[Anonymous]

#1084295

No, the first doctor was undoubtedly trying to keep your thyroid hormone levels within the normal zone, not make you hypothyroid. With an autoimmune disease, the antibody levels can rise or fall for no well-understood reason. If antibody levels rise, there can be more stimulation of thyroid cells to produce hormone and we can become more hyperthyroid. If antibody levels fall, there will be less stimulation for hormone, and we can move back towards normal levels of hormone. Over time, the antibody attack will cause the thyroid cells to poop out completely: hypothyroidism is the natural progression of the disease.

What the methimazole does is introduce a chemical which blocks the biochemical reaction used inside thyroid cells to turn iodine into thyroid hormone. The idea is to take just enough to allow you to have normal levels of thyroid hormone being produced. If you take too much you will become hypothyroid and too little you will remain hyperthyroid. With fluctuating levels of antibodies, you could need more or less over time, and the only way to determine what is needed is with blood tests.

The easiest (apparently) way to deal with things is to eliminate the thyroid from the equation. Without the thyroid, we go onto replacement hormone and the levels of that can usually (but not always) be fairly constant over time. I’m one of those unluckier people whose replacement needs rise and fall with irritating irregularity. It is irritating because I’m still getting blood tests two or three times a year to check on hormone levels. I do, however, feel very good most of the time. But enough of my thyroid is left after RAI, according to my endo, that the variations in antibody attack still can make for variations in my replacement hormone. In my research, though, I decided that replacement hormone was gentler on my body than the ATDs were, which is why I opted for RAI.

It is possible to try for euthroid conditions (i.e. normal levels of hormone without medication) with either RAI or surgery, but it is not easy to accomplish and frequently fails to stabilize things.

One thing to keep in mind: you are only hypothyroid if you do not have adequate levels of replacement hormone in your system after surgery or RAI. Some people get fixated on the fact that they “need” replacement hormone therefore they “are” hypothyroid. This is technically correct, I suppose, but with adequate levels of replacement your body functions normally, which is the most important consideration.

As for exercise: if your doctor has told you it is safe for you to exercise, you must do it. That is the only way to rebuild muscle lost to hyperthyroidism and make you feel strong and energetic again. And that is the best way to control weight. Muscle mass raises metabolism. With muscle we can eat more without gaining weight. With muscle loss, we cannot eat as much as we normally would and still maintain our desired weight. In addition, because of being hyperthyroid, we may have lost some bone mass. Weight bearing exercises are reccommended for stopping bone loss, and perhaps even regaining some of the lost ground.

I do understand, because I’ve been there, but if you have to drag yourself outside by the nape of the neck to exercise, do it. Take a 20 minute walk each and every day. Rock in a rocking chair. Plan some recreational exercise. Dance while you’re doing housework. Whatever it takes to try to rebuild muscle. Do not wait until you “feel like it”. You may never “feel like it” until you have done enough of it to turn your body conditioning back towards a positive point. You will feel better, provided you do not overdo things at the beginning. So take it easy at first, but make yourself get some exercise.

Wishing you luck,
Bobbi — NGDF Online Facilitator

[Anonymous]

#1022956

I was diagnosed with Grave’s Disease a little over a year ago. I opted at the time to do medicine vs. RAI because I had just had our 2nd child. The doctor initially started me on 10mg of methimazole once a day, then 2, then 3 and then 4 pills daily. I switched doctors during this time and the new doctor gradually decreased my medicine daily from 4 pills, to 3, to 2 and now I’m on 1 10mg methimazole daily.

Here’s one of my first questions – were the doctors literally trying to take me from being hyper-thyroid to hypo-thyroid to find my “happy medium”? I feel like I’ve been on a roller coaster the past year going from hot to cold, skinny to fat, energetic to lethargic, etc. How does the medicine work?

2nd question – if I choose to do the RAI after all, will this take me to hypo-thyroid permanently? Will I still have to take medicine or thyroid replacement for the rest of my life?

I’m in a catch-22 right now. I’ve been putting on weight like crazy lately and I can only assume that it’s because I’m turning hypo thyroid. I’ve also been so lethargic with all the going back and forth that I haven’t felt much like exercising. Will all of this eventually level off?

This board has been a life saver since most of my symptoms make me look neurotic to friends/family. It’s nice to see that I’m not alone and can get a wealth of information from this website.

Thanks a million for having this resource available to us!!

[Anonymous]

#1084296

Hello, I have just found your site. I was diagnosed with Graves ten years ago six weeks after the birth of my son. I did have a few symptoms but was thrilled at the weight loss so I didn’t worry about the thyroid problem. We also soon moved out of state. As long as I stayed skinny I didn’t bother seeing a doctor. Well, it was great while it lasted but eventually I began to gain weight. Moved again and was saw a doctor. Referred to an endo who tried meds. but I was allergic and broke out in hives on everything he put me on. So, the only alternative was RAI although I did not want to do it (my husband instisted). My concern was gaining even more weight. My mom had her thyroid killed years ago and has always struggled with weight – it’s been my biggest fear. Anyway, did the RAI (husband made me) but they evidently didn’t give me enough because it lives. The doctor wanted to redo it but I wouldn’t. He had his chance and didn’t offer any refunds and I didn’t feel like paying again.

I’ve also been reading some personal website stories and it sounds like I’ve been just as well off leaving it alone.

Anyway, that was probably 6 years ago. Here are my questions? Can the disease flare up at times or do symptoms just come and go? My symptoms, at the moment, are occasional heart palipations, stinging of the eyes, difficulty concentrating, and lack of motivation. Another major reason I wouldn’t do the RAI again was because I’m quite certain that I inadvertanly exposed my son to the RAI. Will that affect him in any way?

