Birdlady

The problem with endos and their "once over" is that they really have no idea what they are doing when it comes to endocrine disorders. Endos are really only good at diabetes. From all the stories I have read online and have heard first hand, they miss textbook cases of real endocrine problems ALL the time. You literally have to be on your deathbed for them to take you seriously. A lot of them have been trained to think if you are up and walking, that you can't have an endocrine disorder. Also remember that "normal" test results don't mean optimal. A B12 level below 300 needs further investigated without a doubt. Urine MMA is a better test for B12 levels. TSH is a poor indicator of thyroid function as it means nothing if you have a problem with your hypothalamus or pituitary. You need to get the actual thyroid levels checked-- FT3, FT4, T3 and T4. Get copies of your lab work and start doing your own investigative work. That's the only way I've come as far as I have.

I am trying to make a picture showing what I see but I'm having a very hard time capturing it. I'm not very good with paint programs. If it turns out half-way decent I'll post it. Thanks to both of you for posting here. I wonder if the busted blood vessel could be from all the up's and down's in BP/HR we suffer from on a daily basis? I can't imagine this is good for our eyes. I haven't had any lasting spots today so that is good news. Edit: Here's my pathetic attempt to show what I see. I don't see all of these spots at once, but it's just example of the different shapes I've seen before. I have both positive and negative after image effects, so that's why I threw in a dark spot too. The more I blink, the more pronounced the spots become. They don't twinkle or flutter or anythign like that. They are just very very bright. I can't even fully capture how bright they are.

I just made a post about something similar to this. I get something like a camera flash stuck in my vision. It can any shape, size and last 2-3 days at times or just a few hours. Comes out of no where and is not related to anything I feel or was doing at the time. Often times I wake up with the spot. I have no ideas what causes it and neither does 4 ophthalmologists. They just told me it is probably "ocular migraines", but I told them I don't even get headaches unless I don't eat for long periods of time or am underreplaced on my hydrocortisone. If you figure anything out, let us know.

Yeah I've seen that post before. If it's normal then...why even mention it or even have a medical term for it?

Sophia, I had the most basic things tested. My optometrist did the visual eye exam and that was good. The other doctors made me turn my eye ball in all directions as they were looking at my retinas. The one thing they said I have is something called white without pressure. The first 3 doctors said that my retinas were very thin in that area, so that was probably why I saw the first episode of lights in my left eye. Apparently the WWP looked very weird to him and wanted a senior doctor to look at it. Then this was the guy basically dismissed everything the other doctors said and told me I was just too young to have these problems. He said that WWP means nothing and that it's normal. Right... I guess I got strung along or something by the other docs. This is the BEST ophthalmologist group in the area, so if I went any where else, it would be a 'downgrade' of sorts. Those other weird tests you mentioned, I did not have done. It's pretty rough being young when you are sick these days. No one takes you seriously at all and basically just blow you off. I was always the youngest person in their office by about 20-40 years... How does one know if they are having a silent migraine? haha Maybe this sounds like a dumb question but I really don't understand it at all. I'd be afraid that these spots are being blamed on "silent migraines" when its' actually something else that hasn't been found yet.

