I originally joined in 2008, lost my user name and rejoined in 2011. You all were amazing support when I got the LC diagnosis and were tremendous walking me through a very tough time. My LC went into remission in 2010 but then I began having other problems, that while not Celiac, were resolved when I removed all gluten from my diet. I did that because of you all here. I would have had no idea had I counted on my Gastroenterologist. But then again, she's the one who told me that my symptoms were actually a problem with my gallbladder, which was then erroneously removed, before her receptionist called and told me "And the tests also say you have something called Lymphocytic Colitis."
I'm back now because yesterday I learned that I have Grave's disease. My TSH is undetectable and the T3 and T4 are significantly elevated. The antibodies test came back to indicate Graves. The only thing I haven't done is the Iodine uptake test. I can't take that because a month ago, I was given a CT with (Iodine contrast) and as a result shipped for emergency surgery for a ruptured appendix (has been a rough coupla months lol) But because of the iodine contrast they can't do the iodine uptake test apparently
I believe that this whole mess started as a result of taking Carbamizapine and Zoloft for 8 years for a condition I never had. Tegretol and Zoloft, I believe, have been implicated as a causing drug induced MC.
So if I'm correct, because I took Tegretol and zoloft, I got LC. Now that I have one autoimmune disease, I now have a predisposition to autoimmune diseases and therefore I now have Grave's Disease.
Am I totally off base with that assumption? Also anyone else with Grave's, any input on how to deal with this new diagnosis would be greatly appreciated.
I think I'm just scared and this is the place that brought me the most comfort through this whole mess. Thank you for being there for me when I most needed it.
It's official. And the winner is...Grave's Disease
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Anti,
I'm sorry that you have developed another autoimmune issue, but welcome back. IMO, your analysis of the issues leading up to the onset of MC are probably right on target. For more than a few of us, our MC has iatrogenic origins, unfortunately.
To deal with Graves disease, you will probably need to be treated by an ENT, because you are producing too much thyroid hormone (so you can't just take a supplement, the way most of us here do). Most of us who have thyroid problems are hypothyroid (which means that we don't produce enough thyroid hormone). People who have MC are 7 times as likely as someone in the general population to develop thyroid problems.
An ENT can prescribe a drug that will suppress your thyroid production, but using a drug to regulate it can sometimes be kind of tricky. The other option is to surgically remove all or part of your thyroid. Surgery usually requires that afterward, you would need to take a thyroid hormone supplement.
Good luck with your treatment, whichever way you choose to proceed.
Tex
I'm sorry that you have developed another autoimmune issue, but welcome back. IMO, your analysis of the issues leading up to the onset of MC are probably right on target. For more than a few of us, our MC has iatrogenic origins, unfortunately.
To deal with Graves disease, you will probably need to be treated by an ENT, because you are producing too much thyroid hormone (so you can't just take a supplement, the way most of us here do). Most of us who have thyroid problems are hypothyroid (which means that we don't produce enough thyroid hormone). People who have MC are 7 times as likely as someone in the general population to develop thyroid problems.
An ENT can prescribe a drug that will suppress your thyroid production, but using a drug to regulate it can sometimes be kind of tricky. The other option is to surgically remove all or part of your thyroid. Surgery usually requires that afterward, you would need to take a thyroid hormone supplement.
Good luck with your treatment, whichever way you choose to proceed.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Anti,
I have a similar story with developing Graves disease about a year after being diagnosed with LC. Tex didn't mention the third way to treat Graves Disease, which is by radiation ablation. You are given a pill of radioactive iodine which then is targeted to your thyroid and destroys most of it. This generally leaves you hypothyroid, and you will need to take thyroid medication the rest of your life. This is the route I took two years ago because treatment with the medication can be quite difficult, as your thyroid varies a lot over time with how much thyroid hormone it's making, and the the drug needs to be monitored closely. The radiation ablation is probably the most popular solution. I had very good results from it, and am now pretty well stabilized. However, you have the complication of having taken some iodine for the imaging studies, so I don't know if that might interfere with the radioactive iodine ablation and if you would have to wait more time for the iodine you were given to leave your body..... There are a few other of us on the Forum who have had Graves Disease, so perhaps they will see this and weigh in on what worked for them.
