I am torn here. I had thought about making copies of the more recent labs and an introduction letter with my symptoms and such and sending it to him before my appt. Than again, I know when some drs hear you have been to a slew of drs already they sort of pre diagnose you and not in a good way. I have my binder folder that I will take with me to the appt so he can see what they have already tested for but how much detail do I go into about my lack of dx despite so many dr's? Do I go in and let him see my desperation in finding out whats wrong or do I keep it in check, if I can? Right now, I just feel like crying and screaming for someone to hep me!
Am I making any sense at all??? I am really exhausted and can't think clearly and don't want to mess this appt up! Suggestions?
Why don't you try starting off slow. Take all that information WITH you, but don't overwhelm him with it. Start out with your basic symptoms, what YOU expect to be "cure" or "treated" (ie - I DONT want to be tired anymore, I dont want to be swollen, etc etc) And perhaps a small list of the more common things that you've been tested for and that have been ruled out. That way he doesn't go about wasting time re-testing you for the normal stuff. Feel him out and see if he's the kind of doc that WANTS to know all of this, or if he wants to try to play around himself. You may get lucky and he might just want to hear what all the other doctors have said, so that he has a better idea of what he's working with.
How's that sound?
Simply state that you have been tested for . . . and that those have all been ruled out. You can tell him you have copies of the labs if he needs them. Explain that it was recommended that you see an endocrinologist as many of your symptoms could be related to hormonal issues. Tell him you need a doctor who can look at everything as a whole and determine if there is a root cause, and you're hoping he is the type who can be a bit of a medical detective and figure this out, since no one else has been able to.
Perhaps if you appeal to his ego and give him the sense that he may be able solve something other doctors have not, he will take it on with enthusiasm and determination!
You should explain that in your journey to figure out what it is you do have, you were diagnosed with seronegative RA, and treated with humira and prednisone, which you are not taking now. He should know about those medications, in case they could have caused or aggravated problems with your endocrine system.
If you have photos of swelling in your hands or feet take them with you, so he can see how bad it does get.
I hope that you can find some answers finally, Michelle. It's about darn time, isn't it?
Michelle -
Coming from a history of 'freaked out-ed ness' upon diagnosis - I gotta agree with Katie here. In my search for a good doc I've found the best ones make decisions and ask questions right off the bat. If he's going to second everybody elses BS then he's not the one for you. If he 'thinks outside the box' you're going to know it - and not overwhelming him at first shows you are in control of the situation.
Hugs,
Pip
Dear Michelle, I don't think that I would send an introduction letter with labs, symptoms, etc. Chances are, he's not going to read it until he's walking into the room to be with you. I would probably not pull the binder full of medical information out to begin with either, nor would I go into negative experiences with previous doctors. I think I'd do what Hillhoney suggested. Go in with a list of symptoms and treatments tried. Let him know what they've ruled out. Let him know you have copies of all labs if he needs to see them. Ideally, if you're being referred from another doctor, they'd forward your medical file, including labs, right? So, he might already have all that. As sad as it is, some doctors pre-judge their patients. It is important to do everything in YOUR power to form a good relationship with him. Good luck and let us know how it goes! Love, JuliahHi, I guess the doctors I've had want to make their own decisions. I've come armed with tons of info, written letters explaining why I want to have them as my doctor and all sorts of 'stuff', but none of them read it???????
I changed heart doctors after an operation, and the new doctor didn't even ask why I was changing (I didn't volunteer), he spent 15 minutes with me and mostly read my RA doctor's report. I hope he had read about me on my chart before. Who knows? If i need a heart doctor I have a new one.
