New endo lied to me about my test results, urologist can't help me

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/16/2007 8:55 PM (GMT -7)   
Hi-
I went back to the new endo and she told me all the results from my tests were fine, which was disappointing because I still hope for them to treat some of the obvious physical symptoms, like hyperpigmentation, low temp and other stuff.  I felt sort of weird about it because I do so much better on lupus and I clearly meet the criteria for polyendo def and have for years.  My other endo was more agressive about my situation.  Anyway, she told me that I have to be really careful on pred because with my labs and stuff I would definitely be prone to pred diabetes and my dose of metformin would not be enough.  I explained to her that with my recent development this year of the unexplained bladder symptoms that improved during my ACTH stim test when they gave me the shot, that without steroids, I couldn't urinate properly.  She said it was AI disease.
 
So now I get my labs and they are clearly abnormal, my blood cortisol was high and my urine cortisol was low, and my urine output for twenty four hours was only 600 ml, which if you know what a 100 ml syringe looks like, only six of them.  So maybe my blood cortisol is high because I can't clear it by urinating?  Sounds like a possibility.
 
Anyway, I go to the urologist and he feels its clearly an endo problem and possibly ai problem because there was clearly irritation that was not caused by infection.  He said there was no way I should only be going 600ml a day and gave me some more detrol and said to come back in a month and talk to the rheumy.  I think he is right, because there is no clear explanation why I can't produce urine and go properly and it improves with steroids, so that kind of explains it.
 
So I called the rheumie and pleaded for another 20mg taper which, probably due to the holidays, he finally agreed to give me.  After all these docs and copays, I still have no idea why I can't urinate, no one has ordered any more tests to find out why, and the endo won't do any tests to check my other hormone levels, which they are supposed to do, to see if there are problems there. 
 
Not being able to urinate is really affecting my sugar.  I'm really having trouble keeping it stable.  I'm disappointed with the endo, I expected more from her and I think my other docs did as well.  But she goes strictly by bloodwork and not at all by symptoms, even obvious physical ones.  I feel like I'm working up to being really sick from the urine problem because its starting to affect my bloodwork I think.  My cortisol is always low.  I'm eating beets and melons thanks to the tips here and maybe that will help.  I'm just depressed and almost scared to start the pred, but will feel better I know, esp. if it helps me go, but the endo really scared me. 
 
Well, at least I'll have a glimpse of my normal self during the holidays and hopefully have energy for turkey day to spend with family. 
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/17/2007 3:09 PM (GMT -7)   
I'm glad you got the prednisone taper, but sorry to hear about all the confusion with the new endo and still no answers to all of the problems you are having. Hang in there.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/17/2007 8:52 PM (GMT -7)   
Thanks, hippimom,
I haven't started it yet because I've not been feeling very well and my sugar's been all over, and I just want to get it steady before I start it. Besides, I might as well time it near thanksgiving anyway so I don't feel like a wet rag on that day. The doctors just don't understand how hard it is for patients to see glimpses of their former selves from time to time and not be able to sustain it. And how much we pay for these glimpses. And I've just lost patience with docs that lie. I think they should lose their licenses. I know my other endo would have been concerned and done something, even if it was to rerun the tests again later.

Oh well, more wasted money, more running the same tests over and over instead of running some different ones once in a while. They're supposed to be testing all my endo glands, but they only ever test my thyroid because of meds and my cortisol, because when my adrenals its like a last stage thing. I'm sorry, I'm just so disappointed. I thought she might be different. I may try an alternative doc, there is supposedly a good one. I'm a little afraid because of my liver and herbals are often unreliable but at this point, I don't have a lot of options. I've been to four endos and travelled up to 150 miles to go to them. Maybe I can go back to my old one and just pay her cash. It's like 150 dollars on top of what she takes from my medicare, which is over even the medicare 25% that I'm supposed to pay. I think this is illegal what she is doing, but who wants to fight with your doc. It's really sleazy, but she's good.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 11/17/2007 9:02 PM (GMT -7)   
Marji,
  Bless your heart! I hope one of your doctors can figure this out and get your cortisol numbers and urinating problem straightened out soon. I'm sure you are very frustrated with all that!
  I hope the prednisone taper will help you feel a bit better for the holidays. Please take care and keep us updated. You are in my thoughts and prayers.
                                                          Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 11/18/2007 1:34 PM (GMT -7)   
((( Marji ))). I'm sorry the results from that appt. were not what you were expecting. I know you were finally hoping for some answers. I know the prednisone will have you feeling better for the holidays, but I do hope they will continue testing to determine your urination problem. Take care and keep us updated,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 8mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/18/2007 8:34 PM (GMT -7)   
Well, today was the first day and I'm already better from the UT standpoint. My sugar is actually lower on the pred and off and more stable. I had some GI issues today, but that seems like it happens the first dayon because it sort of stimulates you. But my mood is much better so it was easier to handle, sort of. Also, I didn't take any pain meds today. My neck and back pain is so much better on the pred. And, I feel in control of my brain and my thoughts are clearer and better. So much for pred raising my sugar. Apparently the UT thing is one of the keys that is making me sicker, because now on the pred, my sugar is good and it should be the opposite. Also, I feel tired at night, no insomnia. Overall, much better. My liver or gut or pancreas or something really hurts pretty much constantly, but I don't want another scope and bx. It hurts. Well thanks for the support Babs and sharen. I know what makes things better, forget the bloodwork off the pred. It's not right when I don't clear through my kidneys right. Hopefully, I will be able to somehow communicate with my doc that I'm better on pred. I'm sure my cortisol is evening out because of the improvement. I thought about not doing the taper but taking one 5mg every other day and making it last sixty days, but I will do the taper, which is what the rheumie wants, though I think I could benefit from less even. But I guess the taper is important. The highest my sugar went was 147, but without any pred it was over 180 and down below 80 in one single day.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/18/2007 11:32 PM (GMT -7)   
Marji,

