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!
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.
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.
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.
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.
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.
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.
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...
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.
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.
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.
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.
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.
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?
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.
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.
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 =).
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!
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.
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.
Here is what I think. I will shut up after i voice my opinion. Again its your body and you know best.
1. You wrote me earlier this month because you said you thought you were going through the same thing that i was going through. You and I had similiar issues. I told you what I did to be able to get my tsh to move on the dial and to finally be able to ingest some thyroid. If you go through my posts over the last year, you will see that for almost a year, I bitched and moaned every single day on this board to the point where no one wanted anything to do with me anymore. Ask any of the members of this board, they will tell you how much i went through during the beginning stages and progression of my disease. I too considered taking the thyroid out. I saw 8 endo's. 8 of them!! One of them was at the mayo, one of them was a harvard doctor. All of them said the same thing to me. Take the thyroid out and you could risk feeling worse not better. I had ONE endo that told me that if I wanted to take the thyroid out, she would do it but she did not recommend it as removal is only recommended for cancer and untreatable graves.
2. Have you ever been in a doctors office and they have the little plastic thryoid and they show you what a normal thyroid looks like and then one that has hashimotos? It is all diseased looking, inflamed, rubbery all over, covered in a nasty mucous film. This is NORMAL for hashimotos. The hashimotos thyroid also has increased blood flow to it as well. This is normal.
3. There are others on this board who have had thier thyroids removed for the very reason that you are having yours removed and they are much much much worse even a year later. If you want an example, i could point you in the right direction.
4. In my own opinion, and the opinion of some of the "elders" on this board, I feel that you are rushing in your decision and that you have not given yourself a chance to either try the proper treatment, or allowed your thyroid to get through the dying stages of the disease. This was the most horrible part for me. Because I would take thryoid and half the day i would feel horrible and then after 4 pm i would feel fantastic.
5. And take this with a grain of salt....... The people on this board are not medical experts, however they are speaking from experiences they have been through. The doctors that are treating you have probably not had hashimotos and have not been through what you are going through. The answer that they are giving you is a quick resolution to your problem. You will have to immediately go on total replacement. If your adrenals and the rest of your endocrine system are not prepared for this, you will suffer worse than you have ever suffered before. You will be bed ridden, you will wish that you didnt have your thyroid out. I trust the judgement of several of the people on this board and one other person in my life who has been through all of this and has guided me through step by step what they have been through to get better. I am now on .75 tirosint and although i still have issues, I am no where near where i was just 3 months ago. I went to seaworld last saturday and went for 10 hours of playing, swimming, walking, laughing, and enjoying and not once did i think about my stupid thyroid disease.
I also urge you to read the article posted in the previous post entitled "a must read for everyone with thyroid disease". Out of everything I have ever read or heard, this one article will summarize everything that you are going through, that I am going through symptoms and treatment.
I wish you the best in your decision, but I personally think you are doing something you probably should hold off on before you do. There is no reversing this. It should be a last last last chance at treatment, not an easy way out.
Good luck for the 27th!! I'm here if you got any questions about the surgery.
I totally understand why you're going ahead with it, I was in sorta the same sitution as you (only difference is I have Graves antibodies) but I swung like crazy (like you), I was unable to take meds for the simple reason they sent me hyper (but yes there was times I was on meds for a while when hypo...never lasted too long though), the hyper spells were awful (untreated hyperthyroidism is awful!!!) and frankly, my thyroid was going up and down too often.
Getting rid of my thyroid was the best thing I ever have done in regard to my health!! I now take thyroid meds daily, they do not negatively affect me like they used to and I believe if I didnt have other issues playing a part (not thyroid related) I'd prbably be stable on the meds and feeling good by now.
