Newly diagnosed Goiter

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mrsbugzy
Veteran Member


Date Joined May 2012
Total Posts : 641
   Posted 8/30/2012 5:37 PM (GMT -6)   
Hi all, this is my first time in this subject...in a nutshell...
I have had thyroid problems for many many years now. My doc and I couldn't regulate my thyroid for years (my # was 60 at one point)..Then when I was diagnosed with celiac, and went on my gluten free diet, my numbers were the most normal they had ever been! :-) (like 8), NOW, we are having problems again confused In January I had to have my large intestine removed and part of the small one as well, and a hysterectomy. Since my gut is not working properly again, my numbers are way off.. recently I have had to change my synthroid 3 times, each time we up it, my numbers get worse.
I just had an ultrasound and they are now saying I have a goiter. I didn't really think a lot about it, but then I talked to my mother and found out 2 women in our family died from goiters. They apparently grow in, and not out, in our family. And, another aunt has had to have several removed because they have grown in and started to close off her airway. ( same way others died)...and one Uncle had Graves'...
SO, at first my doc was just going to monitor this, but now she feels I need to go to an Endochrinologist..
my question is this: what are some key questions I should ask when I go???
This is all very strange for me. thanks!!
Celiac
total colectomy with ileo rectal anastomosis 1/12

cfs
Regular Member


Date Joined Aug 2011
Total Posts : 78
   Posted 9/3/2012 6:38 PM (GMT -6)   
When you say goiter do you mean nodules? A lot of us have enlarged thyroids but not necessarily nodules.

maggiemay
Regular Member


Date Joined Feb 2011
Total Posts : 153
   Posted 9/9/2012 11:20 PM (GMT -6)   
I really don't know anything about goiters. I wish I could help you. I hope someone
comes along who has experience with a goiter.

I did find this reference at Mary Shomon's site. Maybe it will help:

http://thyroid.about.com/cs/nodulesgoiters/a/nodules.htm

Let us know what you find out.

mrsbugzy
Veteran Member


Date Joined May 2012
Total Posts : 641
   Posted 9/19/2012 7:35 PM (GMT -6)   
Cfs,
I have no idea what she means by goiters..just that it is a lump on the thyroid... So I am clueless..
Maggie,
Thanks for the link up! I will look :)
Celiac
total colectomy with ileo rectal anastomosis 1/12

Painstop
Regular Member


Date Joined Sep 2012
Total Posts : 21
   Posted 11/8/2012 3:22 PM (GMT -6)   
I goiter is just an enlarged thyroid. Some of them have nodules and some of them don't. Some of the nodules can not be seen on an ultrasound. Goiters usually cause hyperthyroidism which causes joint and muscle pain and stiffness, increased heart rate of 100+, anxiety, irritability, heat intolerance, weight loss, shaking all over, and other things. The imbalance of the thyroid hormone can mess up your entire body functions. Treatment for hyperthyroidism is usually to kill the thyroid with radioiodine therapy or to have your thyroid removed (surgically). Either way you will have to take hormone replacement therapy the rest of your life. I start radioiodine therapy in january 2013. The radioiodine therapy can take 3 to 6 months to works. Your levels must be monitored during these treatments and the us hormone replacement to bring you t4, t3, and tsh levels back to normal. Good luck and I hope this has helped you.
~~~If we didn't laugh, we would all go insane.~~~~~

Painstop
Regular Member


Date Joined Sep 2012
Total Posts : 21
   Posted 11/8/2012 3:24 PM (GMT -6)   
info in previous post can be found at www.thyroidawareness.com
~~~If we didn't laugh, we would all go insane.~~~~~

Judy2
Forum Moderator


Date Joined Mar 2003
Total Posts : 9465
   Posted 11/10/2012 9:42 AM (GMT -6)   
I had RAI treatment in 1993 for Graves disease (hyperthyroidism). I had a heart rate of 132, suffered from heat terribly, couldn't sleep and was edgy and irritable before surgery. I did have a goiter, but it was small enough I hadn't noticed it until the endocrinologist pointed it out.

I had one dose of RAI, then weekly levels done - I was waiting for urgent surgery that couldn't be done until the thyroid levels were normal or below. After four weeks I was also put on medication to suppress the thyroid, which was very unpleasant for me but did get me ready for surgery in a few weeks.

By about three months after my initial treatment I became hypothyroid and was started on hormone replacement. Over the next few months I needed frequent labs and dosage adjustment, then occasional slight adjustments for the next couple of years.

I've now been stable on 200 mcg of levothyroxine now for more than six years. I have levels done twice a year.

It's important to remember when you've had your thyroid surgically removed or ablated with RAI to wear a medic alert tag or carry information on a card (in your wallet next to insurance card is a good place), because your thyroid status needs to be taken into consideration with serious injuries or surgeries. Other than this, I live a completely normal life and really only think about my thyroid when I take that little pink pill every morning.
Ulcerative colitis diagnosed in 2001; symptoms as early as 1992. In remission since 2006 with Remicade.
Inflammatory osteoarthritis; osteonecrosis from steroids
Grave's disease successfully treated with radioactive iodine and now on Levothyroxine.
Type II diabetes induced by steroids.
Meds: Remicade, Colazal, Levothyroxine, Mobic, Metformin

Moderator, thyroid forum

cfs
Regular Member


Date Joined Aug 2011
Total Posts : 78
   Posted 11/13/2012 11:33 AM (GMT -6)   
I am always happy when I hear of people having positive experience with RAI. I want to stress that for someone who opts for RAI, you really have to have confidence in your endo's skills in monitoring hypothyroidism. It's not rocket science.

Having dealt with hypERthyroidism, and still, I have a little goiter (tra la la, it's that time of the year ;-D) , I want to say the flip side. I haven't had RAI. I've successfully taken anti thyroid drugs and have a fully functioning, intact thyroid. Since TSH can stay suppressed into treatment, I've come to respect getting a full thyroid panel, i.e. T3 and T4, and never relying on TSH alone. Mary Shomon is again a fine source to explore this more.
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