Do not know what to do regarding my B12

[Ceriane33]

Hi....My question is quite complicated. I was diagnosed with B12 deficiency 5 years ago after having health problems for years that had become progressively worse. I'd had neurological symptoms since my mid twenties, but by 28 I had a full year of getting really bad with it, I had every symptom under the sun that you can possibly get for pernicious anaemia. I also had idiopathic angioedema, and stomach problems. I was never diagnosed with intrinsic factor antibody and no cause was ever found for my deficiency...Coeliac disease was something that was looked into...but that never came up in a test either. I was prescribed B12 injections along with folic acid and iron and within three weeks of having loading doses I felt amazing! All of my symptoms disappeared. After about 3 months my injections ran down and I was back to square one. I had my 3 monthly injection and felt better for a few days, but that was it. The GP's then told me I didn't need them any more as they couldn't prove I couldn't absorb B12 and that I was never that low anyway. My level was 154 and I felt like I was drunk, I had dry skin, sore lips and tongue, burning hands and feet, no energy, mind racing, memory problems, you name it...I felt horrendous. I knew I wouldn't get anywhere on the NHS so I took to self injecting...ordering online from Goldpharma. I ordered hydroxycobalamin and began injecting every other day. Pretty soon I felt fantastic again. I did this for over two years and didn't think to stop...that's when I began having swelling in my stomach and a salty taste in my mouth, head pressure, memory and speech problems, problems with balance and co-ordination and symptoms much worse than when I had B12 deficiency. I was really scared as I genuinely thought I was dying. I stopped injecting as I heard it can deplete your pottasium levels in high doses after a long period of time, and my symptoms were similar to that...within a few weeks, these symptoms thankfully disappeared and I felt well again for 5 months. Then the B12 deficiency symptoms came back, so I gave myself 4 injections, one every other day....my low pottassium symptoms came back and then after a month I felt well again, for another 4 or 5 months. Then April this year...all of my symptoms started to come back, I also have symptoms consistent with Candida overgrowth.....I got progressively worse throughout April, so gave myself 6 B12 injections one every other day (like loading doses) again...but I don't feel better at all...I feel just as bad, if not worse. I have no energy, can't think clearly, have a sore tongue, the whole of my body feels dry and sensitive especially my lips, hands and feet which have a burning sensation....I feel horrible and don't want to be stuck like this forever....I really don't know what to do...any suggestions, I would be really grateful!

[clivealive Forum Support]

WOW Ceriane33  that is horrendous and I do so wish I could help but I'm not a medically qualified person just a fellow sufferer.

Hopefully there are others on here who will be able to advise you and I can only wish you well for the future.

[B12Pleeeaaase]

Think I have discovered the answer to all this misery Ceriane33 re do not know what to do regarding my B12.  I have just started using vita sciences B-12 Patch. You just stick it behind your ear and it releases over 24 hours. It makes perfect sense as your body doesn't really store B12. You are getting it into your system all day unlike an injection which you get in one hit then when it wears off nothing for weeks. It works like a nicotine or a morphine/painkiller patch. I feel happier, more energised, my eczema has gone, my bowel is better etc etc etc. I have only used it for a few days and was using B12 Solar sublingual Methylcobalamin 5000 MCG nuggets tablets that you put under your tongue. I was also using an organic spray under my tongue that was made up of spinach, beetroot, asparagus etc. My son has been having injections and he seems to be worse after them now. I ordered everything from amazon. I also got advice from vitamin b12d.org which is a gp who runs a charity to help people with b12 deficiency. Let me know how you get on. 🐧

[deniseinmilden]

Hmmmm!   Your case sounds a bit similar to mine although I don't dare stop my injections now - I have just added in lots of cofactors to keep me metabolising the B12. 

I don't know and am guessing from my body's reactions but it sounds like you might be low in folate and might not have enough methyl group molecules and other cofactors to process the B12.

I'm already late this morning but please look up my profile and see my post "My Experiences"  for more information and let us know what cofactors, if any, you taking now? 

There is a good chance there will be someone on the Facebook support group that can help you more too. 

Looking forward to hearing back from you!   x 

[Gambit62 Administrator]

Do you have any contact with GP at all now or have you given up on them?  To be honest I think you would be well advised to see if you can get help from a doctor to check that there aren't other things going on.

The symptoms of B12d are very similar to a lot of other conditions so there could be other things going on.

The body uses B12 in conjunction with other vitamins and minerals so if you are trying to process a lot of B12 then it is easy to develop deficiencies in some of these other vitamins and minerals - as DenisinMilden says - and it can be quite difficult to get the balance right - especially with things like potassium where overdosing is possible.

A lot of B12 is try it and see so the things you can try are 

a) varying which form of B12 you use - try methyl and adenosyl B12 and see what they do.  These forms are more sensitive to heat and light than hydroxo which is one reason why they aren't the forms generally given.

I use a mix of hydroxo methyl and adenosyl and seem to need all three to cover all bases.  Some people find that methyl does little or nothing for them - helps me a bit with feeling in my left foot and with sleeping but these aren't my worst symptoms.

b) look at folate levels and other vitamin levels - lots of overlap with vit D deficiency.

c) try different methods of delivery - options are sublinguals - sprays and tablets, nasal sprays and skin patches - work for different people.

