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RecipeForDisaster

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  1. Many of us lack intrinsic factor which is but needed by the stomach to process oral B12 or B12 in food. My great grandfather died of pernicious anemia but I don't have it per se. Other meds and supplements can also make it hard to absorb in the stomach. That's why sublingual is a much better bet. I'm told by several doctors it's as good as injectable, if you use it correctly.

  2. I was very scared to take metoprolol myself. I started with 12.5mg very carefully.

     

    I use it for awful pounding palpitations and fast heart rate. It absolutely helps. Without it I sleep very little if at all.

     

    Both of my cardiologists say that metoprolol is a "lousy anti hypertensive " at lower doses. I can take up to 50mg daily if I need it, but I almost never do. My BP can run in the 70-80s and I still take it because there's very little effect. I do think lowering my fast heart rate does help my BP come up. My resting rate is back to the 60s-70s where it used to be. Even sitting here with a rate in the 90s or higher felt uncomfortable to me.

  3. That's the one I take, I need steady metoprolol in my system for as long as possible. I take it at bed time. I don't find that it works for the whole 24 hours but I can split it and take it every 12 hours per my cardiologists. I usually don't, because I need it at night more than any other time. Pharmacists tell me this particular form is okay to split along the score line, but not anywhere else nor can it be crushed.

  4. Interesting... I've been toying with a second opinion from an endocrinologist but I might also ask my hematologist to run that test.

     

    I'm certain my ANA wouldn't just start being positive every time for no reason at all. As you said, if it's not a big deal, why test? I know some people "just have a positive ANA" but when you used to be consistently negative....

  5. My ANA is 1:160 positive (I think speckled, or was if homozygous? Whichever one indicates lupus) and was never positive until this year... ESR/CRP are okay, rheumatoid factor normal, DNA test for lupus and mito normal, and so I'm told by my PCP and hematologist that it's not a big deal and I don't need follow up. I do have a lot of soreness, low temp, recurrent infections... I may push to see a rheumatologist but I doubt it'll get me anywhere. 

  6. Both of my cardiologists assured me that metoprolol, at least in small doses, isn't potent in lowering BP. Mine is very low to begin with and I haven't noticed a difference when I take it vs. when I don't. I use the 24 hour extended release version which doesn't last a full 24 hours for me. The different BBs have very different functions.. I am limited to specific ones so I don't have issues with my lungs.

  7. I can only handle half of a beer now. I'm a huge craft beer person so it's very disappointing. I used to be able to try 3-4 and now I have to split just one with my husband, which means we have to agree on which one to drink. First world problem, but still.

     

    i have horrible effects from more alcohol than that, even though I was well acclimated before. Getting hot and sweaty, nausea, very fast pounding heart, general illness waking me from sleep... nothing ever helped with it. ANY wine even homemade sulfite free stuff causes this, too. It's so unpleasant that it's not worthwhile to drink wine or a whole beer. I can drink the non-alcoholic stuff, but it's awful.

     

    I had a 30 day Holter and it showed lots of PVCs and PACs including bigeminy (every other beat), and fast sinus rhythms... that's about it.

     

    Pre- and during cycle is a really bad time for me too. Pretty much everything gets worse. I think taking B6 that week has helped somewhat, but not enough. 

  8. My neurologist in Boston just told me >15gm salt. I was surprised. I adore and crave salt, I'll even lap up plain old sea salt, but even I think that's a lot. I balance it with fluids, and I love to drink broth too,

     

    A liter of normal saline has 9gm in it! I guess I got enough the other day when I got 1500mL.

  9. I'm sure I have MTHFR too. My levels are about 2000 and my hematologist is not concerned about it even though I haven't been tested for that mutation (he says it's so common it's not worth looking for-I don't know, but he didn't want to bother testing). I had exactly that scenario and take the methyl version of B12 and folate,

  10. Thankfully, I have ONE doctor (out of about 10) who is willing to write my script for IV fluids at home. I've gotten the exact same "advice", lying on the floor hypotensive and being told to drink more. Believe me, if that helped, I'd be fine. It's like I'm asking for narcotics for goodness sakes. Most of my doctors say drinking does the same as IV fluids. They should try it when THEY are in shock. I was going to get an infusion the other night and started really crashing soon after starting it. We ran the first half liter as fast as it would go, then another liter, and it turned me right around. The next day, I felt better than I had in a long time. Otherwise I would have had days of not doing well.

     

    I don't know why there is a huge huge difference, for me, in receiving 1-1.5 liters of saline and drinking as much as 10 liters of electrolyte balanced solution, but it's very clear. I urinate most of what I drink but I don't when it's IV. I can't explain it, but it's dramatic and vital to me, as nothing helps as much. It isn't enjoyable or inexpensive... I wouldn't choose it if I didn't have to!

  11. Mine is high from supplementing... the test doesn't differentiate between a cyanocobalamin tablet you took and your real B12 levels. Of course it could be a lot of things, but if you take B12 or lots of enriched food, it could just be that.

     

    The ranges are a little wonky too... are you over 2000?

  12. Unfortunately, I have found that doctors get very defensive or arrogant when they are wrong or can't figure something out. It seems to make them very insecure. I have had several experiences like this.

     

    I'm in a similar boat. I seem to have dysautonomia but not POTS and it has yet to be nailed down.

  13. I take 25mg extended release metoprolol at night. It helps, no doubt, with the pounding and tachycardia. If I take another 12.5mg, which helps more, my heart rate goes to about 50 and I get a lot more PVCs when that happens for some reason. It's strange but enough to keep me from doing that even if my cardiologists tell me to take extra if I need it. I just hate the feeling.

  14. I wonder if you see Dr. Novak because I am also treated in Boston and he told me he had another patient just like me (a woman from Hawaii) who he never did figure out. I appreciate his honesty but it was not inspiring! I also have a non-specific diagnosis and am not sure about it, but I am fairly certain it isn't POTS. I'm in my 30s too but have been sick for a long, long time. I passed out in my early teens "for no reason" and honestly thought it was normal.

     

    I have horrible sleep problems as well. I have had a lot of nights just like that, waking every hour, giving up at 2 or 3 am because getting back to sleep is just too hard to yield only another hour of sleep. Metoprolol has helped a bit because my pounding heart is the most difficult symptom to sleep through. You might look into sleep apnea testing-I have that and CPAP has helped somewhat.

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