Thyroid coming out June 27

[danie17075rm]

I met with the surgeon.  I went over every symptom I have had.  He said I can very well have a pituitary problem, but my endo needs to deal with that, as it is not what he specializes in.  The doctor was nice.  It's a teaching hospital so I also had to deal with students.  He said that even though I might have a pituitary problem, most of my tests and symptoms are completely consistent with hashimoto's.  I am positive for 2 types of antibodies (that was new information).  He said that the thyroid has to come out, even if I have other problems.  My thyroid is causing too many issues and he said it felt all rubbery.  He actually made all the med students come in and feel my thyroid as it is apparently the "perfect" text book hashimoto's thyroid.  You can even feel the edges of mine. YAY, at least my thyroid is good for something lol.  I said I'm glad it can be of use to someone and they said, "hey we will get to see it when it comes out too" lol.  He said that radiation would not have been a good choice for me.  My hashimotos is so bad that different parts of the thyroid uptake the iodine at different rates.  He said this would have been really bad for me, and surgery is definitely the best option.  He can just remove it, and I will finally have a steady dose of thyroid hormones.  He also said that I should not be too expectant that this will cure everything.  He said it plays havoc on the nervous system, and sometimes it doesn't get entirely better.  He is going to examine the parathyroids while he is in there, but he really wants me to try and raise the vitamin D before surgery.  They had an opening June 1 for surgery, but I really wanted some time to take this in.  My surgery is schedule for June 27.  A few weeks before that I have a pre-op appointment and a few weeks after surgery my post-op appointment.  He said since I have an autoimmune disease, getting rid of the thyroid doesn't always help the autoimmune problem.  UGH.  I'm kind of scared that it won't make me feel better after what he said, but I do know it will give me a constant flow of hormone rather than too much or too little.  SO, that is the news.  The thyroid is going bye bye.  I don't know how to feel about it yet. At least I have some time to think. I hope this is the right decision!

[HessyKat]

I am so glad at least you have answers and it does sound that the doctor you have knows what he is talking about. You sound alot like the way mine was. Except that I start off with Graves and Hashimotos. My thyroid also had the different parts of it taking the iodine in at different rates. I think you are making the right choice by having it out. I know it is scary but I sure think that even if some symptoms might not go completely away you will feel much better than the way you are. Hang in there and everyone on here will help you through this and you will be in my prayers.

[Brucergoldberg]

I'm sure you are doing your research on this.  You do realize that even if your thyroid is gone you will still have the antibodies.   You sure you dontbwant a second opinion?   Have you seen a picture of a hashimotos ridden thyroid?   It is rubbery looking.   I'm just saying.

[goolarra]

I agree with Bruce here...a second opinion (and maybe even a third) is never a bad option. TT is seldom recommended with Hashi's except under dire circumstances, i.e. breathing and/or swallowing is impacted.  If your thyroid is that bad off, how long will it take for it to die completely, thus accomplishing by nature what surgery will accomplish?  From your other posts, I know that you have only been on meds for a very short time and haven't had time to regulate them properly.  Perhaps you should give that a chance???  It took many of us much more time than you've been at it to find our "sweet spot".  The quest to regulate hormones will not end after a TT.  Get more opinions, and in the meantime, you'll have more time to see what meds can do for you.

[danie17075rm]

He said mine was very rubbery.  In fact he said that it was so rubbery he made all the medical students come feel it because it was a text book case and you could feel every part of it.  Two of the doctors actually felt it too.  They said it was the "perfect" hashimoto's thyroid, lucky me lol.  He did tell me I would still have the antibodies, but he said it was dangerous to keep it in at this point.  I know I will still have issues, I just hope a constant flow of hormones will feel better than the constant fluctuations.  I would love to try other routes, but I can't afford the natural docs to monitor me, and I'm just so sick of being sick at this point.  I made it for June 27 though so I could think about it.  Thanks for the input.

[danie17075rm]

I am not on any meds at all.  My thyroid is fluctuation from hypo to hyper on it's own unfortunately.  In fact my fluctuations were so severe they thought it was an error!  I can't take meds, and I can't not take them.  I really don't know what else to do.  I've been suffering for 10 months severely.  I have no life.  I can't afford to go to another doc.  This is the third endo.  My uptake also showed I was very hyper.  My thyroid might die on it's own, but I'm not sure I could take this long enough to let it happen.  Thank you for the input.  I have a lot to think about.  I can only hope I am doing the right thing, but I don't know what else to do.

