Vitamin B12 Deficiency/Pernicious Anemia

[ChrizJen]

Just venting/sharing...long story:

I was diagnosed with B12 deficiency/pernicious anemia. It's exactly what it says: a lack of B12 in the body. Basically, my body does not produce enough of the enzyme that aids in absorbing the B12. Pernicious Anemia affects the body's ability to produce red blood cells, and if left untreated it can cause many serious problems. Well, it turns out that I've had it for years (without diagnosis) and I've been dealing with some of those serious problems.

It was actually a relief to finally have a reason for all of the symptoms I've been having over the past months and years! I was beginning to think I was just crazy!
Until the past couple of years with this, I was fairly healthy and never really got "little" illnesses very often, so aside from regular yearly check-ups, I didn't see my regular MD very often. I've never had a complaint about him, and I had never considered switching until now. I called last week and my regular doctor was out on vacation. So I saw one of his partners. I'm considering switching now.
This other doc took the time to ask me questions, to look at previous notes and actually try to piece it all together.

These are some of the symptoms I've had:

-I've had what was diagnosed as IBS for about 2 years now, and I was just told to modify my diet and avoid the foods that seem to trigger it.

-For about a year now, I've had a strange dull pain in my lower left abdomen. I was sent for upper and lower GI as well as a colonoscopy and was told that everything was normal, so in other words, again no diagnosis, just live with it.

-Over the past 6 months to a year, I've had neuropathy and muscle weakness and pain that gets so extreme at times that I can't even get myself out of bed in the morning. I've had sensory, motor, and autonomic nerve symptoms, (including numbness and loss of sensation in my hands, blood pressure issues, inability to control muscle function, and bladder issues) After an MRI and CT scan, I was told that I was fine and that this, too could not be explained. I then began feeling like this was all in my head. *And as a side note, this new doc says that given the severity of my peripheral neuropathy and how long it's gone untreated, some of the nerve damage could be permanent.

-I've had several bouts of confusion/anxiety/disorientation/memory loss. I was told everything from hormones to stress to lack of sleep that could be the causes.

-I've been struggling off and on for the past couple of years with extreme fatigue. It comes and goes, but at times even when I get a full 8 hours of sleep, I still wake up feeling tired and run down. I was told that I could use to lose some weight, and that this was probably a side effect of that.

-It all came to a head this last week when I couldn't take it any more. I've had a "burning tongue" sensation for about 2 months now. It's like you've burned your tongue on really hot coffee, and the taste buds get swollen and painful, but it never goes away. I get this when I eat walnuts and pecans, so at first I assumed that I must have accidentally eaten something with them in it. But then when it lasted more than a week or so, I called the doctor's office. He said that he still thought it was just a bad allergic reaction, and to keep taking Benadryl. So now that it's been 2 months and I can't eat because of it, I was fed up and made another appointment. And that, my friends, is where I am today.

For now, I'm taking B12 drops under my tongue (for better absorption), 1000 mg twice a day, and I'm already seeing a slow improvement in the soreness in my tongue! So far that's the only improvement I've noticed, but any improvement is better than none!! And the doctor wants to start me on high dose B12 injections. I'll have one per day for the first week, and then once a month injections.

It's both frustrating and a HUGE relief to finally have some answers! Frustrating because something so seemingly simple as a vitamin deficiency, that could have (and should have, in my opinion) been diagnosed a long time ago (if my doctor had ever taken the time to look through my chart and see that all of these things could be linked) could now be the cause of permanent damage and ongoing problems. But on the other hand, it's such a relief to know that all of the symptoms I've been having can now be explained!

People did tell me before that I should seek a second opinion on some of the things diagnosed above, because I thought all along that there was something seriously wrong. I guess I just trusted my doctor a little too much and should have questioned him more. It just goes to show that we do know our own bodies better than anyone else can, and we have to take control of our own health.