I really don't think it's headaches or migraines for me. That's why I threw that in there at the end. I get a headache maybe once a month if that and when I get one, it is usually because I'm underreplaced on the hydrocortisone and a quick stress dose brings me out of it. It's amazing how many symptoms one can get with low cortisol I wish I could draw a picture of what I get because I've seen pictures/read descriptions of what a migraine aura looks like and that is not what I'm getting at all. My spots do not move with my vision or go from the middle of the vision out to the edge. These spots are burned into my vision. There really is no other way to explain it. If it's in the upper right hand corner it will stay there until it fades on its own. The short line I had stuck in my vision this morning is gone now. Usually goes away in a few hours, but I have had a few that stayed 2-3 days before. It's most noticeable when I am looking at something lighter in color like a window with a blind on it or the computer screen. In areas with lower amounts of light, I can't really see the 'bright spots', which always confused me. If it is a bright spot when can't I see it in the dark? haha Every once in a while, I just get a spot in my vision for a split second too. If I'm looking at a white wall it will be the negative image or if I'm looking at a dark wall it will be the positive image. It's so hard to explain all of this and I am terrible with paint programs to even attempt to draw this. When I said the doctor discriminated me by age, I mean because I am young. Normally you won't have a vitreous detachment until you reach 60+. I'm 26 (25 at that time) the doctor just said there was no way I had that and the other doctors must have been mistaken. He took a quick look at my eye and went..yep it's still attached. That was it. I have dark floaters in my eyes and can see a lot of weird stuff in my vision that I don't think is normal. At night my vision almost seems snowy. I'm not sure how else to explain that either. The doc ordered an MRI of my brain and orbits because brain cancer runs in my family, but everything was good. They did no other tests on me because of my age. He said they really weren't worth the time or hassle since he could see nothing physically wrong with the eyes. /shrug I have to wonder if the beta blocker helped because it's lowering my norepinephrine levels? I have mildly elevated levels upon standing. My sister used to suffer from severe headaches and migraines her whole life. Then it got to the point where no amount of pain meds would stop them. A few weeks later she found out it was a brain tumor...,so trust me I take headaches quite seriously. I just don't suffer from them at all and am happy/grateful I can say that.

I've been thoroughly examined by 4 ophthalmologists. Three of them said I had a vitreous detachment and the last one who was the senior doctor in that office discriminated me by my age and said there was no way I had one. Took a quick look at my eyes and said, "Nope the vitreous is good. There is some tugging but it is still attached fine". I have no idea who to believe at this point, but don't really want to go back to that office. I got strung along for 8 months thinking that I was going to have a retinal detachment at any moment. The other doctors made it sound like it was inevitable... I get these really weird lights in my eye. They are very difficult to explain, so I will give it a shot. You know that effect you get if you look at a camera flash? I get those effects stuck in my vision out of no where. I do not have to look at a light or image for them to appear. It can be horizontal or vertical lines, dots, blobs or just a random shape. They are more noticeable if I blink repeatedly. I found some other people with this same problem here. It can happen in either eyes. One day it can be my left (like today) tomorrow it can be my right eye. I now believe it is related to whatever problem is causing my POTS. When I was on a beta blocker for 2-3 months, they slowly went away and then disappeared completely. Then I came off the beta blocker to get more testing done and now after being off of it for more than a month, they are back. Every day I wake up and think, I wonder what new spot I'll see today. Sometimes I can see them in my dream before I wake up. I don't know if anyone else has any eye symptoms here or not, so I wanted to reach out and see! PS: This will be the first question I'm asked, so I'll just nip it in the bud now. I do not suffer from headaches or migraines.

Get the actual numbers to your stim test when they come back. Most endos really don't know how to interpret the results.

Hey Chaos! 68 as a baseline is way too low in my opinion. Anytime I am in the low 70's I feel like crud. Unfortunately though it just appears your body is having a hard time regulating blood sugar levels in general. You might want to get a fasting insulin done first thing in the morning and see what that is. Even with the hypoglycemia and reactive hypoglycemia these results are inching you very close into the "pre-diabetes" category. Most natural websites say you should never hit 140 any time during the test. Then you have mainstream sites saying you should be under 140 2 hours after a meal. Personally I think it's best to be under 140 for the entire test, but that's just my opinion of course! Some really hardcore doctors say you shouldn't be above 120! haha

I'm concerned that this cardio thinks 30-45 minutes of intensive cardio is going to help you. It might in fact make you much worse. I hope he understands that it is a possibility. I also agree with TXPOTS that it sounds like he's not dealt with many if any other POTS patients. I fear he's not going to be of much help to you if this exercise idea doesn't pan out like he's hoping. If you do try to exercise that much every day, make sure you are replenishing your fluids/electrolytes, stay cool while you exercise and definitely stick with recumbent exercises for a long time. I wouldn't start with 30 minutes right away. Just do 10 minutes and see how you feel. Then work your way up. Good luck and keep us posted on your progress!

