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URGENT: Should I go through with RAI or stay hyperthyroid?
Hi all,
I'm scheduled to go through with RAI tx on Friday morning for Graves' disease/hyperthyroidism. I've had hyperthyroidism since I was about 16 (I'm 22 now) and it's been reasonably well controlled -- I've had a few tweaks in medications here and there, but I've never exceeded 20mg of methimazole per day; I just switched to 10mg per day last month, though I'm completely off medicine now as I await my RAI.
I'm just getting super nervous right now, and I'm not really getting any answers from my endocrinologist. I'm reading that I won't be able to eat a lot of different foods, like cruciferous veggies, strawberries, peaches, walnuts, peanuts, and so much more. I've also read that I need to drastically reduce my consumption of bananas, certain fibers (at least until 4 hours after medication), and the like. As a dairy-free person, I KNOW I will not be able to get enough calcium in my diet as a result of this, and I would really like to avoid supplements.
I do have a repaired atrial septal defect/repaired mitral valve, but my condition has been very well managed and my heart, by all accounts, is perfect. I'm going for a checkup with my cardiologist on Wednesday, too. I know hyperthyroidism can be dangerous in terms of racing heart, etc., but I really don't have those symptoms (if I do, it's incredibly rare and all of my doctors are immediately aware of it). I'm just wondering if staying hyperthyroidism may be a better option for me, considering that my levels are well-controlled and I'm feeling well as opposed to going into hypothyroidism and drastically having to change my diet?
I just put in a call to my primary care physician, so I'm hoping to hear back from him later tonight. Until then, advice would be greatly appreciated!! Thanks!
I'm scheduled to go through with RAI tx on Friday morning for Graves' disease/hyperthyroidism. I've had hyperthyroidism since I was about 16 (I'm 22 now) and it's been reasonably well controlled -- I've had a few tweaks in medications here and there, but I've never exceeded 20mg of methimazole per day; I just switched to 10mg per day last month, though I'm completely off medicine now as I await my RAI.
I'm just getting super nervous right now, and I'm not really getting any answers from my endocrinologist. I'm reading that I won't be able to eat a lot of different foods, like cruciferous veggies, strawberries, peaches, walnuts, peanuts, and so much more. I've also read that I need to drastically reduce my consumption of bananas, certain fibers (at least until 4 hours after medication), and the like. As a dairy-free person, I KNOW I will not be able to get enough calcium in my diet as a result of this, and I would really like to avoid supplements.
I do have a repaired atrial septal defect/repaired mitral valve, but my condition has been very well managed and my heart, by all accounts, is perfect. I'm going for a checkup with my cardiologist on Wednesday, too. I know hyperthyroidism can be dangerous in terms of racing heart, etc., but I really don't have those symptoms (if I do, it's incredibly rare and all of my doctors are immediately aware of it). I'm just wondering if staying hyperthyroidism may be a better option for me, considering that my levels are well-controlled and I'm feeling well as opposed to going into hypothyroidism and drastically having to change my diet?
I just put in a call to my primary care physician, so I'm hoping to hear back from him later tonight. Until then, advice would be greatly appreciated!! Thanks!
The "rule" as stated is to treat food as food and supplements as supplements. All milk is fortified with something, contains calcium, etc.
If you want to be conservative, fiber interferes most with absorption, protein least, so the veggie omelet would probably be a good choice. Most important of all is consistency. If you have the milk and cereal every day, as your PCP said, he can adjust your meds for whatever you do consistently.
If you want to be conservative, fiber interferes most with absorption, protein least, so the veggie omelet would probably be a good choice. Most important of all is consistency. If you have the milk and cereal every day, as your PCP said, he can adjust your meds for whatever you do consistently.
Thank you!! Your experiences have definitely made me feel more at ease about this whole thing (even if pre-procedure nerves are getting the best of me right now).
I've just read so many horror stories of people that have gained incredible amounts of weight, have high cholesterol, etc.
