# Back from the new Endo..



## christina20003 (Sep 27, 2011)

Well, I had my consult with my new endo last friday. I actually spent almost an hour with the dr. The nurse had told me that I would over the phone but I didn't believe her. 

He said that I was very hyper based on the labs my PCP did 2 weeks before. He increased my dose of methimazole to 30mg a day. Sorry, I didn't get the numbers. I don't know why they don't share the numbers automatically. I think it would make sense to share what they tested, what the levels are and what they're supposed to be. I'm going to call and get them when I get time and start keeping my own log.

He is going to run more labs in January and I'll see him again in February. I was disappointed that he doesn't consider surgery as a possible treatment option. He said that was the primary treatment a long time ago but that almost no one does it any more since there's RAI. I was afraid that he was going to be pushing that. Pretty much he gave me 2 options. 1. Stay on the AT meds and hope for remission, or 2. Do RAI treatment.

I told him that my husband and I want to do fertility treatment this year, and what would be the best treatment for being able to do that sooner. He thought continuing on the meds would probably be the best for that.

What are your opinions about staying on the AT meds as a treament for Graves? I like the idea that we would be able to start trying for a baby once my levels are back in control. It sounds like with RAI, you have to wait a minimum of 6 months.

I could continue with the meds until I'm done having kids, then do RAI? I guess I need advice.


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## Andros (Aug 26, 2009)

christina20003 said:


> Well, I had my consult with my new endo last friday. I actually spent almost an hour with the dr. The nurse had told me that I would over the phone but I didn't believe her.
> 
> He said that I was very hyper based on the labs my PCP did 2 weeks before. He increased my dose of methimazole to 30mg a day. Sorry, I didn't get the numbers. I don't know why they don't share the numbers automatically. I think it would make sense to share what they tested, what the levels are and what they're supposed to be. I'm going to call and get them when I get time and start keeping my own log.
> 
> ...


My advice would be to press for surgery. If necessary, see another doctor. I don't even think you can nurse your baby if you are on anti-thyroid meds and anti-thyroid meds are also damaging to your liver re long-term use.

Not to mention that even on the anti-thyroid meds, sometimes temperment is not stable. I know mine wasn't.

Plus, if you have RAI, you will never know if you have cancer or not.

Just humble opinion.

Others will have input as well.


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## Linty (Aug 25, 2011)

Christina, sorry he didnt give you other options.

I was prescirbed meds that containe carbimazole and wasnt safe for ttc or pregnancy. In our country we dont have other AT meds like PTU or i cant remember the other ones. So the chance to get pg is slim with the carbimazole. The reason why id didnt choose RAI was because of the waiting period. So my surgeon suggested the only option then is surgery to remove the thyroid and put me on thyroidmeds which is safe to use for ttc and during pg. I really hope you get answers soon en hopefully we will be able to hold prescious bundles soon. :tongue0015:


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## christina20003 (Sep 27, 2011)

Thanks for the advice. I think I will question him more about surgery on my next visit. I'm also going to do more research on the long term side effects of the AT meds. He didn't seem worried about me taking them during pregnancy and said that I would probably go off them during the third trimester. Although I read there could be some risk to the fetus? He said I would probably have to go back on them after the birth and wouldn't be able to nurse after that. He seemed to think I might get up to 3-4 months of nursing in though. This month marks 3 years trying to conceive and my 37th birthday, so I'm anxious to get started with the fertilty treatments as soon as I can. My biological clock is in overdrive right now!


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## Koof (Nov 9, 2011)

If you are TTC, I would recommend the book Taking Charge of Your Fertility before you try meds. Even if you need them, the information you can get from tracking your cycle will help you get pregnant faster and pinpoint possible fertility problems quicker and hopefully you will spend less $ on treatments. I have had several friends use the methods in the book and become pregnant before needing meds and one was able to tell her doc exactly what she thought the problem was when she visited the fertility clinic.

Good Luck!!!:hugs:


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## Koof (Nov 9, 2011)

BTW, there is even a tiny section on charting your cycle with thyroid issues:a1Thyroid:


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## christina20003 (Sep 27, 2011)

Koof said:


> If you are TTC, I would recommend the book Taking Charge of Your Fertility before you try meds. Even if you need them, the information you can get from tracking your cycle will help you get pregnant faster and pinpoint possible fertility problems quicker and hopefully you will spend less $ on treatments. I have had several friends use the methods in the book and become pregnant before needing meds and one was able to tell her doc exactly what she thought the problem was when she visited the fertility clinic.
> 
> Good Luck!!!:hugs:


Thanks for the advice. Unfortunately, I did all that for almost 3 years. I have had mostly normal cycles with ovulation every month. I charted and used opks for a long time, and then stopped to try the "relax and it will happen" method(which is crap). After getting tested, we found out my husband has a very low sperm count. Natural conception is probably not going to happen with his numbers


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## Whippetcat (Jun 13, 2011)

Plus, if you have RAI, you will never know if you have cancer or not.

