b12 deficiency through diet - Pernicious Anaemi...

Pernicious Anaemia Society
22,721 members16,026 posts

b12 deficiency through diet

Yolix
Yolix

Hi to everyone, I was recently feeling unwell with pins and needles in my left hand going up my arm, palpitations, fatigue, tremors, sweating and others. I have been a vegetarian for 8 years although I eat some dairy like eggs and cheese. Three years ago I had severe iron and vit D defiency which I now correct through supplements so I made a visit to my gp who got bloodwork done which was all ok, however I was not tested for b12, I was then told by a friend to take b12 supplement as I could be deficient which is what I have done, I also went back to my gp who said that he didn't think of including b12 in the bloodwork and to continue taking 1000mg in liquid form for 10 days.

I feel like I am on a rollercoaster ride, some days I feel great and the pins and needles are light, other days symptoms seem to come back. Can anyone tell me if this is normal? it has now been 14 days of supplements.

Sorry for the long post

thanks

24 Replies
oldestnewest
clivealive
clivealiveForum Support

Hi Yolix

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I hesitate to suggest that you may be Folate deficient as I assume that, being vegetarian, you eat plenty of leafy greens, but initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Both iron and folate may be needed so please have these levels checked by your doctor.

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

Yolix
Yolix in reply to clivealive

Hi Clive, thank you for your reply. Its good to know it can take a while. I haven't checked my folate levels unfortunately but I am taking a multivitamin, my usual iron and vitamin D once a month. I went back to my gp this morning but he dismissed the fact that it is really a b12 problem and gave me anxiety managing medication. I will be patient and continue to take b12 then return to the doctor.

As I said it really is a rollacoaster!

Thank you

Foggyme
FoggymeAdministrator

Hi Yolix. Your history of vitamin D and iron deficiency may point to an absorption problem, which could, in turn, lead to B12 defIciency (this takes longer to develop because the liver has a large store of B12 that can take several years to run out).

So you could indeed, have B12 deficiency (thought testing for this will now not be possible because the supplements you've taken will skew any blood tests).

Here's a symptom list for B12 deficiency (not exhaustive, there are many more symptoms), however, it will give you an idea of what to look for:

pernicious-anaemia-society.... (PAS Symptom Checklist)

The symptoms of B12 deficiency are also symptoms that can be due to many other causes. And I'm saying this with caution in mind because...

The pins and needles (parasthesia) experienced with B12 deficiency are usually symmetrical and effect each side of the body equally, rather than just being present in one limb. So your symptom of having pins and needles in the left hand and arm is an atypical (though not impossible) presentation of B12 deficiency.

Pins and needles in the left arm, fatigue, palpitations or fast heart rate, shortness of breath, sweating (or being cold and clammy) can be a symptom of problems with the heart, and these symptoms can also include pain in the neck, jaw and chest (though not everyone experiences pain and some get very few symptoms).

There is a greater risk of heart problems if you're a diabetic, have ever been a smoker, are obese, have high cholesterol or blood pressure, have a history of blood clots, or if there is a history of cardiovascular disease in the family.

I'm certainly not suggesting that you have problems with your heart: I'm just flagging this up because of the atypical presentation of your pins and needles and the fact that there's an element of uncertainty about a diagnosis of B12 deficiency.

And it's entirely possible that your GP will have taken a full medical history, done a thorough medical examination, and ruled this out...so please excuse if that's the case.

However...and again, just being cautious...if your symptoms have a pattern of coming on immediately upon exertion and are then relieved when you rest, and this pattern keep repeating itself. Or your symptoms fail to get better or start to become worse, then you should seek further medical advice.

And being even more cautious...f you experience heavy or crushing pain in the chest, jaw and/or neck pain, become out of breath and/or have a fast racing pulse, or get cold and clammy skin, then you should seek urgent medical advice.

But also keep in mind, as clivealive says, that if your symptoms are due to B12 deficiency (and they may well be), recovery can take some time...and some people do feel worse before they begin to feel better.

