Lainy Posted August 6, 2018 Report Share Posted August 6, 2018 What tests did you have done to determine if blood volume is an issue? Is testing for Aldosterone levels one of them? Which of your symptoms were eased by treating low blood volume? Quote Link to comment Share on other sites More sharing options...
Always hoping Posted August 9, 2018 Report Share Posted August 9, 2018 Several years ago I had the blood volume test completed. Thankfully I was only slightly below normal so I wasn't treated. It was a nuclear medicine test where you lie still for a long time. Basically they insert the isotop (I think that is what the "nuclear stuff" was called) and then take vials of blood out at scheduled intervals over time (may have been an hour). I seem to remember the name Daxor and that the testing machine isn't readily available at all hospitals. I have had an issue with aldosterone also. They determined my issue through blood work. Flourdicortisone helped my symptoms a lot, which was most likely since it is an aldosterone replacement drug. Increasing the sodium my kidneys retained helped build the blood volume and increase my BP, so I guess this would say that aldosterone and blood volume are connected in a manner. Hope this info helps. Be well! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted August 9, 2018 Report Share Posted August 9, 2018 I'm supposed to have testing done using 24 hours worth of urine electrolytes to estimate blood volume... my PCP is supposed to get it done so I don't have to actually do the test in Boston, but I haven't heard anything about getting it done-and in the meantime they started me on licorice and then florinef, so I don't want to bother if the test will be skewed. i am nearly positive my blood volume is low and most of my doctors don't think it's worth testing for, partly because there's not a specific treatment for it. I kind of AM being treated for it, florinef, IV saline.... Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted August 9, 2018 Report Share Posted August 9, 2018 I had the test in the UK, same principle as DAXOR but it was botched due to the long transport time of my blood to and from the lab across London to be labelled with isotope. The blood was clotted by the time they tried to re inject it and I had lost my IV access. I am positive I am hypovolaemic as I feel best at night after hydrating all day, and initially had a fantastic response to licorice root although this waned after about a year. Unfortunately I can't tolerate fludrocortisone. Saline helps minimally but access to this is very limited, and most of it is in my bladder anyway by the time the bag is done - may as well just pour the IV bag directly into the toilet. I would LOVE LOVE LOVE a blood transfusion! Wish someone could come up with the answer to this. I also tried desmopressin which helped me sleep through the night without peeing but didn't help me stand and lowered my sodium too much as I produce no renin or aldosterone. B x Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted August 9, 2018 Report Share Posted August 9, 2018 PS there is no reliable way to estimate someone's blood volume from a urine collection. There is some kind of CO2 rebreathing method for blood volume assessment that some labs use. I do not know the accuracy of this or if it is widely available. B x Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted August 9, 2018 Report Share Posted August 9, 2018 Interesting... it was a well known autonomic neurologist who ordered the 24 hour urine electrolyte measurement to estimate blood volume. I would think that would be extremely variable considering your electrolyte levels fluctuate! Quote Link to comment Share on other sites More sharing options...
Lainy Posted August 9, 2018 Author Report Share Posted August 9, 2018 Thank you all so much for your answers. I was tested for aldosterone and the lab showed <1 but my Dr didn't mention it as an issue. Maybe just something he overlooked since all my other blood lab results were normal? For those that take licorice, what does it do to help you? Is it safe for someone with hypertension? Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted August 9, 2018 Report Share Posted August 9, 2018 Do you get a heart murmur when fluids are low? I was admitted to the hospital Tuesday and the Dr said he heard a "squeaky murmur" today my nurse could hear it and ive been off my regular fluids so wondering if thats part of it. Quote Link to comment Share on other sites More sharing options...
Weary Posted August 9, 2018 Report Share Posted August 9, 2018 @laimy with that aldosterone level, woukdnt you be diagnosed with hypoaldosteronism? Have u looked up to see how many of your symptons that might explain. I had been looking a bit to see if i might have psuedohypoaldosteronism based on agenetic mutation i found, but i dont fit the profile did u say renin low too? Usually the two together can illuminate whats going on. My aldosterone on last blood test two weeks ago was 9 sitting up so unlikely to be cause of my high blood pressure. I didnt test renin this time since i didnt think the lab woukd get their act together to chill the tube Quote Link to comment Share on other sites More sharing options...
