# Help!!! Newbie...what's next? Need doc in SE Michigan?



## Tired_of_hide&seek (Apr 13, 2011)

Hi. This is my very first post here, however I have been lurking the web in search of as much thyroid info since another journey of my health issues began at the end of 2010. Does anyone know of a good endocrinologist, head and neck surgeon, or thyroid specialist in South East Michigan? I am really frustrated with how things have been going with my current doctors.

For those that don't mind the read here's the long story....
between Christmas and New Years 2010 I developed a sore throat. I felt an enlargement on the right side of my neck and could physically see it when looking in the mirror...but I dismissed it as an enlarged lymph node due to lupus. About a week later, the right side of my face became numb from my eye to my neck. I went to the doctor January 8. The doctor was alarmed and ordered an ultrasound for me the following week. After calling several times to get the results of the ultrasound, the doctor's receptionist called me and asked me to have my labs drawn but still no ultrasound results. So being a good little patient, I get my labs drawn, wait a week, then call the office several times again to get the results. Finally the first week of March the doctor's office calls me and tells me I need a FNA biopsy and to go to the hospital March 8 to have it done...yet still no results  March 17, I get a phone call (finally) from my doctor's office referring me to a neurologist and they ordered more labs and a MRI of the brain. Last week I had my visit with the neurologist. What a QUACK! After rushing through my results and saying he could find no physical reason for the numbness in my face he proceeded to examine me. He insisted on moving my leg in an abnormal position for me and I yelled out in pain. Later that day my knee swelled up and I could not walk. So after a trip to the ER and a visit to a sports medicine orthopedic, they determine I have a torn MCL and need surgery (next week). Anyways...today I finally had a visit with an endocrinologist! She seemed like a good enough doctor, but she does work with the group of quacks and she even said she could not perform the kind of surgery of I need due to the complexity. She did however recommend someone, but I after the experiences I've had recently I need to do more research on that doctor or find someone highly skilled and recommended. Per the endocrinologist she said my labs look normal for the most part... TSH is 0.8 and Sed Rate is high at 24 but those were the only labs mentioned. She said the ultrasound showed multi-nodular thyroid goiter (which my mother-in-law wrote down for me). The right lobe measured 5.9cm x 3.7cm x 3.6cm. The left lobe measured 6.4cm x 3.3cm x 2.6 cm. The isthmus is 1.8 cm in AP diameter. The results of the FNA biopsy were (right and left lobe) both biopsies contain bland follicular cells, some with Hurthle cell neoplasm, a variable amount of colloid, and scattered histiocytes. Per the endocrinologist, she believes I have Hashimotos because of all the auto-immune history but she ordered additional labs today. She said at this point she can not say whether it is cancer or not. She also gave me 2 options.... 
Option 1. Every 6 months for the rest of my life have a FNA biopsy of the thyroid to look for change. This is because the Hurthle cells although common with Hashimotos, about 10% of the time it can be cancer and because of the large size and quantity of nodules I have now...once a year is waiting too long. If there is a notable change, then have a total thyroidectomy and go on meds and any needed cancer treatment. Hmmm...not so sure about that cause the last FNA was $2700.00 and 14 needles in my neck Thankfully I do have insurance but what if that changes...or the co-pay does? Besides will the insurance company even agree to pay for it twice a year? :confused0024: 
Option 2. Sending me to a specialist, because how complex the multi-nodular goiter is in size and growth (and the uncertainty that it is cancer) having a total thyroidectomy with biopsy after surgery, but I will have to be on meds for the rest of my life. This is what the doctor recommends. 
So in the meanwhile I have opted for this option. My appointment is not until June 2 but I can't help but feel this is a pretty major decision I am faced with. I'm just looking for support now. Maybe hope to talk to someone that has gone through a similar experience. Is there any questions I should specifically ask? Is there anything I need to avoid? I've been searching this forum...and all the info is great, but I can't help but feel so lost and alone on this. I just don't know what to do now and I'm afraid to just let things to continue to happen as they are. I'm not even sure what is the best kind of doctor I need for this issue :sad0049: I guess I just feel very overwhelmed. Of you've read this far...thank you for taking the time to read all this hugs7


----------



## Andros (Aug 26, 2009)

Tired_of_hide&seek said:


