My most recent labs, PET & CT

[Goingtogetbetter]

Hi all,

I am a 35 yr old femals who as of yet is undiagnosed, though obviously extremely Hyperthyroid with a "mediastinal mass with greater FDG uptake than mediastinum worrisome for malignancy"

I posted a long drawn out explanation in the general board...im really new to all this, glad I found this forum.

They have not done the Uptake test because they gave me a CT scan about 5 weeks ago and said I have to wait 2 months. What exactly will the Uptake test tell them that my labs haven't? The doctor (that i really don't like b/c he wont answer my questions...i am going to a new one next week) just keeps hollering at me telling me to take the medication (Tapazol) I can't tell if I'm in THAT much danger for waiting a week or if he's just a know it all.

T4 free 3.6 Norm: .8-1.8 (down from 7.8 5 weeks ago, is that good or bad?)
T4 thyrocine 19.1 Norm: 4.5-12.5
TSH 3rd GEN <.01 Norm: .4-4.50
Thyroid Peroxidase 1012 Norm 230-420
Antibodies 76 Norm: <35

The CT showed no nodes in the thyroid, but the lymph nodes in my neck are swollen and if you read my other post, my surgeon 1st told me it was nothing and when i called to ask about the one in my chest it was like he had forgotten it was there and said oh right we should probably biopsy. I would feel so much better if I had a doctor I trusted. So far the oncologist is the only one I really liked, but no one knows if lymphoma is a real possibility as the PET scan suggested.

i am scared, frustrated, my throat hurts and is hot, and im tired of feeling badly with brain functioning at about 40%.

Thoughts anyone?

[Andros]

Hi all,

I am a 35 yr old femals who as of yet is undiagnosed, though obviously extremely Hyperthyroid with a "mediastinal mass with greater FDG uptake than mediastinum worrisome for malignancy"

I posted a long drawn out explanation in the general board...im really new to all this, glad I found this forum.

They have not done the Uptake test because they gave me a CT scan about 5 weeks ago and said I have to wait 2 months. What exactly will the Uptake test tell them that my labs haven't? The doctor (that i really don't like b/c he wont answer my questions...i am going to a new one next week) just keeps hollering at me telling me to take the medication (Tapazol) I can't tell if I'm in THAT much danger for waiting a week or if he's just a know it all.

T4 free 3.6 Norm: .8-1.8 (down from 7.8 5 weeks ago, is that good or bad?)
T4 thyrocine 19.1 Norm: 4.5-12.5
TSH 3rd GEN <.01 Norm: .4-4.50
Thyroid Peroxidase 1012 Norm 230-420
Antibodies 76 Norm: <35

The CT showed no nodes in the thyroid, but the lymph nodes in my neck are swollen and if you read my other post, my surgeon 1st told me it was nothing and when i called to ask about the one in my chest it was like he had forgotten it was there and said oh right we should probably biopsy. I would feel so much better if I had a doctor I trusted. So far the oncologist is the only one I really liked, but no one knows if lymphoma is a real possibility as the PET scan suggested.

i am scared, frustrated, my throat hurts and is hot, and im tired of feeling badly with brain functioning at about 40%.

Thoughts anyone?

As you know, I replied to your main post. But, I wanted to say that it would be wise to call the office of the new endo and ask if you should take the med or not. The new endo may want to take some unadulterated tests. But, you should ask because we would not want to endanger you in any way.

[nasdaqphil]

How fast is your resting heart rate?

I think the doctor that prescribed the meds probably knows your heart rate and pressure and if he's that insistant on you taking your meds, he may have cause for his concern.

With your numbers as they are, I imagine your heart is beating pretty fast, even at rest.

Whatever you choose to do, I would not wait too long to seek the appropriate treatment. Your numbers are pretty high honestly. Certainly some of the higher numbers I've seen over my years on the boards. Just because the numbers are high does not mean you are in any sort of life threatening situation however, but it is cause for concern and you should seek reliable help as soon as possible.