Always hoping Posted August 9, 2018 Report Share Posted August 9, 2018 @Weary I do remember my endo saying it was a combination of blood work results that to,d him I wasn't producing aldosterone. It probably included the renin. They didn't specifically diagnose me with hypoaldosteronism though. I have read that low aldosterone isn't that uncommon in people with POTS. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted August 10, 2018 Report Share Posted August 10, 2018 23 hours ago, RecipeForDisaster said: Interesting... it was a well known autonomic neurologist who ordered the 24 hour urine electrolyte measurement to estimate blood volume. I would think that would be extremely variable considering your electrolyte levels fluctuate! An estimation of blood volume based on urinary electrolytes/osmolarity would be based on an assumption of normal salt and fluid handling. Unfortunately this cannot be assumed to be the case in dysautonomia patients, many of whom have deficiencies in the necessary fluid retaining hormones such as renin, aldosterone and vasopressin. There is a good paper by S Raj on the Renin Aldosterone Paradox in POTS which highlights this. 21 hours ago, Lainy said: For those that take licorice, what does it do to help you? Is it safe for someone with hypertension? Licorice is usually recommended to be avoided by people with hypertension, BUT that is for the general population. People with dysautonomia can have high blood pressure as a response to hypovolaemia, which licorice helps with. For me, basically it helped me STAND, WALK and sit comfortably without lightheadedness/presyncope. The only way to know how it affects you would be to try it and monitor your BP (with the approval of your doctor). After 8 months chairbound I was standing with a huge grin all over my face just a few hours after taking 2 x 450mg capsules, so in my experience it did not take very long to see an effect. You would not have to be on it for weeks to know whether it was going to help or not, and it could easily be stopped if either it didn't help or your BP went too high. Maybe I could have kept it working for me for longer by saving it for special occasions rather than daily use, but of course if you have had a teeny taste of upright life back again, you want it every day, and after about a year or so my body got used to it and the effect waned. I do still take it though as I could be far worse off without it and do not want to find out. 21 hours ago, ANCY said: Do you get a heart murmur when fluids are low? Yes I had a heart murmur when I was admitted 4 days after the sudden onset of POTS. It led to me getting an echo which was normal, so I was glad about that as without a murmur my heart wouldn't have been properly assessed on the NHS. On subsequent occasions the murmur has not been there so I do think it varies with volume status. B x Quote Link to comment Share on other sites More sharing options...
angelloz Posted August 10, 2018 Report Share Posted August 10, 2018 I had the blood volume testing done twice at the Cleveland Clinic. Once it was minimally low the second time it was moderately low. Fluids and salt help me quite a bit. As was mentioned above the test is long and uses a radioactive isotope. I too was told 24 hour urine gives no information on blood volume.. I can not tolerate most medications so I rely on salt and fluids. I was told not to overdue plain water as it causes electrolyte imbalance which has happened to me and is really scary. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted August 11, 2018 Report Share Posted August 11, 2018 I trust you guys and my primary isn't actually arranging the urine collection test as the neurologist asked him to anyway, so I won't go through the bother of the test! My renin is high, and I've been on licorice and then florinef for a while as well as salt and fluids. I sure don't want an artificial normal result! I guess I won't get my blood volume measured. I'd be willing to go to Yale for Daxor, but most of my doctors say it isn't worth doing. I think they are pretty sure I have it and there's not much specific treatment anyway.... especially treatment that I'm not doing. Quote Link to comment Share on other sites More sharing options...
Mbritt724 Posted October 6, 2018 Report Share Posted October 6, 2018 On 8/9/2018 at 11:51 AM, bombsh3ll said: I had the test in the UK, same principle as DAXOR but it was botched due to the long transport time of my blood to and from the lab across London to be labelled with isotope. The blood was clotted by the time they tried to re inject it and I had lost my IV access. I am positive I am hypovolaemic as I feel best at night after hydrating all day, and initially had a fantastic response to licorice root although this waned after about a year. Unfortunately I can't tolerate fludrocortisone. Saline helps minimally but access to this is very limited, and most of it is in my bladder anyway by the time the bag is done - may as well just pour the IV bag directly into the toilet. I would LOVE LOVE LOVE a blood transfusion! Wish someone could come up with the answer to this. I also tried desmopressin which helped me sleep through the night without peeing but didn't help me stand and lowered my sodium too much as I produce no renin or aldosterone. B x Did the licorice root help increase aldosterone levels? Which then increased overall blood volume? Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted October 7, 2018 Report Share Posted October 7, 2018 19 hours ago, Mbritt724 said: Did the licorice root help increase aldosterone levels? Which then increased overall blood volume? No, it basically tricks your own cortisol into mimicking aldosterone in the kidney, resulting in increased salt and fluid retention. It does so by inhibiting an enzyme found in the kidney which normally inactivates cortisol so that it cannot bind to the mineralocorticoid receptors. It is definitely worth a try although for me the effectiveness wore off after some time. I have heard this is similar to other patients as well. Interestingly I have also heard the same about fludrocortisone, which I didn't tolerate anyway due to side effects. Maybe if I had just kept the licorice root for special occasions I could have kept it working for longer. The benefits were dramatic and noticeable within a few hours of taking. B x Quote Link to comment Share on other sites More sharing options...
