NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › The Latest Research › hiGH B12 ANYONE? HYPERADRENERGIC POTS Dr. Diana pls help I am newbie
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November 12, 2013 at 5:20 pm #612StayingstrongParticipant
I know eds folks are usualy low in Vit D, as I am, and calcium, me too, and other stuff. but my blood test for b12 came back High at 1300. Anyone else have this? I checked my med chart and my pcp has me as Polycythemia acquired? She NEVER discussed this diagnosis with me. and from what I googled its NOT good. Could this b12 test be wrong? I have NOT been taking b12 supplements. Do any of you have this diagnosis too? I would like to ask Dr Diana if this is happened to eds/adrenergic pots,folks, my standing norepineprine was 841 but dopamine 0? if I am reading the results correctly. Someone told me that having a high b12 means my gut has issues and that I am really defiecient in b12 is this correct? what additional tests should my doctor run? I googled highb12 and it said bone marrow test! ct scan, ultrasound, it Said either liver issue, leukemia, polycythemia, or could MCAD Mastcytosis be causing highb12? Please Dr Diana help me with info!. thank you I am desperate
November 13, 2013 at 11:46 pm #4592charlie1ParticipantHi Staying Strong. I have had hi B12 in the past also. In April 2010 it was flagged Hi at 734 pmol/L and I was told to stop taking supplements which I did. April 2012 (2 yrs later) it was checked again and it had risen to 1097!
It was at that time my health really started to deteriorate (eventually developed into POTS and dysautonomia).My functional medicine doctor told me to go on a very strict gluten-free diet in hopes it would help my various disabling symptoms and perhaps some of my wonky lab work would be corrected as well. Three months later I felt only marginally better but interestingly, my B12 had fallen to a level of 437! Also my Fibrinogen had been flagged as High and that also came down to the ‘normal’ range. I don’t understand how a gluten free diet could affect the lab numbers to such a degree yet my symptoms continued to escalate. Perhaps the no gluten is not connected at all. I’m just telling you what my lab reports said before and after the diet change.
I remember being quite concerned after googling the disorder possibilities so I understand where you’re at. Like you’re name says, “Stay strong”. If you think your doctor isn’t taking the results seriously enough, perhaps you should book an app’t to have them discussed with you.
CharlieNovember 14, 2013 at 10:24 am #4593StayingstrongParticipantHI Charlie,
thank u for responding. is all your b12 and blood work normal now? and are you any better? I am not familiar with gluten free diet, but I will try it, as if I can get the b12 down. My current doctor is a NUero at Mayo, and I must say he has been the only doctor I have seen since I got ill in 2005, that I feel is knowledable in pots/dys, none of the other doctors/cardio, neurosurgeon, pcp, oncol, endo, etc even mentioned oi/pots.dys or testing for it! and I referred myself to Mayo this past aug, as I was completely desperate, feeling this is my last chance to get answers and treatment plan and attempt to be well, and I had googled my symptoms and dysautonomia/pots had come up. So, I thought, maybe this is what I have! My cardio doc, who I was seeing in Aug told me NO she would NOT refer me to Mayo! even tho she kept telling me I was fine,(she just did the ekg, echo and treadmill for 6 min on me) I told her NO, that adrenaline keeps releasing in my body and I could feel it when it happened! the surges and anxiety,stress and panic! I was convinced it was dys/pots, anyway, she said NO to referring me, and I actually had to threaten to go to the Med
Board, so, she finally sent the referral form to Mayo. I had tried to get into Mayo by myself, self refer, and they said NO, had to be doctor refered! The Mayo doc, did tell me to drink water, up my salt, compress stockings, start little exercise 4min day, all helping a bit. but still cant control the adrenaline coming out in stress, surprise situations, loud noise, bright lights set it off, like being startled. I cant control it, taking a flexeril helps a bit, by making me sleepy and knocking me out. I have NO idea how to do the gluten free, but if it helps I will do it. are you still on it forever? thank you so much for giving me the info. I have not had a normal life since 2005 and I want to get to be as better quality , back to as much normal life I had, if I can.November 14, 2013 at 7:56 pm #4595charlie1ParticipantHi Staying Strong. I continue to have neutropenia (low level of neutrophils, a type of white blood cell) but have not had my B12 measured since July 2012 so I’m unaware if its risen again. I want to encourage you to keep an open dialogue with your doctor or if need be, get a new one. Its ridiculous that she won’t discuss the bloodwork results with you, nor why she mentioned Polycythemia. If you’re anxious about your blood work results, your doctor needs to address your concerns and you have every right to ask her to do so.