But, surgery isn't the end of the thyroid journey, it's only the very beginning. But, it is the beginning! It just takes time!! : )
When I wrote you, I was referring to the symptoms. Do you only have hashimoto's or do you have toxicosis as well? I'm not sure if your test results ever went hyper. My tsh was actually .001 at one time, and I was extremely hyper. I still am hyper according to the thyroid uptake. I haven't gone hypo. From what I understand, it can take a long time to go officially hypo or it can be fast. I have been living with this for over 4 years and severely in the past year. I can't imagine giving it more time than I have. Other parts of my body are now failing because of the constant up and down. I don't feel as if I am jumping the gun. I have seen countless doctors over the past year! I am so glad the treatment you have tried has worked for you. I really wish I was hypo so that I could find a way to take meds. Unfortunately I am not, so taking meds at this point is not even what I need. Thanks for the response. You are one of the lucky ones to find something work for you.
You are one of the others like Hessy who have a very similar diagnosis to myself. I know you both still have your own problems, but both of you have done much better without the constant up and downs. Thank you for your story. It really does help place my mind at ease. The untreated hyperthyroidism is a living nightmare!
Graves is completely different than hashimotos. Graves has to be treated with RAI or removal and control. Hashimotos is treated differently. Graves is producing erratic amounts of hormone. It must be stopped! Hashimotos is not making enough.
I was going through the hashitoxosis period as well. I sped up the "death" and assisted the thyroid by taking the items in which i explained to you via private messaging. It worked for me, its working for another member of this board as well.
I am still having my own private issue that I dont understand, but I can tell you I feel 10x better on the tirosint that when i was on nothing at all.
I found a great article describing hashimoto's toxicosis. This is just one, but almost all of them recommend the same treatment for this as they do for graves. Surgery is actually the recommended method of working with it. There is a difference between normal phases of hashimoto's and hashimoto's toxicosis. Take a look at the article. It is really helpful!
I'm not sure the method you mentioned is completely safe without the direction of a doctor, especially in individuals who might have a different diagnosis. I would love to try natural approaches, but I just don't have the money to be monitored all the time to make sure it wasn't hurting me further. I have a sensitivity to anything I place in my mouth. I have to be really cautious about what I do. A lot of people have had success going gluten free, I did not. We are all so different! Thank you for sharing.
I do agree with Bruce, in that adrenal issues should be addressed prior to taking thyroid med. If you haven't had your adrenals tested, you should do so; however, you are correct, that there are some treatments that can cause more harm than good, if you don't have that specific problem. There are other treatments that should only be tried under the supervision of a doctor.
Your doctor is correct that even after you have the surgery, you will still have antibodies; however, since thyroid antibodies attack ONLY thyroid tissue, they should go into remission, once there is no thyroid tissue to attack.
Bruce is also correct in saying that the people on this forum are not doctors - and NONE of us can tell you what to do; we can only make suggestions, based on our own experience and those of other people on the forum. What works for one, may not work for another. You are right to follow your instincts.
I am concerned about one thing -- in your posts, you only mentioned TSH; is that the only test that has been done, besides the antibody tests to determine the Hashi's? My TSH stays at < 0.01, but my Free T3 and Free T4 are good, so it's not a concern. Decisions such as TT should not be based on TSH, alone.
If you decide to go ahead with the surgery, I wish you all the best; if you need help dealing with the hypo issue afterward, please don't hesitate to let us know.
I realize you are all not doctors and I value all of your opinions =). I am the type of person who likes to see the opinions of others so that I can think about them all.
My adrenals were tested in a 24 hour urine test. My old endo said they were fine. My doctors will not test me for anything further unfortunately.
My free t3 and free t4 edged towards hyper when my tsh was hyper. They edged toward hypo when my tsh was very hypo. I know not to go just by tsh, I was going mainly by my symptoms. When my tsh was .001 I believe I hit a thyroid storm and almost died. Normally my free t3 and free t4 stay pretty normal though. I was reading about hashimoto's toxicosis, and also what I heard from my endo is that I fluctuate at times sometimes even in the same day. I have had test results show my extreme fluctuations. Sometimes they balance each other out though, and sometimes everything appears normal by the time I am tested. The uptake verified this. I took in an excessive amount of iodine as seen in graves patients, even though my tsh wasn't even reflecting that in that particular hour. I am doing the TT because I have lost close to a year in my life. I am 32, and there appears to be no other option for me. I have a 5 year old, and I'd like to be able to be a normal mom, not a sick one =(. I know it won't be easy, but I'm hoping the steady dose of hormone will help the constant up and down I have going on now. I did discuss the block and replace method with the docs, but they said that also is not a good option for me because of the extreme fluctuations, I am actually hypo too. I don't have any doubt I have other issues going on, possibly with the adrenal glands, I just can't afford to get testing on my own. This is the third endo I have seen, and I am out of options unless I pay out of pocket. I am not working because this has made me disabled!! I can barely function at all.
