Could it be B9?!

Sitting here with pins & needles gradually spreading all over my body after deciding to have a day off all meds before my first neurologist appointment first thing tomorrow & have come to the realisation that my problem might not be functional B12 deficiency but B9 deficiency!

Symptoms are similar but life long tinnitus is listed as more B9 than B12, along with pins & needles. When I was first diagnosed last July it was 5ng/ml [4-20] but has risen to off range as I've been supplementing, however my red blood cell count started off at 4.68 [4.5-5.5] in July, 4.45 in Aug, started SI daily in Sept, 4.74 in Jan, then 4.58 in March. Cos I didn't get on well with folic acid I started off supplementing 5mg methylfolate which was recommended for alternate day injections but it didn't really do it for me so I upped it to 10mg daily however recently it's caused more anxiety & short temperedness.

So now I'm worried on two fronts - by doing this have I increased the potential for permanent damage, and what next - maybe I did only need alternate day injections or less & lower methylfolate in order not to get anxiety!

Tomorrow's appointment will be interesting, wonder if they know anything... not holding my breath lol!

[Hidden]

...could be both I guess...

[Joanneconnor]

I have low b9 and I am taking folic acid, I have what feels like carpel tunnel, similar to pins and needles, mostly when I wake up in the morning. But my b12 should be over 500 with hypothyroid it is 375 which is in range but really low

[Hidden in reply to Joanneconnor]

The pins & needles in my feet are pretty much 24/7 but spread when I tried swapping from methylfolate to folinic acid then folic acid and within a couple of days it felt like I was in a jumpsuit of pins and needles - thought it was the folic acid causing it but realise due to my inability to convert folic acid it was just that I wasn't having any.

Doc would only test my TSH so I got a thyroid check plus from medichecks before Xmas and feedback from forums was all OK but should try to increase my t3 a bit.

My B12 will be sky high as I've injected daily since September apart from today, 288 injections so far but have always had a hunch I had to do that many just to keep up with the amount of B9 I was taking.

I dunno, it's all very confusing but when NHS wouldn't treat me according to their own guidelines and I could hardly stand up or speak I had no choice but to self inject & glad I did otherwise would be much worse!

Right, better get some kip, early start tomorrow for neuro appt!

[Joanneconnor in reply to Hidden]

You get your injections off nhs? Or Internet?

[Hidden in reply to Joanneconnor]

NHS, the ones who left me to rot? Hah! No, I get them from German chemist versandapo, using the medium of the internet.

[Hidden]

Pins & needles don't seem to be spreading as much as they did when I tried the folinic & folic acid but it's only been 24h, guess will see how it goes tomorrow. At least the anxiety isn't there / as much when I don't take the methylfolate!

[Joanneconnor in reply to Hidden]

Why do you take so many different types? Do you feel better now your b12 was low, what were your symptoms

[Hidden in reply to Joanneconnor]

I took folic acid to start as that was advised as a cofactor for B12 to work, however I quickly suffered from dark brown spots on my lips and felt unwell. On my hunch of my MTHFR/MTRR/etc. genes I tried methylfolate and that worked a lot better, but recently it's caused me much anxiety and short-temperedness so I thought perhaps now I've cleaned up my diet a bit giving up gluten again perhaps the folic acid or folinic acid would work, and they're a lot cheaper. Sufficed to say they didn't. I'm taking a break from all supplements at the moment, see how things go.

I'm a whole load better than I was before I started self-injecting last September - that's the trouble when you go an see someone once you've done the fixes. Only a few weeks ago I couldn't pack shopping bags without freaking out, brain couldn't handle it. I couldn't hold a conversation with someone, couldn't process the words quickly enough. It's a lot better now, not 100%. But compared to before when I couldn't stand up, and the three years practically bedridden then yes, I'm a whole load better!

[Gambit62 Administrator]

folate and B12 are used together in a number of key processes which is why symptoms of the two overlap.

However, folate deficiency tends to have a shorter period for onset because it isn't stored in the same way that B12 is so levels are much more responsive to diet.

[Hidden in reply to Gambit62]

Thanks, well I've been eating practically nothing apart from salads and steamed veg for the last 6 months. Neurologist said I was perfectly fine but booked me to see an endocrinologist so I'm sure that'll be as useful as he was.

[Kidsmomof9]

Have you looked into thiamine deficiency? I have neuropathy in my feet all the time and it is permanent but now I am getting thiamine infusions. I was diagnosed with pernicious anemia along with Wernicke's Encephalopathy (non alcohol related), a severe thiamine or B1 deficiency. Just a thought...

[Hidden in reply to Kidsmomof9]

No but I have been supplementing it, 100mg daily since I stopped taking my B Complex in Jan because I was taking 2 x daily of the Thorne B Complex which gave me 20mg of B6 and I ended up with B6 toxicity, the minute I stopped a lot of the paranoia stopped. So I bought all my B vitamins separately.

