Aa
after 48 weeks and thyroid
Hallo all, I have hep C abouth 35 years. I just finished my treatment from 48 weeks with Riba en Peginterferon. Virusfree in 12 weeks and still until now! I have a helltime behind me; pneumonia twice and many other problems. My Hb was all the time around 6.0. I started with HB 9.2. I don't understand when you are talking abouth HB which is low on 9.0. Maby it's in Europa different than in US ? I never got anything for it even I asked the doctor. I felt realy bad so I asked less Riba. I went than from 1000mg to 800mg Ribavirine in the 28th week. I felt in one week a little better. It was just enough for me to go on and finished my threatment.
My thyroid is not working good after 6 months threatment Interferon en Riba. Now I stil take Thyrax 75mgr every morning. I am diagnosing with hypothyroidie. Slow working thyroid.
I am 10 days now free from medication and I don't feel better, I feel even more tired and without energie. It seems that only my head works better. I want to do things but my body refuses.
How long does it takes that one feels good? Zo good to be able to work and live the life as you want?
Doe's anybody have experience with thyroid which faled during the threatment from Interferon and Riba?
Regards to all and sorry for my bad Englisch. I did't write Englisch for many years; I hope you understand me. I can read and folow you wel
My thyroid is not working good after 6 months threatment Interferon en Riba. Now I stil take Thyrax 75mgr every morning. I am diagnosing with hypothyroidie. Slow working thyroid.
I am 10 days now free from medication and I don't feel better, I feel even more tired and without energie. It seems that only my head works better. I want to do things but my body refuses.
How long does it takes that one feels good? Zo good to be able to work and live the life as you want?
Doe's anybody have experience with thyroid which faled during the threatment from Interferon and Riba?
Regards to all and sorry for my bad Englisch. I did't write Englisch for many years; I hope you understand me. I can read and folow you wel
O, ja , abouth HB....We have different measure-units in Holland. That,s what the doctor sad. So my HB was not so low after all. HB: 9 is normal and bij 5.5 they wil give you bloodtransfusion. I had abouth 6.
(EPO you don't get hier)
(EPO you don't get hier)
Hi,
yes!!! UND. Over 3 months I wil know for sure that the virus woon't come back.
Abouth appetite...I had the same; soort empty feeling in my stomach. I drink much water and if I am realy hungry I take to eet 2, 3 or 4 oranges. And than glas of water again. It helps me.
Thank's for info
yes!!! UND. Over 3 months I wil know for sure that the virus woon't come back.
Abouth appetite...I had the same; soort empty feeling in my stomach. I drink much water and if I am realy hungry I take to eet 2, 3 or 4 oranges. And than glas of water again. It helps me.
Thank's for info
Yay! Your UND!! I am happy for you. I could not have functioned at Hgb levels as low as yours.
I was wondering if you had different guidelines your Hgb levels were allowed to get so low. The things is that as far as the human body goes the lower the Hgb level goes, the decrease in quality of life. By that I mean not being able to do basic functional things like driving, walking down stairs and standing for long periods of time makes us unable to participate in routine daily events we do to live and survive. I honestly think that should be a factor in deciding when to intervene with low Hgb levels. Sorry if that sounds preachy!!
That's all I was thinking. I didn't want to be on another med myself even though my insurance would have covered it. I don't know the right doses so I just picked the first two on the list:
2,000 unit/mL at one per week the cost would have been $109.32 and it would be paid for 100%
20,000 unit/2 mL VIAL 30 day supply would have been $1,023.75 and covered 100%.
Here is a link from drugstore dot come web site:
http://www.drugstore.com/epogen/1ml-vial-2000unitml-solution/qxn55513012610
I was wondering if you had different guidelines your Hgb levels were allowed to get so low. The things is that as far as the human body goes the lower the Hgb level goes, the decrease in quality of life. By that I mean not being able to do basic functional things like driving, walking down stairs and standing for long periods of time makes us unable to participate in routine daily events we do to live and survive. I honestly think that should be a factor in deciding when to intervene with low Hgb levels. Sorry if that sounds preachy!!
That's all I was thinking. I didn't want to be on another med myself even though my insurance would have covered it. I don't know the right doses so I just picked the first two on the list:
2,000 unit/mL at one per week the cost would have been $109.32 and it would be paid for 100%
20,000 unit/2 mL VIAL 30 day supply would have been $1,023.75 and covered 100%.
