The THYROID Thread

[luvmarypoppins]

Do you guys really not feel your weight is affected by the synthroid? Everything says that it doesn't affect it but my body sure seems to do weird things it didn't do before my surgery.

My weight has stayed about the same the last year. I just went to the surgeon today. My endo has not adjusted the meds except once since the surgery. She is keeping me hyper. And now I am going to do the diet in May for 2 weeks for the nuclear scan, so hello LID and good bye another 20 lbs. I bet.

 

[tinkerbellang]

Yes, the LID will take it off - I think more because there's just not a lot to eat!

Good luck! I don't have to have another scan for 11 months!

 

[mrsklamc]

Wow! I didn't lose during the LID at ALL! I think my metabolism was just completely non resposive. I lost five pounds during the week the endo had me on cytomel right after surgery, but it came right back and has stayed there ever since.

 

[luvmarypoppins]

Mari - I had my 2nd thyroid surgery last March and it took me 2 weeks to get back to where I didn't have to have a nap every couple of hours!

Now - I have a question regarding the thyrogen. My endo didn't decide I needed RAI until December, after my surgery in March. Had the first round of thyrogen for "investigative" purposes - scan in November, then thyrogen again for RAI purposes in December. Told me thyrogen worked really well for me the first time - TSH was over 200!! Second round - the second shot made me so nauseus and I felt horrible for the next 2 weeks. Has anyone else had that problem?? After two weeks then I could only sleep for 3 hours at a time, then I'd wake up and couldn't go back to sleep, then feel so tired.

Anyway - I have been on the same dosage of levothyroxin since before my surgery. I haven't been tested again since the RAI - and I'm having almost every hypo symptom you can have. Is this normal? or should my endo have tested me 6 weeks after RAI??

Unfortunately, my endo left town 3 weeks ago, and I'm going to have to call his partner, whom I've never seen!

Just info from others who may have had the same experience would be nice! Thanks.

The 2nd thyrogen made me so totally sick too. I think I took some tylenol. I couldnt even eat anything. Maybe some gingerale. Good because I was getting so sick of that LID too. I didnt have any long lasting problems because of the thyrogen, Did you discuss this with the endo? My endo tests my blood every 3 months no matter what. I cant remember the 6 week blood test after the RAI, I might have or might not have. I do know I had to have one like 2 days after. Wishing you all the best.

 

[mrsklamc]

Wow. If thyrogen made you guys that sick I think I'd almost rather be hypo.

 

[KAMLEM]

Yes, Shari...I think I was referrring to you.

Just curious if they checked your calcium? That seemed to be a primary concern and I had at least 3, maybe 4 blood draws over the 24 hours after the surgery to make sure my levels were stable.

They didn't check it all in the hospital.

 

[mrsklamc]

They checked my calcium but the surgeon stated that it was because she had 'bruised' my parathyroid. I don't know if they would have otherwise.

 

[MariDisney]

They checked my calcium but the surgeon stated that it was because she had 'bruised' my parathyroid. I don't know if they would have otherwise.

It's so interesting how everyone's experiences are varied. My surgeon (the chief of oncological surgery at a large hospital) told me right from the beginning that they monitor the calcium "just in case" something may have inadvertently happened to a parathyroid. In fact, my endo told me that as well when he was referring to the surgeon.

 

[mrsklamc]

Ok ladies- what do you think?

I have been very excited to get into the much-loved local endocrinologist. Everyone who goes to her loves her (including someone on this very thread.)

I have an acquaintance who is participating in medical trials- she's been very overweight and they've put her on a new diabetic drug and the pounds have just been falling off. The dr. she sees is the head of endocrinology at a major hospital here and has excellent credentials. She says he isn't taking new patients off the street but she can get me in to see him. What do you think? Should I just meet with both of them and see what they say/who I like best?

 

[MariDisney]

Ok ladies- what do you think?

I have been very excited to get into the much-loved local endocrinologist. Everyone who goes to her loves her (including someone on this very thread.)

I have an acquaintance who is participating in medical trials- she's been very overweight and they've put her on a new diabetic drug and the pounds have just been falling off. The dr. she sees is the head of endocrinology at a major hospital here and has excellent credentials. She says he isn't taking new patients off the street but she can get me in to see him. What do you think? Should I just meet with both of them and see what they say/who I like best?

If you have an opportunity to meet with them both within a reasonable time frame and at reasonable cost then I would do that. Seems like a win win situation. My main question to the medical trial one is whether you can be treated for the big picture in terms of your endocrine system or whether you'll be limited ot trialing that particular drug. Personally, I'd be very wary of getting into a control/placebo group (which you wouldn't know most likely) when trying to control these kinds of things. I'd have a ton of questions ready before agreeing to a trial.

 

[mrsklamc]

I'm not interested in a medical trial so much as a good doctor. I'll be honest- I was diagnosed with Poly Cystic Ovarian Syndrome the same day that they were first suspicious of my thyroid- I was trying to get pregnant. My first endo said wait a year- between the PCOS and turning 30 this year, I don't feel like I HAVE a year. I know there are some docs who will let you try after 6 months, and if one of these will, well, they probably win.

