B12 low-ish, low-ish vit D negative anti-intrinsic factor. What next?

[LifeintheMed]

Hi there,

Just hoping to get some guidance on all this.

I have hashimoto's, recently diagnosed and my bloods came back showing low-ish B12 and low-ish Vit D. I've been tested for coeliac and anti-intrinsic factor and they're negative.

So, what now? I have a chat booked in with the endo in a week but I'd like to start supplementing as soon as I can after that. Are there recommended ways to supplement these vits? It seems like there's an absorption issue but it isn't obvious at this point what it is...

Symptom-wise, I'm not really aware of much - perhaps a bit tired and I have fairly ongoing slow digestion/constipation but I'm really active and I'd say I feel generally well.

So, questions to ask the doc; other possible causes of low vit B12 and how best to supplement are probably my questions!

Thanks!!

[Sleepybunny]

Hi,

It's possible to have PA even if IF test has a negative result.

See flowchart below.

stichtingb12tekort.nl/engli...

Thread about tests for PA/B12 deficiency

healthunlocked.com/pasoc/po...

Have you considered joining PAS (Pernicious Anaemia Society) if you suspect PA?

Membership is open to people worldwide and you do not need a confirmed PA diagnosis to join.

pernicious-anaemia-society....

B12info.com

Has lots of B12 info.

b12info.com/

Got to go out but will try to add more later.

[LifeintheMed in reply to Sleepybunny]

Thanks for this. If there is a negative antibody test though, is there another way to test for PA? Is it even important to establish it is conclusively PA? I guess I'm not sure whether one just focusses on the low B12 or tries to find the cause...

[Enuffisenuf in reply to LifeintheMed]

I have never been diagnosed, I started to self treat and new GP joined in. I've had no tests other than a B12 blood test, which was ignored.

[LifeintheMed in reply to Sleepybunny]

Also, could you point me to the best way to supplement if I'm not going down the injection route?

[FlipperTD in reply to LifeintheMed]

If your IFAb was negative, then you're in that group of around 50% of patients with PA. Some folks do eventually 'sero-convert' to positive, but if you have B12 deficiency whilst having a typical diet containing sufficient B12, then you may well have a problem with absorption.

If you're interested in history, the first effective treatment for PA involved eating significant amounts of liver. This isn't to everyone's taste, I must admit, but a hundred years ago, it worked. At that time, untreated PA was pernicious indeed; survival was typically 2 - 3 years at best.

If you can't absorb orally, then it might be worth considering if 'mega-dose' oral B12 would help. It does for some, and not for others. If not, then injections would probably be the best route but you should see a 'proper doctor' to advise you!

Best wishes, and good luck.

[LifeintheMed in reply to FlipperTD]

Thanks for the response. Yes I have a diet that includes animal products - plenty of them. I've considered the liver thing but don't feel super-motivated to eat a ton of liver pate!

I've seen people mention the sub-lingual B12, do you know if this is absorbed differently?

[FlipperTD in reply to LifeintheMed]

Sorry, I know some folks do seem to manage the sub-lingual approach but I can't see how it would be different from the oral route using 1mg tablets. I think there's plenty we know about this condition, but there's still a lot that we don't! I think the best bit of ancient research was William Bosworth Castle's experiment that showed the effect of 'normal human gastric juice'. If you don't know the story, you might want to look it up. I doubt that anyone would get Ethics Committee approval nowadays. As for the 'liver' diet, it was described as 'lightly cooked liver' [which to me sounds like 'warm' rather than 'cooked'.] There are tales [quite possibly apocryphal] that the 'liver' men, Minot and Murphy, were chased by dogs when carrying the liver. That has the ring of truth to it too!

I've stuck many needles into people, and had them do that to me, but I ended up doing daily cub-cutaneous injections on myself three years ago, for a good few weeks, and I tolerated it easily.

Good luck.