> Hi. This is my very first post here, however I have been lurking the web in search of as much thyroid info since another journey of my health issues began at the end of 2010. Does anyone know of a good endocrinologist, head and neck surgeon, or thyroid specialist in South East Michigan? I am really frustrated with how things have been going with my current doctors.
> 
> For those that don't mind the read here's the long story....
> between Christmas and New Years 2010 I developed a sore throat. I felt an enlargement on the right side of my neck and could physically see it when looking in the mirror...but I dismissed it as an enlarged lymph node due to lupus. About a week later, the right side of my face became numb from my eye to my neck. I went to the doctor January 8. The doctor was alarmed and ordered an ultrasound for me the following week. After calling several times to get the results of the ultrasound, the doctor's receptionist called me and asked me to have my labs drawn but still no ultrasound results. So being a good little patient, I get my labs drawn, wait a week, then call the office several times again to get the results. Finally the first week of March the doctor's office calls me and tells me I need a FNA biopsy and to go to the hospital March 8 to have it done...yet still no results  March 17, I get a phone call (finally) from my doctor's office referring me to a neurologist and they ordered more labs and a MRI of the brain. Last week I had my visit with the neurologist. What a QUACK! After rushing through my results and saying he could find no physical reason for the numbness in my face he proceeded to examine me. He insisted on moving my leg in an abnormal position for me and I yelled out in pain. Later that day my knee swelled up and I could not walk. So after a trip to the ER and a visit to a sports medicine orthopedic, they determine I have a torn MCL and need surgery (next week). Anyways...today I finally had a visit with an endocrinologist! She seemed like a good enough doctor, but she does work with the group of quacks and she even said she could not perform the kind of surgery of I need due to the complexity. She did however recommend someone, but I after the experiences I've had recently I need to do more research on that doctor or find someone highly skilled and recommended. Per the endocrinologist she said my labs look normal for the most part... TSH is 0.8 and Sed Rate is high at 24 but those were the only labs mentioned. She said the ultrasound showed multi-nodular thyroid goiter (which my mother-in-law wrote down for me). The right lobe measured 5.9cm x 3.7cm x 3.6cm. The left lobe measured 6.4cm x 3.3cm x 2.6 cm. The isthmus is 1.8 cm in AP diameter. The results of the FNA biopsy were (right and left lobe) both biopsies contain bland follicular cells, some with Hurthle cell neoplasm, a variable amount of colloid, and scattered histiocytes. Per the endocrinologist, she believes I have Hashimotos because of all the auto-immune history but she ordered additional labs today. She said at this point she can not say whether it is cancer or not. She also gave me 2 options....
> ...


Oh, yeah.......................honey bunny! Definitely surgery. I am almost 100% that this is the course for you to take.

Especially w/swollen lymph nodes and yes, I am aware of the complexity of diagnosing re the swollen lymphs. I too have Lupus (both kinds) and Sjogrens. But, your FNA...........................???? There would be no doubt in my mind as to what the course of action should be.

Let me know what you think of my input on this.

And welcome. Sorry for the reason you are here though.

Have you had Thyroglobulin and Thryroglobulin Ab?

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

Another Thyroglobulin and cancer
http://www.mdlinx.com/endocrinology...963/?news_id=811&newsdt=092010&subspec_id=419


----------



## Tired_of_hide&seek (Apr 13, 2011)

Thank you for the warm welcome Andros  After looking around these boards, I had a feeling if anyone was going to reply to my post it would be you! :hugs:

Very interesting links you shared with me...thank you! If I am understanding correctly the articles say they believe there is a direct link between auto-immune disorders and thyroid cancers? It does make sense in theory.

As much as the idea of surgery bothers me, I think the most realistic thing for me to do is have my thyroid removed. Especially when I take into consideration reading about the number of thyroidectomies performed where they are not certain about cancer, but later biopsy after removal finds cancer.

Now I just need to determine which kind of doctor would be the best choice to perform that surgery. I've read stories about people having to get emergency tracheotomies, voice changes, and worst. I'm not worried about a scar, but my 10 year old daughter loves to sing (and is really good actually) ...and loves me to sing with her and it would just break my heart not to be able to do that with her anymore. So any suggestions would be great!

Anyways, I guess I am off in search of my next question. If they do a thyroidectomy, biopsy it, and find cancer...what are the different possible course of actions?

On a side note please correct me if I'm wrong, but I thought SLE (systemic lupus) automatically included discoid lupus for most patients? Oh well...if not then I guess that is another thing I have been mislead on all these years, since I experience the discoid lesions as well. Those first began back in 1997 a few weeks after I had my gallbladder removed. Initially they said it was a delayed medication reaction and put me on steriods.

Roxy


----------



## Andros (Aug 26, 2009)

Tired_of_hide&seek said:


> Thank you for the warm welcome Andros  After looking around these boards, I had a feeling if anyone was going to reply to my post it would be you! :hugs:
> 
> Very interesting links you shared with me...thank you! If I am understanding correctly the articles say they believe there is a direct link between auto-immune disorders and thyroid cancers? It does make sense in theory.
> 
> ...


Roxy..........with the Lupus; if one can catch both of them in action then you know you have both but my research does show that some folks just have discoid and not the systemic or vice/versa. Who knows? It depends on the ability of the doctor to diagnose and the clinical criteria. We each are different yet so much alike!

If I lived in Michigan, I would help you with finding a good doc there. I do think your best bet is to find a good ENT surgeon and try to get recommendations.

Here is info which may interest you.

Thyrotoxicosis and cancer
http://lib.bioinfo.pl/pmid:2261908

Graves' and Hashi's cancer
http://www.thyroidmanager.org/Chapter18/18-cancothr.htm

And I know this will interest you a lot. My rheumatologist and I have discovered that by keeping my TSH suppressed @0.03, my Lupus antibodies (Anti-DNA, C3, C4) are barely detectable whereas at time the were through the roof!

If they find cancer; the course should be to take it. And then you will have follow up RAI most likely!


----------



## CA-Lynn (Apr 29, 2010)

I don't live in Michigan, but here are a couple ideas:

1. Enter "endocrinologist Michigan review" into your search engine, possibly adding the term "Detroit" and generally you will come up with some names and ratings by patients

2. Go to the website for Wayne State University Medical School's dept of endocrinology:
http://endocrinology.med.wayne.edu/
You should be able to find a good doctor there.

3. Check out this website. Enter your area.....
http://www.suggestadoctor.com/doctors_speciality_60_endocrinologydiabetes_metabolism.htm

Good luck!

You know, Cleveland Clinic is not that much further away.......


----------

