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Old 04-30-2013, 05:11 PM   #1
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New! Please Help!!

Hello, I am new to this forum and hoping I can get some answers. I have a very complicated case and the doctors have no idea what's going on. My Aldosterone has been elevated as well as Renin since October. I had CT and have two adrenal adenomas. The tricky part is with primary hyperaldosteronism the renin is usually low. I first had levels in Oct and they were high, then was put on diuretics as I have edema, acute hypertension, and high HR always. My labs were even higher than in October (this was End of Jan) and I had been admitted to ICU with severe hypokalemia three times. The nephrologist questioned diuretic induced edema and high levels d/t starting diuretics, but I stopped all of them. My hypertension got worse and cardiologist started labatelol and cardizem. After 8 weeks off diuretics (suggested is 2-4 wks) I just had labs redrawn and both Aldosterone and Renin still elevated. I'm not sure on Renin, but Aldosterone is 140. They are thinking could be renin producing adenomas or pheochromocytoma. I have very low urine output and have to self Cath from atonic bladder. My urine output is only 200ml/day. My bun/cr are stable besides in Feb I had pre-renal failure. I've had bad headaches, numbness/tingling in hands/forearms/feet. Had nausea vomiting constant for 40 days and have lost 14 lbs since April 1st. I don't know much about this new adrenal stuff, but I'm miserable. Any help interpreting these levels and symptoms greatly appreciated?
Thank You.
Lizzie

 
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Old 04-30-2013, 06:25 PM   #2
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Re: New! Please Help!!

These adrenal tumors get complicated, but I may be able to help explain some of it. The low urine output is due to aldosterone's sodium, water retention effect on kidneys, which causes the edema and also hypokalemia. The hypokalemia was probably made worse by the diuretics. An aldosterone blocking, potassium=sparing diuretic is best in your situation, spironolactone, as it treats the hormone that is excessive. You may also have Cushings with these tumors=an excess of cortisol. Have your cortisol levels been checked? With high heart rate and BP and bad headaches, pheo should be ruled out. Those cause adrenalin production in excess, so you are constantly in a high "flight or flight" state. Very uncomfortable and also very rare. You should be under the care of top=notch endo's and surgeon must be very careful if a pheo is present. I would consider for something like this going to the Mayo clinic in Rochester, unless you feel very comfortable with your Drs locally.

 
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Old 05-01-2013, 02:04 AM   #3
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Re: New! Please Help!!

Thank you again for your response...
I have had a rough night...not slept at all. I tried eating again and threw up everything I attempted to eat...making me very nervous. Thank you for the explanation. It makes sense...I am a nurse by trade, but been unable to work in 3 years due to everything that's happened. I'm not very comfortable with the endocrinologist I'm seeing. My pcp who took on my case just about a year ago and only takes on comes cases is the one who originally started looking into endocrine issues and found the high Aldosterone and Renin. He referred me to an endocrinologist after my Aldosterone hit 330 in jan/feb, but was stumped by the high renin as well. I've always had scary low BP so this hypertension has been very symptomatic. All the urine retention started in late 2010 and I went from 87lbs and failure to thrive with a feeding tube to blown up with edema and urine output dropped drastically. The headaches and hypertension got worse once diuretics were stopped. I've always had issues with my potassium since I was 19...I actually cardiac arrested. It's been better since stopping diuretics. They had switched to Spirolactone, but it was then held as it could falsely lower the Aldosterone levels. I just don't know much about all the different types of tumors...adenomas, renin secreting?, pheochromocytomas, etc? I did have cortisol checked and I believe it was normal. They also checked for renal artery stenosis and that was ok. The endocrinologist appt was April 15 and he spent all of ten minutes with me and I have no follow-up appointment and although labs are high for third time he wanted me to redraw again 4 wks from the April 15 draw and nobody can explain why? My pcp was calling to try and figure out why?! It's actually my hormone dr who's internal med and my cardiologist who are very concerned and pulling trigger on further imaging, etc and don't want me not monitored at least every 7-10 days. I just feel awful and I don't know where to turn anymore? What do you think I should do? Try and get into Mayo? If its pheochromocytoma is that dangerous? It's all so confusing and complex and nobody wants to take on my case or touch me with a ten foot pole d/t my other medical issues caused by the rare bowel disease and history of major complications? I just want to feel better! I greatly appreciate and guidance you have. Thanks again.
Lizzie

 
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Old 05-01-2013, 05:02 AM   #4
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Re: New! Please Help!!

