[PhysChic]

#1184153

Liz,

Seriously, if my experience is anything like yours sounds like, it would be an absolute dream!!! I would love to go home that quickly (and I have no intention of staying in the hospital overnight).

Fortunately, the endo I’m switching to specializes in thyroid nodules and is part of a thyroid cancer clinic, so I’m hoping that’s good enough. That and I’m hoping that I can maybe convince my PCP to order the biopsy (and maybe even renew my methimazole prescription while I wait for the new endo) so I can bypass my current endo completely. I guess I could talk to him about whether he thinks I should start with an endo or a surgeon too. That appointment is not until the 26th though .

I know I’ll have lots more of it to come, but waiting sucks.

[snelsen]

#1184150

Hi Physchic,

You have come a long way since your first post! Yah! Yay! I totally
“get” why you would like to get the biopsy. So, even though you are in doc and insurance transition, hang out that need, say that you want the biopsy asap. That is what you can tell the new doc, the surgeon, (optimally, schedule to have done when you see him/her. ) The barrier you might meet, is that the doc will want to see you first. Your PCP could order it, but a surgeon is the person to do it! And that is probably good medicine. The only issue I see with this, is that it usually has to be scheduled, with the right staff, and that might be challenging for you to Cause that is what you do want! (: The more information you have, the less anxiety you will have about the information you DON’T have! A biopsy is nothing.

I had my thyroidectomy while I was still toxic (other hame for hyperthroidism is thyroid toxicosis, which was used when I had my surgery in 1959. I THINK it was 1959, I’ll have to check to see what I wrote below!

**Another brilliant suggestion. Call the surgeon’s office this Monday, tell them to call you with any cancellations that are earlier than your appointment. it happens all the time!!!!!!

Shirley

[PhysChic]

#1184154

So, I don’t particularly like wasting time and money (tolls, parking, copay) on doctor visits. And I definitely hate doing it when it feels like nothing gets accomplished at the visit, which is how visits with my current endo feel. She still hasn’t responded to my e-mail updating with these lumps!!! grrr….

However, I got impatient over the weekend and e-mailed my new endo (as of March anyway) about the lumps, explained that I can’t get a response from my current endo, and asked for his opinion. This morning, he e-mails back and I get a call from his secretary an hour later setting up an ultrasound and biopsy appt the day after my first appt with him. Seriously, I’ve yet to have an appt with this guy and I already love him!!!!!!!

In the meantime, I managed to get access to my new prescription benefit online account and requested a conversion of my MMI prescription to a 90-day mail order. My endo refused, but allowed a 60-day mail order (which is annoyingly more expensive that the 90-day one). BUT, the order has already shipped, meaning that, once it arrives, I will have more than enough pills to last until the visit with my new endo. I am seriously considering cancelling my next/last appt with my current endo to avoid the hassle of another pointless appt (especially with my ultrasound/biopsy already on the books). And, to top it all off, I discovered that my new endo ALSO specializes in internal medicine so I may be able to assign him as my PCP (at least in the short term) and avoid having to waste the time on a PCP visit just to get a referral to him.

Anyways, all things considered, it’s been a pretty good day . Anyone have any advice on skipping (or not) my next endo visit? FYI- the visit was going to be 4 weeks after my last visit and, if I cancel it, I will have 10 weeks between visits. I just started meds a month ago.

[Kimberly]

#1184155

Hello – Sounds like you found a gem of a new doctor! Personally, though, I would keep the other appointment for now – 10 weeks is a long time to wait in between appointments when you are first starting out on methimazole. Most people have adjustments done around every 4 weeks until levels stabilize. You don’t want to put yourself in a position 10 weeks from now where you are really hyper or really hypo because meds haven’t been adjusted.

[JHinrichsen]

#1184156

At age 53 I was diagnosed with Graves and felt he same way. What you are experiencing is ‘normal’ for Graves patients. I chose RAI and while it provided relief for 7 years. I now diagnosed with breast cancer likely from the radiation as there us no family history. At the time I was also just starting menopause and put in hormones. Yet another increase in risk. So thanks to the medical advice I got 7 years ago are now possibly going to cost me my life. Those two medicines made my risk 73 percent likely to get breast cancer. In retrospect I would choose surgery.

