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I have Hashimoto's Toxicosis, and I need advice
I am a 50 year old male who has been dealing with Thyroid problems for almost three years now.
I was initially diagnosed with a "slow" thyroid and put on synthroid. A year ago I became extremely ill and was diagnosed with Grave's disease, then Hashimoto's, then Hashimoto's Toxicosis.
They also found a tumor on one adrenal gland, but they decided it is not growing.
I spent three months off work going to doctors and having tests before the final decision was made and treatment was started. I was able to go back to work, slowly, and things got better for a while. Then I started pushing too hard and now I am back to a hyper state and it looks like I may be shut down for a few weeks because my body is shot. I have no energy reserves and my chest aches most of the time. I cannot work,or socialize, for that matter.
I am taking 40MG of Methimazole to shut down the thyroid, 1.25MG of Levothyrox to replace hormones, 3MG of Alprazolam to stay sane, and 25MG of Topropl XL to avoid rapid heartrate.
My latest labs, which I will discuss with my GP Wednesday, showed my TSH as low, and my t-3 and t-4 within normal ranges. my antibody count is over 1200. The day they took my blood I was so ill my wife had to help me around the facilty, but as always, my blood looks "good enough".
I am not a wizard regarding medical terms and test results, so forgive the complete lack of usefull information.
Question one. I do not understand "toxicosis". The more I read, and there is not much info out there, the less I understand.
Question two. Does the amount of mental and physical stress I incur affect the dosages I need to stay stable?
Question three. Am I going to slowly (sometimes rapidly) yoyo up and down untill the antibodies finally devour my thyroid?
Question four. What benefit is there to keeping my thyroid if it is going to slowly deteriorate, making me constantly ill and risking cancer as it dies? I am seriously considering finding a doctor that will discuss a total thyroidectomy, but when I read about that it sounds like a roll of the dice in many ways.
I hope I understand the site rules correctly and can consider this post one question. Two topics in six months is going to be tough enough.
I was initially diagnosed with a "slow" thyroid and put on synthroid. A year ago I became extremely ill and was diagnosed with Grave's disease, then Hashimoto's, then Hashimoto's Toxicosis.
They also found a tumor on one adrenal gland, but they decided it is not growing.
I spent three months off work going to doctors and having tests before the final decision was made and treatment was started. I was able to go back to work, slowly, and things got better for a while. Then I started pushing too hard and now I am back to a hyper state and it looks like I may be shut down for a few weeks because my body is shot. I have no energy reserves and my chest aches most of the time. I cannot work,or socialize, for that matter.
I am taking 40MG of Methimazole to shut down the thyroid, 1.25MG of Levothyrox to replace hormones, 3MG of Alprazolam to stay sane, and 25MG of Topropl XL to avoid rapid heartrate.
My latest labs, which I will discuss with my GP Wednesday, showed my TSH as low, and my t-3 and t-4 within normal ranges. my antibody count is over 1200. The day they took my blood I was so ill my wife had to help me around the facilty, but as always, my blood looks "good enough".
I am not a wizard regarding medical terms and test results, so forgive the complete lack of usefull information.
Question one. I do not understand "toxicosis". The more I read, and there is not much info out there, the less I understand.
Question two. Does the amount of mental and physical stress I incur affect the dosages I need to stay stable?
Question three. Am I going to slowly (sometimes rapidly) yoyo up and down untill the antibodies finally devour my thyroid?
Question four. What benefit is there to keeping my thyroid if it is going to slowly deteriorate, making me constantly ill and risking cancer as it dies? I am seriously considering finding a doctor that will discuss a total thyroidectomy, but when I read about that it sounds like a roll of the dice in many ways.
I hope I understand the site rules correctly and can consider this post one question. Two topics in six months is going to be tough enough.
I can't see how a doctor would tell you it is Graves or other hyperthyroidism issues... As said above the TSI testing and an uptake scan would clearly show autoimmune Graves - or just hyperthyroidism
Treatment on the other hand is pretty much the same as using PTU or other anti thyroid medication regardless of autoimmune or regular ( for better words) hyperthyroidism. Along with beta blockers and other things you seem to be doing.
Treatment on the other hand is pretty much the same as using PTU or other anti thyroid medication regardless of autoimmune or regular ( for better words) hyperthyroidism. Along with beta blockers and other things you seem to be doing.
When they diagnosed you with Grave's disase did they run the bood test for TSI antibodies??
