B12 Question

[Aimes]

I know B12 has been a hot topic this week, which is lucky for me since Dr. Goodman diagnosed me with a severe deficiency a couple weeks ago. I'm going to backtrack a little bit for those who don't know or remember my story.

I've had POTS my entire life and had learned to manage it with no meds (didn't tolerate their side effects). Then, in December I had my gallbladder removed and it all went down hill. I started having episodes of nausea, severe shaking, cold sweats, tachycardia, tense arm and leg muscles followed by muscle weakness, tinnitus, blood shot eyes, etc. The episodes were first triggered by eating and also occurred at night time as I was about to fall asleep. After living on broth and losing 25 pounds, I was slowly able to integrate real food back into my diet. I started an H1 & H2 blocker around the same time that I was able to start eating again (not sure if that's coincidence or not).

A couple weeks ago, I went to Dr. Goodman and repeated all the testing. I have symptoms of Hyper POTS, but the catecholamine test ruled it out, I have hyper mobility, too. The only real things that showed up on the tests was "rip-roaring POTS" (Dr. G.s words), mild anemia, and the severe B12 deficiency. We decided I should stop the mast cell meds and start supplementing with iron and B12. That was about 2 weeks ago and this week has been terrible again. Having some of those same old symptoms.

I guess my major question is if any one has had these same symptoms and had them corrected by B12 supplementation. I feel like I'm in a POTS category of my own! I don't understand why this B12 issue would suddenly act up after surgery? I completely trust Dr. Goodman. He is amazing and so helpful. Just wondering if anyone has had a similar experience? From what I've read, B12 deficiencies aren't something that can happen suddenly so I'm a little confused about why the symptoms would start suddenly after this surgery! Ugh! Maybe I should just go to medical school so I can try to wrap my head around all of this! :-)

[Aimes]

Ok, I should have done more research before asking this! Ha! Apparently, nitrous oxide can deplete the B12 level that is actively in your body (not the level in storage). So, if you have a low B12 level and are then exposed to nitrous oxide (like I was for surgery) you can have severe symptoms within days. I'm attaching an article that probably explains it better than I can. This is important for people with B12 deficiency to know, though. Very interesting! I live when the pieces start falling together!

http://www.medmerits.com/index.php/article/vitamin_b12_deficiency/P13

[looneymom]

What is the catecholamine test? Is it a blood or urine test? Our cardiologist is suspecting my son may have hyper pots. Testing has been discussed, but due to his current condition, the testing might make him worse. Is this a test that is performed while on the tilt table?

My son had trouble with low iron but his B12 was on the high side. When you supplement with iron, just remember not to take it with milk. Calcium interferes with its absorption.

[Joann]

It was discovered that I was deficient in vitamin d and vitamin b12. I have been getting vitamin b12 shots for about 6 months. I am not sure if they have helped or not, but they haven't hurt me. For me I think I became deficient because I was having trouble eating/digesting anything, then they prescribed ppi's, which also can make it difficult for your body to absorb vitamins. So malnutrition and not being able to absorb vitamins probably caused my deficient. I am sure that made my symptoms worse, but weren't the cause. But once I was able to eat more normally again and gain weight and fixed the deficiency, i did become stronger and felt better in between flares.

I am sure getting enough vitamins into your body will help you feel better, but not sure if it will help your POTS.

[Aimes]

Looneymom, for the catecholamine test they insert an IV into your arm and then have you lie in a dark, quiet room for 30 minutes. A nurse then sneaks in and does a blood draw from the IV and take blood pressure and pulse. Then you stand for ten minutes (if you can) and they do another blood draw and pulse and blood pressure reading. I'm not an expert on all the things the test looks at but I know one of them is norepinephrine levels. If you have hyper POTS, your norepinephrine levels will increase a lot upon standing. Mine always increases but not to the point of being Hyper.

Joann, I agree that the B12 won't be my cure. I wish! Haha! I'm ok with having my normal POTS symptoms. I've literally had them since I can remember. It's all this new muscle weakness, nausea, shaking, ringing ears that's driving me crazy. I just want to go back to my usual heart and blood pressure issues! Haha! How sad is that? Dr. G. also suspects mine could be a malabsorption issue. I really wish they could just get to the bottom of all this!