Here is a link from drugstore dot come web site:
http://www.drugstore.com/epogen/1ml-vial-2000unitml-solution/qxn55513012610
I know I need to increase my dose another 50 mcg. I just don't like the way it stimulates my appetite.
Hi,
I have been by the doctor. No virus! Eritro's and leuco's and HB is slightly gone up. I have to chek over 3 months again.
My TSH is 2.1. Doctor sad it's normal until 4. I don't know how is in US.
Something else, abouth HB: some countries have different measure for HB. I had normal HB when I started interferon-treatment. It was 9.1. Even 8.0 is still good. Hier in Holland they give blood transfusion bij 5.5 of lower.
They don't give EPO, only for people with dangereus kindey disease.
1 question: doe you have to pay EPO self in US?
I have been by the doctor. No virus! Eritro's and leuco's and HB is slightly gone up. I have to chek over 3 months again.
My TSH is 2.1. Doctor sad it's normal until 4. I don't know how is in US.
Something else, abouth HB: some countries have different measure for HB. I had normal HB when I started interferon-treatment. It was 9.1. Even 8.0 is still good. Hier in Holland they give blood transfusion bij 5.5 of lower.
They don't give EPO, only for people with dangereus kindey disease.
1 question: doe you have to pay EPO self in US?
Idyllic, TSH 8 is very high still. Even TSH 2 is still to high. The most people feel good bij TSH around 1.5
How nice to have so much information!
I never have been tested for T4 and T3. I asked for it, but they don't do it hier normaly. Only TSH. ??
I have now bag full with info and questions for my doctor. Thank's all. I did not answer everybody personaly but I am realy greatful and happy that we have contact.
Dear Deb, I wish you much strength and luck, you are welkom. I hope you get more answers on new thread
I never have been tested for T4 and T3. I asked for it, but they don't do it hier normaly. Only TSH. ??
I have now bag full with info and questions for my doctor. Thank's all. I did not answer everybody personaly but I am realy greatful and happy that we have contact.
Dear Deb, I wish you much strength and luck, you are welkom. I hope you get more answers on new thread
I have been reading about Interferon-induced hypothyroidism since I now have to take daily thyroid medication as well. My thyroid went up to 17 something in week 12. I take 50 mcg of Levothyroxine and my TSH is at 8. Maybe it is lower now. :( :(
From what I have read there conflicting stats that indicate the % of folks whose thyroid function returns to normal After treating. The first time I treated I became hyperthyroid and my thyroid function returned to baseline a couple of months after I treated.
***However** it seems to me that hypothyroidism is more complicated. I am not feeling encouraged since it seems like most of the members who developed hypothyroidism during treatment still have to take the meds.
Anyway below is an article that explains why it is difficult to predict whether thyroid function will return to normal after treating. Here are some of the more salient details:
1. Thyroid autoantibodies remain positive indefinitely in about 50% of the patients with IFN-induced thyroid disease, whereas in others circulating antibodies disappear after IFN withdrawal.
2. Data on the evolution of IFN-related thyroid disease after IFN treatment are controversial. Some authors have reported complete recovery of thyroid function within a few months after IFN withdrawal.
3. However, others have reported only a partial reversal of thyroid dysfunction. These contrasting results may be due to either the variable length of follow-up after IFN withdrawal or the criteria used to define the recovery from thyroid disease. A single case of severe hypothyroidism resolved spontaneously after IFN withdrawal. However, the underlying autoimmune process usually persists.
4. However, even years later thyroid autoantibodies may reappear. As previously discussed, patients developing thyroid autoimmune disease during IFNα appear to be genetically predisposed. For this reason, the relapse of circulating thyroid antibodies has occurred several years after IFN has been discontinued.
5. Also, hypothyroidism may occur several years after IFN withdrawal due to the progression of the thyroid autoimmune process. The thyroid autoantibody pattern at the end of IFN therapy may be a reliable marker for the subsequent outcome of thyroid function. Thus, patients with high titers of thyroid autoantibodies and those with coexistent TgAbs and TPOAbs at the end of IFN treatment have an increased risk to develop hypothyroidism in the following years, supporting the hypothesis that the activity of the intrathyroidal autoimmune process may be reflective of peripheral autoantibody patterns.