Sorry to bore you with all of my rambling, but I just had to share with someone. I don't normally put my health issues "out there" for everyone to know, but this was just such a big thng for me!


Thanks for reading!
-Christal

 

[minkydog]

Oh my! That sounds serious. Let's hope you're on the road to recovery now.

 

[jyssilly]

Wow, what an ordeal!
I'm glad you're on the road to recovery! I hope it goes smoothly!

 

[luvmarypoppins]

Hope you are on the road to recovery. I had to have 3 transfusions for my anemia and non existent B12. I am taking 1500 mg tablets and go get a shot once a month.

Just wondering if you had any thyroid blood work done?

Wishing you all the best,

 

[NHdisneylover]

Chris,
I had 8 years of symptoms (similar to yours--lost of nerve issues and increasing anxiety which eventually turned into weekly panic attacks. I also had heart problems and many of the "littler" things) and had 5 doctors in 3 states miss it entirely before being diagnosed 3 years ago.

After 8 weeks on vitamins (I am VERY lucky that taking it orally works and i do not need shots) most of my symptoms were gone. It was the most amazing thing to suddenly feel okay again. I have a few lingering muscle issues but otherwise I am fine now. I hope you find a similar recovery

 

[LBKB]

Best wishes on your recovery. I get B-12 shots every 2-3 weeks also.

 

[Nette]

Just venting/sharing...long story:

I was diagnosed with B12 deficiency/pernicious anemia. It's exactly what it says: a lack of B12 in the body. Basically, my body does not produce enough of the enzyme that aids in absorbing the B12. Pernicious Anemia affects the body's ability to produce red blood cells, and if left untreated it can cause many serious problems. Well, it turns out that I've had it for years (without diagnosis) and I've been dealing with some of those serious problems.

It was actually a relief to finally have a reason for all of the symptoms I've been having over the past months and years! I was beginning to think I was just crazy!
Until the past couple of years with this, I was fairly healthy and never really got "little" illnesses very often, so aside from regular yearly check-ups, I didn't see my regular MD very often. I've never had a complaint about him, and I had never considered switching until now. I called last week and my regular doctor was out on vacation. So I saw one of his partners. I'm considering switching now.
This other doc took the time to ask me questions, to look at previous notes and actually try to piece it all together.

These are some of the symptoms I've had:

-I've had what was diagnosed as IBS for about 2 years now, and I was just told to modify my diet and avoid the foods that seem to trigger it.

-For about a year now, I've had a strange dull pain in my lower left abdomen. I was sent for upper and lower GI as well as a colonoscopy and was told that everything was normal, so in other words, again no diagnosis, just live with it.

-Over the past 6 months to a year, I've had neuropathy and muscle weakness and pain that gets so extreme at times that I can't even get myself out of bed in the morning. I've had sensory, motor, and autonomic nerve symptoms, (including numbness and loss of sensation in my hands, blood pressure issues, inability to control muscle function, and bladder issues) After an MRI and CT scan, I was told that I was fine and that this, too could not be explained. I then began feeling like this was all in my head. *And as a side note, this new doc says that given the severity of my peripheral neuropathy and how long it's gone untreated, some of the nerve damage could be permanent.

-I've had several bouts of confusion/anxiety/disorientation/memory loss. I was told everything from hormones to stress to lack of sleep that could be the causes.

-I've been struggling off and on for the past couple of years with extreme fatigue. It comes and goes, but at times even when I get a full 8 hours of sleep, I still wake up feeling tired and run down. I was told that I could use to lose some weight, and that this was probably a side effect of that.

-It all came to a head this last week when I couldn't take it any more. I've had a "burning tongue" sensation for about 2 months now. It's like you've burned your tongue on really hot coffee, and the taste buds get swollen and painful, but it never goes away. I get this when I eat walnuts and pecans, so at first I assumed that I must have accidentally eaten something with them in it. But then when it lasted more than a week or so, I called the doctor's office. He said that he still thought it was just a bad allergic reaction, and to keep taking Benadryl. So now that it's been 2 months and I can't eat because of it, I was fed up and made another appointment. And that, my friends, is where I am today.

