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I went to the Endro for the first time today... this is what he said ...
Thank you for putting up with all of my questions these last couple of weeks. I saw the Endro. doc today. It is said he is the best in the area. He asked lots of questions, reviewed my test results, and examined me. He stated that I had Hyperthyroidism - nothing more, nothing less. There are no goiters or nodules. He advised that I have the Radio Active Iodine treatment. If I were to be treated with oral meds, the situation would be there whenever/if I stopped. Left as is or untreated, it would only continue to get worst. What is the experience of those here?
I stuggle with my weight as it is and I am apparently falling into that 1% of people who maintain or gain weight with Hyperthyroidism instead of losing. I know I will most likely become hypo after the treatment (which he stated would take up to 6 months for results) and that really concerns me, almost to depression. I'm open to suggestions for help with this.
For some reason which I do not understand, I took the news today really hard and emotionally. Its not life threatening and I know others are worst off than I am so why did it hit me so hard?
I can say that I have the best family though. They are very supportive and are trying to understand.
Thanks again! I look forward to hearing from you. Jamie
I stuggle with my weight as it is and I am apparently falling into that 1% of people who maintain or gain weight with Hyperthyroidism instead of losing. I know I will most likely become hypo after the treatment (which he stated would take up to 6 months for results) and that really concerns me, almost to depression. I'm open to suggestions for help with this.
For some reason which I do not understand, I took the news today really hard and emotionally. Its not life threatening and I know others are worst off than I am so why did it hit me so hard?
I can say that I have the best family though. They are very supportive and are trying to understand.
Thanks again! I look forward to hearing from you. Jamie
Sorry but I don't have the ranges. The info I put in parentheses were what I could remember them telling me at the time the results were given to me. Sorry this isn't more help. I will see my GP on Friday regarding my lower back. If I get no answers on tests to be performed by my Endro then I will get the GP to run them. I know, I need to go in fasting. Thanks for the help.
do you have the ranges?
i find it very odd that they didn't check antiTPO, antithyroglobulin, TSI, Free t3, and some of the others that i can't think of without looking them up :). i would demand these before proceeding.
i find it very odd that they didn't check antiTPO, antithyroglobulin, TSI, Free t3, and some of the others that i can't think of without looking them up :). i would demand these before proceeding.
OOPS! I forgot to post the tests results!
TSH - .05 (4-.4 norm?)
T3 uptake - 39
T4 - 18.2
Free T4 - 7.1
Ultrasound - thyroiditis, enflamed
Scan - right decreased more than the left (I was shown the scan. The upper left lobe was grayed. I don't remember if the entire thyroid was or not.)
4 hour uptake - 16% (4-14% norm?)
24 hours uptake - 51% (15-30% norm?)
No nodules or goiters.
I am now starting to see and feel the left size of my thyroid with my hand.
I wasn't given the averages/norms for these tests so I have nothing to compare to for normalcy.
TSH - .05 (4-.4 norm?)
T3 uptake - 39
T4 - 18.2
Free T4 - 7.1
Ultrasound - thyroiditis, enflamed
Scan - right decreased more than the left (I was shown the scan. The upper left lobe was grayed. I don't remember if the entire thyroid was or not.)
4 hour uptake - 16% (4-14% norm?)
24 hours uptake - 51% (15-30% norm?)
No nodules or goiters.
I am now starting to see and feel the left size of my thyroid with my hand.
I wasn't given the averages/norms for these tests so I have nothing to compare to for normalcy.
Hello all! Wow, at first I thought nobody would reply and now they seem to keep coming! Thanks for the support & encouragement!
I have decided to wait on ANY permanent type of treatment. I want to know what caused Mr. Thyroid to go berserk. I called the doctor yesterday to let them know this. They still want to do another uptake and scan to see what is going on. This is fine with me but should I go by that more than the blood tests or insist on both (I want to know about my antibodies as it is - regardless). They don't seem too interested in doing the blood tests so I'm waiting to hear back on whether or not they will order them. I realize the blood tests and scans work together in helping know what is going on but should one be relied on more than the other?
I will post my original tests results below. Granted these were don back in February and they are said to be no good after a month's time.
I plan to call my general practicioner today about another issue. I'm having trouble with my lowest part of my back and hips. Some mornings they don't seem connected and there is numbness. It comes and goes. Could this be related to the thyroid at all? Anyway, if the Endro's office won't work with me on the blood tests, then I will go through this office.
Man! I'm only 42! I shouldn't be falling apart so soon! LOL!
I have decided to wait on ANY permanent type of treatment. I want to know what caused Mr. Thyroid to go berserk. I called the doctor yesterday to let them know this. They still want to do another uptake and scan to see what is going on. This is fine with me but should I go by that more than the blood tests or insist on both (I want to know about my antibodies as it is - regardless). They don't seem too interested in doing the blood tests so I'm waiting to hear back on whether or not they will order them. I realize the blood tests and scans work together in helping know what is going on but should one be relied on more than the other?
