The THYROID Thread

[mrsklamc]

Funny you should ask. After having almost no trouble at all, this week has been miserable emotionally and I think exhuastion is to blame as I cannot seem to sleep.

 

[es45]

Funny you should ask. After having almost no trouble at all, this week has been miserable emotionally and I think exhuastion is to blame as I cannot seem to sleep.

Like Christine, the sleep meds don't work for me; often, they make the situation worse.

Keeping my fingers crossed that a good sleep will come for both of us tonight.

 

[mrsklamc]

I was VERY anxious before my surgery and got some ambien. I took one the night before last and it did help, but I didn't take it last night.

 

[kathleena]

Just out of curiousity, does anyone know offhand what they state as the cost of RAI? (i.e. my surgery pre-insurance was listed at 30 or 40 thousand dollars.)

I'm wondering what the cost of a scan is because I am thinking of going with a high deductible health plan. I know it sounds crazy but I think I will be spending quite a bit out of pocket anyway and there IS an out of pocket maximum that we do have the ability to cover.

That sounds crazy. My DH had pituitary surgery by one of the top surgeons in the world and the hospital bills were around $20,000 and the doc himself was $6,000. I would just doubt something as relatively common as RAI would be more than brain surgery. Or are you saying that thyroid surgery is that expensive? Still sounds like a lot to me!

 

[kathleena]

To everyone posting about sleep etc I had always thought my awful sleep patterns were a result of menopause and thyroid issues but have recently found out that they are a result of low levels of serotonin.

Apparently, since somewhere around my late 40s I have probably had dropping levels of serotonin and then in times of stress it drops them even more (because they get used up faster) and I end up with more anxiety, less sleep and a host of other issues that I also thought were menopause related.

So now on meds for serotonin (translated - something like Prozac) a very low dose, and within two nights I"m sleeping 8-9 hours almost straight through, just one wake-up last night and I got right back to sleep.

This has happened off and on for 10 years and I tried several different sleep meds like Ambien with no relief. Hoping this will do more for me.

Anyway - just trying to say - it may not be the thyroid doing it!

 

[angwill]

That sounds crazy. My DH had pituitary surgery by one of the top surgeons in the world and the hospital bills were around $20,000 and the doc himself was $6,000. I would just doubt something as relatively common as RAI would be more than brain surgery. Or are you saying that thyroid surgery is that expensive? Still sounds like a lot to me!

Is this after your insurance paid? I worked in a hospital and brain surgery for $26,000 is unheard of where I live. I would say it would be more like $260,000 around here if not more.

 

[ceemys]

I just had my level checked again...after 6 weeks of being on 100mcg, my level is still super low at 18! SO frustrating.

 

[MariDisney]

That sounds crazy. My DH had pituitary surgery by one of the top surgeons in the world and the hospital bills were around $20,000 and the doc himself was $6,000. I would just doubt something as relatively common as RAI would be more than brain surgery. Or are you saying that thyroid surgery is that expensive? Still sounds like a lot to me!

I thought I'd post the price of my recent surgery in light of this line of discussion. I had a total thyroidectomy in February with a 1 night hospital stay in the Philadelphia suburbs. The hospital cost was $9500 and the surgeon's cost was $2450. Since I have insurance (Aetna) they paid their "agreed upon rate" which was $7300 and $900. I haven't seen anything from the anesthesiologist yet, but I'm pretty sure that will be an additional billing.

 

[luvmarypoppins]

Well this week I went for a sonogram. All I can say is with a left neck dissection a sonorgram on that side really hurts!!

Sat. I went for the blood test and I think in 2 weeks I have an endo visit. So I am praying she will say the levels are not measurable for the thyroglobulin.

I see the rad. onc. in april. I guess we will discuss the lid and scan for may. Oh what Fun!!

I nvever see those bills. I did get one by mistake for surgery #3 from ent surgeon #2 who saved my life when the jugular vein burst. I think he got like around $1200 for 3 hours of work. But then saving my life...that was priceless. I have so much to thank God for.

