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Avatar universal

follow up on thyroid issues

Hi Everyone,
I have not been on in a long time due to health issues with self, friends, and family; we are all lucky to be here. I plan to continue to keep you posted because I think it is important that we stay abreast of what goes on with each other post treatment.

Brief recap: Did triple therapy with Incivek beginning in June of last year. Had to stop Incivek at 9.5ish weeks due to severe rash but completed the rest of treatment finishing in December of last year. I had a lot of sides during treatment and some continued post treatment. I SVR'd June of this year. I continue to have rashes when I didn't before (FYI). In September of this year the dentist noticed that my thyroid was enlarged and I went ot my own doctor. He ordered an ultrasound and it revealed that the right side of my thyroid was greatly enlarged (basically it was a 4 cm mass from what I was told at the time). My TSH was in the lower range (2.0) and my t4 was really low. There is no history of thyroid disease in my family. They sent me to a surgeon (it took a few weeks to get an appointment) and he suggested that I have that half of my thyroid removed as soon as possible. I had done my research and was not comfortable with proceeding without more info. I also contacted my hep c doctor (a gastroenterologist and a great one) and we looked at my thyroid function over the course of tx and my thyroid function had declined but not any where near enough to put me on medication (Tsh before tx was 1.6 and went to 2.4 during tx). My TSH had actually improved since finishing tx. My hep doctor said it if was his own thyroid he would not proceed with surgery until seeing an endocrinologist and having a biopsy done. That sounded like good advice. I got my doctor to refer me to an endo who specializes in thyroid cancer 50 miles away. They told me it might take 3-4 months to get in (which scared me) but I have been scared before. They faxed over my labs and the ultrasound and got me an appointment only 6 weeks away (still kinda scary). It was kinda awful waiting but sometimes that is the best thing to do. Bottom Line: the biopsy says the mass is not cancerous. The endo I saw does thyroid surgeries daily but said if this was his thyroid he would leave it alone and not have that half removed. Just continue to monitor it and see what happens. I am going to do that. There is a new endo in my town and I have an appointment to see him so he can do my monitoring in the future (they are scheduling appointments 3 months out so mine is in March). By the way, there is a supposed shortage of endocrinologists out there.  I just got a phone call from my regular doc's office. We redid my thyroid functions tests last week just to see what is happening and my TSH is almost back to where I was pre-treatment at 1.8!

This reason I am posting this here is that I know that many people developed thyroid issues during tx. It is possible perhaps even likely that my thyroid situation was unrelated but the meds we took were so new that I think almost anything that happens afterward should be watched; so this is me just keeping you all posted.  I apologize for the long story but I think there was some important stuff in the telling. Happy holidays to you all! Thank you all once again for getting me through one of the hardest times in my life.
Gerbils
15 Responses
1815939 tn?1377991799
Glad you posted. I think we all need to be aware that things can develop even after we finish treatment. Also, just to repeat, congrats on SVR!  : )  Have a Hep C free great new year.
1669790 tn?1333662595
Hi Gerbils, wonderful story and no need to apologize for the length.  It was well written and very informative.  Good for you for seeking a second opinion -  you got some great advice.  Glad to hear the thyroid issue appears to be resolved and hope you're doing well otherwise.  I recall you having to stop Incivek due to the major rash and you're concern for the outcome.  Congrats to you for the SVR.  This reminds me to get in to see my doc since my Tsh levels were a bit high at the end of trt.  Thanks for posting. :-)
Avatar universal
Thanks Pooh. I am glad to see you are doing well. Same to you on a great new year.
G
Avatar universal
Thanks Fly. As you know we have all seen some strange things come up with thyroid during and (maybe even) after treatment. It is wise to keep an eye on thyroid stuff. Mine was unusual but it is still early in the triple therapy treatment game. I think we will all be better off in the long term but should be mindful of potential issues. Congrats on your treatment success as well. Isn't it funny how much better we all sound, write, and spell, now that we are off the meds? :0)
G
1654058 tn?1407159066
We sound smart! lol. Not like the thick-fingered mouth breather that I was on tx. Im glad to hear it was good news for thyroid. That was scary, i know. We're all kind of holding our breath waiting to see.  
Weird, they've tested mine annually for years. And .... endocrinology is so highly specialized because it includes the entire endocrine system: pancreas, thyroid, parathyroid, ovaries, pituitary, adrenal. all that.. I've seen one for years.
no probs now. Maybe tx fixed it. haha!
548668 tn?1394187222
Congrats on the way you strategised your decisions on getting the biopsy!!

My thyroid acted up a little during tx., but was a little out of whack prior, and my 3.4cm mass which was a 'hot nodule', and was non-cancerous but over-producing hormone and making me hyperthyroid - it had been discovered before tx and was being monitored.   Over the course of a year after tx it went back to normal then reverted - I eventually had to make a choice of having half the thyroid out or having RAI treatment.   My FT4 was top end of normal, my TSH was non-extistent .001, my heart rate and BP were high and it was slowly worsening.

The thyroid site on Medhelp "Thyroid Disorders Community" is excellent, and you'll get some good advice there (also from the "Thyroid Cancer/Nodules & Hyperthyroidism Expert" forum).

