[cwilson]

#1019800

Hi all,

I am very excited that I have found this website and message boards. It will be nice talking with people who have what I have and getting advice from all of you. Here goes. I just got diagnoised with Grave’s Disease. I didn’t want to take meds at first but decided to go ahead. I am taking Methamizole(sp) Tapaozle is the brand name. I am also on a beta blocker. I am looking into alternative medicine also. Have anyone here tried acupuncture, herbal supplements or anything else? I have a hyperthyroid now and I am afraid of going hypo. I haven’t lost any weight from the Graves but I think my family doctor caught it very quickly. I noticed my goiter enlarged in Nov 2008 and I started taking medicine about 1 week ago. I have noticed that my goiter seems to be going down. I don’t sleep well at all though. I do exercise and try to eat healthy. I am not going to say I don’t splurge sometimes with food though. I weight right now arounjd 130 and I have actually been trying to lose around 5-10lbs. Any advice from anyone would be greatly appreciated.
Thanks to all and many blessings
Christa

[DianneW]

#1074125

Hi Crista, I’m glad you found us.

You made a good decision to be treated conventionally. There is no evidence that any alternative treatments have ever been able to help in the treatment of Graves’ Disease, and left untreated, Graves’ Disease can be very dangerous, even fatal in some cases. When treated, most people have a very good outcome. If you decide to use any alternative treatments along with your meds, be sure to tell your doctor, as some herbal substances can actually be dangerous for people with Graves’ Disease (or interfere with treatment). Kelp is one notable supplement that should be avoided.

Not everyone with hyperthyroidism loses weight, especially if the hyperthyroidism isn’t severe. Hyperthyroidism causes an increase in metabolism but also causes an increase in appetite, so in some people the two balance out, especially when the associated fatigue cause a decrease in energy expenditure. Some people even GAIN weight when hyperthyroid (I was one of these).

Talk to your doctor about whether it’s good for you to be exercising right now. Most doctors advise their patients to wait until thyroid levels are under control because of hyperthyroidism’s effect on the heart and muscles. Right now, restoring your health is more important than weight concerns, which you can prioritize when your safety is less of an issue and your doctor says it’s okay.

Usually within six weeks on the methimazole your thyroid levels will be normalized and you will begin healing. Your doctor will need to monitor your blood levels to make certain he isn’t over-treating you so you don’t become hypothyroid, and if he does a good job of that and you don’t have side effect issues with the drugs, you will probably feel quite a bit better before long and perhaps see a remission when you stop the meds in 12-18 months. In the meantime, you can hang out on this board and learn about your other options in case it doesn’t go that smoothly, and talk with others going through similar experiences.

Best wishes,

[cwilson]

#1074126

Dianne,
The Dr. did ok me to exercise. He knows how concerned I am about my weight but I don’t know that he really cares. I am actually thinking of stopping the meds with his ok. I can’t sleep at all and my stess level is ever higher because of the weight concerns. I am all about getting better but I have never been a person to like meds anyway. I try and avoid them at all costs. I am not someone who beleives meds are the only option. I beleive very firmly that my body will take care of it’s self and work through it’s issues with the right dietary changes, lifestyle changes etc. I really love this site because I bet there are people out there like me who believe in the same things I do. However, I am realistic. Not all things can be changed with dietary changes, lifestyle changes etc. It is something I would like to try. My Dr. says the same thing about alternative meds that they aren’t proven. I have read several books that say it has been proven to help and I believe that if you believe it will, it just might .If you aren’t someone who believes in it they it won’t work. I want to hear everyone’s take on what they’ve done. I am open to all discussion’s . I love everyone’s opinion. I really appreciate you replying to my post. Thank you and I will keep everything in mind that you have told me.
Christa ” title=”Smile” />

[James]

#1074127

Christa,

I share your sentiments on many fronts so I felt compelled to respond to your post.