6. Finally, euthyroid patients with a previous episode of IFN-induced thyroid dysfunction are prone to develop altered thyroid function when exposed to excess iodine.
Journal of Clinical Endocrinology & Metabolism
Aug 2004
Interferon-α-Related Thyroid Disease: Pathophysiological, Epidemiological, and Clinical Aspects
http://jcem.endojournals.org/content/89/8/3656.full
__________________
♫With Interferon I not sure baseline thyroid antibodies really has all that much to do with it. Sorry this isn't more definite. I just don't think the resilience of thyroid function is as easy to reliably predict as say Hgb levels♫
From what I have read there conflicting stats that indicate the % of folks whose thyroid function returns to normal After treating. The first time I treated I became hyperthyroid and my thyroid function returned to baseline a couple of months after I treated.
***However** it seems to me that hypothyroidism is more complicated. I am not feeling encouraged since it seems like most of the members who developed hypothyroidism during treatment still have to take the meds.
Anyway below is an article that explains why it is difficult to predict whether thyroid function will return to normal after treating. Here are some of the more salient details:
1. Thyroid autoantibodies remain positive indefinitely in about 50% of the patients with IFN-induced thyroid disease, whereas in others circulating antibodies disappear after IFN withdrawal.
2. Data on the evolution of IFN-related thyroid disease after IFN treatment are controversial. Some authors have reported complete recovery of thyroid function within a few months after IFN withdrawal.
3. However, others have reported only a partial reversal of thyroid dysfunction. These contrasting results may be due to either the variable length of follow-up after IFN withdrawal or the criteria used to define the recovery from thyroid disease. A single case of severe hypothyroidism resolved spontaneously after IFN withdrawal. However, the underlying autoimmune process usually persists.
4. However, even years later thyroid autoantibodies may reappear. As previously discussed, patients developing thyroid autoimmune disease during IFNα appear to be genetically predisposed. For this reason, the relapse of circulating thyroid antibodies has occurred several years after IFN has been discontinued.
5. Also, hypothyroidism may occur several years after IFN withdrawal due to the progression of the thyroid autoimmune process. The thyroid autoantibody pattern at the end of IFN therapy may be a reliable marker for the subsequent outcome of thyroid function. Thus, patients with high titers of thyroid autoantibodies and those with coexistent TgAbs and TPOAbs at the end of IFN treatment have an increased risk to develop hypothyroidism in the following years, supporting the hypothesis that the activity of the intrathyroidal autoimmune process may be reflective of peripheral autoantibody patterns.
6. Finally, euthyroid patients with a previous episode of IFN-induced thyroid dysfunction are prone to develop altered thyroid function when exposed to excess iodine.
Journal of Clinical Endocrinology & Metabolism
Aug 2004
Interferon-α-Related Thyroid Disease: Pathophysiological, Epidemiological, and Clinical Aspects
http://jcem.endojournals.org/content/89/8/3656.full
__________________
♫With Interferon I not sure baseline thyroid antibodies really has all that much to do with it. Sorry this isn't more definite. I just don't think the resilience of thyroid function is as easy to reliably predict as say Hgb levels♫
I think maybe you wanted to start a new thread? Try and create a new one. Now you just posted it as a comment to someone elses thread. Hope you understand my point :) then you will probably get more answers to your post :) good luck
I am 56 years old I was informed i had HCV in 1998. Every doctor I saw said liver enzymes were not elevated enough for conecern. i have been sick, really sick for a year now. I have chirosis as well now and they do an mri everythre months and i have had one biopsy done thank GOD no cancer. The doctor opriginally told me i was not a candidate for injections because i was too sick, he wanted me evaluated for a transplant but my meld score was only 8 that was in january in march it was 12. It has to reach 15 before you can be evaluated even though my daughter wants to be a living donor and is a match; but then he said yes and referred me to a liver doctor closer to home to start treatment. It took two months to get initial appt. Then three months to see the nurse who travels there to gibv instructional classes, then another two months for approval of treatment from health care provider and anothe rmonth for appt with doctor. The doctor ordered blood work to start theropy. it took three weeks and no one called i picked up the lab results and took them to the doctor myself and no one called they said the nurse is only thr\ere every three months. In the meantime i was gettin other symptoms so they did an mri of my head and now found a tumor it took three weeks for appt for mri and another month to get back in to nurologist whom ordered a second mri of my head and now the liver doctor will not start treatment until the nureologist clears me. I also have disc problems in my back and rhumetoid artheritis and osteroperosis. hypertention,chirosis enlarged spleen,COPD, I do not undrstand why i have such deep bone pain in my legs it is not the artheritis. can anyone explain? i think I should have a bone scan done. My problem is that its been a year now and i still have not started the treatments,after having the virus so many years.
