

It is like giving a dried out pot plant 1drop of fluid every other day, this is the effect it would have had on me.

I am not happy about eating meat, one little bit, but if this is the reason

( I know I am clutching at straws ) then I have to give it a go.

It was a very hard thing to do, believe me..

The Neurologist was 100% sure I do not have the symptoms of MS.

I know MS also strips the myelin sheaf, but he said,I don't have the other

symptoms.

I don't have any damage to my feet, this is where my symptoms first appeared.

Listening to the other posts here, I do need to see an endocrinologist, I feel that I have a conversion problem.

I have also been doing a lot of walking, and maybe I have depleted my B12 levels.

Don't wait too long BeansMummy, if your symptoms are intruding on your quality of life, then take matters into your own hands.

Thank you for replying.

Manukia

xx

[babebatista]

Hello Manukia,

Happy New Year to you also. I'm not entirely sure that you have been given the right information regarding your B12 injections. I started on them last year and after having the first say 8 I asked my nurse a question and I simply said "When do I stop having the B12 injections?" she looked at me and told me that my doctor should have spoken to me about them, but I am going to be having them for th rest of my life. I wondered if I could stop and they said no. I am due to have my next one on Monday (12th Jan). To be fair it hasn't worked for me as I still have the same symptoms and if anything the tingling has increased. I will ask my nurse on Monday about it.

I do hope you get answers to your questions but from my perspective I was not aware that you can stop having them once you start having them (bit like a pringle really). No seriously you have opened my eyes this morning to something new I can ask the nurse about. This is what I love about using this site, you can ask questions but you get answers from everywhere.

Good luck, please do let me know how you get on. I in turn will let you know how I get on. Feel free to message me also.

Gentle fibro hugs

Kimberley

xxx

[Hidden in reply to babebatista]

Hi Babebatista,

Thank you for responding.

I am not recognized as B12 deficient by my Dr so I have had to resort to self injecting myself.

I came in the grey area in my blood tests,even with all the miserable symptoms of this deficiency, they would not give me any B12 injections.

If you are B12 deficient, you are on the B12 shots for life,you have to have them!!

I am hoping my deficiency is diet related, and can be treated by my eating meat..

You say the tingling has got worse, maybe you need to ask your GP, about having more B12 injections.

Have you had your folate and ferritin levels checked, also your Vit D these all need to be in the higher range.

When you have B12 D it tends to affect the others, and these need to be optimal.

You can up your intake of folate by simply eating lots of greens every day, spinach is very good.

Why don't you have a look at the pas and the thyroid site, as you will find lots of people over there, also willing to help you, with your B12 deficiency.

I wish you well Kimberley, take care of yourself.

Manukia

xxx

[babebatista in reply to Hidden]

Thank you I will do xx

[honor1a]

Hi Manukia, I require B12, but get one injection every eight weeks, I don't get the tremors or muscle tingling with B12 issue, but I do get the symptoms with my thyroid, u have an underactive thyroid & take thyroxine every day doze just now is 150mg daily reduced from 200 mg after I started the B12 injections the doze reduced of the thyroxine, when I do get the the tingling & tremous, palpations too! I get my thyroid bloods done, you may have a thyroid issue symptoms same either under or over active thyroid, if like me you carry extra weight struggle to lose it & more tired than the person next to you it's most likely under active as over active thyroud sufferers tend to be skinny, hope this is of some help to you!!! Wishing you a happy & healthier 2015, Love & Hugs being sent your way xxx

[Hidden in reply to honor1a]

Hi Honor, thank you for your reply.

I have responded well to the B12 injections, but the symptoms never went away completely,and I put those symptoms, down to my body now healing itself.

I have wondered that I may not be converting FT4 to FT3 properly.

My Levothyroxine was reduced 2 years ago and I have always felt under treated.

I think that I will need to see an Endocrinologist to get my thyroid issues looked into.

It has crossed my mind that the tremors are thyroid related, but I have been so concerned about

my B12 deficiency that the thyroid took second place.

I have struggled for years with my weight, always calorie watching, to keep my weight in place, it is a struggle.

I have started to take my B12 injections again today,as the symptoms are worsening.

I can't understand why, I can't even go 10 days without a B12 shot.

It is frustrating, when you have other ailments, that can add to the confusing bag of symptoms.

I wish you well for 2015 and I thank you for replying to me.

