# Hashimoto's after TT?? No RAI after cancer removal? High antibodies?



## corn (Nov 2, 2011)

Had a total thyroidectomy 11 months ago, after being diagnosed with papillary carcinoma, endo did not recommend RAI at that time, my gut tells me I should have done this and pursued it. 
Medications having to be adjusted every 4 to 6 weeks consistantly. Antithyroglobulin antibodies came back at 266.0 normal range o.o-0.2..TSH Levels normal and thyroglobulin level low..
My symptoms are all over the place. Endo says has to do with hashimotos. 
Wondering whats next? See endo in a week for discussion. TIRED OF BEING TIRED!!
Anyone else?


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## Octavia (Aug 1, 2011)

corn, it's not too late to have RAI for that cancer, which would kill any remaining rogue thyroid cells.

This may sound like a stupid question, but did you have a Hashimoto's diagnosis prior to the surgery, or did you have the surgery solely because of cancer?

My other thought is that maybe your body takes longer to adjust to a new dosage level, so maybe it would be better for you to have labs every 8 weeks instead of every 4 to 6. That way, you're not changing doses while your body is still adjusting to the last dosage change.

You said your TSH levels are normal...what are they?


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## corn (Nov 2, 2011)

TSH was 2.6.

Had the surgery due to the risk of it being cancer and turns out it was. Was not diagnosed with hashis until most recently. From my understanding hashis can put you into hypo as well as RAI can do the same, I feel so much better since the surgery but lately all over the place. He says my meds need fine tuning and discuss antibodies at appt. I just dont want to be told I have to live with this!


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## shellebean (Oct 12, 2011)

I thoughts Hashi's would "go away" after TT...no?


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## Andros (Aug 26, 2009)

corn said:


> Had a total thyroidectomy 11 months ago, after being diagnosed with papillary carcinoma, endo did not recommend RAI at that time, my gut tells me I should have done this and pursued it.
> Medications having to be adjusted every 4 to 6 weeks consistantly. Antithyroglobulin antibodies came back at 266.0 normal range o.o-0.2..TSH Levels normal and thyroglobulin level low..
> My symptoms are all over the place. Endo says has to do with hashimotos.
> Wondering whats next? See endo in a week for discussion. TIRED OF BEING TIRED!!
> Anyone else?


I am a huge believer in instincts!! Dang; I feel for you. You have gone through all this and still have to worry. That alone must be doing you in!

{{{{corn}}}}

We have others who have had papillary cancer and I KNOW they will be right along to talk w/you about all of this sharing their own experiences.

Welcome!


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## corn (Nov 2, 2011)

shellebean, so did I..I thought I would be okay, other than adjusting of the meds..apparently I had a total thyroidectomy and have it..and if I had it before the surgery I was unaware of it! Knowing now that it is auto immune it doesnt go away. So now Im lost!!


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## corn (Nov 2, 2011)

yep, i feel incomplete, uneducated and cheated. Answers are far and few in between. 11 months and I feel like I know nothing. My ? is with no cancer and no thyroid what are my antibiodies attacking?


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## Octavia (Aug 1, 2011)

corn, with a thyroid cancer diagnosis, your TSH needs to be suppressed...lower than 2.4. The level of suppression recommended depends on your age, size of tumor, aggressiveness of disease, etc., but the general consensus is that it needs to be suppressed.

It does seem funky to me that you levels are up and down with a constant need for adjustments for a year after surgery.

Just curious - what's your current Synthroid (or generic) dose?


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## Octavia (Aug 1, 2011)

corn said:


> My ? is with no cancer and no thyroid what are my antibiodies attacking?


Good question. I'm wondering that myself. I don't know much about Hashi's, but I'm interested in what you find out. Weird.


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## shellebean (Oct 12, 2011)

Corn, did you have your parathyroids removed, too? A friend of mine had totall TT, then cysts reappeared in the place of her thyroid, (again, cancer) so they either removed or "killed" her parathyroids. So far now, all is well.