Recently I heard B1 is good to take more so upped it to two tablets a day, morning & lunch, however I stopped taking all supplements a day ago cos I thought there was no point turning up at the neurologist appointment this morning all perfect - am doing OK so far, still got pins & needles in feet but according to the neurologist I'm perfectly fine.

He asked if I wanted to be referred to an endocrinologist so I just said yes, I'll ask them when I get an appointment sometime this century or the next.

[Foggyme Administrator]

Stevepurkis. 10mg of methylfolate is a hugh dose and you have folate levels that are way over the top of the range (unmeasurable).

You may have symptoms of over supplementation with methylfolate...suggest you google and check what the symptoms are (sorry, not enough time to do for you).

High doses folate are not necessary as routine when injecting B12 every day - only required in the presence of confirmed folate deficiency. Maintenance doses of folate / folic acid are usually around 200-400mcg - and not everyone needs that.

Pleased to see in one of your replies that you’ve stopped taking both multi vitamins and Bcomplex (double dosing on B6)...so indeed, you could well have had B6 neuro-toxicity!

Suggest you stop all methylfolate and monitor effects.

👍

[Hidden in reply to Foggyme]

Hiya! Yeah, I figured that one out, I remember yourself or someone else from here mentioning the 'other' group were keen on high doses of folic acid. I went up from 5 to 10 cos I felt it kept wearing off so was injecting more but realise I was injecting B12 to keep up with the folate lol.

At the moment I've stopped taking everything including injections and going to see what happens, I think I've done enough B12 to get past the major issues and am a whole load better than I was, no more bedbound - still not running around the place but awake for a whole day apart from the post-lunch slump.

So far it's day 2 and the only thing is the pins & needles in feet (which according to the neurologist is fine) and a bit of brain fog but will probably take me a while to get used to not supplementing lots daily!

Am off to the doc tomorrow, going to see if they'll test me properly for coeliac, I think that's the issue but hear you have to be eating gluten for six weeks to be tested which might cause an issue cos last time I ate bread it made me throw up.

[Foggyme Administrator in reply to Hidden]

Yes...you have to be eating gluten to be tested for coeliac disease 😖.

Please to hear that overall you're doing better.

Suggest that you re-introduce B12 if things get worse now that you've stopped 'everything' and see if symtpoms improve. May be that over-supplementation was causing issues and the what you now need to do is work out what frequency of B12 you need to keep symptoms at bay (or as much as possible, at bay)...assuming you've reached the no further improvement stage?

If not, suggest you continue with 1mg B12 every other day...until no further improvement 😉.

Good luck 👍

[Hidden in reply to Foggyme]

I heard the biopsy can be done without having eaten gluten for a while but they won't send you for that unless you've done the test first, I'll ask tomorrow at the doc.

I will inject if things get worse - as for no further improvement I think it's a bit hard to tell, I'm on the 'other' day today and things seem OK, am off up to my mum's tomorrow to show her lots of B12 info so will see how the change of scenery goes, in one way it's a bit more hectic there but it's pretty toxic here with disappointed dad

Making a break Wednesday to do some more biz-related stuff so as I build my business up again that'll help for sure.

Thanks again for all your great help!

[Foggyme Administrator in reply to Hidden]

Good luck...hope all goes well with mum.

[Hidden in reply to Foggyme]

thanks - one quick last Q - is 48 hours some magic figure for B12 then? Am getting the afternoon slump & brain fog a bit, considering breaking the fast & doing a jab

[Foggyme Administrator in reply to Hidden]

Assume you mean the every other day 'thingy'? No, no magic number - different frequencies work for different people.

Advised as the intensive regime based on getting high doses of B12 into the body, balanced against the excess B12 that's excreted in urine.

Some need more frequent injections, some less...it's very much an individual thing. A case of having to work out what frequency works for your individual body, and then go with that.

I was originally on every other day. Now on weekly (with an occasional extra) and that seeems to work for me.

👍

[Hidden in reply to Foggyme]

Thanks, I just broke my fast & feel a bit more alive now! So as I've only 10mg methylfolate capsules I won't take them any more, no funds to get any smaller amounts though, and do eat a fair amount of good stuff - salads at lunch and always greens for dinner.

[MaryWarnecke]

I started taking a bcomplex and extra niacin and I feel much more calm.

[Polaris in reply to MaryWarnecke]

Dr Sarah Myhill in her book on CFS/ME recommends Thiamine (vitamin B1) for fatigue support - 600 milligrams per day. Many of her patients have reported huge relief from fatigue with thiamine, saying it has changed their lives.

