Aa
TSH is 66 @ Tx Wk 16
I just left my doctor's office today and they called when I got home and said I must see an endo NEXT WEEK. If this can't get controlled immediately they are discontinuing my treatment. Anybody ever have this? The thing is I feel great and I hardly sleep at all since on treatment. According to my doctor, I should be lethargic and gaining weight. I am so confused and disappointed. I really want to get rid of this HCV!!!
TSH is a bit high (normal range: 0.3-4 mlE/L), T4 is a bit low (normal range: 12-22 pmol/L). (These normal ranges are the ones stated in my laboratory report. Better check so they are the same for a man in the US.) Looks like your thyroid is taking a bit of a blow during tx to me. Hypothyroidism. I suggest you read the paper I posted above about treatment-induced thyroid issues.
http://jcem.endojournals.org/cgi/reprint/89/8/3656.pdf
What tx week are you in? Thyroid issues during tx might go away post tx, but they might also become permanent.
http://jcem.endojournals.org/cgi/reprint/89/8/3656.pdf
What tx week are you in? Thyroid issues during tx might go away post tx, but they might also become permanent.
just got part of my lab work back tsh 6.184 t4 9.1 heart rate 116 resting dr wants nuclear stress test. waiting for 12 week hcv pcr wbc 3.0 can anyone tell me what this means?
yes, you remember that old thread of mine.... here it is again. I only hesitated to post it because it can be confusing to newbies, not to mention discouraging to try to get treatment for this. (even when you are low docs don't want to treat, as a couple gals in here have already discovered).
Nevertheless, treating the thyroid alone, if the pituitary is also effected is not good medicine.
http://www.medhelp.org/posts/show/324670
Nevertheless, treating the thyroid alone, if the pituitary is also effected is not good medicine.
http://www.medhelp.org/posts/show/324670
Thanks, your answers help me settle down and be able to just wait and see what the Endo finds out. Sounds like I might need more specific lab work before anyone can say what is going on. I also had planned to do 72 weeks if I clear by 24. But now they are threatening to discontinue my meds if this doesn't get under control. I am keeping faith that the Endo will agree to let me stay on the meds. I will be back after Jan 13th and let you know! Thanks again for your help.
First off, I'm sorry your VL didn't come back as undetecable yet. Realize that your best chance for SVR at this point is extending treatment to 72 weeks assuming that you clear by 24 weeks. I didn't clear until around week 20, so I did 72 weeks after reviewing the literature (most of which I found on this site).
I'm not aware of the info that merryBe passed on about pituitary insufficiency, which doesn't mean that it's not true. I'm a head and neck surgeon who mostly removes thyroids and not an endocrinologist. An endocrinologist would know much more about the pituitary than I do. We do know that treatment with INF and ribavirin does affect the thyroid directly. Given that your TSH is elevated, it's most likely that you will find your T4 level to be low when it is checked which suggests that it's the thyroid itself that is the problem.
As far as your carpal tunnel symptoms, yes, that is definitely associated with hypothryoidism. Let your doctor know that your symptoms have recurred.
Keep us posted.
Jeff
Facta non Verba
I'm not aware of the info that merryBe passed on about pituitary insufficiency, which doesn't mean that it's not true. I'm a head and neck surgeon who mostly removes thyroids and not an endocrinologist. An endocrinologist would know much more about the pituitary than I do. We do know that treatment with INF and ribavirin does affect the thyroid directly. Given that your TSH is elevated, it's most likely that you will find your T4 level to be low when it is checked which suggests that it's the thyroid itself that is the problem.
As far as your carpal tunnel symptoms, yes, that is definitely associated with hypothryoidism. Let your doctor know that your symptoms have recurred.
Keep us posted.
Jeff
Facta non Verba
I am kinda brain foggy lately because of this TSH thing and the numerous phone calls and two days it took to get the insurance referral and appointment for the middle of January AND just found out my 16 week PCR is not UND but down from 12 week 950 to 55 week 16. Really disappointed about that. Been kinda out of it today - just going thru the motions if you know what I mean.