Manukia

xxxxx

[honor1a in reply to Hidden]

Hi Manukia,

You refer to B12 injections as though they are being self administed!!!! I'm confused as I have got to be injected by a Dr or a nurse as the B12 has got to be injected into a muscle! the auxiliary nurse not even qualified to administer the B12 injection. The B12 is for life re your point of eating meat etc to increase B12 will not work. You get the injections because it is something in your stomach that absorbs B12 from food when that stops working injections essential B12 deficiency requiting B12 injections is known as "Pernicious Anaemia" other symptoms I had before qualifying for B12 injections Included always bitterly cold, bones felt fragile also as though they were ice, had headaches, dehydration, constantly needing to drink water, I never realised it at the time but I was not producing saliva or other bodily fluids, constantly tired, when I got my first B12 injection my bodiy was experiencing things not had felt in a while which was quite surprising, especially when the salivia gland reactivated I was literally drooling like a baby hee hee, after a few hours it settled down to normal saliva production, are you in the USA or the UK? Wishing you well xx

[Hidden in reply to honor1a]

Hi Honor,

I am giving myself B12 injections the Dr would not accept that I had B12 deficiency.

What you say is correct, B12 injections are for life, but I am hoping against all odds, that my deficiency may have been caused by my diet, I think I may be barking up the wrong tree here as well.

The test for intrinsic factor in the stomach is so unreliable, that I have not bothered to have it done.

When I gave myself my first injection the first reaction I felt, was the tiredness lifted,

and I could walk without stumbling.

I have kept a journal of my B12 shots and all my symptoms,it is good to see where I have been,to appreciate where I am at now.

I am so glad you are now on the mend,keep well Honor.

And, thank you for your kind reply.

Manukia

xxx

[Hidden]

I agree with bluejeans16, I think this is all part of FMS, I too am semi vegetarian, semi, as I started to eat fish again after being totally veggie for around 5 years. My vitamin levels are fine tho, I hope you get your answers soon, xx

[Hidden in reply to Hidden]

Hi Sunnygirl, thank you for replying.

I don't suffer from FMS, but I do suffer from Hypothyroidism.

I have been a vegetarian for nearly 25 years, although I did eat fish, when I could get it.

Eating fish will give you B12, particularly cod.

Keep well, and all the best for 2015.

Manukia

xxxxx

[mimimouse]

Hi manuka, my daughter has mentioned several times about the fact I should have my amalgam filling removed. It is a costly business having them removed safely and I have many. She has only one so is having her filling removed. She does not have b12 problems but like yourself was a veggi and now eats meat due to feeling very tired. I hope you feel better soon and would be interested to know if having your filling removed makes a difference. x

[Hidden in reply to mimimouse]

Hi Elaine, and thank you for replying.

It can be costly to have amalgams removed,but you do need to look around.

I had one dentist surgery, who offered not only coffee and tea, but champagne as well to sip, while you waited for your appointment.

But, she charged for the amalgam removal, as well as the composite filling.

The dentist I am with said, that my teeth with amalgams are in good health, no need to remove.

The cost of removal of my amalgams from my dentist, is only the price of the composite filling.

I most certainly, would not consider amalgam removal, if I was not B12 deficient.

If you feel you have health issues with having amalgams in, then I would not hesitate to have them removed.

Take care.

Manukia

xxx

[honor1a in reply to mimimouse]

ElaineB53

I like you have several amalgam fillings I asked my dentist about removing them, his opinion was he does not recommend that, as disturbing the filling would create the amalgam particals which in turn get into your blood stream, keeping the fillings he said was the lesser of the two evils, my Dr also said regarding the Fibromyalgia is linked with thyroid & B12 (pernicious anaemia) & that they are all autoimmune conditions & are linked , but also from my niece who is doing uni studies told me, I probably developed fibromyalgia from being on too high a doze of thyroxine!!! which I believe might have just a small influence on fibromyalgia, i was on 200mg thyroxine, suffered excruciating fibromyalgia pain, after my first few B12 injections my fibromyalgia pain lessend somewhat, but pain level is still at chronic levels, but more manageable, my thyroxine medication dose was reduced to 175mg & has since reduced again & I'm currently on a dose of 150mg, I apologise for going on a bit, but I do hope you can gleam some helpful hints from this. Take care, wishing you a happy & healthy 2015 xx

[mimimouse in reply to honor1a]

Thank you manuka and honor1a, yes my dentist said the same and it is interesting that a few weeks ago I had to have a cap fitted over an old amalgam filling and my dentist needed to file the amalgam down releasing particles which created a massive flare up of my CFS but my fibro pain remained the same. I would definitely have them removed by a specialist dentist who uses a dam to collect the particles and uses a different drill that breaks the amalgam into chunks rather than small particles, if I could afford it.

