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#1 kristiemarie

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Posted 05 September 2013 - 08:06 PM

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Hi all! I'm about to make a major decision and thought I'd consult some folks who've btdt.

I was diagnosed in 2003. I was pushed to do RAI, refused and found an endo who would medicate me. In 2006, I went into remission. I've been there, med free, until now. About 9 months ago, I started feeling off. Deep inside, I knew it was back. Tests confirmed it in July. Graves has returned. My current endo said that a permanent treatment is best because I've already been in and out if remission, it will come back again. And this time, I do have to say, I went down hill VERY quickly. Within the span of a few months, I was feeling nearly as bad as I did when I was sick for nearly two years the first time. She pushed RAI. I said no. I spoke with a surgeon and after looking at my thyroid, he says surgery is probably the best option. My entire thyroid is shot. It's one big toxic nodule. So he said it would be total.

Fast forward....my endo raised my meds and now I have all these side effects! I know it's the meds. I did PTU back in 03 and it gave me gastrointestinal issues.

I've heard horror stories regarding everything. I don't want surgery but I also don't want to be sick anymore. The last sets of labs are below.

July- 10mg Methimazole 1x day and 20mg propranolol (10mg 2x day)
FT4- 3.8 (.8-1.8)
FT3- 13.5 (2.3-4.2)
TSH- .002 (.55-4.78)

Aug 20- 10mg Methimazole 1x day and 20mg propranolol (10mg 2x day)
FT4- 3.5 (.8-1.8)
FT3- 9.7 (2.3-4.2)
TSH- .005 (.55-4.78)

Aug 29- 20mg Methimazole 2x day and 60mg propranolol (1 extended tab)
FT4- 2.24 (.8-1.8)
FT3- ?? (2.3-4.2)
TSH- .02 (.55-4.78)

I'm torn. I want this to be over. I think that i respond very well to the meds and I'm afraid i'll be fighting hypo all the time anyway. But I obviously don't want surgery or to be without a thyroid because ill be hypo by default.. There is no winner here. I don't know which is easier or more desirable.

Do I want to risk remission and the possibility that ill be worse next time I relapse?

Is this inevitable that I need a permanent solution? I hate feeling sick.

Any advice appreciated.


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#2 Pam_L

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Posted 05 September 2013 - 09:54 PM

Welcome Kristie,

 

Such drama !

 My entire thyroid is shot. It's one big toxic nodule

I have no idea what she means. There is no such thing. But, hey .. surgeons always recommend surgery, that's how they get paid. So try to let that icky feeling go. There really is no such thing as a thyroid that's one big toxic nodule.  

 

My recommendation is to take all this is measured baby steps. First you want to get your thyroid levels back to your personal normal, before you even consider such a drastic step as surgery, or RAI. Those things will always be there, no matter how many years pass. There's no going back though once such a step is taken.

 

Your levels are coming down nicely, even though the MMI was not prescribed correctly. When first treated the MMI must be taken in split doses due to the speedy metabolism. Taking it only once a day was slowing the production down for the first 4 to 6 hours, but then you were left to swing back towards hyper the rest of the 24 hours. This is one of those places where doctors that are not skilled with ATDs, determine the drugs don't work, all because they don't prescribe them correctly. :(

 

So now that you are getting close to the reference range with your FT4, and nearing the time to do the first dose reduction, they have doubled your dose. :o

 

Here's where my years in groups like this can be an asset. Over the years, long term friends I have known that did have a Graves' flare up after being in remission for awhile, have without exception caught it earlier each time, started on meds sooner each time, and gotten stable sooner, moving to the next remission sooner each time. The group member that several here will remember was our Annie. She experienced Graves' , the good and the bad, long before this group came into existence. Before we had the accurate lab tests we have today.

 

Was it Annie or someone else that their last trip hyper and meds lasted just over 4 months ? Shoot, I can't remember now.

 

Her technique was simple. She took Tapazole until the smallest dose made her hypo, then quit. She did have several flare ups, each shorter and easier. Last I remember she came back here telling us she had finally slid hypo without any meds, and had started on replacement hormone. She told us she calculated her time on Tap at about 3 1/2 years total out of about 30 years total. Annie was one of many that inspired me, and remains so to this day. I'm at 11 1/2 years in remission, fearing only the possibility of going hypo naturally. Doctors have failed me in the past regarding being willing to prescribe an adequate amount of replacement hormone for me to be -normal for me-. And unfortunately we need a written prescription to buy the stuff. :angry:

 

 I know plenty of doctors say otherwise, but my belief is that the difference is our group members have learned a lot during the previous active Graves' phase, and are much better able to not repeat their earlier errors.

 

Hang in there. Your getting closer to right. Now so much is up to you. You said you felt it coming on. If it ever pops up again after the next remission, I bet you won't wait quite so long to go in and get started on meds. One mistake on the check list of 'don't want to do that again'. I totally get it. I can imagine doing the same exact thing myself. :wub:

 

Beautiful job on this first post. Clear, to the point, labs easy to read, and we even got another " my doctor said what ? " drama to tack up on the endo wall of shame.



#3 cd3764

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Posted 05 September 2013 - 10:16 PM

Welcome!

 

Sorry for the reason you're here but, glad you found us.

 

As always, Pam gave you great information!

 

I will not deny that your doctor's comments scare me.....and so does the way you're being medicated.

 

Without a doubt, your doctor should have told you to divide your dose for all the reasons Pam mentioned.

