Should I go through with a Total Thyroidectomy?

[Keri_Lynn]

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.

[Barb135]

Hi Keri_Lynn... Nobody can tell you what to do; that has to be between you and your doctor.  Since you don't have symptoms of hyperthyroidism anymore, perhaps it would be worth a visit to your endo to discuss all this with her/him.  

I can make a few observations, though that might help you out...

First off, even though your TSI result might indicate negative for Graves Disease, because it's not over the 140%, the fact is that someone who doesn't have Graves should have less than 2% TSI, so in my opinion, you really do have Graves Disease.  It may be in remission right now, but it may come back with a vengeance at any time...

Secondly, there "are" abnormal findings on the ultra sound report; is it really worth taking a chance for?  

You're aware that having your thyroid removed will leave you permanently hypothyroid, which is where many of us are, who have Hashimoto's, which is another autoimmune thyroid condition that destroys the thyroid... I fully understand your concern about the weight issues, people not feeling themselves, etc following TT.  Once we have hypothyroidism, no matter what the cause, we run this risk, because we're dependent on the replacement thyroid hormone medication to take over the work of our thyroid.  It depends on our doctors, many times, whether we're successful or not, because there are certain tests that need to be done and they need to be interpreted properly so our medication can be adequately adjusted in order for our hormone levels to be optimized.  Only then, can we prevent the weight gain, mood swings and other symptoms of hypothyroidism.  

Most people are prescribed a T4 thyroid medication after a TT.  The body doesn't use that T4 medication directly; it must convert the T4 to the usable T3.  Of the Total T3 in your blood, most will bound by protein, so we need to test Free (unbound) T3.

The tests that need to be ordered periodically are Free T4 and Free T4, along with TSH.  I noticed that your doctors were ordering TSH and Free T4, but they didn't order a Free T3 at all.  Free T3 is the hormone that's actually used by nearly every cell in your body, so if Free T3 isn't measured, you can't know if you have adequate amounts.  

I hope this helps and please be sure to ask any other questions you might have...

[Smendez03]

My story matches yours almost too close. Same issues with thyroid nodule being benign. Same issues with pulse rate being high out of nowhere. Now resting sometimes in the 50s sometimes 60s. Took forever to see an Endo - recommended TT. Only I got the TT a year and a half ago and I am in worse shape. I have heart palpitations, high pulse, anxiety, ect. I haven't gained weight but I have lost weight. Wish I could be more positive. All of us are different and your body may react differently to the medications.