[sickofgraves]

#1019317

I really could use some experienced opinions, please! I have had GD for a long time. My story in a nutshell; I (female, 52) was diagnosed over 10 years ago, did 2 years of Tapozole, became normal for a little while, went into a small degree of hypo, did a light dose of synthetic thyroid for a couple years. And a few months ago started to feel that familiar ‘weird’ feeling. Heart flutters, sweaty all the time, muscle weakness, anxiety, shakes, losing weight. Got a blood test which confirmed GD again. Got on a beta blocker and my symptoms are much better. I live in a rural small town where the wheels turn slow enough to give me some time to think about what to do. RAI is the popular solution…for now. My Drs. are worried about me getting this again in another 10 years and what it would do to my heart.

There are many well versed in GD folks that are encouraging me to treat it dietarily and try to get it into remission again. There are things said to me about RAI like; Cancer to other organs via the radiation, obesity (I can’t imagine that, but you never know), heart problems, Thyroid Storm after the RAI. Truthfully, I lean towards RAI, but I am open to all suggestions while I am waiting. My scan is Thursday, my consultation next week and probably the RAI scheduled shortly after that.

I would be oh so grateful if anybody would give me advice, encouragement, discouragement, knowledge, anything that would help me make an educated decision. Thank you so much in advance!!!!

[mamabear]

#1070801

Welcome glad you found us!

So were you in remission most of that time? You said you were on tap for a couple years then fine for a while then did a couple of years of thyroid. So were you considered euthyroid/remission during the rest of the time?

I say if you did fine and were in remission a long time then try the Tapazole again. You just started to feel Weird and were able to catch it before it got bad.
Watching your diet is always key, if you eat a lot while Hyper you tend to keep eating like that once you start taking meds or have RAI thus weight gain starts.

Its really your choice. Some will say do the RAI it worked great for them, I think it’s about 2 weeks after the RAI that the body dumps the rest of the hormones and that is what you are saying about the thyroid storm. It’s the body getting rid of the rest of it so it feels really bad. Again something you would go over with your dr.. After the RAI most likely you will become hypo and need replacement thyroid for the rest of your life again something you would talk over with dr.

Tapazole you can try again and see if it’s tweeked enough to help your levels and put you back into remission.

Personally… I opted for PTU(same as Tapazole but I was trying to get pregnant so I did PTU), I did well on it and wound up pregnant went off meds and was fine and even got pregnant again with 3rd child(1st child was at a younger age and I didnt have GD). after 3rd was born i got a virus that kicked me back into Graves again and had to go on meds. Did meds and again did well, went off and although mylevels have dipped a bit here and there I am in remission two years now without any meds. If i go out again I’ll do it again with meds since it seems work. If my thyroid finally konks out on me then I’ll worry about replacement thyroid but for now this is doing just fine. I know my symptoms and go with the flow when need be.

If it got so bad where meds didn’t work and i was in danger i’d opt for the RAI but again it’s up to the individual person and what is going on their life at that moment.

I’m sure you will hear stories from everyone. Good luck in your decision and keep us informed! Ask questions when you need to.

[powergrrrl29]

#1070802

I was diagnosed with Graves in December and have been on PTU for 3 months and I feel great. If I end up having 8 years in remission which it looks like you had, I would definitely do the drug route again. As far as your doctor’s comments about your heart….I wouldn’t worry about it. As long as you monitor your resting heart rate and can note a change and get to the doctor who can do labs and put you on beta blockers right away then I really don’t see how that’s going to hurt you.
I guess my feeling is that you know the drugs work for you. With RAI you don’t know how it’s going to work for you and you’ll probably end up hypo and have to take thyroid drugs for life. I don’t think titrating drugs for hypothyroidism is any easier (probably it’s harder) than titrating the drugs for hyperthyroidism.

[sickofgraves]

#1070803

Wow, Thanks so much for all! I don’t know why, but I had never heard of PTU before this forum. Seems strange. I have heard of Methamozole and I took Tapozole. I am now more and more convinced to NOT do RAI. I am on beta blockers now that mask my symptoms, so it’s easier to be so positive.

One thing that has happened since I became hyper again is this strange muscle and joint soreness, especially when I have been sitting for awhile and also when I get up in the morning. It’s hard to get up from the floor. Once I get up and move around I feel fine. I am a very active 52 year old and this makes me feel 100. Does anyone else have that symptom?

What is a drag for me is that I live so rurally that there is not an internal medicine doctor to be found. My original one only does arthritis now and his partner passed away earlier this year. My family practitioner and my Gyno have been my only sounding board. Now I have all you and that’s a relief.

Anymore info would be appreciated…especially on this PTU and soreness. Thanks!

[ely2009]

#1070804

I too have soreness and stiffness – so much that a couple of times I heard myself "groan" as I got up from the floor. I know what you mean about feeling 100 – I’m only 36. i don’t know if it’s the meds (I’m on methimazole and weaning off my beta blocker) or the GD itself.