I have massive fillings in many teeth. I was told by a dentist many years ago that the 8 large amalgam filling that I had when pregnant with my last child were not needed and that he did not line the teeth either. I have considered having all of my teeth out but would be devastated if my health remained the same. I do not know if I have been tested for B12 deficiency, I probably have over the years. It is interesting honor1a that your GP mentioned that fibromyalgia is connected to B12 and thyroid.

take care both and have a happy . healthy 2015.x

[honor1a in reply to mimimouse]

Hi ElaineB53

The test for B12 is called an "intrinsic" blood test the blood goes to one lab they do whatever to the blood & it then goes to another lab before results are given whats done to the blood I don't know, but as far as you getting tested for it, it is just taken as a normal blood test, as far as your concerned x

[mimimouse in reply to honor1a]

Thank you honor 1a.x

[honor1a in reply to mimimouse]

Your welcome, my name is Honor full name Honoria but could not get full name accepted on the site that's why the 1a lol maybe I should try remove the 1a xx

[mimimouse in reply to honor1a]

I thought your name might be Honor, although Honoria is an unusual name. x

[Hidden in reply to mimimouse]

Hi Elaine,

Ask your GP to give you a serum B12 blood test, and also a Folate and Ferritin and Vit D, when the results are back, get your surgery to print them off.

Then post the results on all the forums , then you are covered for someone giving you a response to those blood tests.

Having amalgams out, doesn't necessarily improve your health, other problems may be the cause, this is a good place to start with the blood tests.

Keep in touch.

Manukia

xx

[Becky1970]

Hi Manukia I have Vitamin B12 injections and u are on them for life when u have a deficiency, I eat meat but cannot store B12 that's why u have to have regular injections every 12 weeks, it has nothing to do with tingling or twitching that might be FM or medication side affects. The only thing u notice with B12 deficiency is fatigue. I also have FM and twitch and have pins and needles in my hands and feet, I take Gabapentin and it helps with this plus the pain. Your best thing to do is talk to your nurse about B12 injections that's where I got my info from xx all the best

[honor1a in reply to Becky1970]

Becky 1970,

I like you I get B12 injections & yes they are for life, it's not just for fatigue, as I require it for energy levels saliva & other bodily fluid production, was getting chronic headaches lasting 4 or 5 days headache free few days to a week & headaches returned for another 4 or 5 days since on B12 all headaches & dehydration no longer a problem, when I first started on B12 I was getting them every 13 weeks but by week 7or 8 I was pretty much sleeping the remainder of the time with headaches & dehydration so now get my B12 injections every 8 weeks. Wishing you a happy & healthy 2015 xx

[Hidden in reply to Becky1970]

Hi Becky,

I know with me my B12 symptoms started with the tingling in my feet and numb hand.

I did have the fatigue towards the end, along with the balance problems.

I now self inject B12 so my deficiency problem has been sorted.

I am hoping now that perhaps I have been over doing my walking so depleted my B12 level,

well that's, what I am hoping has happened.

Thank you for replying, much appreciated.

Keep well

Manukia

xx

[MariLiz]

Hi Manukia,

I have low B12 and under active thyroid, I am on Levothyroxine for the thyroid and injections for the low B12. I still get pins and needles, mainly in my feet and lower legs. One GP at my practice sent me to a rheumatologist because of the aches and pains, they told me I have fibromyalgia too. Having asked a few questions on here, some of the symptoms might be related to my thyroid meds needing some adjustment. I have made an appointment to see the original GP (who found the B12 deficiency) to discuss things and see if it's worth seeing an endocrinologist again about the thyroid. One of the main issues seems to be there are often several things going on at once! Hope you get sorted. MariLiz

[Hidden in reply to MariLiz]

Hi MariLiz,

I agree wholeheartedly with you, when you say there are often, several things going on at once, it does make the symptoms confusing.

I will request an appointment with an Endocrinologist, as I do feel that, I have a conversion problem, but is this connected to the B12 symptoms, that have returned, I don't know.

Thank you for replying.