I will post my original tests results below. Granted these were don back in February and they are said to be no good after a month's time.
I plan to call my general practicioner today about another issue. I'm having trouble with my lowest part of my back and hips. Some mornings they don't seem connected and there is numbness. It comes and goes. Could this be related to the thyroid at all? Anyway, if the Endro's office won't work with me on the blood tests, then I will go through this office.
Man! I'm only 42! I shouldn't be falling apart so soon! LOL!
Can I just clarify something here.....
As I said before , take your time, go on antithyroid meds and research everything.
But just because you have RAI or Thyroidectomy, it doesnt mean you STAY hypo.
You go hypo after a certain amount of time and if you know your symptoms and body well, you can avoid crashing too hard.
With RAI, most Endo's wait until your tsh is at least 10.0 before prescribing a T4 med just to make sure the thyroid is no longer working.
But if you do know your body and symptoms well, you can avoid this dilemma and ask for T4 meds (thyroxine) earlier. I know my tsh was 6.0 when I was put on a T4 med.
But I must add...that regardless of RAI or TT, you must tweak your meds slowly and this does take time.
You dont just take T4 and bang, your back to normal.
This is something I just wanted to clarify here as a lot think that once yr thyroid is ablated that you are Hypo FOREVER.
This is not the case.
As others have said, you are on meds either way...whther its anti-thyroid meds or a thyroid replacement med but personally myself being hyperthyroid out of control, I have found it so much easier to deal with hypo than hyperhtyroidism.
mainly because mine was a severe case.
I honestly believe that you should research both sides of the fence so to speak before you make any desisions as once the thyroid is ablated or gone, there is no going back. It is permanent.
If your hyperthyroidism is not severe, perservere with the ATDS while you learn all you can about the condition.
Once again I stipulate, get the antibodies tests done.
No antibodies? Then no RAI or TT in my books:)
As I said before , take your time, go on antithyroid meds and research everything.
But just because you have RAI or Thyroidectomy, it doesnt mean you STAY hypo.
You go hypo after a certain amount of time and if you know your symptoms and body well, you can avoid crashing too hard.
With RAI, most Endo's wait until your tsh is at least 10.0 before prescribing a T4 med just to make sure the thyroid is no longer working.
But if you do know your body and symptoms well, you can avoid this dilemma and ask for T4 meds (thyroxine) earlier. I know my tsh was 6.0 when I was put on a T4 med.
But I must add...that regardless of RAI or TT, you must tweak your meds slowly and this does take time.
You dont just take T4 and bang, your back to normal.
This is something I just wanted to clarify here as a lot think that once yr thyroid is ablated that you are Hypo FOREVER.
This is not the case.
As others have said, you are on meds either way...whther its anti-thyroid meds or a thyroid replacement med but personally myself being hyperthyroid out of control, I have found it so much easier to deal with hypo than hyperhtyroidism.
mainly because mine was a severe case.
I honestly believe that you should research both sides of the fence so to speak before you make any desisions as once the thyroid is ablated or gone, there is no going back. It is permanent.
If your hyperthyroidism is not severe, perservere with the ATDS while you learn all you can about the condition.
Once again I stipulate, get the antibodies tests done.
No antibodies? Then no RAI or TT in my books:)
I so totally agree with everything stated above! On this I feel very strong, I'm not as
educated as most people here, but this is my own opinion. Not long after my total
thyroidectomy for thyroid cancer, obviously necessary, a coworker was diagnosed
with grave's. I gave her my own advice based on what being hypo does to me. I thought she should at least take the anti-thyroid medications for a little while, see how that worked. She had been given the choice for RAI, or the medication. She opted for the RAI because she didn't want to be on medicine for the rest of her life. Obviously, I pointed out she would STILL have to be on medicine. 6 months later, she was calling me saying she wished she had listened to me. Just remember, either way, you will have to take medication for the rest of your life, depending on your choice. Ablating the thyroid means thyroid hormone supplements every day, or not ablating means anti-thyroid medication every day. Just make sure you are positive and at peace with your decision. Best of luck!!! I know this is a hard one !!
educated as most people here, but this is my own opinion. Not long after my total
thyroidectomy for thyroid cancer, obviously necessary, a coworker was diagnosed
with grave's. I gave her my own advice based on what being hypo does to me. I thought she should at least take the anti-thyroid medications for a little while, see how that worked. She had been given the choice for RAI, or the medication. She opted for the RAI because she didn't want to be on medicine for the rest of her life. Obviously, I pointed out she would STILL have to be on medicine. 6 months later, she was calling me saying she wished she had listened to me. Just remember, either way, you will have to take medication for the rest of your life, depending on your choice. Ablating the thyroid means thyroid hormone supplements every day, or not ablating means anti-thyroid medication every day. Just make sure you are positive and at peace with your decision. Best of luck!!! I know this is a hard one !!
