I'm new here - blood test advice?

[EaroleNeen]

Hi - I'll try and not be garbled. I know you'll ask if you need more info I guess this is a B12 deficiency query, not a full blown PA, as I don't have many symptoms symptoms.

Basic point - I'm coeliac. Not sure if it has any bearing on this but it might. Had blood test taken Sept 2018, think it was the usual coeliac check up. I have arthritis in my thumbs, and half a knee replacment.

Started Christmas 2018 with mouth problems - dry as all heck, lips cracked in corners, lips and mouth sort of "smoothed off" but feeling very cottony and sort of shrunk. The flappy bits under my tongue shrunk and didn't feel flappy any more. Would wake in night (for example) with inside cheeks stuck to gums, and anything I ate or drank would make things worse.

Put up with this for a bit to see if it went away but it really got me down. Saw one Doc at practice ("my" Doc on maternity leave), who seemed to think I was imagining it, said "there are many sensations in the mouth, it doesn't do to concentrate on one of them..." (yes I walked back to the car swearing) said he couldn't see anything but gave me some cream for the cracked mouth corners. (which incidentally had "not to be used on mouth" on the packet....) No blood tests as I'd had some in Sept 2018 and he thought they were near enough.

Back to see him again as cream not helped, prescribed anti-fungal drops, didn't work either.

Decided to see locum in for "my" Doc, saw blood tests in Sept but said he'd get more as things can change. Mouth still awful, so he recommended saliva replacement mouthwash and spray. Bless him, helped a lot, but still bad. Went back for results, said try some B12 cyanocobalamin.

I'd been reading on here (recommended by a friend) and other places, decided to go for methylcobalamin instead and upped the dosage by myself. Not much happened for a week, but then definite improvement!! Told the Doc, he was stunned I think. B12 tested in Sept blood test, not Feb blood test.

Not seen anyone since then, mouth better for a while, then slipping back, added an extra tablet in my day. Better again, got worse, stopped the B12 for a couple of days, got more worse! then started again, much better this week.

Thing is, I'm due to see Doc 16th August, I made appt when mouth was bad last, it's since a bit better. (I'm REALLY steering clear of gluten in case it's not helping with absorption of B12) As I am due another coeliac check up anyway, should I ask for any extra blood stuff to be tested? Wondering about ferritin?

Can't load photos of the Sept and Feb bloodtests. I'll keep trying

Any help would be appreciated, as mouth still isn't "normal" and I would like to have in my head if there's anything else that needs looking at so I can ask the Doc, in case she's not completely clued up.

By the way, I take vit D3, magnesium, calcium (and a K2 to make it go to bones) Vit C.

[Cherylclaire Forum Support]

I now think that cracked corners of my mouth, sore lips were my first indicator that anything was wrong. Because nothing else was wrong, I ignored it for a long time. By the time any other symptoms came along, I did not relate any of them to each other. I'd never heard of B12, B12 deficiency or Pernicious Anaemia.

It was only when I was so fatigued and weak that I could no longer stand at the bus-stop in the morning without holding onto the bus stop signpost for support that I went to see the GP. This was 10 years later.

I was found to be B12 deficient- but only just ! 196ng/L (range of 197 - 771 ng/L). Lucky.

I posted 2 photos recently: of my sore cracked mouth, and of my tongue. If you double click on my name above, you can see my past posts. My GP now recognises my sore split mouth as an indicator of my B12 status (she doesn't test serum B12 ever as she knows it will be high through self-injection) and an ENT consultant recognised my throat and tongue as being a B12 deficiency indicator without the need for further testing.

I was tested for Coeliac disease and told by the gastroenterologist that she was 100% sure I didn't have it, although I have "flattened mucosal pattern at D1 and D2 (duodenum)" and "patchy gastric metaplasia" in the gastroscopy report. This can also be PA indicator, but no diagnosis.

I now know there are (or can be) many many seemingly unrelated symptoms with B12 deficiency. From hair loss and ridged nails to cognitive problems, heart arrhythmia and inability to walk properly. Many symptoms could also easily be "something else" and many remain (or have become over time) unrecognised by GPs and consultants as B12-related . Pernicious Anaemia can be difficult to identify because tests are flawed and unreliable. No doubt having Coeliac disease could make this whole process more complex.

Keep trying to post results, even if you have to do it in 2 parts. It could help someone else on here to give you advice even if only a few questions to ask. Some medication can affect/deplete your B12 levels, so this might be worth posting too.

MMA (methylmalonic acid) and homocysteine tests can be used as a secondary confirmation if B12 levels are low. My MMA is always raised (tested 5 times now) but homocysteine "normal" - so does not always return a cut and dried answer. It might be worth asking for.

[EaroleNeen in reply to Cherylclaire]

thank you, very helpful. Might have to type out some of the relevant results as my screen shots, even though converted to jpeg, won't load.

I don't take any other meds apart from the odd squirt of Beconase, so don't think there's any reactions to anything.

[LuluCops]

Do you only take your B12 in tablet form? x

[EaroleNeen in reply to LuluCops]

yes so far, as that what was the Doc said to try, and things do improve, if not totally disappear. I thought as I was having check-up blood tests for coeliac anyway, it would save time if anything else could be checked at the same time, as I've not actually been diagnosed as B12 deficient, yet, but the more I read, the more I wonder if this could be the case.

I don't think it's just the "reading medical books so now I think I've got it" syndrome lol!

[LuluCops]

If you have poor gut absorption and we usually do, then the tablet form is no good- it actually says as much in the BMJ! Which is what GP’s are meant to refer to when keeping up with advances! Mmmm I wonder how much if any of them actually read it!!!’

[EaroleNeen]

Agree - this is why I thought it might be on a parallel with the coeliac.

Won't see the first Doc again ever, because of his disinterest and attitude. The locum was closer and said "see me in three months to see how the B12 goes" (I think he was a surprised as I was at first that it had had some effect.)

To be fair, this Friday will be the first time I have seen my actual named Doc about it, she's pretty good at listening - I just wanted a few concrete suggestions so I didn't sit there rambling.

Going to put up a few blood results in a minute when I've typed them out.

[Cherylclaire Forum Support in reply to EaroleNeen]

Good that you are not wasting valuable time trying to educate educated others. Find someone who is intelligent, flexible and not beyond learning. This is all hard enough.

It certainly helps if you have someone who has seen visible results ! That is a person to stick with- so lets hope that the locum has had some input there: reports and observations. I would definitely mention this to returned named GP, reinforce that improvement as soon as possible .

3 months is a long, long time if you are in rapid decline. I wouldn't advise doing this to prove a point, but if it has occurred naturally, it would be useful for someone else in medical profession to see that decline, and be witness to this. Don't EVER do it purposefully. It can be a very long way back.

Let us know how this goes for you.

[EaroleNeen]

Sept 2018 results - I've picked out what seems like might be on the low side of things - serum vit B12 level 252 ng/L [220-700] Serum folate 4.7ng/ml [2.6-17.3] most other stuff appears to be mid-range, not sure about this one Nucleated red blood cell count <0.2 [0.0-0.2] Serum ferritin not tested

Feb 2019 results - same numbers in nucleated red blood cell. Serum vit B12 wasn't tested, nor was serum folate. Serum bilirubin level 7 umol/L [<21] serum ferritin level 127 ng/ml [10-420]

[EaroleNeen]

oh and in Feb 2019 serum zinc appears to be on the low side 12umol/L [10-18]