graves disease , whats next

[jen699]

ok yesterday got my dx after month and half of questions, 15 lb weight loss. I have graves disease. the endo dr wants me on antithyroid med for next 3 weeks , checking my blood each week. I want surgery asap. he says i need to be on the antithyroid med for a bit first and he will get with my ins and select a surgeon for me. he said my thyroid could be storing hormones inside it as part of this disease and wants to shrink it. I am extremely fearful of meds, he says the most this very low, easily tolerated drug will do (cant remember the name, but it is the most mild) is give me a skin rash. any input??? They doubled my nerve meds for the anxiety and chest palps (cant take beta blockers), and gave me some sort of think cleary med they use for adhd in adults.. any input from anyone who may have gone thru this. he said the 24 hr uptake scan looked worse than the blood work did. what does that mean?

[jen699]

LOL i did spit my coffee when I read the butter knife thing!! thank you all and I will be watching for your words of wisdom. I go tomorrow for blood work will let you all know I am feeling a little better in the antithyroid, so I am trying to calm down. I have said before that I could just rip someones throat out, never once thought it would be my own!! hehehe. thanks all! cheers and I'll chat with you all later

[carolina30]

I once had the thought to rip it out with my bare hands.  I told my dad about it,and he shared his story about a finger that has persistent nerve damage--he said he was about to whack it off while fishing on the ocean one day.  I suppose it is a normal reaction--to want to destroy what is causing the problem.  It is more difficult to leave it alone.  

[Shari4]

Or, you could get that butter knife....  

[carolina30]

I had Grave's Disease for two years untreated.  I refused to treat it.  Lost my hair at one point, had some heart palpitations--two years later--thyroid began to fail.  I have antibodies for both Grave's and Hashimoto's.  It is up to you what you want to do, but I didn't want to do anything that I thought would be more toxic than being hyperthyroid.
Relax and give it some time.  Hang in there:)

[Shari4]

Omg, cbread!  You made me choke on my water!  I am laughing hysterically as I write this.  I always thought about typing something insane like that!  Bwahahahahaha!!

Thanks!

Shari

[cbread]

Jen- another symptom of hyper thyroid is extreme anxiety- about everything! So your feelings are normal. Anti-thyroid meds do work, but it takes time and when you have Graves you can get so anxious to feel better you could resort to cutting out your thyroid with a butter knife (ok maybe that was just me...) anyway, try to be patient and keep checking your bloodwork. Anti-thyroids aren't so bad..

[Shari4]

I need the blessings :-)  Hang in there!  We'll be right here.....

[jen699]

Thank you for your words of wisdom and believe me I know they are the best because you have experienced it!! I'll have those number checked and not rush into anything!!
please keep me updated as I will you!
God bless till we write again!!
God bless you and yours!!

[Shari4]

Hi Jen!

Please listen to 898 and get those labs done for Antithyroid Antibodies, as well as TSI.  I am also 43, and was extremely frightened when HyperThyroid popped into my life!  

My uptake was as follows:

IMPRESSION:
1.  Normal 24-hour thyroid uptake of 31%.

2.  Thyroid scintigram study is NEGATIVE for thyroid mass or enlargement.

My blood tests are listed in my Journals.  I started taking PTU (after much FREAKING OUT about it), and sure enough, my blood tests improved after 17 days on a very low dose!

My first Endo wanted to rush me into destroying my Thyroid with Radioactive Iodine Ablation, until the people on here urged me to get a second opinion.  Right now, I feel perfectly fine, and will get another blood test next month.

Try to relax.  The initial diagnosis can scare you into hysteria.  Believe me, I was a complete mess for months, even though I felt perfectly fine!  The people on here are truly wonderful, and helped save my Thyroid from being destroyed prematurely!

Keep us posted, okay?

Shari

[jen699]

I go back for blood work next week I'll ask him to check that. thanks for easing my mind!!

[898]

If the TSH and T4 are in normal range, it means the condition stabilizes.
However the antibodies still needed to be checked.
Our community memeber shari4 was in the similar situation, plus her first doctor ordered RAI treatment for her and was about to diagnose her with Grave's disease.

[jen699]

the endo did not even mention any of that ! I was guessing he didnt see anthing on the scan to indicate that. I am starting the antithyroid med today. to see if that helps. it should I am sure. maybe that is why he is not rushing into surgery huh? I just found out my tsh, t3 and t4 test he ran yesterday look normal today, so I am assumeing that indicates nothing is worsening. Is that a correct assumption?

[898]

The uptake of 38 is NOT that high [some patients having as 60%].
In your case ultrasound [to exclude multinodular toxic goiter or toxic nodule] and TSI level needs to be done before proceeding with treatment or rushing into the surgery.

[jen699]

The right side was considerably larger, he said that is normal but not normal to be that much larger. I cant remember but I am thinking the 24 hr was 38. I am over 35 I am 43 years old. he said he expected by lab results to be worse, because the scan  and labs dont match up. he took more blood to retest and get current lab results. I want the surgery now, but he said it is ok to wait and take the anti thyroid med. I thought to shrink the tissue... less tissue less risk. My sister said something about he thinks my thyroid may be storing hormones in it... not sure I was out of it! You know we get all freaked out!!

[898]

Use word ************* in the link instead of  stars

[898]

Jen, first of all dont let the doctor scare you. What was the % for 24 hour scan? The TSI antibodies are present in 90% of the patients which help to discriminate between Grave's and nodular toxic goiter; in many cases the Grave's disease results in uniform and symmetrical thyroid swelling, http://static.*************.org/v/0.11.3.0.6833.29/images/comprofiler/plug_profilegallery/11459/pg_1727852508.jpg
unless you are over 35; it would be good idea to see if one lobe took more iodine then the other.
As you will cut down the iodine consumpton, your levels can be better controlled [this is especially true for patients with goiter].

[jen699]

I dont know about the TSI antibodies I had an uptake scan where I swallow iodine, it was done at 4 hrs and 24 hrs. the 4 hr was ok but the 24 hr was pretty bad. the blood levels I had with me were 2 wks old so the endocon. took more for retesting. He said he expected by blood levels to be worse since  the scan looked so bad. right side of thyroid is much larger than left. goiter is big. I am afraid of the antithyroid med but I am afraid of all med. I guess I have to take it to prepare for surgery is that why I have to take it?

[898]

I guess, I am asking this too late, wre your TSI antibodies elevated and have you had RAIU uptake/scan?