Hi, sister from Norway, how are you doing? I am realy suprised to hear that the doctors in US treat low HB. Hier they doe often... nothing. EPO is quite expencive just like transfusion. And they have side effects. That's what they told me when I asked (bagd)for.
With HB 6.0 I coudn't walk the stairs, I coudn't do much, had problems with breathing and pijn in the chest. I saw black before my eyes. But I am stil alive. I can breath now and try to walk a little outside every day.
It was hard at first, but it seams that it gets easyer after a while. Like my body gets used to a low HB. Soort compesation. I had not only low HB but everything was low by me. Eritrocites, leukocites etc
I hope that you soon feel beter
With HB 6.0 I coudn't walk the stairs, I coudn't do much, had problems with breathing and pijn in the chest. I saw black before my eyes. But I am stil alive. I can breath now and try to walk a little outside every day.
It was hard at first, but it seams that it gets easyer after a while. Like my body gets used to a low HB. Soort compesation. I had not only low HB but everything was low by me. Eritrocites, leukocites etc
I hope that you soon feel beter
Hi from Europe! Not so many of us here ;)
I am 100% sure that hgb is mesured the same way in Europe as in US. It's not that I am glad to hear that you were anemic all the way through treatment, it's just that finally I hear someone else on tx without getting helper drugs for it (Ep/Procrit). I'm getting blood transfusions instead. Seems like the "protocols" for treatment in some European countries are different from the protocols used in US. It's been frustrating. Not good commercial for our health system..
Sorry to hear about your thyroid problems. I hope you will recover soon and feel better and have your enegy back.
Hugs from sister in Norway :)
I am 100% sure that hgb is mesured the same way in Europe as in US. It's not that I am glad to hear that you were anemic all the way through treatment, it's just that finally I hear someone else on tx without getting helper drugs for it (Ep/Procrit). I'm getting blood transfusions instead. Seems like the "protocols" for treatment in some European countries are different from the protocols used in US. It's been frustrating. Not good commercial for our health system..
Sorry to hear about your thyroid problems. I hope you will recover soon and feel better and have your enegy back.
Hugs from sister in Norway :)
The complete blood count (CBC) is a blood test used to measure of the concentration of white blood cells, red blood cells, and platelets in the blood.
Thank's, I am glad I talk with you all. Tommorow I have also app. with my doctor. I have much question's for him. I dont know what's CBS?
Yes, my HB was very low; at one point was 5.9. De doctor did not give me anything. Later it went to 6.5. For de months I was able to live with it. Don't ask how....
Regards to all
Yes, my HB was very low; at one point was 5.9. De doctor did not give me anything. Later it went to 6.5. For de months I was able to live with it. Don't ask how....
Regards to all
Hello,
All I can offer is my experience. I went through a 48 week Peg-intron/With 1000 mg of Ribavirin in 2007, I stopped all meds at that time, but looking back some of the meds for side effects I should have tapered off gradually.
At about week 4 post treatment I tried to work and was exausted after an hour,all said it took about 4 monthe to get my strength back will a bit of exersise each day. I dont know enough about the thyroid condition but My doc during treatment kept an eye on mine as the treatment can mess with tyroid as well cause other problems. Talk to your doc about that.
Congrats for being virus free so far, looks like the double treatment worked, that bin itself is HUGE.
All I can offer is my experience. I went through a 48 week Peg-intron/With 1000 mg of Ribavirin in 2007, I stopped all meds at that time, but looking back some of the meds for side effects I should have tapered off gradually.
At about week 4 post treatment I tried to work and was exausted after an hour,all said it took about 4 monthe to get my strength back will a bit of exersise each day. I dont know enough about the thyroid condition but My doc during treatment kept an eye on mine as the treatment can mess with tyroid as well cause other problems. Talk to your doc about that.
