[James]

#1066547

Audrey,

You are most fortunate to have a Dr. that will support your decision and work with you. Having a full mutual respect as you do with your Dr. is so key in your overall well being and health care.

It is not fully understood as to why the suspect antibodies may come and go as you seem to have been experiencing. I share your mindset in that I was prepared to use antithyroid medication indefinitely with the goal of a sustained remission, but not necessarily expecting that I would ever get there for certain. I think it is important to have reasonable expectations before embarking on any treatment option. I have spoken with many people over the years who have tried ATD therapy and the results vary significantly. Some individuals may be very sensitive to even minor changes in thyroid hormone, while other may not. In cases where both Graves’ disease and Hashimoto’s antibodies are present , some patients swing from hypo to hyper on a regular basis and become frustrated with this see-saw affect. On the plus side, others do quite well managing on a consistent maintenance dosage of ATD’s for many many years.

In my opinion, the healthiest approach is to have reasonable expectations and take one day at a time and see where it goes. You indeed may be one of the fortunate ones who is able to achieve remission and stay there. The key thing is that you are using a medically acceptable treatment option and that you have a Dr. that is fully backing you.

Keep us apprised of your progress.

James

[hyperk]

#1066548

I too have chosen the ATD route, and use the block and replace method to control my thyroid levels. I have recently been given my first shot at remission (I’ve been taken off the meds) for the first time since my Feb. ’07 diagnosis. Like James and many others, I too hope for a sustained remission, but I don’t really expect that to happen. If it does, lucky me! If not, I’ll go back on the ATD’s and use them indefinitely to manage my Graves.

[audrey]

#1018699

Hi! I just found out about a month ago that I definitely have Graves. My story is actually a little different. I found out almost two years ago that my TSH numbers were too high. I didn’t do anything about it for about six months till I finally couldn’t stand being so tired all the time and went to see my PCP. She tested me again and looked at my health fair results and recommended me to an endocrinologist. Since then, I have been mostly in remission. My doctor had run blood tests on me several times to try and catch me high so she could order the iodine uptake test. In fact, in 2009, I got blood drawn more times than EVER before in my life, lol! Finally, the 12/29 blood test showed me high again. Of course, when I got the results, I was in Las Vegas on vacation. ” title=”Very Happy” /> Typical for me…..once we got home I had to hurry and make an appointment hoping I wouldn’t go normal before I could be tested. Believe it or not, I was actually thankful I didn’t go into remission so I could find out for sure one way or the other what was going on! Long story short, the test came back positive. I just came back from seeing the doctor. Because I seem to go into remission naturally, I’ve decided I don’t want to destroy my thyroid. I’ve decided to take the methimazole which I will take in very low amounts (she said 2.5 to maybe 5mg for now) in hopes that it will kick me into permanent remission or at least control my levels. What I really want to know is how many members of this board are in the same boat. Honestly, reading others posts, I seem to have it very easy. Other than occasions when my heart races, brief periods of exhaustion, dizzy spells and trouble regulating my body temperature, I don’t seem to have ANY of the other scary symptoms so many others have. Has anyone else tried the methimazole first or did most go straight to surgery/radiation? I adore my doctor. Since I live in a small town in Western Colorado, my choices nearby for a doctor were limited to ONE doctor an hour away. Lucky for me, she’s a huge advocate of avoiding surgery/radiation if at all possible. It seems that isn’t common with American Endocrinologists. Was anyone else given options? Either way, I’m glad to finally have a concrete answer and a plan of attack. I’ve already started to eat healthier (no more sneaking into the pantry for spoonfuls of brown sugar, lol!) and my husband is supporting me with everything which is a huge help. Thanks for sticking with my long story and for any advice you all can shoot my way!

[Jake_George]

#1066549

My first choice was to use ATDs for as long as possible then use radiation or surgey if needed. In my case each time I was backed off of the antithyroid drugs I went hyper right away. So I chose radiation for my treatment. It worked well for me and twelve years later I am in really good shape, Graves’ wise, and life is good.

My Mom came down with Graves’ about eight years ago and stayed on ATDs until she crossed over a few years back. He crossing was not related to Graves’ and she stayed on ATDs until the end and they worked well for her.

If long term remission is in your future I hope it works well for you. Just remember as long as your Antibodies are active, they are still attacking your thyroid. So over time your thyroid may not be able to function as well. Work with your doctor and keep a good watch on what is happening with your levels and let us know what is happening.

Jake

[Kimberly]

#1066550

Hi Audrey – I have been on ATDs for 2+ years, and my levels are fairly well controlled with a low dose of meds. At our GDF conference last fall, one of the endocrinologists stated that he would support a patient in using ATDs for the long haul — as long as they were able to keep their levels stable on a fairly low dose…and as long as they did not have any side effects, such as liver or white blood cell complications.

