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toomanyproblems

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  1. No. Or not while I was having that issue at least.
  2. Could be. I try to keep up with the supplements, but sometimes I get confused.
  3. Yes. Like a Charlie horse that doesn't go away quickly. Very painful.
  4. It should be the MCH that's increased along with the MCV not the MCHC. A MCHC over 36% is usually a technical error. But no, the increased red cell size by itself should not increase the viscosity of the blood in any meaningful way. I'll look into it some. But I've never seen an association with high MCV and problems like total blood volume or viscosity. Do you have any other abnormal findings that might go with the high MCV? There may be a correlation in another associated abnormality.
  5. Thanks for this clarification. That's what I thought but just wanted to make sure. That is odd that you retain corticosteroid production but not aldosterone. Why do you not tolerate fludrocortisone? Do you take hydrocortisone instead because of its mineralocorticoid properties? I usually take florinef at a dose of 0.05mg per day but have been experimenting with 0.1 mg to see the effect on my RAAS system. It's very difficult for me since I have to do this balancing act on my own. It's also complicated by my gastroparesis, which is extreme at times, impairing my absorption of prednisone. In those cases I have to inject solu-cortef two or three times daily, which has much more mineralocorticoid activity than prednisone. So if I take florinef at all, I have to decrease the dose. Most of the time If I'm taking oral hydrocortisone, or injecting it, I don't need florinef, or I don't think I do. If I'm having to inject solu-cortef, I'm not sure the florinef is even being absorbed but some meds do seem to be absorbed better than others. I have to work this all out on my own depending on how I'm doing. It's a very dynamic situation with me. Frankly, Addison's is rare enough that they don't advise you much on salt intake, or even the dose of florinef. It's not like diabetes where everything is fine tuned because so many people have it and it's studied so much. When you go in with Addison's, it's sort of like, well, you're still alive, that should be good enough for you. Not exactly fine tuned. And this is my experience over more than 30 years with it and several different endocrinologists, even really good ones. The thought of adding the POTS in the mix for advice is laughable to me. Normally, if I'm getting enough mineralocorticoid replacement in some form, I don't worry about salt loading. If my heart starts beating too irregularly, I'll eat a banana and drink some Gatorade and that usually takes care of it. But I can become very unstable with all of my problems and I'm pretty much on my own to try to figure it out because it involves too many different specialties to combine all the boxes I fit into. I'm lucky to be a biochemist with more ability to research and understand the mechanisms than most, but it's still quite challenging. I'm very interested in your results from trying to manage your electrolytes with your problems. I don't know where you live but in the US we have a service called request-a- test where anyone can go in a pay for a test and have it drawn and processed just like any lab test requested by a dr. You can have results sent to your dr or not. A basic electrolyte panel, protein and liver enzymes is only $29 so I sometimes just do that rather than getting a dr.'s appointment and all. It's just easier and more timely. Turnaround is less than 24 hours. With my lab background, I usually know what I need to order and what the results mean.
  6. Megaloblastic anemia is typically defined as B12 and/or folate deficiency. Low platelets (thrombocytopenia) may also be present. The reason the red cells are large is because there's a defect in DNA synthesis in rapidly dividing cells such as red cells that causes cell growth without division, resulting in abnormally large red cells. There are other abnormalities associated such as hyper-segmented neutrophils (that may actually be the first sign of a megaloblastic anemia) and red cell abnormalities such as Howell Jolly bodies (clusters of DNA in the red cells, caused by the cell cycle asynchrony, that are too numerous for the spleen to remove) and abnormal red cell shapes. Both of these are noted in a stained blood smear when viewed under the microscope. There is also normally an increase of the enzyme LDH relased from cell destruction of the fragile abnormal red cell precursor (abnormal immature red cell) in the bone marrow. In megaloblastic anemia, there are decreased red cells, but the Mean Corpuscular Hemoglobin (MCH) is increased because the red cells are so large (increased Mean Cell Volume- MCV) the amount of hemoglobin in each of these large cells is increased. The Mean Corpuscular Hemoglobin Concentration (MCHC) which is expressed as a percentage, in not normally affected. This type of anemia is usually slow to develop and the findings, when limited to this type of anemia alone, are distinct from iron deficiency anemia. In the common iron deficiency anemia, findings are also low red cell counts but low MCV and MCH due to small red cells, and also often low MCHC because there is less hemoglobin in each of red cells percentage-wise. Other things that can cause megaloblastic anemia are chemotherapy types of treatment such as methotrexate used for autoimmune conditions such as rheumatoid arthritis. These agents act to disrupt DNA synthesis and cause asynchrony of cell growth in the bone marrow in a similar way as B12 and folate deficiency does. I can't see how either of these types of anemias, while definitely problems in their own right due to low red cells, etc., could have anything thing do with low total blood volume, in response to the question asked by the Pistol. Physiologically, the mechanisms are different. Even though the cell counts are low, plasma would normally replace the decrease in total blood volume. I could be wrong, but that's the normal mechanism. In POTS, there can be low blood volume caused by a different mechanism along with the anemia though. In this case, it would be harder to determine the low red cells since the hematocrit would be pseudo normal due to decreased plasma volume. As for the secondary erythroid hyperplasia noted in your bone marrow -- this is an increase in immature red cells being produced in the bone marrow secondary to the anemia process, an expected finding. What autoimmune disease do you have? Increased IgG levels indicate an over-active immune system. Many if not most tests now have normal ranges established for men and women when the values are different by sex, and often even by age when that matters. In fact, many normal ranges are specific and may be slightly different to each lab depending on the type of equipment or technique used to measure the values. It's true not all tests have these updated or more specific normals, but I would think this is more rare as time goes by and the normal values are contested by other corroborating tests to show the inaccuracies of them.