Rosie
I have a similar story with developing Graves disease about a year after being diagnosed with LC. Tex didn't mention the third way to treat Graves Disease, which is by radiation ablation. You are given a pill of radioactive iodine which then is targeted to your thyroid and destroys most of it. This generally leaves you hypothyroid, and you will need to take thyroid medication the rest of your life. This is the route I took two years ago because treatment with the medication can be quite difficult, as your thyroid varies a lot over time with how much thyroid hormone it's making, and the the drug needs to be monitored closely. The radiation ablation is probably the most popular solution. I had very good results from it, and am now pretty well stabilized. However, you have the complication of having taken some iodine for the imaging studies, so I don't know if that might interfere with the radioactive iodine ablation and if you would have to wait more time for the iodine you were given to leave your body..... There are a few other of us on the Forum who have had Graves Disease, so perhaps they will see this and weigh in on what worked for them.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Thank you all so much for your kind words, information and suggestions. It appears that my endo wants to start me on antithyroid meds. On one hand, if the possibility exists that I can go into remission this is the only real way to give me that chance as the other two methods are permanent. There are some potentially serious side effects so that is concerning, but it appears none of the 3 options are ideal. Additionally, as is no surprise, I'm also lactose intolerant and the safest of the two antithyroid meds contains a lactose filler. Why would they do that?!?!
If I can tolerate the drugs I will be on for 6 mo to 18 mo or so with the hope that this goes into remission. If that doesn't work then ablation is in my future. Apparently in the US ablation is the preferred method but elsewhere in the world surgery is. I've tried to find out why this is since there isn't a world "standard" and it is concerning as to why some pick one over the other. Reading that I've done suggests that for example in placed that have seen the damage that radiation can do, Chernobyl, Japan, the suggested method is surgery. However, everything I've seen here in the states claims there is no damage from the radioactive iodine (ablation).
To be candid this is not a choice I want to make.
Thank you again for your support. This is a very special site.
If I can tolerate the drugs I will be on for 6 mo to 18 mo or so with the hope that this goes into remission. If that doesn't work then ablation is in my future. Apparently in the US ablation is the preferred method but elsewhere in the world surgery is. I've tried to find out why this is since there isn't a world "standard" and it is concerning as to why some pick one over the other. Reading that I've done suggests that for example in placed that have seen the damage that radiation can do, Chernobyl, Japan, the suggested method is surgery. However, everything I've seen here in the states claims there is no damage from the radioactive iodine (ablation).
To be candid this is not a choice I want to make.
Thank you again for your support. This is a very special site.
I was diagnosed with Graves Disease a few years ago, too so I added whacky thyroid to my list of "rare" diseases, like CC. While most others have a thyroid that is too slow, mine was too active -- go figure. But in all honestly I think my thyroid spent many years plugging along sluggishly, staying just below the radar of what the medical industry considered "normal", and then one day it went "kaplooey" (my doctor's terminology) and started racing.
I was put on an anti-thyroid drug and it took several months to find the right dosage but once we did, I felt TERRIFIC! And the even better news is that we then started weaning me off and I am now in total remission with no thyroid meds whatsoever.
So yes, it is possible, and you definitely have reason to hope that this, too, shall pass. I am aware of the fact that my thyroid can go bad again at any time, but at least now I know the symptoms and warning signs and will nip it in the bud rather than suffer with it for so long.
Good luck!
I was put on an anti-thyroid drug and it took several months to find the right dosage but once we did, I felt TERRIFIC! And the even better news is that we then started weaning me off and I am now in total remission with no thyroid meds whatsoever.
So yes, it is possible, and you definitely have reason to hope that this, too, shall pass. I am aware of the fact that my thyroid can go bad again at any time, but at least now I know the symptoms and warning signs and will nip it in the bud rather than suffer with it for so long.
Good luck!
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Sue,
That's fantastic to hear you went into remission and I will say this quietly so the gods won't hear, but I hope things continue to go well for you. You also give me hope!