You may feel fairly well but you also may have gotten used to your pulse ripping at a potentially dangerously high level, among other problems you may not even be aware of, like kidney trouble. It's common for people to be hyper for so long they don't think anything's wrong until after they seek treatment and realize how much more normal they feel.

[Goingtogetbetter]

Thank you Andros, yes I found your post this morning...

Phil, my heart rate is between 83-90 resting, thoughts?

Its gotten much better was easily 110 + before and the tachycardia has stopped I'm able to take a full breath now and not get winded just from standing up!! Im able to tolerate moderate exercise without the rate getting unusually high.

Thank you for your time,

[Andros]

Thank you Andros, yes I found your post this morning...

Phil, my heart rate is between 83-90 resting, thoughts?

Its gotten much better was easily 110 + before and the tachycardia has stopped I'm able to take a full breath now and not get winded just from standing up!! Im able to tolerate moderate exercise without the rate getting unusually high.

Thank you for your time,

Wondering how you are doing? It's been a while since we have last heard from you.

I hope and pray everything is alright.

[Goingtogetbetter]

Hi Andros!

I totally forgot to check in here, basically stuck my head in the sand this past month...
Here's the scoop, any thoughts will be appriciated!

My T3 has improved by 12%, T4 Total by 21% and Free T4 by 31% all without medication. But my TSH 3rd Gen has remained unchanged at .01 and my Thyroid Peroxidase went up 25% too 100 when normal is <35

I went to a new endo yesterday. I still havent had an Uptake Scan yet. He said, " well your best option is just to take the RAI and then if you have to take Hypo medicine the rest of your life no big deal." But the people I know who did RAI and suffer with the altering of the meds sometimes really struggle.

He said another option is to go on Propherol? Spelling? or tapazole. My firned said she suggested the propherol tkaen 4 times a day because it wont wipe me out as much in the morning.

Also, i have gained back all ofthe weight I lost plus a pound or 2.

In other words my body is definitely shifting! I don't want to do RAI as a first option. But am once again confused. Got blood drawn yesterday and should have back by tomorrow or Monday. He thought it possible that all the stress and trauma and the dental infections Ihad 6 months ago were definitely "contributors" but wouldnt say they could be the cause. Which I guess i don't know if they were but the timing was very convenient.

Thank you so much for checking in on me. I don't get notifications saying anyone posted, is there a way to do that?

i hope this finds you well, going to go read some of the recent posts around the board. Oh he said he is 99% sure of a Graves' diagnosis.

BE WELL!

Biji

[Andros]

Hi Andros!

I totally forgot to check in here, basically stuck my head in the sand this past month...
Here's the scoop, any thoughts will be appriciated!

My T3 has improved by 12%, T4 Total by 21% and Free T4 by 31% all without medication. But my TSH 3rd Gen has remained unchanged at .01 and my Thyroid Peroxidase went up 25% too 100 when normal is <35

I went to a new endo yesterday. I still havent had an Uptake Scan yet. He said, " well your best option is just to take the RAI and then if you have to take Hypo medicine the rest of your life no big deal." But the people I know who did RAI and suffer with the altering of the meds sometimes really struggle.

He said another option is to go on Propherol? Spelling? or tapazole. My firned said she suggested the propherol tkaen 4 times a day because it wont wipe me out as much in the morning.

Also, i have gained back all ofthe weight I lost plus a pound or 2.

In other words my body is definitely shifting! I don't want to do RAI as a first option. But am once again confused. Got blood drawn yesterday and should have back by tomorrow or Monday. He thought it possible that all the stress and trauma and the dental infections Ihad 6 months ago were definitely "contributors" but wouldnt say they could be the cause. Which I guess i don't know if they were but the timing was very convenient.

Thank you so much for checking in on me. I don't get notifications saying anyone posted, is there a way to do that?

i hope this finds you well, going to go read some of the recent posts around the board. Oh he said he is 99% sure of a Graves' diagnosis.

BE WELL!

Biji

Hi, Biji.............good to hear from you. Go into FAQ upper left corner and you should be able to find where you get message notifications.

Are you scheduled for the uptake scan? This is important because it could have a lot to do w/ your decision making process re your treatment options. We do want to make sure that you don't have cancer; that would be a top priority here.

If you have a good doctor, you should not have to struggle w/ thyroxine replacement.

The decision "is" yours and you have to do what you are comfortable with. That is the most important thing here. If you decide to go on anti-thyroid meds, you can always change your mind.

I will be interested in your lab results and ranges if you care to share.

[Goingtogetbetter]

Hi Andros thank you!!

OK, I just typed a whole long email and it didnt post... so here's the abbreviated version. Just got the blood tests back and even the doctor sounded confused!

T4 Free (range .8-1.8) 2.5 1 month ago 5.4 6 months ago 7.8
T3 Free (range 230-420) 745 1 month ago 1012
TSH 3rd Gen- Still .01
TSI- thyroid stim immunoglobulin- 97 Range <125 NORMAL. (this is the 1st time this was tested!!) Doctor sounded surprised when he read this.

So, all the #'s are headed in the right direction except the stubborn TSH which hasn't moved.

Any thoughts??

Also, why do they need to do a Thyroid Uptake Scan after i have just had a full body PET scan, a CT of neck and chest and ultrasound of the thyroid all which showed the thyroid was clear of any masses and of any hot spots on the PET. Im all for testing to find out what's wrong but that's a lot zapping and to do more I would just love if someone can tell me what more they can learn that would actually help?

Plus, all he said to me during the appt and just now on the phone was...take the RAI you will be cured in 6-8 weeks. Cured??? wow, I thought this was about a balancing act that I will have to do for the next lifetime...not about curing. That made me a little angry to hear since it is SO misleading. I asked about the medicine...Propherol? sp or tapazole and he said oh you can try that but you have to do it for a year and even then it might not fix it. Well, I know that but its better than killing my thyroid without trying right??

Plus, I really am feeling better, 100% over 6 months ago. Maybe not "right" yet. heartrate still a little fast, but EKG was fine and short of breath but seeing as how i was winded just from standing I can now do some swimming and very moderate exercise. Anything more makes me feel too out of breath and uncomfortable.

Also, my appetite is normal now whereas before I had to eat every hour and I've gained back all the weight I lost.

Thank you!!

[Andros]

Hi Andros thank you!!

OK, I just typed a whole long email and it didnt post... so here's the abbreviated version. Just got the blood tests back and even the doctor sounded confused!

T4 Free (range .8-1.8) 2.5 1 month ago 5.4 6 months ago 7.8
T3 Free (range 230-420) 745 1 month ago 1012
TSH 3rd Gen- Still .01
TSI- thyroid stim immunoglobulin- 97 Range <125 NORMAL. (this is the 1st time this was tested!!) Doctor sounded surprised when he read this.

So, all the #'s are headed in the right direction except the stubborn TSH which hasn't moved.

Any thoughts??

Also, why do they need to do a Thyroid Uptake Scan after i have just had a full body PET scan, a CT of neck and chest and ultrasound of the thyroid all which showed the thyroid was clear of any masses and of any hot spots on the PET. Im all for testing to find out what's wrong but that's a lot zapping and to do more I would just love if someone can tell me what more they can learn that would actually help?

Plus, all he said to me during the appt and just now on the phone was...take the RAI you will be cured in 6-8 weeks. Cured??? wow, I thought this was about a balancing act that I will have to do for the next lifetime...not about curing. That made me a little angry to hear since it is SO misleading. I asked about the medicine...Propherol? sp or tapazole and he said oh you can try that but you have to do it for a year and even then it might not fix it. Well, I know that but its better than killing my thyroid without trying right??

Plus, I really am feeling better, 100% over 6 months ago. Maybe not "right" yet. heartrate still a little fast, but EKG was fine and short of breath but seeing as how i was winded just from standing I can now do some swimming and very moderate exercise. Anything more makes me feel too out of breath and uncomfortable.

Also, my appetite is normal now whereas before I had to eat every hour and I've gained back all the weight I lost.

Thank you!!

As long as the frees are coming down. That is very very good. At this point, TSH won't be budging much because there is a lag time plus, it is really not necessary for it to budge at all provided the frees are in the right place. We keep my TSH @ 0.03 all the time and no way am I hyper.

I was not aware of the scans you already had. Everyone keeps on starting new threads and therefore previous information is lost in the threads somewhere. I do find it interesting that you are so hyperthyroid yet no irregularities were found on the thyroid? Is that what you are saying?

You are the owner of your body; therefore, you have the right to make the decision that is best for you.

Let us know if you decide to try the Tapazole.

[Goingtogetbetter]

Good morning!
Finally figured out how to subscribe to the the threads :)

Yes, they only found the right side to be a little swollen and the ultrasound was a little "cloudy" that was six months ago. They found no other irregularities. They found a slightly active lymph node in my neck and one on my mediastinum in a challenging place.

So the question is: What do they hope to accomplish with the uptake scan that they haven't already seen? I mean, its still putting more iodine in my body right? The doctore said, oh they shouldn't have given me a CT b/c of the iodine, but then wants to do this despite all ofthe other tests? Im confused. Do you know why they would still want to do this?


Wow Andros, i didn't realize that one would be kept with such a low TSH? Im not sure I follow though...how are you technically "not hyper" though your TSH is that low?

I have been to 2 surgeons who both felt my neck, and though slightly swollen decided it was not the best thing to remove a lymph node to rule out lymphoma but better to get my thyroid under control first... then get another PET scan, then if necessary be able to administer anesthesia and go into my chest and biopsy the small mass, which they also thought could have been an infection or thymus.

All of this, the symptoms of extreme hyper, the swelling in my glands etc...were preceeded by the following: 2 severe dental infections (allergic reaction to the temporary crwon material, blisters all down my throat and extreme pain and then separately 2 week sickness with fever and lost my voice.

I have read where hyperthyroid oftern follows viral infection, have you heard this as well?


Have a beautiful day to all who are reading this!!

[Andros]

Good morning!
Finally figured out how to subscribe to the the threads :)

Yes, they only found the right side to be a little swollen and the ultrasound was a little "cloudy" that was six months ago. They found no other irregularities. They found a slightly active lymph node in my neck and one on my mediastinum in a challenging place.

So the question is: What do they hope to accomplish with the uptake scan that they haven't already seen? I mean, its still putting more iodine in my body right? The doctore said, oh they shouldn't have given me a CT b/c of the iodine, but then wants to do this despite all ofthe other tests? Im confused. Do you know why they would still want to do this?


Wow Andros, i didn't realize that one would be kept with such a low TSH? Im not sure I follow though...how are you technically "not hyper" though your TSH is that low?

I have been to 2 surgeons who both felt my neck, and though slightly swollen decided it was not the best thing to remove a lymph node to rule out lymphoma but better to get my thyroid under control first... then get another PET scan, then if necessary be able to administer anesthesia and go into my chest and biopsy the small mass, which they also thought could have been an infection or thymus.

All of this, the symptoms of extreme hyper, the swelling in my glands etc...were preceeded by the following: 2 severe dental infections (allergic reaction to the temporary crwon material, blisters all down my throat and extreme pain and then separately 2 week sickness with fever and lost my voice.

I have read where hyperthyroid oftern follows viral infection, have you heard this as well?


Have a beautiful day to all who are reading this!!

