Went to the endo yesterday, she says I have Graves?

My T4 is 5.50 and my TSH 0.01. I know I got some kind of IFN induced hyperthyroidism because I cannot sleep, can't stand sunlight, weightloss and feel crappy most of the time.
But to say that I have Graves just out of the blue? The worst part is that I'm a referral from a hepatologist so she knows I'm a combo patient. the SUMIAL she gave me is kinda of working though. Igive her that... I had a good night sleep and I don't feel lousy like in previous days.
She ordered a gamma xray on monday and an ultrasound on the 27th. So by then I won't know if the IFN is killing my thyroid.
I read in many places that thyroid things go away after TX but if it they are real bad patients should stop, I'm about to stop on 16
She didn't tell me that : she just said "just continue with TX (and the bunch of pills she gave me)and if we have to treat your thyroid (burn it with iodine)for life we will if we have to...
Does that seem logical to you? Is she a complete moron? is she anothe example of HCV ignorance? Or is this a normal procedure?
Anybody here developed permanent Graves disease after TX???

Regards
scuba

[chcnme]

Hi Scuba.  So sorry to hear about your thyroid and all the unpleasant symptoms that go with "hyper".  I'm not surprised, though  (to hear your thyroid is hyper) because I've seen so many patients on Hep C treatment be diagnosed with the same  (either hypo or hyper).  I'm glad the doc has gotten you some relief with whatever she/he is treating you with now.  I've met people on Hep C treatment (or not on treatment - just had Hep)  who had hypo or hyperthyroidism;  I've met some whose thyroid conditions DID spontaneously resolve with the stopping of Hep C treatment, and I've met others who had to have their thyroids removed and were put on replacement therapy.

I'm always concerned about the possibility of having thyroid problems if I go on Hep C treatment. I have a family history of Graves disease (mom and her mom). Both developed goiters and had their thyroids radiated, and both (because the radiation destroyed their thyroids) eventually had to have their thyroids removed and do the Synthroid for life, which - mom has done fine on Synthroid, but that's not to say a total thyroidectomy is a cake walk for anyone / everyone.  But I think most who have to have their thyroids removed do OK on Synthroid.

You said  (in your note)  that you are "about to stop on 16".  (Do you mean you are going to stop Hep C treatment at week 16 because of the thyroid disorder?)  I am confused on that - was just wondering.  

It sounds "logical" you've been diagnosed with a thyroid disorder while on Hep C treatment. I hope whatever they have in store for you as far as treating the thyroid disorder now, it will work out OK. Hang in there.  Let us know how you're doing.  

[scubadiver30]

Hi there,
yes that's what I meant. I was considering into stopping at 16 weeks due to the side effects and RVR status and G2. But now that I realize that my Thyroid is being compromised I do have another medical issue to think about..I don't want to have it removed.
Maybe this a real med reason to stop and wait for newer meds. My 16th shot is on friday (i'll see how I feel next week with the thyroid)
Thias really is a rollercoaster ain' it? :-(

[scubadiver30]

I forgot. She said the DX is not definitive yet cuase she needs the THY antibodies results but she's 90% is Graves
Has anybody discontinued TX due to Hashimoto or Graves?

[dlr2007]

Hi- I'm not really knowledgable about thyroid issues though I do have hep c and hypothroidism (I suspect it swung down from hypos cuz a few years ago I was underweight, extremely nervous, tec- all the symptoms of hyperthyroidism- now I'm overweight,can't lose the weight, tired, something off with my heartbeat (?-gotta have it followed up). Synthroid helps but seems my doc is always lowering my dose when I'm starting to feel better.
  I would think you should talk to your liver doc about this- for me it would depend on what stage of liver damage I was at, how hep c itself was affecting my life... and the likelyhood of having my throid removed cuz of tx. Basically, what would be the lesser of two evils? This hep c thing sux, I know. -Dee

[Evannescence]

What I got from your post is that you have a doctor (is it your GP or a specialist) who is treating the thyroid situation and your hepatologist who did the referral.  I wonder why it is that the hepatologist doesnt work alonside the endocrinologist on this, since thyroid issues are so commonplace with HepC treatment.