*Andros, a question for you: Is cancer sometimes found in patients whose only reason for surgery is Graves? Do they biopsy every thyroid that is removed, even if not suspicious for cancer?*


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## joplin1975 (Jul 21, 2011)

Whippetcat said:


> Plus, if you have RAI, you will never know if you have cancer or not.
> 
> *Andros, a question for you: Is cancer sometimes found in patients whose only reason for surgery is Graves? Do they biopsy every thyroid that is removed, even if not suspicious for cancer?*


Not Andros  but the answer is yes and yes. (ALL tissue removed is sent to pathology.)


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## Andros (Aug 26, 2009)

Whippetcat said:


> Plus, if you have RAI, you will never know if you have cancer or not.
> 
> *Andros, a question for you: Is cancer sometimes found in patients whose only reason for surgery is Graves? Do they biopsy every thyroid that is removed, even if not suspicious for cancer?*


It sure is. They go through the gland with a fine tooth comb. Many w/hyper have found to have cancer and they did not know it.

Here is info.

Thyroid cancer in patients with hyperthyroidism.
http://www.ncbi.nlm.nih.gov/pubmed/12876418


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## Andros (Aug 26, 2009)

Whippetcat said:


> Plus, if you have RAI, you will never know if you have cancer or not.
> 
> *Andros, a question for you: Is cancer sometimes found in patients whose only reason for surgery is Graves? Do they biopsy every thyroid that is removed, even if not suspicious for cancer?*


I think this would be something to discuss w/your surgeon. Let it be known that you want to know. I would think that every gland would be checked but what I think and what really happens are 2 different things. Sad, but true.


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## Whippetcat (Jun 13, 2011)

Andros said:


> It sure is. They go through the gland with a fine tooth comb. Many w/hyper have found to have cancer and they did not know it.
> 
> Here is info.
> 
> ...


Thanks Andros. Reading that link, it appears that no cases of cancer were found in Graves' patients, though, which is good news for me. I had an uptake three years ago that defined my problem (once again) as Graves. I was a bit concerned recently only because I've noticed that one side of my thyroid remains enlarged. I returned to taking ATD after having relapsed this year (TT is scheduled for 12-27), and I don't remember having a one-sided enlargement in my various other go-rounds with Graves. Hoping it's just an anomaly and means nothing, but gave me food for thought .....

Thanks again for the info.


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## Koof (Nov 9, 2011)

christina20003 said:


> Thanks for the advice. Unfortunately, I did all that for almost 3 years. I have had mostly normal cycles with ovulation every month. I charted and used opks for a long time, and then stopped to try the "relax and it will happen" method(which is crap). After getting tested, we found out my husband has a very low sperm count. Natural conception is probably not going to happen with his numbers


Darn! I wish it had helped. Good luck then


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## christina20003 (Sep 27, 2011)

All this advice is great! Surgery really seems like a legitimate treatment option to me, so I bummed that the endo made it sound like no one has it done anymore, at least for Grave's. From what I've read on here, it seems more common that he's making it out to be. Although it looks like people have it for many reasons besides Grave's. I've definitely decided against RAI anytime in the near future, so it's either stick with the meds or have the surgery. What do think is the best way to approach the surgery topic at my next visit? I don't want it to sound like I want it just because I read about it on the internet. I know I have to advocate for myself, but sometimes that's easier said than done.

I should probably mention that apparently I've never been officially diagnosed with Grave's either. That's how bad my first endo was. He led me to believe that I had it, but never did all the tests, like the uptake and scan. The new endo is going to do the scan after he gets my levels down I guess. He did say it was likely that its Grave's based on my symptoms.


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## Linty (Aug 25, 2011)

Christina, my endo did a scan (sonar) of my thyroid and then did the normal Freet4, free t3 and tsh and the antibodies test so she confirmed the Graves. The first thing surgeon said is that he had to make diagnosis if it is Graves or not and i told him what the endo said and he told me then if i want to be pg he had to remove because the only meds safe is those taken to replace thyroid "working"
So you have to get someone to make the right diagnosis. Again good luck and hope you get answers soon.

Koof, i had a look at that taking charge website and its really nice, will certainly get everything to read.


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## christina20003 (Sep 27, 2011)

Linty said:


> Christina, my endo did a scan (sonar) of my thyroid and then did the normal Freet4, free t3 and tsh and the antibodies test so she confirmed the Graves. The first thing surgeon said is that he had to make diagnosis if it is Graves or not and i told him what the endo said and he told me then if i want to be pg he had to remove because the only meds safe is those taken to replace thyroid "working"
> So you have to get someone to make the right diagnosis. Again good luck and hope you get answers soon.
> 
> Koof, i had a look at that taking charge website and its really nice, will certainly get everything to read.


Thanks for that info. I do worry about the side effect of the AT meds during pregnancy. I have decided that I will ask him about the surgical option, and tell him I at least want a consult with a surgeon.


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## katbid23 (Oct 20, 2010)

I was dx with Graves and then found out I had nodules. Endo said he was removing the thyroid because of Graves. Turned out to be cancer after all. You just never know.


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## Andros (Aug 26, 2009)

katbid23 said:


> I was dx with Graves and then found out I had nodules. Endo said he was removing the thyroid because of Graves. Turned out to be cancer after all. You just never know.


That is 100% correct!! Thank you for getting the word out! Hope you are feeling better these days?


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