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Avatar universal

Thyroid issues post treatment

Hi Everyone,
Some of you may remember me. I started peg+riba+incivek June of 2011, SVR in 2012. I had the usual post treatment lingering sides but gradually improved and really felt pretty awesome for a while. In July I started to notice that I was a little more tired than usual and wondered if something was up but really didn't feel that bad and as always like most of us have a lot going on. My dentist thought that my thyroid was enlarged so I went to the doctor and he didn't think so but a TSH test that said my thyroid was borderline low. The doctor sent me for an untrasound and my thyroid is very enlarged on the right side only. I saw an Otolarengologist and he said basically that the right side of my thyroid is a 4 centimeter mass (not good). He doesn't want to do a biopsy just remove that side and then do a biopsy and decide whether to remove the whole thyroid. I am going to get a second opinion ASAP, hopefully with someone who specializes in thyroid issues. Do any of you know of anyone else who has experienced anything similar after treatment? I am not saying this is related to the treatment because there is probably no way to know for certain. I am going to call my hep doctor to see if we ever checked my thyroid function during treatment but I think we did and there were no problems then. It is just that this was either already present or grew very fast (possibly the latter). I know I have seen people ending up taking thyroid meds after treatment but don't think I have seen anything like this. BTW, there is no history of thyroid cancer in my family or any other thyroid issues. I wanted to post this in case anyone else who treats comes up with it later because I think it is important to pay attention to this kind of thing because the meds we have all been taking are so new. I am currently 10 months post tx. Take care everyone.
19 Responses
317787 tn?1473362051
Hey there friend!  I would get a second opinion, I remember another member on here who had a thyroid problem several months after finishing tx.  Her doctor wanted to remove her thyroid but her hepatologist asked her to wait because it could have been caused by the tx and could balance itself out.  Four months post tx it was discovered thaqt my TSH was too high meaning that my body was asking for more medication.  I also had the free T-3 and Free T-4 tested and they both came out normal so my meds were reduced a bit.
If I were you I would conduct a search under Hep C forum for thyroid issues, I have read many stories re thyroid issues.  Is this the first time you have had your thyroid tested since EOT?  NYGirl7 also had problems post tx.  
I hope you can get some answers.  Have they put you on synthroid?  I take synthroid and cytomel

My very best to you
223152 tn?1346981971
Like Dee, my TSH test was high at EOT.  It has gone down and is in range now, but is still twice as much as the pre tx number.  I have not been put on synthroid but I plan to discuss this with my internist in November at my regular check up.  I am tired in the evenings still and that could be a hypoactive thyroid problem.

Normally the thyroid is tested pre tx and during, and mine was, but it was not until EOT that mine was out of range.  I lean toward Dee's thinking - monitor but wait to see if it gets any better.

Are you having any symptoms?
3867523 tn?1348953285
I've had to take thyroid since my first year long treatment with peginterferon/ribavirin.  I did not have any enlargement of my thyroid, but full function has never returned.  That was 11 years ago.  I'm about to start triple treatment now.
766573 tn?1365170066
As others have said I would get a second and maybe even third opinion.
My TSH went to 17.6 in week 11 but I was basically asymptomatic.

Is there some medical reason the doctor cannot do some type of biopsy? I know there are some things there is no way of knowing unless they come out but this is your thyroid we are talking about. I guess I don't see the urgency to remove the mass without knowing its origin. Isn't there a way to monitor it by a periodic ultrasound or something?

Eventually you are going to learn a lot about the thyroid since it is a rather serious condition you might have to live with the rest of your life. I feel like I have but not to the extent where I would know anything about the pathology of a mass. I can tell you that being on thyroid meds is something you get used to but it is a huge hassle. It took a very long time to find the right dose and then more time just learning the ins and outs of the meds and what works best.

I hope others can contribute more insight. If all else fails there are a few knowledgeable people on the thyroid forum who seem to know their stuff. It might take a little longer to get an answer but it might be worth a try.

I hope this works out and you keep us informed.

Avatar universal
Thanks so much for your responses! I couldn't respond sooner because my Dad had a major heart attack Sunday night and I had to go there. I tried to answer from my cell but it lost my whole answer. So here goes.

