Good news today. Dr Heller did his usual digging and prodding of my neck and lymph node area and said that everything felt fine. I asked him afterwards if he still felt the calcification that was found last year. He dug around again and said that while he can still feel it, he does not think that it is anything at all to worry about.
Regarding next steps, he was of the notion that I did not need another scan. The fact that I had another clean scan last October 2010 and that he doesn't feel anything abnormal, another scan was not necessary. When I asked whether that meant this year only, for the next couple years or ever, he said that he doesn't see the need for me to have to ever get one again, unless there is something abnormal that comes up on the ultrasound, which he thinks is the most important test. He is not a big fan of the scan and does not feel that they are sensitive enough. He knows that you can't be completely confident given the presence of the antibodies, but he recommends just the ultrasound and blood tests every year without the need for a scan. Now, hopefully Dr Fenichel will agree. I know that she just wants to be cautious with me, but I can't take going through the pre and post scan process every year of my life. Hopefully, at the least she will give me a year off and just go with the ultrasound and blood test. We will see next week.
Instead of going to the lab, Dr Heller's staff took my blood and they will send it to Dr. Fenichel, which I will be seeing on 4/21.
My next appointment with Dr. Heller is on 10/13/11 at 5:15PM.
Thursday, April 14, 2011
Thyrogen and Scan - Week Starting on 10/25/10
The end result was very good news - the scans were clear again. However, the weeks leading up to the scans were frustrating as usual. Maybe even worse than last year, which I thought wasn't possible. The low iodine wasn't as bad this time around, but there were problems securing Thyrogen, shipping problems, scheduling issues...
Once again, it was another big ordeal securing the Thyrogen, but this time the culprits were the staff at Dr F's office and not NYU. It started after seeing Dr. M while Dr F was on maternity leave. She told me she would take care of scheduling my scans - she did not...strike one. Then she told me that I could get Thyrogen from Dr Heller and not have to go through the process of ordering Thyrogen. What a relief! However, it wasn't true. When I spoke with Dr Heller at my appt on 10/14, he said that while he had Thyrogen in his office, he was not at liberty to give it to me - strike two. Therefore, I had to rely on the staff to order Thyrogen for me...strike three.
As usual, no one knew the proper way to go about getting me Thyrogen - how to talk to my insurance company, which specialty pharmacy to speak with, making sure it was shipped on time, etc. As expected, I was told that my insurance company did not cover the drug and that it was up to me as to how I wanted to proceed. I couldn't believe it, everything that I anticipated was starting up all over again. At least I was much better prepared this time around. Since my insurance company did not change from the previous year, I knew that I was 100% covered (or at least mostly) no matter what anyone said. I knew which specialty pharmacy to speak with (or so I thought...). I took matters into my own hands and started making calls almost every day - Dr F's staff was useless.
I thought I had a leg up going this time around since I already knew which specialty company to speak with, Precision Rx Specialty Solutions (who was used in 2009). To my dismay, the company was no longer around but it seemed to be bought/changed to Curascript. Therefore, I assumed that they were the company to deal with now. I made phone calls to them, as did Dr F's staff. In the beginning, things seemed to be going well. We had weeks to go until my scans and the process was pretty smooth so far. Curascript had my paperwork and said that I was covered. However, that was short lived. Curascript later told me/Dr F staff that I was not covered. After several phone calls, I found out that Curascript was not the correct company to be dealing with which is why my insurance company was not approving me. We were dealing with the wrong company for almost a week now and cost me precious days as my scan was approaching. Evidently, starting 3 weeks in advance was not enough. How is it that no one knew to tell me that Curascript was not the right company!
