Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by pinnacle1263 on Tue Aug 12, 2008 12:00 AM
I had a Thyroidectomy on May 9th. Started on 150 mcg of Synthroid on June 26th three days after RAI pill. After six weeks.....my TSH score is 46. My doctor was expecting it to be under 4.50. I am obviously not absorbing the Synthroid very well. Today he increased my dose of Synthroid to 200 mcg and told me to take cytomel for 2 weeks.
MY TSH was at 95 at the time of my RAI pill....so it is heading in the right direction...but it should be lower after six weeks...the Endo doctor was expecting it to be in normal range by now.
Has this happened to anyone else...such a high TSH score 6 weeks after being on Synthroid? I asked the doctor why I was not absorbing it very well...and he reallly had no answer other than to say...it happens to some people. Little disappointed...as I thought I would be over the hypo hell by now. For the record...I am a 6 foot male who weighs 210 pounds. Used to weigh 200....but have gained 10 lbs due to all of this....
Any thoughts/suggestions appreciated.
by Karen321 on Tue Aug 12, 2008 12:00 AM
My husband's TSH was still high at 15, six weeks after starting his levothyroxine following RAI. They were expecting it to be under 4. His meds were increased from 150 to 175 and he seems to be more alert and better able to stay awake past 8 PM now! So, we think the increase is working. He will have a re-check of his TSH 8 weeks after the increase which is in a couple of weeks. We hope it has gone down to where it needs to be. I have heard that regulating the TSH can be a challenge in some people but that in time, they can usually iron it out. I bet the cytomel will be a nice booster for you and maybe it won't take too long to get you where you need to be. Good luck!
Thanks for the reply. I was having a hard time finding an example of another person who had a very high TSH score after 6 weeks on Synthroid, etc...and I am going to 200 from 150...so maybe that will help. Also...I guess...technically...I was only on the 150 dose for 5 weeks not six...I spent the 1st week of the six on a 100 mcg dose of synthroid...and after some checking around I went to see my Endo and said...is 100 mcg enough? seems kind of low..so he said to try 150 mcg...for someone my size...the 150 mcg..is not much.....so maybe I am just a little behind. Also...I was around 100 tsh when I started on Synthroid.......so I had a long way to come down from...which may also take longer...not sure. I am assuming..if someone reached a TSH high of 50...and started on Synthroid..they may get to under 5 faster...than someone who started at 100 TSH..not sure how this works.
I am also taking alot of supplements and have a high fiber diet (alot of fruit and vegetables).....so perhaps they were slowing down my absorption..not sure...but I am going to cut back on other supplements for a few weeks and see if that helps.
Has anyone else had a TSH level which stayed stubbornly high? Just curious....doctors do not seem to have much of an explanation on why I may have poor absorption, etc...
I guess the good news is that my thryoglubin score is at a 1.0....so it is heading to 0..basically 6 weeks after RAI....so that seems on track to going to the right number! I could tell my TSH was high based on the way I feel...I knew before I got the blood test..things were not right!
by Karen321 on Thu Aug 14, 2008 12:00 AM
I just had a question. You mentioned your TG was 1.0 six weeks after RAI. (congratulations, by the way). Do you mind my asking what your TG was before RAI but after your thyroidectomy? My husband's was 13. something before RAI and was 1.6 two months later. (along with the TSH of 15). I am very curious about people's TG count. It's interesting to see how the level bottoms out for some right away and for others it takes a while but then it does lower. (hopefully) Anyway, if you don't mind sharing, I would appreciate it. Thanks and take care.
by tracyonmaui on Fri Aug 15, 2008 12:00 AM
It's been one year for me on synthroid. (July 30,2007 was my surg). In the past year my docs have uped my dose 5 times. I did a TSH on Monday and it's FINALLY at 0.16 and my TG is at 0.3. It took FOREVER!! Hang in there you just need to find the correct dose for you. Everyone's different. In the meantime you will find yourself with a useless collection on synthroid. My bummer is that i'm scheduled to do another scan soon so I need to stop my meds and start my wonderful diet. I'm hoping that I wont have such a hard time again getting my THS back down. I do have the choice to do thyrogine shots but I did that the last time and I don't want to do it again. As crazy as that is i'm choosing to go hypo. Good luck to you. I know that the wait is hard but it will be ok.
by denmurpar on Sun Aug 17, 2008 12:00 AM
On 8/14/2008 Karen321 wrote:Hi again I just had a question. You mentioned your TG was 1.0 six weeks after RAI. (congratulations, by the way). Do you mind my asking what your TG was before RAI but after your thyroidectomy? My husband's was 13. something before RAI and was 1.6 two months later. (along with the TSH of 15). I am very curious about people's TG count. It's interesting to see how the level bottoms out for some right away and for others it takes a while but then it does lower. (hopefully) Anyway, if you don't mind sharing, I would appreciate it. Thanks and take care. Karen
Just wanted to answer your question. My daugther had a 29 TG full hypo three days pre ablation/ra131 and 9 weeks post surgery.
At 6 weeks post ablation, on levoxyl she had a .4 tg and a .76 tsh. increased her dose and she went to a .01 tsh (very low) and still at .4 tg at 5 months.
She has another tsh test in september ish. She is quite surpressed but she feels good and her heart rate is unver 60 beats per minute (over 80 not so good) and doesnt seem to have other hyper symptoms so doc is ok with her tsh for now.
I think once we get her unsurpressed tg undetectible, then we can slowly bring up her tsh slightly as not to comprimise her bone health or heart valves which can be comprised long term with a too low tsh. It should be under .1 with her risk category (which we talked about before) but .01 is very low.
Hope this helps. I've always been curious what others tg was after surgery at full hypo pre ablation. My daugther's seemed so high.
thanks and all my best to your husband and you!: ) DP
by Karen321 on Mon Aug 18, 2008 12:00 AM
Thanks so much for the info. I will be watching here to see how people who did RAI around the same time are faring. It's such a waiting game, isn't it? I guess we have to get used to that! Take care and best wishes for your daughter as well!
by mom23boysNJ on Wed Sep 03, 2008 12:00 AM
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
We care about your feedback. Let us know how we can improve your CancerCompass experience.