mma test

[StRaphael]

hello, new here I’ll try to be brief.

Husband dx PA about 6 years ago. Had injections weekly until B12 was in normal range than monthly injections. About 4 years ago due to insurance Dr had him switch to 1000 methyl chewable daily no more shots. B12 tested Annually and b12 blood test have shown normal levels while on orals. Husband has very weak legs and hands not functioning 100 percent since May, twitches since last October.

At our insistence Dr has just ordered an mma test, but now I’m wondering if that is necessary since Dr already knows he has PA. Dr just refusing to go back to shots bc blood test are within normal range so he feels sublingual doing there job and no b12 issue.

Any advise for mma or next step to confirm or rule out functional deficiency?? Is mma correct test at this point?

Also he never stops the sublingual before blood work (would that affect the annual blood results?)

TIA

[Jo5454]

Hi, really sorry your hubby is being treated so badly. As many other members will.no doubt explain in greater detail, those with PA need injections as they're usually unable to absorb tablets.The MMA test could be useful if it returns high & be counted as evidence in the fact that it can raise if inadequate b12 . On other hand it can return normal but yr hubby will still have a need for b12 injections!

I had considered normal b12 in serum in 200's, but Active b12 was low range, referred for MMA & that was very high so considered a functional deficiency.

During covid I swopped to sublinguals,but active b12 gradually lowered, I put a lot of diminishing health onto other conditions.

Earlier this yr, was very poorly again, neurobsymptoms back, plus exhausted, nauseous, vision issues, etc.

On testing b12 serum was 608, unsure of Active b12 as Dr had said he'd test, I started injections, lab refused to test,but I do know in November it was around 80, & mma last Autumn was still.in range. My mch was overange though.

So just goes to show, numbers really mean diddly squat if the symptoms are still there

it's those that need listening to.

I don't know how long it would've taken for my serum level to fit into the NHS box, maybe never, but I do know I wouldn't have wanted to feel any more ill than that. With tussles I've just managed to get injections back monthly, & still feeling rotten 8 months on, taking tabs alongside, in case they help. I just wanted to get maximum from NHS before I try other avenues of paying. Not done myself favours though!

That Dr is very wrong. I'd urge you to get those injections reinstated and ideally every other day until those symptoms improve.

Really hope it soon happens....take care

[StRaphael in reply to Jo5454]

Thank you for your help. I hope you start to feel better soon. So o guess first step to getting injections reinstated is to do mma (maybe it will come back high and his dr will help us!!) if not high we will have more difficulty getting him to prescribe injections again but I guess I’ll wait to cross that bridge if I have to depending on mma results. Ugh!

[wedgewood]

Just because the b12 shows up as normal in the blood serum test , does not mean that the B12 is getting into the cells . Hence the return of symptoms. Your doctor should know this fact . As your husband has a diagnosis of P.A. , this means that he should have B12 injections FOR LIFE . Injections are the most successful way of dealing with P.A.

If you cannot get re-instatement of B12 injections asap, I would seriously consider self-injecting . Neurological Symptoms can become irreversible if allowed to persist for too long .

You appear to be in the USA. ( reference to “ insurance” ) . You can easily and cheaply obtain Cynocobalamin injections from Canada where they are an “ over the counter “ item . Hydroxocobalamin ampoules can be obtained from one or two German. Online pharmacies which will deliver to USA . Give it some thought , if you have no success with your doctor . Best wishes .

[StRaphael in reply to wedgewood]

Ty for your answer. Here in US insurance seems to affect Dr’s willingness (at least his Dr) he feels since blood test shows normal levels insurance won’t cover shots so won’t prescribe. We would prefer to self administer the shots rather than go to his office (much easier) we have asked him to just prescribe the medication we will pick up at pharmacy and do shots ourselves at home.. Nope. I will definitely order from Canada or Germany. We have no problem doing that - husband needs to see if b12 is in fact is what’s causing his issues I am hopeful it is, but no way of knowing unless we are able to try the shots again. It’s so frustrating it’s not like we are asking him to prescribe a narcotic or hard drug

[PlatypusProfit8077 in reply to StRaphael]

I’m afraid your medical system is beyond my understanding. What if you asked for a therapeutic trial of injections? If he responds well to them, it could be a sign that the tablets are not sufficient (though to be honest, those symptoms already indicate that in my opinion!)

Just be aware that sometimes there is a few weeks of some symptoms worsening or new symptoms appearing when B12 injections are started. It doesn’t mean they’re not working, just that there’s probably a lot to fix!

[wedgewood]

You can inject either Intramuscularly or Subcutaneously . Both methods work well .