But are you saying my pituitary gland is working normally because it was able to produce so much TSH in response to my thyroid failing? I asked the nurse, they did not do a T4 or T3. And Facta, I was scheduled for bi-lateral Carpal Tunnel Surgery last May, the same month I was diagnosed with HCV. After the diagnosis, I quit my job and quit using my hands as much. The last few weeks, my arms/hands/fingers are becoming numb every night/morning and when typing, blow drying my hair etc. Should I mention this and take my ENG from last May to my Endo appt? Could it be related?
I finally had to tell myself to just accept this - keep taking my shots and riba. My Endo appt is the same day as my 20 week Hep f/u. If they take me off my meds then so be it. If they let me wait until 24 weeks and become UND and let me stay on the meds, that is okay too. I am too tired of worrying about it. I am finding that the major thing that makes me feel sick on these meds is stress. When I get stressed, I want to go to bed. If I just keep my chin up, I feel fine - even quite normal some times.
But are you saying my pituitary gland is working normally because it was able to produce so much TSH in response to my thyroid failing? I asked the nurse, they did not do a T4 or T3. And Facta, I was scheduled for bi-lateral Carpal Tunnel Surgery last May, the same month I was diagnosed with HCV. After the diagnosis, I quit my job and quit using my hands as much. The last few weeks, my arms/hands/fingers are becoming numb every night/morning and when typing, blow drying my hair etc. Should I mention this and take my ENG from last May to my Endo appt? Could it be related?
I finally had to tell myself to just accept this - keep taking my shots and riba. My Endo appt is the same day as my 20 week Hep f/u. If they take me off my meds then so be it. If they let me wait until 24 weeks and become UND and let me stay on the meds, that is okay too. I am too tired of worrying about it. I am finding that the major thing that makes me feel sick on these meds is stress. When I get stressed, I want to go to bed. If I just keep my chin up, I feel fine - even quite normal some times.
TSH is produced in high quantity only if the pituitary is working at normal levels.
HCV patients have a much higher rate of pituitary insufficiency than the normal populace.
Why this is has not been definitively attributed to the HCV, but the lower function is well documented.
In which case, the extra TSH may not be made and hence the body's ability to self correct is limited.
My pituitary function is 20% of normal so this can be part of the problem. The truest tx for this is to correct the pituitary if the IGF-1 level is too low.
However, this is expensive, requiring daily injections of HGH, ergo most docs only correct for the thyroid and leave the pituitary untreated.
In fact most docs, including mine and several others of patients in this forum, don't even know that HCV and pituitary insufficiency are synonymous. They were trained to believe "it is extremely rare" and have not kept pace with the research.
mb
HCV patients have a much higher rate of pituitary insufficiency than the normal populace.
Why this is has not been definitively attributed to the HCV, but the lower function is well documented.
In which case, the extra TSH may not be made and hence the body's ability to self correct is limited.
My pituitary function is 20% of normal so this can be part of the problem. The truest tx for this is to correct the pituitary if the IGF-1 level is too low.
However, this is expensive, requiring daily injections of HGH, ergo most docs only correct for the thyroid and leave the pituitary untreated.
In fact most docs, including mine and several others of patients in this forum, don't even know that HCV and pituitary insufficiency are synonymous. They were trained to believe "it is extremely rare" and have not kept pace with the research.
mb
Here is some info about how the thyroid works that may help. First off, the thyroid gland is in the lower central neck and overlies the trachea (windpipe). It secretes thyroxine (T4) which is exactly the same substance as Synthroid and Levoxyl. It is bound to protein in the blood and isn't the active form of the hormone. At the tissue level it is converted to T3 which is the active form, which essentially regulates metabolism.