[looneymom]

Aimes, I think everyone on this forum would like a magic pill to make all these symptoms go away. So sorry you are having to deal with new symptoms.

[Rachel Cox]

How much B12 are you having? Are you getting enough to address the deficiency?

[issie]

I just listened to a webinar (Dr. Nancy Mullan) on methylation pathways and what to do for known genetic mutations in that pathway. There are some that require more B12 and it could bring some significant improvements --according to what the docs who are working with this are finding with their patients. She said that one can have high serum levels of B12 - yet it won't be going into the cells properly. They are suggesting homeopathic amounts of lithium to get the body to uptake the B12 into the cells. Now whether or not there is anything at all to this. I can't say. But, that was an interesting thought to me. This doctor said that most of the people they check lithium levels on are severely defective in this mineral. She was suggesting that people start out with the tip end of a toothpick dipped in water and then dipped into the mineral and working up to more. She said that many are so sensitive to the addition of new supplements that you have to introduce them very slowly. Can't say if this would help or not ---just passing along the info.

Issie

[Guest Alex]

here is some info on vitamin b12 from the office of dietary supplements

http://ods.od.nih.gov/factsheets/VitaminB12-HealthProfessional/

Alex

[cupcakemomma5]

I truly find it interesting how many of us are dx with low B12 and low Iron.

And how are bodies are either absorbing them or not. What's the correlation between ANS and vitamin/mineral absorption?

I am on the end of not being able to absorb them and am being put through the ringer with scopes.

If anyone has suggestions for test that I can ask my doctor for that would be great! Cuz I am tired of being probed....lol

Aimes, as for your symptoms, maybe they were being camouflaged by something else, and the stress your body (and mind) were under from the surgery triggered some wacky side effects. Keep me posted on how you are doing : )

[Aimes]

Sorry I haven't responded in a while. It was a hectic weekend!

Looneymom, a magic pill would be fantastic! I would pay a lot of money for one! :-)

Giraffe, he has started me with 1000mcg daily in pill form. I wonder if I should be taking more but he's the expert! :-) I'm going to take it for two more weeks and them I'm supposed to call him. He mentioned re-testing my levels to make sure my body is absorbing the oral form. If not, we'll switch to injections.

Issie, that is really interesting. I think I'll ask Dr. Goodman his thoughts when I check in with him.

Thanks for the link Alex!

Cupcake, Dr. G. said he thinks we have malabsorption, too, but hasn't put together the pieces of why. I really went backwards this week and the only thing I can contribute it to is the fact that he had me stop the Zyrtec and Zantac. Dr. Goodman thinks my symptoms were a combination if things. My B12 was already really low and then during surgery they gave me nitrous oxide which further depleted my levels. Dr. Goodman also suspects that us POTSies have tendencies to be easily triggered into autoimmune reactions. He said if I ever have surgery again, I'll need to have Prednisone right away to keep my system in check! If only I had known that sooner! :-)

[issie]

I learned years ago with so many surgeries that I have to be administered cortisol IV with the surgery. Every since they started doing that, I don't crash so bad with the surgery. I just tell the surgeon that with past experience I'll crash without it and they give it to me.

Issie

[Aimes]

You are full of good advise Issie! Thank you! :-) I've had this horrendous condition for 27 years, but this year has made me feel like a newbie! I guess that's what I get for thinking I was improving and letting my guard down! Ha! Stupid POTS!

[issie]

I hear you - it continues on --doesn't it. My first remembrance was when I got sick at age 8 - but, I'm sure I was born with it and I'm 53 now (was sick with sore throats and earaches and intestinal issues since I was born). So, how many years is that. TOO MANY!!!! I picked up some tips along the way. Hope it helps you next time around.

Issie

[Aimes]

That is too many years, Issie! Ugh! I can relate to the constant illnesses. I was constantly sick as a child. I actually feel like that part has improved (knock on wood)! I'm glad you've found some things that help you and I hope it just continues to get better! Thank you again for your kind words and pointers! :-)

[issie]

Yeah, I have hypergammaglobulinemia. Didn't get the DX until in my late 40's. But, really - now I don't get sick that much either. But, when I do --it really knocks me down.

Issie