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SarahA33

Quick Updates And New Info From The Cleveland Clinic!

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I'm confused.. and the nurse who called to explain my results seems to dislike questions, lol. The results were about my blood volume test .. she said i was -15% depleted.

How is that even possible? -15??

Anyway -- any who had this done shed some light on my #? If you could share your results I'd really appreciate it.

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I have never had the test, and I know little about volume. I am no help. I will be counting the days until the 18th for you.

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Hi Sarah,

I had the blood volume/hemodynamics last week. I was told my volume is low but they didn't give me specific results and it's not on MyChart. I can update if I find out.

Also, I see Dr. Browning for the first time on Tuesday and I always get nervous for Drs appts. Would you mind giving me a general idea of what that appt is like? Is it different than the cardio appts?

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I had my blood volume done at the Cleveland Clinic on two separate occasions. The first time it said mildly depleted. The second time moderately depleted. Just told sodium, hydrate the usual. let us know if you get some better tips!! I can't tolerate many meds to help with this issue due to severe migraines.

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Hi Sarah! My blood volume was down almost 15 % (14.8 something?) as well. Dr. Jaeger didn't say anything to me other than two things. 1) lots o salt and fluids and 2) he said he didn't want to prescribe some of the volume builders because of my age (48). I don't know why my age makes that big of a difference. I was planning on asking him that next time I see him just out of curiosity.

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Don't worry young one! It's because I am too oldddddd apparently. Why not due to my age? I don't know. He mentioned something about it was because they were in the steroid class? He may be comsidering other factors as well that i am unaware of. He is very smart and his brain is full of info at all times! Pardon my ignorance.

I am having alot more trouble with my breathing, though, when upright and hypo perfusion symptoms, etc. so I was going to tell him next time that I don't feel like my blood volume is up to par currently for sure. Of course, that is just a self diagnosis.

He also told me last time, though, that Mayo is now recommending 10 grams of salt per day and I don't believe I am achieving that. My blood pooling when they did the test was 40% just upon sitting up and my blood cell mass is too small (whatever that means).

I know he and Dr. Browning and everyone else is totally on your case and they are going to fix you up! Maybe I am just an old jalopy with worn parts that can't be replaced.. There is always duct tape for me!

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You aren't an old Jalopy!

I should feel like a million bucks this morning but that's not the case. I mean I really feel like I give my sodium/fluid intake almost an olympic try and i just can't even manage a number that's not negative. I dont get it.

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Yes, I suppose we all understand the duct tape! Lol.

I am wondering some of the same stuff as you are I think. Why can't we "fix" the hypovolemia? What is going on that won't allow it to get back up there and/ or stay there? Now, my blood glucose seems to be having a heyday it seems so I am trying to track that myself to bring to the docs. Sorry to hear you were back at the ER. Did your alarm go off on your monitor from Jaeger or is it a different kind? I had to call in when mine went off. I know it was supposed to beep when hr was over 150.

I think it was smart to keep Jaegers monitor on. Nothing wrong with two! Lol. You must have had sticky pads all over you!

If you are in a hyperadrenergic state, I would think that it would take the body awhile to feel better even if you were fluid infused. I was thinking of going there the other day when I was breathing as if I have copd. I was wondering if we should use the ER like a gas station where we pull up and get hooked up to an iv. That would be kinda cool actually. Maybe there could be a pots drive up.

I always have to keep a sense of humor.......Hang in there. I really do think you will have a good outcome with all these upcoming stuff and you will be feeling sooooo much better. I wouldn't say that if I didn't feel that way. I think it will be a tough time but well worth the effort for you. Prayers. S

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I'm glad that they are ruling out a pheochromocytoma. I thought of that when I saw your NE/Epi values (but no baseline levels?). A long time ago, when I was experiencing mysterious probs, they measured my 24hr urine to rule this out (mine were abnormally low). Ironically my problem was the exact opposite-adrenal insufficiency. You will find that most normal doctors gave very little understanding if adrenal problems. (But at least my family doc had been trying to think outside the box!)

I too have had abnormally low blood cell levels for the past three years. Consistently neutropenia, and usually low RBC and platelets, as well. I did my tesearch and then insisted that they test my reticulocytes (why don't docs do this automatically in these situations?)-if your RBC are being destroyed but your body is making them, retic ct is elevated (trying to replace them); if retic ct AND RBC are both low...well, the factory is broken. Both my RBC and reticulocytes were below range. I ended up having a bone marrow biopsy...which they screwed up-too superficial or something (the whole experience was dysfunctional-even half conscious, I could tell the staff didn't like the doc; but I still had to pay the $$bill for no answers despite trying to protest). So, while I did not get answers (I'll be on my deathbed before I go through that again)-looking at a decade if blood work results, I can see that my count levels took a nosedive after a doctor had me reduce my steroids (was 15mg cortef daily for years). I recently switched to prednisone snd am taking more, twice a day. I hypothesize that my blood counts are better but I haven't had another blood draw yet.

