# Scheduled for partial lobectomy/ithsmusectomy June 19 but need opinions



## nawal (Jun 7, 2017)

Hey everyone, 
So after years of feeling generally awful with unexplained weight gain, I went to my doctor and had my thhyroid tested. My levels came back normal however my doc did find a lump in my neck and sent me off to an ENT. After having an ultrasound, I was told the left side of my thyroid has a 6.5cm "complex mass" and the right side has a few modules between 2-3cm. Cancer is not suspected. Surgeon says we need to take out the left side and the isthmus but he did also mention my thyroid levels are at the extreme ends of "normal" and that I would be hypo within 5 years. After scouring the Internet for every possible thyroid surgery resource I could find, I ended up here  But my question is: should I ask morning of for the entire thyroid to be removed? My surgery paperwork says it may end up as a total thyroidectomy anyway, depending on what is found when they start the surgery. If I'm going to end up on these meds anyway, why not have the whole enchilada taken out now, right? Especially after reading other posts on here saying they wish the whole thyroid was removed and that it grew back, or they ended up going in years later to have the other part taken out..just need some advice. Thank you!


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## joplin1975 (Jul 21, 2011)

If I were in your shoes, I would consider getting a total thyroidectomy. That's a large nodule and the other "smaller" nodules are big enough to merit complete removal.

Do you have any blood work results to share? Did they test thyroid antibodies?


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## nawal (Jun 7, 2017)

Thank you, joplin1975! I feel like I should ask for total removal
Here are the results I was given:

FREE T4 1.0 reference range 0.8-1.7
Thyroid period ab 0.4 Reference range 0.0-9.0
Thyroidgobulin ab <0.9 reference range 0.0-4.0
TSH 3.57 reference range 0.30-3.94

My doctor didn't explain the results very well so if anyone has any input, please feel free to share!


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## joplin1975 (Jul 21, 2011)

Well, you barely have any antibodies, which is interesting. One would assume either an autoimmune condition (measures by TPO) or cancer (usually indicated by Tg/TgAB).

Regardless, your TSH is too high (should be closer to 1.0) and your free t4 is too low, so you are hypo. That would explain your symptoms.

Most people who have half or more of their thyroid removed need to be on medication. It's just usually at a lower dose than folks who have their entire thyroid removed. I don't see, in your case, what you'd gain by keeping any of the thyroid, especially if you are really good at growing pesky nodules.


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## Lovlkn (Dec 20, 2009)

I would ask for a complete thyroid removal. Makes it much easier to stabilize on thyroid hormone replacement post TT.



> FREE T4 1.0 reference range 0.8-1.7


You are really hypo - goal is to fall somewhere between ((1.25-1.475))


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## nawal (Jun 7, 2017)

joplin1975 said:


> Well, you barely have any antibodies, which is interesting. One would assume either an autoimmune condition (measures by TPO) or cancer (usually indicated by Tg/TgAB).
> 
> Regardless, your TSH is too high (should be closer to 1.0) and your free t4 is too low, so you are hypo. That would explain your symptoms.
> 
> Most people who have half or more of their thyroid removed need to be on medication. It's just usually at a lower dose than folks who have their entire thyroid removed. I don't see, in your case, what you'd gain by keeping any of the thyroid, especially if you are really good at growing pesky nodules.


Thank you for helping me understand my results! It's interesting that you say my antibodies are low. I'm actually going to speak with my doctor to be tested for lupus, it runs in my family and so does a slew of other autoimmune diseases (lupus, celiac, hypo, RA)

I may need to look for another doctor. Mine says my thyroid levels are completely normal. But my surgeon thinks otherwise, he says I am on the brink of hypo. I'm going to discuss the possibility of just having the entire thyroid removed, I think it would be better and it also means I can begin the journey to see what levels of medication will work to replace the hormones. I truly appreciate you taking the time to respond to my thread and your helpfulness!


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## Lovlkn (Dec 20, 2009)

Be sure to ask for both Free T-4 and Free T-3 lab's post surgery. You will need to fall in the 1/2-3/4 range for BOTH those lab's to feel your best. TSH should not be used to adjust thyroid hormone replacement medications - the Free Thyroid hormone tests should both be used instead - although many doctors will insist on using TSH.

You will need to advocate for yourself to be properly medicated - sad but true.


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## nawal (Jun 7, 2017)

Lovlkn said:


> I would ask for a complete thyroid removal. Makes it much easier to stabilize on thyroid hormone replacement post TT.
> 
> You are really hypo - goal is to fall somewhere between ((1.25-1.475))


Thank you so much! I have almost every single symptom of hypo and yet even after seeing the test results, my doctor still says my levels are normal. I've been with her for years but I'm beginning to think I need to look elsewhere. I was hoping after this surgery things would begin to even out but if they don't want to put me on meds once it's done, nothing is going to change.


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## nawal (Jun 7, 2017)

Lovlkn said:


> Be sure to ask for both Free T-4 and Free T-3 lab's post surgery. You will need to fall in the 1/2-3/4 range for BOTH those lab's to feel your best. TSH should not be used to adjust thyroid hormone replacement medications - the Free Thyroid hormone tests should both be used instead - although many doctors will insist on using TSH.
> 
> You will need to advocate for yourself to be properly medicated - sad but true.


Your last line resonated very much with me. I haven't felt 'normal' for years and despite numerous tests, I'm told that everything is fine. Obviously it's not if nodules are growing out of control and I have unchecked symptoms of hypo. I have a pre surgery appt with my doctor on Friday, I'm going to talk to her then. I appreciate you taking the time to respond and for your help and guidance.


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## Lovlkn (Dec 20, 2009)

Post TT, I saw 3 different endo's, all wanted to dose me by TSH, then I went to 2 GP's who worked with me for awhile but got spooked because I have antibodies that suppress my TSH and after about 1 year they both freaked and wanted to cut my dose. A friend had just gotten diagnosed for Graves disease by a OD ( osteopathic Doctor) who was treating her so I made an appt with him - thankful that since 2009 he has never dosed me by TSH and only follows Free T-4 and Free T-3.

There are doctors out there who "get it" , unfortunately , you may have to see several before finding one.


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