The THYROID Thread

[dischick4778]

Well I am back from the eye surgeon/dr. and it was not good news

I am glad dh was with me for sure. I think I had about 6 needles in my eye/tear duct area. It was actually one needle I think but she kept jabbing it alot. After about the 3rd time, she told me to try and hold really still. I asked her if dh could hold my hand. He did. Later he told me I had a vice grip on his hand

She told me that the radiation has scarred and damaged my L tear duct. I need to have surgery and they will create a new channel and put about 6 stints in it that will be taken out in about 6 weeks.

The only good thing is that she is pregnant and going on maternity leave and wont be back to april, so the surgery will be scheduled then. She said I could wait since I have had this for a while but if it gets infected I have to call another surgeon and he will do it. The other guy has operated on people from my church so I know he would be ok too.

She said I will have it in the main hosp. due to my medical history and I should come home that day and it will be about an hour long. I just think I need the time to prepare myself again for this. I hope it does not interfere with my May disney trip or I will wait till June.

I asked her what if I need radiation again, will this happen etc. She said she would treat me pre radiation and operatively put stents in both eyes just to keep them open so the scar tissue wont form.

So there you have it, another adventure on the thyroid cancer coaster.

Oh and I scheduled my blood test for saturday. If that is bad news, I will deal with it but I wont be so happy. But God is always there for me, so this will be a piece of

She said she could do the surgery up the nose with the scope but I told her I didnt think that was such a good idea as the ent surgeon already told me there were problems there that I was born with. I told her she could look at his pictures etc. So she said it would just be better to cut my face since that is the procedure that has better results.

The one thing that bothered me was that when I went to my regular eye dr. and told her the endo thought something was wrong with my tear duct, all she did was just press against it and said nothing was wrong. This is the dr. who has ovarian cancer and showed me her port etc, so I felt bad and didnt want to press the issue. Then when I went for my endo check up again in July she saw the tears and told me to go to this specialist at the univ. hosp. I told dh, it seems that only the univ. drs. etc. and not our normal ones around here can ever diagnose stuff with us. Its very disheartening. Dh said just go to the univ. next time for anything etc. Dh also had a problem that the reg. gastro guy here said was nothing. The univ. dr. said dh was one of the worst cases he had etc. So lessons learned, follow your gut, your great endo and dont take no for an answer.

I'm sorry to ask but I guess I'm not all caught up - are you saying the RAI damaged your tear ducts? I didn't realize that was possible. What were your symptoms if you don't mind me asking. I'm curious because lately my eyes have been tearing like I'm crying for no reason. I thought it was allergies, never related it to my thyroid issues. Is this what happened to you?

Sorry to hear that it's so complicated and I truly hope its a smooth process for you.

 

[luvmarypoppins]

Thanks everybody for the tips. I have been trying to get all grocery shopping, cleaning, etc done this week so I don't have to worry about it next week after the surgery. I also see an oncologist/hematologist who has been watching a couple lymph nodes (when I first went to the Endo she thought I was presenting more with a lymphoma and she sent me to him) and he has coordinated with the surgeon to remove those as well....looks like Monday is going to be fun.

I will keep you all updated - thanks again!!

Wishing you all the best Monday. You will be in my prayers. That was interesting that you said about the lymphoma because they thought during one of the 5 times they were biopsying me that I might have lymphoma too.

 

[luvmarypoppins]

Jenn - that is what exactly happened to me. People were asking me, why are you sad etc. I said I am not, my eyes just keep tearing. Sometimes in the morning there would be some crusty stuff around my eye too.

And as I now know, you cant just push on the tear duct and say its only blephitis or something like that and say nothing is wrong. Eye drops wont help it (this is what my regular eye dr. did).

This specialist I went to is an ocular reconstruction surgeon, cosmetic eye surgeon and also does thyroid eye disease. She knew exactly everything and explained it to me.

Well if you are having those symptoms too, I would say go to an eye doctor, but they will have to do the thorough testing for a blocked tear duct, not fun, but it gives you an accurate diagnosis.

 

[4under4]

Well I had my pre-op appointment with the surgeon and I am having a TT on the 19th of this month. My surgeon specializes in thyroid and promised to do his best to hide the scar (I think he is more concerned with the scarring then me). I am 25 and already have a couple other scars..one more is not a big deal

I am starting to freak out a little; its just so "real" that the surgery date has been set up. I am taking 3 wks of work to be safe (I have a very physical/stressful job) do you think that should be ok? Also, do you all have any tips/tricks for after the surgery?

Thanks

I was worried about scarring, but my (wonderful!!!) Surgeon offered to use surgical glue at the skin level. It is nearly UNDETECTABLE less than 2 years post surgery. Might be something to talk to him about before you go you. Good luck with your surgery.