It would help me to know what rare bowel disorder you have, so I can better understand why you might be vomiting so much, and does anyone know why your BP was so low before all this started? I am glad they checked you for renal artery stenosis. The K+ problems are no doubt exaccerbated by the vomiting, as well as the high aldosterone causing renal loss of K+. High renin occurs as a result of low blood flow to the kidneys, which can occur from low BP. That triggers angiotensin, which vasoconstricts and raises BP as a protective mechansim, plus aldosterone secretion to cause sodium and fluid retention to rsaise BP. Normally good compensatory mechanisms, but can cause problems if they persist beyond when they are needed. The aldosterone is likely being secreted by the adenoma in adrenal gland. A pheo secretes epinephrine (adrenaline) and also raises BP and heart rate. These are benign, usually very small tumors, less than 1 cm in size. Adenomas can occur in any endocrine gland but the pituitary, parathyroid and adrenals are most common. You sound extremely sick, and I am worried that your endo doesn't get the severity of your illness. You need a comprehensive endo workup, including thyroid, and I would get to the Mayo clinic ASAP. I don't know if they accept patients on an emergency basis, but I would ask your PCP and cardiologist to try to expedite that. It normally takes 3-4 weeks to get in for appt's, but they may have a system for dealing with urgent cases. A university clinic at a large university is another possibility, but appt should be expedited. Have you had tests done yet for a pheo? That should be done ASAP so results are ready for the Mayo or University clinic. Pheo's require surgical removal and the aldosterone secreting adenomas would be removed too. Is your GI Dr. involved in trying to control this vomiting? Have you had an MRI of brain to rule out pituitary adenoma? Headaches and vomiting can occur with those, as well as visual disturbance. You may need to be on hyperalimentation for any surgery to promote healing, positive nitrogen balance and electrolyte control. This is no job for amateurs. You need top-notch specialists who understand all this thoroughly. Your survival is at stake, so I would not waste time on people who seem uninformed, uncaring or complacent about your condition. I would get your Drs to intervene on your behalf to get you into the Mayo or University clinic ASAP to bypass the usual waiting period that could be weeks. Good luck and please keep posting. I think the beta blocker for BP and heart rate control is good. I am surprised you are on a calcium channel blocker instead of ACE inhibitor, as an angiotensin converting enzyme inhibitor would be more helpful for BP in my opinion. ACE converts angiotensin 1 to angiotensin 2, which is a potent vasoconstrictor that raises BP. You might want to talk to your Drs about trying that instead or in addition to the cardizem. It fits right in to the mechanism causing your hypertension. Numbness in hands and feet likely from Vit B12 and/or folate deficiency, which can be checked in serum and supplemented.

Last edited by ladybud; 05-01-2013 at 05:07 AM. Reason: added last sentence

 
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Old 05-01-2013, 09:01 AM   #5
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Re: New! Please Help!!

Ladybud...
Thank you again for taking the time to respond and so thoroughly. I will just continue to only post on this thread. I'm not sure how to combine them otherwise. In regards to my bowel disease, everything started about 20 yo with severe constipation. The GI did colonoscopies that were normal and dx me with IB-C and I tried numerous prescription and OTC laxatives per GI in order to try and move stool through. After years of just feeling general malaise and toxic at times, I got a second opinion. The GI diagnosed me pretty quickly with colonic inertia (neurogenic disease that you have in utero, but doesn't precipitate issues until 2nd or third decade) and after much testing to confirm and r/o anything else I was told I needed a total Colectomy with ileorectal anastamosis. The complications started early and it was a cascade of events that have me today, eight major surgeries later with an end ileostomy on left side. I ended up having a non-typical case and was always that 1:?? patient. The disease had affected my rectum as well as most of entire digestive tract. I have spent more time since first surgery in Jan 2008 in the hospital than not and its been a never-ending nightmare. I've had so many complications and with every surgery it's something such as abscesses (had these to some degree with EVERY surgery), DVT's, hemorrhaging, too many bowel obstructions to count, malnutrition, dumping syndrome, etc etc etc). They've clumped everything together as global inertia. I live in Michigan and had first three surgeries locally, four at CLeveland Clinic, and last August again locally. The last surgery was a three-surgeon surgery (gyn/onc, colorectal, and urology). I had been c/o severe pelvic pain, nausea/vomiting, painful urination, painful sex to point could not be intimate at all, etc) and after a year and multiple diff hospitals (UofM, CC, Rush in Chicago, and specialist in Cincinnati) and too many scans to count a last hope appt with a new local gyn/onc she felt what she thought was a mass and ordered an MRI I had never had which showed a small backpack sized mass full of inoculated fluid, cysts impinging nerves, so many adhesions it took 3.5 hrs just to get in, entangled uterus/ovaries, etc). Nobody wanted to do surgery, but my current pcp said it was absolutely necessary as the fluid would eventually become septic and they had to r/o malignancy. He basically had to beg/plea and set up the surgery with every precautionary action he could think of to decrease complications. They removed everything and did major adhesion lysis with barrier spray for re adhesion issue and despite a large abscess the surgery went better than expected. Two weeks post-op I had drastic increase in weight and had edema and low urine output leading him to investigate down this road to where we are now, but ever since my last admission to hospital in town he has been disregarding issues/symptoms and its been my hormone specialist and cardiologist (hormone dr referred me to with high BP and tachycardia) have been the ones concerned vs my pcp who has been, but d/t the nephrologist that consulted me in hospital has been doing things in slow motion. In a nutshell, the nephrologist blamed high levels on the diuretics he had prescribed and termed in diuretic induced edema. He thought with six weeks off that levels would return to normal and symptoms resolve. I waited 8 weeks (most data says 2-4) and these just came back last tues and like I said the endocrinologist did nothing but tell me to redraw in 4 weeks and since renin was high as well it was not from the two adenomas found?!? I was very confused and it made no sense to keep waiting. I called my pcp and as of yesterday he had not gotten back to me so my husband called and laid into them as it had been 6 days since they said they were going to call. I just got a call from my hormone dr and they apparently talked with cardiology and she wanted me to inform him to go ahead with whichever scans (cardiology wanted to make sure she was ok pulling trigger d/t my hx of many CT's and radiology stating 'only if necessary' d/t radiation exposure) he thinks should be done. I had abdomen in Feb?! He had mentioned chest, but I'm thinking I should suggest head as well to get other glands? Hoping this LONG WINDED (sorry) post helps explain a bit more my situation. Again, thank you for any info you have!
Lizzie