Glad you’re here. It’s been very useful to me to read this board and the people here are sympathetic and knowledgeable.

Good luck,
Emily

[sickofgraves]

#1070805

Thanks Emily. I am glad to find all this support. I am just a little worried about my future with GD and whether the RAI will give me a better chance of ‘quality of life’ or not. Lately I am thinking not, by what so many folks have posted on this website and others. I just don’t know enough about either decision and there is way too much info. Sometimes the internet can be just too much information.

When did your soreness start? Do you have the sore stiff feet when you get out of bed in the morning? XO

[ewmb]

#1070806

I have had fibromyalgia for 14 years and Graves for two. Just had the RAI about 3 weeks ago. I have already noticed a change in how stiff and sore I am overall. It is better. I think it was the same when my TSH was up on the methimazole. I am really out of shape and exercising is hard right now and I get stiff and sore from that but recover in a day or so. I hope that the fibromyalgia is related to my thyroid imbalance and that when that’s on track I won’t be so sore and stiff sometimes. I am also very sure that I could be called a human barometer sometimes. I can feel the changes in the air pressure before the weather man can say the barometer is falling. If it gets below 30.0 I really do start to feel worse. It’s bad with summer thunderstorms popping up. I also noticed a big change in my muscles not feeling so weak when I got to a correct dosage of VItamin D. Your doctor can do a check for you. I take 2000 iu of D3 now and it has really helped that.

I also found out right before the RAI that I have developed osteoporosis in my spine already at age 45. The endo told me that the only way to stop the damage from the Graves on my bones was to make sure that I didn’t go hyper any more. I will have to deal with this once my tsh and free T-4 are in normal range. My family is full of thyroid problems and my Dad who is in his late 70’s had a cousin die of complications from Graves. Granted she probably suffered more than some would now if she had gotten treatment earlier in life, but it was only in the last 15 years that she died.

Hope that you start to feel better soon. I had to decide about the treatment options with regard to my family as well as my own personal feelings. I have a special needs child. It has been really hard to have them go through this with me, not that they can’t handle it, but being able to hope that with RAI it will become a simple part of my daily routine to take care of and not impact things so helter skelter sounded really good. The anti-thyroid meds did make my blood levels more normal but I never really felt "good" the whole time I was on them.

I remember what one of the facilitators said in one of the first posts that I read; most people who are not having problems with their Graves right now are not the people that you hear from on this bulletin board. I am glad to have this help and support but my goal is to not need it in a few months.

ewmb

[sickofgraves]

#1070807

Thank for that reply. One of the things that I have heard a lot is that RAI is not a one shot deal and that you have incredible ups and downs for months after you get it. I wish there was a magic ball out there. I don’t want osteo if I don’t get RAI and I don’t want RAI more than once…I think. Were you on Beta blockers? Some folks have recommended to me to take the meds and get a script for a low dose beta blocker that you take as needed. All these things..Yikes

[sickofgraves]

#1070808

If there is any humor in this, it’s that every post where RAI sounds promising I get a surge of YAY, I’ll Do It! And, every time I see a post or article against it I automatically think…No Way!

[mamabear]

#1070809

You would not have been given PTU unless you were trying to get pregnant or nursing a baby. My dr. wanted me to go on Tap when I had my 4th child and I was in need of going on meds again to put Graves’ back in it’s place ” title=”Wink” /> He said "I wont give you PTU only Tapazole! There is no need for you to have more kids you’re 32 and have 4 already why have more!" I was livid to say the least ! Let’s just say i didn’t see him again, I went on the PTU, wound up with good levels again and went off of it and have been fine since. Again I am one of the lucky ones.

Tapazole has it’s side effects but if it worked for you before there is no reason not to try it again, at least to see if it makes you feel better Then when you have a clear head and have done your research you can always stop the Tapazole so you can do RAI if that is what you choose.

You are ONLY 52 that is young in my book since my mom is ONLY 54 and I’m 35 (disclaimer… Please don’t feel old thinking you could have a kid my age.. yeah sure ya can if ya got pregnant at 16 and had a kid at 17 and than again at 17 and had another at 18…yes mom had two little ones by the age of 18) lol

My mom was diagnosed with Crohn’s disease last year. This is a woman who is 5’2" tall and works out for two hours a day. Thank God she was as fit as fit can be or else we could have lost her to that disease. Flexable is what she is all about. Me on the other hand well no way! lol
Stiff and soar I have to say is what I felt when I was out of remission but I don’t work out now either and I am stiff and soar and in remission for two years so there is no excuse except that I don’t exercise. People look at me and say oh wow you should be so fit and flexable since you have 4 kids (3 are little) and I say nope i’m not I dont exercise at all and I should and even though you chase little ones that doesn’t mean you are fit. lol

You should speak to dr. about any exercise you want to start or any that you are currently doing. Due to your pulse rate and blood pressure and all of that good stuff you should make sure you are cleared to work out or do any form of exercise.