I'm so glad you are getting some relief. I know what you mean about wanting to use the pred sparingly over a longer period. I wondered if that would work too. But I've only taken a pred taper for poison ivy, many years ago and I never felt better in my life!! I dug all my flower beds that week and did a ton of yard work. I had never even heard of Lupus, but I suspect I had been dealing with it way back then. Now I've never asked for pred because I don't have organ involvement and I can't justify the potential side affects . . .but at times I'd really like to try it to see if I could feel better.

I'll be watching for your updates. I'm sorry you have so many issues to tangle with . . . A doctor does NOT have to accept Medicaid. The way I understand it, they have a choice of requiring full payment. The patient then decides if they will use that doctor or go to another.

I'll be watching for your updates.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/19/2007 8:57 AM (GMT -7)   
Marji,
I am so sorry this new doctor seems such an idgit. Do you have a good primary care doctor? Do you live withing a hundred miles or so of a univerity hospital? I traveled over 3 hours one way for a couple years trying to get help because the doctors were better at the university hospital. I dunno what to tell you except someone needs to order the full screen. Also consider seeing a nephrologist (kidney specialist) that might inspire the endo to try more tests. I would keep looking because 150 seems high for someone on a limited income. I wonder if your state has a program to cover the co-pays and deductables of medicare? A lot of states do. I take 10mg of pred now since I am off celebrex and ironically it looks like 10mg brought my blood pressure back into the normal range which just freaks me out because it indicates something is up. I see the rheumy tomorrow so I can ask her about it. It just isn't right that 10mg lowers my blood pressure while 5mg makes it higher. I am kinda worried. Dunno what to think.

I would even ask the rheumy to run the full screen on hormones at the next visit explaining that your new endo ignored abnormal results. Also ask about the urine output thing. It is serious when the body cannot dispose of waste properly. Trust me in this I had 2 family members die of kidney involvement. Watching them die was horrible. Stupid doctors didn't believe they were ill until it was way too late.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/19/2007 11:18 AM (GMT -7)   
Thanks Rosie, Redrose, I don't get medicaid, I get medicare, well really humana.

My doc wanted me to go to emery in atl which is 6 hours away. It would be good, but I couldn't do it in a day. We have a mayo at St. Lukes and I believe St. Lukes will take my insurance. That might be an option. I'm just getting to the point I would like to have some comprehensive care in a way.

I think whatever is wrong with me,like liver or something because that is a sign of advanced/advancing liver disease (water retention), maybe the extra pred is causing some kind of swelling to go down? Maybe for you too? I have still been in terrible upper and lower abdominal pain this time, but I'm still in the beginning of the taper. With my liver the way it is, if my kidneys go, I'm really sunk. They did a catscan but they said everything is normal. Everything is always normal, always until another scan at another place comes out abnormal, then they change there tune. One doc thought I may have a problem with my tubes coming out the kidney. That they might be rough and causing problems. I couldn't tolerate the med for it. I have detrol and that helps with night time sometimes but can't take it much. My stomach feels like a sore sack of nasty pills all the time. Need to changemy sig,not on all that anymore, just 6 or 8 meds.
Thanks you guys for always being there.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 02, 2016 7:33 PM (GMT -7)
There are a total of 2,731,919 posts in 300,977 threads.
View Active Threads


Who's Online
This forum has 151134 registered members. Please welcome our newest member, Linda Bee.
287 Guest(s), 14 Registered Member(s) are currently online.  Details
rowingmom, bluelyme, Helgramite, compiler, jennydancingfish, Xmaslover, Girlie, Tudpock18, Linda Bee, ks1905, poohcheez, Tall Allen, multifacetedme, LanieG


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer