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Old 08-08-2009, 09:03 AM   #1
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Saw endo yesterday for follow up..lymph node

Hi,
I saw my endo yesterday for my follow up, and he didn't seem too concerned about the lymph node. It is on the left and 15mm, reading on here, etc. it seems it should be pursued closer. He wants a 3 month follow up and repeat US. The rad. report, which I asked for, just says "15mm, and it is above normal limits". Concerned!! Also it says, "there is still some soft tissue distributed over the trachea which has the appearance of the thyroid isthmus although this isthmus has allegedly been removed. It is approx. 3x6 mm in longitudinal cross section." What? Althought the endo, did mentioned that this report mentioned tissue that last years did not report, and he said I have some scar tissue. At the bottom of the report, in his own handwriting it says,"try to obtain thyrogen for a thyrogen scan. Likelihood of tumor is still very low. Reck US in 3-4 months.- this looks benign." How does he know? The report does not mention any characteristics of node besides size.

My DH thinks I should let it go until 3 month ckup, endo says poeople always have swollen nodes, for various reasons, he actually said, "you are fine" So, do I let it go, for 3 months OR NOT?????????
I want to call Mon. morning and ask why he had scribbled it out, but duh, the nurse will obviously say, because he changed his mind, so I don't really know what I am asking for!!!
He said TG was perfect, TSH great, see you in 3-4 months!!
Let it go, or pursue further?
Thanks {Reece} for your input!!
Lori

 
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Old 08-08-2009, 09:39 AM   #2
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Re: Saw endo yesterday for follow up..lymph node

If you feel you want it checked out further then I say by all means INSIST on having it looked at or find another dr. (I know that is hard to do most of the time). But it is your right and YOUR body and YOUR health that you are concerned with, not his!!! If something in your heart tells you different then go for it!

You will have peace of mind finding out what is going on for sure. It is YOUR health!!!! Remember that. I have found we have to sometimes insist on things or half the time these dr's really don't care about us. U have to be your own advocate! Good luck.

 
Old 08-08-2009, 04:15 PM   #3
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Re: Saw endo yesterday for follow up..lymph node

Hi Kat,
How are you doing?
You are so right!! I will think about it, and give myself a few days to figure out if I am over reacting, and I will probably call the endo office and ask for clarification of why he crossed out the thyrogen scan, and see what my next step will be. I HAVE to be able to trust the doctor at some point, and don't know if I do yet.......
Thanks for your advice!!
Lori

 
Old 08-08-2009, 06:42 PM   #4
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Re: Saw endo yesterday for follow up..lymph node

Hmmm....I think I would consider giving it the three months (as long as you are comfortable with this dr. and it won't get you crazy), go back for the follow up---if it's still enlarged or got bigger, I would get a needle biopsy of the lymph node, and then if I felt uncomfortable, I would get another opinion. If it was making me totally crazy, I'd go for a second opinion now.

You could also just call the doctor's office---leave a message for him to call back, and tell him all the concerns you have (now that you have had time to think)---saying "I thought about this, I'm worried, are you sure about waiting 3 months, is it safe, and could you help me by explaining this better so I can sleep."

The reason is, my endo. told me that sometimes, even if the tg rose a little, it would take a while for the tumor to grow big enough to treat---either by RAI or by surgery.

I remember reading something on the computer by a doctor at sloane kettering, which you may be able to find somewhere, about rising tsh, and when to treat recurrences and such. I've been to 2 endos, checking up on my old one, she had different philosophies than the one I've been seeing , she's old fashioned, and I'm definitely going back to my old one.

 
Old 08-08-2009, 08:35 PM   #5
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Re: Saw endo yesterday for follow up..lymph node

Hi Reece,
I don't know if you remember, but I went back in April for a second opinion at the U of Mich, just to see if the endo at a large teaching institution has the same protocol for follow up as my local endo. Which they did. No WBS only TG tumor marker, with US only if concerns. The endo at U of M said small tumor, risk of recurrence very very small, etc. which I HOPE still holds true!!

