So, I am three months out from catastrophic medical crisis.

[KidsHappen]

We had to call an ambulance on April 2 because I was dehydrated, malnourished, unable to walk or even stand and hadn't been able to urinated for over 24 hours. It turns out I had severe neuropathy including brain issues due to vitamin B12 deficiency. Doctors said it was probably years in the making. I spent a week in the hospital and three weeks in inpatient rehab. I have been home for two months and back upstairs in my own room again for a month. I have a home PT three days a week and am learning to walk again as a senior. I need an afo brace on both feet and I can still only manage walking or even standing with assistance of a walker or a person with use of my gate belt. Still using a wheelchair quite a bit and have to change positions from sitting to lying down frequently due to severe numbness/tingling and pain in legs and feet.

This has affected my whole body. Serious cognitive issues, blurred eyesight, wonky blood pressure and pulse (sometimes very high, other times dangerously low), the numbness/tingling and pain in both hands and feet, limited use of both, still have trouble with using the bathroom at times and just so much more. I had no idea that B12 was so important for almost every function in the human body. Several of my doctors said that they had never seen such a bad case. I am still looking at 9 more months of recovery and they are not sure I will even fully recover. Physically I am about where my 18 month old dgd is. She can walk better than I can but I have more upper body strength and of course experience. Cognitively at a fourth grade level with math and problem solving a little more advanced in language. I have significant memory issues. I am probably in the best possible situation to handle this though. I am strong, resilient, have good insurance and an excellent support system and luckily I have been able to keep my emotions pretty stable (I am bipolar and emotional instability is a possible problem with severe B12 deficiency). My hubby works from home so I am rarely alone in case of difficulty. I am working on my PT and otherwise confined to my room but I have my computer, a stack of books and a bag of snacks so I am good to go for now. I always said that when I got old I was going to retire to my recliner and read all the books that I own and now I have a chance to do that. Its all good. 

[Tap]

Wow, that is a lot to have happen all at once! I am so happy you are getting care and that you are home recovering! I really hope you continue to improve and are back to your old self ASAP!!

[fraidycat]

Oh my goodness! I'm glad that you are on the mend now, but that must have been so scary. 
 

Do they know how & why you got so deficient so that they can help to make sure it doesn't happen again?

[popmom]

I am so sorry you had to go through all that! Thank you for sharing your story and making us aware that this is even an issue. Is there anything that would predispose someone to being severely B12 deficient? 

[MercyA]

Oh my goodness!!! I am so glad you are okay! 

Do you take lithium for your bipolar disorder, by chance? Do the doctors think it was a contributor? I know that it can lower B12 levels.

Prayers for your healing, peace, and comfort! 

Edited July 6, 2021 by MercyA

[Catwoman]

I’m so glad you’re back — I was wondering if you were ok. 

You have been through so much and I am amazed and so impressed by your positive attitude! 

Hoping and praying that your recovery will be complete — and quicker than anyone expects!

[Ottakee]

Glad you are doing better.  I know my girls' doctor has them in extra Vit B12.  They have mental health concerns as well.

[Arcadia]

21 minutes ago, popmom said:

Is there anything that would predispose someone to being severely B12 deficient? 

My doctors and specialists always ask me to watch my B12 (and B Complex) to help with stress since elementary school time. My blood panel tests are always wonky when I go on a vegetarian diet for a month or more since I was a small kid.

https://www.mayoclinic.org/diseases-conditions/depression/expert-answers/vitamin-b12-and-depression/faq-20058077
“Low levels of a vitamin can result from eating a poor diet or not being able to absorb the vitamins you consume. Older adults, vegetarians and people with digestive disorders such as celiac disease or Crohn's disease may have trouble getting enough B-12. Sometimes a vitamin B-12 deficiency occurs for unknown reasons. Your doctor may order a blood test to check levels of B-12 or other vitamins if a deficiency is suspected”

https://www.health.harvard.edu/blog/vitamin-b12-deficiency-can-be-sneaky-harmful-201301105780

“Plants don’t make vitamin B₁₂. The only foods that deliver it are meat, eggs, poultry, dairy products, and other foods from animals. Strict vegetarians and vegans are at high risk for developing a B₁₂ deficiency if they don’t eat grains that have been fortified with the vitamin or take a vitamin supplement. People who have weight-loss surgery are also more likely to be low in vitamin B₁₂ because the operation interferes with the body’s ability to extract vitamin B₁₂ from food.

