[Ski]

#1072688

I can’t stay long, but YOU ARE RIGHT. If your doctor drops you, FINE. Remember, you (or your insurance company) pay his salary. You can stop paying that salary if you disagree. Don’t be bullied.

[lin]

#1019586

I am 49 now and was diagnosed with Graves about 8 years ago. I took methimazole for about 5 years, and was stable on a low dose (5mg) plus 88 mcg Synthroid as the 5mg of methimazole made me hypothyroid. My endocrinologist decided then to take me off and hope for remission. I was fine for 15 months, but tremors returned and my latest blood work now shows the Graves is back. My doctor refuses to put me back on methimazole, claiming too much risk to my immune system. He recommends RAI, or surgery if I prefer. He says he will drop me as a patient if I refuse the RAI/surgery and insist on methimazole.
From what I understand, all 3 options carry some risk. I prefer staying on low-dose methimazole as I feel there is always hope of remission or of my thyroid just burning itself out (as many women my age seem to go hypothyroid). Plus, there is a lot of cancer in my family and only a finite amount of radiation one can take in one’s life so I don’t want to take any if there is another option. Also, surgery carries risk to the vocal cords and parathyroids, and methimazole is the only option that does not likely make me hypothyroid and in need of Synthroid my entire life, with the side effects that may accompany that. And, from what I read, side-effect risk is very low with low-dose methimazole.
So, I’m wondering if anyone out there has experience with taking long-term methimazole? My doctor is pushing me hard for RAI/surgery, and trying to find a new, good endocrinologist is proving difficult. I’m hoping for some information to back up my position that long-term methimazole is no more dangerous than the other 2 options.
Can anyone please help me? I need to learn from the experience of others!

[James]

#1072689

First of all I would be compelled to question the doctor as to what specific medical basis he draws from when coming to the conclusion, “ATD’s are too hard on your immune system”. Did he requisition blood tests for WBC and liver function, and if so what were the results of those tests? It his answer is “just because”, that isn’t good enough. If you are adamant about continuing your regimen of ATD therapy and can maintain a euthyroid state at low doses; AND there is no medically compelling reason to preclude you from doing that, you will need to find a doctor that will support you in that decision. It appears that the Dr. had you on some form of Block and Replace or Modified Block and Replace therapy. There are different theories as to the effectiveness of this treatment regimen. I personally believe that it is neither more or less effective than just taking small doses of ATD, and I’m not sure if there are any studies out there that can back that up.

If 5mg of Methimazole is “just enough” when combined with Synthroid, why not simply ask your doctor to remove the Synthroid and go on a lower dose of ATD? I was on as low as 15mg/WEEK to keep my levels in check.

Wishing you the best in finding a Doctor that is willing to work with your decision and best interest at heart.

James

[DianneW]

#1072690

Lin,

A 2005 study was published in the European Journal of Endocrinology entitled "Effect of long-term continuous methimazole treatment of hyperthyroidism: comparison with radioiodine. It compared ten years of methimazole treatment of a group of patients who didn’t have a remission the first time with a group of radioactive iodine-treated patients. It concluded that long-term treatment with methimazole is safe and that the complications and cost of both groups are comparable.

If telling your doctor about this study or showing him the study doesn’t convince him, I agree with Ski and James that you can try to find a doctor who understands that he is working for you, and who will help you treat this disease the way you are most comfortable.

Please let us know how this goes for you.

[mamabear]

#1072691

YOU are right!!! Go to the office sign the paperwork that you need to to get a copy of your ENTIRE medical records (make sure they understand you want everything including his notes, not just blood work). Then ask them how long it will take for you to receive the records or if you have to go into the office to pick them up. If they say you have to pay for it unless you have them transferred to another dr. …DO yourself a favor and pay for them. Then you always have it and don’t have to worry about yet another dr. holding that over your head. THEY CAN NOT refuse you to have a copy of your medical records EVER! But they can make you pay for them.

Ask the dr. again what the reason is for dropping you and tell him straight out that you want to make sure you are positive in his reasons, so when someone asks aks you why you no longer go to him you don’t misquote him and that you will be making it very clear to every single person you know and every dr. you know.

He has no right to tell you what you MUST do, unless you are in danger and being irrational about things he can not make you do anything, heck even if you were irrational he can’t make you do anything. He has every right to refuse treating you as does any dr. who feels you are making a wrong decision. But that is also considered being bullied and that is just nonsense.

