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dannyg

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  1. Anyone go through the same thing? Before last year no issues at all perfectly healthy. December I was getting sick and developed pots. January my bowel movements stopped. Started losing weight suddenly for no reason muscle mass everything. February the protein in my urine started going up it's been at 30 ever since. Still have severe bowel issues constipation, I don't go for days at a time. March I started having infections urinary tract infections and signs of infections. They still continued till this day. June they told me it was kind of diverticulitis and remove the section of my colon. In May I had an MRI that said my gallbladder was full of sludge. The CT scan I had in January and March said my gallbladder was unremarkable. I had my gallbladder removed last week, they did a biopsy on my liver. I have fatty liver and the results came back that my portal vein is inflamed probably from the disease gallbladder. My gallbladder was having gangrene in it that's in the report. One week later I am still very sick with flu-like symptoms, dark cloudy urine. When I get a urine test it shows I have leukocytes, and my blood test show I have an infection somewhere. White blood cell count is slightly elevated and sometimes the MCV and other numbers are off a little. All the doctors do is give me antibiotics for two weeks, and as soon as I'm done and sometimes the infections never go away. I still have the protein in my urine. I have been to a nephrologist he said it's not my kidneys, my GI doctor says it's not my liver, and all I keep being told is that sometimes things happen we can't explain. Before the surgery about a month ago I made an appointment with an autonomic specialist. He told me to come back for testing after I get rid of all of these infections. They are interfering with my autonomic system causing it to be inconsistent. He cannot give me an accurate diagnosis while I have infections causing problems. Has anyone gone through this? Is this pots that's doing all of this causing these infections kidney problems? I have been tested for every hepatitis autoimmune disease, hormone test, and everything comes back good. Nobody can explain why I constantly get these infections or what is causing my body to shut down. Every week it just gets worse. Anybody with pots go through the same thing? I have 11 months of no answers and I can't even find out what kind of pots I have or what because medical conditions keep popping up
  2. I am currently going through the same thing. I have to meet with a surgeon next week about my gallbladder being taken out, and I have been having a constant inflammation in my body. Turns out it's been my liver. All of my liver enzymes are perfect but they found it with a fibroscan test, and a HIDA scan. When she was doing the HIDA scan she said my liver was enlarged. Look deeper into the liver or kidneys could be a possible reason
  3. Exact same issue I'm going through right now. I've been having constant inflammation and infections. I went to a nephrologist. My protein is at 30 and I have very high creatinine at the upper limit. My urine creatinine. He told me my blood creatinine is okay my urine creatinine is very high. He told me I need to see a GI doctor about my liver. He said all the creatinine coming out in my urine means my kidneys are doing their job removing the creatinine. There should not be that much creatinine in the urine, and that comes from the liver. The liver is supposed to keep it in your body. I went to a GI doctor all of my liver enzymes were perfect. Except one that said I might have fatty liver possible Nash. Nash has the chronic inflammation of the liver which would be a chronic condition that could cause pots. And pots symptoms of low blood pressure irregular heart rate circulatory problems. I had a fibroscan done at a hepatologist office. I have over 67% fatty liver, and Nash. Many times if you have a liver problem it affects your kidneys, I kept insisting I had a kidney problem it's coming from the liver. Now I just recently found out my gallbladder is not working at all when I had a HIDA scan test done. So I have some severe medical issues going on that are either making my pots symptoms worse or caused my pots. But if you have a lot of creatinine in your urine and your blood creatinine is okay you need to look into your liver. Your liver could be causing problems with your kidneys.
  4. When I first got pots last year standing my blood pressure would go up it was 160/100. The last four months or so my blood pressure has been staying very low even sitting down like 95 / 70. When I stand up it drops to about 78 / 65. I don't take anything or do anything different I don't know what happened. It just changed on its own all of a sudden. The strange part is when my blood pressure was high like that my pulse would be 150 155. Now my blood pressure is low oh, and my heart rate sometimes will be 120 when I stand up, sometimes it'll only go to 105. Very strange.
  5. Thank you everyone. I keep telling this friend of mine that that's not the problem. It's well within range the doctor didn't say anything. My blood pressure has been very low in the morning lately. I just checked it now it was 69/56 standing and walking for 5 minutes. Highest it will go up to its about 95/70 later. I know I need to deal with the autonomic issue and go see an autonomic specialist, but I'm having some other health issues going on that might be aggravating the situation. They are kind of monitoring me right now. Protein in my urine has been at 30 since February, and I beginning a lot of urinary tract infections and having high white blood cell count since end of April. When I don't have an infection and I feel okay my blood pressure does not go that low.
  6. I had my Cortisol levels checked. Wondering if the AM seems a little on the low side. I feel horible all day and it's within range but a friend of mine says it's too low on the low side that's why I'm so weak and fatigued in the morning. Do my AM number seem a little bit too low and could this be why I feel so weak in the morning ? It's 9.3 I don't know if that's a little bit to low if it would make a difference what do you think? My AM Cortisol. 9.3. Range. 6.0 to 18.4 My PM Cortisol. 4.9. Range 2.7 to 10.5
  7. This is why I'm looking for the root cause and not seeing an autonomic specialist yet at this time. An autonomic specialist will treat the pots symptoms, and if he can tell me exactly what's going on that would be fine. If you gave me a medicine to take and it got rid of most of my pots symptoms and was able to mask them that would be great, but then when my white blood cells go back up, that medication is no longer going to work. And switching medications to try something else might work for a while, but then if the medical condition acts up again that medication will no longer work. . I still have a medical condition going on. My white blood cell count has been at 12 and 13 for 2 years. My body has been showing an inflammation that has been going on that probably triggered my pots. All these times I've been in the hospital when they give me antibiotics and my white blood cell count comes down to 8 or 9, my blood pressure stays at 120 over 70, and I could stand and walk and my heart rate is only about 100 105. When I'm off on antibiotics and my white blood cell count goes up showing an inflammation in my body, my blood pressure drops too 80 / 60, and my heart rate goes to 140. I don't believe I will be able to control my pots until the medical condition that's causing my body to change the chemistry and give false signals to the nerves is found.
