juliegee Posted January 9, 2010 Report Share Posted January 9, 2010 Hi All,I know we recently had someone post about our symptoms imitating living at a high altitude. A forum search revealed nothing to me . Mack (my 17y/o son) just had some blood work done and it revealed a variety of abnormalities. I tried to look them up on the internet and all pointed to either dehydration or resulting from living in a high altitude. Problem is, we don't . Here's the abnormal stuff:-Serum creatinine was borderline low, .076 (Normal range 0.76-1.27)-Hemoglobulin was high, 15.8 (Normal 11.7-15.0)-Hemocrit was high, 45.2 (Normal 34.8-43.5)-MCV was high, 97 (Normal 80-92)-MCH was high, 33.8 (Normal 27.3-31.7)-RDW was low, 12.1(12.3-14.5)Any thoughts, comments, or "Me too's" would be very much appreciated. I'm just a perennially worried Mom, trying to figure out what this means.(BTW, I learned from everyone here to get his test results. His internist called & said "Everything's normal." I asked him to send me the results. The paper was full of highlighted abnormal results- Grrrrrr.)Thanks-Julie Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 9, 2010 Report Share Posted January 9, 2010 (edited) Julie,I'm the one whose body is living at high altitude. If you PubMed search you'll find many lab results from altitude studies in Brazil, Ethiopia and Nepal. High Hematocrit, Hemoglobin and RBC are responses to chronic hypoxia in the brain. They are also indicative of hypovolemia or dehydration. Mack could have either. His creatinine and BUN would be high if he were dehydrated. The other tests for altitude sickness are GFR (kidney function) and lung diffusion capacity. High serum creatinine and high BUN would indicate low GFR, his kidneys seem to be working fine if he has low creatinine. Mine is high and my lung diffusion is 230% of predicted (all those extra RBCs are transferring O2 really well!) Has he dropped weight recently? Is he drinking enough? His blood volume may be "perturbed" like mine is. My neph said that NO blood-work will be correct for me. If you have questions, call his doc! Don't take: "all normal" for a response!JenniferPS- If he is on epogen, those numbers would be correct. Anything that raises RBCs would show like that on labsPPS- It could also indicate that he is developing sleep apnea. The chronic nightly hypoxia would elevate his RBC. Has he complained of being really tired or started snoring? Edited January 9, 2010 by firewatcher Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 9, 2010 Author Report Share Posted January 9, 2010 Thanks for your help, Jennifer! No, he wasn't dehydrated. He drank 3-4 bottles of water on the way to the doc- knowing they would take blood. It still took 4 sticks and he drank throughout. We don't have GFR numbers. The lab statement indicated that they didn't have reference norms for children under 18, but that is certainly something to explore.Wow, your creatinine is high- go figure. No wonder you are such a mystery . How do you test lung diffusion capacity? No asking his local doc, he's the one who said all was normal. Grrrr. I have sent the results to Dr. Rowe at Hopkins for his interpretation given Mack's symptoms. Thank you for your help!Julie Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 9, 2010 Report Share Posted January 9, 2010 Good idea to send it to Dr. Rowe. Yeah, that whole creatinine fiasco...by my blood-work, I should be a 6'4 male eunuch professional rugby player. Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 9, 2010 Author Report Share Posted January 9, 2010 Good idea to send it to Dr. Rowe. Yeah, that whole creatinine fiasco...by my blood-work, I should be a 6'4 male eunuch professional rugby player. I bet that turns your husband on Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 9, 2010 Report Share Posted January 9, 2010 No, he likes me fully estrified! He has been a happy man since I went on HRT! Quote Link to comment Share on other sites More sharing options...
yogini Posted January 9, 2010 Report Share Posted January 9, 2010 Has Mack been tested for low blood volume? It's interesting that his results came out that way because many of us have low BV or symptoms that mimic it. And symptoms similar to altitude sickness too. My friend got bad altitude sickness in Colorado and said it reminded her of me and my POTS! In either case not enough oxygen getting to the brain, but how to fix it?My blood work is always "normal". It's interesting that something showed up here. I hope that looking into this brings you some answers and more/better treatment. Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 9, 2010 Author Report Share Posted January 9, 2010 I thought I'd post this for those of you with similar blood test results. I just heard from Dr. Rowe (He's fabulous- a Saturday afternoon!!!!) and he thinks Mack's blood work is "par for the course-exactly what you'd expect with someone who has OI and CFS." He thinks it's highly correlative to hypovolemia. He did want us to check Mack's B-12 levels as RBC can be enlarged if that's low, but it's highly unlikely with Mack's high RBC results. He also said that Mack's kidneys are working wonderfully well- low creatinine. So, good news I guess ...I'd still love to hear from anyone with similar results. Thanks-Julie Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 9, 2010 Author Report Share Posted January 9, 2010 Has Mack been tested for low blood volume? It's interesting that his results came out that way because many of us have low BV or symptoms that mimic it. And symptoms similar to altitude sickness too. My friend got bad altitude sickness in Colorado and said it reminded her of me and my POTS! In either case not enough oxygen getting to the brain, but how to fix it?My blood work is always "normal". It's interesting that something showed up here. I hope that looking into this brings you some answers and more/better treatment.Thanks Yogini. I was surprised about the blood work too. It's always been "normalish" till now. Seems to show a progression- worsening of symptoms . It makes me want to hug him, but I can't find him.... Typical teen- he's with his girlfriend . I hope your bood work stays stable. Better yet, I hope your symptoms go away too!Julie Quote Link to comment Share on other sites More sharing options...