Also, I'm not sure if you'd know this (I'll ask my endo too if I see him today): once I'm done with this LID in a few days, I plan on switching to my "new" diet so that everything is consistent when I eventually go for blood work. However, because I'm dairy-free, I'll have to eat a lot of calcium-fortified foods (cereals, juices) in addition to my normal diet in order to get the nutrients I need. I'm also switching to almond milk, since I know soy is very harmful. But I know calcium supplements should be separated from synthroid by 4 hours. Should I treat those foods as supplements since they're fortified? As in, maybe I could have them for lunch and have something else -- like a veggie omelet -- for breakfast? I know calcium can mess up med absorption, so I'm not sure if I should have that much calcium with a morning meal (I'd only have the cereal in the morning; I'd have the juice later on in the day, because I know your body can't absorb too much calcium at once).
Once again, thanks for all your advice! I really appreciate it.
I've just read so many horror stories of people that have gained incredible amounts of weight, have high cholesterol, etc.
Also, I'm not sure if you'd know this (I'll ask my endo too if I see him today): once I'm done with this LID in a few days, I plan on switching to my "new" diet so that everything is consistent when I eventually go for blood work. However, because I'm dairy-free, I'll have to eat a lot of calcium-fortified foods (cereals, juices) in addition to my normal diet in order to get the nutrients I need. I'm also switching to almond milk, since I know soy is very harmful. But I know calcium supplements should be separated from synthroid by 4 hours. Should I treat those foods as supplements since they're fortified? As in, maybe I could have them for lunch and have something else -- like a veggie omelet -- for breakfast? I know calcium can mess up med absorption, so I'm not sure if I should have that much calcium with a morning meal (I'd only have the cereal in the morning; I'd have the juice later on in the day, because I know your body can't absorb too much calcium at once).
Once again, thanks for all your advice! I really appreciate it.
Best of luck tomorrow!
That kind of doctor is worth much more than his weight in gold. You'll do fine.
That kind of doctor is worth much more than his weight in gold. You'll do fine.
Once again, thanks for the info! I'll be sure to annoy my endo nonstop until he orders those tests; and if he doesn't do it, I'll go to my PCP. My PCP is a family friend (went to high school with my dad) and he totally listens to me when I say something is wrong (when most other people dismiss my complaints as anxiety). Granted, I DO have anxiety, but I can also differentiate and know when something is actually wrong. I'm feeling much better about the RAI now :)
The problem with thyroid treatment in this country is that many doctors stop treating too soon, leaving their patients still hypo (which I suspect your cousin still is). The patient pops back into range, and the doctor thinks his work is finished, even though the patient is still very symptomatic. Many only look at TSH (even when they order FT3 and FT4, they don't really pay attention to them), and TSH should never be used alone to adjust meds. It's a screening test at best.
Make sure your doctor orders FT3 and FT4 every time blood is drawn, and make sure he increases your dose until all hypo symptoms are gone. Rule of thumb target for FT4 is midrange and FT3 is upper third of range. This isn't for everyone; it's just a place to start until you find where you feel best.
Many doctors think FT3 is a waste of time (wrong), and the new AACE guidelines, unfortunately, support their position. Your PCP sounds great...if you work with him well, half the battle is finished.
Make sure your doctor orders FT3 and FT4 every time blood is drawn, and make sure he increases your dose until all hypo symptoms are gone. Rule of thumb target for FT4 is midrange and FT3 is upper third of range. This isn't for everyone; it's just a place to start until you find where you feel best.
Many doctors think FT3 is a waste of time (wrong), and the new AACE guidelines, unfortunately, support their position. Your PCP sounds great...if you work with him well, half the battle is finished.
