Had TT on 6/20/10 ... some issues I would like your advice

[carol9999]

Hi ... I had a TT 6/20/10 Quick history:

I was having a MRA/MRI done for my brain/neck for another reason. The docs found the 1.5 cm nodule on my left thyroid. My thyroid levels were normal and I did not feel or see anything, so would have never known if didn't have the MRA. I went to endo and they did ultrasound and FNA. They said it was highly vascular and the results ended up being inconclusive, but possible malignancy. The surgeon at Memorial Sloan Kettering at NYC said the pathology there suggested that it was suspected cancer and we decided to take the whole thing out, which was the right decision because the final pathology of the 1.9cm nodule was "papillary carcinoma, follicular varient". Both lymph nodes they took out were benign. He says it looks like they got it all.

They put me on 125 of Synthroid the day after surgery. I am 130-135lbs.

Now here are my questions/concerns:

1) my voice is still hoarse and weak.. seems to be getting better tho.. surgeon says that it sometimes takes weeks .. I don't mind it taking a while, but I do want my voice back to a normal speaking voice . Seems like a lot of people get it back within a few days, so I am a bit worried almost 2 weeks out. Is this common problem?

2) I went to ER the Friday after the surgery because seems like one pupil is different size from another (small difference)... they did CT scan with contrast and came up with nothing. Went to my neurologist the following week and he suggested possibly Horner's Syndrome as a complication of the thyroidectomy, but when I mentioned it to the surgeon, he said he was nowhere near the nerve that would give me that problem. Does anyone have this?

3) My blood pressure has been a bit elevated .. When they took it in ER (4 days after surgery) it was about 140ish over 90ish I think but I figure that could be from being nervous that something was wrong. Then when I went to neurologist about a week later, it was upper 130's over upper 80's. Then when I went to post op visit at surgeon a day later it was upper 130's over low 80's. I never had high or elevated blood pressure before. Could this be a post surgery problem that will go away with time?... I haven't checked my blood pressure since then, which was 3 days ago.

4) Although I have been headache free the past 2 days, before that I was getting headaches almost every day since the surgery. I do have problems with migraines etc, but was wondering if it is common problem to have headaches post surgery while your body is recovering... remember I will be 21 weeks post op tomorrow. Other than when I have headaches, I feel pretty good.

5) The surgeon said that it is up to my endocrinologist whether she does the RAI treatment. Surgeon said that different people have different philosophies about that. I kind of remember when I asked my endo before surgery if I would have to have the treatment even if it was cancer and I kind of remembering her saying not neccessarily.... I am hoping I won't have to do that, but was wondering what people thought of it in regards to my scenario.

Thanks so much for any answers to my questions.

Thanks

[nasdaqphil]

Hello and welcome. I'll take a stab at a few of your concerns.

1. The voice should return as the doctor indicated. Yes, many folks get their voice back quickly but a whispery, raspy voice is one of the most common side effects of a thyroidectomy. It probably just has to do with people's different anatomy in relation to the thyroid and the vocal chords.

2. I have never heard of this and have never seen a post about this problem with the pupil. If it was in fact a different size, it sounds neurological for sure and most likely unrelated to the thyroid. I can't see a surgeon touching anything that would affect your pupil when doing a thyroidectomy.

3. It is possible that when they extracted your thyroid, some of the thyroid cells entered your blood stream sending you just slightly hyper. Since the physically have to pull your thyroid out through a small hole to remove it, its almost like wringing out a damp sponge but instead of water, your thyroid is filled with thyroid hormone. If that is the case, any extra hormone will wear off in a few days.

4. I know others on here have had problems with headaches so I'll let them chime in about that.

5. RAI is usually protocal after thyroidectomy when cancer is either suspected or confirmed. Personally, I think I would have it. I just would not want to know if the doctor happened to leave a few cancer cells behind by accident. The RAI would destroy any possibility of that. Would you be at peace knowing it is slightly possible they left some bad cells behind that can multiply?

Unless the cancer was absolutely confirmed to a boundary, like a nodule and they are certain they removed that and its surrounding area, I would opt for it and live the rest of your life knowing you are in the clear. Ultimately the choice is between you and your endo. Depending on where the cancer was, the endo might make it mandatory.

[Andros]

Hi ... I had a TT 6/20/10 Quick history:

I was having a MRA/MRI done for my brain/neck for another reason. The docs found the 1.5 cm nodule on my left thyroid. My thyroid levels were normal and I did not feel or see anything, so would have never known if didn't have the MRA. I went to endo and they did ultrasound and FNA. They said it was highly vascular and the results ended up being inconclusive, but possible malignancy. The surgeon at Memorial Sloan Kettering at NYC said the pathology there suggested that it was suspected cancer and we decided to take the whole thing out, which was the right decision because the final pathology of the 1.9cm nodule was "papillary carcinoma, follicular varient". Both lymph nodes they took out were benign. He says it looks like they got it all.