what tests did you have so far? i thought that you already had an uptake scan that showed a bright area in the upper left pole? you also had increased uptake, right?
what blood tests did you have?
i really think you need more information before you proceed. i am hypothyroid and in my own misery, but i'm glad that i still have my thyroid (meaning i didn't have ablation...there's always a chance of recovery). plus, if you have rai, you're going to be hypothyroid. having your own thyroid and thyroid hormones is much better than having synthetic hormone. if i was in your shoes, i'd definitely try suppression meds for awhile. see how your body responds.
what blood tests did you have?
i really think you need more information before you proceed. i am hypothyroid and in my own misery, but i'm glad that i still have my thyroid (meaning i didn't have ablation...there's always a chance of recovery). plus, if you have rai, you're going to be hypothyroid. having your own thyroid and thyroid hormones is much better than having synthetic hormone. if i was in your shoes, i'd definitely try suppression meds for awhile. see how your body responds.
Blood test for TSI and T3; 85% patients younger then 60 y.o.with Grave's disease have elevated TSI [even with nomal blood tests];
Stop and take a minute to smell the roses :)
I agree with the above postings.
RAI is permanent just as Thyroidectomy is and its like having a heart transplant when one is needed.
Ask questions.
Demand answers.
Dont be fobbed off.
By the way, I am one of the lucky ones who had RAI and come good but one of the unlucky ones to have Graves Disease.
Be 100% sure on yr desision.
After all..its your body and you should know exactly whats going on with it.
Take yr time (unless severe hyperthyroidism) and ask, ask and ask over again...questions.
Let us know how you go :)
I agree with the above postings.
RAI is permanent just as Thyroidectomy is and its like having a heart transplant when one is needed.
Ask questions.
Demand answers.
Dont be fobbed off.
By the way, I am one of the lucky ones who had RAI and come good but one of the unlucky ones to have Graves Disease.
Be 100% sure on yr desision.
After all..its your body and you should know exactly whats going on with it.
Take yr time (unless severe hyperthyroidism) and ask, ask and ask over again...questions.
Let us know how you go :)
So, I should have both the blood work and the RAI Scan? Or the scan then the blood work depending on its results? Its been a long day. Forgive me if I've mixed things up.
I'm wondering if I've read to much. Am I getting things confused? Ahhhhhhg!
I'm wondering if I've read to much. Am I getting things confused? Ahhhhhhg!
Definately.
You should consider getting those labs done too.
Being someone that had the RAI and only being on anti thyroid meds for a very short time, I wish my endo - at that time- would have worked with me a little longer prior to getting ablated. :(
898 is very technical in his advice. I totally admire his point of view.
BTW - 898 - We've missed you on board lately :)
You should consider getting those labs done too.
Being someone that had the RAI and only being on anti thyroid meds for a very short time, I wish my endo - at that time- would have worked with me a little longer prior to getting ablated. :(
898 is very technical in his advice. I totally admire his point of view.
BTW - 898 - We've missed you on board lately :)
When I spoke with the nurser earlier today, she did say that they could do the scan and wait before doing treatment. Would the blood work need to be done as well as the scan to get an accurate picture of what is going on?
Prior to proceeding you should have RAI scan; if you are going to demonstrate low uptake [about 8%] in 24 hours, then you have thyroid inflammation and NO RAI is necessary.If RAI uptake is 45% and higher, the T3 is elevated, the thyroid has increased blood flow and TSI are elevated you have Grave's disease.
I agree! There is another post relating to this - "Should I have RAI treatment?"
http://www.medhelp.org/posts/Thyroid-Disorders/Should-I-have-RAI-treatment/show/946294
The only thing I have decided at this point is that I want more information and testing before I do anything! I've stopped all meds (was only on blood pressure & stomach meds) and for the most part feel fine. The heat is still wearing me down and I'm not resting well or for long periods of time. I just can't get my mind off of this. I want to know.
Thanks for asking!
http://www.medhelp.org/posts/Thyroid-Disorders/Should-I-have-RAI-treatment/show/946294
The only thing I have decided at this point is that I want more information and testing before I do anything! I've stopped all meds (was only on blood pressure & stomach meds) and for the most part feel fine. The heat is still wearing me down and I'm not resting well or for long periods of time. I just can't get my mind off of this. I want to know.
Thanks for asking!
it's interesting that your doctor didn't give you an underlying reason for hyperthyroidism. is it graves? did you have elevated tsi? antibodies?
have you decided about treatment options?
have you decided about treatment options?
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