[Hidden in reply to Polaris]

Thanks - I literally just got the kindle version half an hour ago! I've been taking 100mg twice per day, looks like I need to up it!

[Polaris in reply to Hidden]

Sorry, I think I got a bit mixed up as had been looking up something in Dr Myhill's book - it was actually Dr Izabella Wentz who mentioned Thiamine on her Webonaire on Hashimoto's yesterday.

I hope it works for you - I'm going to try it - will add to the cupboardful of supplements I forget to take 😀

[Hidden in reply to Polaris]

Hah no worries, given me another name to look up - Dr Izabella Wentz!

Watched Dr Myhill's great interview on The Energy Blueprint again yesterday, this time with my mother, going through all the stuff with her now - did the B12 video the day before - she cried at the bloke who was pretty much paralysed wearing nappies. I've just been through her list of medications and, to me, they all point towards B12 but then I'm biased - going to get her doc to test thyroid properly as it's just over the top of the range but they said they'd test again in a month, that's not good enough. Her ferritin is double the top of the range too!

Also going to ask for MMA & Homocysteine and the full blood count which they failed to do last time. Her B12 is 678 which is quite high for a 77 year old who has all the signs of CFS & B12 but also realise thyroid is similar. Everything is linked as Myhill says (in between her "ummms" Also first google result I got for B12 and high platelet levels was a guy who had normal serum but low active.

It's like a magical mystery tour... Myhill's so right when she says about NHS just giving pills and potions to sort issues and not look at the root cause. Diet FTW!!!

I'll stop rambling now...

[Polaris in reply to Hidden]

I have Kindle version and her book but I don't think I've seen the Energy Blueprint so will look for that, thank you. She certainly knows her stuff. Have a sample of 'Sustainable Medicine' on Kindle - excellent - almost a book in itself !

Your mum might enjoy the film of how Sally Pacholok came to write her book too if you've not already seen it.

If I remember rightly, the doctor in the video turned out to have very low B12 and high MMA before they finally discovered his neurological damage was B12def. so good luck for further testing.

[Hidden in reply to Polaris]

I just looked on Amazon and the hardback is £13.99, kindle £19.49!!!

There's a few more videos on the b12deficiency.info/films/ page - is the 2 part interview with Sally the one you're referring to?

The video I was referring to, the Energy Blueprint (he does a lot of interesting interviews so worth subbing to!) is:

youtube.com/watch?v=efw2zFO...(Not working as expected?)

[Polaris in reply to Hidden]

Thanks for the Dr Myhill video Steve.

Here's the Sally Pacholok fillm :

youtu.be/OvMxJ6GRBNQ(Not working as expected?)

[Polaris in reply to Polaris]

PS I made notes of the webinaire that, I imagine would equally apply to PA/B12def. :

NUTRIENT DEFICIENCIES that go along with Hashimoto's - need to be in the optimal range:

Vitamin B12 - (optimal range for energy 700/800 pg/ml. (Range 200-900 pg/ml.

*Folate (Methylfolate best as, if you have MTHFR gene, folic acid is not well absorbed.

Ferritin - def. causes shortness of breath, insomnia - optimal range 90-110 no/ml

Vitamin D - for energy - optimal range 60-80

Zinc - optimal range 70-90 up - deficiency impairs wound healing.

Selenium - 200-400 mcg per day - reduces thyroid antibodies and anxiety.

Thiamine (vitamin B1) - fatigue support - 600 milligrams per day. Many have reported huge relief from fatigue with thiamine, saying it has changed their lives.

Magnesium Citrate or magnesium glycinate - 1-2 tabs before bedtime - relaxes, relieves headaches p, period cramps, muscle aches, etc.

.........

Balance blood sugar

[Hidden in reply to Polaris]

Awesome thanks!

[Hidden in reply to Polaris]

Having just been through the list of medications my mum's taking for high blood pressure & other stuff lots of the side effects of those are tiredness so I'm sure they don't help. Along with all the soy, dairy, gluten...

[Hidden in reply to Hidden]

...and carbs

[Saya85]

Hi Steve- have just read most of your thread so far

You say somewhere you’ve been on diet of veg and salad for 6months plus.

You will almost certainly be deficient in folate and b12 then... so although you’ve come off all supplements I imagine you’ll feel the effects pretty quickly.

If you are not veg for any other reason than health I would suggest adding chicken liver /animal sources of both to your diet and see if you still need supplementation post that (assuming you haven’t been diagnosed with PA)

Your diet is likely making you deficient

[Hidden in reply to Saya85]

Hiya, well it's not quite that strict, what I meant was I went from eating meat twice a day and gluten to no gluten and meat a few times a week. I'm still having Sunday lunches, and still having ribs once a week that I cook myself. So getting plenty of nutrients!