Pernicious Anaemia Society

High Homocysteine levels


Mine is a bit of a long story so hope this is ok.

I am 58 I had my gallbladder out in 2013 before that I thought I was eating not to bad but obviously I wasn’t.

I had lots of gallstones, I got pancaraties and that’s how I knew I had a problem with gallstones.

Anyway I got diagnosed with fibromyalgia in 2009 and ME before my gallbladder in 2013. A few months ago I volunteered for some research into ME, I had a blood test done and urine test in late October, I had changed what I was eating after gallbladder out and was eating more for veggie as I cut out some meat and eggs and stopped having caffeine.

I didn’t know my Homocysteine level was checked or what it even was but it came back high and that I was very deficient in B Vitamins and B6 and other ones. I only got results in December, two weeks I stopped by CQ 10 and my B6 spray and my multivitamins and my B12 spray as I told my doctors about the results and they said my bloods was normal and B12 as well but it’s only normal because of what I was taking so the nurse practitioner said to stop my vitamins for now and when all out of my system they would do a panel of bloods when all cleared out.

I now have shingles on top of everything but I was wondering how long it takes for all vitamins out of your body to clear? and I am taking an anti viral for the shingles so would this effect the blood tests or not? I have stopped taking my multivitamins and B12 spray it’s two weeks now so I’ve i stopped.could I have the Intrinsic Factor antibody, Parietal cell antibody and MMA done now? Or not? as I don’t know if you have to wait to have the multivitamins and B12 out of your system as going to ask the doctor to see if I have pernicious Anaemia.

Thank you.

Thank you.

11 Replies

I’m not sure about the rest of the vitamins but understand you need to be off vit b12 for 8 weeks before retesting.

I hope it helps


starfish - depends upon the test - for most its 3 - 6 months - IFA is much less and 2 weeks would be okay for that test.

Julie, were you using the B12 spray when you had the original test? homocysteine can be raised by deficiencies in Folate (B9) and B12 (not sure about B6).

Gallblader operation is something that may have affected the ileum and if it has done then that would explain the b12 problems -

IFA is a bit of a flaky test - and a negative is a long way from proving that you don't have B12

I'm afraid I have to run and can't give a detailed answer now but it does sound as if B12 is likely to be an issue but getting GP to recognise that is likely to be very difficult. Do you have/could you get a copy of the exact test results along with ranges?


Ps please look through the pinned posts -


Manuka honey on shingles works really well apparently.

Fibromyalgia is a symptom, not a diagnosis.

It’s all about finding the root cause, your dr is not trying to find it, they just attempt to put sticking plasters on. Your dr is not helping you.

Have you been diagnosed with hypothyroidism?

ME is diagnosed after seeing thyroid bloods are ok - in the UK the TSH needs to be above 10! Many people are hypothyroid and their TSH never gets anywhere near to 10.

I would ask your doctor to test your thyroid antibodies, free t4, free t4 and ferritin, folate, B12, vitamin d. You can have them tested privately. Your B12 needs to be at least 500!

Getting yourself well is about reading, researching, starting with good gut health, reducing toxins like prescription drugs, fluoride and hundreds more so that the liver isn’t overloaded. I have learnt so much on my journey and to start with 12 years ago I just wanted a thyroid pill.

I can recommend books, websites etc to start with.



I agree with Sue above. Gall bladder issues are linked to low Thyroid - as are some of your other symptoms. You need the FULL thyroid profile tested and not just the TSH .... happy to help 😊

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I only know about my family and lack of gallbladders. I had mine removed in 2006 I was never overweight and it was chock full of calcium stones I was out the same day and I was the oldest person on the ward.

I had always ate a very healthy diet I believe that it was auto immune like my lack of a thyroid now since 2015.

I don't know anything regarding what you a taking, sorry I don't have any of your problems.

I hope that you received good advice and soon recover.


I forgot to say that you need to look after you liver which is important. I take Milk Thistle. Cut down to one small glass of wine per week and never have ice or cold drinks from the fridge, it all helps


Wow someone talking about homocysteine........I don't have any asorbtion problems so according to my gp do not have pa but he could not understand why my b12 was low.........this was 2 years ago. Due to having nerve damage he gave me injections which for a while improved my health. I had a gene test done as I was suspicious that my mum, grandmother, and daughter had the same problem. .this came back with many faults that caused high homocysteine showed it to Gp who said loads of rubbish. One year ago I was exhausted and due to gp saying there was nothing wrong and I had to accept that this was just me I gave up on NHS and went private. After seeing an endo and then going to a sleep clinic I was diagnosed with hypersomnia and given amphetamins to keep me awake. When I told my son he said "mum you need to watch doctor in the house series 2 episode 2 about a chap like you exhausted and doctor had no idea about homocysteine. (On you tube)

It was a revelation about doctors ignorance of homocysteine and just how it is now being recognised and the problems it can cause.

Homocysteine is a waste by product produced when the malathion cycle is not function with b12 and folate at cellular level and is toxic.

Under a private Gp I came off b12 injections and started high dose oral b12 tablets plus other b vitamins and on day 5 felt better than I had in years. For me it was not possible to have the homocysteine blood test as I had had b12 injections and they would squeaw the results but my daughters was very high and had a miraculous improvement in health once the homocysteine levels had dropped.

Doctors are not trained about homocysteine and the damage it causes but my gp who trains doctors to be gps has now added this to his training plans as he has seen the difference it has made to several aspects of my health including .....lowering of.high blood pressure and high cholesterol.


Homocysteine has an interesting history. When they were exploring blocked arteries looking for the cause - back in the 60's I believe - they found not only cholesterol but also Homocysteine. Both naturally occurring in the body. Statins were on the horizon and so the Homocysteine research was well and truly dumped as it only required vitamins and some Betaine HCL to lower the level - so no financial gain for Big Pharma. It is now coming back into fashion in that it is being talked about more but sadly still not a routine test on the NHS.

I live in Crete and had mine tested way back in around 2005 - no-one batted an eyelid at the Clinic - seems pretty routine here. Also Homocysteine is a predictor of heart issues and strokes if raised. When Homocysteine reduces so it seems does the cholesterol. Mine did :-) I have read that single figures is the desired level for safety.

It seems that the tests that help us on our journey to wellness are ignored by the NHS - so many have to be requested by the patient ....


Thank you for the added information which I did know and others may find helpful.......the last few months journey into homocysteine discovery has enlightened my family in ways Doctors never could as it is responsible for so many things. Particularly with regard to my daughters blood clotting problems which have improved now the homocysteine has been lowered and after years of infertility that no doctor could explain the knowledge we have gained about raised homocysteine has given her an explanation ....onward to better health!

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I have had my gallbladder out too, and have hypothyroidism. My problems with a B12 deficiency may have started then. It's really complicated. But, I hear you, even if I don't have all the answers.

I may have H-Pylori and am going to get that tested tomorrow. If I have that I'll deal with it and continue to correct absorption problems.

I also hear you about the shingles, and I also took the antiviral.

Since I don't have the MYHFR gene, it's back to green smoothies and more leafy greens in my diet. I think you're doing good by making the changes you have. Gambit has great advice I think.

I'm not a dr. and each of us has our own journey to health. The best to you on yours.



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