# Question on uptake scan results



## bdavis (Feb 26, 2016)

Hi all, I am trying (still, if you have read my other posts!) to decide between surgery and the pill.

I went and picked up my scan results to take to my surgeon next week and they confused me a bit: here is the main part of it:

"intensely hot nodule in the left thyroid lobe mid to superior aspect. This suppresses the remainder of the gland with very little activity in the right lobe. The four hour uptake is 8.4%. Normal is 5-15%. The twenty-four hour uptake is 28%. Normal is 10-35%."

SO, I see that it is hot, but it looks like my uptake results were normal? Does anyone know what that means? My TSH is .06 (range is .4 to 4.5).

I am thinking that maybe my surgeon could just remove the left lobe and maybe I would still have some thyroid function left?

My endo says that the nodule is so hot that it would have good results with the RAI and maybe the right side would kick in after, but like I have read here and other places, that is pretty unlikely.

Anyone understand the "normal" readings above? thanks so much.


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## joplin1975 (Jul 21, 2011)

All they are basically saying is that the nodule is so hyper-active that the rest of your thyroid gland doesn't have to work hard, so its function is low.

Since RAI is non-discriminating, I wouldn't -- personally -- select RAI if you were hoping to retain some function. Surgery would be a better, more "precise" option. That said, there's no guarantee that the remaining side of your thyroid would kick back into gear and produce sufficient hormone.

Which kinda gets you back to square one: there are pros and cons with both procedures.


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## bdavis (Feb 26, 2016)

Thanks! Yes, I am really weighing both. I have decided against long-term anti-thyroid meds based on what I have read...and my endo isn't a fan of them either. That makes sense about the results, but when I see that word "normal", I just want to forget I even have a problem!


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## bdavis (Feb 26, 2016)

webster2, thank you for your response...I have a question...did your endo want to do RAI and then you went to a surgeon to ask about surgery? that is my plan. I see you have had so many issues  Are you second-guessing the surgery?


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## webster2 (May 19, 2011)

No, I went from a GP to a surgeon. The surgeon was the one that said RAI was not an option. No, I have never second guessed the surgery. I wish I had listened to the surgeon and taken the synthroid. I did for one year after the surgery but felt good and figured I could get by without it. My endo thinks I had autoimmune issues way back then that were not diagnosed. I feel better now than I had felt in a long time and I am really happy about that.


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## bdavis (Feb 26, 2016)

I see that you had thyroid storm, Graves, and cancer  Did all this happen after your first surgery...and you think maybe because you didn't take Synthroid?).

I can see stopping it because you feel good. I don't actually feel that bad right now and it's easy to think I just won't do anything. I haven't had weight loss, and my heart doesn't race, but I do have the anxiety and palpitations...however, I have other reasons for both of those (menopause, recent surgery, last child off to college). I am so anxious NOT to rush into anything but I don't want to get big complications if I do nothing.

I am leaning toward surgery but my endo is really pushing RAI. I will see what my surgeon says. I totally trust him...he did my parotidectomy and he won't do it if he doesn't think it's the right path for me.

Thanks so much for sharing.


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## webster2 (May 19, 2011)

No, I don't think not taking the synthroid caused any of that other business. Autoimmune disease would have happened any way. If I had continued taking the synthroid, I would have been monitored on a regular basis For a long time, I felt good after the first surgery. i was in my early 30's and an active person.

The GP, I had before the hot nodule was found, tested many things before thyroid tests. I was seeing her because I could not carry a pregnancy to term. She tested a lot of things before she ran a thyroid test and that lead to the scan where the hot nodule was found. By then, I was not feeling well at all. I could not find a deodorant that would keep up with all of the sweating I had; I was even sweating between my fingers with out exertion. I slept all of the time and lost 9 pounds in one week without trying. My heart was racing like crazy.

The surgeon I saw said RAI would kill the whole gland. I had an uneventful surgery. I did take the synthroid for one year because I got pregnant but after the baby was born, I stopped taking it. For quite a few years, I felt okay but had weird spells which I guess was the beginning of Graves.

I don't know if a hot nodule will burn out on it's own, or not. I am glad you have a surgeon that you trust and will help you decide what is best for you.


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## bdavis (Feb 26, 2016)

Oh, thank you so much for all this information. I also seem to have few symptoms.....my nodule has been monitored for three years with nothing happening...2 benign FNA's and it hasn't grown. My endo seemed to order the bloodwork as an afterthought and I actually had to call for results (I was interested in the Vit D as I had been trying to raise it)...then suddenly I was having the uptake scan with talk of the RAI. I feel so uninformed. As to symptoms, I do have dizziness/vertigo and anxiety, and I feel my heart "skip" which always makes me have a little cough. These can all be part of menopause and the heart thing is supposedly common...so it's hard for me to think my thyroid is out of whack. I haven't had any weight loss...in fact, I have been gaining. I do have the sweaty times but once again...menopause? I would LOVE to do nothing and just be monitored. My endo wants me to have the pill before April 4 (the 30 day mark from having the scan) and he says I am at risk for heart problems and bone problems...but he did say "over the years" damage could happen. I just had a parotidectomy, which was major surgery (and I wonder if that got my thyroid going) and I am dreading more surgery, but the pill worries me more only because of taking my whole thyroid.

Sorry this is so long. I am posting other places on this site. I wish so much someone could look in a crystal ball for me and tell me exactly what I need to do to be on the path to good health!  I so appreciate you sharing you story with me.


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## webster2 (May 19, 2011)

Yikes, I almost hate to tell you this but when I started feeling "off" I went to the doctor and they said I was experiencing menopause. I found that hard to believe because I had a hysterectomy many years before. I was sick for a long time before I got diagnosed. It was the thyroid storm that did it even though I felt like crap, I was glad to know what was going on. After that, things happened quickly; it took awhile but I feel great. I am almost 60 and feel so much better.