For now, I'm taking B12 drops under my tongue (for better absorption), 1000 mg twice a day, and I'm already seeing a slow improvement in the soreness in my tongue! So far that's the only improvement I've noticed, but any improvement is better than none!! And the doctor wants to start me on high dose B12 injections. I'll have one per day for the first week, and then once a month injections.

It's both frustrating and a HUGE relief to finally have some answers! Frustrating because something so seemingly simple as a vitamin deficiency, that could have (and should have, in my opinion) been diagnosed a long time ago (if my doctor had ever taken the time to look through my chart and see that all of these things could be linked) could now be the cause of permanent damage and ongoing problems. But on the other hand, it's such a relief to know that all of the symptoms I've been having can now be explained!

People did tell me before that I should seek a second opinion on some of the things diagnosed above, because I thought all along that there was something seriously wrong. I guess I just trusted my doctor a little too much and should have questioned him more. It just goes to show that we do know our own bodies better than anyone else can, and we have to take control of our own health.

Sorry to bore you with all of my rambling, but I just had to share with someone. I don't normally put my health issues "out there" for everyone to know, but this was just such a big thng for me!


Thanks for reading!
-Christal

I'm sorry to hear this. I had a very similar problem with the neuropathy, and other symptoms. In my case, I had a neurologist who diagnosed it as CIDP (which is an autoimmune disorder and a Guillian Barre variant) and prescribed IVIg (IV immunoglobulin -- basically other people's immune systems). Because I improved on these treatments we thought we had it nailed. However, I kept having to go for boosters.

About a year after the treatments started (about 2.5 years after onset of symptoms) I had my blood drawn for a B12 test. The number was like 175 or something... (normal is over 1000). After a while on the weekly 1000 mg shots I needed the IVIg treatments less and less. I still do believe my condition was not a cause of the B12 deficiency (which I definitely have!) but from the autoimmune disorder, but because my B12 stores were so low my body couldn't heal the nerves and so the symptoms kept recurring.

It's taken me over 5 years to get my b12 up to normal levels with weekly shots. So keep them up even if it seems to not be working. Even with my levels still very low, having the shots made my other symptoms all but disappear. I was also told that I might have permanent nerve damage in my fingers and toes (they had been symptomatic the longest) but other than a very mild numbness in the tips of the fingers and toes, I don't have any problems with that. I do however have a residual drop foot and a pretty bad tremor (though that might be a hereditary tremor). But to think that I was a point where I
almost could no longer walk before I finally got the diagnosis, I'm pretty happy with my recovery.

Hang in there. I know this sucks. And good for you for thinking of seeing another doctor. I'm super picky about doctors now. The neurologist who finally got my diagnosis right was not the first one I saw. The GP who sent me to a neurologist in the first place is not the one I see any longer. All of my doctors now take the time to chat with me and listen to my concerns. They don't take offense if I do my own research and offer suggestions about how I would like to be treated. I firmly believe that NO ONE should put up with a doctor who brushes them off or belittles them.


ETA: I wanted to add that B12 deficiency is often hereditary. I found out after the fact that my mom's B12 was even lower than mine, and that my grandmother used to get B12 injections as well.

The really bad part is that your liver normally stores enough B12 for like 7 years, so it can take a REALLY long time for symptoms to develop.

 

[mommasita]

Hi there!

I have PA as well. I am only bi weekly injections. I was taking one per month, but my numbers are still VERY low.

I can relate to each of your systems. And also was told the damage done is permanent.

Many (or at least ALL of mine) doctors don't agree with B12 and weight loss, but I can say for me that I lost A LOT on it, and continue to do so. It is about the only thing that has changed in my diet/exercise in the past year or more.

