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vemee

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Everything posted by vemee

  1. During my two day fast my glucose did fine. The 38 reading is what caused me to go to the hospital in the first place it happened on normal circumstances and all that week I had readings below 60 every now and then. but since it did not act up later that week the doctor just passed it off as one of those things. The hard part of reactive hypoglycemia is catching it; if you just take one reading when you feel symptoms and take the reading it may show that you are in the normal range. You have to keep taking it every few minutes to see if it is jumping up and down which uses up a lot of test strips. I have had several readings in the 30s but the doctor thinks it can be controlled by limiting carbs. The latest reading of 34 was after eating a low carb meal and 3 gluten free chocolate chip cookies, I was confused and thought gluten free meant glucose friendly so it was a goof on my part. The thing is that as a firefighter I dealt with people with diabetic hypoglycemia and I know that it really isn't something to play with. I don't know if you can go into a hypoglycemic coma with reactive but the effects on the brain are the same as for diabetic hypoglycemia. Some pass out, some act drunk, some pass out but their body continues to act awake without their controlling their actions or even recognizing their spouse. Some act obscene and I met one who mimmicks my symptoms of just getting mean, I wanted to see how low his level was but he attacked us before I could so we went straight to treatment. Most of the time reactives bounce back on their own but from my experience there have been 4 times in my life when it lasted for hours and light snacks did not help, it took a full meal and could reoccur later that day. These 4 incidents I would definitely say that I put too much insulin into my system even though I did not have a glucometer to take my levels. Also there have been times I have had sugar in my urine; my father had the same thing. Years ago when I thought I had diabetes I bought test tape that would tell if if there was sugar, every time I was in a foul mood I was passing sugar.
  2. I have been looking for an article that I read a while back that tried to link reactive hypoglycemia to increased sympathetic tone. I can not find it but I believe it was stating that increase sympathetic tone can cause hypoglycemia which would put pots patients at risk. However, the main purpose of the article was to discount reactive hypoglycemia as a psychological problem and that real reactive hypoglycemia does not exist. Fortunately this is not the predominate opinion. I may have the facts of this article wrong but I have seen articles saying that some think reactive hypoglycemia does not exist. There are also those who say that those who have reactive hypo never have their glucose levels go below the norm. I personally know that is not the case. I have had glucose tolerance tests in the past and have had varied results. I also did a two day fast 6 years ago when I had levels of 38 at work ( I was a firefighter and felt weird so I used the glucometers at the station which showed me low). Dr.s were not concerned of course and changed their minds about giving me a 3 day fast test but I went ahead and did it on my own. Basically whenever I brought it up with a doctor it was ignored after a fasting morning glucose test was given. If I can prove that I still have problems with low blood sugar while on precose and low carbs with no fruit I think I can get the doctor to give me the tests you suggested. It is hard to get some doctors to seek the cause of something instead of just treating the symptoms, I think my endocrinologist is not like that.
  3. I have only recently confirmed reactive hypoglycemia when I finally got to see an endo. She gave me a glucose monitor and I went to town taking my levels whenever I had symptoms. I would go through about 8 strips in about 30 minutes and I found that my levels would jump and fall 20-60 points in just a short amount of time like 2 minutes. The most comforting thing I found was that when I was really acting like a jerk was when my sugar was below 40; the last incident when I was screaming about nothing found my sugar at 34. I say it is comforting because it was suggested that my behavior was due to psych problems. Fruit and carbs are the main culprits for me and I have had to eliminate fruit altogether. I also was given precose which slows digestion. Sugar binges can really send me off into a dark mood as can chocolate. I can eat something and it will give me hypoglycemia and then I can eat the exact same meal at another time and it will not effect me. I would say based on the feeling I have when my sugar drops below 40 that this has been occurring over 30 years. I am not diabetic. 20 some years ago a doctor told me that my body over reacts to increases or decreases in my sugar levels but I only went to him twice and had to leave because of health insurance problems. He did not think that my levels actually dropped below 60 so I was surprised when I found they did.