re: B12 – Please know that I have NO IDEA if my gluten-free diet lowered my B12 level or if it was coincidence. All I know is that it was high and then it came down. Honestly I don’t understand how it could have dropped so dramatically through a diet change when I don’t see any literature regarding that other than B12 being related to gut absorption.?? It’s quite confusing to me! When I went on the very strict gluten-free diet, I lost weight which I didn’t anticipate or need to happen as I was thin to begin with. My choice of foods was limited and I was not a happy camper. Also, my symptoms continued to escalate so my disease process was in place by then and the gluten-free diet did nothing to make me feel better. As I said, the B12 level dropping may have been due to something else going on in my health crisis and may havehad nothing to do with the food changes. So, please discuss with your doctor first if you decide you want to go that route.
re: dysautonomia/OI – Unfortunately, I’ll admit my illness continues and I, like you, keep searching for answers.I have found a wealth of information on dinet.org POTS and dysautonomia. Perhaps there you will be able to find answers to your questions regarding your adrenaline rushes and possible drug treatments for your illness.
I know how frustrating and depressing this can get. I feel for you and sincerely wish you all the best in your quest for better health.
Charlie
November 16, 2013 at 5:51 pm #4596charlie1ParticipantNovember 16, 2013 at 5:52 pm #4597November 16, 2013 at 10:32 pm #4598charlie1ParticipantStaying Strong – Above, I’ve attached 2 links that you might like to research. One is a powerful video and the other is a very informative paper, both discussing B12 deficiency. On page 10 of the journal (2nd link), 1st paragraph talks about how Hi B12 can actually point to a B12 deficiency (when not supplementing) I’ve heard that before but this is the first time I’ve seen it in a medical journal.
Hopefully this helps you understand the workings of B12 a bit more.
CharlieNovember 17, 2013 at 8:27 pm #4600BarbaraParticipantIt’s a very informative video Charlie, thank you. It certainly makes you think and helps you understand why the problem is not spotted more by GP’s. I daresay there’s much content that many of us can relate to, especially in the lists of symptoms and in the accounts of other peoples experiences. I have been tested for stomach acid production and mine’s low, which I believe leads to absorption issues. I’m currently having B12 injections. Fingers crossed it might reverse, or eradicate some of my MANY symptoms.
Barbara
(UK)November 18, 2013 at 12:39 am #4601charlie1ParticipantGlad to have shared Barbara 🙂
I have had very high stomach acid making it necessary for me to use daily PPI’s. I’m learning now that PPI’s and H2 receptors may cause the acid to become too low after some time which as you say, might lead to absorption problems. I have recently found out about a sublingual B12 supplement that may work better for those like us.
I would like my B12 levels checked again through the more preferred/accurate bloodtests that were mentioned in the above links. Looking into it.
CharlieNovember 19, 2013 at 1:32 pm #4605Dr. DianaKeymasterHi everyone, This is a fascinating thread — something I just started looking into myself, because my B-12 levels were so high! I’ve been gluten-free for a long time, so for me, I don’t *think* that’s it… I WAS doing B12 injections, and have since stopped those (but am continuing with a balanced B vitamin) and will recheck levels later. Googling was a bit scary, as I’ve been considering eosinophil involvement. That can cause a lot of pain, and is VERY hard to treat, apparently. So, silly question, but have any of you experienced muscle wasting/pain and/or frozen shoulder, thoracic outlet syndrome, that sort of thing? Does any one have an enlarged liver, or suspect it (uncomfortable sensation under your lower ribs, right hand side? I’m considering calling some eosinophil specialists. Thanks, all! And Charlie1, thanks for talking us down from the ledge and for the vids (I will watch in a bit). 😉
November 19, 2013 at 3:01 pm #4606Dr. DianaKeymasterStaying Strong – Above, I’ve attached 2 links that you might like to research. One is a powerful video and the other is a very informative paper, both discussing B12 deficiency. On page 10 of the journal (2nd link), 1st paragraph talks about how Hi B12 can actually point to a B12 deficiency (when not supplementing) I’ve heard that before but this is the first time I’ve seen it in a medical journal.
Hopefully this helps you understand the workings of B12 a bit more.
CharlieExcellent info Charlie1! What I think happens to some of us if a decrease in intrinsic factor (which may have occurred when you were on gluten). I know many people who were incorrectly diagnosed with M.S., when cutting out gluten was all they needed to start to turn the corner. 🙁 With gastroparesis and digestive problems affecting most of us (and don’t even get me started on the MTHFR issues, folate supplementation disguising the B-12 deficiency, etc), I do think that lack of balance is a huge problem. And please don’t forget that B12 should be given in the muscle, not “subQ”. (Yes, I made that mistake for a while! 😉 Since I woke up with tingly hands for the first time since I stopped B12 supplementation (because of high blood levels), I decided to go back on it! The article was a big help. I’ll let you all know what happens with my blood levels (and new tinglies). Thanks again!
