[Ski November 20, 2008 at 7:17 pm Post count: 1569]

#1019958

Hi there! I’m responding to this message from another topic (just thought I’d start fresh for you): ” title=”Very Happy” />

So i am posting because i would like to get clarification on the treatment process for hyperthyroidism. Essentially i was diagnosed over 1 year ago and have finally come to grips that i have a problem that i believe i cannot control. the doctors i have seen have bee very direct and in my opinion, rude about just "obliterating the thyroid and getting on medicine." While i understand that my body is not healthy, i feel like i have so many questions. for example:

-do i take antithyroid drugs first? if so what types of side effects happen? how long can take them?
-do i have to take other medicines with the antithyroid drugs or avoid certain supplements?
-can obliteration cause eye problems? what about long-term impacts?
-is it common to take a series of radioactive iodine therapies? why?
-how long after obliteration will i begin taking T4? how long does it take to normalize?
-how to people commonly feel after obliteration and before getting the rigt level of T4?

Anyone who has went through this and can help me answer these questions or help me ask the right questions is welcome. I know not everyone has exactly the same experiences, but i am looking for insight–anything that can help me understand what i might expect to experience…

Thanks,
seekingclarity

First things first ~ I’m SO glad you found us! This is exactly the point where you need more information, before proceeding along a path you may not personally agree with.

Right now, what your doctor wants is not nearly as important as finding out what YOU want. There are three valid options to treat your hyperthyroid condition.

ATDs are a good first line of defense, especially since they can get you to normal thyroid hormone levels quickly, so you can begin to feel better and then you’ll have an easier time when it comes to deciding on a course of action. When we’re hyper, it’s hard to think at all, much less concentrate and learn a lot of complicated new information.

The ATDs have the potential to cause some reactions, but not really what I would call side effects. In other words, if you experience any difficulty with ATDs, typically the answer is that you must stop taking them. The reactions are very rare. One involves damage to the liver, another involves a reduction in white blood cell count. Either can be reversed as soon as you stop taking the meds, so as long as your doctor is testing you (and you know what to look for), you can keep these reactions to a minimum. Some people (very VERY few) experience an allergic reaction to one or the other ATD. If that happens, you can try to use the other ATD (there are two choices) and see if you have the same reaction. They each work slightly differently, so there is a chance that an allergy to one will not mean you are allergic to both. If it turns out that you are allergic to both ATDs (again, very rare), you would need to choose between one of the other two treatments.

(Also, remember that too much ATD will make you hypo ~ that’s not really a "side effect," it’s a signal that your dose needs to be adjusted.)

The conventional wisdom is that you need to take ATDs for at least 12-18 months before you stop taking them and see if your body has attained remission (meaning that you are able to maintain normal thyroid hormone levels while taking no medication at all for at least a year). If you attain one remission, it’s impossible to say how long it will last. If you are unable to attain remission at all, you may want to look at the other options, or you may want to continue taking the ATDs. There are separate issues with taking ATDs long term, mostly related to the ongoing effect on the liver and kidneys. It’s a different issue than the liver damage that can occur right away.

As far as supplements you may need to avoid while taking ATDs, that’s a question for your doctor and/or pharmacist. I’m not sure anything would be forbidden, but you may need to limit certain things or take them at different times. I don’t have any specific information on that, there are thousands of potential supplements ~ the most important thing is that your doctor knows everything you take routinely.

FYI, sometimes we are prescribed beta blockers, which do nothing to control the thyroid, but are able to control some of our symptoms ~ the anxiety, tremors ~ and they protect the heart while we are hyperthyroid. Hyperthyroidism can cause irregular heartbeats, which can be dangerous, and beta blockers protect us from that. We don’t need to take the beta blockers once we are no longer hyperthyroid (but, FYI, we can’t quit them "cold turkey" either ~ typically we’re on a very low dose, so "weaning" off beta blockers takes no more than a week or two, but we need to know that it’s not a good idea just to stop taking them because we’re tired of it or we think we no longer need them).

RAI and surgery are the other two treatments, both of which are aimed at total destruction of the thyroid.

RAI, in one study, was shown to produce "temporary worsening of eye symptoms" in about 16% of patients. More recent studies have been unable to produce this same result, meaning not as many people have experienced this undefined "temporary worsening of eye symptoms." Still, if your eye symptoms are very bad, you may want to consider taking a concurrent course of steroids if you choose RAI. The first study I referred to indicated that patients who did this had a 0% chance of temporary worsening eye symptoms. No one is sure of the mechanism that causes this temporary worsening in some patients, unfortunately. It’s just something they’ve seen. If you have no obvious eye symptoms, you probably wouldn’t want to take the risk of steroids, as those risks are very serious, even for a short course.

