These docs sure play hardball eh? Do it our way or find another doc...I keep reading about this ultimatum, wow. Anyway, I'm glad I had the uptake scan. It helped add to the evidence that I have Graves and identified the areas where I have hot nodules additionally. Without the scan to compare against the ultrasound they cannot say which nodules are hot. This is important to know in deciding which nodules need to be biopsied and for treatment. That's my understanding of it anyway.... I know some people feel the scan is bad because it still is radiation. You could always get the ultrasound done first, see if you have any nodules, then decide on the scan.

An antibody test would show Graves or Hashimoto's and the scan would show nodules. Can you just have the scan first like Rain said? I had the uptake scan at first but I didn't know anything about this yet..now I just get scans every year from the second endo. If you have to I guess you have to to get them to treat you.

I also had the uptake scan done. My Endo was pretty determined he was going to give me RAI and I was told that it was the only definite way to determine if I had graves. As it turned out...the comments on the sheet were indecisive...lol. If I could do it over again I would have gone the route Rain mentioned. I did not have nodules just an enlarged lobe. Big Hugs...Kathy

I would just like to add...I had no choice but to get the uptake scan...it was one step in the process. My endo really was getting impatient with me.

Well I understand the uptake should have been done at the beginning over a year ago but it wasn't and so the new doc wants to start over. She told me to go off my thyroid medicine staring Monday and that is all she told me but when I looked it up on the internet it told me to a void alot of food even ice cream. If I stop my meds is it really necessary to avoid all those fods the week before cause this is the week of my delayed by 20years honeymoon. I really need my vitamin b. Not worth a crap without it. I would like to be ablebto eat a little fish one night since we will be on the coast. Uptake scan is 9:30am and at 11:30 I go and get the ultrasound then go back to uptake.

To diagnose Graves' the uptake scan is completely useless. Years ago before we had antibody tests that's all they had to use to guess with. It has a 20% error rate even when viewed by an experienced radiologist.

Yes, an uptake scan will show the difference between hot and cold nodules. BUT it only shows the FRONT view. A lovely glowing hot nodule can easily hide a cold one behind it.

BOTH hot and cold nodules can be cancer, it's just more likely that cold ones are.

Biopsies to not RULE out cancer, but do increase the guessing odds. 10% error rate. Redo in one year to increase the odds accuracy. View personal history of radiation exposure to better judge chances that there might be thyroid cancer..

As we age, most people do have nodules, and they are not cancer.

The biggest problem with the uptake scan is not the radiation, not that that's a healthy thing to add to an already stressed out body, the biggest problem is the HIGH dose of iodine. This iodine increase our Graves' antibodies, the very thing we do not want.

Many find the uptake scan does make them more hyper, due to the iodine, but the ones I feel so bad for are the ones that the iodine dose, and resulting antibody increase, causes their first TED symptoms ( or increases the existing TED).

Tough spot to be in Skippy. Patients in teaching hospitals are lab rats, there the teach to doctors to be, how stuff works...how all the various tests are done.

For various types of cancers these large hospitals are the way to gather information, doctors and patients..and where we see big breakthroughs. But for everyday diseases like Graves' teaching hospitals are not likely to be helpful.

Most patients they see are there by way of Medicaid or such, and these people have the odds against them to be able to remember to take their pills, to get labs done on time, to eat decent food and have time to lower their stress. This is an unfortunate fact of life..some people have a tough life,lower income, horrid living conditions, violence in the home or a history of violence, more children than they can afford to care for properly,undiagnosed and untreated mental health problems, possible drug or alcohol problems....it's a long list.

So the doctors-to-be and their professors get a skewed view of how we Graves' patients are, and how well or poorly we might do on ATDs. It's difficult for them to really slow down enough to see individuals, and since they will never see these masses of patients again, its all to easy to focus on a fast fix..RAI, with no regard to long term quality of life. They just have so many patients to see every X number of minutes. ...not hyper anymore and they figure they're rid of that person,

If that person comes back with TED caused by the RAI, if it happens in the first year or so, well they have a large ophthalmology department that need cases like this for their student doctors. If the TED takes it's time and takes a few years to show up, the large hospital may well be in the clear since this patient is no longer on Medicaid. Private insurance companies think this way all the time, just for financial reasons rather that the teaching aspect.