Thank you so much for responding. I really value your opinion and your knowledge. I was sharing/venting/looking for opinions in this post, and I definitely got them! =)
What will happen after the removal? You will become hypo, at some point, and have to start on a thyroid replacement medication, which you will need to take daily, for the rest of your life.
There is a variety of medications available, and like everything else - what works for one, might not work for another. It might be a good idea to research the different types of medications, so you will be able to be pro-active in the decision.
I was on levothyroxine before without a problem (before the hashitoxicosis). I was on this for several years. I might choose something with less fillers though as I have become intolerant to everything. I just don't know how much they plan to start me out on or how soon after the operation. Those are excellent questions to ask.
I do not tan, it is just what I have heard. When you look it up it seems everyone is split. Here is an article from a study that the National Insititue of Health did with another organization:
By the way was the Vit D supplement you took D2 or D3, because D3 is the one the body needs. Also be sure to check the inert ingredients it could be that if there are fillers you could be reacting to the brand's fillers.
yes i feel better, but it's also taken a year and a half of med adjustments changes ups and downs to get it close to right and im still working on it, but not everyone goes through this . some adjust well and 3 months later are good , but not everyone, Kevin
Some people simply do not seem to produce vitamin D...... I spend the majority of work day in the sun, yet, I have to supplement vitamin D. Apparently, my body doesn't produce it. It that's the case with you, a tanning bed will not help.
Also be careful, because there are other problems with using tanning beds. Research carefully.
Kevin- I guess that is all I can expect. I'm sure I have a long, long journey to go, but at least you do feel better. I guess any improvement is good lol. If I can look at the mountain and know there is an end, it will be easier than looking at the mountain that just goes on forever! I will be picking your brain =).
Barb- I would get natural sunlight, but I live in MI and we don't have that here lol. If it were just the sickness I would take the D, but the heart racing I can't handle. I feel like I'm going to have a heart attack after I take it.
I was only thinking of a way to raise D short term before surgery. A little bit anyway. I know there are many risks though. Sigh, why can't anything be easy?
it can go the way it did with me and alot of people posting on here (that's why there are still here) but i remember a few , that were sick the same time i was had the operation and recovered quickly and are well a few months down the line , that's why you never see them on here any more. so it's hard to say, just like everything with the thyroid it will take a few months to rebuild your levels and start to heal yourself, but I'm sure your aware of it, but alot of people heal up, get the right dose fairly quickly maybe one, 2 adjustments and there not sensitive to the med feel good and are fine, and they go on with their lives , so hang in there. Kevin
I read that after thyroid removal you need rai. Then after the rai you will start thyroid. I'm not sure why this happens. Sounds like people need thyroid at at least a smaller level right when the thyroid is out.
I do know that they wait a little bit because you can have an initial dumping of hormones when they remove the thyroid. This could cause a thyroid storm. I had the choice of RAI, or removal. I chose removal. Like I said, unless I have cancer, I will not ever need RAI.
I have to be the guinea pig lol? I have been reading stories of people going on like this for years. Their thyroids never seem to die. In hindsight, my symptoms have always been more hyper than hypo. In fact when it first started I had horrible insomnia, night sweats, and heart palps. I bet my heart rate was faster too, but at the time I never really paid attention to it. I did exercise and have trouble breathing with excessive heat. Through out the years I have had this. They say once you go hypo, your most likely will not have the hyper episode again, but mine has never fit this scenario. I know a girl that had it for 10 years and her thyroid is still not dead (she is finally getting it removed). I have heard success stories with removal though. I don't think it will be easy, the only difference will be that I will not fluctuate back and forth constantly. I have so many issues from this happening. It is ruining my body, all parts of it. I will let you know how it goes though. I can only pray I get some relief. I hope yours settles down too.
