Discussions By Condition: Gastrointestinal conditions

Vitamin B12 deficient, swollen/burning lips

Posted In: Gastrointestinal conditions 8 Replies
  • Posted By: hvalenti
  • October 9, 2007
  • 06:25 AM

I am about to give up, if someone from this site can't direct me where to go next I don't know what I'll do. :confused: I am a 51 y/o obese mother of 6 kids with a disabled husband. Have had diarrhea for several years (sometimes bloody). We lost our youngest at 14 to a PE 3 years ago. I began to lose my hair shortly after, which was all thought to be stress related. I mention this only to show that MDs have put a lot of my symptoms off to my life cicumstances. Several colonscopies/endoscopies have shown nothing abnormal. I have taken Prevacid on and off since 1998 for GERD, am also on Glucophage 1000 once daily, also Lisinopril and Celexa. Was diagnosed with HSP Vasculitis 2 years ago (It is a children's disease but mine was verified by biopsy...).

In Jan 07, I saw my PCP for memory loss. After chatting, she ordered labs - including a B12 serum test, which came back "low" - somewhere in the 200s I seem to recall. She had me come in for B12 injections once a week for four weeks, then monthly. I had suffered daily headaches for several years and noted these left during that period - and about 3 weeks after a monthly injection the headache would return. So I went to every three weeks for an injection. In May, I asked my PCP if we could do a serum test to see what my B12 level is at the 3 week mark, prior to injection. It seems to hover somewhere between 300-450 or so at that point.

In my studies online, I have apparently had several symptoms of B12 deficiency - fatigue, of course (doesn't everyone experience that though?), balance problems (walking in the dark or going down stairs w/o holding on tight to the rail? no way!). Brain fog - I've even tried to write my old address from 17 years ago, and the year on many of my checks I've written is often 1970 something. ??? I work in an ER and have trouble processing information that I never had trouble with in the past, in addition to many other signs/symptoms. I also experience severe stiffness of joints and lately some of my finger joints have been painful and stiff, don't know if this is related to B12 deficiency.

Was diagnosed in April with an anal fissure. Continue to have abd pain and diarrhea on and off. I thought perhaps it was leading to Crohn's Disease, but just had a CT of the abdomen/pelvis last week which showed nothing. However, I often feel very bloated and then have diarrhea directly after eating.

About 6 weeks ago, I felt like maybe I was developing an allergic reaction with my lips - they felt numb and swollen one morning. By mid day, they were very swollen, but by night it was gone, replaced with some little bumps on the lips that came and went within an hour. Then my lips became dry and burned, then peeled. Over the course of several days they oozed, almost felt like they were sweating. Not easy to see with the naked eye but by morning, I had a "thin, easily removed with water" crust on my lips. This process repeats itself weekly - several times a week. Around my mouth I look like a little kid who keeps licking and makes it dry. The only thing I've found to help relieve the burning feeling is Eucerin cream covered with polysporin, which I wake several times a night to slather on or I feel like my lips are swollen tight and are extremely dry.

I don't know if any of this is related but I'm at a loss as to what kind of MD to see. The gastro guy seems to think I don't have Crohns, my PCP mentioned vitamin B deficiency also can cause the lip trouble (I can't find anything like this online though!). Other than the slight balance problem the neurologist says he doesn't think he can help me since I'm already on the B12 injections. It's too late to do the homocysteine levels, I guess, to really investigate the B12 problem but after reading here it seems that maybe the Glucophage and Prevacid might also be a cause, as well as the chronic diarrhea. ??? Sorry this is so long, but can anyone direct me? Thank you for your help. :rolleyes:

Reply Flag this Discussion

8 Replies:

  • I know it would probably be a slim chance but I was just watching Mystery Diagnosis on Discovery Health and there was a woman who had symptoms similar to you and was B12 deficient. She was diagnosed with Pernicious Anemia and requires B12 shots regularly for the rest of her life. You might look into it and see how well your symptoms match the disease. Also, the doctor on the show said anemia is not always present.
    Anonymous 42,789 Replies
    • October 21, 2007
    • 07:34 AM
    • 0
    Flag this Response
  • I am B12 deficient and require shots monthly..the shots began over the summer....it can take a long time for the body to build up the B12 to "normal" levels..I am still not feeling as well as I'd like to with this but I do suffer from a lot of other health problems.Good luck and I'm sorry for your loss...my thoughts are with you.
    Anonymous 42,789 Replies
    • October 21, 2007
    • 10:42 PM
    • 0
    Flag this Response
  • Most of your symptoms do sound like "Pernicious Anemia." A lot of the neurological affects from your B-12 deficiency may never go away. The vitamin deficiency over time can cause permanent nerver damage, heart damage, damage to other internal organs. Understand that the B-12 deficiency is because your body does not have the ability to absorb the B-12 you'd normally get in your diet. So, you will need to take them for the rest of your life. Also, have they tested you for "Celiac Disease." This is an allergy to Wheat or Wheat Gluten. They can do a simple blood test to verify. You may want to look up Celiac disease and check against your symptoms. You may have more than one problem or disease going on.
    Kaebro 8 Replies
    • November 17, 2007
    • 05:56 AM
    • 0
    Flag this Response
  • Has your doctor explored causes of your B12 deficiency? Your story made me think of my own B12 deficiency--it turned out to be caused by a fish tapeworm infection. Not a very common cause, but sometimes the underlying condition might be worth investigating. Good luck.
    Anonymous 42,789 Replies Flag this Response
  • About 6 weeks ago, I felt like maybe I was developing an allergic reaction with my lips - they felt numb and swollen one morning. By mid day, they were very swollen, but by night it was gone, replaced with some little bumps on the lips that came and went within an hour. Then my lips became dry and burned, then peeled. Over the course of several days they oozed, almost felt like they were sweating. Not easy to see with the naked eye but by morning, I had a "thin, easily removed with water" crust on my lips. This process repeats itself weekly - several times a week. Around my mouth I look like a little kid who keeps licking and makes it dry. The only thing I've found to help relieve the burning feeling is Eucerin cream covered with polysporin, which I wake several times a night to slather on or I feel like my lips are swollen tight and are extremely dry. I know that this topic has not been discussed in a while, but I was curious to know if you ever found out what caused this? I've been having similar problems with my mouth/lips and can't seem to pinpoint what is causing it? Any ideas?Thanks in advance for any answers you can provide.
    csc4eva 1 Replies
    • August 12, 2009
    • 09:57 PM
    • 0
    Flag this Response
  • Please let me know what happened with your swollen/burning lips. I am experiencing the same exact symptoms that you mentioned. I am on my 2nd round of prednisone and am waiting to get a referral to a specialist (immunology/allergist). This is very painful and it is getting to the point where I don't want to go out in public because I look like I have a red ring around my mouth. Please help me!
    Anonymous 42,789 Replies Flag this Response
  • Please let me know what happened with your swollen/burning lips. I am experiencing the same exact symptoms that you mentioned. I am on my 2nd round of prednisone and am waiting to get a referral to a specialist (immunology/allergist). This is very painful and it is getting to the point where I don't want to go out in public because I look like I have a red ring around my mouth. Please help me!This post is old but I was wondering what happened. This same problem has been plagueing me for a little over a month now. At first I thought I burned my lip, then thought it was a weird cold sore, and now I am at a loss! I live in a small community without access to specialists! Did you ever get this resolved? My lips burn!!!
    Anonymous 42,789 Replies
    • January 20, 2011
    • 09:22 AM
    • 0
    Flag this Response
  • A little over a month ago I started experiencing a similar thing... and it's awful! About 5 days before my last period, my lips turned red and started to burn and tingle. For about a week I thought it was a bad case of chapped lips. They became super dry, I had cracks in the corners of my mouth and then they became like sandpaper and peeled. Thought that'd be the end of it but the whole process started over again. burning, tingling, some itching and now swelling. I looked like botox gone very...
    Anonymous 1 Replies
    • August 28, 2014
    • 00:39 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.
Advertisement

Safe Sex With Hepatitis C

Prevent the spread of the hepatitis C virus.

Preventing Lung Infections

With COPD, it’s important to protect your lungs.

8 Health Dangers of Depression

Unmanaged depression can take a toll on your physical health.

Food Choices for Diabetes

What, when and how much you eat affects your blood sugar.

6 Exercises for Multiple Sclerosis

Ease your way into these stretching and strengthening moves,

Advertisement