[ewmb]

#1070829

Hi,
I’m not sure what TS is ( thyroid storm?) but I think I can see what you’re talking about. When I first found out I was hyperthyroid I wanted RAI. The endo talked me out of it and I went on methimazole. I had been on PTU with my GP before I saw the endo. About 4.5 months into it I was very hypothyroid from the medicine so they dropped my dose. When I was still feeling bad about another 4.5 months later the endo said I think you can have your RAI now. I went for the scan and it was uptake over 70%, and the ultrasound showed classic Grave’s pattern. BUT my tsh was too normal for the nuclear medicine person to give me the RAI. We went round and round about it….. is it my choice etc. with him making some strange statements about not killing my thyroid when it wasn’t necessary etc.. Bad to be on a pill for the rest of your life- he of course wasn’t living my life with Graves! My father has Graves and had it no questions asked. That was more than 10 years ago. So…….. after a visit back to my endo I decided to stay off the meds to see if I really was in remission. It took me almost 10 months of getting worse and worse and for my tsh to fall low enough for the endo to send me back to nuclear medicine. They still didn’t really believe that I was sick enough!!!!! I wondered if they were going to ask me to sign a waiver so that they wouldn’t be held responsible for the death of my thyroid. Anyway I got it this time and am coming around nicely after three weeks.

I think that the pendulum has swung in the opposite direction for some of us who really do make the choice for RAI. I did my reading and research and was an informed patient but some of them acted like I was doing something really evil.

It’s my opinion that the lab tests are the only thing that they are looking at at some point. I have a friend, who is a pharmacist and teaches new pharmacists and he has a saying" TREAT THE PATIENT AND NOT THE LAB RESULTS"

I hope that you are able to get the treatment that you have chosen. I would ask your endocrinologist to stick up for you if this is what you really want to do. I wish I had been more forceful two years ago. You and others know how awful it is to go through the ups and downs of this disease. I think the doctor’s are somewhat scared of malpractice in some cases. Also the nuclear medicine doctor thought he was an endo when of course he’s not. Wish they would communicate more.

Good luck and let me know what happens.

ewmb

[hyperm]

#1070830

Hi,

I too have had a TS and afterwards I made the decision to have the op after much persuasion. My endo said that as I wanted more children then RAI wasn’t for me. Also because of the TS and the chance of it happening again post partum because I want more kids then a full thyroidectomy is my only option. Yet many people on here have had RAI and went onto have more children. I am not sure if he didn’t think it was an option because of my m/c’s.

Has your endo mentioned the possibility of another TS? Would you ot consider having the operation? I know personally, that I couldn’t face the possibility of another TS – it has been too traumatic and the recovery has been too slow. ” title=”Sad” /> I go for my pre-assessment on Fri for the op!

I hope you find the right treatment option.

M x

[enough3]

#1019318

Okay..I have had two TS. My first one which led me to my DX of GD. Then, my 2nd one in Feb.09′ (went to TS while on a low dose of PTU).

My Endo raised my dose of PTU. My tsh in April was 0.01. Last week I met with my Endo and did labs and my TSH was 1.17 and t4 was 5.0. My Endo reduced my PTU to 100mg. He said that he did not want to radiate my thyroid.

Why would he not want to radiate my thyroid when I obviously could not get into remission with a low dose of PTU. I know must on this board would say that’s great…but I just got to a point of acceptance about the RAI….why do you think the Endo does not want to do this now? Do I still have hope of remission? I do not want to go through another TS again…I would rather be on Synthroid…

Is there something I’m missing here? I should have asked…but did not hit me until after I left the office.

[James]

#1070831

I certainly understand your frustration. Once you have confidently settled on a certain treatment option, and you feel you are informed enough and confident enough that that choice is right for you, yet you feel you are being steered away from a decision you are most comfortable with, by a Dr. you trust. This scenario often happens for those of us not wanting to pursue RAI, but rather being encouraged by the Dr. we trust, to pursue Thyroid ablation. The choice is ultimately yours . . . that is the bottom line.

As for your other comment about not achieving remission so far on a low dose of ATD. I’m curious to know as to how long it has been since your initial diagnosis, and how long have you been on PTU? It can take years on ATD before achieving a remission; and sometimes it may never happen. Sometimes a remission happens sporadically, but the Graves’ symptoms return later. Sometimes people can maintain low doses of ATD for decades without any problems at all. Sometimes people go years on ATD and suddenly attain a long term remission for no known reason. All of these scenarios are possible. It depends on how much resolve that you have to accept what might happen; what could happen, and pretty much the bottom line is how determined you are to keep your thyroid. In your case, it sounds as if you are resolved to RAI, and so when you return to that endo, make sure you ask the many “why’s” you have brought up here. As a patient you certainly deserve your questions answered to your satisfaction. It sometimes takes a second visit to get your questions in order and ask those important questions.

Glad to see you are taking your health seriously enough to ask questions. I think most Dr.’s respect patients and often go the extra mile for patients who want to be actively involved in their treatment.

All the best,

James

[mamabear]

#1070832

Oh enough I am so sorry that you are disapointed about this.

I think your dr. might be fighting for you right now though. I think it depends on how long you were on PTU and if it doesn’t work then he would try a higher dose. Not really sure what to make of this but……

(((((((((((((((((((((((((HUGE HUGS TO YOU!))))))))))))))))))))))))))))))))

[ely2009]

#1070833

Another "down" in the ups and downs of GD. I too have had doc troubles and it’s SO important to educate yourself and then be a part of the decisions. Sounds like you’re trying to… ” title=”Smile” /> I totally understand that they have the knowledge, training, experience, etc. but it’s not their body. If nothing else, things should be EXPLAINED to your satisfaction so you go away understanding his point of view.

I’m not at the point that I need to make a decision like yours, but I know it’s not a decision that any of you take lightly. So I can imagine how frustrating it must be for you right now.

Hang in there and keep educating yourself.

I’ll say a prayer for your situation.
Emily

[enough3]

#1070834

Thanks everyone for responding to my post.

My endo wants me to come back in 3 1/2 weeks for more labs. So, I do feel "safe" right now (especially with my labs being all in range)

I think I get "shy" when I go to the endo’s office. I have all these questions in my head…then…out they go:(
I’m going to write a list of questions that I have and hold it in my hand my next visit.

James-I was dx in august of 07′. On 450mg of PTU at first..then slowly decreased all the way down to 50mg. This past Feb., I had another TS on the 50mg. I was on ATD’s for a total of 18 months straight..So, my T4 levels were not as high as the first TS. My endo put me on 200mg of PTU…and now here I am at 100mg. From what I read…if this happens…then your chances of remission are slim. I guess that’s why I got to the point of acceptance about RAI.

[ely2009]

#1070835

I’m definitely a list person. i take one to every appt. It’s really helpful to keep you on track. Prioritize your questions if possible. that way if your doc is impatient, at least the important ones are asked first.

Emily

[Ski]

#1070836

A list of your questions is a GREAT idea ~ I’m not sure if it’s shyness, or a weird kind of stage fright, but I think it’s pretty common with all of us. We could go on and on in front of friends, question after question, but put me in that room, looking at all their little pamphlets and junk (and waiting and waiting and waiting) and when we see the doctor, we forget everything except what THEY lead us to ask or say.

As said many times before here, the ultimate choice is YOURS. You are living this, and you have come to a decision about what you want to do next. Your doctor needs to respect that. Discussion is fine, your doctor’s opinions are something to be considered, but that’s all, unless the doctor believes that your choice will lead to harm. This is all tough enough, without having to battle your own doctor to follow up with your choice.

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