Conditions that interfere with nutrient absorption, such celiac or Crohn’s disease, can cause B₁₂trouble. So can the use of commonly prescribed heartburn drugs, which reduce acid production in the stomach (acid is needed to absorb vitamin B₁₂). The condition is more likely to occur in older people due to the cutback in stomach acid production that often occurs with aging.

Vitamin B₁₂ deficiency symptoms

Vitamin B₁₂ deficiency can be slow to develop, causing symptoms to appear gradually and intensify over time. It can also come on relatively quickly. Given the array of symptoms a vitamin B₁₂ deficiency can cause, the condition can be overlooked or confused with something else. Vitamin B₁₂deficiency symptoms may include:

• strange sensations, numbness, or tingling in the hands, legs, or feet
• difficulty walking (staggering, balance problems)
• anemia
• a swollen, inflamed tongue
• difficulty thinking and reasoning (cognitive difficulties), or memory loss
• weakness
• fatigue

While an experienced physician may notice the symptoms and be able to detect a vitamin B₁₂ deficiency with a good interview and physical exam, a blood test is needed to confirm the condition.”

[Ausmumof3]

Wow I’m so sorry!  And yes B vitamins are so important.  Hope that your recovery continues to progress. I ended up on them due to obvious physical signs that the dr noticed at an appointment (cracked lips that didn’t resolve with lip balms etc) but the biggest difference was how much clearer I felt in myself when I remember to take them.  

Edited July 6, 2021 by Ausmumof3

[KidsHappen]

I am an older woman, I wasn't eating well and I am taking a PPI (prescription antacid) for esophageal erosion. I had many of these symptoms for years and it just slowly progressed for the longest time. I have always had fragile health so I just thought that I was getting old and that the symptoms were from other issues until the crash. Plus cognitively I wasn't at my best so I wasn't making the connections I needed to make to catch it. Now that I know and can treat it is possible that I will eventually feel better than I have in years. 

[Melissa in Australia]

Hugs

Really admire your positive attitude

[Laurie]

That must have been so frightening!  I'm so glad you're able to continue your recovery at home now.

My cat gets B12 injections, and my dh is supposed to take sublingual B12 because of a medication he takes (metformin maybe? )  I'll have to check with him to make sure he's taking it because he doesn't like to take vitamins.  

I hope you enjoy your books while you're recovering! 

[MercyA]

Count me as another who is impressed with your attitude and fortitude.

I'm sure you sharing this will be helpful to others as well. 

[KidsHappen]

45 minutes ago, MercyA said:

Oh my goodness!!! I am so glad you are okay! 

Do you take lithium for your bipolar disorder, by chance? Do the doctors think it was a contributor? I know that it can lower B12 levels.

Prayers for your healing, peace, and comfort! 

I don't take lithium but the PPI (prescription antacid) was probably a contributor. I have been on it for years and I wasn't warned to be on the lookout for trouble. I can't stop it because I have esophageal erosion that gets so bad I can't even swallow liquids without it. I had weeks of B12 injections and have to strongly supplement for the rest of my life. I would have done that already if I had known.

[KidsHappen]

1 minute ago, Laurie said:

That must have been so frightening!  I'm so glad you're able to continue your recovery at home now.

My cat gets B12 injections, and my dh is supposed to take sublingual B12 because of a medication he takes (metformin maybe? )  I'll have to check with him to make sure he's taking it because he doesn't like to take vitamins.  

I hope you enjoy your books while you're recovering! 

Yes metformin can also cause B12 deficiency, the knowledge of which has caused us to reevaluate my hubby's meds as well.

[Laurie]

2 minutes ago, KidsHappen said:

Yes metformin can also cause B12 deficiency, the knowledge of which has caused us to reevaluate my hubby's meds as well.

I'm thankful my dh's doctor told him about this possibility, but now I'm worried that dh hasn't been taking it.  He had been buying B12 at Costco...and he always did the Costco shopping but stopped going there when the pandemic started.  I shop weekly at the grocery store and pick up my synthroid at the pharmacy every few months (dh gets his prescription by mail), but now that I'm thinking about it he hasn't asked me to buy any B12 for him.

Thank you for this reminder to keep up with B12!!!