I had an Endocrinologist say to me when my TSH was going low again, that he wouldn’t treat me with PTU(a known drug that I knew I did well on) because he said "you are 33 years old you have 4 kids already so why would you have another since I was too old?" I was peeved to say the least. He said that if he did treat me which he didn’t want to because he said that although my TSH was low it was still within normal range that if he did treat me he would only treat with Tapazole. I told him to take the Tapazole (which is not a drug of choice for a woman who wants to have another baby and not on birthcontrol) and shove it up his GLass . I sought out another dr. asap I never even asked for my records becasue I was the one who gave him all of them from the past and I always kept copies of my numbers(I have an excel spreadsheet from 1992-present).
My new dr. laughed at the thought of him being told to kiss someones GLass ” title=”Wink” /> and said I did the right thing. Naturally I told her what was going on and she was fine with PTU since we didn’t know if I was going to try for another baby. I was only on the PTU for a short time and then went off it again and I am almost 2 yrs in remission this time.

Your best advocate is YOU and you decide when it’s time to change your course of action. Kudos to you!!!

Note: I am all about kicking Graves’ Disease’s Butt and everyone here is supportive and has a lot of knowledge so you have come to the right place. ” title=”Very Happy” />

[lin]

#1072692

Thank you all so very much for your time and advice. I was a nervous wreck over all of this, but your words have helped make me feel more confident!

I have an appointment with my current doctor on Wednesday. I am hoping that, if he drops me, he will at least put me back on methimazole to stabilize me until I can see another doctor. It takes a LONG time to get into a good endocrinologist around here. The one I just called has a YEAR wait!!!

If there is anyone out there who has been on ATDs for long-term, PLEASE tell me for how long and how things went for you. Since I was on them for 5 years + before, I don’t know anyone who has been on them for longer than I have, and I would really like to hear about it if someone has.

Thanks So much again.

[belldandy112]

#1072693

Lin,

My endo is also pushing for this procedure. I flat-out told him N-O, No.

I have not met or known a single person who has had good success with this treatment. When I was making a plane ticket reservation, by happenstance, I ended up talking to a woman who had radioactive treatment done — she told me that she was one step away from filing for disability. Synthroid DOES NOT WORK FOR EVERYONE. A friend who has hypothyroidism had to go to a more costly medication because Synthroid didn’t work for her either.

I have, however, known several people who remain on low doses of M. for their entire lives with little to no problems. There are a couple of ladies in my church who weren’t even advised to have this procedure.

When my father went in after his heart stint (sp?), he was conned into open-heart surgery that would purportedly prolong his life — instead, it put him in a wheelchair, because he stroked on the table. RULE: Doctors will push the most expensive procedure possible, because that’s where they make their money. Keeping us on drug therapy doesn’t line their pockets the same way as a major surgery or radioactive treatment would.

I go by the addage, "If it ain’t broke, don’t fix it." People with Graves were treated with medication for the duration of their lives a long time before radioactive treatment was a glimmer in anyone’s eye. If it still works for most people, that’s what I am sticking with, too.

Regards,

Melissa
(Austin, TX)

P.S. By the way, I am new here — glad to meet everyone! ” title=”Smile” />

[mamabear]

#1072694

Just pointing out again that if the dr. says he refuses to treat you just ask him "may I have the reason why you wont treat me while I am trying to look for another Endo?" I ask you this because "I want to make sure that if I wind up in the ER for any reason due to Graves’ that I don’t misquote you on you anything". Yes I would ask this myself and yes I am a very nasty person when it comes to dr’s who think they can bully anyone into doing something they don’t want to do and then not give the proper meds for when they have to wait on another appt., DO NOT feel embarrassed that you will ask him these questions. AND if he dares to tell you some gibberish about big words and how he feels that this is the best course of action and he wont tolerate you being non compliant tell him that HE is the one who gets paid to do his job and if he insists on making his patients become hypo so he can just sit back and collect a ton of money because you have to be in there all the time adjusting your meds he is sadly mistaken.

Yes I have a big mouth and I am a very good advocate for myself. I have surrounded myself, dh and my children with Dr’s who will only do what I ask but also are tough enough to give me a good fight when I am really wrong. They talk to me like I am their equal and that is all I ever ask of them. Be careful with a dr saying that he would do the same for his child or wife/husband as they are telling you to do, because again they are looking at the whole picture here. You being hypo is better in the long run for them and of course their family would do as he/she says since that is what they would believe from him as well. (I am speaking of Endocrinologist’s only about this part other dr’s do tend to say such things as I would do it the same for my child and actually mean it and are trusted on it). Of course this is my opinion only.

[Ski]

#1072695

Well, just to inject a quick note ~ RAI has proven successful for many thousands of patients. Some people have a really hard time managing their levels on ATDs, choose either RAI or surgery, and go on to live a healthy life (I am one of them).

