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Toxic Multinodular goiter
I was diagnosed with toxic mutinodular goiter 7 years ago when I was 22. I refused surgery and Radioactive iodine because I was scared to "get fat". Lol, thats funny now. My symptoms are worsening. I don't sleep for 2 days at a time and I am extremely depressed, losing weight and feel like Im going insane. I am new grad nurse and have no health benefits because of the wonderful Michigan economy. I was wondering if how much it would cost for a Dr. to take out my thyroid? I can't take it anymore. I pay cash.
Hi Amy, Good thing you went when you did! I had similar EKG issues but not so bad, probably because I have been on high blood pressure pills for years. My Endo also put me on a daily aspirin regimen.
I tell you in my case, me and Tapazol do not get along well. Everyone is different though. Since our nodules are "Toxic" meaning they are randomly producing as much hormone on their own when every they feel like it, it is very hard to control. In my case many of my symptoms were HypO to begin with but I would flop back and forth from Hypo to HypEr , ESPECIALLY WITH ANY Caffeine, man that is what really causes problems. So for year of being un treated in my case, I was eating things and drinking things that would me be go more HypO (except caffeine ) so I gradually gained alot of weight in 6 years time and when I was finally diagnosed several months ago, I was pot on Methinmazone (Tapazol) and I felt great for about 3 weeks then went way way way hypO. I think that happened because at the same time had cut out ALL fast food and stopped eating anything with iodine, stopped taking any supplements that had Tyrosine or iodine in it and eventually, naturally the supply of iodine and Tyrosine was much less in my blood stream (now this is all conjecture on my part of course) so after this period of eating right and reading labels etc. the amount of Methimezone was too much I was so HypO I had to take sick day, which I simply don't do. Unless I am dying or contagious I go to work. So at that point I discussed with my doctor about cutting back the Methimazone. I did not gain weight I actually lost about 8 pounds so far, I attribute a lot of that to just eating better in general.
It is still so hard to manage, but since I know what screws me up I avoid it and that makes it a bit more manageable. I think the last thing to worry about is gaining weight, just feel better first!!
Did you get your antibodies blood work done ? I am wondering if you started out with and autoimmune problem like Graves maybe before it developed into TMNG ? I am trying to find the origin in my case. I know that on my mom's side of the family in one branch of the family tree a lot of them have all had thyroid problems in every generations going way back.
I am glad to hear you age getting some help! In the mean time , I am sure you are reading lots about the RAI ablation just like me.
Good Luck, Thanks for keeping us posted!
I tell you in my case, me and Tapazol do not get along well. Everyone is different though. Since our nodules are "Toxic" meaning they are randomly producing as much hormone on their own when every they feel like it, it is very hard to control. In my case many of my symptoms were HypO to begin with but I would flop back and forth from Hypo to HypEr , ESPECIALLY WITH ANY Caffeine, man that is what really causes problems. So for year of being un treated in my case, I was eating things and drinking things that would me be go more HypO (except caffeine ) so I gradually gained alot of weight in 6 years time and when I was finally diagnosed several months ago, I was pot on Methinmazone (Tapazol) and I felt great for about 3 weeks then went way way way hypO. I think that happened because at the same time had cut out ALL fast food and stopped eating anything with iodine, stopped taking any supplements that had Tyrosine or iodine in it and eventually, naturally the supply of iodine and Tyrosine was much less in my blood stream (now this is all conjecture on my part of course) so after this period of eating right and reading labels etc. the amount of Methimezone was too much I was so HypO I had to take sick day, which I simply don't do. Unless I am dying or contagious I go to work. So at that point I discussed with my doctor about cutting back the Methimazone. I did not gain weight I actually lost about 8 pounds so far, I attribute a lot of that to just eating better in general.
It is still so hard to manage, but since I know what screws me up I avoid it and that makes it a bit more manageable. I think the last thing to worry about is gaining weight, just feel better first!!