[KidsHappen]

1 minute ago, Laurie said:

I'm thankful my dh's doctor told him about this possibility, but now I'm worried that dh hasn't been taking it.  He had been buying B12 at Costco...and he always did the Costco shopping but stopped going there when the pandemic started.  I shop weekly at the grocery store and pick up my synthroid at the pharmacy every few months (dh gets his prescription by mail), but now that I'm thinking about it he hasn't asked me to buy any B12 for him.

Thank you for this reminder to keep up with B12!!!

Yes, I am not sure that most doctors have this forefront of their mind. My husband has had numbness/tingling in his feet for years now. He has been to a neurologist a few times and she never mentioned a concern about his metformin or the need for B12 supplement. If this hadn't happened to me it could have happened to my hubby. Now we know to reconsider the metformin (he is not currently diabetic) and to make sure he takes his B12.

[KidsHappen]

1 hour ago, popmom said:

I am so sorry you had to go through all that! Thank you for sharing your story and making us aware that this is even an issue. Is there anything that would predispose someone to being severely B12 deficient? 

Yes, see Arcadia's post above. Also it is my understanding that there can be a genetic issue regarding IF (the chemical that allows one to process B12) in the stomach that can make a person unable to process B12. That issue seems a little more complicated. For most people it comes down to diet, medications or issues with digestive system including bariatric surgery.

Edited July 6, 2021 by KidsHappen

[Arcadia]

8 minutes ago, KidsHappen said:

Also it is my understanding that there can be a genetic issue regarding IF (the chemical that allows one to process B12) in the stomach that can make a person unable to process B12. That issue seems a little more complicated.

@popmom congenital pernicious anemia is genetic

https://medlineplus.gov/ency/article/000569.htm

“In rare cases, pernicious anemia is passed down through families. This is called congenital pernicious anemia. Babies with this type of anemia do not make enough intrinsic factor. Or they cannot properly absorb vitamin B12 in the small intestine. 

In adults, symptoms of pernicious anemia are usually not seen until after age 30. The average age of diagnosis is age 60. 

You are more likely to develop this disease if you:

• Are Scandinavian or Northern European
• Have a family history of the condition 

Certain diseases can also raise your risk. They include:

• Addison disease
• Graves disease
• Hypoparathyroidism
• Hypothyroidism
• Myasthenia gravis
• Loss of normal function of ovaries before 40 years of age (primary ovarian failure)
• Type 1 diabetes
• Testicular dysfunction
• Vitiligo
• Sjögren syndrome
• Hashimoto disease
• Celiac disease

Pernicious anemia can also occur after gastric bypass surgery.”

[TechWife]

I’m sorry to hear of your difficulties. That is truly scary. I was diagnosed with anemia and B12 deficiency in February of this year. I have lost the feeling the in back 1/3 of my tongue & about 1/2 way down my throat on the left side. I’ve been trying to get that addressed for a couple of years as it was progressive. I have to be very careful of what I eat, how fast I eat and how thoroughly I chew. Now that I have the deficiencies diagnosed, my ENT has put the clues together. I recently had an MRI to trace the glosopharengeal nerve to see if it has sustained permanent damage & am waiting on those results. So far the treatment has been oral supplementation, we are monitoring blood test results. It has helped my attention span quite a bit, but I am still forgetful. I had no idea how all encompassing B12 is - the cognitive impact has surprised me greatly. 

[prairiewindmomma]

Hugs!

[YaelAldrich]

Oh wow! I'm so sorry to hear about this. A woman in our community is suffering from the same thing. She's not a vegan or vegetarian so I'm not sure how this happened to her. She can barely walk and she is very jumbled. Sadly, she and her husband are hoarders and we community helpers are trying to figure out how we can help them without massive changes in their lives. She has a 3x3 ft area she can easily move in and can't get to the door or toilet easily by herself. I hope you have a good support network and you get better quickly.

[kbutton]

 

2 hours ago, KidsHappen said:

Yes, see Arcadia's post above. Also it is my understanding that there can be a genetic issue regarding IF (the chemical that allows one to process B12) in the stomach that can make a person unable to process B12. That issue seems a little more complicated. For most people it comes down to diet, medications or issues with digestive system including bariatric surgery.

Did they rule out pernicious anemia in your case? If you have it, injections into muscle are the only way you'll absorb the B12. 

[KidsHappen]

35 minutes ago, kbutton said:

 

Did they rule out pernicious anemia in your case? If you have it, injections into muscle are the only way you'll absorb the B12. 