It's also worth noting that if you do have absorption issues (various causes), the oral B12 preparation may not work for you and you may need B12 injections instead. So worth re-visiting this with your doctor if your symptoms fail to improve (or only partially improve).

PA and/or B12 deficiency can be very complex and many GP's are not well informed, so please post again if you need any more advice or support.

Good luck 👍

Yolix
Yolix in reply to Foggyme

Thanks very much for your reply.

My doctor checked blood pressure and heart but I do not have chest pain or shortness of breath or my symptoms do not come on upon exertion. I am fairly young, non smoker, not obese or have high cholesterol. My symptoms seem to be fairly similar to when I was anemic but with the added pins and needles.

This morning I went back to the doctor but he dismisses that it is b12 and he said I would have been better by now even though the pins and needles do seem to be less bothersome. He prescribed anti anxiety meds and said it is more likely a Serotonin imbalance, so you are right in saying that GP's are not well informed.

clivealive
clivealiveForum Support in reply to Yolix

Sadly even some antidepressants can have an adverse effect on B12 levels

Yolix
Yolix in reply to clivealive

Great, one big vicious circle!! Not sure what I am doing now as I still feel pretty bad!!

Hi,I’m sorry you’re feeling so unwell,these are the type of things I suffered when first being diagnosed with b12 deficiency and p.a and it’s not nice at all,I know how it’s affecting you and wouldn’t wish this on anyone but I can say in my case that after now being on treatment for a few years that things in general seem to have gotten better,I’m sure it takes our bodies time to get back to some sort of balance,it did feel though like I’d never see light at the end of the tunnel but I hung in and it’s now over the last 2 to 3 years I feel things have improved to what it used to be,I still get these symptoms but not so much and I still have days where I feel so unwell but I think it’s the knock on effect b12 and p.a has on our bodies i.e hearing problems,digestive problems,memory problems and other neurological problems that become a cause for concern,I now find that I have pancreatic problems and can’t digest any food whatsoever so have to take creon to digest all food,I also struggle with weight and malabsorption so now have to take fortisips to help build up my body,again this is a lifelong thing,according to my consultants all as a result of b12 and p.a affecting other things,I eat regular and eat all suggested by my dietician,what foods to eat,which foods to avoid,I think our biggest hurdle is getting the medical profession to actually listen to us and understand just how this illness affects us all,not a lot of local g.ps know much at all about b12 and p.a and that in itself can make things so much harder,I was lucky that one of my g.ps knew more than the others and realised how it affects lots of people like myself.shes been great and I would have struggled without her,she’s been great recognising that anxiety and depression becomes part of this for us sufferers and has been brilliant and sympathetic,this has made things so much easier to deal with and it would be great to think everybody got the same response and treatment I get now but unfortunately I know that’s not the case,I think we have to make sure they hear what we’re saying as after all it’s our bodies and we know when our bodies aren’t right,I started 12 weekly injections but now have them every 6 weeks and I think by getting them on a 6 weekly basis has done the world of good,I feel a big improvement of what it was like before,I don’t take supplements and feel things are so much better than it used to be,I still have more bad days than good,but the good days are so much anticipated and I really do make the most of them,it’s a long hard road to some sort of recovery,if you can call it that which I’m sure others reading this will understand what I’m talking about,but by hanging in there things do seem to improve bit by bit and we then really do enjoy the few good days we get,I hope you get the treatment needed to enable you to eventually get back to some sort of normality as there’s lots of other health issues it affects to contend with,but with the right medical people involved along the way you hopefully will get there,but you make you’re point and tell them how this affects your life on a day to day basis,after all we suffer with it and feel the affect it has on us,I do wish you well for the future and I sincerely hope you don’t have it as bad as I did initially it’s not what I’d wish upon anyone,I’m so grateful that I’ve had good medical people along the way to help me get to where I am now without this help I would have been in trouble I’m certain of that,I hope things go well for you in the hopefully soon future and my best wishes are sent to you with sincerity,all the best to you...fenty.

