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Old 05-04-2013, 04:20 AM   #1
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Question Am I the Only One With Unsuppressed TSH?

I had a total thyroidectomy & 12 lymph nodes removed 4/2012. 4 lymph nodes were malignant & primary nodule was 2.6cm at age 53, so I was diagnosed with stage 4 papillary carcinoma, follicular variant.

Here's the weird thing...my T4 was running 2.3 and is now 1.8 after going from 150mcg to 137mcg in the past 2 months, BUT my TSH has never suppressed close to zero. I think the lowest it got was .35; the last value was .8 and it is now 1.36 I was up at 175mcg levothyroxine previously & my last thyroglobulin went up a little, but my doctor said it was in relation to the T4 or TSH value being higher.
At my 6 month ultrasound, a 3cm lymph node was biopsied & they did a thyroglobulin wash that came out ok, but the lymph node is still enlarged on my ultrasound last month. Being hyperthyroid, made me feel hypothyroid, like a block of cement and I could not function whatsoever. I feel a little difference now that I'm on 137 mcg, but the real concern is that my TSH won't suppress and my doctor reached out to various thyroid specialists and none of them have any answers and do not have any patients in this predicament. I know I'm concerned, but when your doctor is really concerned, then it's really scarey. The only possibility the other specialists came up with was if someone stopped taking thyroid hormone and then doubled up on it, this could possibly happen. I have never missed a dose and would be afraid to ever double anything and I'm very diligent about all my medications and take them exactly as I'm supposed to. All I could do is cry because I'm doing everything I'm supposed to. I always seem to be the complicated patient who reacts the wrong way to things or is the exception to the rule, but the cancer issue is a little daunting. Has anyone heard of this happening or does anyone have any feedback?

 
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Old 05-04-2013, 07:04 PM   #2
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Re: Am I the Only One With Unsuppressed TSH?

You can try other thyroid meds, either add a little cytomel (t3) that would suppress, or tirosent, which has less issues in terms of absorption. Free t4 isn't enough to determine hyper, you would want more testing.

What is your free t3 level? I would want them to monitor that in combination to determine if you were really experiencing hypo or hyper symptoms. Also, when I was being kept very suppressed, my endo. offered beta blockers if I wanted to reduce hyper symptoms, which you can do if you want to be kept more suppressed. You aren't being kept at a super high dose at this point.

 
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Old 05-05-2013, 02:56 PM   #3
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Re: Am I the Only One With Unsuppressed TSH?

I agree with adding the cytomel. That will help lower your TSH, without messing with the F T4. Sounds like the perfect solution to me! I am surprised your endo didn't think of that. Also, many of us have to be on a beta blocker because of being on a high dose of levothyroxine.

 
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Old 05-11-2013, 06:31 AM   #4
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Re: Am I the Only One With Unsuppressed TSH?

Thank you both for your suggestions. My doctor put me on propranolol 20mg, which I take twice a day, so my heart rate is running about 94 resting now & the palpitations have calmed down. She is not testing my free T3, nor has she mentioned cytomel. I am going to fax her questions about this on monday. I go for a full physical w/ the internal medicine doc Friday & she works in the same medical group as my endocrinologist, so I will ask her if she can add the tests to see where I am & see if she might add the cytomel if I don't get an answer sooner. At least she has access to all my labs.
My endo did mention Tirosint when I was having thyroid storm, but I've stayed w/ the levo generic for cost reasons since I already have so much medical expense, making sure its the same manufacturer. My doc seemed to want to keep me at 175 mcg, but I begged her to lower it, hopefully, not to my detriment.

What other tests should I ask for? What level should my T3 be? what values are considered hypo vs hyper for free T3?
Thanks for the info!

 
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Old 05-11-2013, 09:29 AM   #5
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Re: Am I the Only One With Unsuppressed TSH?

Quote:
Originally Posted by verycomplicated View Post
Thank you both for your suggestions. My doctor put me on propranolol 20mg, which I take twice a day, so my heart rate is running about 94 resting now & the palpitations have calmed down. She is not testing my free T3, nor has she mentioned cytomel. I am going to fax her questions about this on monday. I go for a full physical w/ the internal medicine doc Friday & she works in the same medical group as my endocrinologist, so I will ask her if she can add the tests to see where I am & see if she might add the cytomel if I don't get an answer sooner. At least she has access to all my labs.
My endo did mention Tirosint when I was having thyroid storm, but I've stayed w/ the levo generic for cost reasons since I already have so much medical expense, making sure its the same manufacturer. My doc seemed to want to keep me at 175 mcg, but I begged her to lower it, hopefully, not to my detriment.