When it is all said and done, sometimes the old timey stuff works better. There is nothing like a radioactive uptake scan to prove that out. It shows many things with clarity that an ulta-sound or CT is unable to do. So.........that may be why. And truth be told, I agree with that and I also agree that they should not have done the other tests (is money an object of desire here?) and should have just done the uptake.

The uptake will definitely rule in or rule out cancer and the rate of uptake is important as well.

Thanks for bringing me up to snuff on the medical; maybe we could stick to the same thread to make it easier for both of us? :anim_63:

I also agree on waiting to do anything invasive w/ the lymph nodes at this time and yes, by all means about the virus. Any traumatic event and/or serious illness certainly can and will trigger autoimmune disease that has been lying dormant.

Boy........................I hope everybody has their thinking caps on here for I cannot honestly say all your troubles are down to thyroid only. I hope that is the case and it very well could be but of course, I am a lay person, not a doctor.

Now..........to your question; keeping the TSH suppressed keeps the antibodies very very quiet and also all thyroid cancer patients need to have their TSH suppressed as well. As long as the Free T4 and Free T3 are mid-range or a bit higher, most of us feel perfectly fine. In fact, most of us feel wonderful.

So far, the day has been great. Cleaned 2 bathrooms this morning. That made me happy! Oh, for the simple pleasures of life!:party0006:

Hope your day is going great also and that you feel better.

[Goingtogetbetter]

Hi Andros

I hope things are well with you, I read some other posts and am just amazed at how much you help other people on here, you are a real blessing to us newbies!

I wanted to check in because things are definitely changing, I thought for the better but now I am confused. Here are my most recent blood tests. (the normal range is in parenthesis) Comparing the labs from the last few months all of my numbers have been steadily improving (except TSH unchanged) and the #'s in bold are now actually within normal range. I felt so much better a fw weeks ago, the swollen glands in my neck had gone down for the past few weeks for the first time in months and I have felt well enough and really wanted to exercise for the 1st time since all this started 6 months ago.

Here's the big question: I had all of the typical symptoms in a severe degree of HYPERthyroid. Shaking, hot all the time, rapid pulse (100 sitting still), lost weight. About 6 weeks ago I noticed all of the sudden I was cold all the time, started gaining weight despite finally being able to exercise, really emotional & depressed and my pulse while it has been coming down over the past few months is now around 60 which is below normal for me.

SO: ??? Even though my labs still show hyper though improving and my TSH hasn't moved out of Super hyperthyroid range .01, how on earth am i experiencing HYPOthyroid symptoms???? Please share your thoughts with me I was so excited that things seemed to be going back to normal and now this! I'm getting married in less than 3 months, this will hopefully be a happy time not waiting for the other show to drop time!

5 weeks ago:
T3 Uptake 33 (<35)
T4 (thyroxine) total 15.6 (4.5-12.5)
Free T4 5.1 (1.4-3.8)
TSH 3rd Gen 0.01
T3 Free 2 months ago 745
Thyroid Peroxidase 67 (<35)
TSI 93 (<125)
Thyroglubulin Antibodies 16.3 (2-35)

Thanks everyone!!!!
Biji

[Andros]

Hi Andros

I hope things are well with you, I read some other posts and am just amazed at how much you help other people on here, you are a real blessing to us newbies!

I wanted to check in because things are definitely changing, I thought for the better but now I am confused. Here are my most recent blood tests. (the normal range is in parenthesis) Comparing the labs from the last few months all of my numbers have been steadily improving (except TSH unchanged) and the #'s in bold are now actually within normal range. I felt so much better a fw weeks ago, the swollen glands in my neck had gone down for the past few weeks for the first time in months and I have felt well enough and really wanted to exercise for the 1st time since all this started 6 months ago.

Here's the big question: I had all of the typical symptoms in a severe degree of HYPERthyroid. Shaking, hot all the time, rapid pulse (100 sitting still), lost weight. About 6 weeks ago I noticed all of the sudden I was cold all the time, started gaining weight despite finally being able to exercise, really emotional & depressed and my pulse while it has been coming down over the past few months is now around 60 which is below normal for me.