Mbritt724 Posted October 7, 2018 Report Share Posted October 7, 2018 2 hours ago, bombsh3ll said: No, it basically tricks your own cortisol into mimicking aldosterone in the kidney, resulting in increased salt and fluid retention. It does so by inhibiting an enzyme found in the kidney which normally inactivates cortisol so that it cannot bind to the mineralocorticoid receptors. It is definitely worth a try although for me the effectiveness wore off after some time. I have heard this is similar to other patients as well. Interestingly I have also heard the same about fludrocortisone, which I didn't tolerate anyway due to side effects. Maybe if I had just kept the licorice root for special occasions I could have kept it working for longer. The benefits were dramatic and noticeable within a few hours of taking. B x Ah, interesting- that makes sense, the tricking cortisol idea. Thank you for your response! I was able to manage low BP swings with tons of hydration and increased salt/ vitassium pills, but am finding I need something more now. Do you know about how long it worked before you began tolerating it? Was it only a few weeks, or months? And did you take pill form or tea? Thank you 😊 Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted October 8, 2018 Report Share Posted October 8, 2018 On 10/7/2018 at 6:52 PM, Mbritt724 said: Do you know about how long it worked before you began tolerating it? Was it only a few weeks, or months? And did you take pill form or tea? I still take them even now, I am afraid of how much worse I might be without them. Also I produce no renin or aldosterone at all, and total mineralocorticoid deficiency is rapidly fatal in humans so I need some form of substitution and would have to take florinef instead which gave me horrible side effects. The brand I take is Swanson's Licorice Root 450mg capsules, 2 daily. They can be bought online from amazon, iherb and various other suppliers and do not cost a lot. It was about a year until the effects started to wane for me. Others have said between a few months and a few years for this to happen so we are all different. I tried a licorice tea once but the taste was absolutely vile. If you do choose a licorice product, make sure it is true licorice root and not the deglychyrrized (inactive) version which wouldn't have the mineralocorticoid effect. Ironically my blood pressure is not low - stage 1-2 of hypovolaemic shock is what I relate to - increased BP in an attempt to compensate for low blood volume, however licorice root is said to raise BP as well for those who need that. I would really recommend trying it, you might just have as good a year on it as I did - I could walk for a couple of miles on it and even stand a bit too!!! It allowed me to get married standing up for which I will be forever grateful. B x Quote Link to comment Share on other sites More sharing options...
Mbritt724 Posted October 8, 2018 Report Share Posted October 8, 2018 4 hours ago, bombsh3ll said: I still take them even now, I am afraid of how much worse I might be without them. Also I produce no renin or aldosterone at all, and total mineralocorticoid deficiency is rapidly fatal in humans so I need some form of substitution and would have to take florinef instead which gave me horrible side effects. The brand I take is Swanson's Licorice Root 450mg capsules, 2 daily. They can be bought online from amazon, iherb and various other suppliers and do not cost a lot. It was about a year until the effects started to wane for me. Others have said between a few months and a few years for this to happen so we are all different. I tried a licorice tea once but the taste was absolutely vile. If you do choose a licorice product, make sure it is true licorice root and not the deglychyrrized (inactive) version which wouldn't have the mineralocorticoid effect. Ironically my blood pressure is not low - stage 1-2 of hypovolaemic shock is what I relate to - increased BP in an attempt to compensate for low blood volume, however licorice root is said to raise BP as well for those who need that. I would really recommend trying it, you might just have as good a year on it as I did - I could walk for a couple of miles on it and even stand a bit too!!! It allowed me to get married standing up for which I will be forever grateful. B x Thank you so much for all of your answers! I am ordering the same brand on amazon now 🤗 Quote Link to comment Share on other sites More sharing options...
Lainy Posted October 10, 2018 Author Report Share Posted October 10, 2018 I had a pretty discouraging visit with my cardiologist this past week where I asked all these questions and he brushed me off. I couldn't even get to the question about licorice so I'm tempted to just try it anyway and see if it helps. 😕 Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted October 10, 2018 Report Share Posted October 10, 2018 5 hours ago, Lainy said: I had a pretty discouraging visit with my cardiologist this past week where I asked all these questions and he brushed me off. I couldn't even get to the question about licorice so I'm tempted to just try it anyway and see if it helps. 😕 Sorry you had a bad experience with the cardiologist, I would definitely not go back there - seek out someone who understands dysautonomia and is willing to listen and address your questions, particularly if you are paying for it. Licorice root can be bought without a prescription and it is really quick to take effect so you would soon know if it helped you or not and could just stop if not. I would recommend checking your BP on this just to make sure it is not going too high. Best wishes, B x Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 10, 2018 Report Share Posted October 10, 2018 Dear @Lainy - when you need to find a new cardiologist call ahead of time and ask for someone who is familiar with POTS. When I needed to find a local cardiologist I called the university hospital in my state and askes for a list of physicians that see dysautonomia patients. The list was small but I found a good one. Don't let them brush you off - just keep looking! Quote Link to comment Share on other sites More sharing options...
Lainy Posted October 10, 2018 Author Report Share Posted October 10, 2018 @Pistol & @bombsh3ll Thank you for the encouragement! That's something I might have to do if I can't see more improvement on my own. He's my second cardiologist and the doctor that diagnosed me so I was really hoping I could just stick with him. Oh well. My PCP recommended adding in magnesium when I feel that extreme fatigue. Has anyone else heard of magnesium helping? Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted October 10, 2018 Report Share Posted October 10, 2018 15 minutes ago, Lainy said: Has anyone else heard of magnesium helping? It certainly helps with constipation but not with anything else in my experience. B x Quote Link to comment Share on other sites More sharing options...
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