Firstly: Your Doctor said that it is OK for you to exercise. I can’t tell you how important maintaining some degree of exercise was so important to my overall well being throughout this time in my life (not from a weight management perspective), but more from a “keeping sane” perspective. I was probably at the hallmark of physical conditioning at the time of diagnoses some 15 years ago, and dealt with the disease expediently before any major physical damage was done. Mr Doctor fully realizing that, said that I COULD maintain a fitness regimen, but told me not to plan any Marathon equivalent activities, until things were well under control.

Contemplating stopping the meds while in a hyper thyroid state is probably the worst thing that you can do however. I share your sentiments in that I too do not like to have to take medication for anything, but sometimes we do not have a choice. Especially if it is your goal to keep your thyroid and aiming for remission. Like Dianne said, if you choose alternative treatments, your doctor must be on side and should be able to guide you as to what things you should avoid at a minimum. I am a strong believer and proponent of good lifestyle choices/diet too; and believe that all these things play a role in healing and getting our immune system (the underlying cause) back on track. Proven or not proven, good living (including stress reduction), can only help in the long run, no matter what treatment option one chooses. I think you are on the right track as far as that is concerned. Your goal should be to take your medication as required under your Dr’s care and strive to reduce the requirement for meds over time as determined by future blood tests. Too idealistic of an approach? Perhaps some would think so, but for me it was practical and I got the results I was looking for. Looking back over the last 15 years, I wouldn’t have done it any other way.

Wishing you the best and look forward to hearing about your progress.

James

[Ski]

#1074128

James, that is a great post.

Christa ~ the fact is that, no matter what you may have read, there has never been a case of someone being "naturally treated" who was able to reduce thyroid hormone levels reliably. I believe, as James does, that taking care of yourself in general, learning how to reduce your stress and treat your body well, will ultimately make the journey better. But some sort of conventional treatment is ESSENTIAL to the process. Perhaps you can minimize the need for meds, perhaps you can go into remission sooner, by paying attention to alternative treatments. That’s GREAT, we encourage health in all respects. You cannot remove the need for meds entirely, at least up front, and when and if you find yourself in remission, you will still need to be monitored.

Make sure your doctor knows every alternative treatment/therapy you are engaged in throughout the process. Some "natural" remedies can actually be harmful, used in conjunction either with each other or with the other meds you take. Just because you can get it without a prescription does not mean it is harmless.

In the days before we had the three options of treatment that we have today, fully 50% of Graves’ patients died from this disease.

Thyroid hormone cannot be adjusted by eating right, exercising and getting stress under control. If there were any truth to these claims, we would be shouting them from the rooftops, we would have ALL preferred handling it that way. I’ve been here more than ten years and never once has an actual human being appeared that could attest to their "natural" treatment working to control their thyroid hormone levels. Never. And I do know many who have tried.

We want you to be safe and healthy. The safest thing is to work on getting your thyroid hormones under control, THEN worry about lessening/stopping the meds. The typical course of ATDs is to start on a high dose to get your levels under control, then back off to smaller and smaller doses. When everything is working together, you may be able to keep yourself healthy without ATDs (the definition of remission). Look forward to that day, but don’t rush it. Please.

[cwilson]

#1074129

James and Ski,

Thank you for the advice. I am still having a really hard time. The problem is I am not sleeping due to stress. The stress is coming from the fact that any meds can cause me to go hypo and gain lots of weight. That may sound vain but I can’t seem to get my emotional stress under control. I am thinking about doing some acupunture to help get stress under control. I have been adviced by many to not take herbal supplements. I have been talking with my dr a lot and he definately doesn’t want me taking anything else. Any advice on how to get stress under control?
Thank you so much for all the help,
Christa

[Ski]

#1074130

Stress can be managed MANY ways, so pick the thing that works for you. Typically we advise people to do what feeds their soul and soothes them. For some, that’s a nice hot bath every night. For others, it’s watching something that makes you laugh uncontrollably. It can also be yoga, acupuncture, group therapy, tai chi ~ ANYTHING that works for you.

