# Hashis and surgery



## surge (Aug 15, 2012)

So, I met with a surgeon yesterday-- one of the best endocrine surgeons in the area. he told me he takes out 4 thyroids 'on a Monday'-- this is all that he does. And he also told me that he hates to operate on hashis patients because of the inflammation. That makes it much more likely that vocal chords will be damaged or parathyroids will be removed too. He said he'd do the surgery if I decided I had to have it done, but since I'm 37, he's concerned about 'a lot of years of calcium pills' if I lose a parathyroid gland. And he says vocal chord damage is a real possibility. I'm not sure what to do. I decided to take the month to explore a few things: 1. going completely GF (I flirt with it and have gone a month without before). 2. trying an NP.

Did anyone with pretty wild fluctuation-- feeling hyper for half the week, great for a couple of days and hypo for 1-2 days-- feel like a dessicated thyroid med did help? I'm just concerned that I already feel so hyper so frequently (tremor in left hand; heart palps-- frequent PVCs and PACs; some times of tachycardia, but in sinus rhythm, just a sped-up heart in other words; insomnia.) I'm concerned the T3 will be nasty. I have very little hair left. But my weight fluctuations have stabilized. I go up 2-3 pounds depending on how I'm feeling.

I like that I have the surgery option. I just don't know how long I should try other things first (my endo assumes I'm getting surgery. So does my primary. Their plans for me are to follow up after surgery). I also know he's a good surgeon...BUT It makes me a little squeamish that he literally said, "I hate operating on hashimotos patients" and then he really tried to talk up the scar, like that's a real reason not to do surgery. I had to say to him: "look, I'm not excited to have neck surgery. I wouldn't be here if I didn't feel completely at a loss for what else to do." (this is when he said he'd do the surgery if I felt like it was worth the risks).

Do I try to find another surgeon? Do I respect his honesty? Dunno. How long would you wait before you commit to neck surgery? I'm in my 5th month of total craziness. 2 of which I've been on a very low dose of levoxyl (25 mcg). I know it's not the levoxyl but my thyroid itself.

TIA for any feedback, reflections on your own experience, advice.


----------



## Andros (Aug 26, 2009)

surge said:


> So, I met with a surgeon yesterday-- one of the best endocrine surgeons in the area. he told me he takes out 4 thyroids 'on a Monday'-- this is all that he does. And he also told me that he hates to operate on hashis patients because of the inflammation. That makes it much more likely that vocal chords will be damaged or parathyroids will be removed too. He said he'd do the surgery if I decided I had to have it done, but since I'm 37, he's concerned about 'a lot of years of calcium pills' if I lose a parathyroid gland. And he says vocal chord damage is a real possibility. I'm not sure what to do. I decided to take the month to explore a few things: 1. going completely GF (I flirt with it and have gone a month without before). 2. trying an NP.
> 
> Did anyone with pretty wild fluctuation-- feeling hyper for half the week, great for a couple of days and hypo for 1-2 days-- feel like a dessicated thyroid med did help? I'm just concerned that I already feel so hyper so frequently (tremor in left hand; heart palps-- frequent PVCs and PACs; some times of tachycardia, but in sinus rhythm, just a sped-up heart in other words; insomnia.) I'm concerned the T3 will be nasty. I have very little hair left. But my weight fluctuations have stabilized. I go up 2-3 pounds depending on how I'm feeling.
> 
> ...


Well......................he certainly was upfront and I believe the risks he made you aware of are mostly existent with any thyroid surgery.

Did you know that they can now transplant a parathyroid into the shoulder/clavicle area?

I can't see anyone waiting 20 years to see if the thyroid burns out or not plus, because you have Hashi's you are at high risk for cancer of the thyroid.

http://www.thyroidmanager.org/Chapter18/18-cancothr.htm

And, if in doubt, get a second, even a third opinion! Nothing wrong with that, at all!


----------



## surge (Aug 15, 2012)

Andros-- Just typing that out AND seeing your response is giving me some clarity. He's a surgeon at one of the best hospitals in the country BUT there are also at least 3 other surgeons that were recommended to me at the same hospital. I couldn't get in to see them until later in the month anyway, so maybe I'll go and see another. The guy didn't even really look at my file beforehand. He kept telling me he was pretty sure I had hashimoto's. Had I ever heard that term? Uh, yeah.

In another note, I just read the link you sent to Karin about iron, and discovered that while my ferritin level looks okay, it is a little low according to that newsletter (I'm at 27). My dermatologist also recommended iron for the hair loss, anyway, so I think I'll also add it into my last-ditch efforts. I'll focus on it and GF and maybe not mess with the meds since my heart is pinging up in the high 80s-100s even when I sleep. On Monday, I'll make another appointment. Patience IS a virtue and like all virtues it requires constant practice.

Thanks just for being here Andros and for bouncing back ideas. I know everyone here says it but it's true, you in and of yourself are a resource.


----------



## joplin1975 (Jul 21, 2011)

I can only relate my experience: pap cancer with three decent sized tumors with Hashi's...path said evidence of long term inflammation. In short, I had a lot of swelling.

My surgeon talked about the risks, which included parathyroid and vocal chord damage. However, he said he *never* had a patient experience either. Never.

My calcium was fine, post-op, and I was yelling at my devil dog the day after when she tried to eat the flower delivery person. I had very, very slight inflammation around my incision that disappeared within two days.