Well I didn't know to ask that question at the time but I am pretty sure that is not the case for me because my hemoglobin and hematocrit were normal and they only had me continue injections for two weeks after I came home. I will ask at next appointment though.

[mommyoffive]

I am so sorry to hear this.  I am sending so many prayers and good thoughts your way.  I am so glad you have good support.  

[klmama]

((KidsHappen)) I'm glad you're improving!  Thanks for sharing your experience, so we can learn from it.  Thanks, also, for sharing your great attitude.  I appreciate the reminder to seek the good in hard situations.  

[ktgrok]

15 hours ago, KidsHappen said:

I am an older woman, I wasn't eating well and I am taking a PPI (prescription antacid) for esophageal erosion. I had many of these symptoms for years and it just slowly progressed for the longest time. I have always had fragile health so I just thought that I was getting old and that the symptoms were from other issues until the crash. Plus cognitively I wasn't at my best so I wasn't making the connections I needed to make to catch it. Now that I know and can treat it is possible that I will eventually feel better than I have in years. 

Yes - with PPIs they really need to be better about monitoring people's nutritional status! I'm on on as well, and can't come off either. (well, I could maybe if I had another bariatric surgery, but we all agree that the medication is better than a more invasive surgery, for now). I am monitored every 6 months for vitamin deficiencies per my Bariatric doctor, and my primary put me on magnesium daily now too, as new research has come out that PPIs reduce absorption of magnesium. I've been having muscles cramps a lot and that was probably why. Our bariatric classes emphasized that by the time you have symptoms of a vitamin deficiency the damage can be permanent, so to take the vitamins and get the labs done on schedule. Too often people would decide they felt okay and skip it. In your case though you didn't know you were supposed to be monitoring this stuff, which just sucks. I'm sorry. 

[ktgrok]

Did they test you for Celiac? If not, you really do need to be tested for it. 

[madteaparty]

To the OP—Oh wow. Thanks so much for posting this, I cannot believe all you’ve been through.

For everyone—are there some B12 vitamins that are better than others or are they all interchangeable? I occasionally take the jarrow lozenges but it seems we all need to give this some thought! 

[KidsHappen]

2 hours ago, ktgrok said:

Did they test you for Celiac? If not, you really do need to be tested for it. 

I have been checked for celiac and Crohn's and don't have either.

[Spryte]

Oh my, I hope you feel better and better.  How frightening!

@ktgrok what kind of labs did they suggest in your classes?  Taking notes here.

[Arcadia]

15 hours ago, YaelAldrich said:

Oh wow! I'm so sorry to hear about this. A woman in our community is suffering from the same thing. She's not a vegan or vegetarian so I'm not sure how this happened to her.

Drug interactions or genetically disposed. Sometimes it’s so hard to figure out.

18 hours ago, KidsHappen said:

I don't take lithium but the PPI (prescription antacid) was probably a contributor.

I think most doctors do not remember all the drugs side effects and my university doctor would give out PPI if needed and assume we read the drug literature ourselves. 

18 hours ago, Laurie said:

My cat gets B12 injections, and my dh is supposed to take sublingual B12 because of a medication he takes (metformin maybe? ) 

Don’t take Vit C with Vit B12. I didn’t know that.

https://www.mayoclinic.org/drugs-supplements-vitamin-b12/art-20363663

“Interactions

Possible interactions include:

• Aminosalicylic acid (Paser). Taking this drug used to treat digestive problems might reduce your body's ability to absorb vitamin B-12.
• Colchicine (Colcrys, Mitigare, Gloperba). Taking this anti-inflammatory drug used to prevent and treat gout attacks might decrease your body's ability to absorb vitamin B-12.
• Metformin (Glumetza, Fortamet, others). Taking this diabetes drug might reduce your body's ability to absorb vitamin B-12.
• Proton pump inhibitors. Taking omeprazole (Prilosec), lansoprazole (Prevacid) or other stomach acid-reducing drugs might decrease your body's ability to absorb vitamin B-12.
• Vitamin C (ascorbic acid) supplements. Taking vitamin B-12 with vitamin C might reduce the available amount of vitamin B-12 in your body. To avoid this interaction, take vitamin C two or more hours after taking a vitamin B-12 supplement.”

[ktgrok]

22 minutes ago, Spryte said:

Oh my, I hope you feel better and better.  How frightening!

