[Kimberly]

#1064347

Hello and welcome to the boards! Sorry to hear that you are back on the Graves’ rollercoaster ride after so many years in remission.

Treatment choice is a very personal decision. There are posters here who have had RAI and are happy with that decision. There are also posters who have gone through a second or third round of Anti-Thyroid drugs and were able to get their GD *back* into remission.

As you know, with RAI, you will have to take replacement hormone for life. Docs tend to promote RAI as a "quick fix"…but some neglect to mention that it takes both time and trial-and-error before finding the "sweet spot" dosage that will keep them feeling good. Also, for patients with eye involvement, RAI may make the eye problems worse.

With Anti-Thyroid Drugs, the most serious concerns are liver and white blood cell complications. The complications *usually* occur within the first 90 days of starting the meds. Even though you’ve already been through at least one course of ATDs, this clock basically "resets" when we start over after having discontinued the meds for a while.

You are correct that PTU is generally not the "drug of choice", except for women who are in the initial months of a pregnancy. Although deaths and/or transplants due to liver damage are rare (I believe it’s an average of less than one a year for the 40 years or so that stats have been kept), they have occurred more frequently with PTU than Methimazole.

You can be checked for liver and WBC issues via regular blood tests, and stopping the meds usually provides relief from any complications. These side effects are *rare*, but it is still something that patients need to be aware of.

Best of luck!

[kmskelly]

#1018376

I’m back after 8 years in remission. I have a question for you warriors. What are your thoughts: Try the PTU route again or have RAI. (I have read some archives and the internet and see where PTU is not the drug of choice anymore but my PCP prescribed it and I am waiting to get in to see the endo.)

[snelsen]

#1064348

Hi, how are you doing? Have you had a chance to think about your options? The third option was lightly referred to in Kimberly’s post, but I wanted to tell you that there has been a lot of conversation lately from people who have chosen the surgical route, for their own sets of reasons. YOu might be interested in taking a look at their experiences. I also chose surgery, and have been extremely happy with my choice. For many years, I took no thyroid replacement at all, now I take a little bit of Synthroid. I was on PTU, but for a very short period of time, just long enough to get my levels down, and out of the extremely hyper state I was in, so I could have the surgery.
I think most people on this site, whether surgery, RAI, or anti thyroid drug, have been pretty content with what they chose. A big part of that is having an active role in what path you do choose.
Best wishes, how do you feel, are you getting more hyper?
Shirley

[cynthia]

#1064349

shirily am very interested in your post did you have a total throidectomy????? if so how is it possiable to not take a throid supplement???? I am newily operated on and had very bad reaction to starting synthroid see my post after surgery anyway am scared to start synthroid agin am waiting 1 week before starting (as per my endo) after reaction will see??? thanks for your next post with info ….by the way my endo told me that even if you have a total throidectomy some tissue remains secondardy to the parathroid glands presance surgeion must be creful to not damage these glands therefore can leave very small amout of tissue from throid???? hope you all are better can’t realize how horrid having graves is as a teenager so sorry for all the young people with it ugh!!!!!

[snelsen]

#1064350

Cynthia,
I think I had a sub-total thyroidectomy. I have written for the operative note, but have little chance of getting it after all these years. It was 50 years ago! If this is the case, I got along very nicely with the tiny bit of thyroid tissue that was left for many years. I was euthyroid (normal levels, felt normal in every way) for over thirty years. I did have thyroid labs every year or so.

When the labs said I was a little bit hypothyroid (and I was more tired than usual) I began Synthroid, and over the next decade, it was increased based on my labs. I always felt good. In the past year or so, I have worked with the endo to reduce synthroid doses, for the endo before this one, let me maintain 150mcg even though now the labs said I was hyPERthyroid, though I felt fine. Free t3 and free t 4 in normal range.