  4. If you do not feel you need psychiatry don't go. As mentioned earlier once a doctor sees that you are seeing a psychiatrist they will say all your problems are psych. Anxiety and depression do cause fatigue but so does a long list of other conditions. Can you imagine a cancer patient being told that their fatigue is because they have mental problems. I went to a psychiatrist in 1994 because of fatigue, brain fog and other pots symptoms; I had not been diagnosed and was told by doctors that there was nothing physically wrong with me. Prozac was being hyped on tv as the cure all for all of my symptoms (I did not know my standing heart rate was high at the time) so I went to a psychiatrist. Worst mistake ever; I had a reaction to either the of antidepressants or another med I was taking and then I did have anxiety and depression for real. Other things that ruined my life have also occurred due to my mental health adventure but I don't want to turn this into a vent. Over the years, there have been many people on this board who were told they had mental problems causing their symptoms: it is an easy out for the medical doctor. If a doctor does not believe you, especially when you have the evidence that your problems are physical then you should leave that doctor and find another. As far as getting your medical records changed, I don't know how you can do it except to have enough evidence that your problems are physical. I don't know how electronic medical records will affect our efforts to keep misdiagnoses out of the hands of doctors we don't want to see them. Even though my experience with mental health has been a bad one, I do not want to discourage anyone who needs help from going to a mental health professional. There are always those in any system who have had bad experiences no matter how good the providers are. Also having a chronic condition like we have is in itself depressing and we need support; if the only way to get support is to see a counselor then do so. I did see a psychologist about adjusting to a chronic disability and found it quite helpful. She understood what I was going through since she had fibromyalgia.
  5. I have a slight concern that the high norpinephrine levels are causing damage. There is a rare type of condition called takosubo cardiomyopathy that they think can be caused by high levels of norepinephrine but I haven't read what levels are considered high enough to cause this. Like I said it is rare and I am more concerned about being struck by lightning on a sunny day; its possible but unlikely. Real concerns center around low perfusion to the organs such as brain and kidneys. I wonder if there is some kind of slow motion damage going on from blood pooling and not circulating. Now I am even more concerned about blood clot due to pooling. I have a genetic condition not related to pots called factor 5 Leiden deficiency and excess factor 8 which causes me to clot real easy. It was discovered after I had a pulmonary embolism. Pooling and factor 5 do not go together. I am on blood thinners which should help as long as my warfarin levels are consistent. However, this is a fairly new found condition and I had assurances that it is nothing to worry about. My daughters also have this condition and are not on blood thinners because they have not had a clot yet which is the protocol. My dad also had this, he was tested a few years before he died and was not put on blood thinners because he had not had a blood clot. His sister's doctor told her she did not need to worry about it so she was not tested even though she has children and grandchildren. So I was comfortable with the assurances that the ones not on blood thinners would be ok if they just moved their legs around on long trips and don't take birth control and talk to the doctor if they get pregnant. My dad died this spring from complications caused by a hyper coagulative state which was caused by factor 5. He did not have the big clot but microclots that caused both adrenal glands to fail. His dad had a history of thrombosis throughout his adult life and had a sudden death. Hopefully the warfarin will prevent this in me but I do worry about my daughters.
  6. Another problem is that medicine is business and not charity. Doctors usually are working for a group and are under a great deal of pressure to see as many patient's as possible in one day. Some places even cut the doctor's salary if they do not meet their quota for "production". This means that a doctor would rather spend time with three easy fixes than with one patient who takes up 30 minutes of their time. Specialists who get paid more per patient can be more flexible with the time they spend with patients. With reimbursements from medicare being reduced ( the insurance companies will probably follow medicare )the pressure to see more patient's will increase or the doctor will expect the patients to pay his full fee and have the patients try to get reimbursed from the insurance companies. Some doctors do pick and choose their patients and will try to discourage the undesirables from coming in to see them. Motives are not always pure. This is stuff I have learned from personal experience and from knowing people who work in doctor offices. Yet there are doctors who care and we should value them.
  7. No, I do not trust the medical community; they have to earn it. I have been harmed and almost died from their egotistical misdiagnostic shenanigans and I would prefer not to see any of them and just let nature take its course. This is an unfortunate attitude that has developed from seeing the true side of the medical profession and I do not like having this attitude because it lumps the good doctors, who do exist, in with the bad and makes me rely on my own medical knowledge and research which is inadequate. Doctors do work long hours and deserve the money they make but I question their deserving the godlike aura of genius that goes along with their title. I realize that if we did not have doctors we would not know anything about the condition we have and we would be worse off and I feel guilty for my opinion. Presently I am going to doctors that I am learning to trust, but it has taken time for me to start to feel like I am not wasting my time. I still have to deal with the post traumatic distress from one incident where I had a reaction to a drug and was misdiagnosed as bipolar by a doctor who had never seen me and never examined me before medicating me.
  8. I responded normally to the stimulation test too but my aldosterone levels were low and from my other post it is because of the beta blocker and midodrine. However, I was looking at my blood work from Vanderbilt ( I think I was part of the study) that was taken several years ago and although my supine aldosterone was low, it jumped up to be in the high end of the normal response when I was standing. My blood volume was normal but pooling was severe so my take is that even though my supine aldosterone was at the low end of the pots group in the supine position it reacted correctly to the volume loss due to pooling. In short this is very confusing and if I had an answer I could do an infomercial.
