In A Quandry...

[firewatcher]

As many of you know, I am caught between two battling physicians (endos) both are so convinced that they are correct that neither will order the test to confirm their diagnosis (diabetes insipidus and possible pituitary decline/failure.)

I was about to ditch Dr. Miney who thinks it is all a thyroid thing and POTS in favor of Dr. Meany who thinks its a pituitary thing. After searching around and getting some good advice from another forum member, I've researched elevated serum creatinine/low GFR and thyroid conditions (I do have positive anti-thyroid anti-body titers.) Gee, Dr. Miney doesn't look as off on his dx anymore...hypothyroidism WILL elevate serum creatinine and reduce kidney function (GFR.) However, if the pituitary is going, as Dr. Meany suggests then the thyroid testing (TSH) will come back as low or normal (which it has, and why HE is saying that it is NOT thyroid! )

IF I am hypothyroid AND the pituitary is "going" then I also risk permanent kidney damage due to lack of treatment. They BOTH could be right!

Here's the quandry: It could all also be normal and I just have high serum creatinine and the "formula" to estimate GFR is incorrect for me.

Do I ask and risk looking like a hypochondriac? Do I wait and bring it up at my next appointment in May? Do I do an end run and go ask the nephrologist?

I am sooooooooooo sick of doctors' appointments.........I am soooooooooooooo sick of testing that shows nothing that is far enough out of whack to prove anything!

I have this niggling doubt in the back of my mind (thank you previous doctors) that alternately tells me that I am blowing things out of proportion and then "remember the last time a doctor told you he did not have to test you because you obviously had _______ you were treated for something that you didn't have for 12 years!"

I hate to waste my time, their time and subject myself to coming of meds that are helping and uncomfortable testing.

Advice?

[pat57]

I would talk to my primary Dr.

[turtlefairy5]

I have no idea but I hope you get this figured out soon and get some peace about it.

Amber

[Miriam Poorman-Knox]

My vote is PCP.......

[Sunfish]

yep, talking to/ with your PCP to get his or her take would be my first vote as well.....generally speaking. that said, though, i can't recall first hand what your situation is in that realm (aka what your access to &/or relationship with your PCP is like) so don't know if that suggestion makes sense for you? if it's feasible i'd definitely go for having that conversation first....

good luck!

melissa

[all4family]

I am so sorry you are going through this. I had trouble with just a dicision on one doctor, so I can't imagine what you are going through. I wish I had some good advice, but to be quite honest you lost me!!! Maybe you should consider that medical degree idea!!! I would say if they both could be right, and you like some things about going to both of them can you still see them both, and possibly explore both posibilities? Maybe not just going down one path? I know what you mean about the testing to. It just becomes exhausting!

If it makes you feel any better if you get called a hypochondriac enough you just learn to ignore it!

I hope you find some answers, that will comfort you and reassure you, you re going in the right direction.

Hugs

Suzy

[EarthMother]

I'll chime in for the suggestions already made that you should talk with your PCP and consider getting that medical degree (in your copious free time :-)

It has been my personal experience that some of these rare, strange, multivariant disorders can look like red herrings if we test during a relatively dry spell. My therapist (also an RN) would tell me that though she believed there was something organic going on to cause my symptoms, that unfortunately I was likely going to have to wait until things progressed before the medical tests would be able to decipher what that was. So in my case, I tend to test when my symptoms are at a peak or have changed in some substantial way. Timing and testing seems worth considering.

[jump]

I would STRONGLY recommend that you risk looking like a hypochondriac and pursue this to its end, whether with your PCP or with Miney and Meany, or with all three. And I would recommend not waiting until May either, if you think you can see your PCP sooner.

As I know I've mentioned here, I wrestle a lot with the whole "but they'll think I'm blowing things out of proportion" debate. I hemmed and hawed for MONTHS with trying to figure out what was causing wacky insulin levels - was it thyroid? was it my diet? was it POTS? etc. My doctor kept saying, Well, why don't you try this, and if it doesn't work, come back in a few months. Finally I got up the courage to ask for every test under the sun and it turns out the whole problem was a simple vitamin deficiency. I could have been feeling better sooner if I had been less afraid of looking like a hypochondriac. And you know what? When I finally put my foot down and asked for a bunch of tests, my usually-judgmental PCP didn't judge me at all. Especially when they came back "off."

Similarly, I've been doing the specialist-merry-go-round to try and get to the bottom of my chest/lung pain. I asked for every test, got it, and it all came back inconclusive and essentially I'm no closer to figuring out what's wrong than I was a few months ago. But I'm STILL glad I went through the trouble of all those tests, because now I've ruled out a lot of things, and it's easier for me to just accept that this is "something fluky" but not serious. You might get lots of tests and determine that your body is just different from the norm and there isn't an explanation for your abnormal labs and the GFR isn't calculated right for you -- but if this ends up being the case, at least you'll *know,* or if you don't know for certain you'll at least know it's the most logical conclusion, whereas now you don't know which conclusion makes the most sense. Oh, and also, even when all my pulmonary tests came back normal, my doctors STILL didn't think I was a hypochondriac. Or at least, they didn't tell me so to my face, and if they maybe suggested I am "too sensitive" to pain or something, I can say to myself "Well, they don't know what this feels like every day, and if they did they'd feel like jerks for implying it's all in my head." You can't let doctors' lack of empathy affect whether or not you get the care you need. Or at least, you have to try your hardest not to.