Surgical removal of the thyroid has not been known to worsen eye symptoms.

Now, long term impacts of ablation ~ well, naturally you would need thyroid hormone replacement forever, and that needs to be managed. It’s nothing that changes rapidly, but our needs do change and we need to make sure we monitor them at least annually. Other than that, there should be no long term impacts. RAI has been used for more than 60 years, and other than a teeny tiny rise in the incidence of bladder cancer, there are no indications that patients suffer future conditions as a result. Remember, thyroid cancer patients take about 20 times the dose of RAI that we do, and even that is considered a therapeutic dose and is not known to cause other effects or conditions long term. If you have your thyroid surgically removed, the only long term effect is having no thyroid.

It is NOT common to take a "series" of RAI treatments. Should only be one time. If they "miss it by that much," a second RAI is one of the three choices (as usual). When I had my first dose (yes, I’m in that rare group), my radiologist/oncologoist believed there was some "perfect dose" that would leave my thyroid operating normally. I did not believe that, my endocrinologist did not believe that, yet the dosing doctor did not speak with either of us, just chose a dose and went with it. At my first follow-up appointment, my endo took one look at the chart and said "they didn’t give you enough!" Don’t let that happen to you, if you choose RAI and intend ablation. Make sure everyone is on the same page. (By the way, I did choose a second RAI and am now, finally, feeling really, truly normal.)

It’s impossible to say how rapidly you will go hypothyroid after RAI. The doses are generated using a few markers (uptake is one, I’m not sure of the others), and people react differently, so it’s just a "wait and see." RAI does most of its work in the first six weeks, but can still have an effect on the thyroid tissue for up to six months. In the first couple of weeks, the thyroid cells that are being destroyed will release the thyroid hormone they’ve been storing, so for a few days we can feel even more hyper, but it subsides as more and more cells are destroyed.

The body takes up to six weeks just to flush out the excess thyroid hormone, so it is rather uncommon that someone would take RAI and show up hypo at the six week mark. The trick is to know the hypothyroid symptoms and have a standing order for blood work. Once you are experiencing 4 or 5 hypothyroid symptoms on a regular basis, get blood drawn and see where you stand. Once you are hypothyroid, the doctor will prescribe a dose of replacement thyroid hormone that seems to "match" where you are in terms of your hypothyroid levels. Again, this is just a guess, and we need to wait about six weeks before our body fully metabolizes it in order to test again and see what the true effect is on our body of that does. So you can see that "dialing in" your normal, as your body is continuing to be affected, may take some time. Still, take heart, because EACH step along the way is a step toward wellness.

How do people typically feel after obliteration and before T4? Well, kind of like a ragdoll dragged through dirty dishwater. ” title=”Very Happy” /> The issue is primarily that we’ve been hyperthyroid for so long, so our body has been under 24/7 assault ~ then we obliterate the thyroid and our thyroid hormone levels dive, which is stressful as well. Once we get to normal levels of thyroid hormone, that’s when our body can truly BEGIN to heal. We like to use the analogy of a hurricane ~ after the wind stops blowing and the rain stops falling and the ocean recedes, is everything normal? NO. Much better, but the roof is still stuck in the tree. Same with our bodies after this onslaught. Once the thyroid hormone levels are normal, our body can start "taking the roof out of the tree," and that’s true for 100% of our body. So whatever you choose, take it easy on yourself. Your body has already been through a lot, and it’s got a lot of healing to do.

Again, welcome. Get some good books (we’ve got recommendations on the main website) and do all the research you feel you need before making your decision. Don’t let anyone TELL you what you MUST do, but do take into consideration any concerns your doctor may have for or against one or another choice of treatment. Don’t shut the doctor out of your decision, operate as a team. It’s important. It’s your health.

[npattersonModerator November 21, 2008 at 9:03 pm Post count: 398]

#1075273

I just want to say that this may be the "mother of all posts"! Great questions, Great Answers! Thanks, Ski.