It is a mystery to me! Oh, well that's my experience. I'd go ahead and take what I want to with me and be prepared to answer questions. good luck with this, Lynda
Just remember this - specialists care about their specialty! Have everything with you, in case you need to refer to something, but the endocrinologist is going to have questions for you specific to his area of expertise.1) don't tell him what has been ruled out or previously checked for you want him to draw his own conclusions. If you tell him something was previously ruled out you are assuming the earlier doctor was correct. You want this guy to look at EVERY possibility
2) take any blood work done in the last 3 months any earlier than that has no current signifigence. don't worry if he repeats some tests you want current values and a freash perspective
3) list of symptoms in order of severity
4) he will have to know current diagnosis and medications but since the diagnosis doesn't cover all symptoms there is some dispute as to its accuracy. He also has to know what you have done with your medications recently so that he can eliminate problems caused by cold turkey of meds like prednisone
5) yes butter him up a bit..let him know that you know that it is the easy thing to say that you are a overweight depressed woman but you were told that he was willing to look beyond easy and think outside the box. Ley him know you are frustrated but other than that you MUST keep your emotions under control
6) TAKE SOMEONE WITH YOU!!!!! Michele you need an advocate that isn't emotionally involved with the situation so they can help ask questions
There is a book calleed How Doctor's Think by Dr Jerome Goopman that you might find helpful before your appointment. It allows you to learn the drs thought processes and how to present your information effectively
Good Luck
Great girls, thats exactly what I wanted to know!! I just couldn't figure out how to ask it right!Michele, if nothing else - DO NOT INCLUDE THE NAMES OF ANY PREVIOUS DOCTORS!!! Just make a list of what you have been tested for and the restults. It doesn't make a lick of difference WHO did the tests, just that they were done.
But I like Buckeyes idea of not even giving that out, just letting him start over so he can run the tests RIGHT.
Michele- I saw my new Rheumy a few weeks back and I didnt really say much when I went in apart from I was there due to a Dr /Patient relationship breakdown. We went through past meds and any problems but he decided that for him to gauge my problems he would start at the begining and run all the tests i already had in the past and a new set of xrays, we also went through my history( thats where the lymes disease theory popped up) As I was in great shape when i saw him he gave me another appointment for november unless my tests showed any problems or i was feeling bad. I have started a major flare 2 days ago so I phoned today and I have an apoointment for tomorrow.yay! He did tell me when I was there that rather than me tell him what all the other docs have diagnosed or decided I have or havent got, he would make his own diagnosis.
Good luck and keep us posted
Sorry to hear about your flare Lisa, I know you were just starting to feel well!Hey Michele, Just wanted to tell you good luck with this new Dr. Go with your gut instinct after you talk with him a few minutes. That might help you to decide what to tell him or what to give him. I will be praying this is the one you've been waiting on
Please let us know how it goes as soon as you can
I would give the receptionist a copy of your most recent labs when you get there so maybe he will glance at it before he comes in and a list of all current medications you are taking and then let the conversation evolve from there. Good luck and if you don't like him walk I had one Endo tell me after I decided to have thyroid surgery ( my thyroid was so large it looked like I had swallowed a plum ) that I had "better buy some turtle necks Honey thats going to leave one hell of a scar" well I never went back to him. When I needed to find a new endocrinologist after that I found out that they are one of the most limited specialist out there so if you find a good one hold on to him.
Good luck and take care
Linda from NJ
Thanks everyone. Its Friday, the boss is in and I am exhausted. I just can not concentrate. I bought that book last night and tried reading while laying on the couch but hubby had the tv on and it was distracting. So, I went and snuggled in bed and read the first 50 or so pages. I am really hoping that it helps me be more prepared for this next appt.Michelle,
You've already been given great advice from all that I can't really add to. I hope this is the doc for you. He's going to look at this from a different point of view because of his specialty and that may be just what you need.
Good luck, honey. I know this has been a long and frustrating road for you. I hope this is the guy to get things done and find some resolution and relief for you.
Hugs,
Steph
I have my fingers crossed for you. I like Hill Honey's advice alot. I also like appealing to his ego, that you have been searching for almost 3 years to get your health back. I also liked Hill Honeys advice. I would go armed with the binders, but not say a thing about it until he asks. I would probably look at him and say "I am sick and tired of being sick and tired! I hope you are the doctor I have been looking for!"