Hi all! Having serious issues

Hi guys! The awesome people on thyroid uk recommended me to you.

I have hashimotos disease which is casuin all sorts of problems but I think my neruological symptoms are due to low B12. I'm having serious issues with memory, confusion, feel like I'm losing my mind, breathlesness and tinging that affects my whole body (especailly face) randomly. When I had my B12 checked while ago it was 242 but docs wouldn't do anythin because it's witin range so i started takin 1000 of B12 supplements which i sometimes take 2-3 a day. Had another B12 test couple of weeks back which showed it had gone upto around 340ish but my head symptoms are getting worse and worse and getting scared. What should I do?

Docs are won treat because it's "in range". I have completeley lost all faith in stupid doctors now! They are keeping me sick and causing real damage.

3 Replies

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  • Hi,

    I've assumed you're in the UK.

    My top tip would be to phone the PAS (Pernicious Anaemia society)

    pernicious-anaemia-society.... 01656 769467

    Have a look in the library section on PAS website.

    Other useful info

    b12deficiency.info/ good section on writing to your GP

    b12d.org/

    ukneqas-haematinics.org.uk/...

    This makes it clear that symptomatic pateints should be treated to avoid neuro damage.

    bmj.com/content/349/bmj.g5226

    Useful summary points.

    Google "BCSH Cobalamin and Folate guidelines"

    I'm struggling a bit today so unable to write more. Have a look at some of my other posts for more info and those of Gambit62 and Polaris and there are lots of other helpful people on this forum.

  • I'd just add that self supplementing with B12 can make it difficult to get a diagnosis as any further B12 tests will be affected by the supplementation.

  • As sleepybunny says supplementing will make it impossible to get a diagnosis.

    The serum B12 test is not a test where the figures are all that count.

    You could try to make them aware of this, eg by quoting the BCSH guidelines on cobalamin treatmet - summary

    bcshguidelines.com/document...

    Otherwise you could give up on ever getting a proper diagnosis and just start treating yoursel. B12 isn't toxic - though some people - generally with MTHFR mutations which affect ability to methylate some vitamins - can have problems.

    B12 deficiency - leaving out lack in diet - is caused by a malabsorption problem - of which there are many - though PA is the most well known. The mechanism for taking up B12 in your diet is very specialised and depends on the ileum (gastric surgery affecting the ileum is another cause of B12D). If something goes wrong here then 99% of your B12 absorption is gone..

    The body also recycles B12 very efficienty using the liver to store it and then passing it through bile into the ileum for reabsorption - so if you have an absorption problem this mechanism also breaks down - so a B12 deficiency can take a long to become obvious after the absorption problem occurs but if you are having neurological problems that implies that it is getting quite far advanced.

    One possibility is to flood the gut with B12 and hope that the other 1% of absorption works but this doesn't always work.

    Other possibilities are using other membrances to absorb the B12 - eg tongue (sublingual sprays and tablets), nose (sprays/drops) and skin (patches). However, these don't always work for people.

    The medical approach is injections into muscles - though subcutaneous injections can also be effective.

    Depending on where you are you won't necessarily be able to source injectible B12 in country - but other forms are generally available.

    Definitely no problem with taking 2-3 tablets a day but the implication from the lack of rise in your levels is that this isn't a very effective means of absorption in your case. I'd suggest that you try sprays (either nasal or tongue) at similar doses and see if that has any effect.

    People also respond differently to different forms of B12 - I find hydroxo is very good for my neuropsychiatric symptoms, but methyl and adenosyl work better with my neurological symptoms - but others will be completely different so that is something else to experiment with.

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