This might not make a lot of sense to anyone who didn't see my last post about angular cheilitis, but if you are interested, have a look (photo attached).
After three cancellations, I finally got to see my Oral medicine consultant.
At first, I saw a junior that I'd never met before - and felt that sinking feeling you get when having to explain everything all over again, can't remember dates, sequence of events, test results etc, can't find them in your notes - and starting to feel like a rather inept secretary helping with a patient file update.
She was a little out of her depth when we got on to discussing haptocorrin's role in B12 protection .... and called in the professor I'd first seen three years ago !
He recognised that my condition had not gone away, so I explained what I'd done (stopping treatment as explained in my previous post) and why. That containment of a condition with undiscovered cause is what I continue to do, both with angular cheilitis and with B12 deficiency - I'm certain that there is a link and six years on, I would really like answers. He understood this.
I asked him if I could have a haptocorrin (HC) test to see if my salivary duct strictures are compromising haptocorrin which could mean ineffective B12 transportation. He told me he did not think the hospital provided this HC test, while his student quickly started looking up haptocorrin online. He said if I gave them time, they might be able to find out how to get a test !
So that's good, but here's the really interesting part:
He has previously been quite worried about my self-injecting B12 every three days for a couple of reasonable reasons:
a) - My B12 serum level was beyond a measurable amount, so how could anyone be sure that it was not accumulating ? No real means of monitoring that.
b) - My B12 was accessed online from various companies - how could there be quality assurance ?
(Well I could say that a) I'm not concerned as the alternative (NHS regime) does not allow me any life and b) this is also what the NHS do - but I was brought up to be polite, and anyway, quite like him)
He was so concerned that he asked my GP, in his last report, to help me to reduce injections gradually with close monitoring and support. But that was pre-Covid.
Now, he has had a complete about-face: he has changed hs mind about me trying to reduce my B12 injections. He believes that my body will now not be able to function properly without it. He also said that tablets would be of no use to me at all !
I was so surprised that I did nothing more than nod my head. Who has he been talking to ?
Yes, I should have asked him to report his new position on this to my GP, asked him to recommend reinstatement of NHS injections at a more useful frequency - but my brain just doesn't work that quickly.
Still, he wants to see me again in about 4 months.... so back on the nipple cream meanwhile, and waiting for a copy of the report. I'll let you know.
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Cherylclaire
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Wow! What a difference - can we bottle what he took and administer it to all? 😁
I'm glad you've had some useful care.
I believe it is definitely worth looking into B2 (riboflavin) in the meantime and I'll add in the link I found this morning so others can view it if they can't find it on your other post.
B2 is just one of the essential vitamins and minerals needed for the optimal working of B12 and the article says it "is an essential component of two major coenzymes, flavin mononucleotide (FMN; also known as riboflavin-5'-phosphate) and flavin adenine dinucleotide (FAD). These coenzymes play major roles in energy production; cellular function, growth, and development; and metabolism of fats, drugs, and steroids. The conversion of the amino acid tryptophan to niacin (sometimes referred to as vitamin B3) requires FAD. Similarly, the conversion of vitamin B6 to the coenzyme pyridoxal 5’-phosphate needs FMN. In addition, riboflavin helps maintain normal levels of homocysteine" - I guess that's part of the B12 bit! I know my my lips go like yours, plus my tongue swells and spilts, and I feel pretty pants if I don't get enough. Back to more cheese and liver paté for me again.
Some technical gubbins from the Linus Pauling site :
"Methylenetetrahydrofolate reductase (MTHFR) is an FAD-dependent enzyme that plays a key role in one-carbon metabolism by catalyzing the reduction of 5,10 methyleneTHF to 5 methylTHF. Once formed, 5 methylTHF is used by methionine synthase for the vitamin B12-dependent conversion of homocysteine to methionine and the formation of THF (Figure 2). Both FMN and FAD are coenzymes for the enzyme methionine synthase reductase, which is responsible for the regeneration of methylcobalamin, the biologically active form of vitamin B12 acting as a coenzyme for methionine synthase (11). Along with other B vitamins (folate, vitamin B12, and vitamin B6), higher dietary riboflavin intakes have been associated with lower plasma concentrations of homocysteine"
At last seen!! Very interesting his change of opinion.
Next visit perhaps is the time to ask if he's seen more 'papers' on frequent b12 Injections needed.
Or the theory once on 12 injections when needed you cant go back as overrides any function of any absorbtion via the gut. / ileum.
Can't remember where I read that.
Similar to after injecting insulin the pancreas totally gives up. Initially pancreas csn kick in messing up sugar levels. Just remember making that comparison.
Also if nothing in thus report.
Ask him to write to Gp then about a prescription??
No hurry after all 6 years waiting !!
Wouldn't bother asking for needles as it's really difficult to get those on prescription.
Not on list ??
I didn't push that and told gp I woukd get my own.
Pharmacist has said since If I state what's needed the Gp can add abd he can get them??
Not bothered to date.
So pleased junior got Mr Cook in.
Overwhelming having to update junior.
Continuity and good records would save so much time.
Let's hope you can get that test.
Even if can't prescribe for it.
An explanation much needed.
As treating symptoms as we unable to sort the cause with full / complete effect .
I've heard of so many people getting their appointments cancelled.
I'm even had two dental appointments cancelled.
Had initial first one and paid upfront to make sure I go!!
This worries me as last time treatment delayed I lost the tooth. .
Hope the next appointment happens and is with Mr Cook.
Ask a 'difficult' question and he will be summoned .
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