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Fried,

I've already had a pheo ruled out years ago. I had a PET Scan, CTs, MRIs, an Octreotide & MIBG Scan

I dont know what to make of the high platelet counts.. it's kind of ridiculous. If I don't test positive when I go back to the CC on 18th for any myoproliferative diseases then she said it's probably caused by an intense immflamation somewhere. Sorry to hear you had to go through the bone marrow biopsy.. it sounds terribly uncomfortable. If it's anything worse than a spinal tap I'll be in tears.

How come you are currently on steroids? because of your blood work? Im nervous to try another steroid, like prednisone, because my heart rate increases. Did you have any cardiovascular problems from them? Good luck on your upcoming labs -- I hope you find some of the answers your looking for :rolleyes: - Sarah

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Sarah,

Sending you warm wishes and hugs. I wanted you to know that I had a BMB after blood tests showed high tryptase. The biopsy was negative and really I did not find it to be that bad at all. I was lucky that they got enough and went smoothly. I have never had a spinal tap. Hang in there and don't forget any of your questions. I always get back home and wish I had asked more.

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Regarding steroids--when I started cortef in 2203, I was taking 10mg am/5mg pm (rarely "updosing" with an extra 5mg when sick), for adrenal insufficiency. Maybe because it was a replacement dose, I never had problems taking the pills (except sometimes at night-nobody had warned me that taking it at bedtime was a no no). When a new doc wanted me off the cortef, thinking I didn't need it, CC doc disagreed. As a compromise, I went down to only morning dose-problems ensued (with secondary adrenal insufficiency, I was usually ok except when stressed; but I experienced other problems that docs thought may have been due to autoimmune). After an ER visit (adrenal crisis), doc said I need more cortef so told me to take an extra five every afternoon. Not quite ready to do that, I took 2.5mg (so less than what I took for 8ys). When I was under stress or hiking (physical stress), I felt GREAT (instead of trembly); if I took it while eating lunch...holy cow, tachycardia! It was awful! Surprised me. Anyway, new Endo then said-hey how about prednisone, longer and slower acting? Since thus is also used for autoimmune probs, I thought killing two birds, one stone. A bit of a bumpy transition, the two meds are a little different, but increasing to 2x/day (I think 2mg am/1mg dinner) is working great. No tachycardia, no sudden onset.

Fwiw

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Angelloz, Hey! Thank you for the words of encouragement! I really do appreciate all of them. thank you for teling me about your BMB, I hope that you are doing well

Fried,

Do you have Addison's? that's really interesting about the timing of your steroids.. I wonder if I ran into so many problems when I took them in the morning because thats when I'm most symptomatic. hm... I had prednisone when I got the beginning of Stevens Johnsons Syndrome because of the seizure Medicine, Zonegron. I'm allergic to Sulfa Med's and apparently the pharmacy and my former seizure doctor forgot about.. The medication takes 3 weeks to build up in your system, so I was almost a month into an awful allergric reaction.

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Just checking some old posts about low dopamine txs and wondered how the CC visit turned out for you Sarah. I just saw Dr Shields (neurologist) there and he ordered a thermal sweat test (in a sweat cabinet). Did you do that one? Saw dr jaeger there three years ago and have been struggling. He released me because my cardio tests were all good. Anyway, just wanted to tell you about a dopamine supplement called Dopatone. I was low-normal in dopamine and no one suggested I supplement, but I read about on Potsgrrl's blog and it has been very helpful in a short amount of time.

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Just checking some old posts about low dopamine txs and wondered how the CC visit turned out for you Sarah. I just saw Dr Shields (neurologist) there and he ordered a thermal sweat test (in a sweat cabinet). Did you do that one? Saw dr jaeger there three years ago and have been struggling. He released me because my cardio tests were all good. Anyway, just wanted to tell you about a dopamine supplement called Dopatone. I was low-normal in dopamine and no one suggested I supplement, but I read about on Potsgrrl's blog and it has been very helpful in a short amount of time.

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Hi Orthohypo,

Glad to hear that the supplement is working well for you. Are you still seeing Dr. Shields? I couldn't do the "sweat test" because it's contraindicated in people who have a severe sulfa allergy. There's a component in the power that they brush on you that could cause a reaction. Thank you very much for letting me know about that supplement, my dopamine has normalized now but i'll keep it mind in the future.

I'm really sorry to hear that you've been struggling... there are a lot of other doc's who specialize in the cardio end there, maybe you could talk to Dr. Shields to see if he could recommend someone at your next appointment. Or, DINET has a physician list http://www.dinet.org/index.php/physician-list where you can search for a specialist in Dysautonomia that might be closest to you.

I'm still following up at CC. I do hope that this supplement works really well for you, and also, thank you for taking a moment to see how I am! Please keep us updated as to how you are doing!

Best Wishes,

Sarah

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