Aa
new Grave's patient
Hi all, I am (my wife - husband posting this, atm) a new hyperthyroid patient. I'm just not happy with my current endo, and feel my GP/PCP + husband (a pharmacist) could have done everything this guy has done so far, and he has poor bedside manner. My history is a bit wierd. 29 yo female, otherwise great health.
About 2000, or before, I put on about 50 pounds from comfort eating, but then lost it all to return to around 115 - 120 lbs (5' 5" tall, so pretty normal) again about 1 year after the gain. BUT my hair got thinner :( I also can't get rid of this last persistent ponch of belly fat, no matter how hard I dieted or exercised. LOTS of exercise... I mean I run 3-5 or more miles every day, and have a VERY healthy semi-vegetarian diet of low calories, lots of milk, high protein, some soy.
Around May 2007, we noticed in a picture that you could kind of see my goiter. July or August 2007, my symptoms got really bad - jittery, tremors, heart racing all the time, hot, insomnia. We immediately went to my doc, a DO. One month later they got me in, and put me on PTU and beta blocker to treat the tachycardia. I was in thyrotoxic crisis, almost, and was lucky I didn't have v-fib or a-fib. My goiter was huge, the biggest the endo had ever seen, and he called in the med students to look at my neck. +300 grams. It really popped out when I looked up a bit with my head. It made the whooshing sound in the stethoscope. My TSH was low, T4 high, and T3 really, really, high, almost off the chart. I don't have all the exact levels with me now.
Now, 1 year later, I went through several months of stepping down the PTU therapy, went off the beta blockers after only about 2-3 months of using them and my heart rate was just fine (~nov 2007). Finally got down to only about 100mg/day of PTU, and still TSH low, T4 low of normal, T3 normal. The endo never did order any thyroglobulin tests, antibody tests, or any hormone, cortisol, or anything else. He insists it is just textbook Grave's Disease, but both my husband and I feel like something else wierd is going on. We were hoping for spontaneous remission on the PTU therapy, but don't think that has happened. I gained from 113 back up to 128 max, now back to 120 lbs.
May 2008, we did the radioiodine therapy at his insistence. Went off the PTU for 1 week, did the labs, TSH, T4, T3 all still low of normal. My 24 hr uptake test was 106% !!!! Ok, how do you suck radioactivity out of thin air into your Thyroid? I guess I did! I then popped the pill. Then all heck broke loose... My endo cancelled my 1 week follow up, I had 5 episodes of moderate to severe nausea within 7 days following, I keep trying to get ahold of the radiologist and endo, but they're both gone, won't call back, WON'T reschedule me with anyone else. My pulse is up slightly. I am starting to feel restless even at night trying to sleep. Finally, I got a call from the endo's office, and a letter, saying they tried to call me. Bullcrap, I have caller ID :P I know they're lying. KU Med is pissing me off, and I want to go back to my PCP who is a DO, or try to find someone else in the Kansas City area, in my network. Stupid HMO's.
Now, 3 weeks after my radioiodine, still no doctor visit :( I ran a triathlon this weekend, a half-marathon 1 month ago, and otherwise feel fine, except the thin hair going on 8 years or more now, and persistent tummy ponch, and my angst against my Endo Dr. Does anyone have a similar story? some comfort? some suggestions?
About 2000, or before, I put on about 50 pounds from comfort eating, but then lost it all to return to around 115 - 120 lbs (5' 5" tall, so pretty normal) again about 1 year after the gain. BUT my hair got thinner :( I also can't get rid of this last persistent ponch of belly fat, no matter how hard I dieted or exercised. LOTS of exercise... I mean I run 3-5 or more miles every day, and have a VERY healthy semi-vegetarian diet of low calories, lots of milk, high protein, some soy.
Around May 2007, we noticed in a picture that you could kind of see my goiter. July or August 2007, my symptoms got really bad - jittery, tremors, heart racing all the time, hot, insomnia. We immediately went to my doc, a DO. One month later they got me in, and put me on PTU and beta blocker to treat the tachycardia. I was in thyrotoxic crisis, almost, and was lucky I didn't have v-fib or a-fib. My goiter was huge, the biggest the endo had ever seen, and he called in the med students to look at my neck. +300 grams. It really popped out when I looked up a bit with my head. It made the whooshing sound in the stethoscope. My TSH was low, T4 high, and T3 really, really, high, almost off the chart. I don't have all the exact levels with me now.