Hashimotos peeps have both hypo and hyper. Putting all the kookyness and wizardry to the side that you read about on here quite often, the bottom line is biology.
The antibodies of hashimotos disease have to be supressed. This is done with obviously thyroid replacement and selenium. It also depends where you are in the stages of the disease. Despite this crap starting with me a year ago, i still think im at the middle stages of the disease. You may be right around where I am as well.
If you get your thyroid out, you will have a couple months of hardship and then you may get better. Its a very patient process and trust me i am about out of patience with this crap.
Im very interested to see what happens with you. I hope the best for you.
If my hashimoto's would stay in hypo land most of the time, I wouldn't even consider surgery. Unfortunately, the hyper has been hanging around several years in brief episodes, and severely for the last year. I'm just taking my chances that having my thyroid removed will make me feel better. I know stress plays a major part in this disease. Unfortunately I am ALWAYS stressed. I don't see my antibodies ever going into complete remission. I've spent the last year hyper, and at times hypo, but AT least I know when I remove my thyroid I will be hypo. I will not be hyper again unless the meds are too much. I plan to go very very slow though. I'm not patient enough to let my thyroid die, and at this point it's not even safe to do so. This hyperness is not doing well with my heart. My heart rate should not be 160 at rest. I think it's dangerous to keep this up and something worse could happen! It could take YEARS for my thyroid to really turn hypo and I don't have the time to spare. I have now developed another autoimmune condition (and who knows if I have more). The constant stress of my thyroid is literally causing other diseases to harm my body. I really hope this works. I appreciate your well wishes. I wish you the best too.
Antibodies are not what make a person go hyper or hypo....... antibodies are those nasty little critters that are chomping away at your thyroid, killing it off cell by cell (what a horrible picture --- lol) ...... The thyroid is what makes you hyper and hypo, by either producing too much hormone or not enough......
Thyroid medication does not suppress antibodies...... thyroid medication simply replaces the hormones that the thyroid no longer produces. Antibodies go into remission (don't go away, just become inactive) when there is no "live" thyroid tissue left to chomp on....
I spent about 20 yrs swinging back and forth, between hyper and hypo, before I finally went hypo and have stayed there.........
Thyroid removal is hardly ever done, simply because a person is hypo; it's done because of Graves Disease, cancer, Hashitoxicosis, etc........
20 years, what a nightmare!!! I don't have that kind of dedication lol. If I'm gonna have antibodies, I wish they would chomp it away all together instead of torturing me! In the past I had hashimoto's with short periods of hyper (feelings anyway, my endo at the time never tested me for anything). It wasn't until the last year that I developed the almost constant hashitoxicosis. Thank you so much for the well wishes. I really appreciate all the feedback. It really does help to talk about it!
im glad your feeling better..thats good to know if i have the RAI that i will be better..Dani best luck to you..we all have battles we have to fight..life is full of them..we have to make our choice as to what right for us..and its good to have people helping you to give you advice ..im so glad to have found this site..it helps me so much and gives me hope..thank god for this site..
Yep, I have the rubbery thyroid, although I wouldn't consider 4 years the beginning stages of my disease (unless it started to feel that way years ago). I had a bad endo at the time, so he would have never noticed. Maybe when they take it out they can bounce it around.
This has been a very interesting thread for me as I have wondered the same thing, what would happen if i had my thryoid out and just went on replacement.
Today was the worst day ive ever had since i started this mess a year ago.
SO today I get a call from a friend who is pain doctor at a hospital in Calfornia. He tells me that one of his patients who he was giving a back injection to told him that she had her thyroid removed because of hashimotos and is doing 100% better. Words of encouragement! Now im seriously wondering if this might be good.
My harvard endo told me that they only do them for hashis when the goiter is too painful.
Have you talked to anyone else who has had this done?
