Looking for Endocrinologist with special interest/experience with treating Graves Disease

[Mary413584]

I have about reached the end of that proverbial rope looking for a doctor with special interest in and experience in treating patients with Graves Disease.  I was diagnosed a few years ago and have been going downhill since.  Have just "fired" my endocrinologist--for a multliple of reasons.
Would appreciate any info on finding an endocrinologist in the upstate NY (Utica, Syracuse, Cooperstown) area...one who will monitor my medications regularly, one who will "listen" and will take time to explain various treatment options.  I know there are other treatment methods available other than a rush to the surgeon's knife and that especially with Graves Disease--that there is no "one size fits all" treatment.  My GP has been zero help in recommending an endocrinologist.......keeps mentioning ones "good for diabetes problems".  Of course I know that all endocrinolotists treat diabetes......but--I do not suffer from diabetes and need more of a specialist in Graves.  In a net search, I found two endocrinologists in North Carolina who specialize in the treatment of Graves Disease---but that does not help me here in upstate NY.....Meanwhile, I'll keep searching the web....Thanks!

[JessKies]

Did you ever find a doctor? I need to find one in the midwest... or I'll travel to the east or west coast to give me another option that RAI.
I am allergic to the methimaxole.. and haven't tried the other RX, because they said if I'm allergic to one, I'll most likely be allergic to the other.

Is there really NO OTHER OPTION?!

Thank you.
Jessie

[Mary413584]

PS--Just had the following tests done via my primary physician):

--24 iodine
--TSh level, Free T3, FreeT4
---PTH serum calcium  (parathyroid)
---antibody testing:
---Thyroid peroxidase antibodies(TPOab)
---Thyroidglobulin antibodies (TGab)--to check for autoimmune throid disease)


--Awaiting results......

------------------------------------------------------------------------------------------------------------------------------

ARMYWIFE92



Thank you very much for your response.  In retrospect, some blame I place on myself for not researching  on my own--- thyroid problems in general and Graves Disease in particular.  I just went along with the endocrinologist, not looking into his education, etc.  the "problem" with the left lobe of my thyroid was discovered "by accident" after undergoing some ulta sound for another issue.  My GP's office called me, I had the data sent to my endocrinologist (now fired--still doing research to find another).  My endo called me in for a biopsy last July... came back negative, but I have learned that 1 %   of cancers can be missed.   I can't detect any lump on my neck, my eyes don't bulge out, no neck discomfort, no swallowing difficulty, no trenmbling. Anyway, endo said to "call my office in July and we'll set you up with a surgeon." (that's a lot of minths--so, no emergency) At the end of this past February for what I thought was to be a consult with an ENT surgeon--I went only to have him write GOITER on the cover of my chart, had his surgical nurse set me up for pre-op procedures in three days, surgery a couple of days after that.. on March 5th.  The surgeon did not look at the MRI I brought in, "interviewed me for all of three minutes..... Whew!  I went home, wrote up a few questions and headed for my endo's ofice.  I told the receptionist that I had a note for the doc with some questions on it, stated the date of the surgery and that maybe the doctor could get back to me about my questions.  I didn't have an appointment and didn't intend to see the doc right then.  Mainly, I wanted to know what I might expect after surgery and what might happen if I didn't go forward and what would be alternate methods of proceeding.  Well---a big, bruising "nurse"  (I had been coming to this office for over 12 years and never saw this individual before) said: "I'm Doctor's nurse, let me have a look at that (my note)"..She glanced at what I had written and said: " Doctor can't answer these, you don't have an appointment!"  She was VERY loud.  People in waiting room could easily hear.  I asked if we could step behind the door for some privacy---she replied even louder:  "NO, you don't have an appointment!"  At that point, I saw the endo enter  in back of the room, I know he heard the commotion, but I don't believe he saw me.  After a few seconds he disappeared.  The "nurse"--who couldn't have been more than 20 years old had really intimidated  and embarrased me. Mentioning that I had been a patient here for a long time, I asked how I could have my records transferred elsewhere.  She said:  "Just sign a note saying where you want them sent."  I left the office...very shaken, drove right to the surgeon's office, explained the "problem" with the surgical nurse and told her that I wanted the surgery postponed for the time being.

What I have been wondering for some time (not being able to get any answers from various specialists...perhaps they don't know the answers to the puzzle)--is that I wonder if the thyroid could be implicated in autoimmune diseases with which I have been diagnosed over the past dozen or so years  (prior to that--have always been very healthy).  I just turned 68.  Here's the list:  collagenous colitis (have a regular gasto doc)' many kidney stones since birth of the first of my three children  (possible link to parathyroid which regulates calciuum..?)..all my stones are calcium oxylate..six small stones are currently in my left kidney....go to Urologist every 6 months, undergo a KUB each time to monitor position etc. of stones---and undergoing lithrotripsies from time to time.  Then there's the Rosacea,  the high blood pressure  (no one in my family has suffers/ed from hypertension),the muscle/bone aches, the  episodes (infrequent and lasting only a couple of minutes) of blurred vision, numbness around mouth,etc.,  Neurologist said to take a baby aspirin a day "in case it's TIAs".....and so it goes.  We see these individual specialists, but not a one seems to be willing or able to put the pieces together.  I had hoped to get some answers out of the now former endocrinologist...hope dashed.  I faxed from my primary's office to have my endocrinologist's records sent to my primary's. Search for new endocrinologist and my online reasearch continues........ordering some books, just bought Dr. Rubin's Thyroid for Dummies......looking into some by Shomon, Brownstein, Moore etc.  Gheesz, this thyroid business is SO complicated...and there is so much that is not yet known.......

