# 3 days post op TT



## kikix5 (Jul 29, 2013)

Just a little back ground. I have had some nodules that were being watched for the last 3 yrs, on the first FNA there were hurthle cell changes, so had ultrasounds every year. this year, that same one grew and the FNA came back with only "suspicion for hurthle cell lesion" So between my Endo and the surgeon, thought it best to take the whole things as I had nodules on both sides.

I got the call last night from the endo (who I really don't like and wasn't going to go back to) and he just said, your biopsy was benign and we need to start you on 88 mg of Levothyroxine. I told him that I had heard it was best to stick with the name brand since the generic can change its make up,(actually the endo that I got a 2nd opinion from told me that and actually gave me a script for 100mg synthorid to have on hand if the biopsy was negative) He proceeded to tell me that sometimes insurance co don't pay. He sounded ****ed and then just said he would call it in as synthroid. He didn't tell me anything about the pathology report. So I went and got it today.

It says Thyroid, total thyroidectomy
-mulinodular goiter
-single fragment of parathyroid tissue with no significant histopathologic changes

But then under specimens submitted, it does say, parathyroid glands are not identified. the cut surface is red-brown and focally nodular. the nodules range fro 0.2-1.2 cm in greatest dimension. the nodules are red to pink and contain gelatinous material and cystic areas, (all ultrasounds had shown solid nodules so don't get that either) the larges nodule is present at lower rt lobe and is 2 x 1.2 x 1.2 cm this nodule contains a central scar with calcification. areas of hemorrhage or necrosis are not present. representative sections are submitted in 8 cassettes. the remainder of the specimen is retained.

My question is.. what happened to the hurthle cells, why wouldn't the biopsy say anything about the sort of cells that are within the nodules.
There seems like there should be more to the report.

After looking at posts in the forum, people get another report in a few weeks?

This all confuses me as now I am thinking WTF did I just do?? I will be on meds for the rest of my life. and the report doesn't even say that it was a hurthle cell adenoma, or any type of anything..

I had also had a pet scan do to leg issues and I did have uptake in the thyroid 
any suggestions?


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## Octavia (Aug 1, 2011)

Hello...

While I can't really answer your Hurthle cell question (I think that's a great question for your surgeon or pathologist), I do have a couple of comments/concerns:

- Don't be too afraid to try the generic. Yes, there may be a little more variation from bottle to bottle, and yes, the fillers may be different, but if you're like me and don't have an overly sensitive system, you may do just fine on generics and save a ton of money. I take generic currently, and I've lived to tell about it.

- I'm concerned about your low starting dose. Are you starting at 88 or 100 mcg? Either way, that seems a bit low to start with after a total thyroidectomy, unless you're a pretty tiny, inactive person. How much do you weigh?


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## joplin1975 (Jul 21, 2011)

I can't be helpful on all questions...but I'll try to take a crack at some.

First, I'm not sure I totally buy into the idea that you have to go name brand. Some folks do fine on generics. I started on name brand and stuck with it, so who am I to talk!  I think the more concerning issue is that he started yo at 88mcgs rather than something more appropriate like 100mcgs as the endo did.

With regard to the path report, I got my full report (three pages long) 11 days after surgery at the post-op check up. My did discuss hurthle cell changes consistent with chronic thyrioditis. How long was the path report? I do agree that there should be more in the report. Do you have a follow up scheduled?

I wouldn't be beating yourself up about the decision to move forward with the surgery. Cancer or not, it sounds like those nodules were growing and growing nodules can only cause trouble long term.

As for the uptake in the thyroid area, this is very common. It's almost impossible to remove all thyroid tissue from surgery alone (this is why those of us with cancer have follow up radio active iodine treatments to "clean things up").


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## Andros (Aug 26, 2009)

kikix5 said:


> Just a little back ground. I have had some nodules that were being watched for the last 3 yrs, on the first FNA there were hurthle cell changes, so had ultrasounds every year. this year, that same one grew and the FNA came back with only "suspicion for hurthle cell lesion" So between my Endo and the surgeon, thought it best to take the whole things as I had nodules on both sides.
> 
> I got the call last night from the endo (who I really don't like and wasn't going to go back to) and he just said, your biopsy was benign and we need to start you on 88 mg of Levothyroxine. I told him that I had heard it was best to stick with the name brand since the generic can change its make up,(actually the endo that I got a 2nd opinion from told me that and actually gave me a script for 100mg synthorid to have on hand if the biopsy was negative) He proceeded to tell me that sometimes insurance co don't pay. He sounded ****ed and then just said he would call it in as synthroid. He didn't tell me anything about the pathology report. So I went and got it today.
> 
> ...




As time passes, you will realize you made the right decision. I do think there should be more to that path report, however.

For one thing, calcification is solidification. As to the Hurthle Cells, you do deserve to know.

And you could always get a second opinion on the pathology.


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## kikix5 (Jul 29, 2013)

I am taking the 100mg of synthroid. That is what the 2nd endo prescribed the first one said only 88. I am 138 lbs and I WAS active working out 3xs a week or more.

That really was it on the report. I did call the pathologist but he hasn't returned my call. the surgeon did, and he stated that with FNA they look at the individual cells. with the full biopsy they look at the whole thing. HE said for it to be called Hurthle cell cancer it has to be made up of over 53% hurthle cells. So I guess mine wasn't lol But just weird that it didn't mention anything about any cells really.

