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Thyroid Function and Interferon Treament FYI
"Check Your Thyroid Function Before & During Interferon Therapy"--This Article Recommends thyroid function and thyroid antibodies should be evaluated before the start of treatment with IFN-alpha interferon & regularly during therapy.
http://www.natap.org/2001/mar/checkyourthyroid031101.htm I was never told this and mine were never checked.
I know this article is old, but finally more and more doctors are being open about the thyroid damage from interferon. After three years of debilitating pain and other PIS issues I found a doctor who concurred that my "mysterious illness and symptoms" are most likely the damage to my thyroid from interferon. I am being treated and the improvement is dramatic, especially the muscle and bone pain. My vitamin D (which can cause all over body pain) and B12 (which can cause peripheral neuropathy) were low as well. The lack of the thyroid hormone, the Vitamin D and B12 is a perfect storm of PIS.
My thyroid was tested by more than one doctor but the "normal" lab work does not tell the whole story; find a doctor who knows how to dx thyroid disease. Some doctors, even some endocrinologists, cling to the "Immaculate TSH Belief" and won't look at the whole picture. If you are still suffering and you've been told your labs are "normal" read the following and start searching, "The TSH Reference Range Wars: What's "Normal?", Who is Wrong, Who is Right..."
http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm
The symptoms of thyroid disease are the same symptoms we see most often from people on the PIS threads and include: muscle and bone pain, aches in joints, hands and feet; fatigued, exhausted, run down, sluggish, lethargic, depressed, restless, moods change easily, feelings of worthlessness, difficulty concentrating, feelings of sadness, losing interest in normal daily activities, more forgetful, can't seem to remember things (brain fog); insomnia, gaining weight inappropriately, unable to lose weight with diet/exercise, constipation, hypothermia/low body temperature (feel cold when others feel hot, need extra sweaters, etc.), hair is coarse, dry, breaking, brittle, falling out; skin is coarse, dry, scaly, and thick; hoarse or gravely voice, puffiness and swelling around the eyes and face; carpal-tunnel syndrome, irregular menstrual cycles, trouble conceiving a baby, no sex drive, more frequent infections that last longer, snoring more, sleep apnea, shortness of breath and tightness in the chest, need to yawn to get oxygen, eyes feel gritty and dry, eyes feel sensitive to light, eyes get jumpy/tics causing headaches, vision issues, strange feelings in neck or throat, tinnitus (ringing in ears), recurrent sinus infections, vertigo, light headed, severe menstrual cramps...and more.
The thyroid hormone controls every cell in your body; and therefore, everything in your body.
http://www.natap.org/2001/mar/checkyourthyroid031101.htm I was never told this and mine were never checked.
I know this article is old, but finally more and more doctors are being open about the thyroid damage from interferon. After three years of debilitating pain and other PIS issues I found a doctor who concurred that my "mysterious illness and symptoms" are most likely the damage to my thyroid from interferon. I am being treated and the improvement is dramatic, especially the muscle and bone pain. My vitamin D (which can cause all over body pain) and B12 (which can cause peripheral neuropathy) were low as well. The lack of the thyroid hormone, the Vitamin D and B12 is a perfect storm of PIS.
My thyroid was tested by more than one doctor but the "normal" lab work does not tell the whole story; find a doctor who knows how to dx thyroid disease. Some doctors, even some endocrinologists, cling to the "Immaculate TSH Belief" and won't look at the whole picture. If you are still suffering and you've been told your labs are "normal" read the following and start searching, "The TSH Reference Range Wars: What's "Normal?", Who is Wrong, Who is Right..."
