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Old 05-10-2013, 07:46 PM   #16
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Re: New! Please Help!!

I was discharged late Thursday night. I'm not doing any better in terms of the nausea and vomiting. I somehow managed to lose weight in hospital. I was getting great care and iv Meds for pain, nausea, etc until palliative care was consulted. She was great and added more Meds, but saw that my PCP, who is also a pain/addiction doctor, but mainly took on my case for its complexity. She asked if she could call him, I said yes, and next thing I knew she had cancelled all my medications except Tylenol and sublingual Zofran. My husband had emailed my doctor the evening prior about how frustrated we were he had been ignoring me for weeks. He emailed back and said I was using Aldosterone as a red herring and needed to focus on the psychosomatic issues. He also said my nausea/vomiting and weight wasn't reflected in my labs, yet he hasn't seen me in a month and yes, at that point I had only lost five pounds. I was so mortified and hurt as this was the same doctor that a year ago said I incredibly wronged by the medical community and because my case was so atypical and rare I never got the care I deserved. He promised this would never be the case. It wasn't until the nephrologist in my admission about 10-11 weeks back blamed my high Aldosterone on diuretics and called it diuretic induced edema. I cried myself to sleep so nauseated and in do much pain emotionally and physically. I prayed that someone or something would prove I'm not making ANY of this up or using Aldosterone as a red herring from my real issues. I was told they had also cancelled my endocrine consult even though they drew another Aldosterone and Renin level. I was devastated. The morning came and in walked an older gentleman with an adorable bow tie. He handed me his card and I immediately saw 'diabetes and endocrine' on his card. He informed me that he wanted to talk to me and would be back at 4:30pm. He followed through and we had a consult from 4:30-7pm even though I was being discharged. I had done research on him in meantime. He has been an endocrinologist for 40+ years and was deemed 'the smartest man in town.' He said he had to admit that he doesn't usually do hospital consults, but after seeing my labs and hearing I had tumors seen on CT. He also admitted he wanted to see me because he loves complex cases and knew mine was one to put on the charts and one that is talked about at national conferences. We went through everything from beginning to end. Went over levels and what my dr and the endo dr I saw had said saying it wasn't consistent with primary hyperaldosteronism, etc and mainly due to high renin levels. I also informed him that while inpatient the nephrologist called it diuretic induced edema. He starting laughing is disbelief. He asked me if I wanted to know what my doctor, including the endocrinologist did wrong. Of course I said yes. He continued to tell me that BOTH my doctor who thinks I'm using Aldosterone as a red herring as well as a certified endocrinologist ordered the renin incorrectly three times. They ordered direct renin instead of plasma renin activity. He said the direct renin can be used, but needs to be calculated by dividing by 8.2 and when done my ratio is consistent with primary hyperaldosteronism and renin was low with Aldosterone levels over 200 and 300!!!! He also said both my 24 hr urine collections could not be used and were inaccurate because you have to be salt loaded with at least 10 grams of salt and with my nausea and vomiting and no salt loading pheochromocytoma could not be excluded. Somehow my prayers were answered and I have a new endocrinologist working me up. He drew seven tubes of blood, had picc line today and CT of adrenals. He said venous sampling will be next if deemed necessary. I'm also repeating 24 hr urine collection. As far as nausea/vomiting idk what to do I'm miserable and the pain in my lower abdomen is debilitating. Just wanted to update you and get your opinion. Thanks so much for caring. Appreciate everything.
Lizzie

 
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Old 05-10-2013, 08:09 PM   #17
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Re: New! Please Help!!

Wow, what a story. A happy ending with a good endo who sounds like he really knows his stuff! I was just thinking of you when I saw your post. He sounds like a Godsend, and I think he will get to the bottom of it all! Did he talk at all about your headaches and what those might be from? And the nausea/vomiting? I would bet he ordered pituitary tests and will follow that up unless you had brain CT in hospital. I know you still feel so sick, but at least there is hope on the horizon, and you have someone interested in helping you rather than blaming you for what is wrong. What other nausea meds have you tried? Maybe a combo would be worth trying since the Zofran isn't helping. That is some stubborn nausea/vomiting! Nausea meds have different methods of action, and some will work better than others depending on cause.

 
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Old 05-14-2013, 11:24 AM   #18
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Re: New! Please Help!!

Just wanted to quick update you...my PCP spoke with this new endo doctor. He has does 180 on way he's been treating me, but he couldn't fully admit he f****d up many things as well as first endo doctor. Apparently the new endo, Dr. Notman, is publishing my case in medical journal. My PCP said still unsure of primary hyperaldosteronism, but confused as that's not how Dr. Notman sounded, but checking for other issues...renal tubular acidosis, potassium wasting syndrome, etc. BUT I don't trust my PCP and see new endo on 22nd. I didn't have scan of brain, but the nausea/vomiting is still happening and thinking back started at same time HA's started and BP spiked. My BP yesterday was 147/90 and HR 132 (baseline: 90/40 and upper 70's) and I'm down 125 lbs now in last six weeks or so. I'm just not where to turn with the N/V and increased pain as well as other symptoms that all started approx. same time. Anyways...I don't know how I will keep hydrated continuing on this path, but hoping this new dr can make a diagnosis and soon! Thanks so much again...
Lizzie

 
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Old 05-14-2013, 01:07 PM   #19
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Re: New! Please Help!!