I am a 20 year old female that was diagnosed with graves disease almost 4 years ago. I was given tapazole (methimazole) for almost 3 years. the tapazole made my thyroid hypo and I stopped taking the betablockers since my heart rate was slow. I was told to stop the tapazole and then months later my thyroid was hyper again.I switched insurance provider and went from kaiser to sharp where I was given ptu which also helped for a while but not as much as the tapazole , I have seen 2 endocrinologists at sharp ad both are confused on wether I have graves or some form of hyperthyroidism, like you I have been up and down in my weight and was even told that I might have cystic fibrosis but a rare form since it's not in my lungs. now I weigh 87lbs, I've always been slim but weighed atleast 98lbs in the past. I'm currently on ptu and propranolol also captopril for high bp since my thyroid is so out of wack. whenni was first diagnosed with graves I was also told I might have adrenal hyperplasia but then that was inconclusive. I saw one of the best endo's in san Diego , ca. but even he was lost. I am hoping to find the answer myself but as of now like I had told my endo it seems like I have hashimoto's and graves. I have difficulty keeping weight on I get anxious at times, I have had trouble working and going to school since my health is up and down. I was used as a guiniea pig and now that doctors made a mess they don't wanna clean it up.
Well, I saw my GP today. We talked for almost an hour, which probably messed up the rest of his afternoon, but he is totally committed to making me well.
We talked about my test results, and my symptoms, and I told him I wanted to see an Endo in Des Moines. I told him I already had an appointment, but if he objected, or could recommend a better Endo, I would heed his council.
He agreed a second opinion was a good thing. I asked, and he allowed me to spend five minutes telling him about my disease while he corrected me along the way. I told him I wanted to understand exactly what we were talking about. Then I asked him why surgery or RAI was not the quickest end to half my problems.
He told me that surgery may not be the best option, because the diagnosis may not be correct and he wanted the opinion of another Endo. He said he had read an article recently that had me written all over it, and it involved a more complex autoimune disorder that affects several organs, and we may only be part way there.
So I asked him to run any tests he could think of the Endo he chose would want to run, to expidite my first visits, and he said he would do that and a few more to satisfy his curiousity.
The Endo I am going to see was my first choice anyway, but my appointment is for September. He said he'd get the test results back, write a cover letter, and send about two inches of files for them to review with the request to see me ASAP. He said getting seen sooner shouldn't be a problem because of cacellations, and Endo patients die all the time.
He's a peach.
Lowered my Levothyroxin from 1.25 to 1.0
Sounds like this going to take all Summer, again.
We talked about my test results, and my symptoms, and I told him I wanted to see an Endo in Des Moines. I told him I already had an appointment, but if he objected, or could recommend a better Endo, I would heed his council.
He agreed a second opinion was a good thing. I asked, and he allowed me to spend five minutes telling him about my disease while he corrected me along the way. I told him I wanted to understand exactly what we were talking about. Then I asked him why surgery or RAI was not the quickest end to half my problems.
He told me that surgery may not be the best option, because the diagnosis may not be correct and he wanted the opinion of another Endo. He said he had read an article recently that had me written all over it, and it involved a more complex autoimune disorder that affects several organs, and we may only be part way there.
So I asked him to run any tests he could think of the Endo he chose would want to run, to expidite my first visits, and he said he would do that and a few more to satisfy his curiousity.
The Endo I am going to see was my first choice anyway, but my appointment is for September. He said he'd get the test results back, write a cover letter, and send about two inches of files for them to review with the request to see me ASAP. He said getting seen sooner shouldn't be a problem because of cacellations, and Endo patients die all the time.
He's a peach.
Lowered my Levothyroxin from 1.25 to 1.0
Sounds like this going to take all Summer, again.
Hi,
I had the same diagnosis as you, I am 10 days post RAI (radio active iodine 131) to kill my thyroid off and to hopefully stop anymore hyper episodes. I have used Xanax in the past, and found for me it made things worse, simply because of the side effects between dosing etc, but most don't have that problem, but I do keep it with me in my purse just in case.
I don't think I have an adrenal problem though it hasn't been checked that I know of...just the hashitoxicosis....there is an interesting story of another with this at :
http://www.hateshopping.com/hashitoxicosis.html
The high lows changing so quickly from day to day, sometimes hour to hour drives you crazy mentally and physically....I never tried all the meds, because the other dr's never found anything but low or normal levels (been on synthroid for 18 yrs)....I finally got referred to a good endo and one month after diagnosis I had RAI... and am waiting to feel better.....
Best wishes to you....and check out the site above, it's seems to be a very accurate story of how we with this disease feel..
God Bless,
pam
I had the same diagnosis as you, I am 10 days post RAI (radio active iodine 131) to kill my thyroid off and to hopefully stop anymore hyper episodes. I have used Xanax in the past, and found for me it made things worse, simply because of the side effects between dosing etc, but most don't have that problem, but I do keep it with me in my purse just in case.
I don't think I have an adrenal problem though it hasn't been checked that I know of...just the hashitoxicosis....there is an interesting story of another with this at :
http://www.hateshopping.com/hashitoxicosis.html
The high lows changing so quickly from day to day, sometimes hour to hour drives you crazy mentally and physically....I never tried all the meds, because the other dr's never found anything but low or normal levels (been on synthroid for 18 yrs)....I finally got referred to a good endo and one month after diagnosis I had RAI... and am waiting to feel better.....
