Thyrogen side effects questions

 

On 4/10/2008 thyca07 wrote:

Hi Sue,

I had a TT April 16,2007, RAI June 07 w/ "Hypo Hell" as well. I had my follow up scan last month using Thyrogen and I had NO side effects at all. I did stop taking my Synthroid during the week of Thyrogen treatment. The only concern that I have is reading at the Thryrogen website that your results my not be accurate using Thyrogen vs. going hypo. If you are like me the peace of mind is worth the hypo. Next time I think I will go hypo. and alternate each year. Good Luck with your decision!

 Kim

 

I have done tons of research on Thyrogen.  I either spoke or emailed doctors at Indiana University Medical/Cancer Hospital, Sloan Kettering, James Graham Brown Cancer Center and Genzyme (Makers of Thyrogen).  All of these top cancer centers use Thyrogen ONLY.  From what I've found, you are not taking any real risks by using Thyrogen.  If the cancer has moved outside of the neck area, then you will need to go hypo.  But if the top cancer centers in the US are all using Thyrogen, that's good enough for me.  I'll be using it in two weeks.  I am more than happy to skip hypo hell.  I have an excellent circle of doctors and I know they wouldn't let me put myself at risk.  I have a 100% concensus from my endo, surgeon, internist and oncologist.

 

Good luck!

I just completed my first thyrogen shot today and they told me that side effects were very rare like less than 2% but immediately after the shot my blood pressure dropped really low where they had to give me oxygen then I got chest tightness and my blood pressure shot up really high needed and IV after a few hours I was functioning normal again they said it was probably because I didnt eat before the shot so once I got home I ate and have not been able to keep the food in me, so hopefully none of this happens to you but for me this is awful I would rather go hypo. Best of luck to you

 

 

I had my 1st AND 2nd round of thyrogen in Feb when they found an elevation in my throgloblulin levels. My doc jumped on it and ordered a scan, since I never had one b/c my cancer was very small (1mm). But my father, sister and now 23 yr old son all have it including myself. My sisters is the worst with hurtle cells and she has had numerous surgeries for metasticies in the past 5 years. My scan showed a recurrence, surprising all of us. But the thyrogen was great. After 4 shots, 2 for the scan then  2 for the I131 treatment, aside from fatique, things went well. It's 6 months now and time for a recheck and I had my 1st shot today and the worst effect was some nausea and a little puking. Ah...I need to lose a few pounds anyway. But it always beats going hypo for 2 months! That is the worst!!!! At least this will be over in a week or so. and you get your results, one way or the other. So, I will always recommend thyrogen so long as my doc says its ok with her. Good luck and I don't think you'll need much ginger ale! 

I had my thyroid removed 10/05 due to cancer.  Last week, I had my first set of Thyrogen injections.  In the past, I had to withdraw from my medication.  I was so AFRAID of the Thyrogen that I considered withdrawing again.  However, after a panic attack in the doctor office, I did it.  The injection itself did not hurt at all.  The first day, I did not have any side effects at all. The second injection day, I had mild nausea and a mild headache.  I felt under the weather for 3 days following the second injection.  If you are facing the injections, do not worry!  It was easy and the side effects were mild and easy to deal with.  I was able to continue about my day.  Good luck!  I am praying for a clean result!

On Apr 09, 2008 12:00 AM Susan52 wrote:

I had TT in April '07 &  RAI June '07.  "Hypo Hell" was certainly true for me in terms of nausea.  About the 10 days before and at least a week after RAI, I pretty much felt like I had 24 hour morning sickness.  I'm now getting ready for my 1 year followup scan and will be doing that with Thyrogen rather than going hypo!  Yippee!  But I've also been reading the Thyrogen list of side effects---nausea, headache, etc. are listed and I'm wondering if anyone in this group has any info for me.  Is this just a standard disclaimer, or is it pretty common?  I have a really sensitive stomach to begin with and the LID over the past 2 weeks has already set it off to a certain degree. At this point I'm just trying to plan out my next week.....how much chamomille tea and seven-up am I going to need?  SUE

The shots rarely have those side effects...and here's the latest.....I'm getting my Thyrogen shots next month..and two nuclear medicine depts. in two different hospitals told me you don't really have to go on the LID diet! That the Thrygen was strong enough to spot any leftover thyroid tissue.  So...I wonder why the endocrinolgists don't all agree on this? I'm really scared NOT to go on the diet..but I'm going to call a few other hospitals and talk to the nuclear medicien depts. and see what is their protocol...and then make my decision. 

The LID isnt too bad....if you follow the cookbook online at ThyCA.org .  And also, you can add your own stuff to eat..as long as you don't eat the stuff that's listed as a no no. BUT..let's all see if we DO have to go on the LID diet as we take the Thyrogen shots.  Why put us through all that diet when we don't have to anymore? 

I have had four thryogen shots.  The first two I felt nauseau and was off for two days.  My doctor insisted that I was overreacting, but I don't have trouble with nauseau ever and so I know for a fact it was the Thyrogen.  The second time round I had no side effects. 

I have had four thryogen shots.  The first two I felt nauseau and was off for two days.  My doctor insisted that I was overreacting, but I don't have trouble with nauseau ever and so I know for a fact it was the Thyrogen.  The second time round I had no side effects. 

My doctor is using the Thyrogen for scan post TT and I do not have to be on LID.  He said I have to go Hypo and on LID for I-131 though.  I don't think I will be able to do that.  I was hypo for a week post surgically because my surgeon did not know about the Thyrogen.  It was the worst I have ever felt. 

I am getting my first Thyrogen shots next week. I had to go hypo last year after my total thyroidectomy for cancer. Thyrogen was not available at the time. I have been fighting with my insurance carrier since January to get these shots. It finally all worked out! I did not have to do the low iodine diet last year for my radioactive iodine or this year for the follow up test. My doctors feel that it is not necessary and does not affect the outcome of the test results. Good luck to everyone!

Lorrie from CT

I just had my first Thyrogen injection yesterday afternoon. I started to feel slightly Hypo last night and definitely feel it this morning. I have the second injection this afternoon.  I did not have to go on a Low Iodine Diet. My doctor and the nuclear medicine doctor both said that it does not seem to make a significant difference in the test results. Tomorrow will be the radioactive iodine pill then body scans on Friday and Monday. I will be glad when this whole thing is over (at least for this year!). I had a total thyroidectomy on 3/15/11 for papillary thyroid cancer on both sides of my thyroid. Any information or suggestions from anyone is appreciated!

Lorrie from CT