Good to hear from you Lizzie. Maybe your PCP would give you a combo of Zofran plus another antiemetic. Have you gotten any of your lab test results yet? It will be interesting to see what this turns out to be but the academics are far less important than getting you well and stabilized. I wish you didn't have to wait another week to see the endo. Was your potassium rock bottom again when you were in hospital? If this turns out to be a pheo, it is the one thing all med students learn about but never see, because it is so rare. I'm glad your PCP has changed his tune! Keep us posted when you hear anything new.

 
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Old 05-15-2013, 03:06 PM   #20
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Re: New! Please Help!!

No endo updates yet! But did see both my cardiologist and colorectal surgeon today. My cardiologist is not happy with both BP and HR and with the nausea, vomiting and dehydration it's hard to try and manage. My BP was 130/90 (baseline 90/40) so for me still high and resting HR 132! He said its adrenal related as well as bad dehydration again...already. He disagrees with my former PCP for stopping phenergan and added a motion sickness med he uses for his congestive heart pts. My colorectal's nurses first words were 'you look tiny and tired' I think I've been so swollen and edematous for two yrs that people aren't used to my weight being here, which still is 18-20 lbs heavy for me, but still down 25 in 6.5 wks. He said my abdomen appears hard and pouchy and is thinking may need to restart my tube feeds. That means putting pG-J tube back in which was not fun, its painful, and I hated tube feeds. I don't want this to happen, but no idea what's going on my cardiologist was going to try and call me with endo report and new CT results. If he does I will update ASAP. Hope your well! Xoxo Lizzie

 
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Old 05-15-2013, 08:03 PM   #21
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Re: New! Please Help!!

I would wonder what your serum albumin level is. Blood proteins are low in starvation and you fit that picture with all the vomiting and not being able to eat. That causes both swelling and dehydration. The albumin (protein) acts like a sponge to keep water in the blood. When the sponges are insufficient, water seeps out of blood (dehydration) and into tissue (edema). You can get IV albumin infusions that help both. I would ask Dr about that. I hope the new anti emetic helps. Has cardiologist ever mentioned a beta blocker to reduce heartrate and BP? That would make you more comfortable and blocks the excess adrenaline effects if you do have a pheo secreting adrenaline. Also, are you on an Ace inhibitor or aldosterone blocking diuretic? That type raises your potassium, an added bonus. Thanks for updating. Hope the tube can be avoided!

 
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Old 05-19-2013, 03:30 PM   #22
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Re: New! Please Help!!

Things have just gotten worse I'm at a loss of what to do. I ended up dehydrated again and my PCP sent me to ER on Thursday and I got there and my vitals were off...BP super high, HR 120-138, temp 99.5. They were really nice at first, gave me meds to help, etc. I got really nauseated as the bag of fluid was almost done and was dry-heaving. Asked nurse for something more for nausea...30 min passed and the dr came in and was so rude. Basically they read chart from admission and read what my dr had said about me to palliative care before he knew anything that was happening or new endos thoughts. She outright said if I admit you, palliative care will wonder why because they have nothing more to offer you. That was code for---we read it and read what your dr was saying and so were going to do nothing. Somehow my potassium was higher than its ever been in my whole life. My urine was borderline UTI again. Pos ketones, bilirubin, trace blood, pos wbc's, pos 3+ bacteria, spec gravity 1.039 after fluids, hazy, and amber/turbid. My liver enzymes are all high, lipase low, albumin and protein Abn high which they are usually low d/t malnutrition. BUN/Cr high normal (cr 1.1?) and both sodium and Calcium very end of high normal. Platelets low? And they sent me home saying couldn't do anything. I had no urine output in over 30 hrs when went in and had no way to do 24 hr urine. I called endo that day as well and they cancelled appt b/c they need that urine. I asked them how I'm supposed to flow up if I can't pee. After fluids BP still high and HR still 103. They said nothing we can do follow up with who you can outpt. My cardiologist was sure I'd be admitted. I called him and my PCP in tears as I have nowhere to go to get help b/c my old PCP has ****** me every which way. My new PCP thinks I may need to go out of state, but I saw her Fri as I needed more fluids and still only got 190 mls for 24 hr urine. I had to take 10 grams of salt tablets and I was in fetal position in so much pain, cramping, spasming, and nausea was awful. My PCP said have to get into nephrologist ASAP as well. I'm still battling this dehydration, nausea, and vomiting and now I have no endo appt until they get urine. I'm bringing Tom am as labs all closed yesterday at 11am. I also have this new picc and its swollen and a tiny bit sore. My friends that are onc nurses said looks really swollen around site. I've had bilateral blood clots with every picc but one!!!!! I never get the hallmark signs either, but I don't even have anywhere to go to have it checked because of being blackballed everywhere thanks to old PCP. I've lost my energy to keep fighting this...whenever a dr can't figure it out they turn on me and suddenly become psychiatrists. My cardiologist, new endo, and new PCP know this is all real and they are trying to help, but if this urine isn't sufficient I don't know how to get one without good urine output. I cannot do those salt tablets again. I am thrown as to how my potassium that usually drops big time spiked to its highest ever when I'm even more dehydrated and sick from vomiting?! Anyways...I don't know what to do. My friends and family are worried...they thought my last dr was only hope because he knew how wronged I've been by med community and then he did same thing. I hope if I get urine in Tom they will reschedule endo appt soon or I'm going to go downhill sorry to vent!