Sue you are right this is very socially isolating. I guess I have a little bit of the anxiety, but for me with all my food allergies and exclusions, I become a "problem" friend. I can't eat any where, can't walk long distances, can't be out in the heat, can't be upright for hours on end etc. It's no wonder people don't call me up looking to go out for the day... Ok I'll stop whining now !! HAHA

I know exactly how you feel. Sometimes I feel like I'm completely out of my mind . My emotions are all over the place because I'm having this inner turmoil about even having this stupid "illness". My husband now knows that summer time is very very bad for me. It helps to have someone understand that the heat makes things 1000 times worse than in the cooler months. I've told my husband that I just need time alone and I'll lay in bed just staring at the wall, swearing at myself..LOL I guess it does seem pretty childish (now that I think about it), but it's better than walking around miserable, picking fights. That's what I tend to do on bad days. I hate when I do it too.

Iodine was very bad for me since it triggered an autoimmune attack within my body. I know that my reaction was not very normal, but the possibility is there. There's lot of conflicting information out there. One group of doctors say everyone should be cautious taking any iodine. Then you have an entirely other group of doctors who say this isn't true. Who's right? I have no idea but I from my experience, I don't take it any more. When I took iodine I had 6 amalgams in my mouth. Somehow the iodine triggered some sort of chelation, which then triggered an autoimmune response. I had large patches of hair fall out of my head. I was nearly bald on the left side of my head for a year, which was later diagnosed as alopecia areata. My dermatologist told me that it would probably never grow back since it had been so long. My hair follicles were probably all dead and if it did grow back it would probably be white or very light colored. I got my amalgam fillings out, started chelating and my hair all grew back! Why did iodine do this to me? I have no idea. All I know is that iodine triggered something in my body, so I no longer take it nor recommend anyone to take it unless they get tested and have a true iodine deficiency. This all happened under a care of my doctor. When my hair started falling out he said "that it wasn't possible". Well yeah it was possible as it happened to me. Stupid doctors... Before the hair fell out, iodine made me feel very nervous, anxious, jittery. I felt like I had drank about 15 espressos. I was told this was a good thing as it's "detoxing you". Right...I wish I hadn't been so **** naive. That's my opinion on it. I'm pretty much against large doses of iodine! lol

To throw a curve ball into all of this. NutrEval checks for nitrogen imbalance, yeast, fungal and bacterial dysbiosis. All of those amino acids and markers were normal as they look for LOW markers, not high. My husband could not believe that not a single thing was flagged there! Here's a pic...Hopefully this is okay to post. Zeros are good and 10's are bad. I've never had stool testing done, but you are right those are the best. I just had a positive IgG for gluten, wheat, eggs, yeast and a bunch of other things so I avoid them all. My diet is not very exciting as we eat the same foods over and over again. I'm not very creative when it comes to cooking. We never eat out anywhere so the possibility of cross contamination or an accidental glutening is very very low. My husband is actually the one with the severe gluten sensitivity verified by Enterolabs, so I gave it all up for him. I figured it was easier if we both went GF since it's hard to stop cross-contamination if some people are eating gluten. My diet is mainly chicken, beef, rice, potatoes, salad, vegetables, butter, orange juice, water, coffee (in the AM) and that's about it. It's really boring. We buy some brown rice pasta and I use butter with pepper as my topping since I can't eat tomatoes. They make my face itchy! That PDF was very interesting. Thank you very much for that link. I'll be bookmarking it so I don't lose it! I've always thought I needed thiamin. I've seen some people say they have cured their POTS with a thiamin cream, so this is quite interesting!! I appreciate all the google searches you've done. You've found some great info/links.

I have Addison's. We don't really buy GF foods. Rather than replace wheat, we've just gotten rid of it from our diets. We do eat some brown rice pasta, but that's really it. As a treat I'll buy a GF brownie mix or cake mix on the rare occasion. I haven't had any HFCS in at least a few years and we don't eat any MSG. I didn't include all of the results in my first post. It's really long and complex so I left a few things out. Other non-essentials that were high: Cysteine 149 (21-78) Glutamic Acid 56 (5-21) Proline 18 (2-18) very top of range Other random things the test showed: beta-aminoisobutyric acid 354 (22-192) I don't eat enough fats in my diet, which isn't a real shocker to me. But I eat too much olive oil! lol RBC's of magnesium, copper, manganese, potassium and zinc were good. RBC of selenium was low. Blood mercury was just within normal limits. I had all of my amalgams removed over 2 years ago and apparently it's still in me. I do not have a lot of energy with the high Taurine. Nothing online talks about high Taurine. Every single website is like "take taurine for all of these amazing effects!". Well I'm not getting any amazing effects from it. I can't really say that my diet is that high in protein either. I eat a piece of chicken a day or some beef, but nothing out of the usual. My mood has been just terrible recently. I can't stand being around myself.