Considering the number of "rare" diseases and responses I've had I'm beginning to think rare actually means "it's really bad and there is a good chance you'll get it, but because it's really bad we are going to call it rare so we can get it passed by the FDA" But that's just cynical me <grin>
AJ
That's fantastic to hear you went into remission and I will say this quietly so the gods won't hear, but I hope things continue to go well for you. You also give me hope!
Considering the number of "rare" diseases and responses I've had I'm beginning to think rare actually means "it's really bad and there is a good chance you'll get it, but because it's really bad we are going to call it rare so we can get it passed by the FDA" But that's just cynical me <grin>
AJ
I feel for you.
This is NO comparison to human graves disease, but I thought I'd share anyway...
My 16 year old cat is hyperthyroid and is on methymazole. He's supposed to take 3/4 of a pill a day, but I can't get him to take more than 1/2. I hide it in a chewy treat, slather it in bacon fat, he rejects it half the time, then I have to pill him and wait for him to spit it out multiple times. Clearly he knows what I'm up to, and he doesn't like it. He's lost a lot of weight and lately he's eating ashes and dirt every chance he can, so he is going in to check for the various types of anemia that can be associated with the treatment. He also has kidney disease, so we're hoping it's just electrolyte imbalances causing the dirt cravings. That said, it's amazing he's been with us as long as he has given all his other issues, and he's tolerated the methymazole treatment for more than a year without any trouble. We were offered the radiation treatment, but is was hugely expensive without insurance for a cat his age, would have required daily pills anyway, and could have made his kidney issues worse, so we declined.
Good luck weighing your options.
This is NO comparison to human graves disease, but I thought I'd share anyway...
My 16 year old cat is hyperthyroid and is on methymazole. He's supposed to take 3/4 of a pill a day, but I can't get him to take more than 1/2. I hide it in a chewy treat, slather it in bacon fat, he rejects it half the time, then I have to pill him and wait for him to spit it out multiple times. Clearly he knows what I'm up to, and he doesn't like it. He's lost a lot of weight and lately he's eating ashes and dirt every chance he can, so he is going in to check for the various types of anemia that can be associated with the treatment. He also has kidney disease, so we're hoping it's just electrolyte imbalances causing the dirt cravings. That said, it's amazing he's been with us as long as he has given all his other issues, and he's tolerated the methymazole treatment for more than a year without any trouble. We were offered the radiation treatment, but is was hugely expensive without insurance for a cat his age, would have required daily pills anyway, and could have made his kidney issues worse, so we declined.
Good luck weighing your options.
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mzh
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Our 20-year-old cat is also on methimazole treatment and has been for about three years. Amazingly, her kidneys are still good. Initially, she was on 1/2 pill a day but as she got older she was on 1/2 twice a day. Her T4 shot up to 4.6 anyway and she started losing too much weight for a small kitty. Put her on one pill in the AM, 1/2 in the PM. Two months later her T4 dropped to 0.4. Now were trying to stabilize her in the other direction.
I have a friend who has had LC for 8 years and is in the bathroom many times a day and during the night. It just occurred to me that perhaps she has hyperthyroidism on top of the LC b/c Entocort is doing nothing for her after two months. She is tiny and can't afford to lose weight. I keep trying to get her to come here but so far no luck.
I wonder how many here are hyperthyroid too, especially the thin members who have trouble keeping weight on. My hyper-t cat doesn't have diarrhea though but I've read that's common in people.
I have a friend who has had LC for 8 years and is in the bathroom many times a day and during the night. It just occurred to me that perhaps she has hyperthyroidism on top of the LC b/c Entocort is doing nothing for her after two months. She is tiny and can't afford to lose weight. I keep trying to get her to come here but so far no luck.
I wonder how many here are hyperthyroid too, especially the thin members who have trouble keeping weight on. My hyper-t cat doesn't have diarrhea though but I've read that's common in people.