What other tests should I ask for? What level should my T3 be? what values are considered hypo vs hyper for free T3?
Thanks for the info!
When my T3 was done, it was low---61. Normal is 76-181. Usually people with thyroid cancer don't think about that much, unless they feel very tired---when the body isn't converting the T4 to T3. My endo was not the one who tested this and didn't even know my numbers. She readily put me on cytomel, when I said I felt tired. I would like to take it twice a day, but I know I would never remember, and that would affect my TSH if I wasn't consistent.

One of the most important indicators is TG---Thyroglobulin. Were you taken off synthroid for a whole body scan and TG test? What was your TG then?

What is it while you are on Synthroid (suppressed). The issue with taking generic is that it can be off in strength by 10%. And, every time you get it refilled, you could be getting a different manufacturer. I take it you don't have prescription coverage. If you go to the Synthroid site, there are usually coupons.

 
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Old 05-24-2013, 01:37 AM   #6
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Re: Am I the Only One With Unsuppressed TSH?

Thanks Reece,
I am going to ask for a free T3 test, since I haven't had one and talk about adding Cytomel. I will fax my doctor tomorrow. My internist read the notes from my last appt. w/ the endo. & she wants to raise my levo dosage at the next appt. in July.

I tried synthroid & I might be allergic to the dye in it or something but I was on fire and had migraines. I make sure the manufacturer of the levo is always the same.
I wouldn't be surprised if my body wasn't converting correctly b/c my pain specialist said my body is converting codeine to morphine on urine testing. My body seems to react oppositely alot of the time. I've been told by my allergist that I have beta receptor polymorphism which when using albuterol for an asthma attack, it closes me up further. I guess I'm wired backwards, haha

 
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Old 05-24-2013, 02:02 AM   #7
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Re: Am I the Only One With Unsuppressed TSH?

Thanks Linda--
do you get a total T3 or free T3? which one has the results you're talking about?
I never had a WBS or I-131 & started levothyroxine right when I discharged from the hospital. The surgical oncologist wanted me to have both and the endocrinolgist I already see, said there wasn't much difference in the outcome(even with stage 4 papillary, follicular variant), so she didn't want to do either & she'd rather follow me closely.My endo said my Tg should be under 2 and the 1st one 6 wks after surgery was .39; free T4 was 1.85 & TSH was 1.6 & should be less than .1
levo was raised to 150 & Sept values after 6wks on 175mcg: free T4 2.76;
TSH .056; Tg .14 In Nov., free T4 1.8, TSH .18--had no quality of life & decreased levo to 150. In march free T4 was 2.34, TSH was .80 & Tg was .22 on the 150 dose--still felt awful so dropped to 137mcg and my april #'s were 1.8 and TSH 1.36. Crazy, huh?

Synthroid caused thyroid storm, migraines & I was on fire. Tirosint was going to cost close to $100/mo. and I already have costs in the hundreds for RX's & medical supplies even with an RX plan.
Your suggestions are very helpful and I will be faxing my doctor to ask about testing & cytomel--thanks so much!

 
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Old 05-24-2013, 11:04 AM   #8
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Re: Am I the Only One With Unsuppressed TSH?

Quote:
Originally Posted by verycomplicated View Post
Thanks Linda--
do you get a total T3 or free T3? which one has the results you're talking about?
I never had a WBS or I-131 & started levothyroxine right when I discharged from the hospital. The surgical oncologist wanted me to have both and the endocrinolgist I already see, said there wasn't much difference in the outcome(even with stage 4 papillary, follicular variant), so she didn't want to do either & she'd rather follow me closely.My endo said my Tg should be under 2 and the 1st one 6 wks after surgery was .39; free T4 was 1.85 & TSH was 1.6 & should be less than .1
levo was raised to 150 & Sept values after 6wks on 175mcg: free T4 2.76;
TSH .056; Tg .14 In Nov., free T4 1.8, TSH .18--had no quality of life & decreased levo to 150. In march free T4 was 2.34, TSH was .80 & Tg was .22 on the 150 dose--still felt awful so dropped to 137mcg and my april #'s were 1.8 and TSH 1.36. Crazy, huh?