 

[1Grumpy9]

I went to the family doctor this morning and he said I was down 10lbs from the last time I was at their office (March 2011). Now I know that I was at least 4 lbs heavier when I went to the endo the beginning of August. So far with the change of meds, I am down 14 lbs!!! I am extremely happy about that!!!

 

[dischick4778]

Jenn - that is what exactly happened to me. People were asking me, why are you sad etc. I said I am not, my eyes just keep tearing. Sometimes in the morning there would be some crusty stuff around my eye too.

And as I now know, you cant just push on the tear duct and say its only blephitis or something like that and say nothing is wrong. Eye drops wont help it (this is what my regular eye dr. did).

This specialist I went to is an ocular reconstruction surgeon, cosmetic eye surgeon and also does thyroid eye disease. She knew exactly everything and explained it to me.

Well if you are having those symptoms too, I would say go to an eye doctor, but they will have to do the thorough testing for a blocked tear duct, not fun, but it gives you an accurate diagnosis.

Thanks for the info. Is it possible for this to happen a year later? I have been fine as far as my eyes are concerned until the past month. My surgery and treatment were June/July 2010. I have an appointment with my endo in a few weeks and plan to ask her. Eye doctor appointment would be next.

 

[luvmarypoppins]

WDW Dancer - said some extra prayers for you today

Jenn - I dont know, but I told her I did get the original symptoms not too far after the rai. I would definetey get it checked out, you only have 2 eyes.

Well someone from the endos called. I dont even know who she was, she said "Oh I normally dont do this. She said, the dr. wants me to tell you the blood tests were good?? I said are you talking about the blood tests I just had saturday? and she said yes, Wowsa, that was so fast for sure. My reg. dr. takes 5 weeks to call me back. So I told her I was expecting to talk to the dr. as I wanted to tell her I was so, so tired, wanted to tell her that I needed surgery etc. She said, oh are you having palpatations? I said, sometimes I get them, she knows about it and I havent been to the cardiologist yet. She said, oh it sounds like she should call you, I said YES!!

Then she was giving me the reclast run around. That is so frustrating. I need this infusion as the synthroid is ruining my bones and I cant get the med etc. I tried getting it before and all I get its the run around from the ins. co., its covered but they dont know how to get it with the right provider etc?? Frustrating for sure. They said they would get it for me, I told this lady that. She said, oh I think thats only for medicare patients, O.K . I dont know who or what to believe anymore.

And I totally forgot they cancelled my Jan. visit and I needed to rebook it because...

I am totally stressed right now as my dh was involved in an accident that totalled our van. The other girl was talking on her cell phone and ran a red light the guy behind my dh saw her talking. My dh was going 45 mph I think he said. Praise God he was safe, only a sore knee. A second or two sooner or later and he would have possibly not made it. Things can be replaced, but my dh is def. not replaceable

Christine - so they said either my tsh I think is .01 and last time, in July it was 0.02 so she said to still stay on the 175 synthroid, Does this sound right? This girl was confusing me about everything. I would have much rather spoken to the endo as I usually do.

 

[mrsklamc]

Thanks for the info. Is it possible for this to happen a year later? I have been fine as far as my eyes are concerned until the past month. My surgery and treatment were June/July 2010. I have an appointment with my endo in a few weeks and plan to ask her. Eye doctor appointment would be next.

I don't know about eyes but I had virtually no symptoms and then 10 months after my first treatment dose my cheek puffed up like a chipmunk while eating. They told me that since the RAI continues working over time....

So while I hope that's not what it is, I would def. get it checked ASAP.

 

[mrsklamc]

LMP- I am so glad your DH is ok.

It is so frustrating when you don't get the answers you need.

 

[Christine]

Christine - so they said either my tsh I think is .01 and last time, in July it was 0.02 so she said to still stay on the 175 synthroid, Does this sound right? This girl was confusing me about everything. I would have much rather spoken to the endo as I usually do.

Well, that's not much of a change. In fact 0.01 is LOWER than 0.02 so that would mean you are more hyper. Are you sure she didn't say 0.1 versus 0.01? 0.01 is almost totally supressed while 0.1 is still below normal but closer to normal (that starts at 0.5). At any rate, I can't imagine that you would be tired at 0.1? Do you think you can get that clarified? I would probably ask if you could get a copy of those results and offer to go pick them up (they are much more amenable to giving them out if they don't have to deal with mailing them).

 

[luvmarypoppins]

Well guess who just called me back, my wonderful endo, gosh I love that lady!!

She said the TSH is 0.01 and the T4 is 14.6. She asked me if I wanted her to lower it if I was jittery. I said no, the problem is I am so tired. She said she does not know why. Hmm, I am thinking of seeing that cardiologist. Heart problems are bad in my family as I am the only one alive right now and they all died at a pretty young age from heart stuff.

