# what do you think?



## webster2 (May 19, 2011)

Here are all of my test results, so far. I have no clue what this means. I just want to feel better. Thanks, Sue

"Findings:
There is a heterogeneous radiotracer within the left lobe of thyroid with a small area of decreased uptake in the lower pole of the left lobe of the thyroid. The right lobe of the thyroid is absent. 24 hour uptake within remaining left lobe is increased, measuring 41.1%.

Impressions:
Status post right hemithyroidectomy. Increased heterogeneous uptake within the left lobe of the thyroid with areas of relative decreased uptake in the lower pole. Findings may reflect long standing autoimmune thyroid disease or may represent a nodule. Ultrasound examination is recommended for further evaluation."

TSH 0.02 0.35-5.00
Free T4 2.4 0.8-1.8
Thyroperoxidase Antibody 35 <61

What does this mean?
I am having an ultrasound done tomorrow. And, a visit to an endo on Monday.


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## lainey (Aug 26, 2010)

Your labs and uptake are pretty clearly hyper.

What was the reason originally that they removed the first half or your thyroid? Was it because you were hyper, or because of a nodule?

How the sonogram is going to be much more revealing than the uptake is beyond me--a nodule is only a concern if they think you will take antithyroid drugs or ablate with RAI. Otherwise, if it were me I would just have the rest of it out at this point.

You need to ask the doctor for an action plan--ATD's, thyroidectomy--something. You've been left go for long enough.


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## webster2 (May 19, 2011)

I was hyper 20 years ago with a hot nodule. The surgeon said take Synthroid for the rest of my life. GP said not to. I listened to the GP, and regret it now.

I was wondering the same about the sonogram. It does seem like it is not as conclusive as the uptake.

If I have a choice, I'd like the rest of it out ASAP. I have a lot of pressure on the left side of my neck. I am not interested in RAI. It was not an option before.

Thank you, an action plan would be great. I'll ask. I can't wait to feel better!

Thanks again!


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## Andros (Aug 26, 2009)

webster2 said:


> Here are all of my test results, so far. I have no clue what this means. I just want to feel better. Thanks, Sue
> 
> "Findings:
> There is a heterogeneous radiotracer within the left lobe of thyroid with a small area of decreased uptake in the lower pole of the left lobe of the thyroid. The right lobe of the thyroid is absent. 24 hour uptake within remaining left lobe is increased, measuring 41.1%.
> ...


Decreased uptake seems to suggest a solid/calcified nodule in that area.

And of course even w/o the FREE T3, one can see you are very hyperthyroid. Your uptake also suggests hyperthyroid.

The TPO is suggestive of autoimunne disease.


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## webster2 (May 19, 2011)

Thank you for the info. I am relieved to have a reason for feeling so lethargic. Nice weather has finally arrived, and I am too tired to enjoy.

I've just come back from the ultrasound. It was a bit uncomfortable when she pushed the gadget onto my throat. I was really surprised when she checked the right side too!

I go to the endo on Monday. I sure hope they start doing something other than testing, like chopping that bad boy out! I am not nervous at all for surgery. I've had it before, and came through like a champ! I don't even mind my scar which is about 4 inches long.

You know it could always be worse! This is really a minor blip.


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## webster2 (May 19, 2011)

What's a good link to learn about autoimmune disease? TYVM!hugs2 You have been a strong shoulder and a font of knowledge!


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## Andros (Aug 26, 2009)

webster2 said:


> Thank you for the info. I am relieved to have a reason for feeling so lethargic. Nice weather has finally arrived, and I am too tired to enjoy.
> 
> I've just come back from the ultrasound. It was a bit uncomfortable when she pushed the gadget onto my throat. I was really surprised when she checked the right side too!
> 
> ...


Well...................if you have insurance, they are going to run the gamut with you and meanwhile you suffer. It might be a good idea to put your foot down on this stuff here.

Give that some serious thought. And you don't want RAI for another reason, if it is cancer, you would never find out. Get it out and have it sent out to pathology. The yay or nay of it could affect your long-term treatment options.


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## webster2 (May 19, 2011)

We are very fortunate to have a good insurance policy. My husband feels they are going to do a lot of testing because our insurance will cover it.

After viewing some of the posts here, I have learned RAI may take more than one application. I believe you had it 3 times. The restrictions are so much more stringent than they were 20 years ago. I work where pregnant women and children frequent. I want it out now, and to get on with life!

