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Thyroid coming out June 27
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!
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.
I suspect that danie's two antibodies are TPOab and TGab as Barb suggested above. I'm positive for both as well.
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.
COMMUNITY LEADER
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.
Bruce,
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.
sass
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.
sass
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
Sassy,
Because you said your dad did and he is doing well.
Barb, I had both graves and has his antibodies but was told that you take the higher number and that's what you have?
Because you said your dad did and he is doing well.
Barb, I had both graves and has his antibodies but was told that you take the higher number and that's what you have?
COMMUNITY LEADER
Thyroid meds do not control the Hashi's antibodies, they only control the hypothyroidism that results from the antibodies destroying the thyroid.
danie -- have you been tested for Graves? Some people have both Graves and Hashimoto's antibodies......
Have you considered bringing your surgery date closer?
danie -- have you been tested for Graves? Some people have both Graves and Hashimoto's antibodies......
Have you considered bringing your surgery date closer?
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.
Sharon,
Why dont you have a TT? have you considered?
Danni,
May i ask how they performed the uptake?
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.
Why dont you have a TT? have you considered?
Danni,
May i ask how they performed the uptake?
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.
Thanks, I know a lot of older people that have been just fine with it forever. Thanks for the inspirational story lol, it's nice to hear them too!
Bruce- I used to have nodules. They disappeared, I now have just a large goiter. I did have an uptake which verified I was hyper.
Bruce- I used to have nodules. They disappeared, I now have just a large goiter. I did have an uptake which verified I was hyper.
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.
SASS
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.
SASS
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.
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).
bruce
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).
bruce
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).
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).
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.
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.
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.
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.
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.
Can you do me a favor and hurry up to get your thyroid removed so i can see if it works?
LOL
LOL
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