The endo that prescribed the 88mg is one those drs that if I told him I was falling asleep by 4pm and gaining weight, if my tsh was normal he would say it wasn't because of my thyroid. He never looked at any other labs, nor ever did any other one but the TSH. I want someone that is going to listen to me and how I am feeling too


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## Mac409 (Jul 22, 2013)

I had a TT on August 7 th. My needle biopsy had show that my nodules would turn to cancer they said. And I had quite a few over 1 ct on both sides. Turned out no cancer. I am on 125 synthroid. Part of me is sorry that I did it even thou everyone says that it would have been cancerous down the line But they don't have to feel like I feel now, which is tired and dizzy. I am very low on iron, so just started iron pills and I guess eventually the tiredness will pass.


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## Lovlkn (Dec 20, 2009)

I want to address the Synthroid vs Generic comment - that's a bunch of baloney.

I am on Unithroid which is generic - not promoted in doctors offices yet readily available if you request it. Chances are others that use your pharmacy will be on it because you are -

I have been on it since 2008 without any issue and it's never been on a recall - it may be the only drug thyroid replacement not having ever been recalled.

A friend who had her TT prior to mine told em about it - she researched the heck out of T-4 replacement and that's why I am on Unithroid.

The mfr recommended dose is 1.7mcg for T-4 meds , your weight converts to 106mcg. Fill both prescriptions - keep them on hand for dose adjustments or if you need to add a bit to get your numbers up into decent range. For several years I had quite a drawer full of different doses - it takes the control out of the doctor withholding medications from you when they decide to dose from TSH alone.

Do not second guess yourself - a thyroid replacement pill isn't a big deal.

Be sure to test your FT-3 and FT-4 every lab and keep a log of doses and any symptoms you may experience.


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## kikix5 (Jul 29, 2013)

Mac409 said:


> I had a TT on August 7 th. My needle biopsy had show that my nodules would turn to cancer they said. And I had quite a few over 1 ct on both sides. Turned out no cancer. I am on 125 synthroid. Part of me is sorry that I did it even thou everyone says that it would have been cancerous down the line But they don't have to feel like I feel now, which is tired and dizzy. I am very low on iron, so just started iron pills and I guess eventually the tiredness will pass.


I am sorry about the low iron, I have just been tired and the pain when swallowing is 10/10, it's like I don't even swallow because it hurts so bad. haven't eaten solid food since sunday night. I'm still taking the pain pills and my first dose of synthroid gave me abdominal cramps so bad. see what happens tomorrow

Thank you Lovlkn I will look into the others, This is all new to me. My hormones were always right in the middle of normal and I just have been going by what others said. Thank you for the info on the generic!!


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## Lovlkn (Dec 20, 2009)

If you are in that much pain - I bet some of it is from the breathing tube. I had a D&C and my throat hurt more then than post TT and it was due to the breathing tube. I specifically request small breathing tubes when I have surgery because of that experience.

That - however does not help you now. Try to stay ahead of your pain and keep taking your pain meds. The abdominal cramping is likely from the pain meds. I've not heard of anyone having abdominal cramping from a thyroid med.

Putting a cold pack on your throat may also help with the pain -


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## kikix5 (Jul 29, 2013)

Well, that pathologist wouldn't call me back but the secretary in the lab did and all she could tell me that my report was the final report, there was nothing else. I called my new endo and faxed them the report. He called me back and asked to see me on Monday. (I think they felt bad as I kept breaking down in tears) I think I have the right to know what actually was found in the biopsy. The full report is:

A. Thryroid, total thyroidectomy:multinodular goiter- a single fragment of parathyroid tissue with no significant histopathologic changes.

A: thyroid, double taill stitch on right superior pole, single tail stitch on left superior pole 
Gross description: Received in formalin, labeled w patients name, number and "thyroid", is a total thyroid glad 15.1 gm, 5.4 x 0.8 x 1.1 cm. Parathyroid glands are not identified. The specimen is received oriented with stitches, double tail stitch at right superior pole and single tail stitch at left superior pole. The outer surface is red, brown and smooth. The entire specimen is inked in black. The cut surface is red-brown and focally nodular. The nodules range from 0.2-1.2 cm in greatest dimension. The nodules are present at the lower poles of the right and left lobes. The nodules are red to pink and contain gelatinous material and cystic areas. The largest nodule is present at the right lower lobe and measures one point by 2 x 1.2 x 1.2 cm. this nodule contains a central scar with calcification. Areas of hemorrhage or necrosis are not present. Representative sections are submitted in 8 cassettes. the remainder of the specimen is retained.
a1-3 entire rt lower lobe nodule with central scar 
a4 entire left lower lobe with nodules
a5 representative section of rt upper pole
a6 representative section of rt mid pole with isthmus
a7 representative section of left upper pole
a8 representative section of left mid pole

I know I did make the right decision of taking the whole thing out. But I would also like to know if there were any hurthle cells in there. that is WHY we took it out.. Am I being overly paranoid, especially having a pet scan that showed uptake in my thyroid

I will also ask the endo Monday about the Unithroid too! 
I just got a paper for labs in the mail from old endo.. lab work he ordered.... just the freakin TSH.. nothing else  can't wait to see what the new endo will order on monday


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## Mac409 (Jul 22, 2013)

I am now on iron pills ..325 and colase. 
I was never low in iron before.I was so tired before I started taking it. I am also still taking cacium and d
I was alway low in D but never took it. I get tingles in my hands and feet if I don't take the calcium ( I started taking the chewable form but I think I am going to go back to the pill form)


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