[ohiolady November 21, 2008 at 9:54 pm Post count: 12]

#1075274

Ski:
What an informational post – AWESOME!
Am I understanding it correctly in a nutshell – if choose ATD will take approx 6 weeks to get thyroid non hyper and then most likely take it for 12-18 mo and then see if thyroid goes hyper again. I assume they have to "fine tune" the ATD dosage during this time. If it goes into remission great – but most likely not and then choose to go back on ATD or have RAI. If have RAI takes approx 6 weeks to get thyroid non hyper and then take hormone replacement. Hormone replacement dosage takes some time to fine tune. My endo said it would take a minimum of 6 months with the ATD (not sure if he meant to get thyroid non hyper or to have dosage "fine tuned")

[Ski November 21, 2008 at 9:59 pm Post count: 1569]

#1075275

Ho ohiolady,

In a nutshell, that’s pretty much it ~ but those six week windows are a guess, and an optimistic guess at that, so please take that into consideration. Also, don’t say "most likely not" for remission. The percentages I’ve heard are somewhere between 30 and 40% for a first try, and that’s nothing to sneeze at. I think the six months your doctor refers to probably includes the fine tuning.

ALSO ~ remember that after ATD therapy, presumably you wouldn’t have been hyper for a long period of time before doing RAI, so you’ll go into it healthier than when first diagnosed.

[ohiolady November 22, 2008 at 10:33 am Post count: 12]

#1075276

Ok so if 30 – 40% chance of remission why do so many choose RAI for first treatment instead of ATD

[Ski November 22, 2008 at 8:48 pm Post count: 1569]

#1075277

There are thousands of reasons to go with thousands of patients. I chose RAI for myself, for many personal reasons. The real issue is that there is no one perfect treatment, they all have pros and cons. The most important thing is feeling comfortable with your choice. The numbers may be skewed because many doctors feel that, given the options, they would choose RAI. They may have an overall impression of the three treatments, but they do not have the disease, so the fact that they would choose it doesn’t necessarily mean you would. OFTEN, they put forth their opinion as the "only" choice, and the patient is so desperate for help that they do it without looking into it any further.

[James November 22, 2008 at 10:26 pm Post count: 115]

#1075278

ohiolady wrote:Ok so if 30 – 40% chance of remission why do so many choose RAI for first treatment instead of ATD

ohiolady,

I just want to add to Ski’s thoughtful post.

In doing my own research, I have found remission statistics to be so varied. Even within the medical community, one Doctor may tell you one thing and another Dr. something else. Ski’s overall average of 30-40% may not be that far off the mark, however there are SO many variables that could come into play. Variables MAY include; how long ATD therapy is administered, how severe the case is, and even the notion that removing environmental triggers may have some impact on remission . . . and the variables don’t stop there. Statistics about achieving a subsequent (2nd) remission are equally as varied. Some say you are LESS likely to achieve a 2nd remission, others say the opposite is true, depending again on various factors. I personally never got hung up on remission statistics, but just did what I thought was right for me, just as Ski so intelligently suggested, do what “YOU are comfortable with”

In my case, I was given ATD’s for about 2 months and felt so MUCH better, and YES my endocrinologist recommended RAI after my uptake Scan, but because I felt so much better and didn’t have any serious side effects; AND I was able to reduce my ATD dosage, I decided to stay the course with ATD’s. His inclination was to administer RAI, my inclination was not to, for these and a variety of other personal reasons. In the end he supported me in that decision and we worked together to make sure I was properly regulated. I saw his role as assisting me in achieving and maintaining optimal thyroid levels (which he did). Beyond that, I did a TON of my own independent research to learn as much as I could about the disease, pro-cons to various treatments etc etc. At that point in time I did not rule out RAI as an option at some future point in time if required. It was "wait and see" and; "one day at a time", and lets see how healthy I am through the ATD process.

There is no perfect answer other than, do what you are comfortable with doing. Using of course any one of the three approved treatment options available to you.