One thing to keep in mind if you are stopping and starting the meds periodically: this doctor also mentioned that the risk of side effects is highest when you first start taking the meds. This applies whether a patient is brand-new to the meds…or is starting up again after a period of remission. While the side effects *are* rare, it’s good to monitor liver and WBC function with periodic blood tests (complete metabolic panel and complete blood count).

A quick question: was it your T4 instead of your TSH that was high? The reason I ask is that Graves’ patients generally present with *high* T4 and *low* TSH. The symtoms you describe are definitely in line with hypERthyroidism, but a TSH that is out of range on the high side usually indicates that the patient is hypOthyroid.

Best of luck!

[audrey]

#1066551

Whoops! Yes, it definitely was my T4 that was high. I’m still new to this so all the terms are very confusing as I’m sure you all are aware. Thank you for the encouragement. My husband was really freaked about the diagnosis at first when he saw the possible repercussions of non-treatment but now that we have set a course for treatment, both of us are feeling much better. To be truly honest, this diagnosis has kick-started us into a healthier lifestyle and diet. We pushed exercise to the back burner (too "busy" and too "tired" to do it) and eating better was more time consuming and expensive. So, if nothing else, Graves is forcing me to treat my body better and that’s a good thing! I’m so glad this board is here! Thanks for helping those of us who are now traveling this unfamiliar and scary road!

[Kimberly]

#1066552

audrey wrote: Whoops! Yes, it definitely was my T4 that was high. I’m still new to this so all the terms are very confusing as I’m sure you all are aware. Thank you for the encouragement.

No worries! It takes a while to get all the jargon down. ” title=”Very Happy” /> Especially since it seems counter-intuitive that if TSH is *low*, then our thyroid levels are usually *high*. But TSH is the hormone that signals to the body that it needs *more* thyroid hormone. So if it’s high, that means the body doesn’t have *enough* thyroid hormone and needs to make more. If it’s low, that means the body has more thyroid hormone that it needs…so production needs to be shut down.

Good for you for changing your lifestyle to support optimal health! I ate pretty healthy before my diagnosis, but I have since gone even further in reducing processed foods and checking ingredients on the processed foods I do buy. I’ve also found that getting adequate sleep is important in the healing process. My old 5-7 hours per night just wasn’t cutting it!

Best of luck!

[audrey]

#1066553

I’ve also found that getting adequate sleep is important in the healing process. My old 5-7 hours per night just wasn’t cutting it!

Oh dear! My problem isn’t going to bed early enough, it’s staying asleep! What do you do combat the insomnia? It isn’t every night but it is frequent enough that I’m exhausted some days and with my job, I HAVE to be on my toes! Also, I’m a detention deputy in a jail and soon I’ll be switching to nights. That will cause even MORE sleep deprivation since I don’t sleep well during the days. I don’t like taking sleep aids so what other options do I have for a restful night/day of sleep?

[Kimberly]

#1066554

audrey wrote: Oh dear! My problem isn’t going to bed early enough, it’s staying asleep! What do you do combat the insomnia?

Hi Audrey – This is going to sound odd, but stay with me. ” title=”Very Happy” /> If you click in the white "Search" box at the top of this page (just under Graves’ Disease Foundation – Online Support Bulletin Board), you can search for posts by keyword. Type in "Ovaltine" — but without the quotes — and then click the gray Search box.

Not that Ovaltine is the solution to your sleep issues — but this will isolate two older threads that included some great advice on sleep issues. If you had used the keyword "sleep" instead, it would have pulled up a ton of threads.

Ski is very well-versed on sleep issues, so if she will forgive my plagiarism, I will cut and paste one of her responses below. ” title=”Very Happy” />

[Kimberly]

#1066555

Repost – Original Thread Titled "Help me sleep PLEASE!!"
by Ski on Sat Jun 06, 2009 8:21 pm
The sleeping issue is tough, but it’s worth figuring something out. We had a doctor speak with us at one conference about sleep issues, and he said that it’s important to solve this before it becomes "chronic," because then it turns into something mental as well as physical, and it’s harder to correct.

There are a few things that may help. First, remember that laying still, relaxing your body, is nearly as good for you as full-on sleep, so pursue whatever you can accomplish successfully, and try not to be frustrated when sleep doesn’t come as easily or last as long as you are used to. Your body is chemically imbalanced right now, so there’s only so much you can do to overcome that until the meds (or whatever treatment you choose) take effect. Do the usual things ~ avoid alcohol and caffeine in the later part of the day, take a long, hot bath or shower shortly before you plan to go to bed, go into a dark, quiet room and lay down. No TV ~ it’s bright, the images change often, it’s rather "exciting" to the brain ~ but reading is okay, if it helps you. If it creates one more distraction from rest, skip that too. If you haven’t been able to sleep for very many hours at a time, you may want to go ahead and let yourself stay up a little later than a "typical" day, so that when you DO go to sleep, you’re likely to sleep all the way until your alarm goes off. I think some of the hardest times are after we wake up in the middle of the night and can’t get back to sleep.