 
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Old 05-01-2013, 12:21 PM   #6
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Re: New! Please Help!!

Wow, you have been thru hell and back it seems. I think another option to doing head MRI is doing a pituitary panel on blood to check hormone levels and do MRI if any are abnormal. I would do ultrasound of thyroid and hormone levels, plus anti-thyroid antibody levels on blood. Neither MRI or ultrasound involve radiation exposure like CT scans do. Pituitary tumors can press on the optic chiasm causing visual disturbance, so if that symptom is present, checking the pituitary is very important. Your low renal output and edema sounds like perhaps you became hypotensive in surgery and went into acute renal failure. That usually corrects in about 3 weeks. Are your BUN/creatinine still high? Why do you have an atonic bladder? Has anyone explained that? Mayo clinic is sounding better and better with your complicated history and history of complications following surgeries etc. I have been there myself and was super impressed with the Drs, facility, efficiency and speed at which things get figured out. Usually takes a week but with your case I'd plan on two. They are very helpful at making travel arrangements, lodging, organizing and reviewing your records in advance, etc. I would seriously consider, and check out your insurance coverage for going there. You would need a travel companion most likely.

 
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Old 05-01-2013, 06:15 PM   #7
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Re: New! Please Help!!

Ladybud...
Thanks again, so much, for your continued insight as this all has been an emotional overload and although I'm medically versed, I've been a peds nurse in oncology for most of my career. As far as my bun/cr I had pre-renal failure in February. Since then I was holding stable despite my super low ursine output (200 ml/day) but I had them draw a bmp yesterday and my bun was ok, but my Creatnine that had been trending upwards from 0.7-0.86 had jumped in 24 hrs from level in ER (0.86) to 1.07 in 24 hrs. I've been having very abnormal (for me) headaches and again today I've been laid up from massive HA causing severe nausea (have not eaten and barely drank much) and sensitivity to light and feeling like I can't see straight. I called the cardiologist since I still haven't heard from my pcp that husband contacted. I told him that my hormone/internal med dr agrees she's concerned with renin secreting tumors and pheochromocytoma or other?! I told them she's on board and feels CT's are fine considering the situation. So they are supposed to call tomorrow. As far as my atonic bladder...nobody knows why? Symptoms started in late 2010 after 6th surgery and that was when weight first drastically jumped for no reason and urine output decreased. The urologist actually said after urodynamics that my bladder was 'kaput' and needed foley or self cathing preferably. I am able at times to get some urine out. I see urologist May 9 for repeat cystoscopy (CT showing recurring interstitial cystitis) as well as cystourethrogram (CT showed adhesions from back of bladder to rectal area and need to r/o fistula. I would prefer going to Mayo...it was a fight to get 'out of network' even with great insurance (husband works for State of MI) but I'm afraid that even with a city well-known for our medical community, that no dr here can help me, ESP since these adenomas seem like a difficult diagnosis. I feel the drs here get overwhelmed and frustrated with my case and not being able to figure me out so they turn on me at some point or another and I'm the one that suffers unfortunately. I appreciate your time in responding. Thank so much.
Lizzie

 
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Old 05-01-2013, 07:54 PM   #8
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Re: New! Please Help!!