Thanks for your reply! It's good to know you've been able to lose the weight. Again, because I have a heart issue, staying physically fit is a huge deal for me and I want to know that I'll be able to lose the weight. I still plan on eating whatever I like (including broccoli, spinach, etc.) and working out as I normally would, and just remaining super vigilant in terms of testing my blood every few months or so until I'm on the proper dosage. I was originally nervous because my cousin is hypothyroid and she gained a TON of weight and still hasn't lost all of it. Granted, I'm pretty sure I eat healthier than she does and I probably work out more, as well. I'm just getting super nervous to go through with this procedure because I'm hearing absolute horror stories of people that have this uncontrollable weight gain or osteoporosis or awful joint pain, etc. I already have an unstable ankle and very, very mild arthritis, so this scares me a lot too. But I'm hoping once I'm back to being euthyroid via medicines, I'll be okay. Thanks again!!
Thank you so much for your info - I'm so sorry to hear you've had to go through all that! I hope things continue to look up for you. As long as I gain muscle mass and not fat, I'm fine with that. The whole gaining far deal just isn't going to go well for be because of my heart issues, so hopefully it's pretty much all muscle mass for me. Though as long as I watch what I eat and exercise, I should still be okay even before my medication dosage is completely figured out, right?
Once again, thanks so much! Super helpful.
Once again, thanks so much! Super helpful.
I hit a thyroid storm before my medical issues where discovered. (kept getting told I was depressed) . I was down to 88 lbs despite eating like a horse. I did the RAI, BUT a month later I still hit another storm.
Surgery was finally done due to my weight (88 lbs). The thyroid storms mess up many of your organs.
After surgery YES I did gain weight, about 25 lbs. I also gained about 10lbs from the steroids after the RAI. But after a year of being on the correct dosage for me I was able to lose it by watching my diet. I was a health weight about 115-120 ; Now currently I am underweight despite my eating habits, i guess really not bad eating habits.
It takes a while to get you on your correct dosage, but you will get there. Also eating healthy & being active. But I won't lie, I don't excersice.
I am currently 5'3 and weigh 100 lbs. How ever I have a small body frame.
Surgery was finally done due to my weight (88 lbs). The thyroid storms mess up many of your organs.
After surgery YES I did gain weight, about 25 lbs. I also gained about 10lbs from the steroids after the RAI. But after a year of being on the correct dosage for me I was able to lose it by watching my diet. I was a health weight about 115-120 ; Now currently I am underweight despite my eating habits, i guess really not bad eating habits.
It takes a while to get you on your correct dosage, but you will get there. Also eating healthy & being active. But I won't lie, I don't excersice.
I am currently 5'3 and weigh 100 lbs. How ever I have a small body frame.
If I may ask either goolarra or totie:
Did either of you have weight issues either post-RAI or when you went hypothyroid? I'm not asking this out of vanity; rather, I'm asking because I'm currently very physically fit and would like to remain as such. I don't mind gaining weight in terms of muscle mass, but I want to avoid gaining fat because of my heart issues. I want to stay heart healthy, and remaining thin is one of the best ways to do that.
I do eat extremely healthy and work out every day (although with less intensity now as I'm recovering from ankle surgery). Any tips or advice would be greatly appreciated. Thanks again!!
Did either of you have weight issues either post-RAI or when you went hypothyroid? I'm not asking this out of vanity; rather, I'm asking because I'm currently very physically fit and would like to remain as such. I don't mind gaining weight in terms of muscle mass, but I want to avoid gaining fat because of my heart issues. I want to stay heart healthy, and remaining thin is one of the best ways to do that.
I do eat extremely healthy and work out every day (although with less intensity now as I'm recovering from ankle surgery). Any tips or advice would be greatly appreciated. Thanks again!!
Your PCP sounds like my kind of doctor! There are all kinds of theories out there about which foods, food groups to avoid, almost all of which are just that...theories. My endo feels the same way your PCP does...do what you want, and if you have to take a little more meds because of that, so what?