Best regards,

James

[cathycnm November 22, 2008 at 11:50 pm Post count: 284]

#1075279

I recall reading one source that said that the higher the iodine content of the diet, the less likely ATDs are to be effective – and that effectiveness was dropping in the US as our diets contain more and more iodine. Thought that interesting. In fact, research like that made me more hesitant to do ATDs due to my underlying bone issue, that could get worse if remission did not happen or got worse. I think if you need something you are pretty sure is going to work the first time and stay working RAI – yet not carry surgical risk – RAI has real advantage. 90% seemed like a good shot – even though it was hard to commit to the lifetime need for thyroid. I really went back and forth the week after my RAI had been ordered and before I swallowed it. I just needed a sure shot. Cathy

[ohiolady November 23, 2008 at 12:44 pm Post count: 12]

#1075280

I think that is why I am having such a hard time deciding what to do – I want to know the right answer. That is part of who I am (I’m an accountant – there is always a correct answer in numbers) – always wanting to make the best decision without failure. My husband has been harping on me for years that every decision need not be monumental – Make a decision and go with it – if it doesn’t work – oh well – learn from it the next time. (oh to have that easy of take on it)

We have to choose what works for us, mentally & physically. I’m leaning towards ATD Tapazole just for the fact can have a chance at remission – Hey – only 2% of female population get GD so I must be lucky!

I do have one question about the bones – I am 5’7" – 120" (and losing) soaking wet and very small build any I wonder about osteoporosis all the time. Is there contridications on using ATD if osteoporosis is present? I don’t know I have it but I do know I have the right physical attributes for it.

I also want to say thanks for all who have responded to my posts – it is comforting to discuss this with others blessed with GD. Tammy

[Ski November 23, 2008 at 3:14 pm Post count: 1569]

#1075281

Hi Tammy,

As far as I know, no conflict with using ATDs when osteoporosis is present, meaning I don’t think the medication would specifically make it worse or prevent treatment, but check with the doctor and the pharmacist, since it’s a particular concern of yours.

[James November 23, 2008 at 6:10 pm Post count: 115]

#1075282

ohiolady wrote: I do have one question about the bones – I am 5’7" – 120" (and losing) soaking wet and very small build any I wonder about osteoporosis all the time. Is there contridications on using ATD if osteoporosis is present? I don’t know I have it but I do know I have the right physical attributes for it.

I also want to say thanks for all who have responded to my posts – it is comforting to discuss this with others blessed with GD. Tammy

Tammy,

Good advise to check with your Dr. concerning Bone density issues. My understanding is that it is in being “hyper” that we loose bone density, and ATD’s in of themselves don’t have much to do with that (but do ask you Dr. to be sure). I had two bone density scans in my Graves’ history. One in 1995ish while still on ATD’s and another one around the early 2000’s. Both times in the median (average) range for my age group and gender. A bone density scan is one thing that your Dr. will prescribe for time to time (or should prescribe). You don’t want to be hyper for sure . . and you certainly don’t want to be hypO either as that brings on a whole different set of problems. You will need to determine what is normal for you as far as thyroid levels are concerned, especially since the normal range is fairly broad in scope, and does vary somewhat from person to person.

Take care,

James

[cathycnm November 23, 2008 at 11:19 pm Post count: 284]

#1075283

Tammy – Because I was diagnosed with severe osteoporosis two years prior to getting Graves, I did a lot of research on this topic when I was deciding on treatment. As far as I know there is no contraindication to ATDs. The issue is that ADTs have a lower success rate – so during the time frame you are waiting to see if they are working . . . or the times when you go off to see if you are in remission – there is a chance that if you are hyper you could loose more bone. And bone – once gone – is difficult if not impossible to replace. Everything I read said that if you already have osteoporosis and then get Graves, go with RAI because it has a higher effectiveness rate. That does not mean that ATDs are contraindicated – it does mean they may not be the best choice long term as far as bone loss. My own lumbar spine is as bad as many 80 year olds who had normal scans at 50 – so we all loose bone mass over time. The rates just increase in osteoporosis and hyperthyroid. Checking with your doctor and getting bone scans is great advise. Cathy

[Hellie November 24, 2008 at 1:28 am Post count: 4]

#1075284

seekingclarity – boy, isn’t that something we do everyday?!?

I was diagnosed with Graves Disease in July, 2007. After my preliminary diagnosis by my GP I was given atenolol to get my A Fib in check and sent off for an ekg, thyroid scan and a 3 week wait for an appt. with an endo. At first I was pretty opposed to the thought of RAI but by the end of my 3 week wait I was feeling so badly that I was open to anything that was going to make me feel better. The diagnosis of Graves Disease was confirmed by my endo. He described my case as "severe" with thyroid levels that were "off the chart". I must say that I feel extremely lucky to have connected with a Dr. who was and always has been willing to work with me to find the path of treatment that we both were comfortable with. It was initially necessary to start treatment with ATD immediately to bring my thyroid levels to "normal". I feel this gave me the time to begin feeling better which in turn gave me time to contemplate my decision for treatment.

