Aa
Firing the endocrinologist
I've learned a valuable lesson this week....after realizing I had no idea what stage of thyroid cancer I had after being diagnosed months ago and still not being regulated properly on Synthroid after a total thryoid removal, I learned how important it is to have a good doctor. There are doctors who are good, but who only value the patient as a science project. This is the sort of doctor I had. He only understood lab tests and numbers. However, when it came to connecting with the patient, he was horrible. I never fully heard about the pathology report, my lab tests always seemed to have fallen by the wayside or got lost someplace, and it was exceptionally hard to get the guys attention to ask simple questions about TSH. He absolutely couldnt' explain it to me. Not to mention, after three months, I am still way off balance.
After reconsidering his niceness versus procedure, I decided, though I was very angry, that sometimes the doctor needs fired in order to move on to bigger and better things in life. After all, my life is not just numbers and synthroid levels, and I shouldn't have to keep giving blood once a month to get regulated after two months.
I agreed to see a better doctor here in town and feel much better about situation. I felt really bad at first, and even called to apologize, but decided to move on.
When you are diagnosed with Cancer, you are never the same person again, a truth I learned this week.
You really have to bother people to get what you want and to make sure lab tests don't get lost someplace, or even to get truthful answers. If you don't get what you need from one doctor, drop him immediately and go to a different doctor.
After reconsidering his niceness versus procedure, I decided, though I was very angry, that sometimes the doctor needs fired in order to move on to bigger and better things in life. After all, my life is not just numbers and synthroid levels, and I shouldn't have to keep giving blood once a month to get regulated after two months.
I agreed to see a better doctor here in town and feel much better about situation. I felt really bad at first, and even called to apologize, but decided to move on.
When you are diagnosed with Cancer, you are never the same person again, a truth I learned this week.
You really have to bother people to get what you want and to make sure lab tests don't get lost someplace, or even to get truthful answers. If you don't get what you need from one doctor, drop him immediately and go to a different doctor.
Good Luck on everything and hopefully you will post back with great results.
I had to dig my way through all my records to uncover the real answers to why I was so ill. For me - it didn't matter if they made a million dollars on me anymore - I just wanted to get well no matter what. Then finding a doctor who sat with me and took care of what I needed was wonderful and I had a peace of mind that I now understood I would be heading in the right direction.
Many are in the same shoes I was in and hope to find a doctor that will take the case and fix them and won't have to rely on knowing a ton of research that is out there.
Many also find that this doesn't come as easy.
Glad to hear you found some head way in your case.
I had to dig my way through all my records to uncover the real answers to why I was so ill. For me - it didn't matter if they made a million dollars on me anymore - I just wanted to get well no matter what. Then finding a doctor who sat with me and took care of what I needed was wonderful and I had a peace of mind that I now understood I would be heading in the right direction.
Many are in the same shoes I was in and hope to find a doctor that will take the case and fix them and won't have to rely on knowing a ton of research that is out there.
Many also find that this doesn't come as easy.
Glad to hear you found some head way in your case.
I am so sorry you endured this absolute nigtmare and now so relieved to hear you will be treated with respect at the new Doctor. This amazes me to hear stories like this ...
C~
C~
It is good to be educated, but the thing is, if you are paying a doctor, or your insurance is paying a doctor three hundred to two hundred dollars a visit, and that doctor can't even give you lab results, something isn't right. I kept asking for lab results and explanations. The nurse kept telling me she couldn't tell me anything and the doctor wouldn't tell me. He was too busy typing information into a laptop everytime, which is strange, what was he typing and shouldn't he have been talking to me instead about what was being typed?
He was just too weird anyways and he obviously had no people skills, which is the case with most doctors i am finding. Book smart a lot of times lack in street skills, which would include a lot of doctors.
I am confident I made the right choice. I had blood drawn yesturday and my lab results will come to me in the mail as well as the doctor, which is the way it should have been. I should have been getting copies of the labs all along, and I never seen any of them! Also, I have an appointment on Friday to discuss these results, which is the way it should have been. The old, a nurse would call me with a change of synthroid level perscription, but would never have a good enough explanation of why.
Its amazing how different this new place is in comparison to my old place and now i understand why this place gets such national recoginiton as being the best hospital.
As to the records, I know the next step and easily obtained the pathology report, which is truely the only record important in this case. It's amazing that I was never given a copy of this even though I asked for it several times. I had to get it from the hospital because the endo guy wouldn't give it to me. Weird. I can care less what any of the rest of it say as this endocrinologist has proven to be incompitent and i was not confident under his care for probably two and a half months.
He was just too weird anyways and he obviously had no people skills, which is the case with most doctors i am finding. Book smart a lot of times lack in street skills, which would include a lot of doctors.