[danie17075rm]

Thank you!  I really hope it ends this madness.

[SassySharon]

Hope everything works out for the very best for you!   =)

[danie17075rm]

Thank you Sass, me too.  I just want a life back!

[Totie]

Personally I would have had the RAI first, then if that did not help, the surgery. For me surgery is the last, absolute last resort.

Do understand, that he is correct when he says "surgery will NOT cure everything". Be prepared for the dosing roller coaster you will be on until they can figure out which dosage you will need to be on.

Funny you mentioned Vit D levels, I just found out mine is non-existent...so trying to get that back up & recheck in 8 weeks.

[goolarra]

I'm so sorry.  There are a number of people on the forum lately whose screen name begins with "dani", and I had you confused with someone else.  I still think a second opinion is always a good idea before surgery, but my comments about meds related to another "dani".  Best of luck no matter what you decide to do...

[danie17075rm]

What is your vitamin D?  Mine is only 11!!!  I know getting that up would probably make me feel a ton better.

I thought about the radiation, but I have a 5 year old and as a single mom, I wouldn't be able to work the time away from him.  I also share a room with him, so I would never put him in any jeopardy due to my own problem.  This doc told me that he doesn't think RAI would have been good for me anyway due to the nature of my thyroid.  He said it might not work correctly and it would be a long horrible process.  I know the surgery won't be roses and sunshine either though lol.  I just also know I really don't have a choice.  I can't living like this with my heart constantly racing and not being able to breathe.  If it just cures that aspect of the fluctuations, I will be satisfied.  I know I then have to go through the dosing roller coaster, but I've been very hypo before.  I would take that any day of the week over being hyper.  I can't deal with the hyper, and I'm pretty much hyper most of the time anymore.

[danie17075rm]

No problem, I have seen the Dani's too lol.  I also believe in second opinions.  This is actually the third doc that told me I have to kill the thyroid or get it out.  They told me that I do not have any other option (hopefully they are right).  I'm a huge natural medicine type of person so I wouldn't go down this route if I didn't think it was absolutely necessary. Since I have hashimoto's toxicosis most of the time, I am hyper a lot.  This is bad on my heart!  I spent most of the last 10 months hyper, if not all of it.  

[armywife92]

My PERSONAL opinion after reading all of your posts, I think you are doing the right thing. Hashitoxicosis is a lot harder to treat than graves alone, or hashi alone. I don't understand the reason you can't take meds, and maybe I missed it, but surgery is a better option than RAI, since there are more sucess stories than RAI, and rai can actually aggrivate thyroid eye disease.

[danie17075rm]

Thanks for the input =).  The surgeon said the thyroid would uptake the iodine at different rates making the die of my thyroid very torturous and long.  He said it might even have problems due to the nature of my thyroid.  He wants me to regain a life as quickly as possible I think.  I guess due to everything together they all have recommended surgery.  I can not take thyroid meds at the moment as they make me hyper.  Without I go hypo.  My thyroid already reads hypo, or nearly perfect (even when it is really hyper as shown with the uptake). It changes so often, and is highly unpredictable.  The surgeon said in this case it is typical or hashimoto's and hashimoto's toxicosis, but there really isn't a medication to work since my labs often sit at a happy medium in the middle.  I guess they want to try the fastest and safest route for me, and it appears to be surgery.  I HOPE this is the case.  I don't really understand as much as I would like to about it, especially concerning the meds.  I just have a strange feeling I need to get it out.  Maybe my feeling is for a reason.  I hope not, but every I start to veer in another direction I know deep down it has to come out.  Thanks again for the reply.

[Totie]

My vit D level was 8, I have had issues with it before where they put me on a 10 week regime, for some reason it does not stay up. It will for a bit, but then drop.

When I had the RAI treatment, they never told me to stay away from anyone & I went home to my son (8mons old) & husband. Nothing happened. Of course that was 16yrs ago. I slept in the same bed as my husband and did the usual mommy stuff  with my son.

Unfortunatley for me hitting thyroid storms made it avoidable for the TT.

[danie17075rm]

I wonder if things have changed with RAI or just the precautions.  I was told I have to stay away from my son for a week, then I can be around him but I can't hug him and hold him a lot (he is a pretty clingy kid lol).  Then I heard you shouldn't share a bed with someone for a month!  

You are the first person I have met with D less than mine.  Lucky you lol.  That is interesting your D won't stay up.  Have your parathyroids been checked?  Mine are kind of iffy and inappropriate, but not enough to say I have primary hyperparathyroidism.  The surgeon swears he will examine them though just to be sure.  I don't know if I can raise mine or not because I can't take it!  I get REALLY sick and my heart races the minute I take even the smallest amount.  I'm not sure what to do about that.

