[sickofgraves]

in reply to: Symptoms back after 2 years in remission :( #1063935

Hi! I haven’t posted in quite a long time. I also have had GD for many years and had a bad come down from a 7 year remission. But, with the help of knowledgable people like James, I have been able to not do RAI and have been back in remission for almost a year now. Don’t get me wrong…it’s like a job…keeping my diet together and my stress levels intact. I am like my own little ‘project’. Luckily I started with a pretty ‘fit’ lifestyle. The hardest part for me is staying off seafood. I live near the Northern California Coast and love salmon.

I have many ‘Gravesy’ times and I recognize them right away. I immediately go right into PREVENTION mode. Mega watch what I am eating. Exercise more (yoga is a nice attitude adjuster). Drink decaffinated beverages and put a ‘watch’ on my occasional glass of wine. I recently got my eyes checked and it’s looking good! I do take 5 mcg. of levythoroxine, because I now tend towards hypo. I did gain 10 lbs. in one month and luckily I started off pretty light and have been able to keep those nagging 10 lbs.in check. Feel free to write me here if you want some support. I am REALLY glad I didn’t do RAI!

I am semi-considering going to the conference. I need to be in SD that next weekend, so…hmm. Thanks again James! You maybe remember me and you really helped me out.

[sickofgraves]

in reply to: RAI or NO…What is Your Opinion!!…HELP! #1070820

Hi Susan, I am with you! It’s been almost a month back on Tapazole and I am feeling better already. It’ll be a long haul again, but I would rather do this than RAI for now. XO

[sickofgraves]

in reply to: NAME THOSE FOODS…The Good/The Bad/And The Maybe #1070174

I was just checking the Almond milk box and there’s not any calcium invloved. I take a supplement called Bone-Up by Jarrow Formulas. It has no gluten, dairy, egg, fish/shellfish or nuts in it.

[sickofgraves]

in reply to: NAME THOSE FOODS…The Good/The Bad/And The Maybe #1070172

Apparently soy is also on the no-no list (although, I imagine soy in moderation might be okay). I am a cereal girl as well and don’t like cow’s milk anyway (half and half in coffee only), so I use Pacific Natural Foods Almond Milk (low-fat regular…not vanilla). You can get it at Trader Joes, if you are lucky enough to have one (I am not). Probably any natural food store carries it. Shake it well. As long as we are on the subject…I eat Nature’s Path Organic Heritage whole grain cereal. It’s really good. It’s a flake cereal with lots of flavor and crunch and doesn’t taste like wood. Hope this helped.

[sickofgraves]

in reply to: NAME THOSE FOODS…The Good/The Bad/And The Maybe #1070169

Thank you! Ironically, maybe the reason I came out of an eight year remission is because I got a rice cooker for Christmas and went sushi crazy. I just adore the stuff. I really didn’t have a clue that it might knock me back into GD. Also, I started taking this stuff called Flexicose for my joints, which is from a shellfish derivitive. Go figure. Won’t let that happen again.

Probably my hardest things are my half decaf in the morning, chocolate, a glass of wine now and then, fish and occasional dairy. I do find that like all sort of allergy things, if you load them up, they attack you, but if you are careful to not eat them all together, you can sometimes get away with it. I am just concerned that I might blow-it and eat the wrong foods unknowingly, like I did with the sushi.

[sickofgraves]

in reply to: NAME THOSE FOODS…The Good/The Bad/And The Maybe #1070167

Thanks, I appreciate your post. I guess what I am hoping for as well, is a list of foods that NGDF forum contributors eat, don’t eat and eat in moderation. Just for a reference. My doctor knows nothing. He’s a GP and is treating me based on what I ask of him and his general knowledge. Don’t get me wrong..he’s a good doctor, but there is no Endo within 150 miles of me. It’s me and this computer doing the research.

[sickofgraves]

in reply to: radioactive iodine treatment #1070977

After over 8 years in remission I became hyperthyroid again. My first inclination was to get RAI….and FAST. But, the wheels in my small rural town turn ever so slowly and in the one month that I waited to even get my uptake, I researched like you wouldn’t believe. The result was to go back on Tapazole and become more aware of my diet and lifestyle. I am hoping to go back into remission again and when I do, be WAY more involved with keeping a GD diet. Good luck with whatever you choose, but I encourage you to check out all sources of information. RAI just wasn’t for me.