Best wishes to you....and check out the site above, it's seems to be a very accurate story of how we with this disease feel..
God Bless,
pam
Thank you both for the great info.
I read the link in the last post, and that is a pretty clear explaination of what I am dealing with. I understand a little better now.
It really makes me wonder why radical treatment was not recommended in my case. I cannot afford to sit around for years waiting for my thyroid to disintigrate.
I will bring this up with my GP and press him to refer me to another specialist. Surgery at the facility my current Endocrinologist practices from would be too inconvenient for my wife as well as myself. Closer to home is better.
A second opinion regarding the adrenal tumor would be welcome, too. The minute I heard tumor, I wanted it cut out.
Sadly, I have seen several doctors already and gotten differing opinions from each one.
I guess I will need to get as educated as possible and then find a doctor that agrees with me. My GP is great, but he is not telling me there is one path to follow that is the best. He just keeps telling me it is a very rare situation and dealing with it is complicated and takes time. I need to pace myself and rest a lot.
His instinct is to trust the Endo I am seeing now, but he also sees that I am getting worse instead of better, because I am not sitting at home "resting".
As the bread winner, I don't have years to sit around and get better. I couldn't go years like this even if I was wealthy.
I read the link in the last post, and that is a pretty clear explaination of what I am dealing with. I understand a little better now.
It really makes me wonder why radical treatment was not recommended in my case. I cannot afford to sit around for years waiting for my thyroid to disintigrate.
I will bring this up with my GP and press him to refer me to another specialist. Surgery at the facility my current Endocrinologist practices from would be too inconvenient for my wife as well as myself. Closer to home is better.
A second opinion regarding the adrenal tumor would be welcome, too. The minute I heard tumor, I wanted it cut out.
Sadly, I have seen several doctors already and gotten differing opinions from each one.
I guess I will need to get as educated as possible and then find a doctor that agrees with me. My GP is great, but he is not telling me there is one path to follow that is the best. He just keeps telling me it is a very rare situation and dealing with it is complicated and takes time. I need to pace myself and rest a lot.
His instinct is to trust the Endo I am seeing now, but he also sees that I am getting worse instead of better, because I am not sitting at home "resting".
As the bread winner, I don't have years to sit around and get better. I couldn't go years like this even if I was wealthy.
You need to find out which of the 5 Adrenal Gland Tumors you have, by which ever means of test that need to be done, then treat accordingly.
I understand that adrenals and thyroid symptoms run parallel to each other, that is, they are just about the same.
Some people with Hashitoxicosis prefer doing RAI to cure the hyper symptoms fast. Surgery would have the same conclusion to symptoms. However, ATDs will take longer, with levels swinging up and down. You need permanent control with permanent treatment. If your hyperthyroidism is sever, there is less chance of permanent control with ATDs.
The first issue is the tumor. Once the tumor is corrected it might help correct some of the Hyper/Hashi symptoms.
Second is the Hashitoxicosis/treatment.
You would need to discuss all this with the new endo. Tumor - Hashi. Then follow through.
Good Luck! GL
I understand that adrenals and thyroid symptoms run parallel to each other, that is, they are just about the same.
Some people with Hashitoxicosis prefer doing RAI to cure the hyper symptoms fast. Surgery would have the same conclusion to symptoms. However, ATDs will take longer, with levels swinging up and down. You need permanent control with permanent treatment. If your hyperthyroidism is sever, there is less chance of permanent control with ATDs.
The first issue is the tumor. Once the tumor is corrected it might help correct some of the Hyper/Hashi symptoms.
Second is the Hashitoxicosis/treatment.
You would need to discuss all this with the new endo. Tumor - Hashi. Then follow through.
Good Luck! GL
Than you for your response.
Question three refers to the fact that my hormone levels swing up and down from day to day, and I am hyperthyroid more often than not, even though my bloodwork may look good.
I have lost twenty pounds in the last year. twenty pound of muscle I cannot afford. I look like a scarecrow. I have been drinking five Ensures a day as well as snacks and meals for the last two months. I burn an incredible amount of calories when I am in a hyper phase.
This is very hard on my body. Sometimes all my organs hurt. My wife thinks continuing to work is harming me and it's hard to argue. I am not able to work at the moment, but I will go back ASAP, even if it is a few hours and then a nap.
The doctors keep telling me it will take months yet to find the proper level of medication, maybe a year. I am just trying to figure out if they will ever be able to find the correct dosage as long as my thyroid is present.
I don't know if I should press my doctor to refer me to another Endocrinologist in the hopes of "fast tracking" me back to health, or sell my business and starve to death while I hope to one day be healthy.