A crystal ball would be nice, wouldn't it! Good luck to you!


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## bdavis (Feb 26, 2016)

webster2, did you feel bad with the hot nodule and the accompanying hyper diagnosis? Or just after the years of feeling good? I don't want to "not do anything" and head into a thyroid storm, but I don't really feel bad, just "off", and I think it IS menopause.

I do want a crystal ball!


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## webster2 (May 19, 2011)

The first diagnosis I received was hyper with a hot nodule, and yes, I felt terrible. I slept all of the time, had diarrhea a lot, perspired profusely without exertion,heart palpitations, lost weight without trying and had periods that lasted a day. I did not have a thyroid storm during this time.

The second time I was diagnosed hyper I did have a thyroid storm. I had terrible insomnia, gained weight, was moody and extremely irritable, heart palpitations, exhaustion, muscle weakness, trouble concentrating sometimes using the wrong words when speaking, I was just a big mess. Just before the thyroid storm, I remember being paranoid which I have never experienced.

Crystal balls would be an excellent tool but your doctor will be able to guide you. It is not unreasonable to think that one half could function enough for you. I believe mine would have if I had not had autoimmune troubles, And, even with autoimmune blips, my life is great.


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## bdavis (Feb 26, 2016)

Thanks again for sharing! All of your symptoms that second time are ME! I have been attributing them to menopause. The speaking the wrong words thing really hits home...I have felt that I had a brain tumor or something. I think it, and I say something completely different. My kids laugh it off, but honestly, it scares me. I have weight gain and muscle weakness (my legs sometimes feel like water) and concentration is impossible. I have to continually repeat to myself what I need to remember for the moment (ie, feed the dogs, feed the dogs). I was worried it was Alzheimer's. I do sweat occasionally a LOT (thought it was being fat and having menopause approaching). I feel that my endo blows off a lot of things...he is very kind and sweet but to him, I am sure this is just another patient. To me, I feel that the last year has been incredibly tough. My moodiness has caused the family to have some interventional meetings! On top of that, I had a car wreck in November, surgery for the parotid tumor in December, surgery for glass in my finger from the car wreck on NY Eve, and my last child has gone off to college. I am truly a mess and I appreciate it so much when you say "Life is very good", because that is my goal in all of this. I want to be my old self! I am afraid of the RAI and afraid of the surgery and trying so hard to make the right decision to get back on track. I so appreciate you sharing your journey!


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## webster2 (May 19, 2011)

I spent a lot of time thinking I was bi-polar. I would become irrational at people randomly ( my poor husband). It was a very tough time for all of us. I was terribly moody. I am the director of a small public library and one of the trustees wanted me removed from my position. I'm pretty sure a lot of the patrons felt the same way too. Once I was diagnosed so many people told me about their thyroid troubles. There are a lot of people that suffer with thyroid imbalances.

Wow, you have had a rough time recently. I wonder if surgery might trigger some thyroid troubles to those of us that might be prone to them? I had a spinal fusion in April the year before my thyroid blew up as well as my appendix removed in the same year.

I truly was a mess. I knew something was wrong but kept being told it was menopause which was frustrating. I was never calm either, always felt jittery. I still marvel at what it is like to be calm in body and mind.

Good luck to you. I am pretty sure the outcome of RAI and surgery is the same; thyroid replacement medication for life which isn't so bad. Finding the correct medication can be a bit tricky and can take some time. I chose surgery the second time because it was the devil I knew. It is an easy surgery to recover from, as far as surgeries go. Every time I see one of those "Life is Good" t-shirts, I think it really is.


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## bdavis (Feb 26, 2016)

Oh, golly, so much like me. And everyone says menopause, but truthfully, I am not there yet...still having periods...but age 55 so that's the go-to for all the mood swings, crying, headaches, jitteriness, incoherence, etc...

I had so much blood work done last year, I don't see how they missed this. My TSH was low in November and then non-existent (according to my endo) in Feb. I guess I was hyper for my December surgeries, which I have heard is not good. However, I agree that the surgeries likely made my thyroid go "hot". I read that trauma or surgery can do that. And my surgery was on my neck.

I agree, the outcome is likely the same with either treatment. I would LOVE to have surgery just take half, but I suppose the other half might act up later and I will wish I had just had it out.

I will probably go with RAI but I am waiting to see what my surgeon says. Good to know the surgery isn't too bad. The parotidectomy was really really hard.

Thanks again!


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## webster2 (May 19, 2011)

I hope you will check in after your appointment. Good luck!


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## bdavis (Feb 26, 2016)

I will! Thanks for sharing your journey! It makes me feel less crazy and more like maybe this can be fixed.


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## bdavis (Feb 26, 2016)

I am checking in after talking to my surgeon. He seemed to think RAI was a good option for me. I was hoping he would be very positive about surgery, but he said the standard of care for my situation was RAi and that it would likely only kill the nodule and I should keep the rest of my thyroid. He was willing to schedule surgery for me, but said most patients left his office and went ahead with RAI in my situation. I called my endo to schedule it for Monday. I feel sick about it...I want so much to not do it, but I have heard from three doctors now to get the RAI and get on with my life. 30 millicuries is a small dose (according to all of them), and I should have no side effects and be feeling better soon. I think my extreme emotions right now are probably 1/2 because of the hyperthyroid. But I am scared. I also hate that I have to make this decision (to me) so fast. I would love to think about it for a few months, but I don't want another uptake scan so I have to do it within a month.

Thanks so much for all your advice. I don't think this is the answer I wanted, but since the actual surgeon suggested I stick with RAI, it seems to be the way to go.


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