All of us have been afraid of weight gain. Please don’t let it stop you from getting treated. The weight loss we suffer when hyperthyroid actually leads to MORE weight gain on the other side, since we lose muscle mass. Do the best you can as you go through the process. NOT everyone gains weight. Well managed levels will NOT lead to an enormous weight gain. Some weight gain is normal, and needed, after being hyperthyroid. We gain back the muscle mass we lost.

It’s hard not to panic when we’re hyperthyroid. We may as well be MADE of panic at that point. Try to laugh about it, and put it behind you in favor of healing.

[nlldvs]

#1074131

I have a question for the person that siad they were hyper with GD and Gained weight. Because I too have gained weight. My doctoer said I have a mild case of Graves Disease. and I have gained about 15 pounds already. I am on Atenolol and Tapozole. I have read that both can make me gain weight also. How much weight did you gain? And were you able to lose it? And when your thyroid was normal again did that make it easier to lose the weight gained? I guess what I am asking is once everything is normal again will i naturally lose the weight I gained? I have always been a small person and I am short so weight gain even 15 pounds makes me look fat. I am really concerned with the weight gain. And I was sure I was hypo even when my dr. kept telling me I was hyper. The only sign of being hyper I have is the rapid heart rate. and also I have these really sharp stabbing pains in my head not in one particular spot but everywhere at different times. Sometimes the pain is lingering but still rather painful. Sometimes it feels like a vein had popped or something the the pain starts but not always. I told me dr. but I feel he kind of dismissed it. And he didn’t order a Ct scan or MRI. Is this too a part of Graves Dises the head pains? And back to the weight issue. I feel that no matter how well I eat and get my diet in check I will still gain weight. i say this because I have been drinking nothing but water for three weeks now. and eating salads and granola bars. But yet I gained another 4 pounds. So I feel eating healthy really isn’t going to stop the weight gain just the amount of weight gain. How can I keep my weight in control? and Not gainanymore. I have read several reports where people have said that while on Traozole that started at 120 but now weight 170. I don’t want that to be me. Any answeres would be truly aprechiated. Thanks. Noelle

[cwilson]

#1074132

Noelle,

You and I seem to be in the same mind set with the weight gain issue. I understand. I haven’t lost anything or gained anything yet but I have only been taking meds for about a week. When I went in for a pap about 3 weeks ago my doctor noticed. I had to stop last night when I broke out in a rash on the top half of my body. The thing is I feel fine even when I don’t take anything. I see a little bit of my goiter but other than that I feel fine. And so many people are telling me not to fret but it is really hard when you are a fit person like myself and someone tells you that you can maybe gain weight and everything I have read says that you will also. My husband tells me also, eat right and exercise and you should be fine, I think that helps but something happens when you go hypo that makes it so hard even if you do all the right things. I am so stressed out that I am not helping myself at all. I slept for the first time last night because I didn’t have to take the meds. The meds are causing me some mental agony and I think the only reason is because I am so afraid of becoming overweight. That has been my biggest fear my entire life. I have an appointment to see an acupuncturest in a couple of weeks. I am hoping that will help relax me. The thing is working out relaxes me but it isn’t enough. I totally broke down last night. I hope everything works out for you.
Take care,
Christa ” title=”Smile” />

[nlldvs]

#1074133

I am supposed to start taking 5 mg of Tapozole today. I have read these horror stories of how it causes unbearable joint pain. And it scares me. My husband too tells me to exercise more. And tells me not to worry about it so much. But again my main issue is gaining weight. But being I have mild Graves Disease I was wondering if after being on Tapozole for a while and my thyroid is normal again will I go hypo? My twin sister too has Graves disease. Diagnosed ten years ago. But she alos had the eye thing and they gave her Radiation treatments now she is permantly hypo for the rest of the life. I am already on beta blockers and they have caused a little weight gain already. And really I feel fine sence I been on the Atenolol. I wonder if I should even take the Tapozole. I feel better than I have in a while. I figured I could just minimized what I ate so I wouldn’tgain alot. But then I worry if I don’t eat regular meals then my metabolism wont stabilize either. So I am at a lose. None of my clothes fit anymore And it is driving me crazy. Thanks for responding to my comments. -Noelle