I had a spinal fusion a year ago, and said that was it for surgery for me, forever. Well, I may have jumped the gun on that one!

You bring up a very good point about RAI and not knowing the pathology. On Monday, I am going to be adamant I want it out now! My kayak needs me!

Thank you again for being the voice of reason. I might be panicked without you!


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## lavender (Jul 13, 2010)

I had a total thyroidectomy for hyper graves disease and had no trouble getting my insurance to approve it when my PCP was recommending RAI and my endo was recommending a year+ on meds before deciding anything. Perhaps it was because I was so sick (I was unable to work for several months because I was in thyroid storm), but they never questioned it.


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## Andros (Aug 26, 2009)

webster2 said:


> We are very fortunate to have a good insurance policy. My husband feels they are going to do a lot of testing because our insurance will cover it.
> 
> After viewing some of the posts here, I have learned RAI may take more than one application. I believe you had it 3 times. The restrictions are so much more stringent than they were 20 years ago. I work where pregnant women and children frequent. I want it out now, and to get on with life!
> 
> ...


You gave me a little laugh here!! LOL!! Yes; I did have to have it 3 times and not at all a surprise when hyper is in advanced stage. If I know then what I know now, I definitely would have had surgery.

I used to love to go canoeing but never had the pleasure of kayaking.


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## webster2 (May 19, 2011)

Well, well, well, the mail brought another result today that was not in the paperwork I picked up yesterday...or maybe it was, using a different term.

Thyrotropin Receptor AB 4.43 IU/L (Ref 0-1.75 IU/L)

All Greek to me!

Kayaking is wonderfully peaceful. I miss it.


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## lavender (Jul 13, 2010)

that's a new one for me too...

http://www.mayomedicallaboratories.com/test-catalog/print.php?unit_code=81797

Were they testing you for Graves or hyperthyroid? Your labs are pointing to Graves disease. That's a sucky way to be in the summertime! That's how I spent last summer.


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## webster2 (May 19, 2011)

Thank you. I found it on medscape, and it does seem to point to Graves. I just wish they'd get in gear and treat me instead of testing. I am way ready to get it chopped out. I only have half, so a quick job?

Are you better this summer? I am afraid I am going to lose my job. I can't function well or for very long...


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## webster2 (May 19, 2011)

Just received the results of the ultrasound by phone:
Nothing on Right side.
Left side is very dense with an ill defined 3cm nonconforming shape in lobe that has an egg shell, something or other. I can't read my note!

Anyway after complaining that I feel like crap, and may be in danger of losing my job, they have prescribed Methimazole 5 mg 3 times a day until I see the endo on Monday.


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## lavender (Jul 13, 2010)

Have they started you on any anti-thyroid meds? I think you would be well within your rights to ask for some at this point. Generally, Tapazole (generic is methimazole) is the medication they start with to cool off your thyroid, and propranolol can slow down your heart rate. I don't see the meds as a long term solution, but they could help you feel better until you can get surgery scheduled.

Can you get a referral to a surgeon? I agreed that the sooner out, the better! I saw so much improvement the minute my sick thyroid came out! Since then, it's been a long journey to battle against hypothyroid, but I do believe this is way better than hyperthyroid. I had to specifically tell my doctor I wanted surgery, that I had looked at my options and I wanted it out. He was going to keep me on meds and sick for a year or longer, but the minute I said surgery, I had a referral to a surgeon.

Do you have any vacation time or can you ask for FMLA? I had to go on FMLA last year, but still lost my job because it ran out before my surgery. I was in thyroid storm though, so things had way progressed by the time I got any treatment. Meds could prevent you from getting that bad and help you stay functional until surgery.

It's been a long journey for me unfortunately, and my thyroid replacement med has not been working very well. It does seem like things are a bit more on track now, but still not stable by a long shot. I wish I could offer you more hope, but I think I am one of those statistical anomalies where meds just never seem to work the way they're supposed to. Others who had their thyroids out around the time I did last year don't seem so bad, or at least they're not on here complaining as much as I seem to be! I just have to remember how far I have come from how sick I was a year ago, and the little improvements I have seen along the way. Hopefully things will go much smoother for you after surgery.


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## lavender (Jul 13, 2010)

Glad they got you some meds and an appointment with the endo. If you're set on surgery, be sure to tell him so he can refer you to a surgeon pronto!