 

Also, please know that the hyperthyroidism treatment guidelines indicate that the patient is to take the lowest possible dose that

will maintain the FreeT4 level near the high end of the range, regardless of TSH.

 

Well, as Pam already observed, you''re almost due for a dose reduction yet your doctor doubles your dose!  

 

I suspect your doctor is erroneously looking at your TSH....trying to get it to increase when our Graves'  antibodies keep it suppressed.

 

If you opt for a permanent treatment and remain under the care of your current doctor, I suspect you will feel quite unwell.      Doctors

who look at TSH for dosing decisions will look at a typical Graves' patient's TSH (low/suppressed), declare us hyper and not prescribe

enough of the vital thyroid hormone replacement required after surgery.

 

Please consider keeping your thyroid and healing yourself.



#4 Pam_L

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Posted 05 September 2013 - 10:50 PM

Hi Carol !

 

I'm baaack. :lol:

 

It's good to know you and the others will come along and spend more time on the dose part of this question. In fact I was counting on it when I wandered off down memory lane, telling about others that have come along before.

 

@Kristie,

 

What was the date of the first labs ? It just says July.



#5 kristiemarie

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Posted 06 September 2013 - 08:28 AM

I'm sure that the reason for pushing the atds is because she's trying to get me ready for surgery. As for the July labs, the 19.

#6 kristiemarie

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Posted 06 September 2013 - 09:11 AM

I'm still stuck. Thank you for all the input. My first endo back in 2003 refused to even treat me with drugs. I got rid of him. I did achieve remission once so I'm sure it will happen again but how many times? I know I'm talking a risk with synthyroid and I've done enough research to know some people need t3 replacement as well. I'm going to discuss this with my doc at our next appt. if she's unwilling to consider the double t4/t3 treatment, surgery is off the table. I guess at this point in just tired of being sick. It seems like getting rid of my thyroid will solve my problems and it will but I understand there are new problems that come with it. I want to make the best decision for myself in the long run. I don't want to do this again in 6 months or 2 years. But again who's to say I won't be utterly miserable after surgery??

#7 kristiemarie

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Posted 06 September 2013 - 09:16 AM

So maybe I should find an endo who specializes in graves??

#8 IslandIvory

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Posted 06 September 2013 - 12:59 PM

Hi and welcome.

 

Scenario A:

The thing is, GD has to do with the antibodies and to achieve real remission one must have none. This is how it works - Patient takes ATD's for a period of time, checks antibodies, if they are not present, then one must wait about a year (give of take) before they stop the ATD's.

 

Scenario B

If the ATD's are stopped while antibodies are present. then chances are the patient will bounce right back to hypER. This is very very common, and a mistake most doctors and patients make, and both doctor and patient feel ATD's don't work and it would be time for a permanent solution.

 

With scenario A there is a 80% chance at remission, where as with scenario B there is 20-30% chance at remission. And since most doctors will treat using scenario B, they believe remission to be hard to achieve and tell you up front that it is not possible and push for RAI or surgery.

 

If a permanent solution is chosen (RAI or surgery), neither will remove the antibodies and this will cause a whole new set of problems - Eyes, skin, brain etc. This is because the antibodies are free to do as they want and will search for new tissue to destroy. Now, in saying this, RAI is obviously the worst, where as surgery some think - "Hey, if I remove my thyroid wouldn't I be removing all the antibodies too?" Well, even though they had a TT for most part there is still thyroid tissue left behind. The surgeon can not remove 'all' tissue because of vocal cords and parathyroids. No matter how good he/she is this is because both are in the thyroid and the surgeon would rather leave 'some' than damage either of those.

 

So to date, the only thing to remove antibodies is ATD's. And antibodies cause inflammation, this is why it is important to eat the right foods to help fight that inflammation.

 

What I have done is, I have gone and joined a few hypO sites just so I can learn and understand what people go through. And I tell you, there are tens of thousands of people who are miserable because they are hypO. And to be honest, I would rather be hypER because I AM in control of it (even though I have my bad days) but those people, they have absolutely no control. And as Carol said, if you think it's bad now with the doctors, wait till your hypO and can't get out of bed, and they tell you "Your levels are fine."

 

~Ivory



#9 johnsay

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Posted 06 September 2013 - 02:46 PM

Ivary, thanks so much for this very helpful post. Now I know why I would never want to do surgery or RAI in case they suggest it.



#10 ccooney

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Posted 06 September 2013 - 06:27 PM

Hi Kristiemarie,

Sounds like you are all set on a strategy, but just want to put in my "two cents" worth. I went through a year of up and down, hypo and hyper, basically because my doctor overmedicated me at most points and didn't test me often enough. I know you mentioned not wanting to go hypo. There is one other way to treat this disease which are probably already aware of--which is "block and replace". I have been so happy and stable with this treatment, I just feel I should always suggest it as an option. I know some people are not happy with synthroid alone, although I a doing fine on it, but you can always ask for T3/T4. I still have my thyroid, which leaves open a lot of different possibilities for the future, yet I am not roller coastering all the time on ATD's alone.

Best of luck!

#11 mmztcass

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Posted 06 September 2013 - 06:50 PM

Welcome:

 

To add my input, seeing an Endo doesn't really help.  About 80% treat patients with Diabetes more than they do those with thyroids.  Then they are so clueless when it comes how to treat properly.  They often don't dose correctly nor run the 'right' thyroid tests.

 

I see a holistic MD/NMD with a background as an Internist who knows what he is doing.  

 

{{{hugs}}}







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