[cwilson]

#1074134

Noelle,

I had to stop last night taking the Methimazole. Brand name Tapozle(sp). I have broke out in hives pretty bad and my dr still hasn’t called me. I am with you I am also taking Atenolol and it has been nice knowing that my heart rate is stable but I am not sure about meds anymore. They are causing me so much stress that I can’t handle it. I was much happier before. I have been very moody. Everyone is so different with the weight gain. I have a cousin who also has Graves Disease. She was diagnoised when she was just a kid though. It started back up a couple of years ago when she got pregnant but hers went into remission and she has been fine since. She was taking cyndroyd(sp). She said she lost a lot of weight but once she started taking med she did gain some weight but when your a kid you are suppose to so who’s to say that she wasn’t just growing and getting the weight back she lost. She is not an overweight woman, average just like everyone else. The thing that gets me is that the percentage of people going hypo is high. Like one in five people after taking the meds have their thyroid return to normal and go into remission. Thats not good odds. I am trying to remain calm and put my faith in God and that has helped me some.
Christa

[nlldvs]

#1074135

Alot of people seem to be having the same reaction to the Tapazole as you have. I haven’t taken it yet. I’m starting to worry a little. how long were you on them before the reacction occured? The thing I am confused about is my dr. tells me my metabolism is extremely high. Well if that was the case wouldn’t I be loseing weight and not gaining weight? Who knows. I wish everything would go back to normal. Well hope all turns out okay for you. Take care. -N

[Ski]

#1074136

Some people do gain while hyperthyroid ~ there can be a number of reasons. One is that as you lose muscle mass, eating the same amount of food will make you gain because the muscle is no longer there to process the calories. I think there are other reasons that are not well understood, but I have known at least two people who gained while hyperthyroid, and almost weren’t diagnosed because of it. (You couldn’t be hyper, you’re gaining! ~ all to avoid one of the least expensive diagnostic tests there ARE.)

The meds can be discontinued if you have an adverse reaction. I don’t believe the reactions are very common. We just see a lot of people here who have had the reactions, because only people who are having trouble will seek help.

[nlldvs]

#1074137

The thing was that my eating habits didn’t change. I wasn’t eating more than I normally did to gain the weight. I actually don’t eat much. I have a breakfast shake in the mornings. Then granola bar as snack, salad and water for lunch. granola bar snack, then dinner. Even after the weight gain I ate the same just skipped the granola bars. My primary care dr. refused to believe anything was wrong with me. I went back numerous times. Explaining how tired I was and the weight gain. And she consistantly dismissed my concernes. Finally I called and demanded a TSH test. She gave me one the referred me to a Endo. My TSH was 0.0010 and my free T4 was 2.0. Both her and the Endo tell me I am hyperthyroid. Then the Uptake test and scans ultrasound was taken and he said I had mild Graves Disease. And for some reason people with Mild GD gain weight instead of losing weight. The question I have is once my levels are normal again will I lose the weight I gained? Will my metabolism be able to burn off that extra weight gained? Or will it be slow due to the meds. I have also heard that once on meds to slow everything down that I will probably turn Hypo, is this true? Thanks. -N

[cwilson]

#1074138

Noelle,

I have only been on the meds about 5 days. I stopped taking them and now my Dr. is telling me either deal or we have to do RAI and I refuse to do that. I am going to see if he can lower my dose or try a different med. I worry about the same thing, when my thyroid returns to normal will I return to normal. I don’t think anyone can ever know because everyones body is so different. I wish you the best of luck with everything.
Christa ” title=”Smile” />

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