[Anonymous]

#1020106

Hi all, been a long time since I’ve been on here. Finally stabilized after having RAI (which destroyed my thyroid completely), then swinging severely hypO and now finally starting to feel “normal” again.

Lately my daughter, who is 19 years of age and at college, was feeling extremely tired but having heart palpitations, irritable, etc (all classic symptoms we had). I told her to go to our family doctor who was the only one who diagnosed me correctly after visiting 10 + doctors. She just got her blood work back and is showing signs of going hyper (great amount of weight loss as she was always thin but dang now she is really thin, hair loss etc) and showing the antibodies of having Graves (yes there is a brand new EXPENSIVE blood test – even with insurance I about wet myself from the price that will tell you if you have the antibodies for developing Graves’).

Ok, now my question. I am still satisfied with my decision to have RAI. I DO NOT want her going through that at age 19 when she is healthy otherwise. Does anyone know any risks of being on ATDs at a young age for a long period of time? I just think giving her young thyroid RAI would damage it and she is way too young to be on synthetic meds the rest of her life. Like I said, I am NOT against RAI as I had it and it was right for me, but she is so young.

Kim

[Anonymous]

#1076012

Hello and good to hear from you again. Too bad you could not make it to the conference this past weekend. This topic was discussed at length with at least three doctors and the patients in attendance.

The RAI did what it was designed to do for you and to kill off your thyroid. That is the expected end result of RAI, then we go on replacement hormone.

It is safe for your daughter’s age. Other options are surgery or antithyroid drugs. Long term ATD (antithyroid drugs) are not recommended due to long term use, increases in side effects. All the doctors at our conference talked about patients in your daughter’s age group and they recommended RAI or surgery.

We are only a click away.

Jake George
On-line Facilitator

[Anonymous]

#1076013

Thanks Jake for responding. I wished I could have attended but money was alittle short and I’m already saving for next year. I am really shocked they recommended RAI and surgery for her age group over ATDs considering she is within child-bearing years from now on. As for RAI, I was told they would try to give me an amount to hopefully not destroy my thyroid but kill off some of it. Guess that makes sense they just destroy the thing.

Well, next year I guess it will be my daughter AND me that attends.

Thanks
Kim

[Anonymous]

#1076014

Kim, I’m sorry to hear your daughter also has Graves’. I’m sure she has many questions about the treatment options. The decision of which treatment to take is a very personal one, and I wish you and your daughter had been able to attend the conference this past weekend. The speakers all gave some excellent information that I think was of use for those attendees who were having trouble making those decisions.

Your desire to have your daughter start with antithyroid drug treatment rather than RAI is a choice that many endocrinologists would agree with, since there’s about a 30% chance that she will have a long-term remission.

It’s premature at this point to talk about a need to put her on antithyroid drugs long-term, as she might not need any other treatment at all if she goes into remission. (About 50% of patients achieve remission, 30% are long-term, and perhaps 15-20% are permanent remissions.)

Many doctors discourage long-term antithyroid drug use when the patient fails to sustain a remission while using them and at this point they urge the patient toward RAI or surgery.

The reasons they give for this is that side effects from the drugs can occur at any time, even after many years of use. None of the doctors at the conference who spoke about ATD side effects said that the chances of side effects increased after years of use; they only were concerned about side effects in general.

While the side effects are relatively rare, what I see is that they are comparing this to the side effects of RAI, and there are virtually no side effects to see. So when they see a patient (however infrequently) with life-threatening liver disease or elevated white blood cell count, or some of the other problems that do occur on ATD’s, this is something they in all honesty want to protect their patients from, even though it will never happen to most of them. They probably all see an occasional death, and I’m sure it sticks in their mind. They don’t want it to be YOU.

Dr. David Cooper wrote in his 2005 New England Journal of Medicine review article of antithyroid drugs,

[Anonymous]

#1076015

My post also was truncated, so this is continued from the previous post: (It doesn’t seem like there used to be a length limit!)

As I was saying:

Dr. David Cooper wrote in his 2005 New England Journal of Medicine review article of antithyroid drugs, ” Some patients opt for long-term antithyroid drug treatment (i.e., years or even decades),and there is no theoretical reason why a patient whose disease is well controlled with a small dose of antithyroid drug could not continue antithyroid drug therapy indefinitely. 64. Slingerland DW, Burrows BA. Longterm antithyroid treatment in hyperthyroidism.JAMA 1979;242:2408-10.