@ktgrok what kind of labs did they suggest in your classes?  Taking notes here.

I think in the beginning they may have added in other b-vitamins as folate can cause nausea early post op, but normally B12 and Ferritin and Vitamin D are checked every 6 months. It is more frequent in the first year. I take a bariatric multi with iron and a crap ton of b12 in it, plus am to take an additional B12 once a week - that is standard for all their bariatric patients. Then if there are actual deficiencies they adjust. Like I'm taking extra iron now, for instance. Oh, and D...I forget what amount they said as standard but I do 5K at least or I get low. 

[JumpyTheFrog]

18 hours ago, KidsHappen said:

Also it is my understanding that there can be a genetic issue regarding IF (the chemical that allows one to process B12) in the stomach that can make a person unable to process B12. 

Autoimmune gastritis is where the immune system attacks the cells in the stomach that make the intrinsic factor needed to absorb B12. I listened to the spoken version of this article about it yesterday. 

Quote

Nausea, a sore stomach, fatigue, and pins and needles. While these may seem like vague and varied symptoms, they can all be the result of a chronic inflammatory condition of the stomach known as autoimmune gastritis.

Figures suggest around 2% of the U.S. general population, or around one in 50 people, has autoimmune gastritis [1].

 

[JumpyTheFrog]

I really think that doctors need to start regularly screening people for vitamin D and B12 deficiencies. I'm sure other deficiencies would also be helpful. Someone just needs to do studies that show that insurance companies would save money in the long run.

[Jean in Newcastle]

22 minutes ago, JumpyTheFrog said:

I really think that doctors need to start regularly screening people for vitamin D and B12 deficiencies. I'm sure other deficiencies would also be helpful. Someone just needs to do studies that show that insurance companies would save money in the long run.

I agree but there is a weird circle thing where an insurance company won't pay for vitamin D testing (don't know about B12) unless there is a demonstrated need.  Ie. the doctor has to know that there is a deficiency or at least a strong chance of a deficiency before ordering the test or the patient risks having to pay out of pocket if vitamin D levels come out "normal".  I put "normal" in quotes because despite raising the minimum level, I still think that the norms are too low for healthy vitamin D levels. 

[Rebel]

Someone please tell me I am not the only one who ordered both B12 and Vitamin D supplements after reading this thread.

[Amy in NH]

How scary for you!  I hope you continue to recover quickly.

I have been taking B12 for B-12 deficiency & anemia, which I didn't know was a thing until I was diagnosed.

Did you know there is a B-12/COVID link?

Edited July 7, 2021 by Amy in NH

[JumpyTheFrog]

1 hour ago, Rebel said:

Someone please tell me I am not the only one who ordered both B12 and Vitamin D supplements after reading this thread.

I ordered testing for both back in February through Ulta Wellness. I just haven't gotten around to getting the blood drawn yet.

[JumpyTheFrog]

2 hours ago, Jean in Newcastle said:

I agree but there is a weird circle thing where an insurance company won't pay for vitamin D testing (don't know about B12) unless there is a demonstrated need.  Ie. the doctor has to know that there is a deficiency or at least a strong chance of a deficiency before ordering the test or the patient risks having to pay out of pocket if vitamin D levels come out "normal".  I put "normal" in quotes because despite raising the minimum level, I still think that the norms are too low for healthy vitamin D levels. 

I agree that the "normal" levels aren't high enough. The MedCram videos on vitamin D clearly show that higher levels prevent more illness.

I am really starting to think that we need a government agency or university that just does proper randomized control trials with enough participants on cheap things like vitamins, minerals, and herbs to show what they can help with. (They'd also have to test the supplements to make sure they contain what the label says.) Big Pharma mostly wants to focus on blockbuster drugs. They don't want to spend the money showing that vitamin xyz can keep people out of the hospital or off an expensive drug.

Edited July 7, 2021 by JumpyTheFrog

[KidsHappen]

1 hour ago, Amy in NH said:

How scary for you!  I hope you continue to recover quickly.

I have been taking B12 for B-12 deficiency & anemia, which I didn't know was a thing until I was diagnosed.

Did you know there is a B-12/COVID link?

No, I didn't but I did consider myself lucky to come out of rehab without covid given that I am and pretty much everyone there was an at risk population. I have been homebound since then and my hubby works from home so I don't worry as much as I would otherwise.