SO: ??? Even though my labs still show hyper though improving and my TSH hasn't moved out of Super hyperthyroid range .01, how on earth am i experiencing HYPOthyroid symptoms???? Please share your thoughts with me I was so excited that things seemed to be going back to normal and now this! I'm getting married in less than 3 months, this will hopefully be a happy time not waiting for the other show to drop time!

5 weeks ago:
T3 Uptake 33 (<35)
T4 (thyroxine) total 15.6 (4.5-12.5)
Free T4 5.1 (1.4-3.8)
TSH 3rd Gen 0.01
T3 Free 2 months ago 745
Thyroid Peroxidase 67 (<35)
TSI 93 (<125)
Thyroglubulin Antibodies 16.3 (2-35)

Thanks everyone!!!!
Biji

Biji.............so good to hear from you. This is complicated but I will try to explain. The antibodies are doing this. The TSI does in fact mean you are hyperthyroid but they "do" wax and wane while they are getting ready to move in for the kill (please don't take that literally) and because of this there is a lag time between the Frees and the TSH. The pituitary gland is very very confused at this point. Mainly because there are binding, blocking and stimulating antibodies going around in your body. It's like pressing on the gas pedal and the brake pedal at the same time.


Thank you for thanking me. I wish I were "smarter" but what I have is what you get. Ha, ha!! I am soooooooooooo happy to help everyone if I can.

I think the groom is a lucky guy; you sound like a doll.

Hugs,

[Goingtogetbetter]

Thanks Andros, so sweet of you to say!! I'll be sure to tell him that :p

Um, ok a little confused aabout "going in for the kill" what's going in?? what's being killed??

So, in other words I am still hyper but my antibodies are responding as if Im hypo because they're confused?

If I got tested today, would they show Hypo or no, this is more subtle than the numbers?

And what does that mean in your experience? I mean, all of my numbers were steadily getting better and now my symptoms change... what do you think?

[Goingtogetbetter]

I just re-read your post: my TSI is in normal range, its 93 and normal is <125 or does having a TSI register at all mean I'm Hyper or Graves?
THANKS YOU!!!!!!!!!!

[Andros]

Thanks Andros, so sweet of you to say!! I'll be sure to tell him that :p

Um, ok a little confused aabout "going in for the kill" what's going in?? what's being killed??

So, in other words I am still hyper but my antibodies are responding as if Im hypo because they're confused?

If I got tested today, would they show Hypo or no, this is more subtle than the numbers?

And what does that mean in your experience? I mean, all of my numbers were steadily getting better and now my symptoms change... what do you think?

Going in for the kill meant that somewhere along the line you will no longer flit back and forth and will remain hyperthyoid. The antibodies keep building as long as they have a thyroid to attack. If you got TSH, FT3 and FT4 today, I am sure the results would be just as confusing. You are in an altered and confusing state right now because of antibody activity. Wires are being crossed w/ incorrect messages.

Antibodies are "very" subtle. As I said, they wax and wane but each time they "rebound", they come back stronger.

[Goingtogetbetter]

HI Andros!!

Well, I have been feeling like myself again the past few days and wanted to share some good news for a change!

I found a new endo who has a terrible bedside manner, but listened and answered my questions and didnt force me to get MORE tests. Just drew some blood yesterday...and guess what?? (drumroll please)

All of my #'s Free T4, T3 Free, Uptake, Thyroglbulin, peroxidase and thyoxine are all normal! They have been slowly improving each time but this time all normal. Now... the TSH is still .01 but he said let's wait 6 weeks now that everything else is normal maybe that will start to move.

I know it could be temporary or could be transitioning into something else but just for this moment I feel like a kid who got (almost) all A's on her report card! :party0049:

Don't worry about raining on my parade, do you have any thoughts on all this?

*HUGS*
Biji