Just wondering, how often do you get a sonogram. I think she said the blood tests will always be every 3 months?

 

[Christine]

Just wondering, how often do you get a sonogram. I think she said the blood tests will always be every 3 months?

Yearly sonogram.

Thyroglobulin two times per year.

TSH two times per year.

TSH used to be 4 times per year but I've been SOO stable for many years now that we only do it twice a year.

 

[mrsklamc]

In addition to the thyroidectomy I had a radical neck dissection; the surgery itself took about 5 hours. We didn't pay $40k, just our deductble of 3k.

 

[kathleena]

Is this after your insurance paid? I worked in a hospital and brain surgery for $26,000 is unheard of where I live. I would say it would be more like $260,000 around here if not more.

It was the billed rate from the hospital and the doctor, before the insurance adjusted for their negotiated rate. I think their rate to the doc ended up being around $1700, but I can't remember the hospital total. We paid far less than that as we had an annual max of $6000 for the family. Oh and I had a typo, the hospital billed for $28,000.

When we had the consultation with the doc, his assistant had given us an estimate of $50,000. The surgery was at Mass General in Boston. Like I said - pituitary surgery - he is a neurosurgeon and all he does is pituitary. There was only one night in the hospital.

 

[nmmom95]

Hi! I'm new here. I am having a partial thyroidectomy in a couple of weeks. I If it is found to be cancer, they are going back in to remove the other half. I have other health issues (kidney failure and an autoimmune), so the doctor thought this would be less traumatic for me. I'm really scared.

Thanks to mrsklamac for telling me about this board.

 

[luvmarypoppins]

O.K. This might be a dumb question, but heah I plead thy ca newbie status, I am still learning I guess.

If I just had the sonogram (2nd one, since I had one in Aug. I think)

Would the sonogram give an accurate picture if the remnant is still there or since its been a year since the RAI next month would the sonogram show if the remnant was gone

and which is the better indicator, I am assuming the thyroglobulin with hopefully unmeasurable readings.

I havent heard from my endo, but I know she said last time, oh I didnt call you because I see you were coming in etc. I guess I should ask her how she disseminates information whether good or bad etc. I dont iknow whats worse, hearing bad news in person or over the phone if I ever had to deal with that again. I did both.

 

[mrsklamc]

Hi! I'm new here. I am having a partial thyroidectomy in a couple of weeks. I If it is found to be cancer, they are going back in to remove the other half. I have other health issues (kidney failure and an autoimmune), so the doctor thought this would be less traumatic for me. I'm really scared.

Thanks to mrsklamac for telling me about this board.

It sounds like your case is very unique because of your other health issues. They did a biopsy and felt it was inconclusive?

I don't know about your other health issues, but if they didn't exist, I'd say go ahead and have the total thyroidectomy done. It's really not too bad. The right half of my thyroid looked 'perfect' and my doctor said it used to be that they would have left it in, but that they found that if one half of the thyroid was cancerous the other side usually got around to being that way, too. I'm not a doctor at all, but I guess I'm just saying...unless you are 100% comfortable with that course of treatment, I would suggest getting a second opinion. I know nothing about your other health conditions but I know if I had it to do over again I would fight my first endocrinologist tooth and nail, instead of giving in like I did to treatment that wasn't really what I wanted to do.

 

[jennz]

Hi! I'm new here. I am having a partial thyroidectomy in a couple of weeks. I If it is found to be cancer, they are going back in to remove the other half. I have other health issues (kidney failure and an autoimmune), so the doctor thought this would be less traumatic for me. I'm really scared.

Thanks to mrsklamac for telling me about this board.

I'm guessing they're doing this to leave part of the thyroid in if at all possible. Having part of your thyroid is better than having none.