Not to say that I don’t support long-term ATD use ~ many here have used it, and swear by it ~ but I don’t want you to think that RAI and surgery are "failures" as treatment. They are not. If anything, we suffer from doctors who think that any thyroid hormone level in the normal range is "normal," and we should just shut up because we are well. Finding OUR normal point is extremely important, when using hormone replacement following removal of the thyroid.

As for reactions to a particular thyroid hormone replacement, some patients are allergic to the fillers in the pill that bind it together, so changing brands helps. There is also a brand with NO fillers or dyes, for patients who have an extremely hard time finding something.

[James]

#1072696

lin wrote:If there is anyone out there who has been on ATDs for long-term, PLEASE tell me for how long and how things went for you. Since I was on them for 5 years + before, I don’t know anyone who has been on them for longer than I have, and I would really like to hear about it if someone has.

Thanks So much again.

Hi Lin,

In a total of 15 years, I had been on and off of ATD’s for the first 10, having had several remissions and relapses in the course of that time period. One of my mistakes was pulling off of the meds too early, rather than staying on smaller doses over the course of a longer period of time. The last 3-5 years of the 10, I was on very small doses (as low as 15mg/WEEK almost at placebo levels, but it was worthwhile). I don’t know if it was the supposed immunosuppressive properties of ATD or just staying euthyroid for an extended period of time that helped facilitate and sustain a long term remission, it is hard to know for sure. My experience was that each relapse was shorter in duration and each subsequent remission was longer lasting. I’m convinced that some positive lifestyle changes had something to do with that . . . but I digress. Presently I’m off of ATD for over 5 years now with ideal thyroid levels. Each individual circumstance can be quite different though.

I have corresponded with MANY people over the years who are 5 plus years on ATD’s; in fact one woman that I know has been on ATD over 30 years! In the end it is a very personal decision that has to be done in conjunction with a supportive doctor. You can’t really do it any other way.

Best to you!

James

[belldandy112]

#1072697

James — what a great story! My first bout with Graves was the worst. The second was almost negligible. I go for long periods of time (around two years) without going hot.

I’d like to add … if you really want to know if radiation treatment is your best option? Tell your health care provider that your insurance doesn’t cover pre-existing conditions and that there is no way you can afford to get the radioactive treatment, that not being covered under your plan. I was in those circumstances. All of a sudden, the story changed: "Graves is easily treated with low doses of medication, very little risk, blah, blah, blah … this is the route I’d recommend."

That should tell you all you need to know right there.

Melissa
Austin, TX

[DianneW]

#1072698

Wow, Melissa–did the same doctor really tell you that after recommending RAI as the safest treatment?

[belldandy112]

#1072699

Yup. Same doctor told me a different story.

I have friends in the medical field. The way their practices are run is that they get salaries; they also get a certain percentage of anything billed over a certain amount per month. My friend (a cardio specialist) is encouraged to go for the most expensive treatment option, such as surgery, radiation, etc. He was told my his partners that keeping patients on medication doesn’t bring in enough money. Billing the insurance companies for the most expensive procedures that they will pay for, however, is.

On a personal note, I also have temporal focal epilepsy. It is completely manageable with very low doses of Phenobarbital. I might have one "trance" every three or four years. And yet most of the neuros that I went to pushed me to have brain surgery. I’m not joking. Their reasoning was that years of medication use could cause kidney failure … well, yes, in a very, very small percentage of patients. I finally found an ethical neuro who told me that the other neuros were using scare tactics to get me to consent to a pricey procedure so that they could collect on the insurance $$$, and that the risk of brain surgery was far greater. I’m so glad that I didn’t consent to that — heaven knows what I might have turned into.

The most expensive treatment is sometimes recommended for other reasons that you might think. Doctors and clinics have to make money, too, and they will sell the most expensive "product" they can.

[DianneW]

#1072700

I’m sure that some doctors would "operate" that way (pun intended).

As much as I refuse to bow to the notion of doctor as god, I still hope to believe that a good share of them are there with good motivations, wanting to help their patients, and making recommendations that they believe are best for their patients. This will probably be as with anything else in life: you can find all kinds. But at the end of the day, they all have to look at themselves in the mirror.

At least, I hope that there are more good doctors than bad ones.

[CMoore416]

#1072701

Ive been on PTU for 3.5 years. Started at high dose and now have maintained normal levels on 100mg a day for well over 1.5 years. It works for me. My endo left and the new one pushes RAI. I wont go back. My current GP thinks the same – if its working – why change. I worry sometimes about the long term effects of ATD’s but I am feeling better and maybe would hope to be in remission too one day.

[Author]

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