I remember that stiffness was worse when I was not in remission and yes it stinks. Hugs to you!

[sickofgraves]

#1070810

Thanks Mamabear. I am a grandma. Two grandsons and I am majorly hands on. My 5 year old grandson gives me a pillow to sit on so I can build a train track with him on the floor…really dear. I have a 30 year old and a 26 year old.

I do exercise everyday in the form of walking. 30-45 minutes on land or a treadmill. I wish I had a doctor. I can’t believe that there is not one within 100 miles of me that specializes in my problem. Bites. I’ll just keep plugging along with this forum and I do get my uptake scan Thursday, so we’ll see what those results look like. What have you read about long term Graves and osteo…? It’s the latest concern on my list. Sounds like you have your hands full. Thanks for taking the time out to help me.

Oh ya, here’s a question…How do you know day to day or week to week how much iodine to allow in your diet if you don’t really know if it’s in remission or not?

[ewmb]

#1070811

Hi,
You asked me about beta blockers. I resisted these as long as I could. I was only on it for about a month right before and after my RAI. The beta blocker made me feel really groggy and when I took a whole tablet my legs/shins ached. The pharmacist said that was a side effect. The beta blocker made me feel like I was moving in slow motion sometimes. It did lower my heart rate and kept me from going up really high when I actually went to the hospital to have the RAI. When I got off the beta blocker it took me a few days but my cotton head went away. My heart rate has gone to a more steady pace/ no palpitations and my pulse is a lot lower too. My BP is now very normal after only three weeks out from RAI. I hope that this continues to be the case. It is a hard decision. I am by no means a person who gives up easily but this disease made me realize that getting back to normal even if it’s a new normal was very important for me. I couldn’t handle the idea of any more time missing my life and my kids lives, work, vacations etc. when there was a choice that might stop that. I know that going through the changes that are coming won’t be easy sometimes but hopefully they won’t be as adverse as the hyperthyroidism was.

Keep on thinking. For me the education that I gleaned information from was what kept me going sometimes.

ewmb

[ely2009]

#1070812

My feet do hurt some. i never thought much of it before because my whole body aches sometimes. I’m just inside the "normal" range for my TSH and am weaning off beta-blockers so I’m hoping that I’ll feel even better soon.

So much to learn. ” title=”Smile” />

Emily

[Ski]

#1070813

This is the single hardest decision we face, I believe ~ which treatment is right for us? We would presume it’s always better to keep our organs intact, but when we have trouble making it "behave," well, then we start to consider other options.

Let me just say that I know many, many Graves’ patients. I know patients who have chosen all of the three options (not all of them for themselves, of course! ” title=”Very Happy” />), and I know people from each camp who are happy, and people from each camp who have had issues. It is literally impossible for someone else to make the decision for you.

All the treatments work. All of them have their own pros and cons. The meds can cause liver failure. The RAI comes with radiation exposure. The surgery can result in parathyroid damage, vocal cord paralysis or destruction. The meds do not cause liver failure very often. The RAI has extremely limited radiation exposure. The surgery, in the hands of an experienced surgeon, is usually very safe.

I completely understand your yo-yo feelings here ~ YES, NO, MAYBE ~ OH, just make me well!!! ” title=”Very Happy” />

The most important thing is that you feel comfortable with your decision, so just do as you are doing, learn all you can about all the treatments, and balance that with the way you feel.

My choice was RAI. I ended up needing two treatments, because the dosing doctor did NOT talk with my endo ahead of time, and tried to "low-dose" me, which has since been pretty much discredited as a valid choice. Had he spoken with my endo (or me, for that matter) prior to choosing the dose, it would have been a one-time thing, because we would have told him that we were aiming for complete ablation. Still, I am now feeling good, have my energy back, and sometimes I even forget I have Graves’. Wow, right? ” title=”Very Happy” />

You can get to this point by any of the three means of treatment. I understand we all have some visceral responses to one or another (for me it was the meds), and that should definitely be taken into consideration! If we don’t like it on some level, there ARE other choices we can make.

[sickofgraves]

#1070814

Thanks so much for all the responses. I am, at least today, leaning towards going back on Tapozole and following a more thyroid specific diet. In all the forums and websites and letters that I have researched and/or received, RAI really got a bad rap. And, many of the correspondances I received were from experts in the field. I was surprised…and really hoping that RAI would be my ‘Knight in shining armour’, that would take me back to a healthy place. But, I think I am going to go with thyroid meds for awhile and my beta blockers and try some natural approaches like accupuncture and stress release, like yoga and meditation. At least for now.

Meanwhile, tomorrow is my scan and the results of that may change my mind…but probably not. I have spent this month waiting for a therapy and I guess in the wait, found out something that I wasn’t expecting. I wish there was an Endo within 100 miles of me. I live in Northern California…200 miles north of San Francisco. If any of you out there know of a good Endo, please pass it along.

I’ll keep checking and posting. Thanks again!

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