Thyroid issues post treatment

[Gerbils]

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.
Gerbils

[BoceprevirGal]

  Well, my sister (who was healthy, meaning she never had to Tx) did find a lump on her neck, when she was around 36 yrs old, and did have her Thyroid removed (it did turn out to be cancer, but yrs could very well be a benign mass)  She is on Thyroid meds now, and is doing well, and feeling very healthy.
  Good luck to you~

[nygirl7]

Juleston-
and the sustained viral response is temporary."

This is completely false, inaccurate information that you have received.
-----------------------------
Gerbils, your dad sounds like a truly amazing man.  Boy is he tough now I see where you get it from :)

Yes my thyroid died off completely first I went hyper then I went hypo but I was only at week 20 or 72 so I had to remain on the interferon a long time and it didn't have time to recover. About a month ago I decided to try a test though (my doctor is livid) and I stopped taking the synthroid. I want to see what my numbers are without it. I'll go back on it again this week once I get my blood work back but I was curious. Dont ask me why I play around with my health I'm a bit crazy I suppose ;)

[Gerbils]

Thank you for your response. The web site you suggested is awesome. I also wanted to look at my TSH levels during treatment but hadn't had the time with everything else going on. But got it done now.  Here is what I found.
Prior to treatment my TSH was 1.6; a few months in to tx it was at 2.6. It stayed there throughout tx. It is now 2.4 so it has actually improved slightly. My t4 was never looked at prior to tx or during apparently because the TSH wasn't a concern. The strange thing is that the mass could have always been there. My dentist is the one who found it (a dentist's chair is perfect for a thyroid exam!) My regular doctor didn't feel it at all but ordered the ultrasound because he felt the TSH and the T4 were borderline so it is possible that it has been missed before (it is not visible at all). Interesting. The charts on that web site were great but since I have no old T4 numbers they don't help me figure this out but that's ok because I still have to get the mass checked out anyway.

And you are correct in your thinking. The doctors weren't talking options at all. My GP sent me not to an endo but straight to an Otolaryngologist (head and neck surgeon). There was no other evaluation. I want to see an endo because if all or part of thyroid is removed I want an expert to try and help get it regulated afterward. I want an endo. Thanks again for your help. It was great.
G

[Gerbils]

Geno:1a VL: 6.4 mil at the beginning. I think there are quite a few folks who have SVR'd on this site after using the new triple therapies and only one that I know of that have relapsed after completing the tx.  I know of several that the tx was not working on and then stopped because they did not meet the criteria to continue (they were not undetectable at weeks 4, 8, etc) or who stopped early in the tx because of severe complications and then their disease returned.

Also, so far I am the only person I know who has had a mass grow on the thyroid. I know of one that found a nodule (found to be benign) and several that had to take thyroid meds after tx because the tx can worsen any pre-existing conditions and probably induce thyroid issues such as hypo and hyperthyroid conditions. I do know of one person whose thyroid stopped working completely but SVR'd (also treated more than once prior to triple therapies being available). I am not sure what you mean by major organ problems but  I do know of someone who got liver cancer but not due to the tx. Some of the folks on here may get liver cancer anyway but getting rid of hep c doesn't mean that you will be perfectly healthy for like.

I understand your fear of the meds. I was terrified too at the beginning. I started tx just a couple of weeks after Incivek came out. If your liver is not too damaged at this point you may be able to wait for some of the new treatments that are currently in trials. I understand that there are some new ones out there that are effective using oral meds only but I am definitely not an expert on that. You should look in to them if you can wait but realize it may be years before they are available. I wish you the best of luck in what ever you decide to do and if you know of people who have completed treatment with the triple therapy and relapsed I would like to hear about it because wasn't aware of it.
G

[Idyllic]

"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)."
_____________________________

So you are not currently taking any form of thyroid medication.  Maybe the best place to start is the comparing your baseline Thyroid values to your most recent thyroid panel. What are the reference ranges stated on your lab report?

When it comes to acceptable TSH levels one thing I noticed both on here, on line and in real life is there is a general lack of consensus within the Endocrinology community as a whole. I have seen acceptable reference Intervals expressed as narrowly as (0.3 to 3.0) by AACE (American Academy of Endos). The LabCorp Reference Interval on my labs is (0.450 - 4.500). Free T4 0.82 - 1.77)

_____________

Having said that some clinicians might suggest a TSH of 2.4 is not bad. To me what matters is the level you functioned at pre-treatment and how you are functioning now.  You feel like you may have some Hypo symptoms but it takes time post treatment for many values to rebound. If they do.

I know this all depends on your own medical history but to me a TSH of 2.4 is definitely in the "Keep an Eye on This" category.

I was wondering if the first Endo you saw was interested in being able to examine your mass by removing it to determine (or rule out) Hashimotos (thyroiditis)?

This link has a chart. It says The pattern of test results in people with hyperthyroidism or hypothyroidism can help doctors determine the underlying cause of the condition:
You have to scroll down:
http://www.endocrine.niddk.nih.gov/pubs/thyroidtests/index.aspx

Here is a link called
Hashimoto's vs. Hypothyroidism: What's the Difference?
http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm

I feel like the first person you saw did not present many treatment options and did not explain things as thoroughly as he could.

I hope this works out and you keep us posted. ♫

[Gerbils]

Good luck with your treatment! You didn't say which triple you are using but either way since you have a prior relapse you are probably in for a longer course of treatment. I know you have treated before but I hope to see you SVR this time.
G

[Gerbils]

Thank you for that link on the FNA biopsies. I did not know about the core biopsy so I am much better informed now. Also the questions to ask are great ones. I very much appreciate your response.
G

[Gerbils]

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.
G

[Gerbils]

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.
G

[juleston]

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.

[nygirl7]

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 :)

[can-do-man]

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

http://health.yahoo.net/articles/nutrition/photos/dangerous-drink-and-drug-interactions#1

[Idyllic]

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:
http://thyroid.about.com/cs/nodulesgoiters/a/fna.htm

Keep us posted

[nygirl7]

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.
Deb

[Gerbils]

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.
G

[Idyllic]

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.

[garrygee]

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.

[frijole]

gerbils
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?
frijole

[Dee1956]

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
Dee