I had the same situation, inconclusive biopsy - they did a frozen cell during my surgery and would have removed the whole thing if it came back positive. The frozen cell biopsy gives them quick results while they are doing surgery. Are they not doing the frozen cell biopsy during your surgery? I thought that was protocol. Unfortunately it does not show the cancer 100% if the time, and so when they sent mine out they found that it was indeed cancer and I had to have a second surgery.

O.K. This might be a dumb question, but heah I plead thy ca newbie status, I am still learning I guess.

If I just had the sonogram (2nd one, since I had one in Aug. I think)

Would the sonogram give an accurate picture if the remnant is still there or since its been a year since the RAI next month would the sonogram show if the remnant was gone

and which is the better indicator, I am assuming the thyroglobulin with hopefully unmeasurable readings.

I havent heard from my endo, but I know she said last time, oh I didnt call you because I see you were coming in etc. I guess I should ask her how she disseminates information whether good or bad etc. I dont iknow whats worse, hearing bad news in person or over the phone if I ever had to deal with that again. I did both.

I don't know about the sonogram, I've never had one although see quite a few people mention them on this thread. I always have an uptake, where you take the radioactive iodine.

My endo always gets excited about the thyroglobulin so I'm guessing that the better indicator, but am not sure either. I'm not much help!

I would definitely ask to get a call with your results. So what if you're coming in soon? Waiting for results is hard! I'd rather know than keep waiting. Just my opinion.

 

[nmmom95]

It sounds like your case is very unique because of your other health issues. They did a biopsy and felt it was inconclusive?

I don't know about your other health issues, but if they didn't exist, I'd say go ahead and have the total thyroidectomy done.

They said the biopsy was suspicious and that it is cancer about 20% of the time. I would prefer it be taken all at once, but the surgeon wants to go this route because of my health issues.

I'm guessing they're doing this to leave part of the thyroid in if at all possible. Having part of your thyroid is better than having none.

I had the same situation, inconclusive biopsy - they did a frozen cell during my surgery and would have removed the whole thing if it came back positive. The frozen cell biopsy gives them quick results while they are doing surgery. Are they not doing the frozen cell biopsy during your surgery? I thought that was protocol. Unfortunately it does not show the cancer 100% if the time, and so when they sent mine out they found that it was indeed cancer and I had to have a second surgery.

The surgeon said that they usually do the frozen cell biopsy during surgery and remove the entire thyroid, if necessary. I am going to be a little different, since I am on dialysis. I really don't want to do this twice, though.

 

[luvmarypoppins]

Hi! I'm new here. I am having a partial thyroidectomy in a couple of weeks. I If it is found to be cancer, they are going back in to remove the other half. I have other health issues (kidney failure and an autoimmune), so the doctor thought this would be less traumatic for me. I'm really scared.

Thanks to mrsklamac for telling me about this board.

Just wanted to say welcome and wishing you all the best with your upcoming surgery.

 

[nmmom95]

Just wanted to say welcome and wishing you all the best with your upcoming surgery.

Thanks! I hope you get good results!

 

[luvmarypoppins]

Well today was my endo visit. Praise God I got such a good report.

She said, the sonogram was just great and the remnant was gone, so the RAI killed it all.

The thyroglobulin is undetectable and the TSH is about 0.1.

She is keeping me on the high level of synthroid for at least another year so she said "thats where we like to have it with all our thy ca pts". So its a little hyper me and maybe some heeart palpatations.I havent really noticed those that much.

She said she is sending the rad onc. an e mail and feels I dont need a 1 year scan. Hmm, I thought that was like mandatory or required? I didnt want to get into that with her as I think the rad. onc. has the final say, but here you have a cancer team in the whole hosp. system, the surgeon, rad. onc. and endo together etc. So she also mentioned about just getting the 2 thyrogen shots and getting a blood test. I dont know if that is another option or will be done in addition to the probable scan etc.

She also said that if there was a recurrence it would likely occur in the first year post op? Hmm, has anyone heard of that comment before? Even my surgeon never said that to me etc.