 
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Old 05-19-2013, 06:44 PM   #23
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Re: New! Please Help!!

Your new Drs need to expedite things, like getting into the nephrologist. I would call the endo tonight and tell him his staff (?)cancelled your app't with him, and to please see you ASAP. 190 ml of urine in 24 hrs is outright renal failure. Is there a different hospital you can go to that won't have records that make you look bad? I would do that if I had to go to hospital again, and your old PCP should give you a letter to take with you that sets the record straight if you have to go back to the same hospital. Can you get to the Mayo Clinic on an emergent basis? Your new PCP may be able to pull some strings to get you admitted to the hospital at Mayo Clinic, where they will surely get this straightened out. Who told you to take 10 grams of salt tablets and why? Sp Gr of 1.039 reflects severe dehydration, and that was AFTER your IV fluids? Your PCP or cardiologist or endo can do a direct admit instead of going thru ER. I can see why you are so frustrated! I hope your endo or PCP can help tomorrow. There is always a Dr on call on weekends and nights too. I would seriously try to get into Mayo on emergent basis where you'll get the workup done in one tenth the time.

 
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Old 05-26-2013, 06:52 PM   #24
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Re: New! Please Help!!

Things have just continued to spiral I haven't felt this crappy since I was having daily obstructions and in the midst of four back to back major bowel surgeries. I ended up seeing my new PCP and she pulled PICC line on Tuesday. She didn't order US, but I had a gut feeling and went to medcenter that had radiology. I was seen and dr noted swollen, slight redness, and warmth. US done and did have clot. Thankfully, the PICC was in a more superficial vein, so instead of being admitted, they just started lovenox and Coumadin. I was in desperate need of fluids, so I let them try at my new pcp office. They poked 8 times with three in feet and nothing. They sent me Friday for IJ (jugular line) and I had a liter of fluids Friday, but this wknd has been one of my worst. I have lost a total of 30 lbs now despite getting fluids I've continued to puke EVERYTHING!! and still little urine output. I see endocrine Tuesday at 2:30pm and hope to hear about nephrology appt early this week. I'm having a hard time with just fluids. My feet are cramping and when puking I get spasms underneath my ribs. Still all same symptoms basically. I don't know what urine Aldosterone was, but the sodium, potassium, and creatinine with salt loading were all low and idk what that means. I was checking labs and stumbled upon a misc lab from urine that was ordered on the day of my last appt with Dr. Waller, my former PCP who has made my life a living hell. I was shocked!! Angry as ever...he ordered a urine screen for DIURETICS!!!! He really had to check to see if my Aldosterone was still high from diuretics!! I hate him for even doing this, let alone not telling me!!! Of course it was NEG for all eight he screened. I'm just miserable and afraid I'm never going to get help. Hope your enjoying the holiday wknd!
Lizzie

 
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Old 05-28-2013, 02:38 PM   #25
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Re: New! Please Help!!

No idea what to think...saw endocrine and apparently he said he had no idea what's causing symptoms. One CT shows two adenomas and other shows normal. The Aldosterone level they drew in hospital while getting IV saline was suppressed from salt and although he said my ratio was astronomically high (200:1 and 500:1) since the salt suppressed the Aldosterone it's not primary and thinks my levels were so high from the potassium loading for the hypokalemia. This still doesn't explain why my initial level in October was elevated on no diuretics or potassium as well as my level that was drawn 8-9 weeks post stopping diuretics and potassium. They were both 103 and 127, so nothing makes sense, but there's nothing I can do as he said all that matters is the level was salt suppressed so its nothing. He said my omega 3 is drastically low and omega 6 very high and ratio puts me in inflammatory response and that puts you at risk for heart attack, stroke, cancers, etc but he said that's not his specialty and basically I have no answers. I've just given up.

 
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