[adenure]

#1059061

Hello all,

Okay, I’m back in limbo once again and really, truly don’t know what to do at this point. If you’ve seen my posts, I got my scan done yesterday. After the 4 hour uptake, my percentage was 19%. Normal range is 4-18%. Today, after the 24 hours, my percentage was 34% (normal is up to 30-32%). Yesterday, the nuke dr. was 100% sure I have Graves. Today, another nuke dr. looked at my scan and seemed to think it was Graves, but wasn’t 100% based on my percentages. I’ve been off methimazole 2 weeks, and he wasn’t sure if it was the medicine still in me or if this scan is accurate. I thought being off the meds. 1 week yielded an accurate scan?

So, I go to the surgeon who basically seemed to be saying to me that least invasive is the best option (RAI), but that he can and would do the surgery within a month if my endo’s got me prepped with beta blockers and however they needed to prep me. Since I’m breastfeeding (and even if I weaned right now), the nuke folks won’t give me RAI for at least 3 months once I’m dried up and even then, they would do a scan of my breasts after giving me some I-123 to see if my breast tissue is taking up the radioactive iodine before treating me. So, I wouldn’t be able to be treated via RAI for at least 4 months (probably more). The surgeon said I could take beta blockers until I could do the RAI. Well, I tell you, i don’t like that idea.

So, back to the surgery idea… the surgeon is a specialist in thyroid cancer and does thyroidectomies all the time, so he is experienced. He did say most Graves patients do not elect surgery and he went over the risks with me about thyroid storm and all that. I do realize those potential risks, but I am still leaning towards surgery.

So, I called my endo’s office (my endo is on vacation) to ask for instructions to prep for surgery. The head of endocrinology and another endo. looked at my case and scan and wouldn’t give me prep instructions! They ordered another round of labs (TSH, free T4, T3, TSI) bc they’re not convinced it’s Graves because of the “patchiness” of the scan, the percentages, and the timing of onset with my baby.

I am sooooooooooooo frustrated right now. I want to do the surgery before I go to hyper, but they don’t want me to rush into surgery (understandable), but what if I miss my window. I can’t go back on the ATD’s bc of the liver problems I had with it and RAI is in the far, distant future if I had to do that. So, any words of wisdom? I’m just not sure what to make of any of this.

Alexis

[snelsen]

#1171877

My first thought is that the nuclear med docs are better at reading the scan than the endocrinologists. But really, I have no idea.
I realize that your%’s are slightly above the ranges, not wildly above.
This is really tough. I can say that I had what was called then,
“post partum thyrotoicosis, and also Graves’ disease.
Knowing how I felt, there is no way that I would have toughed it out to see if it were thyroiditis, but again, I don’t know anything about the science. The explanation I received was that the incidence of Graves’ increased a little bit in women after pregnancy, but that did really change the treatment. They did not consider thyroiditis.
And, as I said in another post, I elected to have surgery asap, and I did continue to nurse.
Gosh, this is a really conundrum for you. I am so sorry.
I am not sure what the TSH, T3, T4 and TSI would show, for it is my understanding that they are equally elevated with both conditions. but tyou can ask the doc that question.
Well, you have one more business day, so I would hope you get your lab results today. When will your own endo be back?
I see your dilemma, for without ATD’s you are in for a hyper ride of unknown length, and that is definitely and absolutely not a good idea for your own health.
I guess, based on that, plus you are without a med to prevent you from being hyper, I see why you think surgery is the right thing for you in every respect, including breast feeding, plus your health. Basically, if you waited and waited, it is a decision to be hyperthyroid for an unknown length of time, and taking a gamble that has pretty large implications.
Do write soon
Shirley

[adenure]

#1171878

Thanks Shirley

My endo is out of the office, but the other doctor agreed to order weekly blood tests to monitor my TSH until the surgery scheduled for June 12th. If my TSH stays normal, then the idea is that it could be post partum (it is normal now- although it has slipped since being off methimazole for the last 2 weeks). If it continues to go down towards hyper, then they’re more inclined to believe it’s Graves. If TSH continues to go down, then I will do the surgery on the 12th and hope that I am not too far out of range at that point and will hope for a safe surgery. I know everyone would like for me to wait and see for a few months, but I don’t know if that is a gamble I’m willing to place bets on. For me, it’ll come down to the weekly tests and the trend that I see; I’ll have to go off of that I guess.

On another note… if I do need the surgery, I started looking into the replacement hormone options. Do you know much about Nature Throid? (dessecated thyroid- or something like that?). There seem to be a lot of positive reviews on it. Thanks again for all your support!

Alexis- the conundrum case (I’m interested in hearing my endo’s thoughts on the scan and everything else when he gets back from his vacation!)

[Bobbi]

#1171879

Shirley, from what I’ve read, post-partum periods are one of the major risk times for developing Graves. And that post-partum thyroiditis often is a precursor to a full-fledged Graves developing.

Alexis: It is very difficult to know what to do, when you get different medical personnel telling you different opinions. So, I am giving you hugs, and hoping that whatever course you select, it turns out to be the right one for your health.

[snelsen]

#1171880

Thank you, Bobbi. I just read one article that clearly states there is no consensus on much of anything with post partum thyroid disease.
Alexis, I am enclosing it for you, but it is also 10 years old.
It does not really help you with your dilemma. After reading it, I think I understood that ATD’s are not used (not that you are a candidate for them)
for thyroiditis, only beta blockers.
I can see why there is confusion and indecision from the docs.
Gosh.
Shirley
http://jcem.endojournals.org/content/87/9/4042.full

[Author]

Posts