NDT journey

[Chelle2k34]

Hello..Has anyone had numb ankles and feet as well as wrists and hands.( I'm in danger of thinking everything is thyroid related) I'm on week 3 of just NDT and usual supplement. Feel very well, but still stiff.

[greygoose]

Have you had your B12 tested?

[foxglove in reply to greygoose]

Butting in!!! Just to thank you for reminding me to have B12 tested . Annual bloods/ health check due so will beg doc. - on bended knees if ness. for B12/folate test

[Marz in reply to foxglove]

foxglove - if you are supplementing B12 - then further testing is of little value - as results will be skewed. This is mentioned in the Guidelines of The Folate and B12 Deficiency Guidelines.

[foxglove in reply to Marz]

I know about the skewed result if taking B12,, it is a few years since I last had B12 tested and was within range but just below the halfway mark (can't remember what) . I'm really just curious to see if B12 does come up with using oral spray. Not really interested in folate - don't think many have low, and also think it is only if one has PA that low b12 matters. Not the opinion of most but I very rarely follow the herd. Sorry if I've given you trouble, I also pay little attentions to guidelines!

[Marz in reply to foxglove]

I see you are also a member of the PAS forum so you will have read no doubt how important Folate is as it works with B12 in the body and enables the B12 to remain a little longer before being expelled. Synchronicity at work.

I have to disagree with you about B12 not being important unless you have PA - I had my Terminal Ileum and further surgeries having suffered ileo-caecal TB in my 20's and later Crohns. It is the area where B12 is metabolised in the body - and so I live with the consequences. Should you care to read - Could it Be B12 ? - by Sally Pacholok - you will read of cases similar to mine. I now have regular/weekly B12 injections in the hope that I can repair the myelin damage that caused such serious symptoms/damage in my body.

No need to pay attention to Guidelines unless yo are struggling for a diagnosis - as many are on this forum and the PAS one. Communication and reasoned discussion has to start somewhere.

Perhaps your B12 spray contains Folic Acid - some do

When you receive your B12 result do remember that only 20% of that result is available to travel and enter the cells where it is needed. Hence the need for levels to be around 1000.

[foxglove in reply to Marz]

Thanks for reply and details about your health problems - sorry , I keep forgetting that compared with a lot on HU, regardless of which form, I'm comparatively unscathed and have got to be careful not to over analyse or indeed over imagine...me that is not you

Keep well and enjoy the rest of today

p.s. As in a lot of cases think we have to agree to differ. Wouldn't do if we all believed the same but doesn't mean we can't be friends

[Chelle2k34]

Good morning...I did in May results were 467(range 110_914.0) I came off Levo as I had very little improvement especially with brain fog. Week 3 on NDT and already feel like I have clarity mentally, it's just this numbness that's new. Still very very achy thought. Thanks for response

[Marz in reply to Chelle2k34]

Chelle2k34 - you can experience neurological symptoms with a result below 500. Symptoms well precede any changes in the blood - as mentioned on a regular basis on the PAS forum.

Low B12 is a neurological condition and NOT a vitamin deficiency.

Only 20% of your B12 result reaches the cells where it is needed - just the transcobalamin - hence the result needs to be around 1000.

[greygoose in reply to Chelle2k34]

Chelle, I only saw this by chance. If you don't click on the green reply button under the post you're replying to, the person will not know you have replied.

Your B12 is too low, as Marz says. If I were you, I would supplement with 1000 mcg sublingual methylcobalamin (B12) daily. With that, take a B complex, with methylfolate (not folic acid) to keep your Bs balanced.

[MariLiz]

I was going to suggest a B12 test, the same as greygoose . Might it be worth supplementing it for a few weeks to see if you get any noticeable change in the numbness and stiffness?

[greygoose in reply to MariLiz]

No, it wouldn't be worth supplementing it for a few weeks, because then yyou wouldn't be able to get it tested, the results would be skewed. Always test first, before taking, for vit D, vit B12, folate and ferritin.

[foxglove]

Interesting post, I have had numb ankles/feet (also a bit in lower legs) I have been on meds. for PHN (after shingles pain) and for OAB. Been taken these for some time but decided not really helping so have tapered off. Also using Better You Boost B12 spray and think numbness is not so bad . Coincidence? - perhaps, maybe it's just something that limits itself.