Mouth Pain

[HMBradley53]

I haven't been diagnosed yet , I have an appointment with a new Rheumatologist in week mine retired. I had blisters and horrible pain in my mouth ( started 3 years ago ) we had the blisters biopsied and came back as Lupus so we assumed all the pain in my mouth was lupus. No more blisters but the pain and red white patches are still there and painful. I have to use childrens fluoride strawberry tooth paste and mouthwash can't have anything minty, salty or even slightly spicy at all and when I get a cleaning my gums swell immediately so she numbs me first. When I look in my mouth theres red / white painful patches. My daugher in law is a NP and said she is positive it's Percicious Anemia because of my red swollen tongue and the painfull patches. Does anyone else have this mouth issue?? I'm going to ask if he can test me for it..She told me to start taking B12 and Folate so I started taking it. I also take 2 iron pills a day because of anemia...My PCP sent me to a hematologist because of my iron levels and she is the one who told me to take 2 iron pills a day. She just dismissed me and said my iron numbers weren't low enough for an infusion. I had gastric bypass in 2009 my daughter in law said that probably contributed to it. I currently have Hashimotos, Lupus, Reynauds and I do weekly human globulin infusions because I am Immune deficient. I started taking B12 and folate about 2 weeks ago and stopped it just in case I shouldn't be taking it if I do bloodwork . Daughter in law said there are antibodies they can check also and B12 tabs doesn't interfer with it. Other symptoms besides this mouth pain and swelling is feeling sick and I have vomited a couple times, if I turn too quickly I get dizzy and have been doing MRI because of the horrible memory issues.

Range 193 to 986

11/22/17 2000 H

12/28/18 1,188.0 H

9/14/19 1,391.0 H

5/23/20 419.0

9/12/20 925.0 H

11/7/20 958.0

4/16/21 964.0

3/25/22 372.0

[Gambit62 Administrator]

Having some problems understanding the test results you have given above.It looks like your levels were off the measurable scale in 2017 and have been dropped till May 20 and then showed a sharp rise and have been falling since then.

This doesn't seem consistent at all with a B12 absorption problem that hasn't been treated with B12 injections.

Generally with an untreated absorption problem you would expect to see a consistent drop across time - the peaks appearing in your blood work are very confusing.

In someone without a B12 absorption problem or a dietary deficiency you would expect to see levels being relatively constant somewhere in or around the normal range - within a band of 20% because that is the accuracy of the serum B12 test.

The symptoms you mention are consistent with B12 deficiency - swollen red tongue is considered to be a classic symptom of B12 deficiency.

As you already have several auto-immune conditions the chances of developing another are quite high and PA is an auto-immune disorder in which the gut attacks and destroys the mechanisms that allow you to absorb (most) B12 and regulate your serum B12 levels using stores in the liver.

What dose were you taking?

[HMBradley53 in reply to Gambit62]

When I was high I was taking 5,000 under the tongue for the top 3 high numbers then I started getting lazy with it then the last couple years is when the issues started with my mouth and asthma I couldn't even breath on my treadmill and with Covid regular Dr appointments were on hold. I emailed my PCP to tell her about my mouth and she said it's a Lupus issue this was about 3 years ago. months went by and my Rhumetologist who was doing phone appointments prescribed me prednisone and did blood work 11 /7/20 3rd from the bottom result so it was fine. Then last year in April I'm running on the treadmill and all of a sudden I couldn't breath ( had been running for a couple years ) I got off the treadmill get my breath back and I'm thinking what the heck happened and it happened again and again so I stopped running. I told my Rhumetologist about it and lot's of UT'S s and other infectionswas B12 still ok but my IgG, IgG total and other things were off and after a year of no prednisone I was diagnosed with Hypogammaglobulemia I started Infusion therapy weekly and saw a pulmonologist for the breathing issues got tested for asthma and its a mild asthma but still was having a hard time breathing even mopping large floors at work I had to sit and catch my breath until now I use 3 inhalers and a pill every day for asthma. Then 3 months ago my daughter in law ( NP )was here we were eating and she could see I was having trouble so she looked in my mouth and asked how my B12 was and I said fine we looked at the numbers and when this started would be the last 3 results so there is a drop in that time so she told me to start B12 again and Folate and I also take iron every day because I'm also anemic. I still have the mouth pain and it still looks red / patchessome days worse than others if I have a good day I just think to myself yes its going to go away and it never does. I stopped taking the B12 only a week ago but I read there are antibodies along with it that can be checked for PA. I have an appointment with my new Rhumetologist next week and I'll tell him whats been happening to see what he says..

[Gambit62 Administrator in reply to HMBradley53]

thanks for clarifying. If you were okay with the high dose oral then you probably need to go back to it.

[HMBradley53 in reply to Gambit62]

Thank you