Synthroid caused thyroid storm, migraines & I was on fire. Tirosint was going to cost close to $100/mo. and I already have costs in the hundreds for RX's & medical supplies even with an RX plan.
Your suggestions are very helpful and I will be faxing my doctor to ask about testing & cytomel--thanks so much!
The values were for a total T3. You must be outside of the US, because I don't know about Tirosint! That is very interesting that your endo didn't think you needed RAI. Refresh my memory on the size of the tumor. From my understanding, the surgeon isn't able to get the "remnants" of the thyroid, thus the need to get rid of (ablate) what is left.

 
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Old 05-24-2013, 11:10 AM   #9
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Re: Am I the Only One With Unsuppressed TSH?

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Originally Posted by Linda1652 View Post
The values were for a total T3. You must be outside of the US, because I don't know about Tirosint! That is very interesting that your endo didn't think you needed RAI. Refresh my memory on the size of the tumor. From my understanding, the surgeon isn't able to get the "remnants" of the thyroid, thus the need to get rid of (ablate) what is left.
OK...I read back to your first post. The reason they want us to take the real Synthroid is to avoid issues like yours. I may have already said that in another post. I am too lazy to go back again. The generics can be up to 10% off.

In the US, because of the lymph node involvement, you would get at the minimum 150 RAI. I only got 100, because my endo wasn't thinking clearly!! In the US you would have RAI---no questions asked. The only time they don't give it if the tumor is less than 1 cm with no lymph node involvement.

 
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Old 05-26-2013, 01:35 AM   #10
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Re: Am I the Only One With Unsuppressed TSH?

my primary tumor was 1.6cm w/ 4 involved lymph nodes and I know what you're saying about treatment, as that's what I've read but, here's what my doctor said, coming from USC in Los Angeles. she said anywhere else in the nation, I would have treatment, they (USC) is the only place currently thinking that there is not that much difference in the outcome. maybe that's the case for my stage4 papillary carcinoma, follicular variant, I don't know. (maybe I have too many other medical conditions that might compromise things?)That's all I can remember, as she said it's something that will be followed closely and the TSH suppression was very important, along w/ the Tg results. At least that's my understanding.
I hope I'm in good hands...

 
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Old 05-26-2013, 07:55 AM   #11
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Re: Am I the Only One With Unsuppressed TSH?

Quote:
Originally Posted by verycomplicated View Post
my primary tumor was 1.6cm w/ 4 involved lymph nodes and I know what you're saying about treatment, as that's what I've read but, here's what my doctor said, coming from USC in Los Angeles. she said anywhere else in the nation, I would have treatment, they (USC) is the only place currently thinking that there is not that much difference in the outcome. maybe that's the case for my stage4 papillary carcinoma, follicular variant, I don't know. (maybe I have too many other medical conditions that might compromise things?)That's all I can remember, as she said it's something that will be followed closely and the TSH suppression was very important, along w/ the Tg results. At least that's my understanding.
I hope I'm in good hands...
That is sooooo interesting. I had been reading that the current thinking is to not retreat people who still have TG. When I first got thyroid cancer, most Doctors would have retreated me because I have low level TG. I actually went to a conference to pick the brains of the experts to find what they would do. None would retreat me unless it started increasing. Then, I read an article (study) by one of the leading east coast experts. He said the side effects of the RAI may not be worth the treatment. There are a lot of people with thyroid cancer who insist on treatment. I did NOT want to have another if I didn't have to.

I think the USC way makes a LOT of sense. They can give you RAI if and when your tests show TG. Smart people there....

 
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Old 05-27-2013, 03:01 AM   #12
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Re: Am I the Only One With Unsuppressed TSH?

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That is sooooo interesting. I had been reading that the current thinking is to not retreat people who still have TG. When I first got thyroid cancer, most Doctors would have retreated me because I have low level TG. I actually went to a conference to pick the brains of the experts to find what they would do. None would retreat me unless it started increasing. Then, I read an article (study) by one of the leading east coast experts. He said the side effects of the RAI may not be worth the treatment. There are a lot of people with thyroid cancer who insist on treatment. I did NOT want to have another if I didn't have to.