I'm sorry you have been through so much with the thyroid.  It really takes you through such a journey.  You were hyper too?

[HessyKat]

Dani, I suffered just like you are and I was 20yrs old when it all started. I was so hyper that I didnt sleep for days upon days. I also was having a thyroid storm and I lost so much weight I thought I was dying. I went through years of the treatment with PTU, then would go hypo and have to go on Synthroid. Back and forth all the time. Finally, I started growing a goiter. It would swell up and go back down like a balloon. Craziest thing you ever saw. My sons would actually watch it swell up and then later just look like it would deflate. Then, it finally stayed big and got bigger and I began choking and couldnt breathe. That is when I finally said I had had enough. Told the Endo, take it out I cant stand it anymore. I do totally understand how you feel. I now have a mitral valve prolapse that I do believe was caused from all the hyper episodes. I really do understand how sick and horrible it makes you feel. I actually think I had a nervous breakdown at some point with mine. I pray that you get relief although It will take time afterwards to adjust the levels. Hang in there and I will keep you in my prayers constantly.

[Totie]

They never really tell me why my Vit D stays low. I just know my legs hurt real bad when it gets low. I am just an enigma as my surgeon put it. I have so many things going on that I just laugh now.

I don't know if untreated graves/hyper/toxic goiter eventually caught to my body after 16yrs or what...I personally think it did.

You would be amazed at the issues I have had in the past 2 yrs...

[Brucergoldberg]

Ps,   If you can't take meds now, what happens when they take that thing out and you have no choice but to be on meds?   You probably have some out put left.   See my post on the article everyone should read that is the bible of hashimotos studies that discusses removing the thyroid is not recommended.  

[danie17075rm]

Mine does the exact same thing.  Actually since I had the uptake I have a bigger ball on the right side of my goiter than usual.  It is probably why everyone wanted to feel mine at the hospital lol.  I have a big goiter, but its perfectly even on both sides and you can feel every part of the huge thing.  Someone was telling me that the type of Hashi's we have is a little different from most peoples.  We swing back and forth between hypo and hyper so there isn't much help for us.  I know you are eventually supposed to go hypo, but mine stays in hyper mode so much I cannot wait for that to happen.  Thanks for the help =).

[danie17075rm]

I think after living the last year, it would not surprise me at all lol.  This disease is a nasty one.  I can't even imagine the damage it has done to my body.  I have developed 2 more autoimmune diseases that I know of in the last year besides Hashi's.  I now am intolerant to gluten and have developed lichen planus (don't even ask me what this is, I don not know yet lol).  I'm really scared as to what other autoimmune diseases can happen.  

No one understands why I cannot take the D.  That must be annoying to be able to take it and still have it low.  I hope you start to feel better!

[jmamie1]

hello totie..after you had RAI did you..or do you have problems with your eyes..and how was the experience when you had RAI..i would love to know ..thank you..

[danie17075rm]

From what I understand, the reason I cannot take meds now is because I am hyperthyroid most of the time.  In fact most of the last 10 months, I have been hyper.  I fluctuate back and forth so often that there is no way to treat me.  I have actually fluctuated in a few days (and most docs didn't even believe this can happen).  I feel the fluctuations within the same day!  I cannot take meds because of this.  If I was truly hypo, life would be different.  Unfortunately I am stuck in this up and down phase that my body cannot take.  When my thyroid is out, I will be very hypo, and require drugs.  I used to be hypo and on the meds too without a problem (even though it was a small amount). I believe the difference with your case and mine is that my hashimoto's stays in hashimotos toxiscosis most of the time.  This is a little more dangerous than just having hashi's because we all have the hyperthyroidism (which has to be treated).  If I let it go, who knows when I will eventually become truly hypo.  What effects will this have on my body?  It has already done enough damage in my opinion.  My whole body is falling apart.  I do believe it is my only option due to my own personal case.  A few others on here have had a similar diagnosis like Hessy above.  In our state, we just don't have a whole lot of options.  Thanks for the input.

[Totie]

Yes....still do. I developed thyroid eye disease, but my opthomalogist says it was from the graves disease I had, not the RAI.

I am under the care of a neuro opthamologist for my eyes. They still bulge, BUT, not that bad. I will eventually need surgery for it, but not at the moment. I am using eye drops & eye oniment to keep them moist.