# To fire my endo or not??



## teri2280 (Feb 7, 2012)

Gonna use a lot of short hand. Not everyone knows my story, but for those of you that do, I'll try to make it as painless as possible. 

-Found goiter in Jan. 2011 @ PAP smear. Gyno at the time ran T4 and TSH (TSH was somewhere around 1.7ish, not sure on exact #, and can't remember T4), which were both in the normal range. Said she'd monitor it. Didn't. Forgot all about goiter.

-Found goiter in Jan. 2012 @ PAP smear. New gyno. Told me to make appt. with PCP, who had me do thyroid panel, cholesterol, sugar tests, and a RAIu scan. PCP got those results, ordered an u/s. (None of which I actually know the results of.)

-PCP refers me to an endo. There's only one in my town, and his reputation wasn't that great, but my PCP was kinda worried, so I went to him. While in my consult, he suggested surgery, and I also remembered the goiter diagnosis from 2011.

-Met with surgeon in mid Feb. Told me she was 99.9% sure it was cancer. Checked lymph nodes. Nothing indicating cancer (as of 2/18/12).

-TT on 3/16. Got path rpt. back shortly after. Thyca, with lymph node involvement (cancer in 2 of 12 nodes removed).

-RAI (100mci) on 6/1, with a WBS on 6/11.

~~~~~~~~~

I am seriously considering firing my endo, and having my PCP take everything over. Has anyone done this? Or do we thyca survivors NEED an endo?

I am sick and tired of being sick and tired. I don't think that I'm converting T4 to T3 (because I felt INCREDIBLE when I was on only T3 before RAI), but when I suggest it to my endo, he blows me off, telling me it's all in my head. I'm on week 7 of going back on my meds after hypo-hell, and the only thing I have energy for is my 8 hour work day. (Right now, I'm camped out on the recliner with the laptop, planning on getting a shower and going to bed after this post is posted, and it's only SIX THIRTY! I've been up for exactly 12 and a half hours and I'm about ready to go to bed! ) My endo wants to do another body scan 3 months after the first, but it's been a MONTH since I was told that I'd receive a call to schedule it, and guess what? I haven't heard SQUAT, and when I call, am blown off by his secretary. The secretary mentioned something about thyrogen for this scan coming up, and when I asked her if he wanted RAI ablation again (something I will flat out REFUSE, but I don't see why else I'd need the thyrogen?!?!), was told that I'd have to ask the scheduler (who can't call me). REALLY?!?! The SCHEDULER is going to know more about this than the endo's secretary??? And what in the HELL is the point of a scan after 3 months??? Am I really that "high-risk" of it coming back that quick?? If so, you need to TELL ME!! 
Since my TT in March, this endo has done labs on me twice. Yes, only twice in 5 months. I had one set (T4, TSH, and thyroglobulin only, since he apparently doesn't believe in frees) on 3/28 post surgery (in my signature, less Tg), and at the end of May when I was in hypo-hell for RAI. My first appt. with him following RAI isn't until the middle of SEPTEMBER. I'm sorry, but there is NO WAY IN HELL that it takes 3 effing months to regulate levels after RAI. It's just not possible. My Tg tests also have to be sent out to USC for whatever reason. Supposedly it's because I have Tg antibodies, but those antibodies were found after TT but before RAI. From what I've found online, if there was any residual thyroid tissue that the surgeon missed that had cancer in it, OF COURSE I'd have those antibodies. But according to him, I have those antibodies naturally, so everytime I have a Tg test run, it has to be sent out.

Whoo. I kinda feel a bit better after that. Sorry this ended up turning into a vent session, that was def. not my intent. My hubby listens, but he doesn't really understand what I'm going through. I love him to death, but what I usually get is a "smile and nod" type of thing.

Have any of you fired your endo post cancer (and more specifically had your PCP just do the stuff)? I'm seriously at the breaking point with this guy and his office. They won't listen to me, treat me like I'm a number, and to be honest, it's looking like this 3 month body scan is just something concocted to fatten his paycheck. I would LOVE for my PCP to just take over everything, but he's just a DO in a family practice, and I'm not sure it's something he'd be willing to take on. I REALLY don't want to "scare" him, so I'm trying to do some research before hand. If I need an endo now, fine, I'll find a new one, or go to my surgeon, who I know would take me on in a heart beat, but I'd honestly rather just have my PCP do it. He's been my PCP now for over 12 years, and I totally trust him (unlike my endo) with EVERYTHING.

Thanks for listening (and letting me vent lol), and if anyone has any thoughts on firing the endo, that'd be great!


----------



## Lovlkn (Dec 20, 2009)

Call your DO or go into see him and ask him his opinion and if he would be willing to treat you.

I am being treated by my DO for my replacement but do not have the experiences with cancer that you do.