[sickofgraves]

in reply to: Joint Pain??? #1074573

I have joint pain and had it as soon I came out of an 8 year GD remission. The way it manifests is soreness after relaxing…as in first thing in the morning as I get out of bed and any other time I am just sitting or reclining for a long period. When I get up in the morning even my feet are sore. I also have shoulder aches like never before. I am an active 5’6" 122lbs. So, it’s not like I am holding any extra weight. It’s a mystery to me.

I am two weeks into Tapazole and I must admit it’s getting less painful. I am trying to be good to my body and not work it too hard and also am soaking more and getting a massage when I can. For me, I am just doing the best I can. It’s a real one day at a time and no two days are ever alike. It is getting better though.

[sickofgraves]

in reply to: Decided against RAI and doing Tapazole…I need diet help #1070358

Hi and Thanks!!!! I am trying to be good…okay, I made a couple sushi rolls tonight…homemade smoked tuna and tofu (not together). It’ll take time. I am not a milk drinker…never was. I have half and half in my coffee (mostly decaf now) and that’s it. I favor almond milk (unsweetened) and sesame milk. Both have calcium…especially sesame. I normally eat a pretty whole grain diet and not too much meat. The seafood thing is a little confusing. I will check the thyroid cancer assoc. website. Thanks for your support. I am determined. How long have you known you’ve had GD? Was RAI recommended to you as well?

[sickofgraves]

in reply to: RAI or NO…What is Your Opinion!!…HELP! #1070818

Hi Valerie and thanks for the great letter. I live in a small rural California town, and my small town doctor is now treating my thyroid. So, I really don’t have a specialist (the nearest Endo is about 3 hours from me), and maybe all the waiting I did to have my planned RAI gave me the opportunity to really research all the options, which lead me to my decison to not get RAI.

Since I was before on Tapozole and it did put my GD into an 8 year remission, maybe the second go around I’ll be more careful with what I eat and drink and watch myself a little mpore closely. I am feeling better now…more balanced and not so many of the stressful symptoms. I have got to agree with you when you write about hyer maybe being easier to deal with than hypo. When I was hypo, I was such a slug. Now I am trying to balance it all out. I am active and I eat like a horse, and if hypo I would probably weigh 100 pounds more than I do.

I really couldn’t have done it without E-mails from a certain wonderful person who helped me along the way. She’s the one who ponted out the NGDF to me. Anyway, whatever choice we choose in this, we have to deal with the comes what may of it all. I am 52 by the way, but have probably been hyper for 20 years. Take care and thanks again!!

[sickofgraves]

in reply to: RAI or NO…What is Your Opinion!!…HELP! #1070816

Just an update…I had an appt. withe the Radiologist and although he thought me to be a good candidate for RAI, he supported my desire to see if I could try to put my GD back into remission and so I am on 10mg Tapozole twice a day for a month and then another blood test and then an adjustment if needed, etc. etc.

I am still on beta blockers for awhile and I am more careful about what I am eating. Trying to eat the right amount of iodine in my daily diet and cutting down dramatically on unhealthy foods and alcohol and caffeine. I quit having the bad symptoms a couple weeks ago, probably courtesy of the beta blockers, but i sure don’t miss them!!!!!! I have started to gain a little weight, but at this point, that’s a good thing. I really appreciate this website and most certainly will contribute.

[sickofgraves]

in reply to: Wouldn’t it be cool if….. #1070479

Rhonda, I am with you on that one. I found a website that has so much info on GD and links for the testing kits. http://www.moondragon.org/health/disorders/hyperthyroid

[sickofgraves]

in reply to: Thyroid Uptake Results…What Were Yours? #1070689

Thanks Nancy. I E-mailed you.

[sickofgraves]

in reply to: Thyroid Uptake Results…What Were Yours? #1070687

Yep, I’ve hear of those really high numbers. I am going to try and do Tapozole again and stay on a better diet. What’s your diet like now?

[sickofgraves]

in reply to: Who Has Had RAI Once With Great Long Lasting Results #1070795

Thanks for that post. I am going to get my uptake today to see where my thyroid is at. I don’t have an eye problem…yet, or Thyroid Storm. A new friend counseled me that you can see if the GD goes into remission by altenative methods like meds, diet, exercise and changing stressful patterns, but once you do RAI, you can’t go back. Post RAI sounds pretty radical. Also, I have read about struggling with weight post RAI. How are you with that? That can be stressful all on it’s own. Well, I better go off to the hospital for the uptake. Thanks again!

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