For example, you're not supposed to eat or drink anything for half to one hour after meds, which should be taken on an empty stomach...first thing in the morning for most of us. Well, I WANT my coffee a lot sooner than half to one hour after I get up. So, I take my thyroid meds with water and immediately chase it with a cup of coffee. Does it impact absorption of the meds? I don't know, but I'm going to be dealing with this disease for the rest of my life, so we have to learn to live with each other.
Being hypo has its challenges, no two ways about that. After RAI, it will take some time for your thyroid to die off, and you will have to start replacement meds eventually. Finding the proper dose of meds can be a challenge, and the post-RAI road will probably have a few bumps in it. Having a good doctor helps so much. If you can work well with yours, it'll help speed up the process.
Good luck with the RAI if you decide to go through with it. Come back and see us when you're hypo!
For example, you're not supposed to eat or drink anything for half to one hour after meds, which should be taken on an empty stomach...first thing in the morning for most of us. Well, I WANT my coffee a lot sooner than half to one hour after I get up. So, I take my thyroid meds with water and immediately chase it with a cup of coffee. Does it impact absorption of the meds? I don't know, but I'm going to be dealing with this disease for the rest of my life, so we have to learn to live with each other.
Being hypo has its challenges, no two ways about that. After RAI, it will take some time for your thyroid to die off, and you will have to start replacement meds eventually. Finding the proper dose of meds can be a challenge, and the post-RAI road will probably have a few bumps in it. Having a good doctor helps so much. If you can work well with yours, it'll help speed up the process.
Good luck with the RAI if you decide to go through with it. Come back and see us when you're hypo!
I had the RAI treatment & I was never told what & what not to eat.
That was 19yrs ago....I have always eaten what I wanted. No food issues, however, I am lactose intolerant, but have always been.
That was 19yrs ago....I have always eaten what I wanted. No food issues, however, I am lactose intolerant, but have always been.
UPDATE: I just spoke with my PCP (and, granted, endocrinology is not his specialty), but he said that he's never heard of anyone having to radically alter their diets for hypothyroidism. Rather, he would adjust the dosage of the medication to fit my lifestyle. So, I still can eat all the foods I listed above and I may just have a slightly higher dosage of medication. He said that, much like people that are on anti-coagulant medications, he advises them to NOT change their diets and instead he adjusts the dosage of their medications to fit their lifestyles.
Much like what you said, goolarra :) thanks for the info! Also, in response to your question: I've been considering RAI for some time now, but I've had to postpone it several times because of ankle surgeries or CT scans with iodine, etc. I recently had a CT scan (in early November) on my ankle, but it was without contrast so I was told that wouldn't be a problem.
Much like what you said, goolarra :) thanks for the info! Also, in response to your question: I've been considering RAI for some time now, but I've had to postpone it several times because of ankle surgeries or CT scans with iodine, etc. I recently had a CT scan (in early November) on my ankle, but it was without contrast so I was told that wouldn't be a problem.
Since you've been hyper for a while and it seems very well under control with meds, why are you and your doctor considering RAI now?
Of course, once you have RAI, you will be hypo and on replacement meds for the resto of your life. Many of us who are hypo have found we don't have to change our diets in the slightest. I eat all the foods you list. Fiber only has to be avoided for half to one hour after meds (supplements and other meds should be separated by four).
Of course, once you have RAI, you will be hypo and on replacement meds for the resto of your life. Many of us who are hypo have found we don't have to change our diets in the slightest. I eat all the foods you list. Fiber only has to be avoided for half to one hour after meds (supplements and other meds should be separated by four).
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I'd be lying if I told you that it will be easy to maintain your weight until your meds are adjusted properly. When hypo, many people (not all) find it almost impossible to maintain or lose weight. The process of adjusting meds can be lengthy. It took me over a year to get to a therapeutic dose. I have a heart arrhythmia, and the thyroid meds exacerbated that, so i had to increase meds VERY slowly.
However, that done, I have been able to maintain my weight on meds much better than I was able to all my life. I have had steady weight for several years now...for the first time in my life.