 

[MariDisney]

I'm not interested in a medical trial so much as a good doctor. I'll be honest- I was diagnosed with Poly Cystic Ovarian Syndrome the same day that they were first suspicious of my thyroid- I was trying to get pregnant. My first endo said wait a year- between the PCOS and turning 30 this year, I don't feel like I HAVE a year. I know there are some docs who will let you try after 6 months, and if one of these will, well, they probably win.

I also have PCOS...and actually the way I got involved in looking at my thyroid, etc. is because we were back looking into fertility treatments this fall. I am about to turn 41. So, I know it's HARD HARD HARD but know you do have a a little bit of time. I agree, I wouldn't wait a year if I didn't have to, but going through all the fertility stuff is a nightmare. If they think you have a chance of conceiving naturally, I would try and give it 6 months if you hacen't already.

 

[jennz]

I'd say definitely meet with both. My first endo I went to when I moved was "wonderful" "fabulous" etc - I didn't like her. Hope that helps!

 

[Christine]

Re: Thyrogen making you sick. Thyrogen has always made me kind of queasy. On my third round of thyrogen, after the 2nd shot, I had an "episode" late in the evening. I had what can only be called a tremendous hot flash, rapid heart rate (around 160), and just terrible uncomfortable. This lasted 2-3 hours. I was scared. Should've gone to the ER but that scares me more.

I won't use Thyrogen again. My new endo has said that he has noted that patients can become more sensitive to it with each round. Next time I am withdrawing from med for 3 weeks so we can get an stimulated Tg test. But, ladies, I am 15 years out from my diagnosis and I would not have all this freedom of choice if I were new to thyroid cancer.

As for new endos--the important issue is to find an endo that has a BIG thyroid cancer patient population. Many endos seem to specialize more in diabetes. Find the one that takes the special interest in thyroid and thyroid cancer. That's where you want to be. The "good" endo in my town is all the rage with diabetics. He wasn't that great with thyroid cancer.

 

[KAMLEM]

I was diagnosed with Poly Cystic Ovarian Syndrome the same day that they were first suspicious of my thyroid- I was trying to get pregnant. My first endo said wait a year- between the PCOS and turning 30 this year, I don't feel like I HAVE a year. I know there are some docs who will let you try after 6 months, and if one of these will, well, they probably win.

I never had regular cycles, I'd go 4 or 5 months without one, and I had to take clomid to get pregnant. About 4 years ago I just stopped getting my period. My dr. said it could be PCOS but she just wasn't sure. Last fall we finally got my thyroid levels where they should be, more than a year after my surgery. Low and behold in November I got my period! I have had it every month since then. I have never been this regular and I really believe that it was due to my thyroid for many years.

 

[luvmarypoppins]

Ok ladies- what do you think?

I have been very excited to get into the much-loved local endocrinologist. Everyone who goes to her loves her (including someone on this very thread.)

I have an acquaintance who is participating in medical trials- she's been very overweight and they've put her on a new diabetic drug and the pounds have just been falling off. The dr. she sees is the head of endocrinology at a major hospital here and has excellent credentials. She says he isn't taking new patients off the street but she can get me in to see him. What do you think? Should I just meet with both of them and see what they say/who I like best?

I would meet with both of them. I am assuming they both take your insurance? I was given the names of about 4 or 5 endos from the large univ. hosp. group. When I called to make an appt. they said 2 wouldnt even see me (too many patients and too long a wait - months), I had the opportunity to also look them up with all info, on the hospital website. I chose a female who was new to the group. I still had to wait for her a while too. They told me even if I didnt like her I could NOT switch to one of the other ones since their policy is that the doctor has to "learn" your case etc.

On another note. I went to the ent surgeon for a one year check up. I still now have to go back to physical therapy because my arm is not good and he said the nerve has not come back yet. I told him I will try a different place this time and I asked him what my prognosis was. Even with the stage 4 and columnar cell, he thinks I have a 90% chance for 10 years, Praise God!! We also discussed his surgical plan if it comes back. I still am so confused as to why all the drs. cant be on the same page with me, the rad. onc. says nothing, the other ent surgeon never had a patient with this and the endo thinks its coming back in about 3 years. Hmm, I think I will go with the best one for now??

 

[mrsklamc]

Jennz- I actually think once upon a time you told me one of them was your endo- Dr.A?

 

[mrsklamc]

As for new endos--the important issue is to find an endo that has a BIG thyroid cancer patient population. Many endos seem to specialize more in diabetes. Find the one that takes the special interest in thyroid and thyroid cancer. That's where you want to be. The "good" endo in my town is all the rage with diabetics. He wasn't that great with thyroid cancer.

Someone told me that the 'popular' endo specializes in PCOS, but she herself has HAD thyroid cancer, and another person I know ( the rare male actually) really liked the way she handled his thyroid cancer as well. I meet with her a week from today so hopefully it works out well.

 

[Christine]

Someone told me that the 'popular' endo specializes in PCOS, but she herself has HAD thyroid cancer, and another person I know ( the rare male actually) really liked the way she handled his thyroid cancer as well. I meet with her a week from today so hopefully it works out well.

The doctor that treated me was not actually an endo. He was an Internal Medicine doctor that treated diabetics and took a special interest in thyroid cancer because he had it himself. Very good combination!

 

[jennz]

Jennz- I actually think once upon a time you told me one of them was your endo- Dr.A?

Yep that's her. Definitely keep your appointment, she schedules 6 months out for existing patients!