[lhc11]

#1064732

Hi — that’s great that your endo was so thorough and patient. One or more of the facilitators will surely chime in with answers to your post and questions, but in the meantime I just wanted to say that I’m someone who recently chose surgery OVER rai; I am not recommending one over the other, and I was/am lucky because I live where there is access to superb thyroid surgeons–so at least here, thyroid surgery isn’t done just for emergencies any more, though I know that’s still true in many places. Anyway, you can search for my recent posts using my user name if you’re interested in that option at all; I had a very positive experience. Also, I am sort of amazed that your endo said 50% achieve remission on medication. I was told a much, much lower number–something like 20%, and that the remission can end at any time even if one does achieve it. I know some people do prefer to stay on small doses of the medication long term, especially in Europe (thus achieving a euthyroid state, not remission per se), but others are concerned about long-term effects. There are people on this board who have done that, others who have stayed in remission after going off medication, others who have gone with RAI, and others who have chosen surgery–all for excellent reasons. The key is to make the decision that is right for you, with your doctor’s help.

At any rate, many congrats on the good appointment–hopefully the methimazole will kick in very soon and you’ll start to feel much, much better.

lhc11

[snelsen]

#1064733

Hi, it does sound like you had a very thorough appointment. he sounds great. Everything about Grave’s, hyper and hypo, takes way too long for everything. That is what everyone on this board has experienced. It is a waiting game, and we will wait with you. The first thing is for you to get less hyper, that is why you’re on meththimazole. YOu will feel better. When you get to that stage, you can decide on your options. I do disagree with his statement that a thyroidectomy is used only for emergencies. YOu will find that is not the case. I chose surgery, would do it again in a heartbeat,over RAI. There is no "right" answer, a lot has to do with what you want, the options available to you. Depends on where you live, too. I have found that different parts of the country emphasize different philosophies. Sometimes it simply has to do with where they went to school, what was emphasized. But we have choices. There are many current discussions on this board on this subject.

lhc11, who also answered you, chose surgery, she had it just last month. As you can tell from her comments, she is very pleased with her decision. The posts she mentioned will have a lot of conversation about it, including mine.
Now it is important for you to get well, feel less hyper, it is tough on you and your body. I am sure your endo wants to moniter you closely as you begin you treatment. You’ll be hearing for others, plus our wonderful facilitators.
Welcome to the club you don’t want to belong to, but everyone here is in the same club! We help each other.
Shirley

[thompson91]

#1018426

Ok, so I have found out that Endo Offices things move slow. For the waiting patient its a drag but when your the patient and the doc takes almost an hour and 1/2 with you its a good thing. He was very nice and thorough. He let me talk and tell the story leading up to my symptoms. He did a exam very indepth more than the family doc does.

He laid out the options and stated that he has no interests in one vs the other. He stated I have Graves with 2 long words and thyroiditis (hosimotos) I believe he said was the long words. I’m a little confused as to how I can have both. He explained in detail how everything works and even drew a diagram! It was a little overwhelming most I understood. He went off on a couple bunny trails but it all had to do with the thyroid and topic at hand so I didnt care. There was even another doc somewhere that called him for advice on a patient.

In the end he did not push RAI!!! I told him I dont want it. He said at this point that is fine. He said surgery is usally a last resort and for emergencices that RAI if needed in the future is not that bad. Explained that yes stay away from kids for 4 days and can be around adults just arms length away. He said I could do nothing that the thyroid would burn itself out but you risk the chance of the goiter growing, meds, or RAI. I opted for meds. So he said he would do a small dose he believes it will help me to achieve remission. He said 50% achieve that and the others dont. He said he could do a higher doage but thinks he would have to lower me rather quickly. So, he prescriped Methalozone 5 mg 3 times a day. I knew when he said more than once a day that was good. I asked if he doses off of T4 and he said yes cause the TSH will take longer to change than T4 & T3. So I go back in 5 weeks and get a blood test prior. He said if the meds dont work then I should probably consider RAI. I dont even want to think of that but of course did and my hubby told me to just CALM down and not think about it. I know the visit, doctor could have went in that direction to begin with so I’m thankful I have this chance. So besides the Hoshi ques., those of you that did remission I know I asked before but with this med anything I should look out for besides side effects? Advise?? Thanx!!

