Happy update for a change

thanks to all who gave me support when I have been complaining of fatigue and excessive sleepiness. So far this year I have seen an endo who has believed me and looked out of the box and tested for other things, all came back negative. Then I went to a sleep clinic and again negative for sleep apnea but the sleep clinic consultant diagnosed hypersomnia (excessive sleeping up to 18 hours a day I could have told him that ) and wanted to give me a drug similar to amphetamins with lots of awful side effects which I refused. Thinking my gp was right and I have just got to accept this is me and at least I am not in pain.

I was sorting to change from t4 to ndt when my son phoned saying " mum you must watch Doctor in the house series 2episode2 about a man with chronic fatigue, it's just like you".

After many different test the doctor had discovered the man had high homocysteine levels..........I know I am pre dispositions to this as I had a gene test last year when I was put on b12 injections and felt great for 3 months and was suspicious my mum and daughter had b12 problems and wanted answers.

Then by chance the endo phoned me saying as all tests had come back negative he was willing to prescribe ndt....WOW.....but I've not started it yet

I told him about the homocysteine and he said like most doctors he did not know enough about it but thought the b12 injections I was having every 2 months would be enough to get eliminated but it would not hurt to try the extra b vitamins as my body would eliminate excess.

I researched what was taken in program ( he improved after a few days) and started taking a cocktail of b2, b6, b9, and b12 and waited hoping for an improvement.

On the 5 th day I did not sleep at all and now on day 9 I am wide awake for the first time in years.

just hoping it continues.........so happy today that I had to share!

17 Replies
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Great news! I hope it continues for you :-)

Yes it is so sad that homocysteine is so rarely tested and yet when raised it can indicate B12 deficiency at a cellular level when serum B13 tests say all is well.

When they were researching plaque and blocked arteries - they found homocysteine as well as cholesterol - back in the 60's - but as statin production was underway the positive Homocysteine research was hidden from sight - and yet it is a better predictor of heart and stroke issues. Only B12 and a B Complex are needed so you cannot patent a vitamin so no money to be made.

Sad that Docs are not able to suggest the simple tests and solutions so we have to discover them for ourselves.

Glad you are better. ☺☺

That makes sense, all I know is I feel alive for the first time in years......thank you

Marz how insightful this is and Margo might find this info of interest with her current cholesterol post. πŸ˜€

Auntyp62 you must be thrilled 😊 hope the good news and wellness you are enjoying continue πŸ’

My cholesterol is very high even though I eat the same low fat diet as my husband and his is very low

Well that just shows, doesn't it. I had no idea that B12 was also linked to impact on cholesterol levels. Even more reason to stay off statins 😊

Ever more I think why oh why!

I think it's the high homocysteine effect which can be reduced with b vitamins that causes the high cholesterol ......will check mine in 3 months and see if there is a difference

I'll look out for the update, that will be interesting 😊

Over 85% of cholesterol is produced in the liver - nothing to do with foods. It is there for a reason as cholesterol is involved in many processes within the body - especially the production of all hormones and VitD.

The brain is made up of cholesterol - over 25% - so with 7 million on statins in the UK it is no wonder brain issues are on the rise.

You need GOOD fats in your diet ..... as your Homocysteine reduces so will the cholesterol 😊

High homocysteine levels are not good. This is a link and it is amazing doctors know so little.

This is a previous post I did.


Don't suppose you have any info on how long to stay on these high b vitamins........is there a maintenance dose when homocysteine is lowered or do you just keep taking a high dose forever??? Can't find any info on maintenance on internet

I personally think B12 and the Complex is for life. I have B12 injections as I do not have a Terminal Ileum where B12 is metabolised. When you think how many people have gut issues - no wonder B12 deficiency is at epidemic levels .....

B12 is also linked to brain shrinkage .....

shaws never before have I seen how easy it is to miss some of the detail ...... I have just reread your post, which I replied to😞 and low and behold the link with cholesterol is mentioned! I was just fixed on the link with dementia and completely missed the other info.

Good to reread stuff, thank you for posting again 😊

I live in Crete and was diagnosed here with Hashimotos in 2005. My cholesterol was slightly raised as was the Homocysteine. Both reduced naturally with thyroid treatment - B12 - B Complex. I have often mentioned Homocysteine in posts here over the years - but rarely see it mentioned/tested 😊

Thanks Marz I now see how important it is in relation to cholesterol.

Ha! And we've been told for years about how we all eat too much red meat!.

I realise too how blinkered /fuddled my brain was a few months ago! I would wrongly have sworn never to have seen anything about it! No inference meant to those that gave mentioned, I just missed it!

Now that it's on my radar I may well see if I can get a test if only for a baseline of where I'm at now.

Great book by Dr Malcolm Kendrick - The Great Cholesterol Con . I may have added the great 😊😊

Also lots of him on YouTube too ....

It's so very exciting and thank you for sharing your great news . SHARING IS CARING . This GREAT FORUM is genuinely a very informative and sharing and caring forum . We are all in this together navigating in the same journey . It really makes us feel we are not alone in this not so easy journey .

Best wishes as you proceed .

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