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## Andros (Aug 26, 2009)

webster2 said:


> What's a good link to learn about autoimmune disease? TYVM!hugs2 You have been a strong shoulder and a font of knowledge!


http://www.encognitive.com/files/Auto Immune Disease, Genetics.pdf

http://www.teleplexus.com/Understanding_Autoimmune_Diseases.html

This is a vast field of study. And I personally have to rely on Dorland's Medical Dictionary to plow through.

http://www.dorlands.com/wsearch.jsp

Get started and have fun. Wait until you get into the binding,blocking and stimulating antibodies,autoantibodies and immunoglobulins!! ha, ha!

And I humbly confess that I know nothing; truly!


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## lainey (Aug 26, 2010)

webster2 said:


> Just received the results of the ultrasound by phone:
> Nothing on Right side.
> Left side is very dense with an ill defined 3cm nonconforming shape in lobe that has an egg shell, something or other. I can't read my note!
> 
> Anyway after complaining that I feel like crap, and may be in danger of losing my job, they have prescribed Methimazole 5 mg 3 times a day until I see the endo on Monday.


Your labs are hyper with a decent sized mass in your remaining thyroid.

Do you like the surgeon who you used the first time and are they still practicing?

I would take my results and get busy making a consult with a surgeon or 2.

Take the ATD's, they will help cool things off in the meantime.

Be assertive. You've had enough testing now.


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## Andros (Aug 26, 2009)

webster2 said:


> Just received the results of the ultrasound by phone:
> Nothing on Right side.
> Left side is very dense with an ill defined 3cm nonconforming shape in lobe that has an egg shell, something or other. I can't read my note!
> 
> Anyway after complaining that I feel like crap, and may be in danger of losing my job, they have prescribed Methimazole 5 mg 3 times a day until I see the endo on Monday.


Calcified rim is my guess about the eggshell comment. Combine that w/dense ill defined......................

I think it needs to be yanked.

And soon, I hope!


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## webster2 (May 19, 2011)

Thank you very much for all of your comments. This board has been such a great help and comfort.

I will start the methizamole very shortly. I have no idea why they waited so long to start something. A prescription for atenolol was given to me a week or so ago after I said my heart was out of control (154 in his office). It seems worse at night or if I exert any sort of energy.

I didn't know about the FMLA. I will pursue that. I love my job and have been there 17 years.

Lavender- I am sorry it is not great for you. I hope something will improve soon. What thyroid replacement do you use? I will insist on a referral on Monday.

Andros- I cannot believe that you know nothing! Makes me think of that character from Hogan's Heroes! I have been so grateful for all of your replies! And put at ease!

Lainey- The surgeon I had before moved to Atlanta shortly after the surgery. I will thoroughly screen a potential surgeon. I go to a teaching hospital so that may be a good thing. I was very lucky before. Thank you, I have reached my limit and want action. Life is too good to be hanging out on the couch! Thank you.

Off to the pharmacy!


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## lavender (Jul 13, 2010)

Oh, I do hope you find a good surgeon, and soon.

I am taking Nature Thyroid at the moment. I just switched from Armour, which I was doing well on until I seemed to have gotten a bad batch of meds as far as my doc and I can tell. I'm on the upswing, but I went very hypothyroid for a while.


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## webster2 (May 19, 2011)

I am glad to hear that you have some improvement! A bad batch of meds sounds very scary....this whole business is a tough road.


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## lavender (Jul 13, 2010)

Well thankfully my labs are looking a lot better now! I could still use a dose adjustment, but I have to wait until I see the doc again. There's no fast fix for thyroid.


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## webster2 (May 19, 2011)

It sure seems like that is the case. I called today for a surgical referral. The nurse kept asking if I was aware that thyroid medication would be needed for the rest of my life. I assured her I was, and was prepared for that.

After reading this today I am definitely ready to have it removed. I just picked up the results of the ultrasound. "This area likely corresponds with the cold area seen on the radionucleotide thyroid uptake" and "the findings are indeterminate for malignancy".

Yup, time to go!

I am glad your labs are looking up especially since it has not been a great post surgical time for you.


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## lavender (Jul 13, 2010)

It does sound like it is time for that sick thyroid to come out! Thyroid replacement hormones may not be perfect, but they are better than keeping in a sick thyroid! I suspect you will feel a lot of relief once it is out!


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