Another hormone, TSH (Thyroid Stimulating Hormone) is made by the pituitary gland at the base of the brain, enters the bloodstream and causes the thyroid gland to secrete T4. This T4 enters the bloodstream and does the job as described above. It also reaches the pituitary gland and turns off TSH secretion. It's pretty much how the heating system works in your house. The thermostat (pituitary gland) turns on the furnace (thyroid gland) which heats up the room and turns the thermostat (pituitary gland) off.
So, if your thryoid gland begins to fail the pituitary makes more TSH to try to force the thyroid to make more T4. Once the gland fails, the TSH skyrockets in an attempt to force the thyroid to do its job. This is classic hypothyroidism -- TSH is high and T4 is low. Hyperthryoidism (hyperactive thyroid) is just the opposite -- too much T4 and almost undetectable TSH. The most common cause of hyperthryoidism is autoimmune disease such as Grave's disease.
So how quickly should you spring into action about an elevated TSH? First off, when done alone it's a screening test. You need to know your T4 (usually free-T4) and T3 to get the whole picture. Assuming you are in a hypothyroid state, you probably haven't been that way too long. It takes 8 days for your body to get rid of half the T4 (i.e., half-life is 8 days) in your bloodstream, and it take about 5 half-lives, or 40 days, to get down to zero. That's 6 weeks, and it's highly unlikely that you became hypothyroid right after starting treatment. That's why I assume you haven't been in a severe hypothryoid state for a long time.
The bottom line is that having a TSH of 66 isn't usually a catastrophe and it's usually not too hard to get things back into some semblance of order. Your body has the ability to compensate for low levels of T4 early on in the disease. On the other hand, stress and illness (like being on INF and riba) can make hypothryoidism more serious, and you're older like me :-) so it's nothing to ignore either.
Like I said above, it's usually not too hard to get things close to normal with Synthroid, but that's not to say that you would be able to start treatment with Synthroid and be back to normal in a week. It can take some time to regulate TSH and T4 levels.
The usual disclaimer of saying that you need to talk to your doctor for medical advice applies here. I'm a physician, but nor YOUR physician, so you need to work out the details with your doctor.
Jeff
Facta non Verba
Another hormone, TSH (Thyroid Stimulating Hormone) is made by the pituitary gland at the base of the brain, enters the bloodstream and causes the thyroid gland to secrete T4. This T4 enters the bloodstream and does the job as described above. It also reaches the pituitary gland and turns off TSH secretion. It's pretty much how the heating system works in your house. The thermostat (pituitary gland) turns on the furnace (thyroid gland) which heats up the room and turns the thermostat (pituitary gland) off.
So, if your thryoid gland begins to fail the pituitary makes more TSH to try to force the thyroid to make more T4. Once the gland fails, the TSH skyrockets in an attempt to force the thyroid to do its job. This is classic hypothyroidism -- TSH is high and T4 is low. Hyperthryoidism (hyperactive thyroid) is just the opposite -- too much T4 and almost undetectable TSH. The most common cause of hyperthryoidism is autoimmune disease such as Grave's disease.
So how quickly should you spring into action about an elevated TSH? First off, when done alone it's a screening test. You need to know your T4 (usually free-T4) and T3 to get the whole picture. Assuming you are in a hypothyroid state, you probably haven't been that way too long. It takes 8 days for your body to get rid of half the T4 (i.e., half-life is 8 days) in your bloodstream, and it take about 5 half-lives, or 40 days, to get down to zero. That's 6 weeks, and it's highly unlikely that you became hypothyroid right after starting treatment. That's why I assume you haven't been in a severe hypothryoid state for a long time.
The bottom line is that having a TSH of 66 isn't usually a catastrophe and it's usually not too hard to get things back into some semblance of order. Your body has the ability to compensate for low levels of T4 early on in the disease. On the other hand, stress and illness (like being on INF and riba) can make hypothryoidism more serious, and you're older like me :-) so it's nothing to ignore either.