So if your daughter should decide that antithyroid drugs are the treatment she prefers AND she finds in time that a sustained remission isn’t possible for her, long-term antithyroid drug treatment is an option that some people do choose and have success with in maintaining normal thyroid levels even when remission is no longer the expected outcome.

Many of us with Graves’ Disease have antibodies that will eventually cause us to become hypothyroid even without surgery or radioactive iodine, and this is the main reason one of our speakers said he has no problem recommending a permanent treatment such as radioactive iodine or surgery to patients at the outset. Our final speaker said she preferred to start patients on antithyroid drugs so that they would be healthy physically and emotionally when making a more permanent treatment decision.

We were fortunate to watch a video by a prominent researcher from UCLA who gave us reason to hope that there will soon be a treatment for the underlying autoimmunity, so that perhaps it won’t be necessary to destroy patient’s thyroid glands to treat Graves’ Disease. For that reason I’d be inclined to treat conservatively if I had my thyroid still today, if that could be done safely. It sounds like exciting work is being done and I think we can look forward to better treatments in the near future.

The conference was wonderful, and I came home happy and hopeful both for the future of people with GD and for the future of the NGDF. I was so glad to have had the opportunity to meet the new people from here and to spend time with (I won’t say “old”) regular friends.

Dianne W
Online Facilitator

[Anonymous]

#1076016

Kim, a couple of more comments about your post:

First, about giving a dose of RAI that attempts to “slow down” the thyroid but not destroy it: This is a concept that has been popular in the past, that using a low dose of RAI would leave the patient with enough thyroid function that s/he would no longer be hyperthyroid but would have enough thyroid left to avoid hypothyroidism. The trouble with this is that they’ve found that it’s very difficult to find a dose that will do this. Either the dose is too small and the patient needs a re-treatment, or it’s too large and the patient becomes hypothyroid anyway. There doesn’t seem to be a predictable way to calculate the ideal dose in any one person, so when it happens, it’s a fluke. Even when it DOES heppen, it lasts only for a few years and the patient becomes hypothyroid eventually, so these days more doctors are using a bit larger dose, knowing that hypothyroidism is expected, but that there will be fewer treatment failures.

You also said that you thought antithyroid drugs would be preferred over RAI or surgery for someone in childbearing years. That might not be so, for reasons I’ll explain.

If a woman has a remission from taking antithyroid drugs and then become pregnant, there’s about a 75% chance she will have a relapse of her Graves’ Disease after the baby is born. While it is possible to breast feed a baby while taking antithyroid drugs, this is an issue one should talk about with all her involved doctors to get the most up-to-date information and advice possible.

Once a woman is pregnant it’s not possible to have RAI, as it would destroy the baby’s thyroid as well as the mother’s. Having surgery (which requires anesthesia) isn’t always recommended for pregnant women, so if either of these choices are going to be made, they need to be made BEFORE the pregnancy occurs.

Stable, normal thyroid levels in the mother are important for the healthy, normal development of the baby in the uterus. The treatment that can help achieve THIS will probably be the most helpful for someone in their childbearing years to be a good parent with healthy offspring. In my opinion, finding a doctor one relates to well and who will work with you well is even more important than which treatment one chooses.

Dianne W

[Anonymous]

#1076017

Thank you Dianne for your input. I’ve forwarded this website to my daughter as she is 19 so she can ask her own questions and speak her own concerns. I sometimes I love to treat her like my little girl still and I’m sure that will irritate her to the ends of earth and back.

As for me choosing RAI, I didn’t have an option as I had heart palpitations for 15+_ years and my heart was somewhat damaged for lack of being diagnosed all those years. My endo said the ATDs would take too long to “kick in” and highly recommend I choose RAI (but did stress it was MY decision anyways). I had RAI in March and was severely hypO by May 3rd (exactly 2 months after RAI). I was almost to the point where I could not move and if I didn, it hurt/ached. I was sleeping literally all the time. But now, months later, I am on Synthroid, I am finally starting to feel “normal” (whatever the heck normal is in this day and age). I still go to my endo for blood work every 6 weeks as he likes to slowly increase my Synthroid and take precautions. This one in a couple weeks I thought would be my last one but now I’m starting to feel tired again. I’ve learned patience through this whole ordeal and learned to “take it easy”. I do look forward to hopefully attending next year’s conference.