Anyway, what I did is e mail him earlier, I have never e mailed a doctor!!! At my appt at U of M, he said I could contact him with any questions, well, I hope it was okay to send an e mail. I asked for his advice, and if he thought it was prudent to wait 3 months, or do I need to make the trip to see him again. Hopefully, he will get it and respond to me, and then I will go from there. I value his expertise, he was SO thorough.

I am not going crazy over it, but do wonder what the tissue is where the isthmus was, and wonder why he scribbled out the thyrogen scan, and about the lymph node being above the limit.......
Thanks for your advice, I will post if and when I hear from the doc at U of M, otherwise, I am sure I will be calling for some clarification. My hubby says my prognosis was so good from the start, and that these little things will always be there, and to trust the doc......we'll see.

Thanks again, and it is nice to see you trust your old endo. {even more now!} Are their philosophies really that different? That for me has been tough, all the differing protocols, not set protocol, it does take a lot of educating yourself, and going with what we are personally comfortable with. My endo, was not initially, even going to do 1x yearly ultrasounds, and look now where I am at....good to ck on these things. I asked for 1x yearly US myself, and he basically said ok.

When I go back in 3 months, he did order TG testing again, too. My TG now is undetectable. TSH 0.20, and FreeT4 was 1.4 {0.6-1.6} he was pleased with the #'s. He did say that the rad. did not have all the info in front of him as far as TG goes, and that he prob. did not want to comment on it, seeing the enlarged LN, he said I could have had the enlarged LN with a TG that was sky high, and that we need all the pieces of the puzzle.....makes sense to me!! I hope I hear from U of m, soon!!
Thanks as always,
Lori

 
Old 08-08-2009, 09:19 PM   #6
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Re: Saw endo yesterday for follow up..lymph node

Sounds like you made the right choice!

Sometimes we just have to be a little pro-active in our own health care.. These dr's get soooo busy and probably see so many pts that I really believe sometimes things can get overlooked. But it sounds like your dr is very complete with everything!! That is great!

I am still struggling myself. I am beginning to wonder if ANY amount of medication will make me feel good or if I will always just feel sick and horrid. It seems like my dosage is so high compared to what everyone else takes and I still can't seem to get leveled out. Uggg...

 
Old 08-09-2009, 05:08 AM   #7
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Re: Saw endo yesterday for follow up..lymph node

Quote:
I am still struggling myself. I am beginning to wonder if ANY amount of medication will make me feel good or if I will always just feel sick and horrid. It seems like my dosage is so high compared to what everyone else takes and I still can't seem to get leveled out. Uggg...
Did you get your adrenal function tested with saliva cortisol testing? This is the number one reason why some can't tolerate or get well with thyroid hormones. The adrenals must be functioning well and producing enough cortisol to move the T3 into the cells for metabolic health.

 
Old 08-09-2009, 05:19 AM   #8
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Re: Saw endo yesterday for follow up..lymph node

Lori, I pm'd you about my doctor conflict---let us know what happens with the next dr.


Kat---don't know what your dosage is, but everyone has a different one. My mother in law is on 250 mcg range of synthroid (it actually might be higher), and I'm on 175 mcg range, so I wouldn't give up, every one is different.

Last edited by Reece; 08-09-2009 at 05:58 AM.

 
Old 08-09-2009, 07:13 AM   #9
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Re: Saw endo yesterday for follow up..lymph node

Kat,
I am so sorry for your issues. It seems like it has been very difficult for you. You certainly deserve to feel well!!!
I hope you find the right doseage soon!!
Take care,
lori

 
Old 08-09-2009, 07:17 AM   #10
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Re: Saw endo yesterday for follow up..lymph node

Reece,
It took me a while to find the PM.....ha.
Anyway, I "tried" to send you a message back, and it wouldn't send. Sorry.
Anyway, Glad you figured out what endo works best for you. I will let you know "if" and when I hear from U of M.
Thanks, and have a great day!!
Lori

 
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