I find nasal sprays good option for me but use sublingual tabs for adenosyl.

The specific tests for PA are not very reliable and getting a negative result certainly doesn't rule it out as a possibility - but GPs do love to think that numbers are absolutes.

Blood levels after you have started receiving B12 shots don't mean a lot - they are bad enough as a guide to a deficiency but unless they stay low they really don't say a lot about what is really going on with B12.  B12 deficiency is not a blood disorder.  Lack of B12 in your blood will lead to a deficiency but it is also possible to have little or no B12 getting from your blood to the cells where it is needed (functional B12 deficiency) and a blood test for levels of B12 is going to tell you nothing about what is happening at the cell level.  There are a couple of tests - MMA and homocysteine - that can give a guide as to what may be going on at the cell level as the body needs B12 to process them back into useful products - but high levels can also be the result of other things going on so they aren't specific to B12 - just aids to clarify where there is a discordance between numbers and symptoms.

You are right to think that you were initially mistreated.

Potassium deficiency is generally considered to be a risk factor during the loading dose phase if someone has an anaemia.

[Sleepybunny]

Hi,

PAS

Have you talked to the PAS? Lifetime membership costs £20. In some cases they can intervene on behalf of members. They can probably at least point you to useful information. The website has a lot of  info including some that is aimed at medcial professionals. I think that the chair of the PAS might be interested in your story.

pernicious-anaemia-society.... 01656 769 717

Office open from 8am till 2pm every day except Sundays.

The chair of the PAS, Martyn Hooper has a blog that you may find interesting to look at. There may be stories of sufferers on there that are similar to yours.

martynhooper.com/

He has also published several books about PA and B12. I gave his latest book to my GPs "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Other UK B12 websites

b12deficiency.info/

b12d.org

UK b12 documents

Recent documents make it clear that people who are symptomatic should be treated even if B12 levels are normal range.

1)ukneqas-haematinics.org.uk/...

2)bmj.com/content/349/bmj.g5226

3) Google "BCSH Cobalamin and Folate Guidelines"

I gave a copy of the BCSH Cobalamin document to my GPs. I found page 8 and page 29 particularly useful.

B12 books

Besides Martyn Hooper's books, I found "Could It Be b12" by Sally Pacholok and JJ. Stuart very interesting to read.

Unhappy with treatment?

This link has ideas for writing to GPs etc if unhappy with treatment.

b12deficiency.info/b12-writ...

Copies of blood tests

Do you get copies of all your blood test results? I get copies of all mine as in past i was told results were normal and some of them weren't when I got copies. I look at folate, b12, full blood count(FBC) and ferritin. High MCV and high MCh on FBC can indicate the possibility of macrocytosis.

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

patient.info/doctor/folate-... Important Info in Management section

Hypokalalemia

patient.info/doctor/hypokal...

candidiasis

patient.info/doctor/candidi...

Hopefully your  GP can help with advice if you are prone to Candida?

"Coeliac disease was something that was looked into...but that never came up in a test either"

Coeliac disease

I have read that it is possible to have Coeliac disease even if Coeliac blood tests come back negative. If Coeliac type symptoms continue after a negative Coeliac blood test there are other tests/investaigations that a GP can order.

coeliac.org.uk/coeliac-dise...

coeliac.org.uk/coeliac-dise...

Coeliac UK  Helpline 0333 332 2033

I am not a medic just someone who has struggled to get a diagnosis.

[Polaris]

I'm so sorry you've had to go through all this Ceriane and at such a young age.  Unfortunately, it is such a common problem for sufferers to have to battle to get enough B12 at the start of neurological problems and find it hard to catch up once neurological symptoms have set in.

Many researchers believe leaky gut leading to autoimmune disease is at the bottom of it all - four in our family have autoimmune thyroid disease and B12 deficiency.

After years of medication for h/pylori, gastritis, IBS, reflux, etc. which depleted B12, I eventually found that avoiding gluten and eating daily spoonfuls of organic Sauerkraut (better than any other probiotic I've tried) has meant that all my digestive problems have virtually disappeared. Hopefully, this means the microvilli/little brushes in my gut are healing and enabling better absorption of B12. To be on the safe side though and to prevent neurological symptoms, I take Jarrows Methylcobalamin 5000 mcg SL, and this works for me.  

As you have had suspected coeliac disease and candida overgrowth,  it might be worth giving this a try, as well supplementing injections with high oral B12 and a good multivitamin/mineral. Sally Pachlok' "Could it be B12?", recommends covering all bases.

You probably already know that bananas, apricots, sultanas, etc. are high in potassium, so would be useful to snack on.  

I hope this helps and you feel better soon.

[pugdogs10]

My tests for coeliac disease was also negative although I had the symptoms fortunately the endocrinologist I was seeing at the time referred me to a gastroenterologist who diagnosed coeliac disease following a gastroscopy. I found out that the blood test for coeliac is only 90% accurate.

Also it was interesting Polaris in her reply mentioned sauerkraut for gut symptoms. I have read research recently which is saying that excess B12  can affect levels of good gut bacteria. It might be a good idea to use a type of B12 which is absorbed into the blood stream ie Boost or similar and try the sauerkraut (not sure if I spelled this right).

I wish you well and really hope you feel better soon.