[cynthia]

#1064734

welcome to the site newbe ha ha I have found it very helpful….have a few questons as usall did you dr. tell ya how quickily you can go from hypo to hyper???? did he tell you how the autoimmune process can attach other parts of the body besides the throid??? I have been on meth for about 4 weeks my labs are improving however because of my extrem leg weaknes and pain my endo took me off and put me on Propylthiouracil also I got the referal to a surgion for throid ectomy which I want ASAP wonder if I can get some feedback on pain level after surgery and any issues to deal with post surgery???? good luck cb

[Bobbi]

#1064735

How can you have both Graves and Hashimoto’s thyroiditis? If that is, indeed, what you were told, your situation is complicated by having two different autoimmune thyroid conditions. One (Graves) causes you to be hyperthyroid. Hashimoto’s causes you to be hypOthyroid. You can have the antibodies for both conditions, and thus be diagnosed with both conditions, but you cannot BE both hyper and hypo at the same time, so typically what happens is that one condition will predominate at one time, but the other can predominate at another. Right now, your blood levels of thyroid hormone are too high, so you are hyperthyroid, and you’ve been put on medication to try to control that condition.

[Harpy]

#1064736

Thompson91
Assume your hormone levels were high as you were prescribed ATD’s.
I don’t know what the protocol is there but here they generally start you of with both ATD’s & Beta blockers, the ATD’s to reduce your thyroids production of the hormones and the beta blockers to reduce the hormone effect on the body until the excess is flushed out of your system and then the Beta blockers are stopped and just the ATD treatment continues.
I can’t comment on the RAI or Surgery as my partner, who is the patient (thread below "Newbie to site – Graves 3.5yrs") has elected to continue treatment with ATD’s and she has recently shown signs of increasing TSH which is the first indication of potential remission, so still going at this stage. She gets full bloods tested regularly to monitor hormone levels and potential side effects of ATD’s Liver failure & Blood Cancer, to date no indications of a problem.
Pros & cons with any of the options do your research and make a decision that you are comfortable with, It’s hard to make an informed decision while you’re body and mind is racing so I would advise you go with the ATD’s for a while to get your levels down and give your self time to think about it how you ultimately want to deal with this disease.

[snelsen]

#1064737

This is to Cynthia. Cynthia, there are a ton of very recent posts on this board relating to having a thyroidectomy. Try putting the words "surgery" or thyroidectomy" in the Search box. Also, lhc11, just had the surgery in June and you can put her name symbol in the search line. Ask around, ask you doc, ask for the name of a general surgeon who does thyroidectomies in your area. Also (I am sorry, I have forgotten the acronym for the site)there is a site the facilitators have mentioned before, to help you in your search, plus I THINK this site may have a similar way to find surgeons who do thyroidectomies. You can learn a lot by reading lch11’s post op experience, and hers is so recent. Mine was a long time ago, it was fine, I had a sore/stiff neck for about a week. Was able to get up and walk around, do things the following day, got really tired, throat was sore when I swallowed, all typical stuff.

[cynthia]

#1064738

have read most posts but most are general thanks for your input what I was looking for …already have apt with surgeon for aug 3rd real excited thaks agin all for the help cb

[thompson91]

#1064739

Thanks for all the replies. I was on beta blockers for a couple days but then stopped cause they made my chest tight. The family doc said to stop them and he knew I would on my own anyway. I dont really have any heart palps on hand tremors. Beta blockers have alot of side effects I’m not into. I’m hoping with the Meth I’ll achieve remission if not then I’d opt for surgery. In the end the same is achieved, Hypo, and RAI has some effects I dont like as well. I know alot have had success with it its just not for me.

The Endo seemed like having the Hoshi antibodies was a good thing. I know about 1 1/2 years ago I felt tired all the time and was depressed due to a loved one passing on. I didnt think anything of it. I feel great now and only have the hand tremors. I’m not sure how I’ll feel with the Meth in me. I dont want to feel worse. I also lost alot of weight on a program I did prior to this and work out alot. I continue to exercise and the Endo said that was fine. Its good for you helps to oxygenate your body. So we’ll see how it goes. Again thanks for all the input.

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