In any event, if you find yourself laying there and being frustrated and your mind running a hundred miles an hour, get up again, move to another room, turn on some lights and do something else. Choose to read a magazine or get something done that won’t take too much physical energy to do. Then try again.

If it’s at all possible, look into daytime naps to "make up" for sleep you lost the night before. I’ve read several sleep studies, and they all came up with different answers ~ one said it’s impossible to make up sleep, another said it’s essential ~ so feel this out for yourself. If a nap one day means you sleep even worse that night, well, that’s the answer for you. If it helps you function during the day and doesn’t affect your ability to sleep the next night, again, there’s your answer.

It’ll get better as you proceed through treatment, I promise Hang in. We’ve all come through to the other side, and you will too.

[Sue_Conard]

#1066556

You’re NOT a minority, but this post can help me too. I’ve had GD for 18 months now and have on different dosages of Tapazole for treatment. Like James said, I’ve been a see-saw between hyper and hypo the last year and 1/2. I can’t have the radiation b/c I have TED.
My question to any facilitator that can answer this for me is WHAT HAPPENS to those antibodies that we are producing "IF" we have our thyroid removed?? Can the eye disease WORSEN?? Will it eventually affect my other eye?? What does those antibodies ATTACK "IF" the thyroid is not there for it to attack?? Does it decided to attack "other organs"?? I don’t know this answer and I’m so curious so if anyone could help me out here, I might would "reconsider" a thyroidectomy since I don’t know who I am anymore.

[Kimberly]

#1066557

Sue Conard wrote: My question to any facilitator that can answer this for me is WHAT HAPPENS to those antibodies that we are producing "IF" we have our thyroid removed?? Can the eye disease WORSEN?? Will it eventually affect my other eye??

Hi Sue – One of the presenters at last year’s conferernce shared a study that compared antibody levels in Graves’ patients following treatment of Anti-Thyroid Drugs, RAI, or Thyroidectomy. With both thyroidectomy and ATDs, average antibody levels were significantly reduced over a period of 12-18 months. With RAI, the average antibody levels spiked after the first 6 months of treatment, and then were gradually reduced over a 3-5 year period. At the end of year 5 with RAI, antibody levels were still somewhat elevated, although much lower than they were prior to treatment.

Keep in mind taht these were "average" levels from all of the patients in the study — so some individual patients might have had better or worse results with the various treatments.

Also, any type of surgery does carry some level of risk, so this is a decision that is best made in conjunction with your endocrinologist…and after consultation with a thyroid surgeon.

Best of luck!

[Bobbi]

#1066558

Since the advent of soft-tissue imaging techniques (ultrasound, MRIs, etc.) doctors have found more and more of us to have "some" eye disease, Sue. One article I read suggested that 100% of us could have "some" eye changes due to thyroid eye disease. If there is significant eye disease already present, there is a sound argument against RAI, because in a small percentage of patients there has been shown to be a temporary rise in symptoms of the eye disease after RAI. The study I read suggested that RAI stimulated the immune system temporarily in ways that surgery did not. This same study however showed that taking prednisone eliminated all temporary increase in antibodies after RAI. So, if there are reasons why a patient could not do surgery, then RAI might be a possible remedy if prednisone could be tolerated.

Your doctor is going to be able to help you figure your way through this decision. And I wish you good luck.

[Sue_Conard]

#1066559

THANKS SO MUCH KIMBERLY & BOBBI for your responses.

I’m currently starting to "level out" with my numbers. My TSI started at 584 and now it’s 125, my TSH has gone between 0.005 to 32.75 to currently 5.7. My T4’s are within, what’s considered, a normal range of 1.0 now.

Like I said, I’ve been fighting this monster for 18 mos. and fighting my endo dr. AGAINST surgery too. Now that my levels are coming within normal range, could I be going into something called REMISSION on my antithyroid drug?? My drs. said I could possibly "level out" in about 18 mos.!! Does anyone know yet if I can scream to the mountaintops yet?? Thanks for any input or encouragement you can send my way!!

[Bobbi]

#1066560

Getting your levels under some type of control on the meds is terrific. That is definitely something to feel good about. But remission is defined as being able to go off the meds for a year or more while maintaining normal thyroid levels. Many people who do the meds stay at controlled levels of hormone, and some with a low level of medication, but that does not mean that they can go off the meds necessarily.

[Author]

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