frustrated

LBlackman
LBlackman Member Posts: 113
in Thyroid Cancer #1
I traveled to SC, 320 miles to go to my endocrinologist for my five year scan. My previous scans have all been clear, but I was doing the atkins diet which I just found out may have given me false scan results. I did a low iodine diet against my Dr.'s orders to see if this one would be any different. My follow up appointment was scheduled with her PA without my knowledge. I have been asking questions about my labs (to the nurses since I am unable to get through to her by phone) and they have not been able to tell me what my TSH levels were in the past. Since joining these discussion boards I have alot of questions for my endocinologist. I have a rare form of thyroid cancer, hurthle cell. I really want to see my Dr. not her PA. I am sure the PA is good, although I saw her once and really wasn't happy with her, but I feel that if this is my final scan for five years, I want to hear it from my Dr. that I have seen in the past. I want her to answer my questions. Now to find out it will be a month and a half before she can see me. I have alot of issues going on and cannot wait that long for answers. I have requested a phone conference, or for someone to tell me my results and make the changes in Synthroid that I know they are going to make, then also give me a complete copy of my records and I will go to a Dr. in Florida. I have found one person who lives near me in FL that has hurthle cell cancer and I feel that if we see the same DR. maybe it will help them learn more about Hurthle Cell cancer. I am so frustrated right now. I am sitting on pins and needles awaiting another call from the nurse about my request. Although I have had the two nurses in that office tell me different things, like one telling me to stop the synthroid before my scan and the other telling me not to stop it...I am so confused and am beginning to think that they are confused as well.

Comments

  • sunnyaz
    sunnyaz Member Posts: 582
    #2
    Frustrated
    I'm sorry you are going through this Lynne. I know doctors can be very difficult. There just aren't enough good Endocrinologists to cover the vast amount of patients that need to be seen. I think that asking for the phone conference was a good idea. Make sure that message gets to the doctor that you are frustrated with the fact that they didn't tell you that would be seeing the PA instead of her. Maybe a change in doctors is a good idea, or at least a consultation with a new doctor to see where he/she is on HCC. You are right also about the nurses being confused. They have never been through this and are not educated about the process. You probably know more than they do at this point. Wish there was something I could say or do that would help, but you are in my thoughts and prayers. Hang in there and keep pushing for the answers you want and need.
    Blessings,
    Julie-SunnyAZ
  • LBlackman
    LBlackman Member Posts: 113
    #3
    sunnyaz said:

    Frustrated
    I'm sorry you are going through this Lynne. I know doctors can be very difficult. There just aren't enough good Endocrinologists to cover the vast amount of patients that need to be seen. I think that asking for the phone conference was a good idea. Make sure that message gets to the doctor that you are frustrated with the fact that they didn't tell you that would be seeing the PA instead of her. Maybe a change in doctors is a good idea, or at least a consultation with a new doctor to see where he/she is on HCC. You are right also about the nurses being confused. They have never been through this and are not educated about the process. You probably know more than they do at this point. Wish there was something I could say or do that would help, but you are in my thoughts and prayers. Hang in there and keep pushing for the answers you want and need.
    Blessings,
    Julie-SunnyAZ

    HCC
    Thanks Julie, you always have comforting words, I wish more nurses were like you!
  • nasher
    nasher Member Posts: 505 Member
    #4
    I can understand frustrated
    Trust me alot of us get frustrated.

    looking at my own info and my own scan results (Prior to the doc telling me) I knew I had a clean scan and all my bloodwork was good... but it took 6 hours of me waiting for the doc to have 5 min between paitents to see me to tell me this.

    The Endo I go to is about 50-60 miles out of my way cause the closer ones to me (that are covered by my insurance) are not that good with thyroid cancer.

    so this last week i drove the 1 hour+ each way for 4 days to get my thyrogen shots and trace dose and scan...

    there is literlay a Endo that is 5 min drive from my house but again he isn't good with thyroid... other endo issues suposidaly he is good at but not thyroid...

    I also understand your issue with the PA's. again the reason I like my Endo is every visit I will see a PA or a newer doctor and he/she will go through my info and come up with there recomendations... then they step out and tell the Doc... He then comes in and asks any other questions he has and answers the questions I have. So I deal with PA's every visit. The reason at least I know is that its a training hospital and evey one of there "Intresting Cases" they like to through all the trainies in on so they can see it...