Thanks for your help!
Glennis

[Anonymous]

#1084297

Hello Glennis,

I’m a little confused about where you stand right now in your treatment — you had RAI, but you are still hyper? Are you under the care of *any* physician for your condition — do you have regular blood tests to confirm your thyroid hormone levels?

The bottom line is that a hyperthyroid condition is very dangerous to us. Even small levels above normal can cause irreversible damage to our heart and our bones if left untreated. Long term hyperthyroidism is fatal 50% of the time.

I understand the desire to “leave well enough alone,” but in this case it’s really not an option if you want to continue living a healthy life for many years into the future. The treatments for Graves’ may have their downside, but death isn’t one of them. Inconvenient, they can be, time consuming, yes, but fatal, no. And hyperthyroidism simply becomes more and more debilitating over time, even if you’re one of the “lucky” 50% that live.

If your throid “still lives” and you have Graves’ disease, then the antibodies continue to attack your thyroid and cause fluctuating levels. The fluctuation is almost as dangerous as continued hyperthyroidism, because it puts your body in an almost constant state of “emergency.” Periods of stress will typically make it worse, and that’s just when we do NOT want to end up over the edge.

As far as exposing your son to the RAI, it’s probably nothing for you to worry about. The two issues with RAI are: first, the actual RAI, which we ingest. Whatever is taken up into our thyroid damages the thyroid. Whatever is NOT taken up into the thyroid is flushed out of our system through regular fluid waste channels (urine primarily, but also sweat and saliva). If your son did not come into contact with any of these substances in the first 2 or 3 days after your RAI, then he was not “exposed” to your RAI. The second issue with RAI is the radiation that emanates from the neck while the RAI is damaging the thyroid. It is a VERY small amount of radiation, and IF your son were exposed to that for any length of time (it would really have to be hours spent sitting and hugging only your neck), the issue is still only one of cumulative exposure over a lifetime. Doctors limit our total lifetime exposure because it can add up, but if anything happened to your son due to excessive radiation exposure, there’d have to be lots of other exposures playing into the end result.

The amount of radiation we receive, as patients, is very small. I think it’s been compared to a good day in the sun. Thyroid cancer patients typically receive doses 10 to 20 TIMES the dose we receive, and even that is considered safe for them. If you consider that any exposure you may have allowed your son to have would have been a tiny fraction of the exposure YOU had, you’ll see that it’s nothing to fret about.

Wishing you luck — please do seek treatment, you’ll be glad you did! My first RAI left me “oh so close” to normal levels, but not AT normal levels, and I avoided further treatment for more than a year because I “felt fine.” Ultimately I realized I was NOT fine, and I had a second RAI. It did the trick, and the way I feel now is COMPLETELY different from the way I felt when I was “almost” well. Now I see how sick I was.

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1084298

hi. new here..glad i found everyone! My situation is I’ve been on Tapazole (varying doses) for 5 months. My doctor had increased my meds to the point I was hypo, so now he has me on 30 mg of tapazole plus one synthroid tab every morning. So now i feel all the hyper symptoms and the hypo..needless to say, the leg cramps are unbearable, no sleep, lack of libido and TIRED, TIRED, TIRED. To make it worse, the eye diseas (i see you call it TED), is worsening. One eye is starting to protrude a little bit (bulge) and the other one, the lid is becoming increasingly swollen. The bottom of my eyes are equally ugly, swollen and red and puffy, have been for a year now, long before diagnosis. and I have been told that it will remain this way or worse for the next 5 years before the eye surgeon will touch them unless it is medically necessary for my vision.

My question is, the endo has told me that I have one more month of therapy, then we’ll see, but I have to make a decision, RAI or tapazole for two years. He said that since I have TED i will need 30 mg of Prednisone a day for 3 months prior to RAI and that will decrease the chances of increasing the TED side effects to only a 6 percent chance. Without the Prednisone it’s a 30 percent chance the eyes will worsen.

Not much choice to me…long-term tapazole. I just wondered if anyone had any feedback or could explain clearer how I am still needing to take Tapazole and needing the synthroid at the same time. And if they have any advice or suggestions, I’d be happy to hear. Thank you
ps..my T-4 FREE is .6 (low) and my TSH is 9.59 high, but i am not sure how high that is, i have no chart.

[Anonymous]

#1084299

Some doctors still try what we call here a “block and replace” strategy. Back in the 1980’s, a research study in Japan showed extremely high remission rates by making people hypo on meds, and then replacing their thyroid hormone with levothyroxin (synthroid, et. al.). NObody else has been able to duplicate those study results, but it is still a common in treatment for children and some adults.

The study that I have seen showed that there was a 16% chance of RAI “temporarily” worsening the eye symptoms. It was thought that it was due to an immune system response to the radioactive iodine. This same study showed that there was no temporary increase in symptoms with the prednisone. It is possible that your doctor has access to other studies than I have seen. But if you want to see the one I know of, it was published in the New England Journal of Medicine, and it is online, in their archives. You can run a search. It was a January edition, but I do not remember what year, precisely.

Your doctor has not mentioned surgical removal of the thyroid, apparently. There may be a very good, medical reason for that, but you might ask. Surgery is used by patients with the eye disease because it does not appear to aggravate the eye symptoms, temporarily. It is not safe, however, for all patients.

None of the treatment options will avoid the eye disease if you develop it.

I hope these explanations help.

Bobbi — NGDF Online Facilitator

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