  8. Interesting. Friend let me use her account. Hmmm
  9. Seems I found my root cause of POTS after 8 months. Last Liver test came in and I have NASH. Non Alchoholic Stepto-Hepatitus. A form of fatty liver disease that is more seeious since it leads to Cirrosis. It is an inflammed fatty liver. Yes I probably do have POTS because of this, but a lot of the symptoms are from the inflammed liver. Don't know yet what the doctor will say and how to deal with the livdr issue I just got the results. If this can get better with the liver, then I will work on the problem with an Autonomic Specialist. At this point I dont know how many symptoms are being caused by the liver or from POTS. I have to work on the liver problem 1st. The constant inflamation with my body trying to fight off the inflamation caused a big problem with my whole system. And its getting worse.
  10. This is me. I get lightheaded but havent passed out or had other symptoms. I was at a new doctor last week, my pulse was 82 / 62, the nurse in the doctor's office told me I should go to the emergency room right now. I told her I ain't going nowhere it gets worse than that. I told her check again in 10 minutes It'll be different. She did and it was 115 over 80.
  11. I fully understand what your saying. But I have to get to the "root cause". I dont want to waste time treating symptoms. Yesterday I went to a new GI doctor. He looked at all of my records. He said he thinks he knows what it is. He sent me for a full liver panel. Hepatitis, ANA, and 6 other tests. Depending on the results even if they're inconclusive, I may need a biopsy on my liver. He asked me who diagnosed me with pots. And I told him all my symptoms and what's going on. He knew about pots and dysautonomia. I have felt for a long time, and he feels it's not an autonomic system problem. It is way more than pots. It is an autoimmune problem. Something is attacking my system. The white blood count being slightly over the limit for two years, is an immune problem, my body is trying to fight something off. When your body constantly tries to fight something off it can cause your whole system to go Haywire. My ALT in my blood, the Protein in my Urine, have been up for a long time. Something is causing my kidneys to be bad, and it could be coming from the liver. He is testing me for autoimmune hepatitis, and Primary Bilary Colagitus. Back in December that therapist when she was testing me she told me she cannot help me because it's a medical problem going on. The protein in my urine, the alt being up indicating a liver problem, I'm urinating out all my calcium, my body is not absorbing food, my loss of weight and muscle mass for no reason, are all indicators of an immune problem. He is not so sure and I have never been sure that this is just all pots and an autonomic problem. Something is causing my body to attack itself and I have to find out what it is first. I blood test and urine test numbers are coming back worse every 3 or 4 weeks when I go for test. If it was an autonomic problem, it would not cause protein in my urine to go up, and my liver numbers to go up. There is some medical condition going on that did all of this and I'm soon going to find out what it is.
  12. I will vvery soon. I'm going to eliminate any medical possibility in the next few weeks then look into that for sure. My numbers for blood sugar, liver ALT/ AST numbers are up, and Kidney numbers are up. I been reading in the Chronic Kidney Disease facebook group and the Liver group and they have a lot of the same symptoms I have. Changes in blood pressure, fatigue, heart racing, circulatory problems, weight loss and muscle loss for no reason. But then some of them on reading have an autoimmune disease that caused there kidney problems and liver problems. But I will be going to see an autoimmune specialist if my numbers come back they had with these tests coming up in the next week and a half two weeks. Either way I will go
  13. I eventually will. Soon as I get kidneys, ballbladder, and liver tests. If thats not a peoblem, then to an Autoimmune Specialist. I'm in an autoimmune Facebook group, where a lot of people that symptoms like I have, liver and kidney numbers like I have come to find out that's what caused their pots and autoimmune problem. It was unknown and undiagnosed for years. I want to get to the root cause if I can. Whatever is going on is causing it to get worse. I've been getting up in the morning and getting real bad. My blood pressure this morning was 72 over 60
  14. In December I went to the ER after I found out my BP Drops and HR went to 140 when I stood up at home. They admitted me for 3 days and were going to do a TTT but the straps were broken and they never got it fixed. A Neurologist came to see me, had me stand up by the bed, checked my BP and Pulse standijg up and sitting down, and said "You have something called POTS," That was it. Went to an Endocronologist after I got out my old PCP sent to see me that did the same thing checking my standing and sitting BP and Pulse, he diagnosex me with ,"POTS, Dysautonomia, Neuropathy,". All Im ever told by 3 Cardiologists and all other doctors is "wear compression socks and eat more salt,". Thats it. My BP is 140/95 sitting most of the time, and when I stand its 92/65. So they cant give me anything to control my BP because I have to much of a swing in numhers. They tried giving me florenef before, ended up in ER, went way to high, they cant give me anyyhing to lower it cause its to low when I stand.
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