The former Endo did dose (methimazole) by tsh, T3 and T4--for about 6 months....several years ago.  Then stopped it saying that if I took the drug for too long, that I'd become hypo.      Despite My telling him about symptoms the past few years..., fell on deaf ears.  Again, Should have done my own homework...that was many years ago.  I'm going to look up the "block and replace method" you mention---heard the term for the first time...from you!  He never mentioned "iodine".     Again, thanks for responding...

[Mary413584]

Thank you very much for your response.  In retrospect, some blame I place on myself for not researching  on my own--- thyroid problems in general and Graves Disease in particular.  I just went along with the endocrinologist, not looking into his education, etc.  the "problem" with the left lobe of my thyroid was discovered "by accident" after undergoing some ulta sound for another issue.  My GP's office called me, I had the data sent to my endocrinologist (now fired--still doing research to find another).  My endo called me in for a biopsy last July... came back negative, but I have learned that 1 %   of cancers can be missed.   I can't detect any lump on my neck, my eyes don't bulge out, no neck discomfort, no swallowing difficulty, no trenmbling. Anyway, endo said to "call my office in July and we'll set you up with a surgeon." (that's a lot of minths--so, no emergency) At the end of this past February for what I thought was to be a consult with an ENT surgeon--I went only to have him write GOITER on the cover of my chart, had his surgical nurse set me up for pre-op procedures in three days, surgery a couple of days after that.. on March 5th.  The surgeon did not look at the MRI I brought in, "interviewed me for all of three minutes..... Whew!  I went home, wrote up a few questions and headed for my endo's ofice.  I told the receptionist that I had a note for the doc with some questions on it, stated the date of the surgery and that maybe the doctor could get back to me about my questions.  I didn't have an appointment and didn't intend to see the doc right then.  Mainly, I wanted to know what I might expect after surgery and what might happen if I didn't go forward and what would be alternate methods of proceeding.  Well---a big, bruising "nurse"  (I had been coming to this office for over 12 years and never saw this individual before) said: "I'm Doctor's nurse, let me have a look at that (my note)"..She glanced at what I had written and said: " Doctor can't answer these, you don't have an appointment!"  She was VERY loud.  People in waiting room could easily hear.  I asked if we could step behind the door for some privacy---she replied even louder:  "NO, you don't have an appointment!"  At that point, I saw the endo enter  in back of the room, I know he heard the commotion, but I don't believe he saw me.  After a few seconds he disappeared.  The "nurse"--who couldn't have been more than 20 years old had really intimidated  and embarrased me. Mentioning that I had been a patient here for a long time, I asked how I could have my records transferred elsewhere.  She said:  "Just sign a note saying where you want them sent."  I left the office...very shaken, drove right to the surgeon's office, explained the "problem" with the surgical nurse and told her that I wanted the surgery postponed for the time being.

What I have been wondering for some time (not being able to get any answers from various specialists...perhaps they don't know the answers to the puzzle)--is that I wonder if the thyroid could be implicated in autoimmune diseases with which I have been diagnosed over the past dozen or so years  (prior to that--have always been very healthy).  I just turned 68.  Here's the list:  collagenous colitis (have a regular gasto doc)' many kidney stones since birth of the first of my three children  (possible link to parathyroid which regulates calciuum..?)..all my stones are calcium oxylate..six small stones are currently in my left kidney....go to Urologist every 6 months, undergo a KUB each time to monitor position etc. of stones---and undergoing lithrotripsies from time to time.  Then there's the Rosacea,  the high blood pressure  (no one in my family has suffers/ed from hypertension),the muscle/bone aches, the  episodes (infrequent and lasting only a couple of minutes) of blurred vision, numbness around mouth,etc.,  Neurologist said to take a baby aspirin a day "in case it's TIAs".....and so it goes.  We see these individual specialists, but not a one seems to be willing or able to put the pieces together.  I had hoped to get some answers out of the now former endocrinologist...hope dashed.  I faxed from my primary's office to have my endocrinologist's records sent to my primary's. Search for new endocrinologist and my online reasearch continues........ordering some books, just bought Dr. Rubin's Thyroid for Dummies......looking into some by Shomon, Brownstein, Moore etc.  Gheesz, this thyroid business is SO complicated...and there is so much that is not yet known.......

The former Endo did dose (methimazole) by tsh, T3 and T4--for about 6 months....several years ago.  Then stopped it saying that if I took the drug for too long, that I'd become hypo.      Despite My telling him about symptoms the past few years..., fell on deaf ears.  Again, Should have done my own homework...that was many years ago.  I'm going to look up the "block and replace method" you mention---heard the term for the first time...from you!  He never mentioned "iodine".     Again, thanks for responding...

[armywife92]

Can you share what problems you are having? Many of us have gone through countless endo's just to find that ''right'' one who is intuitive to our unique situation. The best advice I can give you is go to the endo's website and read their ''reviews'' section. I've done this with both my son and I, and have picked winners. Of course my first endo I didn't do the research until I was under his care, and the majority of his reviews were thumbs down. You can also call the office and ask for the endo's nurse. Tell her you don't want to waste time or money(in a nice way) and see if she can answer a few questions for you. IE;

Does, dr-what'shis-name'' dose by tsh only, or by the T3&T4?
Has dr-what's-his-name. ever successfully tried the ''block and replace'' method?

You get teh gist.