I wondered immediately whether your endo had taken any thyroid antibody tests to establish whether there was an auto-immune condition present?   This would give you an idea of whether you may be up against anything ongoing (testing for Hashimotos or Graves disease).

Also, it's a really good idea to get your FreeT4 and FreeT3 done, along with the TSH;  I keep an ongoing record, and now that I'm on meds, it's been invaluable.   TSH fluctuates  and is a signal from the pituitary gland asking your thyroid to adjust the levels of hormone,  FreeT4 is blood levels of hormone, and FreeT3 is what's readily available to your body in the now.   Strange that if your FreeT4 is low your TSH is usually high.   But there are a couple of really well-informed peeps on the Thyroid disorders that can help/educate you while you're monitoring your condition (whether it be tx induced or not).

Hopefully it will continue to be a non-benign mass (a great percentage of the population have benign nodules :)), and continued monitoring of your bloods will show little fluctuation.  Did they recommend any further biopsy or check on it's growth, say 6 or twelve monthly?
766573 tn?1365166466
I am so glad your mass was not cancerous. My TSH shot to 17.6 in week 13 and i have been on thyroid meds ever since. I was taking the lowest dose (25 mg) and had my T4 checked periodically throughout treatment then out of nowhere on my EOT labs my TSH shot to 15.something. (!!).

Rather than freaking I am just going to hope like everyone says that these values will rebound but quite honestly I have not stumbled across much promising data for that happening when TSH gets this out of whack.  :(

I am really glad things are falling into place for you after treatment. My heart just aches when I tales of people ending up with a chronic condition that was triggered by these meds.

Keep up posted and take care!!
Avatar universal
Your thyroid adventures are amazing. My endo that did the biopsy did not do the thyroid antibody test. His focus is completely on thyroid cancer and he works out of a University Cancer Center (just going there was scary).The primary thing I wanted him was for the biopsy. He is well known for this and thyroid cancer surgery. I wanted to be sure that I had a good biopsy done by someone who should know how to do it correctly and evaluate it as accurately as possible. He has published a paper or two on the subject and is considered an expert. I will discuss the thyroid antibody test with the new endo since he is local (new to the area), highly thought of, and a good person to do my monitoring since he is much closer.

It sounds like you are doing well with managing your thyroid issues. That is good to hear because I know it can be tough for some people. Thanks so much for responding!
G

You mentioned that your mass was considered hot; mine was thought to be cold and I think that is what caused so much concern. The way some folks interpreted the radiologist report was that the mass was probably cancer (for those who don't know a hot nodule is usually not cancer but a cold nodule is 10% more likely to be cancer). I didn't want to have half of my thyroid removed because of what the radiologist said (they can't diagnose cancer).

The endo I saw at the cancer center wanted to see me again in 12 months but I might as well check in with the local endo in March and let him get involved. We can do further testing and see where things are at then. There are more tests we can run and you have pointed out some great things he can check and that was really helpful.
Avatar universal
Wow, your thyroid has to wreaking havoc with you. That stuff is not funny! I have not heard numbers as wild as yours but I have heard of a lot of thyroid issues that came on during tx that it made concerned that mine was possibly related. I wanted to put it out there in case it comes up again on someone else. As I said before, these meds are just so new we can't know the long term effects until more people finish tx. This web site and all of you are such a valuable resource for those of us who have taken these meds. I am grateful to have had them to take to get rid of hep c but know that awareness is good for us all.

I hope your thyroid starts to get better. I am one year post triple tx now but the nodule was found about nine months afterward. I am not sure where you are at with tx but will check your profile. My thyroid response during tx wasn't too bad but who knows when the growth started?
Thanks for responding. I hope you are feeling better!
G
Avatar universal
You know, those drugs can do something great like get rid of hep c wouldn't it be awesome if it did something else positive that we don't know about yet? Ha. Hope is a great thing!
G
317787 tn?1473358451
Dear G, so happy to hear from you. Thank you for sharing, I think there is new information regarding the new medication coming out.
It is great to hear from you.
Take care
317787 tn?1473358451
Hi I just remembered that NYGirl7 and LChrisman, had problems right after tx, I think there were a couple of others so this is a good thing to know
My tsh went up to 5.6 right after tx, it has since leveled off
My best to you
Dee
92903 tn?1309904711
I had thyroid trouble after tx, then TSH settled back in place. A few years later a cancerous lump was disscovered. Took thyroid out - missed three days of work. Now a pill everyday and I'm good as new.  
Avatar universal
I am sorry to hear about the trouble you had but thanks for letting me know. I am going to try to keep an eye on it because it is very weird to have one side of your thyroid so enlarged and the other one is ok. It is also good to know that they were able to get you regulated ok after the removal. They tell you things that scare the heebee geebees out of you about the surgery. I hope you continue to enjoy good health!
G
Avatar universal
I know NYGirl had her thyroid totally tank after tx. I am not sure of the other person but will look into it. We all just need to be aware and keep each other informed :0)
Thanks for the post!
G
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