  9. That is what I got from the article. I wonder how people in this category respond to the acth stimulation test?
  10. issie, you are so right about doctors at big name places putting ego ahead of patients. I had a bad experience with the local ep guru who even though I had a heart rate increase of over 40 beats he claimed I did not have pots because my bp did not drop. He not only wouldn't listen but was even mocking me. He later told my work that there was nothing biologically wrong with me and tried to pass it off either as depression or trying to milk the system. Like you said all you can do is look for the good doctors and leave the bad ones as soon as you realize you've made a mistake going to that doctor. There are good ones out there but you have to sort through the lot to find them. For any one willing to make the trip to Northern Virginia, I recommend Dr. Abdallah he is listed on the physicians list and is quite caring and listens.
  11. Thank you for your response, my blood pressure is within the normal range usually (110-124 systolic and in the 70's diastolic) Sometimes when fatigued is really bad it is something like 70/35. I have been tested in the past for blood volume and they found it is in the normal range but towards the low side of the normal range. I also have severe pooling that cause a 44% drop in circulating blood volume. I just remembered I do take a 2.5 mg dose of kerlone which is a beta blocker which might reduce aldosterone.
  12. I went to an endo because I had tested for low aldosterone. The Endo was very nice and did the acth stress test which I passed but she said that it was probably midodrine that was lowering my aldosterone. I have never heard this before and can find nothing on the web to support this. I think she is wrong but I wanted to check to see if anyone else has heard this. I have scheduled an appointment with someone else for a second opinion since I think the low aldosterone is caused by the aldosterone/renin paradox that Vanderbilt discovered. I don't know much about it but both adosterone and renin are low in pots patients for an unknown reason maybe involving the kidneys.
  13. You sound like a good candidate for the program at The National Institutes of Health that examines people with rare diseases or who have conditions that are hard to diagnose. This program is hard to get into since there are so many people applying for it but your case should make them at least consider you. I applied in 2008 and was turned down. Their website should have information, I am sorry I don't have the link handy. You have to get your doctor to put together a package on you to send them. There was a show on tv a couple of months ago that showed what happens in this program. You are examined by a team of specialists and they try to figure out what is going on with you. As far I know it is almost impossible to get doctors to change their records on you unless they are open to being convinced that they are wrong. It has been my experience that doctors who are quick to blame the patient have ego and control problems and will not go back on their diagnosis. So what you have to do is go to nationally ranked specialist in the fields and get them to examine you and have their diagnosis on record to overturn the local yokel doctors. I know you have been to Vanderbilt and are going to Mayo in Jacksonville so that should help a lot. Tell them what happened but don't tell them about the psych diagnosis unless later on (several visits later) you feel comfortable. When they diagnose you with something have them spell out the effects of the diagnosis in writing somehow show you can show your family that your symptoms are real. Also ask them if your symptoms indicate that another medical specialty should get involved with them. I know several people including myself have had our symptoms written off as psych problems and have had demoralizing results from that happening.
  14. I get a tightness in the lower legs that feels like I have compression strips wrapped around them. This is not particularly painful but it is discomfort. This also is not cramping. I was told that this may be a build up of protein and is similar to what people with chronic venous insufficiency have. The person who told me this was not a doctor but was a representative for a company that sells sequential pumps that are used by chronic heart failure patients to squeeze the fluid from the lymphatic system in the legs.
  15. When my daughter developed pots in 8th grade the first symptom was severe anxiety; in fact the anxiety kept us from diagnosing the pots until after she was off of most of the medications. I have pots and have also dealt with anxiety. For those that have pooling, anxiety may be (my opinion) a result of increasing levels of norepinephrine as the body tries to combat the pooling. There are also other chemicals involved in regulate blood pressure and blood flow that may be out of balance but I don't know enough about it.
  16. My personal experience with cymbalta is just that a personal experience so I hesitate to declare it a bad drug. Many people on here do take cymbalta and are helped by it. Going back to my experience when I was on it I did feel a little better and told people it had helped but what I found out was that my going into dry heaves several times a day was a side effect from too much norepinephrine. I still get the dry heaves but not nearly as much and usually when standing too long or upset. The worst part of cymbalta was withdrawal. I think that they should test for norepiniphrine levels before prescribing it to sort out those whose levels will be made too high. I have been looking for a definite answer to what high norepiniphrine levels do to the body and mind but haven't found a whole lot. One study showed that high levels cause aggression and violence and so can falling levels which is why withdrawal can be a problem for some. Others say it effects the heart but they don't define how it effects it or what levels are considered dangerous except that it raises heart rate and blood pressure.