Also have sleep apnea
I also have Graves disease. It's a mild form (called subclinical) so it may not be helpful to compare, but I found (after going through an adjustment period that I would be happy to tell you about if you wish, but which is probably too complicated to write in detail in this post), that I do very well on the medication methimazole (MMI). At this point, the thyroid is just background noise in my life. I actually had to stop and think . . . it will have been three years in Oct, 2012! Back when I was diagnosed, each month seemed like an eternity while I waited for the endocrinologist to become available, the tests to be run, decisions . . . decisions, next test, etc.
It's difficult to offer advice aside from "this IS treatable," because everyone is different. For example, some people react badly to the medicine. In that case surgery or radiation is the best option.
I have a personal approach that works for me but probably isn't right for most patients. To this point where it's pretty much a non-issue in my life, I learned how to read the test results myself and I test myself frequently and keep a detailed spreadsheet of results and symptoms. Frequent testing means that I can keep things under really close control, and now everything is fine. Some people aren't up for such frequent testing and most doctors don't recommend it, so I am just letting you know my approach. A good endocrinologist who respects you and listens closely is a huge help.
One other thing, I get my MMI from a compounding pharmacy in order to avoid irritating ingredients. They make it to my specifications, which is good because regular MMI has cornstarch and I don't do well with corn.
Feel free to ask if you have any questions.
--T
It's difficult to offer advice aside from "this IS treatable," because everyone is different. For example, some people react badly to the medicine. In that case surgery or radiation is the best option.
I have a personal approach that works for me but probably isn't right for most patients. To this point where it's pretty much a non-issue in my life, I learned how to read the test results myself and I test myself frequently and keep a detailed spreadsheet of results and symptoms. Frequent testing means that I can keep things under really close control, and now everything is fine. Some people aren't up for such frequent testing and most doctors don't recommend it, so I am just letting you know my approach. A good endocrinologist who respects you and listens closely is a huge help.
One other thing, I get my MMI from a compounding pharmacy in order to avoid irritating ingredients. They make it to my specifications, which is good because regular MMI has cornstarch and I don't do well with corn.
Feel free to ask if you have any questions.
--T
Two other things:
1) I got Graves BEFORE lymphocytic colitis, so it's not certain that the Graves comes FROM the LC in all cases. This might help you to feel better about how you came up with this . . . it might not have been the meds. It might have just been in the genes. Who knows the causes, but for me, I would rather it were unavoidable than think that I got it from unnecessary medications. So it's just an open question.
2) You may not need the iodine uptake. If the diagnosis is certain, it may be unnecessary. Mine was useless. I think they do an uptake test if you decide to ablate, but I don't know much about that. Again, a good endocrinologist that you trust is important. I had to shop around.
--T
1) I got Graves BEFORE lymphocytic colitis, so it's not certain that the Graves comes FROM the LC in all cases. This might help you to feel better about how you came up with this . . . it might not have been the meds. It might have just been in the genes. Who knows the causes, but for me, I would rather it were unavoidable than think that I got it from unnecessary medications. So it's just an open question.
2) You may not need the iodine uptake. If the diagnosis is certain, it may be unnecessary. Mine was useless. I think they do an uptake test if you decide to ablate, but I don't know much about that. Again, a good endocrinologist that you trust is important. I had to shop around.
--T
I really appreciate your response. You could be absolutely right about the source of my diseases. However I've asked my extended family and autoimmune diseases just don't seem to be there. I understand the sequence of events that you experienced, but with no familial history of autoimmune diseases and the introduction of the meds that have a causative relationship with LC, it does leave me wondering.tnelson wrote:Two other things:
1) I got Graves BEFORE lymphocytic colitis, so it's not certain that the Graves comes FROM the LC in all cases. This might help you to feel better about how you came up with this . . . it might not have been the meds. It might have just been in the genes. Who knows the causes, but for me, I would rather it were unavoidable than think that I got it from unnecessary medications. So it's just an open question.
2) You may not need the iodine uptake. If the diagnosis is certain, it may be unnecessary. Mine was useless. I think they do an uptake test if you decide to ablate, but I don't know much about that. Again, a good endocrinologist that you trust is important. I had to shop around.