Doctor's appointments are a big pain, and it's a big pain when you go through the trouble and the expense and they don't tell you anything for certain, but it's also a big pain to sit around not really knowing what's wrong and worrying it might be something serious you should be treating, or worrying the treatment you're taking isn't necessary. With more information - more tests, etc - you'll at least have something to help make all this murkiness a little clearer.

Plus, it's kind of unreasonable for them to assume you're going to accept their diagnosis without testing. If they think you have something and there's a test for it out there, even if it's an imperfect test, they should be offering it to you. It's definitely not unreasonable as the patient to expect that. Maybe these are tests your PCP can order, and then once you have the results you'll have a better sense of whom to consult and work with?

Also, in my case with the vitamin deficiency, I had a test in November that came back normal -- turns out it was a "low normal" but I didn't know that at the time. When I asked for more testing to try and get to the bottom of my insulin problems and even-more-extreme-than-usual fatigue, my PCP originally said "Well, but I just tested you for that and it was fine." Somehow I convinced her to run the test, and now, only five months later, it was way off. The "low normal" turned out to be a "on the way down to abnormal," we just didn't know it without the second test. If it's been a few months since you had certain tests, don't be afraid to ask for them again -- a "low normal" could have been your body on it's way to abnormal, instead of a constant level, you know?

Anyway, good luck, and pound away at those "they'll-think-I'm-a-hypochrondriac" fears! You know something doesn't feel right, and if it takes a long time to figure out why, so be it. It doesn't make you a hypochondriac, it just makes you complicated. Which we all are around here, so don't feel bad about it!

[masumeh]

i say push for confirmation tests. I was also misdiagnosed by doctors who were so sure of the Dx, they "Didn't even need to test!" Later tests proved their DX wrong. Since then, I've caught several doctors in the midst of unfounded, incorrect diagnosis, including one who tried to misdiagnose my daughter in the ER while she was in a comma. They rattle their jargon off, then I say, "Is that what the blood tests indicate?" Then they give some excuse, then I say, "But you're going to conduct blood tests to confirm that, of course, aren't you?"

Problem comes when there is no sure fire test to confirm the DX.

Oh, my sister-in-law missed some menses, and an endo actually misdiagnosed her with anterior pituitary tumor--without an MRI! She was ready to dish out the medication and everything. My sister-in-law had the sense to seek a second opinion, and that doctor suspected VD deficiency, conducted an MRI to confirm no tumor, and blood test to confirm VD def. (hers was 8, normal is 35-60). We were all so mad at the first endo. She didn't even explain that AP tumor is not going to kill her. She just said "brain tumor" and make my sister freak herself sick. Some doctors are really nuts!

[firewatcher]

Thank you all, sometimes I just need some encouragement to do what is uncomfortable. I went for 12 years with a misdiagnosis and "aggressive treatment" of asthma, which I don't have. I'll always remember the doctor saying "I don't even have to test you, you have asthma." It was after a POTS/exercise episode exactly like my cardiac stress test---my HR was 180 just walking on my stress test and before my asthma misdiagnosis I had tried to run and nearly blacked out. My PCP is good about all this, it is just that since I began seeing him a year ago, I have yet to see him as a "sick" patient. I was offered the correct tests at Vandy (for diabetes insipidus) but did not do them there because I thought "IF Vandy says I've got it, then surely the doctors will test to confirm........" No doctor has ever thought my elevated hematocrit or creatinine were normal, but since they could not find and answer, they said it was "normal for you."

Thank you for the advice and encouragement! I will let you know how it goes.

[mjan]

AAAAHHHH... the medical field. You DO know that MD=medical deity??

ANyway.. yes MDs can be under or overly aggressive..or dismiss you as we all may know. But they hate NOT KNOWING !! They want some test to tell them YES YOU ARE CORRECT!!

I always liked anyone who says, "I don't know"..but helps you find out.

Have these 2 docs communicated with each other??

If if were me...I would go to my guru of a nutritionist. He specializes in this kind of eval that uses your Autonomic response to indicate or guide him to where you may be toxic..deficient..and builds up your systems..and WHALLA... no more DX or symptoms. His eval is so specialized and amazing that 2 neuros and their PA saw the difference and tell me to return to him when I have a flare.

Now seeing him does not necessarily CURE me.. and his nutritional treatment is looking at allergins in my diet...like WHOLE WHEAT and SOY.. thought to be good foods. His nutiritional program is developed and organically grown HERE on a farm near by. Because its whole foods ground into tablet or capsule form it does NOT interfere with other meds. He also tests the meds to see what damage they can be doing and gives you something to counteract that damage while you MUST take them. He cannot and will not diagnose..or stop treatment..but can correct a lot of unhealthy problems.

Perhaps you need a 3rd opinion. Do you like and trust your PCP? Mine is awesome..my last 3 were..all women who dont stop until they know.

Best to you...I hear ya with the NO MORE DOCS and appts. ..not to mention the co pays for ALL the tests etc.

Jan