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Old 08-08-2008, 09:49 PM   #1
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Lucy is back....

I had a tt on June 3 of this year. The next day our town had a tornado. Recovery period was kind of crazy, to say the least. To make a long story short...I was diagnosed with Graves in late Jan. of this year. I was really sick and lost a lot of weight no matter what I ate. I got down to 107 from 117 in a matter of a couple of weeks. I went to my gp and he finally checked my thyroid levels and found my tsh to be .10. I went to an endo and I opted for the tt since rai sounded like a long drawn out process. I started synthroid 1.0 on june 9th. I had to wait 8 weeks to get my levels checked again and just had that done on Aug. 5th. I did get back up to 119 by the time of surgery. Well, I can tell I have been gaining weight and I sleep 10-11 hours at night and then want a nap, too! I weighed 124 on the 5th. So I get the results today, and he is lowering my synthroid to .75 because my tsh was back down to .10 again. When I was on tapazole (I think thats what it was called) and seeing the endo before surgery, my tsh went up to 1.2 and I felt fine. He just kept saying I cant take these pills for life, so make a choice. So, I am so confused now. I thought I would get more synthroid cause I was gaining weight and so tired. I asked if he was going to check the frt3 and frt4 levels and said no. Could some one tell me what the heck is going on with me? I am at a lost and not real happy. I know 124 isnt huge, but at this rate, I will be very large very soon. I eat alot, since I feel better, but this is really scary. I didnt want this to happen. Any advice would be welcome. Thanks.

 
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Old 08-09-2008, 09:26 AM   #2
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Re: Lucy is back....

I hate to say it but I think it's time to find another doctor very soon. TSH levels cannot always be relied on to adjust a person's hormone level. Especially after treatment for hyperthyroidism when the levels of TSH will be all over the board for a while. FT4 at a minimum must be watched and T3 if there's still any problems.

Since you've already had your treatment and are now hypothyroid, there's no reason that you need to be under the care of an endo. Any good doc who's had experience dealing with hypothyroid should be able to adjust your hormone levels til they suit you. It's time to go doctor shopping. You're obvioulys still hypothyroid and reducing your synthroid is just going to make it worse. Go find someone who knows what they're doing.

Good luck.

Last edited by accessn12; 08-09-2008 at 09:27 AM.

 
Old 08-09-2008, 10:22 AM   #3
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Re: Lucy is back....

you see, that's what I don't get. My lab results for tsh was .10 (.50-5.00) when I was so sick with graves and hyper. Now if I am hypo, shouldn't the tsh be in the high range? I am so confused . My tsh read .10 like I am still hyper, in fact that's what the doctor wrote on my note from him. And maybe I didnt explain very well, but this is my 'regular' doctor now, since my endo saw me right after the surgery and dismissed me...said a g.p can take care of me now. He also refused to check the ft3 and ft4.

 
Old 08-10-2008, 03:17 AM   #4
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Re: Lucy is back....

For a period of time after treatment for graves disease, it's possible that for up to a year afterwards, the TSH will not accurately reflect the level of thyroid hormones in your body. Most people's TSH level recovers pretty quickly. Other's don't. That's why the experts recommend following TSH and FT4 until a patient is stabilized and then the TSH level alone can be followed if the patient is doing well with no symptoms.

Hyerthyroidism is much rarer than hypo. I've run into several docs who have never seen it before. I had one tell me that I was only the 2nd one they'd seen in 30 some years and she said it wasn't something that too many docs knew about. Something tells me your regular doc has not treated anyone post hyper treatment although he may have treated many hypos. You're either going to have to educate him or find someone else.

Another option is to go see your ob/gyn for a visit. Isn't it about time for a regular check? Often times they're very good at adjusting thyroid hormone levels or convincing your regular doc to take a closer look and for some reason, they often listen a little more closely and are a lot more sympathetic.

Just a few options. I know you know you're going to have to do something and the whole situation stinks. Just keep pushing til you get to feeling the way you know you should feel.

 
Old 08-10-2008, 09:37 PM   #5
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Re: Lucy is back....

Thanks for your replies. I am so 'uneducated' on this subject, my head swims when i see all the other posts about ft3 and ft4 and other drugs I dont recognize. The regular members on this board seem so smart and have learned so much on their own. I did tell my doctor that just because my thyroid was removed, that doesnt mean I still dont have graves disease....at least that's what I think. I have no idea what to expect in the years to come. I see myself getting big and overweight and depressed. That isnt new to me, as I was always overweight, most my life. I lost weight a couple of years ago and I enjoyed being thin until I got so sick in January. Guess I will be going back to my oldself eventually. I am almost...and I mean almost...sorry that I got my thyroid out. I am not sorry I didnt do rai, though. It has the same outcome. I wish I wouldnt have had to do anything. I just wanted the graves to go away. I didnt want to become a hypothyroid person.

 
Old 08-11-2008, 04:08 AM   #6
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Re: Lucy is back....

Back in '91 when the doc asked me how long I'd had that goiter, all I could respond with was "What's a goiter?". We all have to start somewhere.

I too was pushed to go ahead with RAI. Right off the bat. However, I've got this stubborn streak and didn't like the sound of it so I started researching and said absolutely not. The other thing was I did not have a typical case of hyperthyroidism and they couldn't tell me what I had. More research. Turns out I not only did not have a typical case, I have a rare disorder. You learn a lot along the way.

You are correct. You still have graves. You are hypothyroid due to treatment for graves. It doesn't mean you can't feel good again. The woman who draws my blood has graves. She had her thyroid removed many years ago. She hasn't had a lick of trouble although she does have slight eye disease. She says she feels great. What's interesting is she knows very little about her disease. She just has a doctor with some common sense who knows how to make a person truly euthyroid.

A lot of docs refuse to go by anything but the magic TSH. Usually they'll get by with that but it will not work for those who's TSH does not show their true status. Everyone has their unique feel good place and that's what you've got to find. Sometimes I think they outta trial dose until a person feels good and then take the labs and aim to stay there.

You're going to have to stop being sorry for what's been done. You can't change that and it's a waste of time just grieving over it. Time better spent learning what you can do to fix it. I'll see if I can't dig you up the recommended guidelines for physicians to follow for dosing thyroid hormones after treatment. I've got it around here somewhere but I'm a bit on the disorganized side right now. Hopefully I can find it sometime today. You can print it out and take it to your doc. If he'll read it and agree to follow it, you should do ok. If not, there's no sense wasting time with him and you will have to move on and find someone who will.

In the meantime, there's a lot of great sites that explain the basic workings of the thyroid. A lot of people recommend a book called "Thyroid for Dummies". If you can get an understanding of how a thyroid works, the rest is easier to understand. It'll take away some of the spin factor.

 
Old 08-11-2008, 05:19 AM   #7
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Re: Lucy is back....

Ok. I found it: [url]http://www.thyroidmanager.org/Chapter9/9-frame.htm[/url] This will take you to a chapter. The section you're looking for is called "Treatment". When you print that part out, highlight the part that says this:

"However, patients with Graves' disease who have had radioactive iodine may require dosage adjustments up to as long as 5 to 10 years after treatment is begun. A similar course may be followed by patients who have had subtotal thyroidectomy for Graves' disease due to the slow deterioration of residual thyroid function.

Therapy should be monitored with TSH measurements (using an immunometric assay) and estimates of free T4. As the goal of levothyroxine therapy is to normalize the thyroid status of the patient, and as serum TSH provides the most sensitive and readily quantification of thyroid status in the patient with primary hypothyroidism, one aims at TSH values in the low normal range. Serum FT4 concentrations will generally be above the middle of the normal range or slightly elevated if serum TSH concentrations are normalized, but serum T3 concentrations (predominantly derived from T4-5'-monodeiodination) will be in the midnormal range 11."

Now for g's sake, don't worry about understanding it. This is truly technical stuff. I also copied from the middle of a paragraph. Sorry. But I'll give you a hint. The paragraph starts with "In the patient given what is thought to be a complete replacement dose of levothyroxine (SYNTHROID), a TSH and free T4 index should be measured about 2 months after therapy begins.......". This book was written by some of the most highly respected endos in the world to assist other docs diagnose and treat thyroid disorders. It's a wonderful resource.

I wish you the best of luck.

 
Old 08-11-2008, 10:37 AM   #8
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Re: Lucy is back....

Thank-you for taking the time to do all that research for me. Reading my last post does make me whimpy sounding and crying over spilt milk. I was in a crappy mood last night. I had eaten too much food and knew it. That isnt helping matters either. I do feel better and not puking and having the runs, so the food I eat is sticking around longer. I cant blame everything on my 'level's I guess.
The quotes on graves disease treatment still dont quite apply to me. I didnt have rai and I had a total thyroidectomy. So I should be hypo for sure...but my readings are hyper with a .10 (.50-5.0 as normal ranges). I hate to cut back the medicine to .075, but thats what he is telling me to do. This doctor, who is my gp, took too long in diagoising me in the first place. I went in feeling awful, loosing weight, racy heart..blah, blah...and he never took my pulse or ordered any blood work til I nearly crawled into his office a couple of weeks later. So, I was upset with him from the get go. I hate to change doctors, but might have to. The endo doesnt want to see me anymore, since I am not supposed to be hyper.
Thanks again for all of your good advice. I will see how it goes for awhile and stop complaining. I hate sounding like a whiner. There are so many other awful things that a person could be dealing with other than my silly little problems. My cousin just passed from breast cancer younger than I. I need to get things into perspective.

 
Old 08-11-2008, 02:02 PM   #9
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Re: Lucy is back....

Here you can complain. We all whine sometimes. You got to. But once you get it off your chest, you gotta get off your butt and do something.

There will always be a remnant of thyroid left in a total thyroidectomy. You have 4 small glands called the parathyroid glands attached to the back of the thyroid. You take the entire thyroid and you take the parathyroid glands with it. Then you end up with another set of new problems. Your treatment was more similar to the rai ablative therapy but the same principal applies all the way across the board. The most important part of that quote is the fact that the T4 level must be followed. Somewhere in that book you will also find something regarding the fact that the TSH level often takes quite a while to right itself after treatment and cannot be relied upon.

But I think if you could find a doc who knows what they're doing, you won't have to try and dig thru that whole thing and find it.

You've also gotta realize that thyroid disease is not just a silly little problem. It has a major impact on a person's life. Stop belittling your disease. It can be put in the category of major suck. Believe me, the majority of us here would rather suck snot than have to go thru it. If I sounded callous in my post, I'm sorry. I'm grumpy today too.

 
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