Take care

Manukia

xx

[Hidden]

hi i have been having b12 injections for about 3 years. once every 3 months. but i have been told i will have to have then for life

[Hidden in reply to Hidden]

Hi Maco,

Yes, you are right,if you are B12 deficient you are on injections for life.

[Hidden in reply to Hidden]

hi manuka i still get pins and needles and a sore numbness in my right hand and leg. before i started the b12 injections i had serious memory problems and chronic headaches. at one stage i thought i had dementia. but since i started the b12 my memory has improved and the headaches are much better.but still the fybro does its best to keep me down. thanks mark

[Hidden in reply to Hidden]

Hi Maco,

If you are still getting pins and needles and numbness in your hand, perhaps you need more frequent B12 injections,may be worth looking into.

I am glad to hear you are improving, it must have been a huge relief to you, to find the answer to your symptoms.

Take care of yourself.

Manukia

[Hidden]

Hi Manukia,

Have you had your vit D checked? I had all those symptoms and eventually, after being on Vit D for some months, the symptoms have reversed and even though they do occasionally return, it's usually when I'm exhausted and have been overdoing it. Might be something to look into if you haven't already.

[Hidden in reply to Hidden]

Hi ukwahine,

The name Wahine is a Maori name for a woman, happy memories for me.

I have had my Vit D checked a few months ago, it was 143 an increase from 65.

I only take Vit D once a week now and that is only if I remember, gosh I hope Vit D levels don't drop quickly.

I will start to take my Vit D daily again, just in case this is where my problem lies.

The only other thing that I have been doing a lot of lately, is walking.

I may have been over doing it,and what I am experiencing now, is that I have exhausted my B12.

I do remember reading somewhere, about not over doing it, as this can deplete your B12 from your system.

I hope this is the answer, but a warning for me, not to over do my walking again.

Thank you for replying Wahine

Take care

Manukia

xxx

[TheAuthor]

Hi manukia

I am so sorry to read this and I genuinely hope that you can find the answers that you so desperately desire and deserve. I can see that you have been given loads of wonderful advice and input, so I will just wish you all the best of luck.

All my hopes and dreams for you

Ken

[Hidden in reply to TheAuthor]

Hi TheAuthor,

I have been given wonderful advice from everyone, and I appreciate this enormously.

All the very best to you as well.

Take care

Manukia

[lucindajethol]

Hi Manukia

My father was B12 deficient and had to have injections every now and then, approx 3 months apart. He knew when he was due an injection as he became very tired and irritable, my brother was also B12 deficient and the same symptoms present. They only went for injections when required. Both were meat eaters all their lives. None of the symptoms ie tingling etc were present in them, in fact your symptoms sound more like someone with an underactive thyroid problem as those were my symptoms which get worse and worse if not treated with Levothyroxine. I assume you have had Thyroid bloods taken already, but if not get them done asap. I also have worried about mercury fillings ie a metal taste in the mouth, but apparently having them removed can release more mercury into your body so a lot of dentists do not advise the practice in the UK.

I started with tingling, numbness etc which got much worse and I ended up with terrible joint pain which effected every joint in my body, so bad I could,nt sleep at nights. Now on prescribed Levo I am fine and my health is good again. Everyone is very different and it took me a while ie 3 visits to my doctors initially with a list of all my symptoms before getting the blood tests required and a positive result. Wish you luck sorting out your problems. Thyroid problems and B12 deficiency are related, the injections being the more severe course of action. I don,t advise anyone to self medicate.

[Hidden]

Hi Lucindajethol,

My B12D is diet related,well I hope it is,and I am now trying to put this right,by becoming a meat eater.

I know all my symptoms were relieved, with the administering of B12 injections.

If the GPs don't recognize B12D then you have no option, but to self medicate so you can live.

I just feel, that I am not getting control of the symptoms, as I did before, and wonder, if I may have mercury poisoning now, and how on earth, do I deal with this one!!

I went to see my GP yesterday, and requested to see an Endocrinologist, as I don't think I am converting well.I may decide to go private to speed things up, as the appointment, could takes months to arrive.

If you are worried about your amalgams, and have a metal taste in your mouth, why don't you try to find a holistic dentist, to do the removal, a lot safer for you, don't go through a normal Dentist.

I am glad you are all sorted, it must have been a worrying time for you, and a painful one.

It is tiring always standing up to GPs,3 visits you had, to have been listened to.

I changed my Medical Practice, and we are both glad that we did.

Take care of yourself,and thank you for replying.

Manukia

xx