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## corn (Nov 2, 2011)

I am on 0.15MG Levothroid..and taking half a pill extra i day a week... he says he is supressing it which is why the constant changes and at the moment my labs seems ok whith the exception of antibodies and will fine tune my meds after he sees me next week along with discussing the high antibody level.
impatient i guess is what i am to hear what needs to be done, what the next step is, is there nothing else to do, is the high antibodies normal? thanks for the responses


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## joplin1975 (Jul 21, 2011)

Well....just thinking out loud here...we all know that thyroidectomies aren't clean surgeries so there was likely thyroid tissue left over. Couldn't the antibodies be attacking that lingering tissue?

Could you perhaps inquire about a follow up RAIU? My post-surgical, pre-RAI uptake scan showed [quoting my radiologist] "a decent amount of tissue" remaining.

Regardless, I agree with Octavia that your TSH isn't low enough AND that you are still a candidate for a RAI. My RAI schedule went like this: Tuesday I was given a trace amount, Friday I had the uptake scan...we saw too much remaining tissue and I was given a therapy dose (on Friday). I came back in on Monday for a post-RAI scan to confirm the cells were dying off (they were).


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## corn (Nov 2, 2011)

from my understanding they took everything!!


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## corn (Nov 2, 2011)

Joplin, I agree with you, I plan on discussing RAI treatment for sure, but will they do that on patient who has hashi's. I know they do it for graves disease, but hashi's Im not so sure of. I havent heard of this.
I think that with him fine tuning my meds after my appointment is to get it supressed, so I believe that will be done.


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## Octavia (Aug 1, 2011)

corn said:


> from my understanding they took everything!!


Even with a total thyroidectomy, it's pretty impossible to take every bit of thyroid tissue, especially with an effort to be extra careful around the laryngeal nerves and the parathyroid glands. There's bound to be some thyroid cells that are "leftover" so to speak. Like Joplin mentions, it's quite possible that the antibodies are attacking those "leftover" cells.

Here's a pic of how the parathyroid glands are embedded within thyroid tissue, so you can see why the surgeon has to leave a bit of thyroid tissue in order to preserve the parathyroids:
http://www.webmd.com/a-to-z-guides/thyroid-and-parathyroid-glands


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## joplin1975 (Jul 21, 2011)

Well, they can't really "take everything" without damaging your recurrent laryngeal nerve and parathyroids. It's why so many of us with cancer follow up with RAI, to kill off the residual cells. If the cancer was small and well-contained, then there might be a case for no RAI. Any chance you recall the specifics of your pathology report? It's *possible* (I think...but someone correct me if I'm wrong) that we aren't talking hashi's vs. Grave's treatment, but rather more/additional treatment for cancer.

ETA: Yes, take a look at the link Octavia posted. Again, I had a total and they took everything they could, but tissue did remain.


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## Octavia (Aug 1, 2011)

corn said:


> Joplin, I agree with you, I plan on discussing RAI treatment for sure, but will they do that on patient who has hashi's. I know they do it for graves disease, but hashi's Im not so sure of. I havent heard of this.


I don't know about RAI and Hashi's, but RAI is definitely standard protocol for cancer, so you've got that going for you!


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## corn (Nov 2, 2011)

Thank you Octavia I will def read and take a look at that link. Every little bit of information I can get is helpful. Seems like I go in circles with information. Very helpful!


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## corn (Nov 2, 2011)

Joplin, I agree wtih you I will have to re-look at my path report. Explanation of the high antibodies though is said to be linked to the hashimotos, so that is what Im confused about. Hashis after TT? How so? Is time for RAI treatment now? Will it make hashis worse? Thank you for your knowledge


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## Octavia (Aug 1, 2011)

joplin1975 said:


> Again, I had a total and they took everything they could, but tissue did remain.


Same for me. My post-RAI scan showed a decent amount of thyroid tissue remaining, and the oncologist said it was because thyroidectomy is not a "clean" surgery. Makes sense.


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## corn (Nov 2, 2011)

Octavia said:


> Same for me. My post-RAI scan showed a decent amount of thyroid tissue remaining, and the oncologist said it was because thyroidectomy is not a "clean" surgery. Makes sense.


hmmmm yes ..it does..


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## corn (Nov 2, 2011)

Is there a way to make hashis more tolerable... or will it always be this way, cuz I feel like CRAP!!