My team of Dr's are excellent, and I never have to hesitate to call in, or be seen for anything at all. THey keep very close check on my B12 numbers.

I hope that you feel better soon. THe first few months my numbers went up, thus I felt much more energetic. Now, I don't notice anything at all, lol. But I do have other issues.

I hope the 3 of you have a great holiday.

 

[ChrizJen]

I'm sorry to hear this. I had a very similar problem with the neuropathy, and other symptoms. In my case, I had a neurologist who diagnosed it as CIDP (which is an autoimmune disorder and a Guillian Barre variant) and prescribed IVIg (IV immunoglobulin -- basically other people's immune systems). Because I improved on these treatments we thought we had it nailed. However, I kept having to go for boosters.

About a year after the treatments started (about 2.5 years after onset of symptoms) I had my blood drawn for a B12 test. The number was like 175 or something... (normal is over 1000). After a while on the weekly 1000 mg shots I needed the IVIg treatments less and less. I still do believe my condition was not a cause of the B12 deficiency (which I definitely have!) but from the autoimmune disorder, but because my B12 stores were so low my body couldn't heal the nerves and so the symptoms kept recurring.

It's taken me over 5 years to get my b12 up to normal levels with weekly shots. So keep them up even if it seems to not be working. Even with my levels still very low, having the shots made my other symptoms all but disappear. I was also told that I might have permanent nerve damage in my fingers and toes (they had been symptomatic the longest) but other than a very mild numbness in the tips of the fingers and toes, I don't have any problems with that. I do however have a residual drop foot and a pretty bad tremor (though that might be a hereditary tremor). But to think that I was a point where I
almost could no longer walk before I finally got the diagnosis, I'm pretty happy with my recovery.

Hang in there. I know this sucks. And good for you for thinking of seeing another doctor. I'm super picky about doctors now. The neurologist who finally got my diagnosis right was not the first one I saw. The GP who sent me to a neurologist in the first place is not the one I see any longer. All of my doctors now take the time to chat with me and listen to my concerns. They don't take offense if I do my own research and offer suggestions about how I would like to be treated. I firmly believe that NO ONE should put up with a doctor who brushes them off or belittles them.


ETA: I wanted to add that B12 deficiency is often hereditary. I found out after the fact that my mom's B12 was even lower than mine, and that my grandmother used to get B12 injections as well.

The really bad part is that your liver normally stores enough B12 for like 7 years, so it can take a REALLY long time for symptoms to develop.

Hi there!

I have PA as well. I am only bi weekly injections. I was taking one per month, but my numbers are still VERY low.

I can relate to each of your systems. And also was told the damage done is permanent.

Many (or at least ALL of mine) doctors don't agree with B12 and weight loss, but I can say for me that I lost A LOT on it, and continue to do so. It is about the only thing that has changed in my diet/exercise in the past year or more.

My team of Dr's are excellent, and I never have to hesitate to call in, or be seen for anything at all. THey keep very close check on my B12 numbers.

I hope that you feel better soon. THe first few months my numbers went up, thus I felt much more energetic. Now, I don't notice anything at all, lol. But I do have other issues.

I hope the 3 of you have a great holiday.

Thanks for your replies and well wishes. And thanks to those of you with similar stories! It really helps to see people doing well after all of this! I do hope that this is the beginning to the road to recovery. I'm hopeful for the first time in a while!

luvmarypoppins: I actually had my thyroid blood work done about 6 months ago and it came back OK, so this new doc felt comfortable not testing for that again.

Nette: My doctor did say that too about the liver's stores of B12, and that it's usually an indication of rock bottom once you start having the symptoms. It's scary to me that I've had these symptoms (some of them) for 2 years!!

mommasita: Hey there! Thanks for sharing your success with B12 therapy. It really does give me hope to see that my life may return to normal!! And thanks for the holiday wish! We're celebrating our 3rd Christmas as a family of 3!! It's very exciting!