  7. Are you saying most of the free water retained passes into cells with very little remaining in the intravascular space? Or sodium? I'm thinking the former since potassium is the major intracellular cation but just trying to clarify. Since I also have primary Addison's, I have to carefully balance my own mineralocorticoid intake with electrolyte balance, etc. I've gained some additional insight from your posts and I'm trying some different things. Thanks.
  8. I have a procedure tomorrow morning and can't answer thoughtfully right now. I'll try to get back with you tomorrow.
  9. Ya'll are going all over the place. I'll say this on lab values -- for most tests, lab normal range is calculated as the values from 95% of the population. This means you have a chance of having a slightly abnormal value in one out of every 20 different lab tests you have and still be normal. IDK if this will help people to not be so upset over slightly abnormal values but there it is. So the more different lab tests you have, the greater your chances of a slightly abnormal value for one of more of them. That's not to say you should ignore them, but most tests that indicate a disease process have more than one type of test, be it labs, x-rays, etc., to help put the picture together. So more corroborating tests *may* be needed. An interesting variation from this way of determining normals from 95% of the population is back in the day when I started working in the lab, the normal range for cholesterol was 150-300mg/dL. This was even before they could break it down into the various fractions like LDL and HDL. Around the mid 1970s it was determined that the normal values were too high for actual normal. And that a large percent of the population on the higher end actually had values that be a factor in causing heart disease. So normal cholesterol values were changed to 125-200mg/dL. Many values that fall outside the normal range, such as the low RDW mentioned here, are not significant. RDW stands for red cell distribution width. If it's high, it means the reds cells are of widely varying sizes and could indicate an anemia the body is trying to compensate for by releasing younger (and larger due to their maturation stage) red cells from the bone marrow in order to get enough red cells to carry oxygen. This is generally considered a good sign in anemia but is notable as abnormal. If the RDW is low, it just means the red cells sizes are closer together than in most people. It's generally considered not to signify anything significant in a non anemic person. On the other end, when the HDL test first came out and we were calculating the normal values for our test, normals were drawn from the lab personnel as well as other places. My HDL value was higher than 95% of the others, so it was thrown out. But a high HDL is good. So it can go both ways.
  10. An MCV of 101 is above normal (normal 80-100). How long have you had this high an MCV? Is your hemoglobin normal? I've researched the heck out of POTS and would be particularly attuned to any possible hematology connection. I can't see how the high MCV and hyperPOTS could be related.
  11. Well, I don't know how high an MCV is what you're calling high but no, I don't think it has anything to do with POTS. It doesn't have anything to do with whole blood volume. Typically, a high MCV indicates megaloblastic anemia caused by b12 or folate deficiency, which shouldn't be consistent finding over years without having to be treated. Hematology is my specialty area fwiw.
  12. What is your MCV? MCHC should not be affected.
  13. Well, for one thing, the reference for the last sentence that's scaring you is concerning diabetic autonomic neuropathy (Vinik, Aaron I.; Maser, Raelene E.; Mitchell, Braxton D.; Freeman, Roy (2003-05-01). "Diabetic Autonomic Neuropathy". Diabetes Care. 26 (5): 1553–1579. doi:10.2337/diacare.26.5.1553. ISSN 0149-5992. PMID 12716821). Is that what you have?
  14. There is a test for low blood volume but it involves radioactivity so it's not used much. At least last I knew. They may have something newer but I haven't heard of it.
  15. I don't know how much control your doctor is giving you over how you wean down off the Florinef but I've weaned down off high doses of steroid plenty over the years. One thing you might try is to take a dose that makes you feel ok and then a lower dose that has been more difficult the next day, then back to the better dose the following day and so on, trying to slowly work your way down that way. That kind of every other day schedule gives your adrenal glands a chance to jump start some on the lower dose days and then you can recover some the following day. The amount of corticosteroid in Florinef is pretty low. It's mostly mineralocorticoid. But it can cause some problems getting off of after a long time.
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