I understand the last part of what you are saying, that when Drs can't figure it out they want to pass the buck and get rid of you because they feel stuck and helpless and the egos can't take that. The beauty of the Mayo is that they have a TEAM of Drs who all work on your case simultaneously from every discipline needed, and they consult and talk to one another to come up with the answers and treatment plan together before they let you leave. They treat what they need to there and lay out the plan for follow-up when you return home. Your headaches, visual disturbance, photosensitivity and vomiting make me think you likely have a pituitary adenoma and may have SIADH (secretion of inappropriate ADH hormone from pituitary) causing you to retain water, dropping your urine output. This is an excess anti-diuretic hormone production from posterior pituitary that causes water retention only, diluting the serum and electrolytes and can cause serious hyponatremia and hypokalemia. You might want to read about it, again, not light reading, but could very well fit with your symptoms, especially if there is an adenoma. This is detectable by measuring ADH levels, serum osmolality, urine osmolality and would be the endocrinologists jurisdiction. Unfortunately your endo doesn't seem too aggressive with checking this out. If you can al least get an MRI of brain, that would help a lot, and the 3 tests just mentioned would help too. I wish I could do more! You can always print out these threads to take with you, to raise some questions and stimulate some thinking. Underline the key words and tests so it can be scanned over quickly.

 
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Old 05-03-2013, 02:57 AM   #9
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Re: New! Please Help!!

Should I go back to ER? I am in tears from the severe nausea. Haven't eaten anything and only tolerated a few sips since Turs when I threw up everything. I cannot sleep, cannot barely move from the severe nausea and headaches. I called my pcp yesterday and he did nothing! But call in zofran which hasn't worked in 3+ years. I weighed myself yesterday night and was down 20 lbs since April 1st just don't know how to go on like this anymore...
Lizzie

 
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Old 05-03-2013, 06:56 AM   #10
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Re: New! Please Help!!

I would, and I would insist on an image of brain, MRI best but CT ok if that's all they'll do. You are probably terribly dehydrated, in electrolyte imbalance, and ask them to run some of the tests I suggested. Maybe your husband can print these threads and go thru and highlight important words/phrases. Your potassium is probably bottomed out-you have to get help! Bless you. Keep us posted.

 
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Old 05-03-2013, 07:59 AM   #11
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Re: New! Please Help!!

Lizzie, If you haven't gone to ER yet, please coinsider going to the university hospital ER. If that is a different one than you've been to before, they will have a fresh perspective on your case and are usually interested in rare and complex disorders. Just take any documentation you can with you to show the tests you've had and the adrenal adenomas etc. They may have a new (and interested) endo see you there, and admit you for workup. It seems your other Drs have thrown in the towel and you need some renewed interest in your case. Good luck! Let us know how it goes.

 
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Old 05-03-2013, 11:53 PM   #12
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Re: New! Please Help!!

Lizzie, just checking in to see what is happening. Was thinking about you today, wondering if you ended up going to ER. If you are in hospital, maybe hubby can bring your computer when you're feeling a little better. I hope you are doing better and getting some more answers/help.

 
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Old 05-04-2013, 04:19 PM   #13
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Re: New! Please Help!!

I had rough 48 hrs...tried to get to ER yesterday, but was too weak and University hospitals are all 3 hrs away. My husband came home with my nephew and started puking everywhere. He was so sick so I tried to care for him. My dad came to get my nephew. I was up all night miserable and knew I needed ER. Woke up after two hrs of sleep at 8:30a and started dry-heaving. Could not get head out of toilet for three hrs. Had absolutely no way to ER so I drive myself...not smart. I ended up admitted and transferred via ambulance downtown to hospital. I just got here and just told doctor everything we've discussed. Hoping they help or send me to hospital that can I've had no output from ileo or urine since yesterday and even after 2liter bolus pretty dehydrated and miserable. I will update when I know more.
Lizzie

 
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Old 05-04-2013, 07:53 PM   #14
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Re: New! Please Help!!

So glad you are in hospital getting cared for. Hope your husband is doing better too. Thanks for the update. I'll be anxious to see what they do and what you find out. I just hope they keep myou long enough to get a thorough workup done and get to the bottom of it. Can't imagine vomiting as much as you have been. You do sound really dehydrated. I feel better though that you are getting another chance to find out what is going on, get the vomiting stopped, etc. I hope you have an extra smart, caring, compassionate Dr that won't give up until you have answers!

 
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Old 05-07-2013, 03:27 PM   #15
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Re: New! Please Help!!

Thinking of you and wondering how you are doing. Better, with some answers, I hope.

 
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