http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm
The symptoms of thyroid disease are the same symptoms we see most often from people on the PIS threads and include: muscle and bone pain, aches in joints, hands and feet; fatigued, exhausted, run down, sluggish, lethargic, depressed, restless, moods change easily, feelings of worthlessness, difficulty concentrating, feelings of sadness, losing interest in normal daily activities, more forgetful, can't seem to remember things (brain fog); insomnia, gaining weight inappropriately, unable to lose weight with diet/exercise, constipation, hypothermia/low body temperature (feel cold when others feel hot, need extra sweaters, etc.), hair is coarse, dry, breaking, brittle, falling out; skin is coarse, dry, scaly, and thick; hoarse or gravely voice, puffiness and swelling around the eyes and face; carpal-tunnel syndrome, irregular menstrual cycles, trouble conceiving a baby, no sex drive, more frequent infections that last longer, snoring more, sleep apnea, shortness of breath and tightness in the chest, need to yawn to get oxygen, eyes feel gritty and dry, eyes feel sensitive to light, eyes get jumpy/tics causing headaches, vision issues, strange feelings in neck or throat, tinnitus (ringing in ears), recurrent sinus infections, vertigo, light headed, severe menstrual cramps...and more.
The thyroid hormone controls every cell in your body; and therefore, everything in your body.
I just wanted to update you on the latest with this. After I had finally though this thyroid thing was normalized again (see above post), during the past 4 mon., and I've been off of Synthyroid for about 7-8 mon, it's now swung over to being hyper. My TSH is extremely low. So far, it's been low for the past 3 blood tests. Free T3 and free T4 are doing well though. Right now, I'm choosing to do nothing but follow it and as long as it does get worse or if I don't get any goiter, I have no intentions of killing my thyroid. Just knowing that I won't be doing any more interferon again, ever...
I think doing a pre and post check on the thyroid is just a good idea if it helps one to account for some of the many changes/symptoms that appear during and/or post tx. I know I had to have several pre-tests on many things for the clinical trial I did, including an eye exam, but the thyroid was not included at that time. There are probably many more pre and post tests that should be done. Hopefully, things resolve in time, but for many they don't.
Hi there! This is all very good information, thanks so much for sharing. I had a problem with my thyroid about 2 to 3 months after finishing tx. My TSH was 17. It slowly returned to normal.
I also treated with someone who had the opposite problem with her thyroid and the specialist had recommended killing it. Her HCV doc said they should wait 6 months to see if it would normalize, it did.
Faith, I am so happy that you found out what the problem was. What a blessing. I know that it will give others hope who are suffering post tx.
My best to you, Dee
I also treated with someone who had the opposite problem with her thyroid and the specialist had recommended killing it. Her HCV doc said they should wait 6 months to see if it would normalize, it did.
Faith, I am so happy that you found out what the problem was. What a blessing. I know that it will give others hope who are suffering post tx.
My best to you, Dee
I feel I must comment on this subject. You may or may not know this, but I've done like 12-13 separate Hep C treatments, all using interferon. With that said, I've never reached SVR status. Years ago, after one of my treatments, I had a short period of time post treatment where my thyroid was temporarily testing as slightly hypothyroid. I was put on Cytomel for like one month and everything normalized and was never an issue again until..
I did several more interferon based treatments after that, thyroid always normal both during and after treatments since the above mentioned 'episode'.
Then, last summer 2014, I did Sovaldi, Pegasys and Riba. Thyroid was normal prior to TX and all through and even directly after. But, 2 months out, it wacked out. TSH was hugely out of line.., something like 20,000 or some ridiculous number. So, they did the Free T4 and repeat TSH, and it was again, abnormal. So, doctor started me on 50mcg of Synthroid. It made me feel absolutely horrible. Literally, felt like it was giving me a stroke with numb fingers, then, progressing to numbness in my arms and legs. This went on for a couple of weeks and I couldn't take it. I told my doctors to refer me out to an endocrinologist. Went to endo and explained that this had 'happened to me slightly' years ago post Hep C treatment and that the Synthroid was making me feel horrible. He cut it back and I was taking the 25mcg. Still having numb fingers. So, I asked them about checking me for Hasimoto's and to run some more detailed thyroid tests. This doctor, I think was thinking more about the cost of the tests than what was best for me. So on my own, I went to a walk-in labs and paid for the more detailed tests and the antibodies for Hashi's/Graves. I was so happy that they came back negative on Hashi's. So, since I was still feeling bad