toomanyproblems

No. Or not while I was having that issue at least.

Could be. I try to keep up with the supplements, but sometimes I get confused.

Yes. Like a Charlie horse that doesn't go away quickly. Very painful.

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.

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.

I have a procedure tomorrow morning and can't answer thoughtfully right now. I'll try to get back with you tomorrow.

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.

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.

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.

What is your MCV? MCHC should not be affected.

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.

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.

I've been following this thread because I'm kind of crashing right and this symptom has come back with a vengeance. When this happens to me I can be gasping for breath for a long time. I try to breath deeply but it's often like I've been running or some other type of over-exertion. One thing I'm not sure has been mentioned is when you breath like this like say in panic attacks, it's hyperventilation and you can't do it very long or you'll pass out. That's why they try to put a bag over your face. When I do it, it's like I really need the oxygen. Do others feel like this? I've checked my SpO2 during these episodes and it's usually normal although it can be low at other times when I don't feel like this.

My presentation with gastroparesis was rather severe and probably not typical so you shouldn't take my experience as the norm. These things do tend to wax and wane though. Since POTS involves autonomic nervous dysfunction it can include your gut so sometimes there are gut problems. You can do a search on this forum to get an idea.

Gastroparesis is common in dysautonomia. I have it. I've only been able to do liquids for over three years. It can wax and wane in some people though just like other dysautonomia symptoms.

Thank you all so much for your comments. I will look into all of them. It's such an investment of time, energy and money and I want to make a good choice,

I know this topic has come up a bunch in the past, once even by me I think, but the docs come and go. I think I'd like to revisit going to one of these places if it's going to be worthwhile. Specifically, I'd like to have my dysautonomia looked at as a whole, including the POTS, gastroparesis, lack of temperature control and general autonomic nervous system failure, maybe even the Elher's-Danlos aspect. I have individual diagnoses. I'd like someone to look at the entire picture and offer any advice or treatment plan. I would hopefully like to not spend time and money being re-diagnosed or undiagnosed for things I already know I have. It seems like most of these places are heavy on the diagnosis and and light on the treatment part other than the run of the mill suggestions and drugs. What are people's recent experiences? I hope there are some new ones to share.

I'm so sorry you're going through all of this. I hope you can get some resolution and that it doesn't turn out as bad as you think. I'm thinking about you.

Well, I have CRP and and thought I remembered this device and his name. So I went back and did some search research on my CRPS forums and other forums such as the MS boards. As a scientist and long time CRPS sufferer, sorry but no. Don't fall for it. I would love it to be true as much as you. I sure hope I caught you in time. And I hope you see this before it gets deleted.

How are you today?

YES! I've had this for years off and on but I've had it every day night and day since July of 2018. It's been steadily worse to the point of cycling every 20 minutes some days. The normal is every hour or so. It's more often burning hot with extreme sweating (even right under a cool pack). But often there's what is described in the texts as "overshoot" which then causes freezing cold. I have an electric blanket and two of those big cool gel packs for icing your back by me at all times. I dress very light and add bed layers or easily removable outer clothes. I too loose sleep and feel exhausted over this. I'm up all night trying to cycle through the hot and cold solutions for my cycles. But to some extent, it's becoming a routine, like getting up a lot to go to the bathroom. I've read on this and as far as I can tell it's a sign/symptom(?) of dysautonomia -- the inability to regulate body temperature. While I feel pretty desperate about it at times, I don' t think it's taken very seriously in the medical field, although I can't recall having brought it in as a primary complaint and having it blown off. I'm not sure anything can be done specifically about it. But it does help to know others have it. And it does help to have a decent remedy. So tell your friend, yeah, I feel his pain. Good luck to him, and if he hears anything, I'd love to know what they say.

Yes. It can stimulate the parasympathetic system and help stem the sympathetic surge you're feeling. That's why yoga, etc., helps. Also help with increased oxygenation of blood.

Are you taking Vit C?

I was in the hospital for gastroparesis problems at the time. But also I need to be hospitalized because I have Addison's and the risks of fluid imbalance during the prep is serious. I hope you can be hospitalized.It's easy to pass out with pots and the procedure.

I have gastroparesis and I'm due for a colonoscopy next month. I'm sure I'm going to need to be hospitalized. I was last time and it was still rough. Is that a consideration?