They put me on 125 of Synthroid the day after surgery. I am 130-135lbs.

Now here are my questions/concerns:

1) my voice is still hoarse and weak.. seems to be getting better tho.. surgeon says that it sometimes takes weeks .. I don't mind it taking a while, but I do want my voice back to a normal speaking voice . Seems like a lot of people get it back within a few days, so I am a bit worried almost 2 weeks out. Is this common problem?

2) I went to ER the Friday after the surgery because seems like one pupil is different size from another (small difference)... they did CT scan with contrast and came up with nothing. Went to my neurologist the following week and he suggested possibly Horner's Syndrome as a complication of the thyroidectomy, but when I mentioned it to the surgeon, he said he was nowhere near the nerve that would give me that problem. Does anyone have this?

3) My blood pressure has been a bit elevated .. When they took it in ER (4 days after surgery) it was about 140ish over 90ish I think but I figure that could be from being nervous that something was wrong. Then when I went to neurologist about a week later, it was upper 130's over upper 80's. Then when I went to post op visit at surgeon a day later it was upper 130's over low 80's. I never had high or elevated blood pressure before. Could this be a post surgery problem that will go away with time?... I haven't checked my blood pressure since then, which was 3 days ago.



4) Although I have been headache free the past 2 days, before that I was getting headaches almost every day since the surgery. I do have problems with migraines etc, but was wondering if it is common problem to have headaches post surgery while your body is recovering... remember I will be 21 weeks post op tomorrow. Other than when I have headaches, I feel pretty good.

5) The surgeon said that it is up to my endocrinologist whether she does the RAI treatment. Surgeon said that different people have different philosophies about that. I kind of remember when I asked my endo before surgery if I would have to have the treatment even if it was cancer and I kind of remembering her saying not neccessarily.... I am hoping I won't have to do that, but was wondering what people thought of it in regards to my scenario.

Thanks so much for any answers to my questions.

Thanks

I would do the radiation because even if a tiny piece of thyroid is left behind, the thyroid tissue can and does grow back.

That said,"Welcome to the Board!" I am sorry you had to go through this but thank God they did the TT.

A lof of folks don't realize what general anesthetic does to the system. It actually wreaks havoc on folks who have a skewed metabolism. Allow 6 to 8 weeks for it to clear the system and then re-evaluate possible Horner's and any other annoying plus scary symptoms. Drink plenty of water to help your kidneys flush all toxins out.

And, it would be prudent to visit an ophtalmologist for in reality, you could have glaucoma in one eye only or any other myriad of things going on. We cannot safely assume this is connected to your surgery.

We are here for you and wishing you a speedy recovery! You have been through a lot and it does take time for the body to calm down; even the BP.

[hillaryedrn]

Hi ... I had a TT 6/20/10 Quick history:

I was having a MRA/MRI done for my brain/neck for another reason. The docs found the 1.5 cm nodule on my left thyroid. My thyroid levels were normal and I did not feel or see anything, so would have never known if didn't have the MRA. I went to endo and they did ultrasound and FNA. They said it was highly vascular and the results ended up being inconclusive, but possible malignancy. The surgeon at Memorial Sloan Kettering at NYC said the pathology there suggested that it was suspected cancer and we decided to take the whole thing out, which was the right decision because the final pathology of the 1.9cm nodule was "papillary carcinoma, follicular varient". Both lymph nodes they took out were benign. He says it looks like they got it all.

They put me on 125 of Synthroid the day after surgery. I am 130-135lbs.

Now here are my questions/concerns:

1) my voice is still hoarse and weak.. seems to be getting better tho.. surgeon says that it sometimes takes weeks .. I don't mind it taking a while, but I do want my voice back to a normal speaking voice . Seems like a lot of people get it back within a few days, so I am a bit worried almost 2 weeks out. Is this common problem? Yes, very common issue. This comes, not always from the surgery itself, but from being intubated. Also, the recurrent laryngeal nerve can be "stunned" for a bit, but still make a complete recovery. If you are getting better, that is a great sign! Do not strain your voice while you are recovering.

2) I went to ER the Friday after the surgery because seems like one pupil is different size from another (small difference)... they did CT scan with contrast and came up with nothing. Went to my neurologist the following week and he suggested possibly Horner's Syndrome as a complication of the thyroidectomy, but when I mentioned it to the surgeon, he said he was nowhere near the nerve that would give me that problem. Does anyone have this? I haven't heard of this, but I'll research it and let you know what I find.

3) My blood pressure has been a bit elevated .. When they took it in ER (4 days after surgery) it was about 140ish over 90ish I think but I figure that could be from being nervous that something was wrong. Then when I went to neurologist about a week later, it was upper 130's over upper 80's. Then when I went to post op visit at surgeon a day later it was upper 130's over low 80's. I never had high or elevated blood pressure before. Could this be a post surgery problem that will go away with time?... I haven't checked my blood pressure since then, which was 3 days ago. This is common after starting Synthroid. I had very low blood pressure (90's/50's) before surgery, now I am on 150 mcg Synthroid and my pressure is more in the 110's for the top number. Your bp is still good. Just monitor it.