Like I said above, it's usually not too hard to get things close to normal with Synthroid, but that's not to say that you would be able to start treatment with Synthroid and be back to normal in a week. It can take some time to regulate TSH and T4 levels.
The usual disclaimer of saying that you need to talk to your doctor for medical advice applies here. I'm a physician, but nor YOUR physician, so you need to work out the details with your doctor.
Jeff
Facta non Verba
I understand it to be that if you have Hashimoto's disease you have thyroid antibodies. So if we have no thyroid antibodies, we stand a greater chance of our thyroid returning to normal post tx.
I love you too.
"66 man oh man. That is so high, you must be pretty damn strong to deal with it and not be floored! Treatment is hard enough on people but with something like that - wow! I respect the amount of work you are doing BIG TIME!"
I just loved your post above. You say what is on your mind, you say it straight out. WE NEED YOU!
"66 man oh man. That is so high, you must be pretty damn strong to deal with it and not be floored! Treatment is hard enough on people but with something like that - wow! I respect the amount of work you are doing BIG TIME!"
I just loved your post above. You say what is on your mind, you say it straight out. WE NEED YOU!
I am not that good at this stuff either, but I do know that when my TSH was elevated (only to 7.3 which is nothing compared to skersj's 66), they said it was good that my T4 was normal.
I read this on a Swedish site (internetmedicin.se):
"HYPOTHYROIDISM
STAGES OF DISEASE:
Autoimmune thyroid disease without symptoms:
TPOab detectable. TSH, (free) T4 and T3 are normal.
(20-25% of healthy female population)
'Subclinical' hypothyroidism:
TPOab detectable in most cases. TSH elevated. (Free) T4, T3 are normal.
About 25% of this group have mild, unspecific symptoms.
Mild hypothyroidism:
TPOab detectable in most cases. TSH elevated. (Free) T4 lowered. (Free) T3 normal. Mild symptoms.
Pronounced hypothyroidism:
TPOab detectable in most cases. TSH elevated. (Free) T4 and T3 are lowered.
Pronounced symptoms."
I read this on a Swedish site (internetmedicin.se):
"HYPOTHYROIDISM
STAGES OF DISEASE:
Autoimmune thyroid disease without symptoms:
TPOab detectable. TSH, (free) T4 and T3 are normal.
(20-25% of healthy female population)
'Subclinical' hypothyroidism:
TPOab detectable in most cases. TSH elevated. (Free) T4, T3 are normal.
About 25% of this group have mild, unspecific symptoms.
Mild hypothyroidism:
TPOab detectable in most cases. TSH elevated. (Free) T4 lowered. (Free) T3 normal. Mild symptoms.
Pronounced hypothyroidism:
TPOab detectable in most cases. TSH elevated. (Free) T4 and T3 are lowered.
Pronounced symptoms."
I believe...and could be wrong...that if your T3 and T4 levels are normal...yet your TSH is elevated or escalated..that it's probably indicative of "hasimoto's thyroidism"...which is an "auto-immune" disorder...common for women undergoing Hep C treatment.
I never understood the T4 but yes it IS an important part of the equation. I just am not really that smart and only a bit was able to leak in with all the scientific stuff - enough just enough and that was all that mattered :)
Love you Za.
Love you Za.
Every time they tested my TSH, they also tested "T4, free". Have you checked if they took that test on you? If so, what was the result?
I don't know what I would do with out you all.
Hey that's how all of us "oldies" feel too. Without this forum I would NOT have made it through. Back when I treated there were people who calmed me down and kept me going when I really, seriously was going to quit.
66 man oh man. That is so high, you must be pretty damn strong to deal with it and not be floored! Treatment is hard enough on people but with something like that - wow! I respect the amount of work you are doing BIG TIME!
Go to the endo.....they'll fix you up and get it under control. Then, you will be able to finish and get rid of this disease for good. That IS the whole goal. It gets hard, you do get kicked repeatedly but when you can post your SVR post you will realize it was ALL worth it!
