RecipeForDisaster

Oh, regarding the iron, I wanted to say that you still need to get the ferritin fixed, even if it doesn’t help symptoms or if you don’t feel symptoms from it being low, because it will definitely come back to bite you down the road if you leave it that low. I did get a little anemic from it, and that is definitely not good for someone with hypovolemia. I’m very glad I did the infusions and got my levels up. I always say, I don’t need another reason to do poorly! My other half has a low ferritin now, because he does double red cell donations as often as he can. Unfortunately, I think he will have to stop those. He’s been taking my good iron for a long time.

When they were working me up for MCAS (I don’t think I have it), they did a 24 hour urine tryptase and had me try to trigger symptoms as much as I could that day. Well, I’m pretty sick, so stuff like always being cold, pale, and exhausted were tough to pin on the iron. We tried oral supplements for a long time (more than a year?), without much improvement, before going IV. I’m not sure I’m much better, but I keep getting worse overall, so it’s hard to say. I always wonder if I would have gotten worse quicker if not for this or that. But I do not feel better, and there is so much going on, that the waters are very muddy.

My ferritin was also 6. It’s not always easy to absorb iron you eat, especially without acid, and you can’t absorb a ton of it at once. Seeing a hematologist is a great idea. I had to get IV iron infusions and now maintain (I hope) with iron polysaccharide with vitamin C added - ferrous sulfate can be hard to tolerate if you take it on an empty stomach, which works better…. I tolerated it but it didn’t help me enough. My absorption is not great across the board and we don’t know why. I’m low in almost everything, and I’m probably thinner than I should be. It’s not celiac. Plus, if she’s premenopausal, she’s losing -some- blood. Tryptase in blood/urine is usually tested for MCAS. Sometimes a 24 hour urine collection is done.

Just a couple of quick points… beta blockers can raise blood glucose. Obviously, they mask tachycardia, too. I’m hypovolemic and do OK on a little bit of midodrine. I can’t tolerate very much, but it does help me. I don’t think heart failure is too likely from this description, but obviously I don’t know. Has she had an echo? My HR was hitting 180 from just walking (I am very fit) before I got it under control with metoprolol. I could not tolerate more than the 75mg I’m on, though. My HR ends up getting too low, and I have escape beats. Did she have her arms raised when washing her hair? I really can’t tolerate that and it would spike my HR for sure.

My experience too. My IV nurses used to try their good automated arm cuff machine on me, until I invited them to compare it to manual readings. They are usually about 20 points off for me! The wrist cuff readings are even more random. It’s all manual arm cuff for me.

That’s amazing! I am inspired by your doctor doing that. I would have expected anyone to refuse. It’s hard enough to get saline or LR in many cases! Good luck - I hope it is really helpful. That sounds great about helping your dad. I would love to do that. It’s my speed these days!

This test was very helpful for me. I think he is great if you have something unusual.

I started with 30mg and went up to 120mg. I just had a weird "helium" or floating sensation in my chest when I took it. It has a short half life (unless you have the ER/CD version), so probably fine to try. Acebutolol has been good for palpitations in general, PVCs, and it hasn’t dropped my BP. I don’t see it used much, though.

I was also offered flecainide, but ended up using acebutolol during the day - it’s a beta blocker but with anti-arrhythmic properties. I take metoprolol at night, but that’s more for the pounding. I did try diltiazem, but it didn’t make me feel any better and it lowered my already low BP. The other meds I still take have not done that.

I get this when my BP is dropping, I change positions, or am about to pass out. It’ll go all the way to black if I don’t sit/lay back down.

I’m about 2 hours from Brigham. I get IVIG at home, though. It’s much better that way. It was a lot of work to set up and took months. Plus, it’s extremely expensive. It took me forever to get my IV fluids set up, but I am good now, and have lots of them on hand. I’m so grateful for that safety net.

Yes. I don’t see a lot about it other than what he writes. It’s too bad it isn’t known by most anyone… I definitely have an autoimmune component, so I am now getting IVIG, which I qualified for because of the autoimmune small fiber neuropathy. So far, I don't think 3 treatments has helped my dysautonomia, but Dr. Novak said it might take a year.

I would ask your insurance for recommendations - I use OptionCare, but I have Blue Cross and am not near you.

Yeah, I had to take prednisone for years for my asthma. It was not too great. It’s tough, because a lot of the stuff I am using is not that benign, and having such low BP all the time isn’t good for your organs. I suspect the doctors would agree, though - bone density, infection risk, eye problems are reasons to avoid steroids if you can. The methylprednisolone does a great job of keeping me up all night, even though I don’t get an increased BP from it.

My aldosterone was normal, as was my K(I eat a lot of vegetables). I tried 1/4 tablet and 1/2 tablet - no dice. Most importantly, I didn’t get a benefit after years, so it was not worth the migraines and edema. I don’t get it, though. Good to know about the Cortef. I think I’ll have trouble getting anyone to try it.

I remember reading that. I think it was low, but not 0. Sounds silly, specifically if I’m hyped up to go to the lab in the city and get stuck. Shouldn’t be too low. I always wondered about trying a steroid. I get 100mg methyprednisolone before my IVIG 2 days every 6 weeks, but I don’t get to see if it helps, because the IVIG messes me all up. I don’t think anyone wants to try steroids, though. I don’t get an appetite or a BP boost with the IVIG steroids - but who knows, lots going on there. I get IV fluids those days, too. I did poorly on fludrocortisone - somehow it didn’t help me, but I had lots of edema and migraines. I never understood it. I do better on licorice. I had 2 big endocrine work ups and 3 ACTH stims - OK. My renin is pretty high, but that makes sense with my low BP.

Yes, vasopressin was OK. I use the pills, partly so I can split doses if I need to. It’s a double edged sword for me. My sodium runs low, but my BP is really low. I need all the help I can get with that, and I can’t always do IV fluids.

I’ve had the head of my bed raised for years. It might have helped, but not enough… I don’t have nocturia, really, I just pee out whatever I drink all day. Even if it’s salty. I have trouble with low sodium anyway… but it’s worth it, because my BP is so low. We know it’s a risk, so I try to use it as little as I can.

It helps me somewhat. Maybe 1/3 as much as a liter of fluids. I get bad headaches and low sodium(despite 15gm of it daily) if I take it daily, so I try to keep it to every other day. Most of my doctors were scared of it, but I keep getting worse, so they get more desperate.

Ditto for me - metoprolol has not lowered my BP, although I was afraid of that at first. We did a ton of readings, hourly at the beginning, to make sure. Ivabradine is actually a funny channel blocker, which is why it acts differently from beta blockers.

I don’t have POTS but my BP is very low, and tough to bring up. I have about 5 other meds I use for this (from pyridostigmine to DDAVP) - and midodrine doses can get up pretty high, so you might be able to use more if your doctor approves. I use IV fluids when things are really bad, or when I need to do better for something.

I think it’s not selective enough - they don’t think that one would safe. Most of them are not for me.

Haha! It's tough, I can’t really try another due to my BP and asthma. Acebutolol works okay during the day, but I can’t sleep if I take it at dinner or later.

I only get about 6 hours out of mine! It’s wild.

I’m in a tough spot, because I have bad asthma and need to try not to lower my BP at all. I do okay on metoprolol, but it’s out of my system quickly (even with the "24 hour" version). I take acebutolol during the day instead. It makes it hard to sleep, or I’d take that twice a day.