This isn’t really of interest to others but I’m just so excited. 😊
My latest homocysteine results were just uploaded and after 8 years of having severely high homocysteine (untested before so assumed to be high for a very long time ), as well as two scary TIA’s, my homocysteine has finally come down!!
Not only has it just come down, but It is now in perfect range !!
That’s after 2.5 months of high dose b12 (methylcobalamin) injections, active folate and medications for Gastroparesis.
Even though the reversing out symptoms have been hard to deal with, I’m so happy about the homocysteine. I just wish they had tested me for AG/PA long ago.
Yay for b12 injections 🎉
Written by
Perniciousgirl
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this is extremely interesting to me and exciting for you ..I’m waiting for my results of homocysteine to see if I need b12 …the repercussions from it being high is a worry …it’s fantastic for you
forgot to ask how long to get your results …possibly different parts country and N.H.S. / private all different but I’ve been waiting 12 days so far including weekends …it’s my last test I’m waiting on thankyou
Yippee! Now the only battle is to make sure you get B12 injections often enough for the rest of your life. Very best wishes! It is so nice to hear some good news.
Thank you. 😊Yes for sure. My dr’s ( both gp and specialist endocrinologist) are very willing to prescribe whatever dose and monitor with bloods regularly which I’m grateful for.
Thank you. I saw a specialist endocrinologist 8 years who tested me for the MTHFR mutation and from that result, tested homocysteine. And we have been testing regularly since then because we have been trying numerous things to bring it down. When I see my gp in between specialist check-ups, he always requests it with my bloods too. In South Africa, if I ask for a test to be done, the dr’s are very willing to listen and order it ( I guess because it’s private medical care).
I hope you can get it tested if it is something you are worried about. 🤞🏼
The wait and the reversing out can make you question whether you are on the right track, which can be disheartening. Glad you stuck with it and are now starting to get the benefits.
Make sure monitoring continues. Ferritin, folate , vitamin D and thyroid can all be affected - as well as homocysteine.
Early days yet perhaps, but how are symptoms doing now ?
Thank you. I will certainly keep checking those, thanks.
For sure, I was feeling very despondent, especially after the first blood test ( only after 1 month of injections) and although it had come down, it was still in the severe range. So I’m feeling like the reversing out has been worth it, and I am feeling improved the last few days- with less pain & slightly less fatigue and improved sleep.
I can still remember when a trip to the supermarket cost me 3 hours nap straight afterwards. Now, it just means I sometimes start yawning in the checkout queue so loudly, it turns heads - not worried about that !
It can take a while. Soon enough, a "blip" in your progress will often just signify a temporary set-back - and not necessarily a devastating regression.
Well done! High homocysteine destroys our health and sets us up for Alzheimer's and heart troubles later on. Your levels went down really quick. It took me 4 years, it was very stubborn. I am at an 8 now, which is borderline. I still have high MCHC's, MCV's and MCH, enlarged red blood cells. Hope my homocysteine levels are even lower when I have my next test.
Gosh that is a long time , I hope your new bloods show much better results with homocysteine and your anemia
I have been trying for 8 years to bring it down actually with all sorts of different treatments and supplements, but I think only after I got my AG/PA diagnosis and the gastroparesis diagnosis, did the treatment become suitable for me with the high dose injections etc
First month homocysteine went down to 35. After 2.5 months it’s down to 5. Over the last 8 years it was never lower than 35 and mostly much higher
I think the combo of methylcobalamin ( not cyancobalamin) every 3 days (6mg over 1 week for several weeks which is very high compared to some people) and now 1.5mg per week split in 3 doses, as well as high dose active folate and not folic acid, and the addition of the Gastroparesis meds so food isn't staying in me too long, did the trick.
I also doubled my Vit D and added ferritin but I'm unsure if those impacted it or not.
So interested to hear your journey. I have to confess that your experience is completely new to me and I have never heard of checking homocysteine levels. The wonder of this forum is finding new information every day along with the benefit of other people's valuable experiences. I wish you well with your ongoing recovery and many thanks for sharing this information. I now have another blood test request for my GP!! Best wishes.
Just for information, homocysteine testing is a good thing to do and can be very useful, but as with all the other B12- related testing, it can be within normal range and you still have a treatable deficiency. As I found out!! Cheers
Many thanks for your information. I now appreciate that these results have limitations. Thank you. I have been having B12 injections for quite some time now but it is always good to check other factors to see if they have a role on this challenging road to recovery.
Absolutely! It never seems to be only a single deficiency in isolation and always worth checking that as many basic processes are working well as we are able to do. Best wishes
Too right! It always seems so complicated and I keep finding new things to check, read about or investigate. On occasions it really does feel never ending. Wishing you good health too.
Great news, well done. I have been injecting for 18mths, never had my homocysteine checked but did late last year. It too was optimal, 7.9. Although I don’t know whether it had been high, it was reassuring even so. 🙂🙏
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High homocysteine destroys our health and sets us up for Alzheimer's and heart troubles later on. Your levels went down really quick. It took me 4 years, it was very stubborn. I am at an 8 now, which is borderline. I still have high MCHC's, MCV's and MCH, enlarged red blood cells. Hope my homocysteine levels are even lower when I have my next test. 
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