--T
I did the iodine uptake test and only after the fact did I learn from trusty google that the blood tests are apparently more definitive and the uptake test most likely was unnecessary. That, along with my gut feeling that this doctor may not be a good match leads me to think I may be doctor searching in the near future. Since it has taken now 5 months to get to the point where I may actually get antithyroid treatment, my intention is to start the meds (although it appears that the safest of the two meds uses lactose as a filler, and as is no surprise I'm lactose intolerant so I'm not sure what will happen) and begin to search out other endo's that may be a better fit.
Since this looks to be a life long relationship, I think your words about a good endo that I trust being important is sage wisdom.
Yes, I can see why you are wondering about the source of the thyroid trouble, especially with no family history. You are the best judge of how where it came from, as you know your history best.
Just reiterating, since you are worried about lactose in the medication, I get my MMI from a compounding pharmacy in order to avoid irritating ingredients. You might *eventually* check into compounded medication, after finding out how you do on anti-thyroid medication. Definitely, an endocrinologist that you like and trust will make your road easier. :-)
Best of everything to you!
--T
Just reiterating, since you are worried about lactose in the medication, I get my MMI from a compounding pharmacy in order to avoid irritating ingredients. You might *eventually* check into compounded medication, after finding out how you do on anti-thyroid medication. Definitely, an endocrinologist that you like and trust will make your road easier. :-)
Best of everything to you!
--T
Ttnelson wrote:I also have Graves disease. It's a mild form (called subclinical) so it may not be helpful to compare, but I found (after going through an adjustment period that I would be happy to tell you about if you wish, but which is probably too complicated to write in detail in this post), that I do very well on the medication methimazole (MMI). At this point, the thyroid is just background noise in my life. I actually had to stop and think . . . it will have been three years in Oct, 2012! Back when I was diagnosed, each month seemed like an eternity while I waited for the endocrinologist to become available, the tests to be run, decisions . . . decisions, next test, etc.
It's difficult to offer advice aside from "this IS treatable," because everyone is different. For example, some people react badly to the medicine. In that case surgery or radiation is the best option.
I have a personal approach that works for me but probably isn't right for most patients. To this point where it's pretty much a non-issue in my life, I learned how to read the test results myself and I test myself frequently and keep a detailed spreadsheet of results and symptoms. Frequent testing means that I can keep things under really close control, and now everything is fine. Some people aren't up for such frequent testing and most doctors don't recommend it, so I am just letting you know my approach. A good endocrinologist who respects you and listens closely is a huge help.
One other thing, I get my MMI from a compounding pharmacy in order to avoid irritating ingredients. They make it to my specifications, which is good because regular MMI has cornstarch and I don't do well with corn.
Feel free to ask if you have any questions.
--T
Somehow I missed your first post and I'm really sorry. When you talk about the months that you wait, I absolutely understand that. I've been feeling bad for a while. Finally found a new PCP several months ago who did tests. Since then it's been nothing but waiting for tests, for my first endo appt which took a month and half to get and then he had a family emergency so it was another month and then for him to rerun the tests and then because of the c/t scan and iodine contrast, waiting longer to do the iodine uptake test and now tomorrow, with all the tests complete I am anticipating that I will finally get the meds.
You said that you get your meds from a compounding pharmacy. That's an excellent suggestion. I was not aware that was an option. Since I'm lactose intolerant and MMI contains lactose as a filler, is that one of the ingrediants you have been able to avoid?
How are you able to get tested regularly? Another one of my fears is that my doctor will base the dosage on the TSH and as a result my weight will go out of control. I've read it's important to get T3 and T4 normalized but that TSH lags. I'm trying to learn about all of the tests and how to read the results. Does your doctor work with you on getting frequent regular tests or do you have some other way? I understand your desire for frequent testing. We HAVE to be our own advocate in this as well as any other conditions, simply because, in my own experience, having left it up to the professionals has gotten me into more trouble than not.
I've only seen the endo once, but he seems to lack compassion and I am not entirely sure we have good communication so I'm now searching for a new endo. Part of the challenge is that hyperT leaves me anxious and scared and I'm terrified to make the wrong decision.
Thank you so much for the information you provided, it has been very helpful. Any further info you can provide would be greatly appreciated.
Thank you!