Now, 1 year later, I went through several months of stepping down the PTU therapy, went off the beta blockers after only about 2-3 months of using them and my heart rate was just fine (~nov 2007). Finally got down to only about 100mg/day of PTU, and still TSH low, T4 low of normal, T3 normal. The endo never did order any thyroglobulin tests, antibody tests, or any hormone, cortisol, or anything else. He insists it is just textbook Grave's Disease, but both my husband and I feel like something else wierd is going on. We were hoping for spontaneous remission on the PTU therapy, but don't think that has happened. I gained from 113 back up to 128 max, now back to 120 lbs.
May 2008, we did the radioiodine therapy at his insistence. Went off the PTU for 1 week, did the labs, TSH, T4, T3 all still low of normal. My 24 hr uptake test was 106% !!!! Ok, how do you suck radioactivity out of thin air into your Thyroid? I guess I did! I then popped the pill. Then all heck broke loose... My endo cancelled my 1 week follow up, I had 5 episodes of moderate to severe nausea within 7 days following, I keep trying to get ahold of the radiologist and endo, but they're both gone, won't call back, WON'T reschedule me with anyone else. My pulse is up slightly. I am starting to feel restless even at night trying to sleep. Finally, I got a call from the endo's office, and a letter, saying they tried to call me. Bullcrap, I have caller ID :P I know they're lying. KU Med is pissing me off, and I want to go back to my PCP who is a DO, or try to find someone else in the Kansas City area, in my network. Stupid HMO's.
Now, 3 weeks after my radioiodine, still no doctor visit :( I ran a triathlon this weekend, a half-marathon 1 month ago, and otherwise feel fine, except the thin hair going on 8 years or more now, and persistent tummy ponch, and my angst against my Endo Dr. Does anyone have a similar story? some comfort? some suggestions?
That's kinda what I figured - these tests are important, and there's no point to rushing into a diagnosis or not having definitive proof. I'd really, really, REALLY hate to have had transient idiopathic thyroiditis or something this whole time, that would have self resolved, instead of actual Grave's disease. Oh, I'm so mad at them...
The first Endo I ever saw was a diabetes specialist. He's an excellent doctor to go to if you have diabetes.
He looked at a copy of my bloodwork that showed I was so hyper most of the results were flagged with an H or an L. He told me I was hypo and needed to go back on my Synthroid. :/
I'm still sort of miffed that I was charged for the visit.
If your DO is sharp, he can monitor you until you get leveled out. It may take a year to get your med dosage straight.
I had RAI in January. My dose was changed six weeks ago. It was changed again yesterday. It will probably get changed again. Right now I'm getting tested every six weeks. A TSH and a Free T4. If I were on NO meds, I would test every three or four weeks.
The reason an ultrasound should have been run is because that is always the first step. See what the gland looks like, inside and out. It's just the way the decision making process goes.
The reason you should have antibody testing is to MAKE A DIAGNOSIS before you destroy a gland, or treat it, for that matter. Your experience with PTU indicates you probably have Grave's disease, but it's not definite. It sounds like the gland needed to go, but you still need antibody testing.
At the very least a TPOab, Thyroid Peroxidase antibodies.
A TSI would have confirmed Grave's, and it's not an expensive test. There is no excuse for not running antibody tests.
If you have Grave's, which is an autoimmune disease, you will always manufacture the antibodies. If you have a high TPOab, that can lead to other autoimmune conditions. So you need to know this stuff. It affects how you need to look after your health in the future. If your TPOab is 85, no big deal. If it's 1,800, big deal.
That's a large part of why they are tested in the first place. Your Endo was saving someone money at your expense.
He looked at a copy of my bloodwork that showed I was so hyper most of the results were flagged with an H or an L. He told me I was hypo and needed to go back on my Synthroid. :/
I'm still sort of miffed that I was charged for the visit.
If your DO is sharp, he can monitor you until you get leveled out. It may take a year to get your med dosage straight.