I know 3 people as personal friends in real life that have had their thyroids removed due to hashi's. Two of them are old ladies now and have had no problems ever. In fact, they were really surprised about the symptoms people have afterwards. The one lady said her doc made her wait a year trying meds over and over while she still had her thyroid. She bounced around and it couldn't be controlled. She said it was horrible, and at some points she couldn't even lift her legs to walk up the stairs. She said he removed it because there was no controlling it and she has felt great ever since. One girl went to school with me (same age) and lived a few miles from me. She has hashi's and it was causing problems. She did not have nodules (like me) just a big goiter. When her thyroid was removed they found she had cancer on the actual thyroid! That one concerns me the most. She said for 2 weeks she was kind of a zombie and stayed with her mom for help, but after that she was great. She said she leads a normal happy life now without any problems. Actually, I forgot, I know another lady related to my sister's hubby. She also had problems. They removed hers because it was suspicious for cancer (she had cancer in other areas of her body). She felt great for several years (but died later of cancer in other areas). I know a friend of a friend that had her larger goiter removed and she is fine, but she didn't really have problems to start with. I have heard other accounts on here and online of course, but usually people are posting on here because they need help. These are the ones that it didn't go smoothly with (this would be the case for any surgery). I try to keep that in mind because of all the individuals I know personally who are feeling better.
People who are feeling well, rarely seek out forums like this...... I'm sure there are a lot of people who have had successful TT, that we don't hear about. At least you know people who are feeling well, following TT, so it's possible.....
That is the big choice you have to make. My endo would rather have had me choose RAI. I didn't because I have a 5 year old son and I am a single mom. I couldn't really be away from him that long. It just never felt like the right option for me.
When I seen the surgeon he was happy I chose surgery. He said I definitely made the right choice. With the different rates my thyroid takes in iodine it could have been a long and horrible journey of my thyroid dying off. Sometimes it can even be unsuccessful. It takes a lot longer to get on meds and get to the right place. Surgery however has greater risks, if you you look at it differently. It is all up to the individual!
I agree that people satisfied with their treatment do not frequent forums like this. Someone will occasionally post a success story, but that often gets lost in the shuffle pretty fast. Some of us long-timers are successes, too, but we don't exactly tell our story every week! I haven't had a TT, but my neighbor did at about the same time I was diagnosed with Hashi's. They had suspected thyroid cancer in her case, and pathology confirmed that. She's doing wonderfully and never seemed to have a problem adjusting to meds, etc. Good luck with your surgery.
I did okay with my TT; I did not have the hasi though, graves/hyper/toxic goiter.
I did gain weight at first because you go hypo. It took a year to get dosage correct.
It did not alter my life in anyway, still work, mother, wife, sister, friend. The TT was done about 16yrs ago. I do have other health issues, but not one related to thyroid as far as any doctor can tell.
heres what thyroid manager says about removing it with hashis. Not very much on it but still:
Surgery has been used as a method of therapy. This treatment, of course, removes the goiter but usually results in hypothyroidism. We believe that it is not indicated unless significant pain, cosmetic, or pressure symptoms remain after a fair trial of thyroid therapy, and probably steroid therapy, but is appropriate in some cases. Among patients with postpartum thyroid dysfunction, the most common type is destructive thyrotoxicosis and simple symptomatic treatment, using beta-adrenergic--antagonists, is usually sufficient(109). In the case of postpartum hypothyroidism, replacement with a submaximal dose of T3 is useful to relieve symptoms more quickly and to predict spontaneous recovery which is detected by an increase of T4.
Totie- You can live a life, which is more than I can do now! There is hope. Thanks for sharing.
Bruce- I am on a beta blocker, and though it does help, I still cannot live a life and I still bounce between hypo and hyper. All a beta blocker does is slow down the heart for when it races. It doesn't stop the thyroid from misbehaving (at least not in my case).
I did the beta blocker thing. It just made me very tired. It may be contributing to your fatigue. WHat are you taking and how many MG?
you know there are other things you can take that may help you without having to take that route>? you probably have palpatations because of the hypothyroidism. When i got on HC (cortisol) the palps left immediately. I got off the HC and they came back, but then i got on thyroid and they went away. Seems like the only time i get them is in the morning. i take the thyroid and they go away, but of course i have other misery that comes on (as you described above).