Did you get your antibodies blood work done ? I am wondering if you started out with and autoimmune problem like Graves maybe before it developed into TMNG ? I am trying to find the origin in my case. I know that on my mom's side of the family in one branch of the family tree a lot of them have all had thyroid problems in every generations going way back.
I am glad to hear you age getting some help! In the mean time , I am sure you are reading lots about the RAI ablation just like me.
Good Luck, Thanks for keeping us posted!
Well I went to the endocrinologist yesterday....and the news gets worse. He put me on 10 mg of Tapazol, cont. the 50 mg of Atenenlol and ordered a stat ekg. The EKG showed A-fib. I was like WTF!!??? He said that my heart took a beating from not having my thyroid taken care of sooner. So now I have to add 325 mg aspirin to that regimen. I go see a cardiologist tomorrow for that problem. However, I am very greatful for all of the help the physicians are giving me (all of my visits have been free so far). He said this is only a temporary fix and recommends the RAI when I land a full time RN position with benefits. I feel kind of overwhelmed beacause I am only 29. I have been taking your advice on the diet though. I cut out all caffiene and am trying to eat better. Did you gain weight on the Tapazole? Did you become less anxious? Just wondering if this will help me from feeling like Im crawling out of my skin. The B-blockers have definately help alot. Thanks for your imput.
Amy
Amy
Hi Amy, It sounds like you could have a fair amount of stress at your job too!
Interesting that they put you on a Beta blocker first. Were you having heart pounding sort of symptoms ? I am curious as to whether or not you have pain in your nodules or not ? On my left side, though my larges nodule is only the size of a marble I have a constant dull pain. I was wondering if other people have that too or if it was just me.
I hope in the lab work they are getting your "FreeT3 and Free T4" Rather than just total T4 . The FTs are the more important numbers.
So back when you have the Uptake and Scan did they also do any Ultrasound?
I actually went to a traveling Heath screening and that is where I first saw the nodules That was pretty cheap but not as through as a radiologist will do in a hospital. Some doctors feel the Ultrasound is more useful since they already know the nodules are "hot"
If it is any consolation to you, I have been on Methimozole, the thyroid inhibitor drug for about a month and have had my dosage decreased twice. I was feeling poorly this week until I cut the does back (Doctor agreed) . I think what was happening, is that since I have been so concise of everything I eat, and I drink about 12 glasses of water a day and I have really worked hard to avoid things that aggravate this problem is has actually been working. I don’t know what the final result of my situation will be. I go back for labs in a couple of weeks and will probably also have another thyroid ultrasound done. If the nodules are the same or smaller ( I hope smaller) then I am just going to continue to do what I am doing. But who knows I may have to do something more drastic if things go the other way.
A lot has probably changed in the 7 years since you were diagnosed. Hopefully you can have some luck on the meds for now and you can decide later about what course of treatment you want, especially if you have doctors around that are willing to help you. I would urge you to get as much advice as you can. There are several good web sites out there that were helpful. I can send you a few of them that were the most helpful to me if you like. It is not as easy to find things about Toxic Multinodular Goiter as it is to find other thyroid disorders.
I hope you feel better soon.
McMillan
Interesting that they put you on a Beta blocker first. Were you having heart pounding sort of symptoms ? I am curious as to whether or not you have pain in your nodules or not ? On my left side, though my larges nodule is only the size of a marble I have a constant dull pain. I was wondering if other people have that too or if it was just me.
I hope in the lab work they are getting your "FreeT3 and Free T4" Rather than just total T4 . The FTs are the more important numbers.
So back when you have the Uptake and Scan did they also do any Ultrasound?