  17. A clonidine suppression test reduces the amount of norepinephrine produced by the nerves. If the over all serum norepinephrine does not fall by a certain percentage then that means a pheo is present and producing norepinephrine. Cymbalta prevents the reuptake of norepinephrine so that it increases the amount of circulating and neural norepinephrine. Some pots doctors use cymbalta and it does help with some of the symptoms however they have to be careful that the person they are giving it to does not already have high levels of it. In my case my supine ne went from 456 without the drug to 585 supine a few months later on cymbalta; the upper reference limit being 499.
  18. Potsgirl gave good advice. I want to emphasize that you need a lawyer. It seems those with lawyers have a better chance of getting approved. You will probably get turned down twice and then have to request a hearing with a social security judge; that is where most people are approved. A lawyer will also be helpful in deciding if the doctors need to do a better job documenting your condition.
  19. Thanks for the question Stacy, I wish you had been my doctor back then. Vanderbilt just sent me the catecholamine values but I knew from reading their website that I should be checked for a pheo. I showed several doctors the results and basically they said they don't deal with that. I finally went to an endo who did give me a test for serum metanephines but I had to practically beg for the results from his office. The results were near the upper reference limit but that could have been because the lab techs just stuck me sitting up. I wrote Dr. Pacak at NIH and gave him my values and asked if I should push the doctor more to be more aggressive or if I was making a mountain out of a mole hill. He got me up to NIH for testing the next week. Everything was negative except my supine norepinephine which was 580 due to being on cymbalta. They suggested that I get a clonadine suppression test once I got off the cymbalta but at the time they were ruling out a pheo. In fact my serum metanephrine leve was normal. I haven't gotten the clonadine test but I am fairly certain I do not have a pheo and the high standing levels are a normal reaction to very severe pooling. I was hoping for something that might be fixable such as a pheo.
  20. I suspect that they might affect the test but wait until you hear form the nurse before doing anything. No sense going through the problems caused by stopping your medicine if you do not have to.
  21. I went to Vanderbilt for a study a few months after Sunfish posted her chronicles. Her account was a big help in letting me know what to expect and I practically memorized them. Vanderbilt was a positive experience, the hardest part was sitting in a chair so long during the medication tests and the bland food got old after a week. I think one thing that happens is that there is a let down after leaving Vanderbilt because somewhere in us there is a small hope that they will cure us. Just keep this in mind if you start feeling down afterwards. I went through that even though I knew going in that there would be no magic cure. The second drawback is trying to get the local doctors to look at and do something with what Vanderbilt does find. When the catecholamine results came in I had been home several weeks and when it was revealed I had high norepinephrine levels I could not get the local doctors to look in to what it means or what to do about it. You might ask about follow up at their autonomic clinic as a patient once they get all your results.
  22. I am going to ask my doctor about clonidine on my next visit. I also want to ask about switching to mestinon instead of midrodine since I do not think midrodine does anything for me. I had to get off midrodine for a couple of weeks because the doctors office was having problems in authorizing a refill, I noticed no difference between being on and off. They also delayed renewing my adderal which caused me to go through withdrawal; that was not fun.
  23. Definitely a great video. Even though they said she died from pneumonia I wonder if dysautonomia played any part in her being susceptible to getting it. My personal experience is that I can go into bronchitis just from congestion in my ears and pneumonia quickly if I don't take quick action. There is so much that they don't know and so many variables in pots. It was interesting that he has a family history of dysautonomia.
  24. Oh darn, you got me beat on my supine norepinephrine levels mine was 450 at Vanderbilt and 580 at NIH. I was on cymbalta at NIH so that accounts for the difference between the two. I do have you beat on the standing level though mine was over 2100. I am kidding about the contest but I do wish my doctors would take my levels seriously I am on proamatine which is midrodine and kerlone. I was told that if they could control my pooling (44% drop in circulating blood volume when standing) my norepiniphrine levels would drop which makes sense but nothing is working. I have thought of asking for clonidine but I was put on it when I was getting off the cymbalta and as a result was misdiagnosed as bipolar due to the withdrawal and the drop in norepinephrine levels.
  25. Symptoms like that do happen to me, in fact I'm going through a period now with it. What is your blood pressure doing? If you don't have a blood pressure machine feel the pulse on your wrist. If you feel your pulse then you know the top number of your blood pressure is at least 80. If you don't feel it feel the pulse in your throat that would tell you that you bp is at least over 60. I felt really weak and my bp was 75/30 which is low. Your symptoms can be other things also including adrenalin surges trying to regulate your circulation.
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