4) Although I have been headache free the past 2 days, before that I was getting headaches almost every day since the surgery. I do have problems with migraines etc, but was wondering if it is common problem to have headaches post surgery while your body is recovering... remember I will be 21 weeks post op tomorrow. Other than when I have headaches, I feel pretty good. I believe the headaches are just your body recovering. I had frequent headaches in the weeks following surgery.

5) The surgeon said that it is up to my endocrinologist whether she does the RAI treatment. Surgeon said that different people have different philosophies about that. I kind of remember when I asked my endo before surgery if I would have to have the treatment even if it was cancer and I kind of remembering her saying not neccessarily.... I am hoping I won't have to do that, but was wondering what people thought of it in regards to my scenario. RAI after TT for carcinoma is the standard of care. I recommend you doing this, just for peace of mind. Just because you had the TT, it is still possible that some thyroid cells remain, and wherever there are thyroid cells, cancer cells can grow. RAI will get rid of any remaining thyroid cells and thus all but eliminate your risk of the cancer recurring.

Thanks so much for any answers to my questions.

Thanks

Hope this helped!! Feel free to ask any questions!

[Lovlkn]

6/20/10

21 weeks post op

A mistake?

Do you have any labs and could you post them with ranges?

I get headaches when my thyroid replacement is too high so I wonder if the nodule may have been causing them?

125mcg is recommended starting dose for a person weighing 150 pounds but that is only a guideline. You should be having lab's every 6 weeks until you feel you atre at the proper dose based on how you feel and your TSH and FT-4 and FT-3 levels.

[carol9999]

Thanks for your help... yes mistake on the weeks.... actually 2 weeks post-op. My thyroid levels pre surgery were normal ( i know my TSH was about 1.2-1.3 range)... dont have any other levels yet post op. I guess I will be meeting with the endocrinologist soon to see what is next. Do you think they will try to get the synthroid adjusted to match my pre surgery levels? It seems to make sense to me, but have never heard anyone talk about that.

I did want to ask another question.... I have read that when you have had thyroid cancer, after the operation, they want to keep your TSH lower than normal? Does that mean that you will be a little hyperthyriod and have all the symptoms that go with that?

thanks again

[nasdaqphil]

They usually try to keep you on the hyper side of normal to supress your TSH but you won't feel a thing. At worst you might feel slightly extra awake but you probably won't even notice that. Hyper symptoms are not good for you either. They're not shooting for hyper, only the hyper side of normal.

[Lovlkn]

Thanks for your help... yes mistake on the weeks.... actually 2 weeks post-op. My thyroid levels pre surgery were normal ( i know my TSH was about 1.2-1.3 range)... dont have any other levels yet post op. I guess I will be meeting with the endocrinologist soon to see what is next. Do you think they will try to get the synthroid adjusted to match my pre surgery levels? It seems to make sense to me, but have never heard anyone talk about that.

I did want to ask another question.... I have read that when you have had thyroid cancer, after the operation, they want to keep your TSH lower than normal? Does that mean that you will be a little hyperthyriod and have all the symptoms that go with that?

thanks again

Carol9999,

YOU need to be the one directing your replacement doses - if you feel poorly then speak up. Get copies of all labs and keep track of them and how you feel. Be sure to insist on your FT-4 and FT-3 in addition to the TSH they run to make sure your body is properly converting. I am interested to hear if you feel best at your pre surgery labs - I never had that opportunity to know where I should be to back to "normal".

I have gone to 3 endo's and 2 GP's and one DO since my surgery 5.5 years ago and feel like I have finally gotten a doctor who is willing to work with me.

Never throw away replacement meds - ever - you never know if you will need to go up or down in dosing and it's nice to have a few extra pills on hand if your doctor is being a pain about writing you a new prescription.

[carol9999]

thanks for all your responses......... I talked to my endo today and she feels maybe my initial dose 125 was too high possibly and therefore making my blood pressure high...so I will be going for bloodtest to check my levels in the next few days........ if it is not that, I don't know why my blood pressure has elevated......never had a problem with this before..I am not overweight, I go to gym (but not since surgery), eat well, dont smoke, so I am really disturbed by the high blood pressure:(


also, don't have my voice back... it is stronger, but still can't project and is still hoarse and raspy.... I hope i get my voice back!

Once I get my new blood levels, I will post them and compare against my thyroid pre surgery levels (which were perfectly normal) thanks again

[hillaryedrn]

I wouldn't worry too much about your bp. It is common for it to elevate slightly after starting Synthroid. It will level back out.

Just remember, don't strain your voice. It is coming back and that is wonderful!! It will continue to get better, just give it time.

Keep us informed!!