Elfie Posted January 9, 2010 Report Share Posted January 9, 2010 I don't know about what the tests, but I was just thinking about altitude and hydration and the correlations with POTS. This is funny to me because I grew up at a high altitude (9,200 ft) and then spent the next 10 years of my life at about 6,800 ft. I never drank water (or anything for that matter) and was probably chronically dehydrated. However, I was very healthy and felt great. It was only after moving to a lower altitude (about 3,000 ft) and starting to drink a lot of water did I develop POTS symptoms (like within two months of these changes). Probably nonsense, but kinda weird. Now of course, I have bad POTs symptoms when I return home or go to high altitudes. However, no one else in my family has any problems returning to the higher altitudes, up to about 12, 000 ft. Just me. Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted January 10, 2010 Report Share Posted January 10, 2010 I live at high altitude also (mountains of Utah) and I know that I have hydration issues because the the higher the altitude, the worse I feel, the worse I feel, the more nauseated I am and the less ability I have to consume liquids without feeling they are too heavy on the stomach. I recommend softer fluids: sports drinks, tea, herbals teas. As always, salt consumption is very important even if it is not sunny outside. Thermotabs are excellent. Kits Quote Link to comment Share on other sites More sharing options...
vemee Posted January 10, 2010 Report Share Posted January 10, 2010 Macks blood tests mirror mine. I have normal blood volume but it is on the lower side of the normal scale. B12 is normal. I haven't heard of an explanation for this except for the one about it may be the bodies reaction to hypoxia but I can't remember where I read it. Quote Link to comment Share on other sites More sharing options...
yogini Posted January 10, 2010 Report Share Posted January 10, 2010 If it's hypoxia, I wonder why they don't give us oxygen as a treatment? OK, most of us probably don't have to be hooked up to it - maybe occasionally or something? I know in ski areas they have oxygen rooms - and that's what helped my friend with her altitude sickness. Maybe there are side effects or it's too expensive?I always wondered this about saline too. I had it once, after my first TTT and felt instantaneously better...and then when I got super sick again I asked for it and it seemed impossible to get without going to the ER. It seemed like more of a red tape issue than anything else... Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 10, 2010 Report Share Posted January 10, 2010 Probably because it is nocturnal only due to bradycardia. CPAP might fix it, but if our respiration is as slow as our HR, then it isn't addressing the real problem. Other methods work to increase blood volume and they are easier to dose and regulate than O2. Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 10, 2010 Author Report Share Posted January 10, 2010 Macks blood tests mirror mine. I have normal blood volume but it is on the lower side of the normal scale. B12 is normal. I haven't heard of an explanation for this except for the one about it may be the bodies reaction to hypoxia but I can't remember where I read it.Hi Vemee,Interesting that you have similar blood work. Forgive my intrusiveness, but how functional are you? PM me if you'd prefer. Mack's physician estimates that he functions at about 60% of normal. He can attend school, but little else. He sleeps most of the time he's home. He loves to play guitar, but it takes a lot out of him.Thanks for sharing-Julie Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 10, 2010 Author Report Share Posted January 10, 2010 Thank you everyone for helping me. I appreciate all of your responses. I think Mack's blood work is the result of both hypovolemia and hypoxia. He has severe bradycardia at night, and although I've never considered it before, a CPAP machine makes good sense for him. May have to look into that if he'll consider it I saw Regis (of Regis & Kelly) hooked up and it looks scary. Thanks again. I learned a lot from everyone.Julie Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 10, 2010 Report Share Posted January 10, 2010 Julie, he may have to have a sleep study before they will approve CPAP. He may need O2 at night instead of positive airway pressure. Have it checked out, especially if he sleeps that much. I have a friend with apnea and he is remarkably improved from using his CPAP. Good luck and keep us posted. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 12, 2010 Report Share Posted January 12, 2010 If it's hypoxia, I wonder why they don't give us oxygen as a treatment? OK, most of us probably don't have to be hooked up to it - maybe occasionally or something? I know in ski areas they have oxygen rooms - and that's what helped my friend with her altitude sickness. Maybe there are side effects or it's too expensive?I always wondered this about saline too. I had it once, after my first TTT and felt instantaneously better...and then when I got super sick again I asked for it and it seemed impossible to get without going to the ER. It seemed like more of a red tape issue than anything else...Everyone with POTS has hypoxia. There are also a number of mechanisms that the normal cardiovascular system utilises to deal with being at altitude. Some are similar to those implicated in some forms of POTS. Quote Link to comment Share on other sites More sharing options...
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