The Endocrinologist I am seeing is one of the top five in the country and my GP was elated when I was able to get in to see him. He is 2 1/2 hours away one direction, so seeing him is a trip, more than I can do when I am really sick. I won't see him till September unless I call him and tell him things are not going well. He is conducting cutting edge research stuff and I like the guy, but I don't want to be a guinea pig.
There is another hospital 100 miles away that would be more convenient and I believe has Endocrinologists that are capable, though maybe not top in the field.
The odd thing is, I have had several MRIs, but never above my breastplate. I would think someone would do some type of imaging of my thyroid, and the pituitary gland would be a place to visit as well, it would seem to me. My endo ordered a full scan last visit, but Blue Cross told his secretary they knew more than my doctor and refused to pay for above the thyroid/head portion of the MRI. They would only pay for another look at my adrenal glands.
I'm trying to figure out exactly what I will discuss with my GP on wednesday.
Any input, like the excellant response above, would be very helpful.
Question three refers to the fact that my hormone levels swing up and down from day to day, and I am hyperthyroid more often than not, even though my bloodwork may look good.
I have lost twenty pounds in the last year. twenty pound of muscle I cannot afford. I look like a scarecrow. I have been drinking five Ensures a day as well as snacks and meals for the last two months. I burn an incredible amount of calories when I am in a hyper phase.
This is very hard on my body. Sometimes all my organs hurt. My wife thinks continuing to work is harming me and it's hard to argue. I am not able to work at the moment, but I will go back ASAP, even if it is a few hours and then a nap.
The doctors keep telling me it will take months yet to find the proper level of medication, maybe a year. I am just trying to figure out if they will ever be able to find the correct dosage as long as my thyroid is present.
I don't know if I should press my doctor to refer me to another Endocrinologist in the hopes of "fast tracking" me back to health, or sell my business and starve to death while I hope to one day be healthy.
The Endocrinologist I am seeing is one of the top five in the country and my GP was elated when I was able to get in to see him. He is 2 1/2 hours away one direction, so seeing him is a trip, more than I can do when I am really sick. I won't see him till September unless I call him and tell him things are not going well. He is conducting cutting edge research stuff and I like the guy, but I don't want to be a guinea pig.
There is another hospital 100 miles away that would be more convenient and I believe has Endocrinologists that are capable, though maybe not top in the field.
The odd thing is, I have had several MRIs, but never above my breastplate. I would think someone would do some type of imaging of my thyroid, and the pituitary gland would be a place to visit as well, it would seem to me. My endo ordered a full scan last visit, but Blue Cross told his secretary they knew more than my doctor and refused to pay for above the thyroid/head portion of the MRI. They would only pay for another look at my adrenal glands.
I'm trying to figure out exactly what I will discuss with my GP on wednesday.
Any input, like the excellant response above, would be very helpful.
Question one. Hashitoxicosis is primary Hashimoto's thyroiditis, an autoimmune thyroid disorder, in which individuals will experience intermittent or sporadic periods where they also have symptoms of hyperthyrodism. In some ways, it can be described as having both HT and Graves' disease, if, both antibodies of the diseases are present.
Question two. Stress is not good for autoimmune, whether it interferes with dosage and levels, I really don't think so. It would have more an effect on your symptoms with the chances of being/getting getting worse or take longer for you to heal. Antidepressants will help us get through the process a little more easily.
Question three. I don't understand this question.
Question four. No benefits. As long as you have a thyroid, antibodies can attack and destroy, while making a person ill with symptoms. With surgery there is still some thyroid tissue left for antibodies to attack and with a chance for the thyroid to grow completely back. However if you have a tumor there may not be any other choice for you but surgery with RAI after to kill off the remaining tissue left. If cancer, doctor might want to keep TSH suppressed to 0.1 or less.
I am not sure but I don't thing the topic or quanity of posting rules apply to this forum. Others might chime in if I am wrong and then we both will know for sure.
Good Luck!
GL
Question two. Stress is not good for autoimmune, whether it interferes with dosage and levels, I really don't think so. It would have more an effect on your symptoms with the chances of being/getting getting worse or take longer for you to heal. Antidepressants will help us get through the process a little more easily.
Question three. I don't understand this question.
Question four. No benefits. As long as you have a thyroid, antibodies can attack and destroy, while making a person ill with symptoms. With surgery there is still some thyroid tissue left for antibodies to attack and with a chance for the thyroid to grow completely back. However if you have a tumor there may not be any other choice for you but surgery with RAI after to kill off the remaining tissue left. If cancer, doctor might want to keep TSH suppressed to 0.1 or less.
I am not sure but I don't thing the topic or quanity of posting rules apply to this forum. Others might chime in if I am wrong and then we both will know for sure.
Good Luck!
GL
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