I had RAI in January. My dose was changed six weeks ago. It was changed again yesterday. It will probably get changed again. Right now I'm getting tested every six weeks. A TSH and a Free T4. If I were on NO meds, I would test every three or four weeks.
The reason an ultrasound should have been run is because that is always the first step. See what the gland looks like, inside and out. It's just the way the decision making process goes.
The reason you should have antibody testing is to MAKE A DIAGNOSIS before you destroy a gland, or treat it, for that matter. Your experience with PTU indicates you probably have Grave's disease, but it's not definite. It sounds like the gland needed to go, but you still need antibody testing.
At the very least a TPOab, Thyroid Peroxidase antibodies.
A TSI would have confirmed Grave's, and it's not an expensive test. There is no excuse for not running antibody tests.
If you have Grave's, which is an autoimmune disease, you will always manufacture the antibodies. If you have a high TPOab, that can lead to other autoimmune conditions. So you need to know this stuff. It affects how you need to look after your health in the future. If your TPOab is 85, no big deal. If it's 1,800, big deal.
That's a large part of why they are tested in the first place. Your Endo was saving someone money at your expense.
Labs being done tomorrow morning. TSH, T3, T4. I'm having them copied to my DO as well as the endo, but I think I'm done with him. Neither the endo or the radiologist responded to my email & phone message about nausea and pulse elevation, they just said "sorry we were out of the country last week".
no :( Of course not... he literally said any antibody or ultrasound tests were "extra" and a waste of time and money, that this was "textbook" he was almost positive. Well obviously it is not textbook, or my TSH would have gone up while my T3/T4 were low during PTU therapy this past year. TSH was always low or low of normal.
I'm not worried about cancer due to no nodality, and neither was the endo... still, it would be nice to rule it out 100%. True.
KU Med's endo department specialises in diabetes treatment anyways, not thyroid disorders. We should have known it was a mistake before we ever started :/ We just couldn't find anyone else in the Kansas City area, and this specialist down in Wichita charges about $1000 per visit, and not in our network.
I'm not worried about cancer due to no nodality, and neither was the endo... still, it would be nice to rule it out 100%. True.
KU Med's endo department specialises in diabetes treatment anyways, not thyroid disorders. We should have known it was a mistake before we ever started :/ We just couldn't find anyone else in the Kansas City area, and this specialist down in Wichita charges about $1000 per visit, and not in our network.
Endo's are people too. There are good ones and bad ones.
You need to find a better Endo, ASAP. Your DO may be able to handle your case at this time if he/she is knowledgeable on the disease and the effects of RAI ablation. If not, perhaps the DO could refer you to a competant Endo.
Finding a GOOD Endo would be the best idea, as there may be issues that come up that are out of the DO's area of expertise.
Radioactive Iodine ablation is a slow process. It takes months to work. You should not push yourself too hard in the meanwhile. You should have a TSH and a Free T4 run at least once a month for the next five or six months. Eventually you will probably go hypo and need T4 hormone replacement, like Levoxyl or Synthroid.
You should also have several antibody tests run. Even though you now officially have no thyroid (it's still there), you need to know what antibodies you carry.
Was there at least an ultrasound done? Was the risk of thyroid cancer ruled out? Low dose RAI will not eradicate thyroid cancer. That's a discussion worth having if the risk of thyroid cancer has not already been ruled out. Best of luck with the search for a new Endo.
You need to find a better Endo, ASAP. Your DO may be able to handle your case at this time if he/she is knowledgeable on the disease and the effects of RAI ablation. If not, perhaps the DO could refer you to a competant Endo.
Finding a GOOD Endo would be the best idea, as there may be issues that come up that are out of the DO's area of expertise.
Radioactive Iodine ablation is a slow process. It takes months to work. You should not push yourself too hard in the meanwhile. You should have a TSH and a Free T4 run at least once a month for the next five or six months. Eventually you will probably go hypo and need T4 hormone replacement, like Levoxyl or Synthroid.
You should also have several antibody tests run. Even though you now officially have no thyroid (it's still there), you need to know what antibodies you carry.
Was there at least an ultrasound done? Was the risk of thyroid cancer ruled out? Low dose RAI will not eradicate thyroid cancer. That's a discussion worth having if the risk of thyroid cancer has not already been ruled out. Best of luck with the search for a new Endo.
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