I was started on 60 mg. of methimazole for 4 days and then dropped to 40 mg. for the next 8 weeks at which time I would return for my next appt. During that 8 weeks the methimazole worked a little too effectively and I found myself "hypo". By my next appt. I had developed a whole new set of symptoms; daily headaches, extreme muscle aches, etc, etc. At my second endo appt. the methimazole was dropped to 10 mg and monitored for another 8 weeks. At my third appt. it was raised again to 20 mg. I stayed at this dose for the next 5 months or so when it was then dropped to 15 mg. Two months later it was dropped to 10 mg and after another 4 months or so it was dropped to 7.5 mg. Since my last appt. two weeks ago, I am now down to 5 mg. a day. (I forgot to mention that I was taken off of the Atenolol after 4 months) Once I started taking the methimazole and my original symptoms began to go away I was afforded the time and clarity of mind to make my decision to put RAI on the back burner and see where treatment with ATD would take me.

From the very beginning my Dr. has been willing to work with and support me with whichever path of treatment I chose to take. For this, I am extremely greatful. He allowed me to be an active participant. He listened to me and took into consideration my wishes. He actually looked at and took into consideration all of the journals and med/symptom logs that I kept. I was never too keen on destroying my thyroid without first exhausting all other possibilites. Fortunately, so far, the meds have worked for me. Will I go into "remission"? We don’t know. Will I stay on 5 mg of methimazole for years? We don’t know. Will I, at some point, find it necessary to have RAI? I hope not, but we do not know. Right now I am thankful for my restored health, both mental and physical. From the beginning I have read and researched online and sought whatever information about this disease that I could find. I have read with great interest the stories and information provided on this website. Armed with this information, I have been able to discuss my treatment and possibilities and fears with my Dr. At my last appt. he said he was more than pleased with my progress and we couldn’t have asked for more at this point! One of the things I have found most helpful is being able to get my lab results 3 to 4 days before my scheduled appts. My Dr.’s office faxes them to my home machine where I am able to go over them, compare them to the previous labs, and, in the comfort of my living room, compile and make a list of questions and concerns that I want to discuss at my appt. For me, it takes away the element of surprise and does not take away any precious appt. time.

I have met this disease with an open mind and a positive attitude, which I admit was difficult at times. I will continue to live one day at a time….good and bad. I will continue to be thankful and expect the best out of this journey as a person living with Graves Disease.

I will be counting my blessings this Thanksgiving and wish you all a very Happy and Healthful Thanksgiving as well. ” title=”Smile” />
Sorry for the long post!
Helene

[sjharner2001 November 24, 2008 at 10:37 am Post count: 18]

#1075285

Hi Tammy,
I feel similar to how you verbalized feeling above on wanting the right treatment. My 3y.o. daughter was diagnosed with GD at the end of Oct. Her pediatrician said she never saw such a young child with her condition and referred us to a ped. endo. We had our visit and were given the options. I was skeptical of the ATD’s — (all the side effects I read about) Her Dr. said for a child her age w/ her severity, she was hesistant (she felt the possible adverse effects were greater in her condition) . I was even more skeptical of RAI — I couldn’t face killing off my 3 y.o.’s thyroid. Surgery — not an option in my book.
We consulted another ped endo. He again, gave us a similar answer: not to fond of starting ATD’s w/her, RAI (this Dr. felt was a "safer" route) and surgery.
I debated, my husband debated, I did tons of research and asked lots of questions…. both Drs said treatment is our choice, a difficult choice, but ours.
In the end we chose RAI. It was especially difficult for me, but I know this was the right choice. We are following up with the first ped. endo we visited.
My daughter had RAI done last week. So far she is okay, on beta blockers and going for lab draws every 3-4 weeks. She complained of mild throat pain.
Like everyone says here — you have to choose the best treatment that you feel is right for you.
Wish you luck and good health!
Janet

[mamabear November 24, 2008 at 11:23 am Post count: 484]

#1075286

Janet, thank you for sharing. I have been on PTU, Tapazol wasn’t an option for me as I was trying to get pregnant at the time. I did well on PTU and I know the side effects vs being Hypo after RAI. May I ask just out of curiosity what ATD’s did they recommend and what were those side effects?

Glad the dr’s are keeping track of her levels, when are they thinking of putting her on Thyroid replacement?

Good luck with this and God Bless!!

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