I'll be watching to see what happens. How are your other numbers? Hemo good?
PM me if you have any questions. I'm NYgirl for the next two weeks then back to work after my holiday vacation (not going anywhere) then I"m NYgirl7 during the weeks. I'm just about always on at work and my boss even laughs at me cause he see's me on the forum and he's like "still trying to save the world?" he's a good guy and I work hard so he never complains. He really supported me when I couldn't tell my azz from my elbow on treatment - there are good people in the world so cheer up and stay STRONG!
debby
Hey that's how all of us "oldies" feel too. Without this forum I would NOT have made it through. Back when I treated there were people who calmed me down and kept me going when I really, seriously was going to quit.
66 man oh man. That is so high, you must be pretty damn strong to deal with it and not be floored! Treatment is hard enough on people but with something like that - wow! I respect the amount of work you are doing BIG TIME!
Go to the endo.....they'll fix you up and get it under control. Then, you will be able to finish and get rid of this disease for good. That IS the whole goal. It gets hard, you do get kicked repeatedly but when you can post your SVR post you will realize it was ALL worth it!
I'll be watching to see what happens. How are your other numbers? Hemo good?
PM me if you have any questions. I'm NYgirl for the next two weeks then back to work after my holiday vacation (not going anywhere) then I"m NYgirl7 during the weeks. I'm just about always on at work and my boss even laughs at me cause he see's me on the forum and he's like "still trying to save the world?" he's a good guy and I work hard so he never complains. He really supported me when I couldn't tell my azz from my elbow on treatment - there are good people in the world so cheer up and stay STRONG!
debby
Thanks to all for the encouraging words. I feel better. I did ask the doctor at the time to repeat - it is 66 with normal range 2-5. She said see an endo ASAP next week. Thank you all for answering. I don't know what I would do with out you all. It helps me settle down and turn off the panic button!! It's just that this treatment is such a roller coaster. I watch this forum and see people doing fine and then out of nowhere - kicked in the gut again!
In case you do not manage to get to an endo next week:
Normal testing interval for TSH is every 12 weeks during tx: week 12, 24, 36 and so on. This implies to me that even if one's TSH is elevated the emergency to immediately get to an endo cannot be all that great. If it was, we would have to be tested much more frequently.
Normal testing interval for TSH is every 12 weeks during tx: week 12, 24, 36 and so on. This implies to me that even if one's TSH is elevated the emergency to immediately get to an endo cannot be all that great. If it was, we would have to be tested much more frequently.
First off - go see the endo. They will line you up with a nuclear imaging scan and put you on Synthroid. I never heard of a 66 (did you mean 6.6?) TSH but I went hyper and then hypo (normally what happens with an autoimmune thyroid problem from the interferon) and have been on it ever since week 24. I finished all 72 weeks hand have been SVR for two years.
I ALSO had a VL at week 12 (400). I extended treatment and have never looked back.
See what your 24 week report says. You should be getting past the hardest time soon and it will be downhill from there. I bet you are UND at 24 and the doc gets your thyroid numbers fixed up fast.
PS The synthroid keeps my TSH right at .63 now which is perfect for me. I just gotta take it once a day and it works fine. If that was the price for SVR then I guess it was worth it.
GOOD LUCK!
I ALSO had a VL at week 12 (400). I extended treatment and have never looked back.
See what your 24 week report says. You should be getting past the hardest time soon and it will be downhill from there. I bet you are UND at 24 and the doc gets your thyroid numbers fixed up fast.
PS The synthroid keeps my TSH right at .63 now which is perfect for me. I just gotta take it once a day and it works fine. If that was the price for SVR then I guess it was worth it.
GOOD LUCK!
The one thing we do hope will not happen to us once we decide to treat is that we will get permanent damage from the tx drugs. So when the thyroid starts to act up all these emotions arise about our decision to tx. I have been there myself, but luckily I was at the very end of tx, not at week 16 like you are.