I am confident I made the right choice. I had blood drawn yesturday and my lab results will come to me in the mail as well as the doctor, which is the way it should have been. I should have been getting copies of the labs all along, and I never seen any of them! Also, I have an appointment on Friday to discuss these results, which is the way it should have been. The old, a nurse would call me with a change of synthroid level perscription, but would never have a good enough explanation of why.
Its amazing how different this new place is in comparison to my old place and now i understand why this place gets such national recoginiton as being the best hospital.
As to the records, I know the next step and easily obtained the pathology report, which is truely the only record important in this case. It's amazing that I was never given a copy of this even though I asked for it several times. I had to get it from the hospital because the endo guy wouldn't give it to me. Weird. I can care less what any of the rest of it say as this endocrinologist has proven to be incompitent and i was not confident under his care for probably two and a half months.
I have not been Dx with cancer of the thyroid but lost it to Graves in 2003 by RAI.
I agree with you on the firing of doctors when the there is isn't an answer coming your way.
BUT please make sure the following are done to help you move on in a new search for a physician.
Get your records before firing this doctor! All of them. Sometimes things are lost in the shuffle and you need you history.
Be your health advocant or get a family member involved with your situation. You ahve to know what you are talking about to establish a solid relationship with that new doctor.
I am hearing from my doctor now that so many paitients - like me - had to almost get their degree in thyroids to finally find answers they sought out for years. Know your labs - and research pertaining to your condition and be confident enough to have a intelligent conversation with that new doctor on your treatment options available to conquer those symptoms and in your cause a reoccurance.
A good doctor - will not object to internet information and the ones open to that - are the ones who are very helpful in finding optimal proformance for the patient. In fact - those doctors will understand you have an interest in your health and encourage you to read information on how to help yourself.
I didn't believe that until I went to my doctor last week and talked with her for almost 3 hrs. She commended me on my learning and opened up so much more for me to read - I feel overwhelmed at this time in all the things she asked me to search out.
She gave me websites to read too.
If you do not become committed to your health to a degree on your own and flop from one doc to the next - a sprial of rollarcoster treatments could be in your future and you will never understand what will keep you cancer free and well.
That happened to me for years until I took so much responsibility of my own health on my own and know I feel much more confident I am getting the right care I need to feel well.
I agree with you on the firing of doctors when the there is isn't an answer coming your way.
BUT please make sure the following are done to help you move on in a new search for a physician.
Get your records before firing this doctor! All of them. Sometimes things are lost in the shuffle and you need you history.
Be your health advocant or get a family member involved with your situation. You ahve to know what you are talking about to establish a solid relationship with that new doctor.
I am hearing from my doctor now that so many paitients - like me - had to almost get their degree in thyroids to finally find answers they sought out for years. Know your labs - and research pertaining to your condition and be confident enough to have a intelligent conversation with that new doctor on your treatment options available to conquer those symptoms and in your cause a reoccurance.
A good doctor - will not object to internet information and the ones open to that - are the ones who are very helpful in finding optimal proformance for the patient. In fact - those doctors will understand you have an interest in your health and encourage you to read information on how to help yourself.
I didn't believe that until I went to my doctor last week and talked with her for almost 3 hrs. She commended me on my learning and opened up so much more for me to read - I feel overwhelmed at this time in all the things she asked me to search out.
She gave me websites to read too.
If you do not become committed to your health to a degree on your own and flop from one doc to the next - a sprial of rollarcoster treatments could be in your future and you will never understand what will keep you cancer free and well.
That happened to me for years until I took so much responsibility of my own health on my own and know I feel much more confident I am getting the right care I need to feel well.
Unfortunately, that is me ... I cannot go below 1.3 and even 1.3 causes quality of life BUT my cancer was small, very small, fully encapsulated and no lymph node involvement and my thyroglobulins are fine and we have ultrasound done ev. 6 mos to check for the other side with a tiny 4.0mm stable nodule that is still intact.
My old Endo said <2.0 is good given my type of cancer. My new endo said as close to 1.0 as possible and I really should try to keep it below 1.5 so now we are dosing 75mcgs and 50mcgs ev. other day and will retest in 4 weeks.
It's a delicate balance and having the right doctor who *listens* and doesn't go 100% by the textbook .. can quote from the book, but let's you have a conversation about it.
C~
My old Endo said <2.0 is good given my type of cancer. My new endo said as close to 1.0 as possible and I really should try to keep it below 1.5 so now we are dosing 75mcgs and 50mcgs ev. other day and will retest in 4 weeks.
It's a delicate balance and having the right doctor who *listens* and doesn't go 100% by the textbook .. can quote from the book, but let's you have a conversation about it.
C~
Thyroid cancer patients target TSH should be between .1 and .5, being on the lower end if you are higher risk and the higher end if you are low risk. There are those patients, though, who have quality of life issues with their TSH being so low (hyperthyroid symptoms) and choose to weigh that against their chances of recurrence and, perhaps, choose to keep their TSH a little higher than recommended.