He wanted to have me have the amount of thyroid hormone that put me in the normal range, yet where I felt good. He wanted to decrease it because of the increased risk of osteoporosis and of atrial fibrillation. These are very small risk factors when you are in a hyPERthyroid state over time. Although I was in that state only by the labs, not how I felt. I agreed to reduce Synthroid because the cardiologist was concerned that my TSH was suppressed. As we reduced the Synthroid, I began to feel cold, sluggish and generally felt like crap, could not eat, had slow gastric emptying.
So, two months ago, we upped Synthroid to 100mcg from 75. I feel good now.

My situation is odd and unique, and there is no explanation for the prior endo keeping me with a suppressed TSH except that I felt fine. There is not much for you to learn from my situation ezcept for the fact that Graves’ is a wacky disease, and everyone is different.

Regarding you, I am very glad that you will probably follow with the cardiologist. It is important. I AM a cardiac patient, so I take some. For you, I think it is a good time to finish recovering from your very successful thyroidectomy, which you are doing magnificently.
BUT, I would not jump to the conclusion that taking the Synthroid "caused" your rapid heart rate and high BP. That is why when you can manage it financially, you definitely should go to the cardiologist for a cardiac work up. That is important.
It is POSSIBLE that you had some thyroid hormone racing around your body after your surgery that was already "made," and the addition of Synthroid a couple weeks after your surgery created too much thyroid hormone. There are not clear cookbook answers to all this. I suspect your endo stopped your Sythroid for this possibility. You were referred to the ER and cardiology because that is the only right think to do for a person with a pulse of 250. A pulse rate that fast that is not controlled, can be life threatening. That is why drugs are given to slow it down, and to manage the BP, if that is the problem.

These are just my thoughts, that you can read in any basic textbook. I can tell from you emails that you are MUCH LESS hyper, and much more grounded, than when you began to write a few weeks ago. YOu are making tons of progress.
I think you and I are probably older that most of the people who are writing, so there are always more possibilities to consider and rule in and rule out, simply because of our age. I am saying that because we are both Grandmas!
You are doing great, keep the record without worrying about it. I imagine your endo will want more labs in a few weeks, to see where you are. And he probably will want to hear from the cardiologist after you have some of your tests.
I have worn a HOlter moniter before. It’s easy and a bit cumbersome, and tells a story of what your heart is doing over a 24 hour period.

The reason I take cardiac meds is unrelated to anything related thyroid stuff. It is because I had a boatload of radiation and chemo for a couple of breast cancers, and there was some damage from one of both of them. I am doing just fine, though.
Shirley

[cynthia]

#1064351

thanks shirley will take your advice was a little upset yesterday when I checked about my bills from the hospital I didn
‘t know that the hospital can charge you outpt when you spend the night in the hospital for observaton this means a lots more charges I will be responciable for I called dr. admitting me and the hospital to see if I can get this changed but all who are ignorant like me ha ha need to have a heads up especially if on medicare charges can be a lot higher……and when you don’t get much income can be a abig challenge have a great day

[kmskelly]

#1064352

Shirley, I had read about partial thyroidectomies and asked the ENT that I was referred to (long story) about it. He told me that he does a total one and then puts the patient on Synthroid as needed. I was able to get a referral from him to an endo and go in 2 weeks. I am going to pursue it then. In the mean time I feel a little better – I forgot just how long it takes for the meds to start working. The beta-blocker has made a big difference but wears off before it is time to take another. Thanks for the info!

[Harpy]

#1064353

Kmskelly
Just curious about your history?
You say 8 years remission after PTU treatment.
How long were you on PTU?
Did you make any changes in lifestyle or diet?
Did you have regular thyroid check up’s, Hormones & Antibody testing?
Did you pick up Hyper symptoms early this time?
Can you identify a possible trigger this time around?
etc, etc,
PM me if want.
I’m looking at a variety of causal effects re GD, and using a variety of sources to try put together some info and get a better understanding of how GD treatment could be improved as I believe it is not given the due consideration it should be by the medical profession, when you consider how debilitating it is, not to mention other related thyroid conditions.

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