I did not realize that the specialty pharmacy changes from year to year - lesson learned! I knew from last year to call Thyrogen (Genzyme) directly and find out from them who was the specialty pharmacy for my insurance company. I found out that it was BioScrip. Things seemed to be looking up. I spoke with someone from BioScrip and found out that they were the correct company and that they even had paperwork for me from a weeks before and confirmed that I was 100% covered (why no one called me is preposterous!). Now, the only obstacle was getting the shot shipped to NYU in time. Who would have thought that this part would cause the biggest problem. Dr. F's office incorrectly told me that it takes about 2 weeks to get Thyrogen shipped - I was used to this already. BioScrip told me that they could FedEx the package and it would only take two days. That was a relief. It was cutting it close though. I was speaking to them on the Tues or Weds before my scan the next Monday, and the package need to arrive by Friday since there was no one to pick up the package over the weekend at NYU. I called to confirm on Thursday that the package was on schedule and I was told that everything was looking good. I, however, wouldn't feel comfortable until it was sitting in NYU hospital. Now, it was already 3PM on Friday and the package hadn't arrived yet. I then got a phone call from BioScrip (as I was getting my pre scan blood test), and they told that there was a problem with the shipment and it wouldn't get there until Tuesday the next week. Since the scan process could only start on a Monday (or so I thought), I was afraid that I would have to wait another week until the process could start and another week on the diet. I lost it. I called up BioScrip and yelled until I got someone to tell me that they spoke with someone at NYU who said that they would be there on Saturday to pick up the package. What a relief. However, when I got to NYU on Monday to take my first Thyrogen shot, I was told that it never arrived. I had a feeling that would happen. Once again, I spent the morning making phone calls to see what happened. After about an hour and a half, I found out that the package was indeed delivered by no one knew where in the hospital it went. I couldn't take it anymore. Luckily, the hospital was able to use one they had in the department and then they would just replace it when they eventually found the package.
Notes to remember:
Once again, it was another big ordeal securing the Thyrogen, but this time the culprits were the staff at Dr F's office and not NYU. It started after seeing Dr. M while Dr F was on maternity leave. She told me she would take care of scheduling my scans - she did not...strike one. Then she told me that I could get Thyrogen from Dr Heller and not have to go through the process of ordering Thyrogen. What a relief! However, it wasn't true. When I spoke with Dr Heller at my appt on 10/14, he said that while he had Thyrogen in his office, he was not at liberty to give it to me - strike two. Therefore, I had to rely on the staff to order Thyrogen for me...strike three.
As usual, no one knew the proper way to go about getting me Thyrogen - how to talk to my insurance company, which specialty pharmacy to speak with, making sure it was shipped on time, etc. As expected, I was told that my insurance company did not cover the drug and that it was up to me as to how I wanted to proceed. I couldn't believe it, everything that I anticipated was starting up all over again. At least I was much better prepared this time around. Since my insurance company did not change from the previous year, I knew that I was 100% covered (or at least mostly) no matter what anyone said. I knew which specialty pharmacy to speak with (or so I thought...). I took matters into my own hands and started making calls almost every day - Dr F's staff was useless.
I thought I had a leg up going this time around since I already knew which specialty company to speak with, Precision Rx Specialty Solutions (who was used in 2009). To my dismay, the company was no longer around but it seemed to be bought/changed to Curascript. Therefore, I assumed that they were the company to deal with now. I made phone calls to them, as did Dr F's staff. In the beginning, things seemed to be going well. We had weeks to go until my scans and the process was pretty smooth so far. Curascript had my paperwork and said that I was covered. However, that was short lived. Curascript later told me/Dr F staff that I was not covered. After several phone calls, I found out that Curascript was not the correct company to be dealing with which is why my insurance company was not approving me. We were dealing with the wrong company for almost a week now and cost me precious days as my scan was approaching. Evidently, starting 3 weeks in advance was not enough. How is it that no one knew to tell me that Curascript was not the right company!
I did not realize that the specialty pharmacy changes from year to year - lesson learned! I knew from last year to call Thyrogen (Genzyme) directly and find out from them who was the specialty pharmacy for my insurance company. I found out that it was BioScrip. Things seemed to be looking up. I spoke with someone from BioScrip and found out that they were the correct company and that they even had paperwork for me from a weeks before and confirmed that I was 100% covered (why no one called me is preposterous!). Now, the only obstacle was getting the shot shipped to NYU in time. Who would have thought that this part would cause the biggest problem. Dr. F's office incorrectly told me that it takes about 2 weeks to get Thyrogen shipped - I was used to this already. BioScrip told me that they could FedEx the package and it would only take two days. That was a relief. It was cutting it close though. I was speaking to them on the Tues or Weds before my scan the next Monday, and the package need to arrive by Friday since there was no one to pick up the package over the weekend at NYU. I called to confirm on Thursday that the package was on schedule and I was told that everything was looking good. I, however, wouldn't feel comfortable until it was sitting in NYU hospital. Now, it was already 3PM on Friday and the package hadn't arrived yet. I then got a phone call from BioScrip (as I was getting my pre scan blood test), and they told that there was a problem with the shipment and it wouldn't get there until Tuesday the next week. Since the scan process could only start on a Monday (or so I thought), I was afraid that I would have to wait another week until the process could start and another week on the diet. I lost it. I called up BioScrip and yelled until I got someone to tell me that they spoke with someone at NYU who said that they would be there on Saturday to pick up the package. What a relief. However, when I got to NYU on Monday to take my first Thyrogen shot, I was told that it never arrived. I had a feeling that would happen. Once again, I spent the morning making phone calls to see what happened. After about an hour and a half, I found out that the package was indeed delivered by no one knew where in the hospital it went. I couldn't take it anymore. Luckily, the hospital was able to use one they had in the department and then they would just replace it when they eventually found the package.