While the majority of their thyroid patients are welfare cases, they do also advertise and try to get patients in that do have money..and that's even sadder. Those people innocently assume the care at such a big, well known place must be superior.

And thus the standard of care, RAI, continues to be taught in most of these big places. Imagine if you were a doctor there.. look out in the waiting room any day, any hour..and see how many people you have to see today. If they are Graves' patients, many of these are the ones that will absolutely fail on meds.. they will be non-compliant with their ATDs or anything else prescribed, they will not get labs on time, and when they are off their meds or drinking.. their children and society deserve better. Do you want someone like that driving next to you ?

I have no idea how we as Graves' patients change this standard of care. I understand why these patients are given RAI. Can we as a society afford to provide surgery to all those patients ? Obviously a better choice, since they then have the choice of getting their act together and putting their Graves' into remission at a later date, but surgery is expensive. California Medicaid did some trials with surgery a few years back, but I've not heard how the long term success has been for these poor patients long term.

Bottom line..lab rats don't get choices in most cases.

Going off your meds will cause you to go hyper, and your antibodies will increase. How hyper..depends on a lot of things.

Personally I never had the uptake scan, and even though I could have qualified for some help, not Medicaid, I make too much, I refused to be seen in a setting like that. I increased my work hours and learned exactly what tests I needed, paid cash for everything, got my great doctor becasue I was not restricted by an insurance company. I did not waste money on useless tests, and I had to save up for the first endo visit with the good guy.. but it was worth it in the end.

We are all individuals, and my preferred treatment choices will be different than others, but I want to say it can be done.I am lucky in that my location is in my favor, as we get a better selection of up to date, progressive doctors here because we are often highly rated as a city with a life style attractive to these sorts of people. Of course my cost of living is higher too..but what ya gonna do. ;)

I substituted education for expensive tests, but never skimped when a test was needed. It's about making smart choices.

So it seems you need to make choices that work for you. Tough situation, but what ever you choose, it will be okay. You have great strength. We all saw that when you somehow made it through that horrible time when you were SO over medicated for so long. And you did it with grace. I'm proud to know you. ((( hugs)))

Kathy,

This must all sound so odd to you, not being in the states. But then Canada stopped using iodine to clean in the dairy industry long ago...lots of things are different here.

Nice to see you again. :)

Well they told me when i first went there that that they wanted to start over and I believe they did. I have talked with folks that go there and they say they recieve the best of care but I just had a bad deal here I think. At the beginning the head of the endo dept told me I was a difficult case but I think it is what we all are going thru. I'm going to slow down take my test and then go from there. I have stressed so much over this and that is not good either. I will listen to what they say after the test and then decide but one thing I know is that there willo be no sugery or RAD

Hugs Pam

There are many people out there that are hard working persons and try to make ends meet that do not have insurance-I am one of them. I have Graves Disease and had the RAI-paid for myself and was one of the ones that was not given all options. Now 3 yrs later I have been suffering from TED for the last eight months. I am a suspect for glucoma I am told and my IOP is high. I do not have the money to pay for doctors visits and continuing treatment. I go to sliding scale income clinics and it has been a roller coaster trying to find a doctor that is not stuck in the loop of just looking at TSH and not Ft3 and Ft4 and your symtpoms. I cannot work now because of my eye disease and was told I need orbital decompression surgery. I do not want surgery, but may have to at some point. My symptoms are hypo and hyper overlapping. I believe if I could get the right medication-not levothyroxin- and the correct dosage my TED would settle down, but at this point the doctors will not look at anything but the TSH. Ok, if I cannot continue to work and without insurance-I am forced to apply for Medicaid and disability. I take my meds faithfully, eat right, exercise, don't drink or do drugs. I am a law abiding citizen and responsible. I am not out for a handout I know many people that are one Medicaid that are same. I don't think that low income persons on Medicaid deserve any less treatment options than others that have insurance or money to pay for treatment. I know how the system works and yes, it is sad. I wish I had other options. As for you, Snippy, hope you do good and God Bless you.

Hugs ellymae1...if you start your own thread or question...perhaps we would be able to help you. I had acute TED so I know what that is all about. Big Hugs...Kathy