There are other thyroid tests you can take to try and determine where you are at. "T4, free" is one. "TPOAb" is another one to determine whether you have thyroid antibodies or not. If you have antibodies it is much more likely the hypothyroidism will be a permanent condition. If it makes it easier, the fact that your thyroid reacted, might imply that you had this issue with the thyroid coming sooner or later anyway. Tx just made it happen sooner.
I hope you get hold of an endo next week. With Christmas and all coming up. How frustrating. I am glad your husband is there to support you.
Za
There are other thyroid tests you can take to try and determine where you are at. "T4, free" is one. "TPOAb" is another one to determine whether you have thyroid antibodies or not. If you have antibodies it is much more likely the hypothyroidism will be a permanent condition. If it makes it easier, the fact that your thyroid reacted, might imply that you had this issue with the thyroid coming sooner or later anyway. Tx just made it happen sooner.
I hope you get hold of an endo next week. With Christmas and all coming up. How frustrating. I am glad your husband is there to support you.
Za
I can understand your worry and frustration. To try to put things into perspective for you, a friend of mine (not a Hep C patient) has been hypothyroid for many, many years and she has been on Synthroid for years and years. At her last check up, her TSH was in the 70's though she didn't really have bad symptoms. Her doctor just upped her dosage of Synthroid. So...yes, you don't want your TSH to continue to elevate but at least you know and you are working on getting a doc appt with the specialist who can then put you on meds. You will be okay...but, again, I understand your frustration. Synthroid is not some horrible drug to have to take. I am taking it and have been taking it since about week 4 of my TX.
Thanks for the study. I really like using them when making decisions. My doctor says I have to see an endo next week and btw that she is going out of town and she will see me when she gets back. I have no idea how I am going to get into see a new doctor on Christmas week. I am pretty sure most will be on vacation. I am beginning to wish I would have listened to jmjm530 and copyman back at 12 weeks when I found out I still had a VL of 950 and just cut my losses and quit treatment. My doctor was not going to do a VL test this week (WK 16) but I talked her into it by saying I was considering waiting for the new drugs if not clear this week. I had to agree to pay for it if my insurance did not. I was really just bluffing because I wanted the test so bad and I am willing to pay for it out of pocket. But then they called me with the rest of the lab results and now I am NOT bluffing. If I am not clear I AM quitting and waiting on the new drugs. IF I and UND then it is going to be a much tougher decision. Do I treat Stage 1 Grade 2 and try to clear (just because I want to be HCV clear) and risk taking Synthroid the rest of my life. Heck, I may have to take it the rest of my life anyway. My TSH is 66 and the normal range is 2 -5. I can not for the life of me figure out why I feel so normal and this month's blood wk is: TSH is 66, hgb 9.6, whites 2.1 and neuts 59%. I quickly walked up 5 flights of stairs yesterday, started breathing harder on the 3rd but didn't have to slow down until the 5th flight which I would think is pretty normal for a 50 year old. Is my body totally jacked up or what? Am I about to crash and burn???!!! I am sick of all of this at this point and ready to quit worrying about all of it.
I had a bit of a problem with hypothyroidism at the very end of my 72 week tx. I was lucky that it resolved itself post tx.
http://jcem.endojournals.org/cgi/reprint/89/8/3656.pdf
This paper is a good summary on interferon-related thyroid disease. At the bottom of page 4 there is a chart which tells whether or not to continue tx'ing if you get different thyroid issues.
Best wishes and please keep us informed of how you are doing,
Za
http://jcem.endojournals.org/cgi/reprint/89/8/3656.pdf
This paper is a good summary on interferon-related thyroid disease. At the bottom of page 4 there is a chart which tells whether or not to continue tx'ing if you get different thyroid issues.
Best wishes and please keep us informed of how you are doing,
Za
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