----------



## Octavia (Aug 1, 2011)

I am post cancer and have never once seen an endo. My physician sent me to an ENT...my ENT did my surgeries, and no I am in the care of a radiation oncologist (that seems to be the protocol at this large teaching hospital). But if I was not int he care of the oncologist, my primary care physician would be happy to treat me...in fact, she offered to manage my thyroid stuff.

Bottom line for you is that this doctor is not taking you seriously. You deserve to be treated by someone who at least pretends to care.


----------



## lainey (Aug 26, 2010)

> I'm sorry, but there is NO WAY IN HELL that it takes 3 effing months to regulate levels after RAI.


Yes, it does, maybe even longer. It takes at least 6 to 8 weeks for the replacement to build up in your system again after being off it for RAI. 3 months is a little long, but not unreasonable amount of time to retest, especially if you started again on your previous dose. Ultimately, the goal will be to keep your TSH suppressed, as is the case with most Thyca patients.



> From what I've found online, if there was any residual thyroid tissue that the surgeon missed that had cancer in it, OF COURSE I'd have those antibodies. But according to him, I have those antibodies naturally, so everytime I have a Tg test run, it has to be sent out.


The endo is correct here, these antibodies occur naturally and are not due to residual thyroid tissue. Your tests for thyroglobin will always have to be sent out because of this.



> And what in the HELL is the point of a scan after 3 months??? Am I really that "high-risk" of it coming back that quick??


You have lymph node involvement, and thyroglobin antibodies that interfere with the standard blood test monitoring. You tell me, don't you want to follow up on that? Do you really think the doc would suggest an extra scan if it wasn't necessary? Thyrogen, if you can get it, will let you have the scan without going hypo or the LID.

Once you are stable, no, you probably don't need an endo. However, the replacement and scan routine after cancer with lymph node involvement and Tg antibodies is not as straightforward as for some with less complicated cancers. You are going to need to find someone with expertise in this area if you don't like this doctor--I don't think your PCP qualifies.


----------



## Octavia (Aug 1, 2011)

Lainey, thanks for posting a well-thought-out response. I like what you have to say far more than my response!


----------



## Andros (Aug 26, 2009)

teri2280 said:


> Gonna use a lot of short hand. Not everyone knows my story, but for those of you that do, I'll try to make it as painless as possible.
> 
> -Found goiter in Jan. 2011 @ PAP smear. Gyno at the time ran T4 and TSH (TSH was somewhere around 1.7ish, not sure on exact #, and can't remember T4), which were both in the normal range. Said she'd monitor it. Didn't. Forgot all about goiter.
> 
> ...


You sure don't need an endo. What you do need is a doctor who cares. It is not that confusing at this stage. It sounds like you would benefit from dessicated porcine thyroid and any doctor can do the titration process until such time you feel great!

Your TSH should be suppressed.

With Thyca, you don't want to take a chance.


----------



## teri2280 (Feb 7, 2012)

lainey said:


> Yes, it does, maybe even longer. It takes at least 6 to 8 weeks for the replacement to build up in your system again after being off it for RAI. 3 months is a little long, but not unreasonable amount of time to retest, especially if you started again on your previous dose. Ultimately, the goal will be to keep your TSH suppressed, as is the case with most Thyca patients.
> 
> The endo is correct here, these antibodies occur naturally and are not due to residual thyroid tissue. Your tests for thyroglobin will always have to be sent out because of this.
> 
> ...


You make some good points, and I appreciate your answer. You are the first "source" (for lack of a better term) that can verify that those antibodies do occur naturally. I do have a question though. (I question almost everything lol. And I'm not trying to be a pain, just trying to understand better.) If the thyroglobulin antibodies were discovered post TT but pre RAI, how do we know that they *are* occurring naturally? I mean, we got the "official" cancer diagnosis post TT (no FNA - there were a bunch of calcium deposits, and my endo didn't want me to get stuck with a needle 20 times just to get one good reading, and the surgeon was 99.9% sure it was cancer just by looking at my ultrasound) but before RAI, so this just seems like a "duh" thing to me. Or is it just possible that the number was something wacky like 3000 when it "should" have been 20 that deduces that I have the antibodies? (I don't have the actual results of that test.)

Also, aren't naturally occurring thyroglobulin antibodies one of the diagnosing factors for hashimoto's? (I've also seen it in reference to Graves', but I KNOW I've never been hyper, so dismissing that part. ) Symptoms of Hashimoto's are:
Constipation
Difficulty concentrating or thinking
Dry skin (have it, big time)
Enlarged neck or presence of goiter (had it since at least 2011, cancerous in 2012)
Fatigue (have/had it)
Hair loss (OH. MY. GOD. YES. Have had for about 4 yrs now.)
Heavy and irregular periods (had it before going on depo in 2008)
Intolerance to cold (wouldn't say THAT, but have woken up sweating and later freezing in middle of night many times both before and after TT. Kinda like a hot flash, but that better not be the case since I'm only 32!)
Mild weight gain
Small or shrunken thyroid gland (late in the disease)
Other symptoms that can occur with this disease:
Joint stiffness (have and had it)
Weight gain (unintentional) (Have it now, post TT - went from a 22 down to 16 before TT, back up to a 20 since March, with no change in diet/exercise)
Swelling of the face

I'm seeing that Hashimoto's is diagnosed based on 4 tests: Free T4 (low, which I've never had tested), TSH (high), T3 (low or normal, don't think I've ever had done), and of course the Tg antibodies. Now I have another question. Before my thyca diagnosis, even before the 99.9% sure from my surgeon, everything I found online pointed to TSH and T4 (at least) being abnormal in thyca. This is not always the case, and I am living proof. My #s have always been in the "normal range". What I'm getting at is that if my TSH was "normal" but I still had the cancer, couldn't a normal tsh go along with hashimoto's? Is it possible that I've had undiagnosed hashimoto's that caused the goiter?

I'm sorry for all of the questions. I'm still trying to get to the bottom of just how all of this came about. I know that you guys can't diagnose me just based on symptoms alone, I'm just looking to see if my theory is possible. Hypothyroidism runs in my family on my mom's side, but both cases are mild. My mom and my aunt are both on 50 mcg. of synthroid for it. My aunt's was discovered during a cholesterol screening 10 yrs ago, when she was 40, my mom's had yearly blood tests since my aunt was diagnosed, and it was just this year that she had issues, at age 62. There are absolutely zero other thyroid issues in my family (at least diagnosed ones - hard telling if my great grandmother had it or not back in the 30's lol) on either side.


----------



## joplin1975 (Jul 21, 2011)

You should be able to get the Hashi's dx from you path report for surgery, which will be way more accurate than anything related to antibodies.


----------



## lainey (Aug 26, 2010)

> Also, aren't naturally occurring thyroglobulin antibodies one of the diagnosing factors for hashimoto's?


Antithyroglobin antibodies are against the thyroglobin, which is produced by the thyroid, they don't impact the thyroid itself like the others (TPO and TSI) do. They are not used to diagnose Hashimotos, because these particular antibodies occur in people without it. It is for this reason that they persist even after the thyroid is removed, while the others will dissipate if you have them.

Why does a Hashi's dx matter at this point? Hashimotos is not really material anymore. It is a cause for thyroid failure--ie the antibodies attack the thyroid and interfere with it's function--and a diagnoses for the reason for thyroid disfunction (there can be many, it is only one). It doesn't cause cancer per se, but it is a risk factor for it. Either way, your treatment post surgery--replacement medication--is the same, with or with out antibodies. Generally, once you have had the thyroid removed the antibodies no longer have anything to act on, they slowly dissipate.

Could you have had a thyroid problem before your surgery--sure--but if you had testing, anything other than something mild would have shown up. Did it cause the cancer? That's debatable, but probably not. Could the cancer have been detected with blood testing? No.

The question, does it matter? Things like cancer happen, you can't change WHY it did. Treating the Hashi's if you had before would not have prevented the cancer either. Even Hashi's as a risk factor is debatable--thyca is found more often in people with it, because these people have more nodules, and get more screening than the general population. Thyca is found, on autopsy, in almost 40% of the general population--it is that slow growing and asymptomatic.

At this point, the primary point of your bloodwork is going to be to test to see if your TSH is suppressed, and to look for recurrence through the presence of thyroglobin (which is where those pesky antibodies interfere). The endo likely won't run the other thyroid antibodies (they're unnecessary), and hopefully will run the frees.

In the meantime, give the meds a chance to kick in, and keep in mind that like any pendulum, it still swings slightly before it stops, so it will take a little while--and we are talking in terms of months here, not weeks-- for your levels to stabilize so that you can see what dose or combination is going to be the most effective


----------

