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Discussion Starter · #1 ·
I'm 56 and new to this forum and I need some advice. I was diagnosed with Graves in September after multiple and severe symptoms of hyperthyroidism emerged rapidly over a two week period. I was referred first to a cardiologist who put me on a beta blocker and referred me to an endocrinologist after initial labs came back.

My labs on 10/9 (that I have)
TSH <.006 (normal range .45 - 4.50)
T4 3.66 (normal range .82-1.77)
I also had an RI uptake and a few other labs but I don't have the numbers.
My endocrinologist put me on 30mg/day of Methimazole and continued the beta blocker.

Six weeks later on 11/27, my labs:
TSH .286
T4 0.59
TSH is improving, though still too low, and my T4, ALT, AST and ALCALINE are too high. He lowered my dosage to 20mg/day and discontinued the beta blocker.

I felt absolutely back to normal after 6 weeks on the meds but after the first few weeks, I lost almost all of my sense of taste on this drug and my doctor is recommending RAI if I can't take this medication for a whole year. I am usually a very healthy eater but now, nothing healthy tastes good and it's hard to get myself to eat anything except salty foods. I can only taste a little salt and a little citrus.

I have an appointment on January 2 with my endocrinologist and am hoping to get more information and opinions about this and other possible treatments before proceeding. I would like another endocrinologist's opinion but every other one recommended to me is either not taking new patients or takes months to get in to.

I am also having a lot of problems with my hands swelling and have developed a trigger finger. My doctor says that this is not related to Graves or the medication but I have my doubts.

Does anyone have any help for me?
 

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It looks like your doctor is trying to treat your TSH. What needs to be looked at is your Free T3 and Free T4. They are the ones that really show what your thyroid is doing. As they come back in level your pituitary gland starts making more TSH, but there is a delay between that and the levels your thyroid is producing. You can ask that these be run by your current Endo.

I have no idea where your doctor gets their info but edema (swelling) is definitely listed on the methimazole minor adverse reaction list.

Loss of taste is also on the minor adverse reaction list. By all accounts it should return within 2 to 3 weeks of stopping the medication. Since it's bothering you, it's possible you could switch to PTU ( propylthiouracil) and do alright with it. I switched from methimazole to PTU due to itching and back to methimazole because of nausea with the PTU. I figured the itching wasn't as bad as being constantly nauseous. Although I was only on the methimazole for an additional month or so before my thyroidectomy, luckily the itching didn't come back in that time, which was longer than the time frame it appeared the first time. Depending on what your Frees currently are, there's a possibility that you would only need a maintenance dose of the PTU.

As for the trigger finger, I know it can be associated with hypothyroidism, but it can also be caused by rheumatoid arthritis (yet another autoimmune disease) and gout. Of course, hypo and hyper symptoms can also be interchangeable, plus you do have swelling in your hands, so right now I'd only be guessing on it's cause.

Since this is your first bout of Graves, personally I would find a doctor to switch to that tests and treats Frees and try to stay on a dose of PTU long enough to go into remission and see if I was one of the lucky ones that stay that way. Some studies have shown that remission rates are higher when anti-thyroids are taken for approximately 18 months, with 30 to 40% of patients going into remission and remain that way for 10 years and half of those having a recurrence after those 10 years. Patients over in Europe tend to stay on MMI or PTU much longer than American patients as long as their systems can handle it, some as long as a lifetime of maintenance doses once their numbers are under control.

As for finding a decent doctor, you don't necessarily have to have an Endo. Some Internal Medicine doctors, Osteopaths, Naturopaths if you can afford one (Insurance typically doesn't cover), and PCPs will test and monitor your labs for you. To find someone you can try googling for thyroid support groups in your area, even thyroid cancer groups, and contact them to see if they can refer you to someone.

I would also suggest that you have antibodies run, TRab TSI, TPOab, and ask for an ultrasound to see if there is anything physically going on with your thyroid.

As far as thyroidectomy or RAI, I'm biased toward thyroidectomy. RAI takes time to kill your thyroid, might have to be done more than once and is not advised if you have any eye involvement at all. I went through total thyroidectomy on the 6th of this month because I'd had multiple episodes of hyper and wasn't controlled on even high doses of MMI. From this side of surgery I really couldn't be happier. Yeah, I'm very much biased. lol
 

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palbrecht said:
I'm 56 and new to this forum and I need some advice. I was diagnosed with Graves in September after multiple and severe symptoms of hyperthyroidism emerged rapidly over a two week period. I was referred first to a cardiologist who put me on a beta blocker and referred me to an endocrinologist after initial labs came back.

My labs on 10/9 (that I have)
TSH <.006 (normal range .45 - 4.50)
T4 3.66 (normal range .82-1.77)
I also had an RI uptake and a few other labs but I don't have the numbers.
My endocrinologist put me on 30mg/day of Methimazole and continued the beta blocker.

Six weeks later on 11/27, my labs:
TSH .286
T4 0.59
TSH is improving, though still too low, and my T4, ALT, AST and ALCALINE are too high. He lowered my dosage to 20mg/day and discontinued the beta blocker.

I felt absolutely back to normal after 6 weeks on the meds but after the first few weeks, I lost almost all of my sense of taste on this drug and my doctor is recommending RAI if I can't take this medication for a whole year. I am usually a very healthy eater but now, nothing healthy tastes good and it's hard to get myself to eat anything except salty foods. I can only taste a little salt and a little citrus.

I have an appointment on January 2 with my endocrinologist and am hoping to get more information and opinions about this and other possible treatments before proceeding. I would like another endocrinologist's opinion but every other one recommended to me is either not taking new patients or takes months to get in to.

I am also having a lot of problems with my hands swelling and have developed a trigger finger. My doctor says that this is not related to Graves or the medication but I have my doubts.

Does anyone have any help for me?


I do hope you can get the results of the RAIU and post them here as cancer needs to be ruled out. Sometimes the two go hand in and and since you seem to have had a rapid onset (acute), that makes me think this should be considered.
 

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I wish you the best. The other posters have given you very good answers.
 

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Discussion Starter · #5 ·
I go back to the endo in 2 days to redo my blood work and will request all the tests you suggested and get all the other numbers. I was originally not suppose to go back until the end of January but because my ALT was 3 times normal at 102 (normal 0-32), and ALCALINE twice normal at 294 (25-150), I think he was a little concerned about my liver. I do know he said none of my numbers or my ultrasound look like cancer and strongly discouraged surgery. I will inquire about the other medication as well, as this taste thing is much worse than I would have ever imagined. I really WOULD like to be one of the lucky ones and go into remission.

Anyone have any real down sides on doing the RAI?
 

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palbrecht said:
I go back to the endo in 2 days to redo my blood work and will request all the tests you suggested and get all the other numbers. I was originally not suppose to go back until the end of January but because my ALT was 3 times normal at 102 (normal 0-32), and ALCALINE twice normal at 294 (25-150), I think he was a little concerned about my liver. I do know he said none of my numbers or my ultrasound look like cancer and strongly discouraged surgery. I will inquire about the other medication as well, as this taste thing is much worse than I would have ever imagined. I really WOULD like to be one of the lucky ones and go into remission.

Anyone have any real down sides on doing the RAI?
I was not offered any alternative at the time; this was late 80's. It turned out I had to have RAI 3 times because I was in the advanced state of Graves' having had a Thryoid Storm. To be honest w/you, this was an emergency and surgery could have been very life-threatening due to thyrotoxicosis.

That said; it bothers me a lot that I personally will never know if I had cancer. Knowing has a lot to do w/treatment options for one.

 
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