Hugs
Kim

[Anonymous]

#1076018

I know I am getting into this conversation alittle late and unfortunately I was unable to attend the conference HOWEVER…my son is 9yr old and has been on medications since he was 2yr old for Graves and I have done extensive research on the medications, side effects and such since this is the main treatment option for children. Presently,he has been on PTU and snythryoid since he was 2yr old and will need to be on these medications for many years until his body is able to handle RAI…maybe teenage or older. First, there is a very small percentage of people that have any side effects from the medications, second the side effects DO NOT get worse over time, there is NO LONG TERM effects on the liver or any other organ by taking the ATDs, basically it hits you or not but it can do that at any time. And Third, normally if you have a reaction it is normally within the first few weeks of taking the drugs and you will not see any changes for several weeks with medications since that is how long it takes for them to start working. Treating Graves with medications soley is the main course of action in Europe and other countries outside the US. The best thing to do is talk your options out with your Endocrinologist and make sure it right for you. Thanks and good luck…mm fr VA…

[Anonymous]

#1076019

Kim, you must have been really sick when you were diagnosed. I’m glad you’re doing better, and it appears that you have the “patience” factor mastered.

I never did manage to do that. I think because reading the thyroid books and listening to the doctor’s version of the process of taking the RAI pill and then starting on thyroid replacement all sounded so simple, in reality I found it to be nothing like I’d imagined, and I felt betrayed. (This was back in 1996 before any information was available on the internet, so I had absolutely NO other perspective to rely on.)

When my endorinologist told me to “be patient”, I was ready to shove a RAI pill down his throat and tell HIM to be patient! That’s how patieint I was!

It sounds like you’re doing great. It does take time, and there’s no way to tell how this process will go. You can expect to need upward adjustments of your thyroid dose over time, as not all the damage to your thyroid occurs early after the radioactive iodine. Some of it happens later, both from autoimmune damage to the thyroid and from ongoing radiation damage. (Radiation damaged cells don’t replicate themselves normally.)

Lots of people seem to believe that once they have RAI their thyroid is completely gone, but this is not true. Most people still have considerable thyroid function of their own, at least for a number of years. In time though, this changes, as I said above and the combination of autoimmunity and radiation damage takes its toll. That’s why it’s extremely important that everyone who ever had RAI continue to follow up with their doctor and get thyroid function tests.

I recently discovered a cousin who had RAI 20 years ago for GD and had not been on thyroid replacement. She apparently didn’t realize that she was supposed to be seeing her doctor, and didn’t understand that her thyroid would eventually fail. She has been ill for several years, unable to hold down a job, and having mental problems, but her sisters couldn’t get her to see a doctor. All she knew was that the RAI “cured her goiter”. I was appalled to learn this.

The important lesson here is that everyone who has ever had a Graves’ diagnosis, no matter how well they are doing at the moment, MUST be certain to keep their regular appointments with their doctors and get those thyroid levels checked. It’s a good idea also to recommend to our family members that they have thyroid tests occasionally too, or at least make them aware of thyroid symptoms so that they are certain to get to their doctors immediately should any problems arise.

Sorry to ramble on so much. I hope you feel better soon, and I do admire your patience!

Dianne W
Online Facilitator

[Anonymous]

#1076020

Drakemm–(not sure what you want to be called)

That is pretty much what the doctors at the conference said about antithyroid drugs. Thanks.

Dianne W

[Anonymous]

#1076021

Just one disagreement with the comment that side effect issues do not increase over time. While this is probably generally true when it comes to young people taking the meds, I question if it is true about older people.

What is typical is for side effect issues to increase as we age, no matter what the medication. I’m talking about “seniors” here and not younger people. As we age, the liver and kidney functions usually start to decline, and there is an observable increase in side effects because the body is not able to remove the toxic by-products of drug metabolism quickly enough. Doctors have found that they need to decrease the dose of medications in older people OR prescribe additional medications to treat the side effect issues encountered. In medications where drug metabolism is done in the liver, the build-up of toxic by-products can sometimes damage the liver thus making things worse.

So, I think we need to be careful about making blanket statements that for everyone, taking the ATDs long-term will have no side effects unless they show up at the beginning.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1076022

Bobbi, that’s a good point about med side effects in liver and kidneys for older people.