I followed a lot of your advice. I also called my gastro who treated my hep and he reviewed my thryoid stuff from treatment. I trust this doc. No signs of trouble with my thyroid during tx. Even 6 mos post tx when I SVR'd my thyroid looks normal. I am now 10 mos post tx. The problem here is not just my TSH or the T4; it is mostly the enlargement which at 4 cm is a lot. I trust my gastro and he said I shouldn't let them push me to remove it. He said if he was in my position he would have it evaluated by an endocrinologist that specializes in thyroid issues and proceed from there. He said that if fine needle biopsies come back as inconclusive then all of the results need to be considered to make a reasonable decision. They have not put me on thyroid meds as my TSH and T4 are not low enough. (My TSH  is 2.4 and the T4 is .89). I spoke to my primary and they faxed my info to the best thyroid center in the state and got me an appt on Nov. 14th (it normally takes 3-4 mos to get in).  Bottom line: a 4cm thyroid mass on a 56 year old needs to be evaluated pronto.  FYI: ultrasound can measure the mass but can't determine whether it is benign or malignant (although it is interesting to note that the radiologist thought it looked malignant.)

My gut and all of yours didn't feel right about just removing it. I know that once they take it out it is gone forever and many people have long term issues getting regulated again; however many others do well. From the responses on the forum here I think my situation is not common at all after tx which is blessing for you all. I wanted to let you know about it in case it keeps coming up for those of us who completed triple therapy. I seriously doubt that it will as I should have shown some signs during tx. Good luck everyone and wishing SVR for everyone.
179856 tn?1333550962
gerbils I am so sorry about your dad. I hope he makes a full recovery.

Wait and go to the endo. I have to take synthroid every day because my thyroid died during treatment, it's no big deal. But your case is different. My mom has a growth on her thyroid and refuses to do anything about it and she never did treatment. You are smart nit to worry how this happened...and just focus on what to do about it.

Best of luck with everything.
766573 tn?1365170066
Yeah based on what you said about being borderline low I was thinking that didn't really even seem in the subclinical range or ready for meds just yet. Plus as the others said this soon after treatment it would not be unusual to have certain values out of range still. Like you what floored me is the 4 mm mass! I definitely agree with your GI: Obtain a 2nd opinion from an endo that specializes in thyroid issues and proceed from there.

I was reading the FNA (Fina Needle Aspiration) on line and here is article that contrasts ti with another type of biopsy. Maybe you can come up with a list of questions to ask your 2nd opinion doctor:

Keep us posted
Avatar universal
Calcium can interfere with the effectiveness of thyroid medication. Wait at least 4 hours after dosage to drink any calcium-rich beverages.

179856 tn?1333550962
Yes they tell you only take synthroid with water. It's a pain but if you get up early and take it, then go back to bed you can have milk in your coffee shortly after getting up :)
Avatar universal
I've heard that many people who undergo Hep C treatment end up with other serious organ problems, and the sustained viral response is temporary.  The virus ends up coming back in full force within a year, if not sooner (some patients don't even respond).  I hope that is not the case for you.  I am genotype 1b and I'm very wary about doing the treatment.  What genotype are you?  I really believe your thyroid problem is due to the treatment.
Avatar universal
Thank you so much for your response. I find hope in that you feel like your thyroid situation (or lack thereof) is well controlled with the meds. Did your thyroid die completely? I know that a person can live without a thyroid but not a liver so the sacrifice of one over the other makes a lot of sense but the thyroid can be a tough thing to regulate once it is gone.

I wish your Mom would consider treatment. There are diagnostics out there that can help you evaluate your thyroid and get things right. The thing that offers the least hope is to ignore it because so much of what can go wrong with the thyroid is treatable and the vast majority can be cured with treatment. I hope she will reconsider. I can get you some numbers on that if you think she might think about it.

Thanks for the kind thoughts on my Dad; he is a fine example of the miracle of people living way longer than expected. He has had metastic cancer in his lymph nodes, liver, lungs, and bones for 8 years (rare to survive so long). He has also had pneumonia least least twice, and a bleeding ulcer that would have killed most of us; all while doing chemo. Surviving that heart attack was another miracle. I had the opportunity to be a part of a little miracle (not involving my Dad) a few weeks ago that blew my mind that lets you know that there are powers out there orchestrating things.

Thanks again for your response. I really appreciate it.
Avatar universal
Yup to the symptom question. I am tired, constipated, and my muscles are sore. Thanks for your response and that spreadsheet you are keeping on all of us. I hope my situation is not a repeat for anyone else.
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