ETA, I was 36 at the time of surgery, 37 now...no calcium pills.


----------



## Lovlkn (Dec 20, 2009)

Yes... there are risks.

It sounds to me like the surgeon you consulted has a track record he is trying to keep impeccable and therefore not operating on the more difficult TT's.

Perspective...

My TSI was over 325% and my TPO was over 1850 - I don't think a thyroid could be more inflamed than that.

My surgeon made a 3/4 inch incision and removed my entire thyroid - no parathyroid damage and no vocal cord damage. She did not try to talk me out of the surgery like your guy is - go get a second opinion. She was also straight out of residency and said she had performed over 500 TT's. You need to feel good about the surgeon you choose.


----------



## piggley (Sep 15, 2012)

Just from reading what you have said Surge, you didnt get a good feeling about the Dr you saw, sometimes its good to listen to your intuition. 
I think I'd be also looking at talking to someone else as well, first.
PS<He sounds a bit of a drama Queen )


----------



## Andros (Aug 26, 2009)

surge said:


> Andros-- Just typing that out AND seeing your response is giving me some clarity. He's a surgeon at one of the best hospitals in the country BUT there are also at least 3 other surgeons that were recommended to me at the same hospital. I couldn't get in to see them until later in the month anyway, so maybe I'll go and see another. The guy didn't even really look at my file beforehand. He kept telling me he was pretty sure I had hashimoto's. Had I ever heard that term? Uh, yeah.
> 
> In another note, I just read the link you sent to Karin about iron, and discovered that while my ferritin level looks okay, it is a little low according to that newsletter (I'm at 27). My dermatologist also recommended iron for the hair loss, anyway, so I think I'll also add it into my last-ditch efforts. I'll focus on it and GF and maybe not mess with the meds since my heart is pinging up in the high 80s-100s even when I sleep. On Monday, I'll make another appointment. Patience IS a virtue and like all virtues it requires constant practice.
> 
> Thanks just for being here Andros and for bouncing back ideas. I know everyone here says it but it's true, you in and of yourself are a resource.


Aw, shucks!! You are very welcome! Keep us informed on this.

Yep; you do need iron; 27 is awfully low. I have heard over the years that liquid Floridix is excellent. Not sure of the spelling on that one. It comes in flavors. LOL!!!


----------



## surge (Aug 15, 2012)

piggley said:


> Just from reading what you have said Surge, you didnt get a good feeling about the Dr you saw, sometimes its good to listen to your intuition.
> I think I'd be also looking at talking to someone else as well, first.
> PS<He sounds a bit of a drama Queen )


Totally true. This board helped me decide that I still probably need surgery, though I'll take the next month to 6 weeks to really focus on iron and eating clean in case there is some issues on that front, and see if I notice any easing of the hyper symptoms. Regardless, if I do decide I need the surgery, I definitely don't want this particular surgeon. There are two others who come highly recommended at the same hospital. (I do think he's concerned about his 'record'. He said he's only ever taken out a parathyroid before and it was in a hashis case).

I also know that I don't look on paper like I need this surgery, so I can understand/can handle some questioning and it's good for me to think through, and one thing that really helps that process is hearing other people's stories, so thanks every one for weighing in.


----------



## Sarah31905 (Sep 3, 2012)

My surgeon explained all of the risks to my husband and I. Never once tried to talk me out of surgery. He did tell me that Hashimoto's patients are a little harder to operate on due to the act that if they squeeze the thyroid too hard when pulling it out then it can "dump" thyroid hormone. He assured us that he personally has never had this happen. He also informed us that he did have one patient that had damage to the vocal cord nerve and explained why. The patient had a cancerous tumor that had wrapped around the nerve and the only way to get the tumor was to cut the nerve. That will not be my case. I feel so comfortable and confident in my surgeon that I am going through with the surgery. When you have a surgeon that you feel that comfortable with then you just feel you won't be one of the very low statistics. I would recommend getting a second opinion from another surgeon.


----------



## Texaschick (May 26, 2012)

Hi surge, I had a really bad inflamed thyroid (especially left side)...before the surgery the anesthesiologist told me that the tube they use has beepers that alarm them if they are getting any where near the vocal chords...I had no problems with parathyroids. Calcium level never dipped...I normally have low bp/pulse but had episodes of spiking (would happen out of the blue)...sooooo I was glad to see that bad boy gone! Surge, at my follow up the ENT told me he could not have ordered a better surgery/recovery...I am believing that when it is time you will have the same! God bless.


----------



## Lovlkn (Dec 20, 2009)

As far as the thyroid hormone dump are those of you having surgery being prescribed lugols solution 10 days before the surgery?

The lugols firms up the thyroid for easier removal. I have not hear it mentioned by anyone in awhile so I wonder if they still do it.

You must feel good about your surgeon - I suggest going into the appointment with a list of questions (all you likely know the answer to) and see how the surgeon responds. I knew at the 1st surgeon interview (that's really what it should be) that she was the one. My endo referred me to another but I went with my gut and went to one my friend recommended.


----------



## joplin1975 (Jul 21, 2011)

Lovlkn said:


> As far as the thyroid hormone dump are those of you having surgery being prescribed lugols solution 10 days before the surgery?
> 
> The lugols firms up the thyroid for easier removal. I have not hear it mentioned by anyone in awhile so I wonder if they still do it.


I was not and did experience some dumping (hot flashes etc.). I've never heard of it, but it sounds interesting!


----------

