Happier after seeing consultant today

[Cherylclaire]

Saw a really good Oral Medicine consultant today who spent a good hour and a half with me. I showed him my photos - tongue, throat and mouth: like the ones I posted - which he said looked like classic signs of a B12 deficiency - while angular cheilitis can also be due to a bacterial complaint (for which I was swabbed), tongues that have pie-crust edges and central depressions are telltale B12 deficiency signs. He also looked at my symptoms charts and liked them (!)

He said the only thing he dislikes is when someone tells him they've been searching on the internet, and then swamps him with vast amounts of reading matter.

Best news is that he thinks that I am finally getting better on my alternate day injection regime and is going to write to my usual GP and suggest that a very gradual reduction with close monitoring might be the next step, with injections administered by the practice. Whether they accept this and reinstate my NHS injections or not remains to be seen.

He also said that he thinks I should have IFab tests - (plural !) - to check if I have Pernicious Anaemia or not, mainly because of the Gastroenterology report that noted "patchy gastric metaplasia" and the length of my recovery time. He knows that it is unreliable and that it may come back as a false negative a couple of times before giving a positive result (95% reliable). Hopefully this suggestion will also go into his report.

I am seeing him again in 4 months.

This is the second consultant who has recognised B12 deficiency immediately - and both were mouth/throat specialists. They seem to understand far more about B12 deficiency, symptoms and treatment than haematologists, gastroenterologists and neurologist that I've seen.

It has been two years since I started self-injecting every other day and it has been during the past month that I have seen the most progress.

Very hopeful and seeing my usual GP tomorrow....

[clivealive Forum Support]

That's heartening to read Cherylclaire

My nurse while giving my injection this morning remarked that her dog was having Vitamin B12 injections.

Perhaps we'd be better off going to a vet

[Cherylclaire Forum Support in reply to clivealive]

I remember my vet (my cat's vet) telling me that when cats came in for their B12 injections, all the vets suddenly became very busy. He said that cats HATE B12 injections because they are inordinately painful- and no-one wants to inject an angry cat !

Still, wonder how they determine the dose ? Are they all on the same frequency ? Presumably, they have their own version of NICE guidelines …....MICE ?

[clivealive Forum Support in reply to Cherylclaire]

[Marz in reply to Cherylclaire]

I remember Martyn Hooper speaking at the Thyroid UK Conference - telling us about sheep and their B12 needs. Also that over 80% of B12 produced in Europe goes into animals. Oh to be a racehorse !!

[Cherylclaire Forum Support in reply to Marz]

Neigh, Marz - much better to be a person !

[Marz in reply to Cherylclaire]

... would so love to trot and gallop with the wind in my mane ..... 🐴

[Cherylclaire Forum Support in reply to Marz]

Think dogs get 1 injection a week when they're feeling "ruff" !

( clivealive - I really hope you're reading this, right up your street !)

[Marz in reply to Cherylclaire]

I used to inject my DD - Darling Dog - as she wobbled towards her end . She was also hypo - sigh !

[clivealive Forum Support in reply to Cherylclaire]

My nurse whilst giving my B12 injection of Monday mentioned her dog was also getting the injections.

Perhaps we should register with the local veterinary practice

[Cherylclaire Forum Support in reply to clivealive]

….. I might have to, Clive !

[wedgewood]

Your post was really interesting .Thanks Very revealing that your consultant suggested you having the IFAB tests until they came up positive !

It’s great to read such a positive post . We don’t have enough . Best wishes .

[Cherylclaire Forum Support in reply to wedgewood]

I said "You know how unreliable they are. What do I ask for …. best out of three ?" and he said "Yes, exactly, if that's what it takes !"

Just hoping that ends up in the report wedgewood !

[wedgewood in reply to Cherylclaire]

Yes let’s hope !

[deniseinmilden]

Well done - good for you!

My dentist referred me to an oral clinic but non of them picked up the problem and wanted to do a biopsy of my tongue because it had them all baffled! Luckily and thankfully for me a locum pharmacist that I saw by chance recognised all my symptoms and wrote down for me to ask the oral clinic to test for B12 before they butchered my tongue!

I'm so pleased that you've had better care from your team.

Good luck with your continued improvement!

[Cherylclaire Forum Support in reply to deniseinmilden]

This consultant could see real improvement, but commented that I still had the groove down the middle. I'd thought everyone had that, and have never heard mention of this in relation to B12 deficiency before. Not even on here. Didn't know either that angular cheilitis can also be caused by some sort of nasal streptococcal bacteria.

Glad you didn't get your tongue sliced.

[deniseinmilden in reply to Cherylclaire]

I thought a deep grove was normal too and didn't think that your tongue looked anything out of ordinary... but that's only coz it looks like mine and I now guess that's maybe because we've had similar problems! 😁😁 x

[Cherylclaire Forum Support in reply to deniseinmilden]

I've found my tongue-twin !

Oral Medicine consultant looked very carefully at all my photos and said absolutely that this was classic deficiency and that looking at my mouth, tongue and down throat now, he could see clear evidence of my improvement.

Very heartening news that may help me with practice stopping my injections.

"Stop injections if getting worse or if getting better" doesn't sound like what I have read in NHS guidelines, haha.

(Really sorry that your tongue looks like mine, Denise !)

[deniseinmilden in reply to Cherylclaire]

No problem to me - I think it's a fine specimen!! 😂😂

[Nackapan in reply to deniseinmilden]

Goodness that was a close shave!

[Sleepybunny]

It's a relief to read your post and know that there are specialists out there who know about B12 deficiency.

"said that he thinks I should have IFab tests - (plural !)....He knows that it is unreliable and that it may come back as a false negative a couple of times before giving a positive result (95% reliable)."

I have read that IFA test can also give a false positive if blood taken close to a B12 jab.

See link below.

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

See section on "anything else person should know"

[Cherylclaire Forum Support in reply to Sleepybunny]

I had a quick look - I was completely unaware of there being 2 types of IF antibody:

Type 1: IF blocking antibody- most commonly used for PA diagnosis

Type 2: IF binding or precipitating antibody - which interferes with B12/IF complex uptake in the small intestine

..that's interesting !

As for going without B12 injections for 2 weeks: I've already been practising reduction and have just had my first injection since Saturday !

[fbirder]

I can understand your doc's dislike of people bombarding them with reams of internet printout. Much of it will be from dodgy sites. That's why I think it's best that people arm themselves with one or two proper scientific articles. You can bombard them with printouts accompanying a letter.

[Cherylclaire Forum Support in reply to fbirder]

me too, fbirder -

When I was really ill, I had problems collating evidence, deciding which research papers might be relevant for which consultant, finding the relevant papers during appointment and really barely any memory of reading through them or highlighting parts previously. Very frustrating.

I have found that a few photos (perhaps dated on back) or a colour-coded symptoms chart often has more impact and is easier to explain even if it's a foggy day.

I have written a letter before, quoting relevant passages from scientific research - it went down like a sausage in a swimming-pool !

[Nackapan]

Oh that is good news to have seen a specialist that not only listened but understood .

I really hope your Gp practice will follow this specialists advice.

So glad progress being made.

[Cherylclaire Forum Support]

Will let you know Nackapan .

I saw my usual GP yesterday and wanted to talk about the specialist's advice about how best to proceed now, but 10 minutes is never enough is it ?

So she has made another appointment for me for tomorrow.