Yolix
Yolix in reply to fenty

Hi Fenty

I am still feeling bad but trying to sort it out. It really is a hard time at the moment but it comforting to hear about other people's stories and realise I am not going mad! My gp isn't great and has prescribed anitdepressents.

I hope things get better for you, and thanks very much for sharing your story, it is comforting to know I am not alone in feeling like this.

Take care

Hello Yolix , you could try stopping supplements for few months and have have b12 level checked , the results would be high now but doesn’t rule out absorbtion problem . You could also ask your GP to check tour thyroid , as I had many of your symptoms and I have an under active thyroid, Take care

Yolix
Yolix in reply to Annnon58

Hi Annon

Yes I had my thyroid checked and came back fine.

Yes I may stop supplements then take the test just to see what my levels are at.

Thanks very much for your help

Marz
Marz in reply to Yolix

Fine means your results were in range ! - but is is where you are in the range that is the key to wellness - and so little understood by Docs. Did you see the actual results with ranges ? Always obtain copies of results so you can monitor your health and check what has been missed ! They are legally yours.

I have been on the Thyroid Forum for almost 7 years and read daily of so called fine results ! The TSH needs to be below 2.5 and the FT4 and FT3 in the upper part of the range. Also anti-bodies should be checked - TPO & Tg - to rule out Hashimotos - the most common thyroid condition globally. The NHS very rarely test the T3 or the Tg anti-body and so 1,000's are missed. Low B12 goes hand in hand with Hashimotos - and low folate - Ferritin - VitD too.

thyroiduk.org

designer8
designer8 in reply to Marz

Thanks for the figures, Marz. I was wondering about mine and was waiting to see my naturopath to discuss (I never trust the range).

Marz
Marz in reply to designer8

Sadly few people understand the results - medics are trained to look at ranges and if in range everyone is declared normal - sadly. Also rarely are all the correct tests carried out - saving money - or not - as so many other pills and potions are prescribed - treating all the symptoms individually.

Happy to help with your results - if you do not want to post them on the Forum you can always send me a PM.

Yolix
Yolix in reply to Marz

Hi thanks for your reply! My mother had thyroid issues and my doctor tests my tsh levels which were 2.84. Thats the only test he did!

Marz
Marz in reply to Yolix

Well that is a Pituitary hormone and tells you very little about the thyroid itself. They wait until the TSH is HIGHER - which can take years and meanwhile you suffer endless symptoms. So you need the FT4 - FT3 tested along with the anti-bodies - as explained above. How do you know if you have Hashimotos or not if the anti-bodies are not tested ?

If you click onto the link I posted for you above - you can see the Menu and then click - ABOUT TESTING - to view the Private companies doing the correct thyroid testing - if you are in the UK. The website also explains details to help you understand the workings of the thyroid. Information is power and enables you to ask the correct questions - and prevents you being fobbed off !

designer8
designer8 in reply to Marz

Thanks! Totally agree re the medics - that’s why I now trust a naturopath. She was the only one who considered checking my folate, copper, zinc and others - and will know what to do to treat me once the results are known. I always left the others with no treatment options for my terribly debilitating symptoms, except the advice “those symptoms could be due to any number of things” but they never delved to check what those other things might be! I gave up on them in the end just as they had seemingly given up on me.

Marz
Marz in reply to designer8

VitD is also a good test to have. So what did she say about your thyroid results ?

designer8
designer8 in reply to Marz

Yes, Vitamin D has been done - I'm around 86 - wouldn't mind getting that up a bit. I see her this Tuesday so will chat to her about the thyroid results then.

Marz
Marz in reply to designer8

Hope all goes well. Hopefully there are the full thyroid results and not just the TSH !

designer8
designer8 in reply to Marz

Thank you. Yes, it included the 3 and 4 ... I don’t think there were any others...

HiddenThis reply has been deleted
Yolix
Yolix in reply to Hidden

Hi thanks for your reply. How did you detox? Be careful however with your b12 on a vegan diet, my brother is vegan and takes regularly b12!

You may also like...