Good TSH news and other post

[layla]

I finally went and got thyroid labs and my TSH is 1.8! Now this may seem normal to you but my story is I lost my thyroid on tx. I had no sx for almost my first 3 months on tx then suffered terrible with what I now beleive was hyperthyroid. After some time it obviously turned to hypo. I went at least a year before dx. After test and doc visits the docs determined it was for good and eventually my meds got increased to 100 a day. For about 9 months I was fine on that but I kept getting this nausea the docs could not figure out even though I kept insisting it was my thyroid. Thyorid test were fine. They figured it was constipation even though I had no problems there. After mega dollars in test which all came back normal. I quit calling them. Now I start getting heart palpitations and then sweats. I am now positive it is my thyroid so I decide to lower my meds on my own to half, 100 every other day. Within 2 weeks the palps stopped but the sweats got worse so I lowered my meds more to 88 every other day. Sweats got a little better but nausea is back so I dropped it to 77 every other day and went for a lab which they just called and it is 1.8. I am actually taking 50 every other day now. I was told there was almost no chance of my thyroid recovering. Now I don't know if I just need very low doses or my body is adjusting to being off the meds and is just out of wack for a bit or my thyroid function is actually comiing back. Regardless I am happy to take less meds and have hope for my thyroid. Have a nice day!
Docsgold, a big thanks to you!!

[Docsgold]

You are so welcome!!  I am soooooo glad you got some labwork.   I just got back into town and am so glad to hear you got your levels.  I am glad your new doc is going to check your labs every two weeks.  You should have told him if doctors could take the time to properly educate patients and be available, then you would not have to do your own legwork.  :)  That was ugly, hahahaha.  Dropping the meds every two weeks is a bit much, I would have to agree with him there, but as we know, treat the symptoms.........not just normal/abnormal labwork.  Be careful with the dosing.

Sweats could be menopausal, but I am having them too and I am definitely not menopausal.  I am wondering if some of these symptoms are just brand related, by that I mean generic vs. brand.  Will check on you later and glad to see your post.

[cuteus]

doesn't it make feel good to know you know more than some experts? is because you are the only expert of YOUR body!
gl!

[honey1616]

Layla,,,Great News!  I know that has been your biggest problem since tx and glad to see you are doing so well!

[layla]

Thanks for the support, it is much appreciated as always. You are all great. I did finally see my doc today and he wasn't wild about what I have been doing. He was prepared as he had all my labs from my hep doc. He is not convinced this is my thyroid but says ok to stay on the lower dose I am taking but to come back in for labs in two weeks. He also wants me to take my temp every time I have sweats. He said if I have fevers he wants to take some other test. So here I am driving down the road with a thermometer in my mouth. Haha. He said maybe it could also be perimenopause. Maybe, but everyone else in my family was 10 years older than me and the heart palps, sore throat, dry eyes etc make me think it is thyroid. He also said I need to stay in tough with him more because it could also be some kind of infection. I had surgery last summer on my last week of tx and had a throat injury from it. He is going to check my record and see if I had a chest exray and if not he wants me to have one. Man I just don't want to waste medical resources. I hope hefinds I already had one. I am very sick of this. The good thing is he did say he does not at all think it is HCV and he will call me as soon as my PCR gets to him next week. He must like me since he gave me his email ahahahaha he is going to be sooorry oh and he told me to stay off the internet again ahahahahaha. I have to say I actually laughed when he said that and then he did too. LL

[willing]

great news Layla - this looks very promising. I don't think we should EVER underestimate our body's capacity to heal past damage once normal conditions are restored, and self-awareness/feedback is an essential part of finding our way back.

[dutch_boy]

layla, I laughed when you said your doctor told you to stay off the internet.....everytime I see my doctor he says the same thing to me. I told him politely that I've learned more here than anywhere else!  You all are great and I think WE are our best resource for information and support!
Scott

[layla]

Britgirl, I am taking 50 every other day because my prescription is for 100 and they are easiest to break in half. I did not do this with a doc so I don't have another script except the 88's which I will take 1/2 of the next week if the sweats persist. I do see my internal med doc today so I shall see what he thinks. Maybe I should just stop but I did hear you should not stop suddenly.
Asmile4u, Yes you are responding. My doc use the 6 month mark before considering stopping tx and he told me some docs use 3 months due to insurance restriction more than anything else. You should keep treating. Since you did not get a 2 log drop but are responding you should look at perhaps increasing your meds for a time then doing 48 weeks from clearing. That is the time my hepatologist recommended for me when not clear at 12 weeks even with a 2 log drop. LL

[dutch_boy]

You DID respond to the tx....just not quite as much as the doctors would hope for but don't loose sight that your VL went down dramatically.....I would do exactly what your intentions are at this point....TELL your doctor you want to remain on treatment....get tested often until you "clear" and then do the remaining 36 weeks.  I don't know the complexities of insurance covering tx longer if you didn't get the 2-log drop...a question for others on this site. You HAVE come too close to give up so fight to continue. You are in a good situation with having 2 mos of drugs just in case you have to find a new doctor.  I'm sure many others will give you more concrete advice on your situation....there have been MANY here who have gone through this specific issue.  I wish you the best of luck.
Scott