Yes I have to take HC. If I don't I will die. No nicer way to put it. I've tried lowering my dose multiple times because of steroid guilt and I go into crisis within 2-3 days. It's not pretty at all. For 4 years I tried going the "natural" route and just ended up getting sicker and sicker. My cholesterol is really good. The last time I had it checked everything was well within range. Total 190 My HDL was 90 (>46) , triglycerides 44 (<150) and LDL 91 <130). I started taking DHEA because my levels were a pitiful 24. It's been one of the best things I've taken for my health. That one link you found, I had seen. That site is one of the reasons why I think I need to further investigate with a mito doctor. Gotta love this line from that site "Mild inborn errors of energy metabolism which may be compatible with survival at least into young adulthood, but not with normal development of mental and neurological functions have been associated with the excretion of elevated aKG." Since my AKG was more than double the top of the range, I think that needs further investigated. It sounds like everyone on the ME/CFS forum assumed they were all low in amino acids? I searched for the term NutrEval and got nothing, so I just moved on. I'm the type of person that likes to see real facts, numbers on a lab sheet rather than empirical data. Not that personal experience isn't important, but it's impossible to know how your metabolic/mitochondrial processes are functioning. Since I'm pretty high in some of the essential, non-essential and BCAA's, I don't feel supplementing would be in my best interest.

I've done a lot of google searches and haven't found much, so if you got something let me know! I tried searching that forum you mentioned and I found no results. It looks like (from what I've seen online) that Genova used to include a commentary sheet that told you what the results meant, but that's no longer included. Their own sample report said there would be something included and I got nothing... The doctor who ordered it for me, just wants to get $125 out of me to come in and "talk about the results" meanwhile he's told me that he has no idea how to interpret them! lol He's a nice doctor and very helpful, but this is so far beyond anything he's dealt with and I don't have the extra money to talk to him about it. He also has a 3-4 month wait. Since I'm on HC, I know my pregnenolone is non-existent right now. My concern about replacing it, it is that my 17 OH progesterone was mildly elevated prior to treatment. That could mean I have a mild case of LOCAH or that I'm a carrier for it. If I start to replace that pathway again, it could get backed up and that worries me. I have heard it's very good for most people though. The problem is that it can be converted to anything within the hormone pathway. Pregenolnone is the mother of all hormones after Cholesterol. Just be careful and watch out for any negative symptoms after starting it. http://jcem.endojournals.org/content/vol91...0646260001.jpeg

I'm not seeing a specialist and no one I see currently knows how to interpret them. I had one of my doctors run a NutrEval test as I was looking at my nutrient status and then all of these weird things showed up. I was fasting, the urine was collected first thing in the morning. There was nothing particular about the day and I was off all supplements for 5 days as recommended by the company. It also said to avoid artificial sweeteners and MSG which I don't eat normally any how. I contacted a mitochondrial doctor and she told me that if you are high on anything in the Krebs cycle then further investigation needs done, so I guess that's where I'm at right now with this. She told me if I wanted to do something on my own I could get lactate, pyruvate and CPK checked in serum. However she explained me to that a negative on those doesn't mean you don't have an issue! lol She just said that those are elevated in the more "common" mitochondrial disorders, so it's a good place to start. Upon further research, it seems like my body doesn't make adenosylcobalamin which is the form of B12 that lowers MMA. I think this needs investigated further too. There's no reason for my urine MMA to be that high after 3 months of daily B12 injections. I haven't found any literature that has seen MMA continue to be elevated for that long after starting daily injections of B12. I really appreciate you responding!! Thank you so much! The doctor I talked to said any results out of range are red flags that need investigated more. It's really unfortunate that the testing is expensive, invasive (in some cases) and even with negative results, it doesn't mean there's not a problem! Ugh...I think you are right though they like to run those tests while under different circumstances (after exercise or carb loading) to see how your body is responding. I might have a consult with this doctor I spoke to. She seemed really knowledgeable and amazingly she was very easy to talk to too. I find docs that specialize in weird disorders are often times not very good at communicating.

