Should I get a Total Thyroidectomy?

Hello! I am fairly new to the thyroid world and am in need of some advice/guidance.

Background:
Average resting HR was around 77. I am female and 26.
On July 5th 2015 (Sunday) I was sitting in a Starbucks not feeling right. I checked my HR on my phone app - it was in the 110s. I was half convinced I was having a heart attack. HR wouldn't go lower than 110. Went home and made an appointment with my PCP for the next day. On the 6th went in to see my PCP she said her first guess was my thyroid so she ordered a CBC/other blood tests.

TSH 0.54 (0.4-4.5)
FT4 1.1 (0.8-1.8)
T3 Uptake 20 (22-35)

My PCP recommended eating more iodine for the low T3 and put me on propranolol for the tachycardia for a month. Palpitations started and I went back - told it was a side effect of propranolol, extended my time on it another month. It helped get my HR back to the 70s. Got dizzy/weird feeling at work about 6 weeks later - told to stop the propranolol cold. Did not feel right all night/next day. My arm had minty tingle feeling. Went to the ER and they said my heart was fine but did another CBC/other blood tests.

TSH 0.17 (0.36-3.74).

I stopped the propranolol and my HR stayed okay for a while. Then it started a weird cycle. I would wake up with my HR in the 60s. By lunch, I'd be in the 90s. By the time I got home from work, I'd be in the high 90s/low 100s. By the time for bed, it'd start going down to normal. It did this for a month or two. In September I got a facial (a present from a friend whose wedding I was in) where they asked if I had thyroid problems. I said I wasn't sure so they said they wouldn't use something to be safe. When I left the spa, my HR was 140. I sat down and it went to 120. On the way home, my friend's tire ripped and a tow truck had to be called. In the tow truck my HR was 150. Got back to my husband to go home and about four hours after noticing the rapid increase it started to go down. My PCP said it was likely an allergic reaction to the facial.

Heart rate evened out in October - until my friend's wedding. HR was at 120 almost the whole day, but quickly dropped after I got to my hotel room that night. That was the last real bout of tachycardia that I have noticed. The rest of October, November, and most of December went without any incidents.

Then on December 26th, I am doing my normal getting ready routine, at my parent's house as we were home for the holidays, and when I applied one of my moisturizers, I encountered a lump on the right side of my neck. It felt like there was a soft golf ball under my skin, that I am still 95% sure wasn't there the day before. In panic mode I Googled and came across the three most likely suspects - swollen lymph node, thyroid cancer, or a goiter. It was a Saturday and I was 150+ miles from my PCP so I went to the urgent care center where I was. The practitioner said it didn't feel like my thyroid or a lymph node but she drew blood to check my TSH and T4.

TSH 0.09 (0.4-4.5)
FT4 1.1 (0.8-1.8)

I set up an appointment for the first day I could with my PCP and waited. She felt the lump and recommended an ultrasound. Got it the next week. Here is the summary of my ultrasound from 1/12/16.
"Indication: Lump in throat, lump in right side throat since 26 December 2015
Comparison: None

Findings:The right thyroid lobe measured 4.7 x 3.1 x 2.9 cm. The left thyroid lobe measures 3.7 x 1.4 x 1.4 cm. Large cystic focus with intraluminal debris and septations occupying the right thyroid lobe measuring 3.6 x 2.6 x 2.7 cm. No vascular flow. Within the right aspect of the thyroid isthmus a small hypoechoic nodule was identified measuring 6 x 9 x 6 mm. Within the left aspect of thyroid isthmus a 1.6x 0.8 x 1.6 cm solid nodule is identified. It is slightly hypoechoic. No abnormality identified in the left thyroid lobe

Impression:
1. 3.6 x 2.6 x 2.7 cm complex cystic structure with septations in intraluminal debris within the right thyroid lobe
2. 2 solid nodules the thyroid isthmus. The larger of the 2 nodules measures 1.6 x 0.8 x 1.6 cm. Consider FNA of this larger solid nodule .. Otherwise recommend ultrasound follow-up in 6 months."

PCP then referred me to and Endocrinologist. Took 4 months to get in to see him.
Saw the Endo in April - diagnosed hyperthyroidism based on previous symptoms and bloodwork and ordered TSH, T4 and Thyroglobulin tests.

TSH 0.57 (0.4-4.5)
FT4 1.1 (0.8-1.8)
Thyroglobulin Antibodies <1 (<or = 1)
Thyroglobulin 98.5 (2.8-40.9)

He also ordered a biopsy and thyroid uptake and scan. Waited a month for the uptake and scan. Waited two months for the biopsy. Biopsy came back benign.

Here are the results of the scan:
"Indication: Suspected or known hyperthyroidism. No thyroid sonogram is presently available. Reportedly a sonogram on 1/12/16, apparently done elsewhere, revealed a 3.6 cm complex nodule on the right lobe, and two nodules on the isthmus. A TSH on 4/11/16 was normal at 0.57 (0.3-4.0 uIU/mL)."

"Radeioactive Ioding Uptake 24 hour uptake = 30% (normal 10 to 35)"

"Technetium Scan
There is quite a heterogeneous isotope distribution throughout both lobes. There is a spheroid area of relatively intense isotope distribution in the lower portion of the right lobe and another in the upper portion of the left lobe."
"Impression: In the context of confirmed hyperthyroidism, the radioisotope uptake value and the radioisotope scan findings together would be consistent with one of the heterogeneous, non-suppressed forms of hyperthyroidism, most likely either toxic nodular thyroid or two toxic adenomas. Unfortunately the previous sonogram images are not presently available for comparison."

Endocrinologist declared it a toxic multinodular goiter and said I had three options - control with medication, RAI, or TT. I opted for TT. Met with a surgeron in June and scheduled the TT for Mid-October (October 19th).