[dutch_boy]

You DID respond to the tx....just not quite as much as the doctors would hope for but don't loose sight that your VL went down dramatically.....I would do exactly what your intentions are at this point....TELL your doctor you want to remain on treatment....get tested often until you "clear" and then do the remaining 36 weeks.  I don't know the complexities of insurance covering tx longer if you didn't get the 2-log drop...a question for others on this site. You HAVE come too close to give up so fight to continue. Try to quickly find a new doctor who IS It sounds like your hanging in there o.k. on treatment so far which is encouraging.  I'm sure many others will give you more concrete advice on your situation....there have been MANY here who have gone through this specific issue.  I wish you the best of luck.
Scott

[ASmile4U]

Screw up aside...I got my 12 week PCR results today.  I am in fact still positive on the qualitative test.  My VL went from 1.9 pre tx to 44,000...so not a 2 log drop either.  Haven't actually talked to the doc, just his nurse...initially he told me if I didn't have a 2 log drop he would stop tx.  I basically told him we'd deal with it if and when need arises.  Now that discussion is of utmost importance.  My game plan is to continue tx since I have not yet had any serious sx.  Platelets came up again this week to 76, the highest they've been since beginning.  I feel purrrr t good most days, except today of course.  I would like for him to test me every 4 weeks until at least week 24 to see if I clear...and from whatever point I actually clear do an additional 36.  From what I've learned here, I think this will give me the best shot for SVR.  Any suggestions on what I should do would be greatly appreciated...I just can't give up...I came too close to the 2 log drop.  If he won't continue to tx me, I have 2 months of meds on hand...buys me a little time to find another doc if need be.  I just keep telling myself it could have been worse...

[BostonGirl]

Hello Smile;
           You may not have gotten the " standard " 2 log drop, but you are responding and I might add quite well. Not everyone goes to zero at 12 weeks, some are slower to respond.

I think your goals are very realistic. Most studies recommend going 36+ weeks after the point of being undetectable. Then, there are other studies that say, if you don't clear by 12 weeks, then do 72 weeks, especially if you begin with a high viral load.

If your doctor is not willing to allow you to continue tx, then I would find another doctor. You are responding and sounds like you are handling tx well. Keep on fighting. It will all be over before you know it!

I was 55,967,000 prior to tx. My 3-4 week PCR was 303,000, more than a 2 long drop. But unfortunately my 12 week PCR was still at 18,000 and then the 16 week PCR 1600. It is going down, but very slowly.

I will be doing another viral load at week 20 ( end of this month ) and hoping to be clear by then. I am doing 72 weeks of tx. I only want to do this once. Good luck on your tx journey.

((((((((( Sue)))))))))))

[dutch_boy]

So SORRY about that annoyance I created above everyone!!  Riba fingers I guess!?

bostongirl; good luck to you on your 20 week PCR.  I'll be keeping my fingers crossed for you! I am just ahead of you as I just finished week 20.  Hope you are doing well.
Scott

[dutch_boy]

So happy to hear you are solving your own problems and not waiting for someone else to.  We all have to be very aware of our own health and unfortunately learn to self diagnose more often than not.....at least this has been my experience prior to my diagnosis of Hep C and now during the treatment.  I don't know how you kept from panicking through all this ...especially during your heart palpaltaions! I congratulate you on helping yourself.  It is another lesson we all must learn...to listen to our bodies and follow your instincts as rearfang said. Glad to hear you are feeling better. britgirl's suggestion may also be helpful.
Scott

[britgirl]

Really good news.Just one question; why don't you take 25mg a day instead of 50 every other day? I know pills of that strength exist cos I take them every day (one of 50 and one of 25)
Just a thought!

[layla]

Thanks for the nice words. I do not recommend doing this on your own but I could not get an appt with an endo doc until mid July and even then not with one I wanted to see and with the heart palps increasing I was worried. I know this does not mean my thyroid is going to be ok but who knows. It is certainly unnerving but I did not feel I had much of a choice. This whole experience with the HCV and thyroid has made my thinking about doc change quite a bit. I make sure to watch thing and educate myself in regard to my own health much more. Again thanks so much for the kind words. LL

[scruffy]

That is good news. It's too bad people are so often left to figure these things out on their own.I guess the lesson is to listen to our bodies. frank

[rearfang]

I'm so glad for your news. You were right to follow your instincts!
Lauren

[Califia]

Funny how we learn to be our best doctors.   Your instincts were right on the mark, but what about your medical team?  Any way you can find a new endo?  I'm so glad you're moving toward resolution, but to have to do it alone must be a little unnerving.   Anyway, from one who has gone through the thyroid wars, congratulations on making progress at last.

WoodbeGood:  Yep, amazing how much effect a little butterfly-sized gland can have on our general well-being.

[woodbeegood]

that's wonderful news! gives me hope, i too lost my thyroid while on tx-went hypo thought it was just sx from the meds but thanks to a close watch from my dr we caught if fairly quickly- once i started on synthroid started feeling better-even on the riba/peg-it's been 8 months on synthroid (6 mo post tx now) and still having to increase the dosage every other month or so-other than that i feel pretty good-who would have thought your thyroid could raise such havoc on your system?