The only thing I know that can cause non-alcoholic fatty liver is high fructose corn syrup. Here's a study that talks about it. HFCS is literally in everything if you aren't trying to avoid it. http://www.ncbi.nlm.nih.gov/pubmed/18395287 It's also be been linked to liver scarring as well. http://www.sciencedaily.com/releases/2010/...00322204628.htm

I'm hoping someone has some insight with these tests. Perhaps those of you with a mitochondrial disorder can help or give me some direction. I had these tested because I wanted to rule out/rule in a possible mitochondrial disorder as cause of POTS. My POTS was a quick onset which coincided within a few months of getting Epstein Barr Virus. I've never been the same since and that was 10 years ago now. a-ketoglutaric acid (AKG) 36.5 (0.5-16) HIGH Vanilmandelic Acid 1.2 (1.2-5.9) very bottom of range Formiminoglutamic Acid 19.5 (<12.1) HIGH Methylmalonic Acid 25.9 (<19) HIGH Sarcosine 58 (<48) HIGH Lactic Acid 29.6 (6.3-36.4) Close to top of range Isoleucine 77 (24.-58) HIGH Leucine 100 (30-87) HIGH Phenylalanine 68 (26-71) Close to top of range Taurine 957 (68-538) HIGH Tryptophan 112 (28-111) HIGH Some of the results suggest a B12, B6 or B9 deficiency, which is rather scary considering I take those daily and give myself injections of B12.

After reading the study it's not as bad as I first thought. I posted in the other thread... I think a lot of us are starting off with exercises that are not going to be helpful. I'll be the first to admit that on days where I exericse, I usually over do it! Then a day later, I feel like crud and I don't' want to exercise. The key is to do exercises that do not require you to be upright and then slowly go from there. My husband bought me a recumbent bike years ago because I always wanted to exercise but he was afraid of me being on an upright bike. Now I just need to get my butt back on it and start to work my way up. I am starting very very slow and only doing 5-10 minutes 2-3 times a week.

During the study they performed MRI's of the hearts to get dimensions. I have no idea if an echo would show the same things. Mine have always been "normal" too.

The past few days have been pretty bad and I am still on the antibiotics and probiotics. I eat the same foods and never eat out so I highly doubt that a food was causing any problems. I wasn't having stomach problems. Just my usual crazy heart rates upon standing. The difference for me is that I have no visible signs of infection. I never get sick, I never run a fever and generally feel pretty good (except for the high heart rates), so that's why this was really odd for me. Even though I don't feel as good now, I still think there's something to this!

Add me into the low ADH and aldosterone group as well... My renin was normal though so go figure that one out!

After reading the full study, it's not as bad as it sounds in the abstract. The POTS patients that were studied did not have dysautonomia. They were tested by the cold pressor test, valsalva maneuver and something else I can't remember at the moment. The POTS and control groups had similar results. If you have failed those tests, then you don't fall into the group explained in the study. There were a few severe POTS patients in the study. The highest standing HR was 165BPM and the highest increase supine to upright was 60 BPM. The few patients that dropped out, dropped out due to other circumstances outside of the study (which was explained in the full text). In the study it says that patients started out using a recumbent bike, rowing machine or swimming 2-4 times a week for 30-45 minutes and then slowly ramped up the exercises over time. Only at the end were they encouraged to jog, ride an upright bike or walk on a treadmill. During the entire study they were to increase their fluid intake, salt and to raise the head of their beds. I think we've all been told to do this though. I think that this study shows us that doctors need to start testing us rather than throw pills at us. The fact that NONE of the patients failed the autonomic tests seems pretty significant. I always assumed that if you failed a tilt test then you had autonomic dysfunction. This study shows that is not the case at all. Dr. Levine could have done without using the term Grinch syndrome. It sounds like he's making fun of us and I don't like that at all.