    I hate being an "Inttresting Case Study".

    luckly for me being I do so much reserch on my own I get to play a game of stump the trainee with alot of my questions.

    Hopefully you get a good doc soon.

    Craig
  • sunnyaz
    sunnyaz Member Posts: 582
    #5
    nasher said:

    I can understand frustrated
    Trust me alot of us get frustrated.

    looking at my own info and my own scan results (Prior to the doc telling me) I knew I had a clean scan and all my bloodwork was good... but it took 6 hours of me waiting for the doc to have 5 min between paitents to see me to tell me this.

    The Endo I go to is about 50-60 miles out of my way cause the closer ones to me (that are covered by my insurance) are not that good with thyroid cancer.

    so this last week i drove the 1 hour+ each way for 4 days to get my thyrogen shots and trace dose and scan...

    there is literlay a Endo that is 5 min drive from my house but again he isn't good with thyroid... other endo issues suposidaly he is good at but not thyroid...

    I also understand your issue with the PA's. again the reason I like my Endo is every visit I will see a PA or a newer doctor and he/she will go through my info and come up with there recomendations... then they step out and tell the Doc... He then comes in and asks any other questions he has and answers the questions I have. So I deal with PA's every visit. The reason at least I know is that its a training hospital and evey one of there "Intresting Cases" they like to through all the trainies in on so they can see it...

    I hate being an "Inttresting Case Study".

    luckly for me being I do so much reserch on my own I get to play a game of stump the trainee with alot of my questions.

    Hopefully you get a good doc soon.

    Craig

    Oh, I love that game!
    Oh, I love that game! "Stump the trainee". It is so much fun to see the look on their face when you tell them that you have a B-RAF mutation gene and they act like they know what the heck you are talking about. First, it's the eye's wide open and you can see the gears moving right through their pupils. Next it's "well, I will have to check on that" response. Very few have actually admitted to not knowing what you are talking about.
    Blessings,
    Julie-SunnyAZ
  • amorriso
    amorriso Member Posts: 185
    #6
    sunnyaz said:

    Oh, I love that game!
    Oh, I love that game! "Stump the trainee". It is so much fun to see the look on their face when you tell them that you have a B-RAF mutation gene and they act like they know what the heck you are talking about. First, it's the eye's wide open and you can see the gears moving right through their pupils. Next it's "well, I will have to check on that" response. Very few have actually admitted to not knowing what you are talking about.
    Blessings,
    Julie-SunnyAZ

    With you
    You're postings have made me smile. I've just finished my second round of RAI, and am also in a teaching hospital. But to make things even more fun the doctors, nurses all speak Arabic, (I speak about 10 words of arabic) english is their second language. I've had numerous doctors take down my case history - its amusing to read some of them. The last report said I was single, did not smoke, but likes beer.

    On a more serious note, they didnt have my follow up to discuss my scan results etc scheduled until the end of july! I've had to be rather forceful and to some extent almost rude to get in earlier. I managed to get in to see my main doctor tomorrow - I think they'll be glad when I'm healthy again.

    Good luck with everything. I love the Stump the Trainee game!

    Andree
  • LBlackman
    LBlackman Member Posts: 113
    #7
    amorriso said:

    With you
    You're postings have made me smile. I've just finished my second round of RAI, and am also in a teaching hospital. But to make things even more fun the doctors, nurses all speak Arabic, (I speak about 10 words of arabic) english is their second language. I've had numerous doctors take down my case history - its amusing to read some of them. The last report said I was single, did not smoke, but likes beer.

    On a more serious note, they didnt have my follow up to discuss my scan results etc scheduled until the end of july! I've had to be rather forceful and to some extent almost rude to get in earlier. I managed to get in to see my main doctor tomorrow - I think they'll be glad when I'm healthy again.

    Good luck with everything. I love the Stump the Trainee game!

    Andree

    scan
    I love these posts, Andree they do make you smile....stump the intern, that's pretty good! I normally wouldn't mind seeing the PA, but I really don't care for her. This was supposed to be my last scan for five years if all came back clear. I can't get in to see my Dr. until August 1st and they won't tell me anything over the phone. It's very frustrating. I am sure she is going to change my synthroid dose and I would love to know the results from at least my bloodwork, but they refuse to discuss it until I come in there. I have requested that my records be sent to my primary doc in Florida. They were going to charge me $25.00 to take them to him....:(

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