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## Octavia (Aug 1, 2011)

corn said:


> Is there a way to make hashis more tolerable... or will it always be this way, cuz I feel like CRAP!!


Are you only on a T4 med (Synthroid or generic) currently? You may be someone who would benefit from a combination T4 plus T3 treatment (such as Cytomel). I don't know much about the T3 meds, so I'll stop right there, but you might be able to read up on it or sift through some other threads that mention T3 or Cytomel (and there might be other relevant drugs).

But no, in my opinion, it should not always be this way. You just have to find the right treatment for you.


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## corn (Nov 2, 2011)

Octavia said:


> Are you only on a T4 med (Synthroid or generic) currently? You may be someone who would benefit from a combination T4 plus T3 treatment (such as Cytomel). I don't know much about the T3 meds, so I'll stop right there, but you might be able to read up on it or sift through some other threads that mention T3 or Cytomel (and there might be other relevant drugs).
> 
> But no, in my opinion, it should not always be this way. You just have to find the right treatment for you.


just the generic synthroid. I will have to read on the other stuff as you can tell im not very well informed of everything and how it all works, with numbers and what not. I seen my endo once since i had my surgery! Hes just been adjusting the meds, it hasnt been til recently that I have been dealing with all these symptoms and hearing my results are in that of hashi's.


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## corn (Nov 2, 2011)

Octavia said:


> Are you only on a T4 med (Synthroid or generic) currently? You may be someone who would benefit from a combination T4 plus T3 treatment (such as Cytomel). I don't know much about the T3 meds, so I'll stop right there, but you might be able to read up on it or sift through some other threads that mention T3 or Cytomel (and there might be other relevant drugs).
> 
> But no, in my opinion, it should not always be this way. You just have to find the right treatment for you.


Good call on that, went in had my appointment he did put me on cytomel so hopefully I will see some changes and feel better. As for the RAI that is still in discussion, I am now in a gray area, and my labs can no longer be used as a tumor marker to tell if it has come back or not. He doesnt feel my cancer was large enough for RAI treatment so hes not for it, but as well not against it. Scheduled for an U/S and treatement is up to me. As he said it would not hurt me to do it..so just thinking on it. But good call on the cytomel...


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## Octavia (Aug 1, 2011)

Thanks for the update!


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## Andros (Aug 26, 2009)

corn said:


> Is there a way to make hashis more tolerable... or will it always be this way, cuz I feel like CRAP!!


Welcome!

This may be of interest; it is written by our Administrator.

Read Nasdaqphil's Special Report on Hashitoxicosis here........ http://www.thyroidboards.com/hashitoxicos


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## desrtbloom (May 23, 2010)

The TT is to remove cancer or to lessen symptoms. Hashi's is an auto immune disease. There is no cure, just relieving symptoms. It can take months to get your thyroid replacement therapy regulated and you can still have symptoms. I have Graves and Hashi's and had a total TT and I still have symptoms. Although the TT has significantly my symptoms, there are still symptoms that I deal with and I honestly don't know if I'll ever not have symptoms. But I was told by my endo and my surgeon that my auto immune diseases are incurable and that the TT was to help elevate the most serious of symptoms which it has done.


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## corn (Nov 2, 2011)

desrtbloom said:


> The TT is to remove cancer or to lessen symptoms. Hashi's is an auto immune disease. There is no cure, just relieving symptoms. It can take months to get your thyroid replacement therapy regulated and you can still have symptoms. I have Graves and Hashi's and had a total TT and I still have symptoms. Although the TT has significantly my symptoms, there are still symptoms that I deal with and I honestly don't know if I'll ever not have symptoms. But I was told by my endo and my surgeon that my auto immune diseases are incurable and that the TT was to help elevate the most serious of symptoms which it has done.


yes, I just had my appointment and discovered the same thing, it's not gonna go away. Hoping the added cytomel to my regular routine will help. It has been a few days now on that and I am starting to feel tremondously better, although soon i am hoping to stay on this path, and keep hashi's at bay!! It's very frustrating to deal with and seems like it is never ending! I asked about diet and foods, and he said that I shouldn't have to change anything with that. I hear conflicting things with that, so who knows.


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