I think the USC way makes a LOT of sense. They can give you RAI if and when your tests show TG. Smart people there....
Thank you Linda--You are the first person to finally make me feel like I'm not crazy for not having treatment. You have no idea how much stress & concern you have lifted off my shoulders! I am so thankful for your post back to me. I do have concerns about the long term issues from treatment & the expense, so I guess Ill calm down for now.

 
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Old 05-27-2013, 08:38 AM   #13
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Re: Am I the Only One With Unsuppressed TSH?

I forgot to mention that RAI is not effective for eradicating thyroid cancer in the lymph nodes. Your primary was quite small, so I can truly understand their thinking.

The treatment has really evolved since I was first diagnosed in 2005. I didn't mention my sister had it in 1997. She had to be hospitalized for her first treatment. At that time, the low iodine diet prior meant eating very few items, for 6 weeks. It was total torture. Now, we basically avoid dairy for 10 days. We can eat most things that don't have salt added. They've come a long way, but I feel bad for the folks who were guinea pigs. There was a doctor who was the main advisor to the largest group of thyroid cancer patients. His big push was repeated RAI's at the largest dose possible. Can you imagine the people with the fried tear ducts and salivary glands? Finally, they stopped quoting him in that group, due to my constant argument that he did not participate in their conferences or agree with the doctors who advised at conferences. So, from the beginning, I started to question RAI,particulary when it's not effective for lymph nodes. They can tell from a person's tg level where the thyroid cancer is hiding (microscopic). With low level, that means lymph nodes. I have read about many people out there who have had repeated RAI's---which of course didn't work to lower their TG to undetectable-- because the cancer was in their lymph nodes! There are guidelines that the Doctors follow, so they can't be completely blamed. I do like how USC is thinking outside the box. You are not crazy...you are saving your salivary glands and tear ducts. I don't know if I told you my neighbor had to have surgery on her tear ducts, due to an additional RAI. The weird thing is, her endo is my husband's DR. I asked him if he would retreat me, and he said it would take a nuclear bomb to get rid of what was left in me, after the first RAI. Then, he eats his words and retreats my neighbor. I will probably never know if it did work this time, because she doesn't know her levels---ever!! Glad I could help....that is why I am here. I know what it's like at the beginning!

 
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Old 05-29-2013, 06:35 PM   #14
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Re: Am I the Only One With Unsuppressed TSH?

Hi Linda

Your posts have been invaluable and I am going to fax my doctor today w/ various posts. There are alot of scared people out there and they all need support & information. I worked for the American Cancer Society in the 80's, so I had some fast info, but we never focused on thyroid cancer and I ran the education programs/activities like great american smokeout/smoking cessation groups, breast self exam, diet & colorectal cancer, etc. Many don't know what questions to ask & docs don't have the time to educate & answer tons of questions or give all the details, in addition to having many different personalities...

I like my endo., as she tries to explain but sometimes all the details don't stick w/ me even though I'm a very detailed person (or was in past years).

I will let you know what I find out from my endo. Thanks so much!

Last edited by moderator2; 05-29-2013 at 06:38 PM. Reason: posted disallowed websites

 
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Old 05-29-2013, 08:56 PM   #15
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Re: Am I the Only One With Unsuppressed TSH?

Quote:
Originally Posted by verycomplicated View Post
Hi Linda

Your posts have been invaluable and I am going to fax my doctor today w/ various posts. There are alot of scared people out there and they all need support & information. I worked for the American Cancer Society in the 80's, so I had some fast info, but we never focused on thyroid cancer and I ran the education programs/activities like great american smokeout/smoking cessation groups, breast self exam, diet & colorectal cancer, etc. Many don't know what questions to ask & docs don't have the time to educate & answer tons of questions or give all the details, in addition to having many different personalities...

I like my endo., as she tries to explain but sometimes all the details don't stick w/ me even though I'm a very detailed person (or was in past years).

I will let you know what I find out from my endo. Thanks so much!
I worked for the ACS after I retired from teaching in 2008. I think because I "survived" thyroid cancer they figured I could work with people in the infusion center, telling people about the services they offered. I did it about a year--then I was glad to stop. It was just so painful.

I didn't tell you there was a woman I encountered who had TG of 45. She had a third RAI, and now has leukemia. I know it doesn't happen often, but some people have a predisposition--like my sister and myself. We got thyroid cancer after having radiation to our faces for acne in the 60's.

 
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