I actually went to a traveling Heath screening and that is where I first saw the nodules That was pretty cheap but not as through as a radiologist will do in a hospital. Some doctors feel the Ultrasound is more useful since they already know the nodules are "hot"
If it is any consolation to you, I have been on Methimozole, the thyroid inhibitor drug for about a month and have had my dosage decreased twice. I was feeling poorly this week until I cut the does back (Doctor agreed) . I think what was happening, is that since I have been so concise of everything I eat, and I drink about 12 glasses of water a day and I have really worked hard to avoid things that aggravate this problem is has actually been working. I don’t know what the final result of my situation will be. I go back for labs in a couple of weeks and will probably also have another thyroid ultrasound done. If the nodules are the same or smaller ( I hope smaller) then I am just going to continue to do what I am doing. But who knows I may have to do something more drastic if things go the other way.
A lot has probably changed in the 7 years since you were diagnosed. Hopefully you can have some luck on the meds for now and you can decide later about what course of treatment you want, especially if you have doctors around that are willing to help you. I would urge you to get as much advice as you can. There are several good web sites out there that were helpful. I can send you a few of them that were the most helpful to me if you like. It is not as easy to find things about Toxic Multinodular Goiter as it is to find other thyroid disorders.
I hope you feel better soon.
McMillan
I went to the family doctor today and got more labs drawn. My last TSH was about 1 year ago and it was 0.02. T3 and T4 were high but not off the charts. Had an uptake scan 7 years ago that showed multiple hot nodules. Fine needle came back neg. I found a Dr. in my hospital (he actually called me a couple of hours ago). He wants to see me for free in his office, and prescribed me atenenol 50 mg for the meantime. I think his plan is to put me on antithyroid meds as well, at least until I get insurance. I am not on any other meds. I am so greatful for the Dr's generosity. My social life and career have suffered from this illness. My supervisor didn't give me the RN position at work because she thinks "I don't fit in". I know sounds funny but when your flying around the unit at 100 mph no one really appreciates the work you do but rather how socially accepted you are.
Hi Amy, Wow take out your thyroid ? I realize that you were diagnosed 7 years ago etc. Have you had any recent ultrasound ?
As you know from my other posts I too have Toxic MultiNodular goiter with 6 nodules and have for the time being, opted against RAI Ablation or surgery, but the symptoms are very difficult to control even with Methimazole, In my case I tend to have more Hypo symptoms than Hyper but I did swing back and forth a lot beofre I radically changed my diet, cut out all fast food, cut way down on caffeine making all my own food mostly gluten free etc. This has made a big enough difference in about a month and half of time that i had to cut back on the Methimazole because I was goign too hypo. (I don't recommend that anyone mess with their medication unless they have discussed it with their doctor which I have)
In my case I had a pretty poor diet of mostly fast food, so making a drastic change like that, to reading labels and eating healthy, in my case made a huge difference in just over all health. I am not implying that you eat poorly etc. but I wonder if you can pinpoint the cause of what is making your symptoms worse, more stress in your life etc?
Have you been taking any meds since you were diagnosed?
I must say that some days I too just wonder if should just have the dang thing taken out! I have been sick for 7 years but did not know what it was until late last year.
McMillan
As you know from my other posts I too have Toxic MultiNodular goiter with 6 nodules and have for the time being, opted against RAI Ablation or surgery, but the symptoms are very difficult to control even with Methimazole, In my case I tend to have more Hypo symptoms than Hyper but I did swing back and forth a lot beofre I radically changed my diet, cut out all fast food, cut way down on caffeine making all my own food mostly gluten free etc. This has made a big enough difference in about a month and half of time that i had to cut back on the Methimazole because I was goign too hypo. (I don't recommend that anyone mess with their medication unless they have discussed it with their doctor which I have)
In my case I had a pretty poor diet of mostly fast food, so making a drastic change like that, to reading labels and eating healthy, in my case made a huge difference in just over all health. I am not implying that you eat poorly etc. but I wonder if you can pinpoint the cause of what is making your symptoms worse, more stress in your life etc?
Have you been taking any meds since you were diagnosed?
I must say that some days I too just wonder if should just have the dang thing taken out! I have been sick for 7 years but did not know what it was until late last year.
McMillan
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