Congrats for being virus free so far, looks like the double treatment worked, that bin itself is HUGE.
Hi Pie: I am not knowledgeable about thyroids, but I can touch on your other points. I takes about 4 weeks for my blood chemistry to recover to the normal ranges. The normal range for most women's hemoglobin is about 12-16. I'm unaware of it being different between the Netherlands and the U.S. It sounds like your hemoglobin was lower that normal when you started treatment. Maybe your units per measure for your test is different, but Rexx is from Switzerland, and Bovary is from Norway, and their hemoglobin does not seemed measured in different units. Your recovery may take longer because you are starting from a very low hemoglobin and your typical hemoglobin range is on the low side. Oh, your English communicates well enough. Cheers, GB
You are 10 days post treatment, so it will take several weeks for the meds to slowly leave your system. Some recover very quickly, while others may take a few months or longer. My thyroid also went hypo and is slightly above the range, so I'm monitoriing it for the next few months to see if it comes back down. I have an appt tomorrow to see the results.
Your tsh went much higher and it might take some time to figure out the correct dose of Thrax to keep your tsh at the correct level. Hopefully your doctor is watching this carefully. Watch your cbc and tsh levels after treatment and hopefully in the near future you will begin to feel better. Try to get out for walks, get some fresh air, do things you enjoy, since your body just went through a very challenging tx. Wish you the best. Oh, and your english is fine. ;)
Your tsh went much higher and it might take some time to figure out the correct dose of Thrax to keep your tsh at the correct level. Hopefully your doctor is watching this carefully. Watch your cbc and tsh levels after treatment and hopefully in the near future you will begin to feel better. Try to get out for walks, get some fresh air, do things you enjoy, since your body just went through a very challenging tx. Wish you the best. Oh, and your english is fine. ;)
You are 10 days post treatment, so it will take several weeks for the meds to slowly leave your system. Some recover very quickly, while others may take a few months or longer. My thyroid also went hypo and is slightly above the range, so I'm monitoriing it for the next few months to see if it comes back down. I have an appt tomorrow to see the results.
Your tsh went much higher and it might take some time to figure out the correct dose of Thrax to keep your tsh at the correct level. Hopefully your doctor is watching this carefully. Watch your cbc and tsh levels after treatment and hopefully in the near future you will begin to feel better. Try to get out for walks, get some fresh air, do things you enjoy, since your body just went through a very challenging tx. Wish you the best. Oh, and your english is fine. ;)
Your tsh went much higher and it might take some time to figure out the correct dose of Thrax to keep your tsh at the correct level. Hopefully your doctor is watching this carefully. Watch your cbc and tsh levels after treatment and hopefully in the near future you will begin to feel better. Try to get out for walks, get some fresh air, do things you enjoy, since your body just went through a very challenging tx. Wish you the best. Oh, and your english is fine. ;)
i think you need to talk with deb...nygirl....shes been through the thyroid trouble...i didn't have that but i did have very low hgb throughout tx....in a few hours other will be here to help.....billy
Thank you. Maby as you sad, I must be patient and drink more water.
I feel so alone hier with my thyroid. There is nobody else who had the same problem. My TSH was always goed (1.5) untill somewhere 26th week with Interferon and Riba. It went in 2 weeks up to 75. Now I take medication Thyrax -hormon and my TSH is 2.0. That's OK but I don't know if I have to take it my all life. Or does the thyroid recovers just like the rest of you body after threating hepatitis C?
I feel so alone hier with my thyroid. There is nobody else who had the same problem. My TSH was always goed (1.5) untill somewhere 26th week with Interferon and Riba. It went in 2 weeks up to 75. Now I take medication Thyrax -hormon and my TSH is 2.0. That's OK but I don't know if I have to take it my all life. Or does the thyroid recovers just like the rest of you body after threating hepatitis C?
my symptoms up to 6 weeks post tx were pretty bad...then much better after that...at almost 6 months post i still have some stuff going on but not too bad and slowly getting better....make sure you drink water...maybe more then before tx..have you checked your vitamins...d and b?? my primary doc said to me that when your young if you get sick one day it can take 2 days to recover..when older it can take a week to recover...she said you've just been down on tx for months...your out of shape...it could take many months before feeling normal again....i would give it time...get past the first month or two...and in fact maybe look at a year to recover all the way....good luck...billy
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