PE & ME - Mouth ulcers

[be123]

Hello everyone, I've followed the posts on this site for a while now so I thought I should write my own (finally!). I have been on monthly b12 injections for my PA for about 2 years now- it sounds like I am a lucky one as my GP is happy for me to have these forever, but I have also been suffering from ME (also known as chronic fatigue syndrome for those who haven't come accross this one before) and I seem to suffer from a lot of horrible mouth ulcers usually around the time that my injection is due or when I have over done it. My GP hasn't necessarily fobbed me off, but they don't really have many suggestions on how to prevent them or stop them from being so sore. I was just wondering if anyone was in the same situation and if so what you use to help? Thank you xx

[Gambit62 Administrator]

B12 deficiency can cause oral problems and result in ulcers.

Do you notice other symptoms coming back just before your next injection is due.

[be123 in reply to Gambit62]

Sometimes i get pins and needles in my hands and feet, but almost every month without fail i get really tired and the fog comes back about 4 days before. I can deal with all of the above, it's just the pain from the ulcers gets so bad sometimes i can't eat.

[Gambit62 Administrator in reply to be123]

well that suggest to me that you actually need your B12 at least 4 days earlier than you are getting it. Have you got a chart of symptoms against when you have injections that you could share with your GP?

No guarantee that they will be prepared to go for more frequent injections but it does sound as if they are prepared to work with you

[be123 in reply to Gambit62]

I've not got a list yet, but I think I will start making one. Thank you

[Galixie]

I used to get mouth ulcers all the time. What has worked for me is taking folic acid. I'm not sure why it works (because I've never been deficient in folate), but it does.

You could try taking additional folic acid around the time of your injection and see if it helps.

[be123 in reply to Galixie]

Good idea! I've booked in a blood test for the end of the month to check all of my levels before I need my next one - the GP said they would test my levels of that too I think which is odd as nobody has tested it before. I will definitely start taking some after my blood test! Thank you!

[Marz]

Have they excluded other things that could be causing ME like symptoms ? My cousin was diagnosed with ME back in the 60's and had to stop working as a Physiotherapist. When I was diagnosed with Hashimotos here in Crete in 2005 - she too was tested and found to have the same. A sad story.

Often GP's just test the TSH and if in range declare you normal. This is only a small part of the story and more thorough testing should be done. TSH - FT4 - FT3 and the Thyroid anti-bodies - Anti-TPO and Anti-Tg. Often the FT3 is not tested at GP level and yet it is the most important thyroid hormone and needed in EVERY one of the trillions and trillions of cells in the body. So when the level is low then it is understandable why there isn't enough to go around the whole body and things begin to go wrong.

I would also check your Ferritin - VitD and Folate levels.

I have read CoQ10 helps at a cellular level with CFS/ME/FIBRO ....

[be123 in reply to Marz]

I haven't actually been tested for Hashimotos however I have had my thyroid levels checked as sometimes it gets quite swollen - apparently nothing was wrong at the time, but I suppose there's no harm in getting it checked again! I'm booked in for a blood test at the end of the month, so I will ask for FT3 to be tested as well as the Ferritin and Folate. Thank you for your help.

[Marz in reply to be123]

I doubt very much that they will test for the FT3 - the MOST important Thyroid test - as I mentioned above. Private Finger Prick Home Testing Kits are available from various companies and used successfully by many on the Thyroid UK Forum .... you need to know the results for the things I have detailed above so you can rule out thyroid. Like B12/PA issues - the GP should also look at your symptoms in addition to the blood test result on the computer screen for the Thyroid. A Symptoms list is included in the link below - you could go through it and tick the ones you have.

thyroiduk.org.uk/tuk/testin...

You are legally entitled to copies of your bloodtest results - so try and obtain them from the time you were told all was well - possibly it was not. Always get into the habit of asking for your result copies so you can monitor and take control of your own health. Have you had a scan of the Thyroid ? it was part of my diagnosis here in Crete as the TSH - FT4 and FT3 were all within their ranges but the Anti-bodies were off the scale The scan also confirmed Hashimotos.

Don't forget the VitD test too I am not a medic - but a Hashimotos gal with a B12 issue !

[be123 in reply to Marz]

Ahh ok, thank you for the link I will definitely look into getting my own kit and ticking off the symptoms!

Yes I've had an ultrasound on my thyroid and apparently there wasn't anything wrong so I may need to ask for this to be re-done soon!

Good idea re getting a copy of the results, I'll try and get as much info as possible.

Thanks again

[4101]

I don't have your particular symptoms but I would seem to agree with those who say that you probably need your B12 injection a little more frequently. And you might consider supplementing with a sublingual. So far sublingual has worked for me but I also avoid gluten and most other grains. I have a lot of digestive problems but until my B12 level has increased I don't feel I should try to look for other causes.