Back to now: I haven't had any symptoms (that I can tell) since last October (2015), almost a year ago. I feel fine. I had my PCP run the following tests mid-September (2016):

TSH - 0.72 (0.4-4.5)
FT4 - 1.0 (0.8-1.8)
T3 Uptake - 21 (22-35%)
TSI - <89 (<140% baseline)
TPO (Antibodies) - 1 (<9)
TBII - 14 (< or = 16%)

To me, those results do now show me being hyper. My current resting HR is in the 60s, sometimes even in the 50s. Once out of the Dr's office, surgery seems like such a drastic measure when I have felt fine and have no symptoms other than a lump on my thyroid.

I had a follow-up ultrasound on 10/12 and my doctor’s office gave a summary of the results over the phone but I won’t have the full report for another few days (cutting it really close). The office said the report does indicate an abnormal result with multiple nodules on the thyroid but notes that there is no change (growth) since my initial ultrasound in January.

I have read horror stories about people that have a TT and then go on to gain massive amounts of weight (in addition to not feeling like themselves and having no energy and mood swings…) and as someone who is already obese, I do not want to add to that. I have actually been losing weight the last three months (through diet and exercise). I have a friend that was hyper in 2012 and has since gained 60lbs after RAI. I don't want that to be me if it isn't necessary.

Guidance and advice, especially from anyone with experience with nodules, toxic or otherwise, would be appreciated. I am just so confused with what to do.

Hi xroswellx

I'm going through confusion as well. I'll post my readings but wanted to tell you I've had thyroid nodules for over 10 yrs. I didn't even know I had them until my sister's doctor glanced at my neck and said: "You have thyroid nodules." So that started the journey I wish I never took.

I saw an ENT (thyroid specialist) who did ultrasounds and needle biopsies. All was fine. My blood levels were normal but he still put me on armor thyroid to put me into "suppression" to try to shrink my nodules.

My PCP did not want me on the med as I had normal thyroid levels and said this was controversial. Flash forward: my ENT left the group. I went off armor last year but now my TSH is .004 L. My other readings are within normal range although T3 is high range.

I went through trauma with my husband's illness and subsequent death in 2015 which set off a series of health issues for me. I was just getting on my feet this September and feeling well when this TSH issue came up in a blood test.

Again, I feel totally fine physically. But my PCP now wants the RAIU to see why the TSH is low. Also - I do have some antibodies in my blood but the surgeon/thyroid specialist I saw this week said many people can have them without a problem. He said they probably won't treat me as I'm a-symptomatic but said it wouldn't be a bad idea to do the thyroid scan. I can't see an Endo until January 2017 as they're booked.

Unless I'm reading them wrong, I can't see that your levels are hyper. And you feel well. I'm facing the same quandary. Do or don't treat. My gut says give it a little time in my case as I'm still trying to recover from grief, which can give a lot of symptoms similar to chronic fatigue, depression, anxiety etc. Again I have none of those. I just miss my husband. I understand levels can fluctuate. The doctors don't want to hear about this. They just seem to want to forge forward.

Here are my readings from 2 weeks ago.

FREE T4 0.80-1.90 ..1.60
TOTAL T4 4.5-12.5 ..10.2
T3,TOTAL 76-181 ..142
T3,FREE 2.3-4.2 4.1
TSH 0.40-5.00 ..<0.004

From what I see, the only thing off is the TSH.

When I was young, I suffered terrible occular migraines and tachycardia. No one ever tested my thyroid. No one knew why this was happening to me. Each night, 30 minutes after falling asleep, a gush of adrenaline would wake me up with racing heart, much like you experienced but during days in your case. I had EKG's, wore a heart monitor, etc. All was normal. I lived this way for about 20 years.

I had cyclic occular migraines increasing during pregnancy. But ... after emergency hysterectomy in 2000 ALL of the symptoms disappeared within 6 mths of my body adjusting to the rapid loss of hormones. I never took HRT - just used natural progesterone cream. So I'm positive my problems were estrogen related.

While my husband was ill I was a stone but toward the end my body began to break down and my migraines returned. Not the tachycardia however. A week after he passed, I developed ongoing health issues. I believe the thyroid issue is associated with grief and chronic stress which after days of scouring the Internet and speaking with others, trauma can trigger hyperthyroid.

Off armor my nodules have begun to shrink. I'm wondering if they could be shooting hormone into my blood and lowering my TSH. At this point I just want to be left alone. I'm sick of being sick. I'm sure you understand the feeling

I'm sorry I can't advise you on treatment, which is up to you and your doctor, but as you wanted to hear from others with nodules I'm posting in response.

Not sure if I should be saying this, but if it were me, and levels were normal and I had no symptoms, surgery seems drastic. Did your doctor say this could be random or transient? Did he say it's dangerous to not have the surgery or any treatment? Did he give you other options at this point? What did he say about your current levels and the fact that you're now a-symptomatic?

In my case, I'm not sure I want to put myself through the stress of a radioactive iodine scan. Reason being, I kicked the tachycardia and tinnitus and migraines are under control. I don't want to rock the boat. Did you have any side effects from the RAIU?

Would you happen to know if there is more radiation in the uptake scan compared to a CT scan? As yet no one has told me their experience with radioactive iodine uptake scan. Of course doctors say x-rays subject you to radiation too but what is the ratio? If you have any idea, please let me know.

I hope your doctor can answer all of your questions. Again, my opinion is just that. I have no medical knowledge and am struggling with thyroid myself. I would like to offer support and good wishes.

Please post back with your decision and how you're feeling. Good luck with whatever you choose to do.

hugs
Jeannie