November 19, 2013 at 7:41 pm #4607BarbaraParticipantYou ask:
1) have any of you experienced muscle wasting/pain
2) and/or frozen shoulder,
3) thoracic outlet syndrome, that sort of thing?
4) Does any one have an enlarged liver, or suspect it (uncomfortable sensation under your lower ribs, right hand side?1) yes, both muscle wasting and muscle pain
2) No.
3) I once had a numb left arm, following a simple physio assessment a couple of months after my accident. I experience intermittent degrees of tingling in my lower arms. I drop things a lot and I think some of this is due to the tingling. Also I cannot work with my arms in the air, as pain soon sets in.
4) Yes I suspect an enlarged liver (and sometimes have abnormal liver test results)
Barbara
(UK)November 20, 2013 at 10:41 am #4608charlie1ParticipantYesterday my vitals were bad. BP 84/59 p.76 with pulse later dropping to 44. Experienced pain in left upper rib while being cognitively impaired/major weakness episode. That pain has happened occasionally in the past. Guessing maybe not enough O2 reaching vital organs such as brain and spleen?
1) have any of you experienced muscle wasting/pain
2) and/or frozen shoulder,
3) thoracic outlet syndrome, that sort of thing?
4) Does any one have an enlarged liver, or suspect it (uncomfortable sensation under your lower ribs, right hand side?1) if there’s such a thing as being dx w muscle wasting, NO, but visually Yes
2/3 PT has said my upper R neck/shoulder pain is just like TOC although he feels its actually caused (in my case) by elbow continuously coming out of joint causing everything above it to be stretched too far.. domino affect. Yes, pain with that!
4) No but do have occasional pain under left upper rib
November 20, 2013 at 2:17 pm #4609StayingstrongParticipantthank u Charlie
I am going to checkout the video info
Yes, the gluten free stuff is sooo limiting! There is not much to eat! only been on it for a few days, and it is very expensive! I am thin, like you ,110 lbs, so I don’t want to lose weight either, so far no weight loss. I am having rice hot cereal and fruit for breakfast, morning snack KInd bar. Lunch cheese meat sandwhich, afternoon snack, dinner chicken /veggies. I did have to get gluten free chips!! found them! now is there a gluten free ice cream or candy?? Found sprinkles gluten free cupcake!! I have had a time, about 15 months ago where my weight went down to 98 lbs, no reason we could find, I was eating all my normal foods. Just as it had lost weight, it stayed like that for about 2 months then it all came back in about 3 weeks! Very strange. Then another time I bloated/gained to 117 and yet, I had not changed my eating at all. This has only happened one time for each, I cant explain it. I have NOT taken any b12 supplements, it is strange , I thought I would show low/defienct in b12.
I did just call my dr at Mayo, but so far he has not scheduled me in to discuss the labs and what to do about the high b12 level. be well and thank u , again for all your help/info. I am at my wit’s end with not being able to work, clean my home, do activities with my child. I am doing what my doctor said, drink more water, salt increase, little exercise each day, etc. still I cant do much of anything. I am tired of having a dirty home and not bringing in an income.November 20, 2013 at 3:25 pm #4611Dr. DianaKeymasterThanks all, My muscle wasting on my right arm seemed to happen over about 2 weeks — it was DRAMATIC. There is a condition called Eosinophic-myalgia syndrome that is a possibility, but diagnosing it is a BEAR. I have a few Eosinophil doctors I can call to try to get referred for an evaluation. It’s tricky because they don’t find eosinophils, but more of a generalized fibrosis/inflammation if they do a biopsy correctly. My blood level of eos is fine, but frustratingly, that can be fine with this condition as the eos are in the tissue, not the blood. But Barb, did you see the video that Charlie1 put up about B12? There is a shot of muscle wasting that looks just like my arm! And did you see the shots of the spines?! They look just like ours! This is from a B12 issue, not from EDS, etc. Because I woke up with hand tingling that I haven’t had in years, I am reconsidering B12 malabsorption again. The only B12 I get now is through food and supplements. We all seem to have G.I. issues, right? If we are not absorbing B12 (among other things), I wonder if returning to B12 shots could help? I saw one posting by a doctor who said that he considers B12 deficiency if blood levels are low OR HIGH. I don’t understand that, though, and I didn’t see it in a journal… Quest Labs, here in the states offers a “Holo-TC” test that can help locate a B12 deficiency. This deficiency can be masked by folate, and most of us take lots of folate, I believe (I know I do!). So, quite the quandry, but I’m all for trying the ‘easy stuff’ first – checking out B12 before eosinophilic disorders. I *think* because of our G.I. issues, many of us have vitamin deficiencies that are difficult to test for. Getting them back in balance is not easy, it seems!
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