[Kit07]

Hi scubadiver I had Hashimoto's hypothyroid and was stable on Synthroid for 10 years prior to 48 weeks combo tx, then relapsed :-(  my hypothyroisism was an old  family trend, or perhaps even triggered by HCV, I think in retrospect.  But the synthroid worked well until tx. During tx I went hyperthyroid AND hypothyroid.  Basically we chased the lab numbers by switching thyroid doses throughout tx. It wasn't fun.  By 6 months after tx my thyroid numbers were back to where they were pre-tx, and I have been on a stable dose of synthroid for several months now (125mcg).  No big deal, really - it is the least of my medical problems.  My endo does a manual/visual check of my thyroid every few months and has never (yet) detected any abnormalities.

Another chat group I follow had a number of people with thyroid disorders - hyp and hyper - while on tx.  I would be suspicious of any permanent thyroid disorder diagnoses while on tx.  

Kit

[nygirl7]

I developed Graves at about week 30 - in a few short weeks it turned from completely hyper to completely hypo.
My original TSH was 0.0

It is VERY common for this to happen - it turning quickly from one to the other.

The bad news is that the sides are pretty similar really. Hyper is much worse to be than hypo.  Hyper can be very dangerous you can experience many SERIOUS problems.  And with hyper...often times they have to radiate your thyroid and then remove it.

So - it probably is to the advantage WHEN it turns hypo (cause it probably will).

I take Synthroid 75mcg once a day before bed.

So far it's helped greatly and I'm doing fine.  I do hope that since I am hypo my thyroid does have a chance to recover. That would make my day.

But if it doesn't - it's not a really huge inconvenience for me to take a pill a day.

What you have is an autoimmune disease from the IFN - in addition to killing off the bad virus it perceives your thyroid to be bad as well and is killing that.

I was on week 30 and went to week 72 with the problem.  So you don't have to stop treatment at all - but seeing the endo and being on the meds are crucial.

Good luck!

[nygirl7]

Your doctor is right on the money. If you do remain hyper they will have to radiate and then remove your thyroid - it's a dangerous situation.

But remember - OFTEN and most COMMONLY it will do a flip flop.

By the time I was diagnosed at week 30 and I waited for my nuclear imaging scan three weeks late4r - I'd gone from COMPLETELY HYPER to COMPLETELY HYPO.

It's a VERY common situation when it is IFN induced.

Wait and see what happens.  I almost think you might be better off putting off the scan for a few weeks - just to be sure.

[ladybug52]

Check your e-mail. when will you get results of test? If she's able to treat with meds and get your sumptoms under control are you going to continue? I'm not one who pushes for the full 24 when you have side effects like yours. Like you said, if you relapse at 16, you'd probably relapse at 24. That's going to make some people disagree, but I'm with you!
Bug

[rosebud57]

hi scuba,
I am up burning the midnight oil. think i just finished the first draft of thesis. whew hard to do on meds. but i have had some clarity this week. i think due to the recent adjustment to thyroid meds.

sorry to hear about your medical dilemna. as i have said i recently had problems. docs able to fix i had gone hypo swear it was hyper couldn't sleep lot of same sx you described for yourself. i felt just awful. they bumped up my thyroid meds and within days i was sleeping and feeling more energy.

hey remember you and i began same week i think. I am not real good at keeping log, don't want to bother with it. but i am at week 16 thurday - today.

anyway it is standard protocol to radioiodine overactive even then the process may not kill off the whole thyroid, key is followed by endo and maintaining proper levels synthetically, but maybe like someothers have said before tests get done you will have already experienced an adjustment.

i only know of one person who had this done proceedure done, and he didn't fare so well but i really believe in his case it was because he didn't followup with doc. appts. with family members (you or other hep member you or they may have more experience.

good luck i'm sure you will be in many thoughts and prayers for good outcome and good health.

take care
rose