She rescheduled my visit herself, wowsa! One day I might just call the office to verify that. She said she put me in her black book, gosh, even the rad. onc. has one of those too. Must be something they do there?

She is checking with the office about getting me the reclast again and she told me to take 600mg of calcium a day, she said tums was fine. I told her my bones hurt alot.

Went over the eye stuff. She said as soon as I told her my symptoms she knew what it was. She said its pretty common after the RAI. She says she has other patients who have had this, so its not just me again. I forgot to ask her but...
Christine, do you know any info about this RAI and the eye stuff. I was wondering if the dose matters at all. As mine was 200 and Jenn is complaining about eye issues and I think her RAI was 150?

 

[Christine]

Christine, do you know any info about this RAI and the eye stuff. I was wondering if the dose matters at all. As mine was 200 and Jenn is complaining about eye issues and I think her RAI was 150?

I don't know about the eye stuff. I had three doses (29.9, 150, and 150). I do have eye issues. Dry eye to be specific. But my onset was in 2002/2003 which was about 5-6 years AFTER my last RAI treatment. I can't really blame it on that I guess. I did get the salivary gland issues, just like Micayla did, about 8 months after my first large-dose RAI.

I use Restasis regularly and it gets me through. But for some reason, my eyes no longer produce much moisture.

 

[mrsklamc]

LMP- I was tired when I was hyper, because I could not sleep.

 

[dischick4778]

I did have 150 of RAI last year. My Endo is still out on maternity leave so I'm going to wait for my appointment with her mid October. It's not so bad and some days I don't notice it at all. We will see. Just not comfortable with my endo's fill in after she prescribed me the wrong dose of Synthroid.

 

[WDWDancer]

Thank you everybody for the prayers. I came home late last nightafter 2 nights in the hospital. The surgery went alot faster then they expected; according to the surgeon I have the pefect neck for these surgeries (I guess that was a compliment) LOL My thyroid was much more diseased then they expected with innumberable cyst and tumors all over it. I am still waiting on the path report but he said there was nothing that struck him as alarming so keeping our fingers crossed for the best.

I lose my voice at times and it is a lot weaker then normal but at least I can still talk. My biggest complaint is just being sore; trying to find a comfy way to sit/sleep.

Thanks again

 

[luvmarypoppins]

WDW Dancer - so glad you are home from the surgery and recovering.

The voice will come back over time. I was told, just dont shout or try to raise your voice because that just makes things worse as they are healing.

I slept with about 3 pillows and adjusted them accordingly.

I liked resting in the lazy boy recliner as opposed to the couch. More support for the back of my neck.

How is the eating/swallowing going?

Bet you will be glad when you get the path report. But your dr. does sound encouraging. So hopefully you will get some good news.

Wishing you all the best.

 

[dischick4778]

Thank you everybody for the prayers. I came home late last nightafter 2 nights in the hospital. The surgery went alot faster then they expected; according to the surgeon I have the pefect neck for these surgeries (I guess that was a compliment) LOL My thyroid was much more diseased then they expected with innumberable cyst and tumors all over it. I am still waiting on the path report but he said there was nothing that struck him as alarming so keeping our fingers crossed for the best.

I lose my voice at times and it is a lot weaker then normal but at least I can still talk. My biggest complaint is just being sore; trying to find a comfy way to sit/sleep.

Thanks again

Feel good! Rest up!! Just remember to accept help from those around you and not try to do too much yourself. Wishing you a speedy recovery.

 

[luvmarypoppins]

OT - Micayla, I thought of you when dh told me this today. Our rent a car because of the accident has Indiana plates on them, hmm, nice blue color, but here in NY they stick out like a sore thumb.

But at work, someone came up to dh and asked if he was from Indiana, no, told them the accident story. They said they went to Univ. of Indiana and have not met anyone from IN here in NY.

Its the closest I am gonna get to you and IN.

 

[WDWDancer]

Thanks everyone - yep I have been sleeping in the recliner and with tons of pillows. The eating/swallowing is better...I really noticed the difference in food textures (strange to me). I went out for the first time yesterday to a friends housewarming after a hour I was wiped out. The scar is starting to itch and I cannot wait to get the bandage off Tuesday

Did any of you have ridicioulsy low blood pressure? Mine had been running borderline high until the surgery. The entire time up I was in the hospital and still it is running very low 90's/50's I feel ok not dizzy or anything just strange....

 

[WDWDancer]

Well back from the surgeon and surprise of all surprise's they discovered Papillary Carcinoma. It was a small area and did not spread outside the thyroid. I have an appointment in the morning to see the Endo and discuss what's next.

Question for those of you who have gone through this will I do the radioactive iodine??