Fatigue is not my problem! If anything I don't have enough fatigue. Heart racing and shortness of breath are my worst symptoms. I only take 12.5 mg of atenolol a day. I have only been hypo one time in the last year! I tend to get palps when I am hyper. I now mainly get them once a month, when everything is horrible. If I am hyper, I get them all the time. My case is a little different than yours in that I am not hypo any longer. I swing borderline hypo every now and then, but after my tsh shot up to 26, it went down to normal, and now hits me with spurts of hyper. I do have hypo symptoms as well though. If I was more hypo like you, I could definitely be on thyroid meds as I used to be. Unfortunately, I am not in the same boat you are. You are truly hypo, and I no longer am.
Okay, I have to post now! My father had a TT many, many years ago. He is now 85 years old and does not have a computer, so I will speak for him.
It is amazing the difference between he and I. I have hypothyrodism and Hashimoto's. since his TT, he is only on Synthroid. It never changes. As long as he does not switch up the time he takes it and only takes it with black coffee and does not eat for 1 hour, His levels santaya constant normal range! All of his thyroid labs..(FT3, FT4) are always right on target. And he feels great now. No Swings, No Hyper. Nice BP and HR.
I am more than half his age, and he does better thyroid wise then me any day.
He says he is thrilled with his TT. Has no regrets. He has had no problems whatsoever.
Danie, If this is what your surgeon is recommending, and this is what you are happy with, then I say go for it. It is safer for you and your son than the RAI.
I have never done this. I am going to request this maybe on thursday. I dont care anymore. I feel so horrible on or off synthroid. Swingin back and forth all day long. Back and forth, back and forth. Ears ringing and buzzing, burning off the hook one minute, An hour later exhausted and cold.
I know the feeling! Unfortunately, some cases of hashi's cannot be controlled with meds not matter what they do. With the uptake they just give you some radioactive iodine (I had to drink it in a straw) and get an injection. They then take a bunch of pics immediately, and when you come back in 24 hours when they will take pics again to see how your thyroid took in the iodine. I am SUPER sensitive to everything and I didn't have any effects from it. The percentage of iodine my thyroid took in was similar to those with graves disease.
I didn't have the graves antibodies at the time of testing, but I'm not so sure of the results. My hashi's antibodies were gone at the time too when a few weeks prior they were close to 300. I'm not sure how that changed so drastically in 2 weeks, or if I really could have graves antibodies or not. I know I tested positive for 2 different types of antibodies (the docs assistant threw this out in passing, so I don't know the details of that one yet). Surgery is a month away now. With my new mouth issues it is probably best I wait. They might want to get this under control. I'm waiting on biopsy results =(. It could be ANOTHER autoimmune disease attacking my tongue and mouth
My Father had Thyroid Cancer. That was the reason for his TT. I do not. I only have multi-nodular thyroid, Hypothyroid, and Hashi's, as far as my thryoid goes. I will be tested for parathyroid in July. . My endo has never considered or mentioned a TT for me. Why would he?
I am on .112 synthyroid as of now. Conversion will be checked in July also.
There are 2 antibodies that are used to diagnose Hashi's........ those are TPOab and TGab; some have only TPOab, some have only TGab, some have both, but either or both, will bring a dx of Hashi's. To confirm Graves, you would need to have a TSI test done.
and if this test shows positive for antibodies over the normal level, this means you have graves? Not to sound like a moron, but i was told by idiot doctor # 16 that i had the graves antibodies but my hashimotos antibodies were a little higher so the graves didnt count. This could explain a lot. If this is the case, will dannie and i be sharing a hospital room together.
Yes, TSI is the definitive test for Graves'. Sorry, doctor #16, this isn't a competition, you can have both! You must have had a TSI with all your testing, Bruce. Don't get too excited, having both Hashi's and Graves' is VERY rare.
I suspect that danie's two antibodies are TPOab and TGab as Barb suggested above. I'm positive for both as well.
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