I think most people who are on ATD’s as a long-term treatment are those who are maintained on extremely small doses; otherwise I think their doctors are encouraging them to choose something else before that.

I’ve known a few people on long-term ATD treatment who seem to become hyperthyroid occasionally while in remission, go on a low dose of methimazole for a short time until they normalize, and are able to go off it again and have normal thyroid levels again for extended periods. This, after being told by doctors that a second remission doesn’t usually happen.

My point is that we’re all different and the treatment choice is a personal one to be made with the patient’s preferences in mind, with a doctor who is willing to respect that patient’s preferences. Whenever I see a doctor who thinks that only one of the treatments is right for all patients, I am concerned for the satisfaction of his/her patients.

I’ve met quite a few patients who are really reluctant to have RAI and have their thyroids destroyed, even though they know that it’s a safe treatment and haven’t been misled into believing their offspring will grow two heads or they’ll get cancer, or some other wild claim about it. They simply want to keep that part of their body.

If they fail to sustain a remission on ATD treatment, their doctors often push hard for RAI without mentioning that long-term ATD treatment can be an option for some people if they can be maintained with low doses and understand the risks involved from possible side effects. In many cases at some point down the road the patient will become hypothyroid from the autoimmune process and need thyroid replacement, though presumably at smaller doses than had thyroid ablation taken place.

A reminder to everyone: Everything we say on the board is simply heresay information that we believe to the best of our knowlege to be relevant and something to discuss with your doctors. No one here is an expert; we are only volunteers with experience in this subject. So don’t trust what I say, trust your doctor, who has the training and experience to treat you. If you DON’T trust your particular doctor, get a second opinion.

Dianne W
Online Facilitator

[Anonymous]

#1076023

Thanks for all the replies! Dianne, I wished it was “patience” that I’ve come to terms with. I’ve only accepted Graves’, but my patience is very thin (heck, ask my two younger kids who still live at home). I just come here often and search for topics I need at the moment. Some very old, some fairly recent. Lately its been the tiredness after RAI and after my doctor (and another one since I wasn’t satisfied) told me my blood work came back smack in the middle of where it should be (and the secret doctor I saw said the same thing). It’s frustrating when I get so dang tired quickly and cant do much like I used to less than a year ago AND be told I am where I need to be “so see you in 4 months”.

Not sure if this is supposed to be a question post, or just a whining post (smile). Yes, I’ve come to terms that I will never be the same as I was a year ago. I am not as angry anymore, but my daugther yelled at me and really lost her temper and has NEVER done that. For one, I would’ve smacked her into next year, but I also knew what she was dealing with. I just looked at her with amazement and was surprised every person around me didnt’ smack me aside the head when I was going through this over a year ago (before knowing what I was dealing with). I was an emotional wreck.

A quick update on my daughter: well, she has lost a considerable amount of weight (and heck she is 5’5 and used to weigh 130 before all this) and now her clothes literally fall off her. Her face looks like she is on her death bed (gaunt from the weight loss) and her hair is so very thin now. She had the most beautiful thick , long wavy hair. She’s in pre-med and well, trying to study long hours is getting harder to do. She had more blood work done and even had this blood work ( I will get the name of it when I get home tonight) that determines the level of Graves’ a person has. Guess its new because I never had it and its $700 for this blood test. Good thing for insurance. It had two tests and one her level was 102 and it was supposed to be anything less than 35 and the other she was closer too, she had a level of 38 (I think) and the normal range is less than 30. I will reply back with the two blood test names and maybe one of the people here could enlighten me on these as I have never heard of them.

Thanks for being such a wonderful group to come and share lives with.

Kim

[Anonymous]

#1076024

Hi Kim,

Just thought I’d jump in ~ I’m not certain, but it sounds as if one of the tests your daughter had was the antibody level. It doesn’t so much give you an idea of “how much Graves'” she has as it lets you know what her antibody levels were at the moment she was tested. Those levels rise and fall for no reason we understand right now, but it can be valuable to have a snapshot. From what I understand, the level of antibodies doesn’t even correlate directly to symptoms ~ in other words, your antibody levels can be high, yet you experience few symptoms, and the reverse can also be true. Still, many people appreciate having that number known at some point.

Hope that helps!

~Ski
NGDF Assistant Online Facilitator

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