Notes to remember:
- Specialty pharmacy in 2009 - Precision Rx Solutions
- Specialty pharmacy in 2010 - BioScrip
- Call Thyrogen (Genzyme) as a first step to check who the specialty pharmacy that supplies the shot for United Healthcare PPO
- Call United Healthcare beforehand to see what is covered and what isn't
- NYU scans are a five day process, usually six days: Get blood test before scan, Day 1: Thyrogen, Day 2: Thyrogen, Day 3: Get blood test then administer RAI pill (4 hours total time), Day 4: head & neck scan (45 minutes) and then take Fleet Kit , Day 5: total body scan (2.5 hours) and then a final blood test, and then probably another total body scan
- In the past, you had to schedule the scan process to start on a Monday only. However, I was told in 2010, after I made my appointment, that you can schedule to start either on a Monday, Tuesday or Thursday.
- Ask if I can get the scan at Lennox Hill, as many other Dr. F patients do, since they have Thyrogen on hand and does not need to be ordered. At least that was the case in 2010.
Visit with Dr. Heller - 10/14/10 - 3 Month Calcification Follow Up
After seeing Dr Heller in July 2010 (in which he took his own ultrasound) regarding the calcification that was found during my ultrasound on July 2nd, he wanted me to come back in October for a follow up to see if anything changed.
He took another ultrasound in his office of the calcification and saw that it had gotten slightly smaller - going from 0.88 cm in July to only .64 cm in October. He was not concerned with nodules or calcifications as small as the one that I had. He doesn't think that I will have further problems with it, but he will continue to check it out. He doesn't recommend taking any surgical action with small calcifications. About 30-40 years ago, these things caused doctors to take out all of the lymph notes. Now, many doctors just leave them in and nothing usually happens in anywhere from 40-60% of patients. Due to the small size of the calcification, Dr Heller did not seem too concerned.
When I asked him if I would need a scan every year even if the antibodies don't go away, he said no. He felt that checkups, ultrasounds and blood tests would be fine. As we already know, the best thing to do would be to have a Thyrogen stimulated blood test, but that is not reliable for me due to the presence of the antibodies. He does not feel that the scans add much.
When I asked him about what would happen if the calcification lit up on the scan (indicating that it was thyroid tissue), he said that if anything would be done at all, it would be surgery and not RAI since I already got a pretty big dose a couple years earlier.
He took another ultrasound in his office of the calcification and saw that it had gotten slightly smaller - going from 0.88 cm in July to only .64 cm in October. He was not concerned with nodules or calcifications as small as the one that I had. He doesn't think that I will have further problems with it, but he will continue to check it out. He doesn't recommend taking any surgical action with small calcifications. About 30-40 years ago, these things caused doctors to take out all of the lymph notes. Now, many doctors just leave them in and nothing usually happens in anywhere from 40-60% of patients. Due to the small size of the calcification, Dr Heller did not seem too concerned.
When I asked him if I would need a scan every year even if the antibodies don't go away, he said no. He felt that checkups, ultrasounds and blood tests would be fine. As we already know, the best thing to do would be to have a Thyrogen stimulated blood test, but that is not reliable for me due to the presence of the antibodies. He does not feel that the scans add much.
When I asked him about what would happen if the calcification lit up on the scan (indicating that it was thyroid tissue), he said that if anything would be done at all, it would be surgery and not RAI since I already got a pretty big dose a couple years earlier.
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