24 replies to this topic

[August1]

Hi everyone,

I have tinnitus, mainly on the right side, which has become more pronounced since by dx. My mom has it as well due to hearing loss and mentioned that she takes a sublingual b12 supplement (1000 mcg) which has helped her a lot. It's not a cure, per se, but she mentioned that it has helped tone hers down a lot.

I did a little research and there are some pretty established links between b12 deficiency and tinnitus. B12 deficiency is also a topic that seems to pop up on this forum from time to time. Causes may vary, but a deficiency can also be caused by lack of acid in the stomach, so if you take anything for acid reflux that could impede b12 intake. (I do).

To verify, your doc can order b12 and folate test. They can also look for RBC "anisopoikilocytosis." I checked my last report and sure enough anisopoikilocytosis was noted although nobody mentioned it to me. A s you probably know, the Oncs need to see the big picture and if that looks good they'll tend to move on.

I'll update after I've had the chance to give it a try.

Take care!

[TeddyB]

Thanks for suggesting the b12, i have actually started a multivitamin which has both folate and b12, i will give feedback in this thread if it helps with the tinnitus. So far no luck, but only been on it a few weeks.

[hannibellemo]

Hi, Teddy,

I didn't realize I had tinnnitus until this summer so I don't know if it's related to TKIs or not (probably not, probably more age-related). This summer I was sitting on the screened in porch at dusk with some friends and drinking wine. I mentioned that the peepers and crickets were out in full force. Everyone looked at me like I'd lost my mind. That was when I realized they weren't hearing the same things I was hearing! Oh well, at least it sounds like outdoor night noises whenever I notice it and not some high pitched whine or loud banging. I just close my eyes and pretend I'm camping!

I'm going to try that sublingual b12 supplement, thanks for mentioning it, Westphar!

Pat

[TeddyB]

Sorry to hear you have the tinnitus as well Pat, lets hope the b12 helps.

If the tki`s are to blame, or if there are other causes, who knows, im pretty sure the tki`s arent making it any better at least....

Seen a few CML people on facebook complain about the same thing, so who knows.

Im glad to hear you are enjoying wine, i am to, cheers