and my thyroid was way closer to the normal range again, I cut my dosage in half again, by breaking the 25mcg pill in half. And then, I researched using essential oils to 'help' the thyroid functioning. I got Frankinsense and Myrrh and mixed it into a carrier oil of Sweet Almond Oil. Anyhow, I know this sounds long and involved, but this occurred over several months period of time. I was regularly going into the walk-in labs to get TSH's and Free T4, Free T3, to make sure that I wasn't causing any harm to myself. In between this, my normal internal medicine doctor had me scheduled for my yearly physical and had ordered the Free T3/T4 and TSH and they were NORMAL. So, I again, cut back my dosage to 12.5mcg, one every 4 days. And then, kept on checking it at labs, and cutting it back, week after week, until, at last I was completely weaned off of the Synthroid, have normal thyroid tests and it's all back to baseline. I recently had the tests again after being off for 9 days of normal Synthroid and it was normal. That was the labs ordered by the endo. So, I wrote all this up and made copies of the labs and gave it to the endo and explained that if he was okay with it that I wanted to call this a 'non-issue' now and chaulk it up to the post-interferon effect on my thyroid. He was fine with that and now I don't have to see him anymore. I will be having my normal TSH checked when I get regular labs so, if it gets whacked out again, I can address it at that time. But, for now, it's all good. My Hep C TX was over last Sept. so, this has been awhile. I just wanted to post this in case anyone else has this experience. I know my situation is not a normal scenario. Susan400
I did several more interferon based treatments after that, thyroid always normal both during and after treatments since the above mentioned 'episode'.
Then, last summer 2014, I did Sovaldi, Pegasys and Riba. Thyroid was normal prior to TX and all through and even directly after. But, 2 months out, it wacked out. TSH was hugely out of line.., something like 20,000 or some ridiculous number. So, they did the Free T4 and repeat TSH, and it was again, abnormal. So, doctor started me on 50mcg of Synthroid. It made me feel absolutely horrible. Literally, felt like it was giving me a stroke with numb fingers, then, progressing to numbness in my arms and legs. This went on for a couple of weeks and I couldn't take it. I told my doctors to refer me out to an endocrinologist. Went to endo and explained that this had 'happened to me slightly' years ago post Hep C treatment and that the Synthroid was making me feel horrible. He cut it back and I was taking the 25mcg. Still having numb fingers. So, I asked them about checking me for Hasimoto's and to run some more detailed thyroid tests. This doctor, I think was thinking more about the cost of the tests than what was best for me. So on my own, I went to a walk-in labs and paid for the more detailed tests and the antibodies for Hashi's/Graves. I was so happy that they came back negative on Hashi's. So, since I was still feeling bad and my thyroid was way closer to the normal range again, I cut my dosage in half again, by breaking the 25mcg pill in half. And then, I researched using essential oils to 'help' the thyroid functioning. I got Frankinsense and Myrrh and mixed it into a carrier oil of Sweet Almond Oil. Anyhow, I know this sounds long and involved, but this occurred over several months period of time. I was regularly going into the walk-in labs to get TSH's and Free T4, Free T3, to make sure that I wasn't causing any harm to myself. In between this, my normal internal medicine doctor had me scheduled for my yearly physical and had ordered the Free T3/T4 and TSH and they were NORMAL. So, I again, cut back my dosage to 12.5mcg, one every 4 days. And then, kept on checking it at labs, and cutting it back, week after week, until, at last I was completely weaned off of the Synthroid, have normal thyroid tests and it's all back to baseline. I recently had the tests again after being off for 9 days of normal Synthroid and it was normal. That was the labs ordered by the endo. So, I wrote all this up and made copies of the labs and gave it to the endo and explained that if he was okay with it that I wanted to call this a 'non-issue' now and chaulk it up to the post-interferon effect on my thyroid. He was fine with that and now I don't have to see him anymore. I will be having my normal TSH checked when I get regular labs so, if it gets whacked out again, I can address it at that time. But, for now, it's all good. My Hep C TX was over last Sept. so, this has been awhile. I just wanted to post this in case anyone else has this experience. I know my situation is not a normal scenario. Susan400
Great post!
When we have liver disease we tend to forget that we could also be suffering from other issues not related to the liver. The thyroid can wreak havoc on the body and also mimic other ailments as well.
......Kim
When we have liver disease we tend to forget that we could also be suffering from other issues not related to the liver. The thyroid can wreak havoc on the body and also mimic other ailments as well.
......Kim
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