[Kimberly]

#1184157

Hello – I commented on the other thread, but I don’t think that the 53% statistic (for RAI) that was posted on another website is correct. (EDIT: See my comments on the other post – I think I tracked down the study they were talking about, and the increased risk was for patients treated with RAI for overactive nodules).

I know that there are others here who are survivors, and I hope they will chime in with their experiences.

When it comes to making treatment decisions with Graves’, all we can do is look at the risks/benefits of ALL three treatment options, and make the best decision we can with the information that was available at the time.

It looks like we were diagnosed with Graves’ at around the same time, and surgery was never discussed with me as an initial treatment option – however, we are seeing more patients now go this route from the beginning, rather than pursuing antithyroid meds (which I took for 7 years) or RAI.

Wishing you all the best.

[quocjchau]

#1184158

I want to thank you all for all those posts sharing all your experiences.

I was diagnosed with grave disease back in Jan 2015. I have been on Methimazole since then (started with 5mg daily and now up to 15mg because my tsh and t4 are still not within normal range). My endo (a Kaiser Permenante doctor) has been repeatedly urging me to take the radioactive iodine pill to zap my thyroids and to be on hormone therapy for rest of my life. Can Kimberly, Shirley, Liz or JHinrichsen let me know whether that iodine pill treatment is the same as “RAI” that I have seen gets mentioned in all previous posts? I sure hope it is not the same as what JHinrichsen wrote in her post.

My 5/13/16 blood test results indicate my t4 and tsh are very close to the normal range(not there yet) so I am torn between continuing with the medicine or following my endo’s recommendation of taking that radioactive iodine pill.

Thank you all for taking the time to share and good luck to all of us with Graves’ Disease!

[Kimberly]

#1184159

Hello – Yes, RAI = Radioactive Iodine. Definitely do your research and understand all the risks before pursuing this option. The “Treatment Options” thread in the announcements section of the forum has a couple of nice links that go through the risks and benefits of antithyroid medications, surgery, and RAI.

If you are feeling well and your levels are close to stable, you might even seek a second opinion before going the RAI route. We have members here who have been happy with this treatment option – but once you make the choice to do RAI or surgery, you don’t get a “do-over”!

[quocjchau]

#1184160

Kimberly wrote:

Hello – Yes, RAI = Radioactive Iodine. Definitely do your research and understand all the risks before pursuing this option. The “Treatment Options” thread in the announcements section of the forum has a couple of nice links that go through the risks and benefits of antithyroid medications, surgery, and RAI.

If you are feeling well and your levels are close to stable, you might even seek a second opinion before going the RAI route. We have members here who have been happy with this treatment option – but once you make the choice to do RAI or surgery, you don’t get a “do-over”!

Hi Kimberly,

Thanks for the 2 quick replies to my posts. I followed your suggestion and arrived to the “treatment options” and read your prior post (April 22, 2012). I was able to print Dr. David S. Cooper’s article but running into trouble trying to find the ATA article. I click the link listed in your article using both methods (direct click and via open new tab and/or window). Both I got this instead “2015 American Thyroid Association Management Guidelines for Adult Patients with Thyroid Nodules and Differentiated Thyroid Cancer: The American Thyroid Association Guidelines Task Force on Thyroid Nodules and Differentiated Thyroid Cancer” but your post says I need to get to http://www.thyroid.org/wp-content/uploads/publications/guidelines/thy.2010.0417.pdf. Is it possible the link has been replaced or changed. I tried searching within ATA’s website but couldn’t find the 2010 article. I know you are much familiar with the subject so can you help me by looking into locating that exact article. Thank you so much Kimberly!

James

[Kimberly]

#1184161

Hello – The ATA did move some stuff around, but that link used to direct to the new location. I will check this out in the a.m., but in the meantime, try this one:

http://online.liebertpub.com/doi/pdf/10.1089/thy.2010.0417

Here is the new page for all the ATA guidelines:

ATA Professional Guidelines

[frankenstrat]

#1184162

If you feel your doctor is brushing you off or ignoring you, it might be time for a new doctor. The first one I went to just wanted to rush me to RAI. Even after I left the office (almost in tears from fear), they called me the next day scheduled for a procedure I never agreed to. I found a new doctor immediately – who listened to me and all my concerns/issues. Graves can be scary and frustrating, so having the right doctor behind you is important.

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