Take care,
Amy
Papillary Thyroid Cancer
First diagnosed 1985
Recurrence and still fighting 2008-2009
Take care,
Amy
Papillary Thyroid Cancer
First diagnosed 1985
Recurrence and still fighting 2008-2009
and does anyone know what the normal tsh levels are suppose to be for thyroid cancer patients? i was not ever able to get this simple question answered by my previous endo guy....
wow, i can't believe that! yeah i had a tt several months ago, just before christmas. the endo has never suggested or even mentioned body scans to me, and i know it's standard procedure to get them done. also, he never discussed lab results with me, so i have no idea what tsh level i am suppose to be at or anything! the more i am finding out the better off i am of having to leave that endo guy. he was nice, but he specialized more in diabetes than he is thyroid cancer. when he did the fna, he assured me that no one my age ever has cancer in the end, and i ended up with cancer. lie number one he told me. then after my surgery, he told me the levothyroine i was on was not causing the heart palpations, but when i stopped the medication, so did the heart palpations. lie number 2. then he told me he would go over the lab results and show me where i am suppose to be with Tsh. here it is three months later, and i am still feeling bad and have no clue what the goal was suppose to be. lie number 3. then he told me there would be no long lasting effects of the surgery and treatments...lie number 4. he kept me in the dark all the time and his nurse was pretty useless when it came to explaining things. i told him i was depressed and needed medication, he sent me to a psychiatrist. i should have walked out at that point....but just didn't know any better.
my new endo man is well known around town and works at the best hospital in middle tennessee. he is recommended by a lot of cancer patients and deals mainly with thryoid cancer. i can't wait to get started and actually be able to have confidence in the doctor. i want to feel normal and not sick anymore. i feel like i have a low grade flu thing all the time, joint aches, headaches, fatique, no energy at all, and everytime i would tell the endo, he said it wasn't my TSH...the thing is, he would raise my synthoid levels.
When i told him i didnt want anymore treatment, the first thing that came out of his mouth was that i needed to get to my regular physician and have my blood levels checked...i think that was his job several months ago? i just don't get it. he could have referred me to someone who deals with thyroid cancer instead of lying so much about it.
ok, i am off my soap box, i wanted to let people know the story so they are aware of these docs. there are apparently two types of endo people, those who deal with thyroids and glands, and then those who deal with diabetes.
my new endo man is well known around town and works at the best hospital in middle tennessee. he is recommended by a lot of cancer patients and deals mainly with thryoid cancer. i can't wait to get started and actually be able to have confidence in the doctor. i want to feel normal and not sick anymore. i feel like i have a low grade flu thing all the time, joint aches, headaches, fatique, no energy at all, and everytime i would tell the endo, he said it wasn't my TSH...the thing is, he would raise my synthoid levels.
When i told him i didnt want anymore treatment, the first thing that came out of his mouth was that i needed to get to my regular physician and have my blood levels checked...i think that was his job several months ago? i just don't get it. he could have referred me to someone who deals with thyroid cancer instead of lying so much about it.
ok, i am off my soap box, i wanted to let people know the story so they are aware of these docs. there are apparently two types of endo people, those who deal with thyroids and glands, and then those who deal with diabetes.
Hi, the Endocrinologist is the key to battling thyroid cancer because they act as your oncologist. Many endocrinologist are good for diabetes but not cancer. You didn't say if you had a TT. I assume you did since you are on synthroid. After my TT, radiation, and the body scans I had an usual uptake in the shoulder. My endo said let's wait a year and see what happens. Found a new endo who only takes thyroid cancer patients. She order an MRI and thyroid scans. She found a new 1/2 inch tumor in the thyroid bed that tested positive for cancer and this was 2 months after the radiation and the first endo saying let's wait a year. I just had the tumr removed by a new surgeon who performs may of these operations versus the first surgeon who wasn't familiar with the type of cancer I have. The second thing I wanted to tell you was, the first hospital I went to diagnosed me as papillary cancer. My new endo works out of a different hospital and had me send over the pathology slides. The second hospital diagnosed me as papillary cancer with a tall cell variant. This is much more agressive and uncommon but many pathologist don't recognize it and pass it off as papillary. The difference is big. The tall cell variant doesn't react as well with the radiation iodine uptakes hence my new tumor within two months. I can't express enough to you don't walk to a new endo run. My brother in-law is a doctor and he asked around what doctor would you go to if you had thyroid cancer. Ask around and best wishes and good luck.
Michelle
Michelle
I've fired more than one doc ...............you are the most important asset to yourself and knowledge is power ... this is awesome to hear!!!!!
You are right ..................a diagnosis of Cancer changes you forever and it can be for the better.
C~
You are right ..................a diagnosis of Cancer changes you forever and it can be for the better.
C~
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