[Darcy43]

#1171730

Hi Alexis

I’m so sorry about your decision and it is a huge one. As all are encouraging, really think about your choices and options, arm yourself with truthful and helpful information like you are doing and surround yourself with positive support. I will keep you in my prayers. I hope the outcome is well for you. This disease is horrible, but you can live with it one day at a time.

[Kimberly]

#1171731

Hi Alexis – You have a lot of difficult questions that need answering — timing of surgery, use of beta blockers, and correct diagnosis. However, since we are all fellow patients here, and not doctors, we would really be doing you a disservice to even speculate on these issues. These are all questions that need to be addressed with a medical professional.

Sounds like your mom has been a FABULOUS resource in getting you connected with a surgeon! Could she possibly connect you with a physician who could help you work through some of these issues while your own doc is out?

Take care!

[adenure]

#1171732

Yes, Kimberly, I am grateful for my mom’s help. It’s exciting to know I have a surgery who will perform the surgery at the drop of a hat.

So, the good news (potential) is that I can get a scan and temporarily wean my baby for 7 days!!! The difference is in the radioactive isotope used for the scan. I called another facility to ask them what they use. The technician I talked with actually had the scan done while breastfeeding and said it is safe to resume within 5 days, but they tell everyone 7 days to be safe! The difference is I-123 is safe for nursing after while I-131 is not safe. She also said that I-123 isotope “bounces off” tissue where I-131 does cause tissue damage (even in a scan) because it gets into the tissue. She were surprised I-131 was used for scanning, but the other technician there told her it is used sometimes because it is cheaper.

So, where I am now is trying to get my doctor to write the referral and fax over an order plus my clinical records to the other center to have the scan done with the I-123. They said they could fit me in next week. I really hope my doctor will agree to refer me there. Then I can be 100% sure of my Graves diagnosis (or maybe postpartum- that would be wonderful). If I know with 100% certainty, I am way more comfortable going into surgery. So, I am hoping for the referral- we will see… thing is my doctor goes on his vacation after today, so I emailed and called leaving a message for him to please call me today and also emailing him the fax info. and everything for the scan. Here’s to hoping…
Alexis

[snelsen]

#1171733

Hi, I read about that also, but it was only three days with another referenced I ???
I’ll try to dig it up again and send it to you here. I am hopeful that you will be able to continue breast feeding. I GET it.
Shirley

[snelsen]

#1171734

Hello again, here is the reference. I hope this is it. Will check.
http://hps.org/publicinformation/ate/q4166.html

[snelsen]

#1171735

trying again.
http://thyroid.about.com/od/breastfeeding/f/thyroidscan.htm

[adenure]

#1171736

Thank you for the link! That sounds about right. The technician did say 5 days was fine, but they tell everyone 7 to be safe. I also could pump for the 3-4 days and then take my milk in to have it tested. I will probably do that anyway just to be confident. But, again, I’m still waiting to see if my doctor will refer me. I emailed him why breastfeeding is important to me bc of our family history of anaphylactic allergies and asthma. I’m hoping he’ll help me.

Alexis

[adenure]

#1171737

Next update…

Kaiser’s supervisor for the Nuclear dept. called me and said they could do the scan with I-123 and give me 1/2 the normal dose; so I’d get 100 millicures. I could wean for 5 days and then continue breastfeeding! Ya hoo! The head of the dept. isn’t there today, but he’ll be back Monday and the supervisor said he’d call me after he talks with him to get this through and to schedule. What a relief! He said to eat a low iodine diet for the scan as they usually ask people to do this for a week before the scan. I had only been told not to eat seafood for 2 weeks, so I’ve done that. But he said also to avoid salt, dairy, energy bars/ drinks with iodine in it (supplements/ vitamins) as well. I haven’t been doing that. But, I will from now on until the scan. I just don’t want to accidentally eat something with iodine and screw up the scan, but I’ll do the best I can I guess. Try to stick with fresh fruit veggies, grilled chicken and unsalted nuts? Any other suggestions. So, I’ll hear back Monday on when to come in for the scan, but my guess is it’ll be next Friday after my 7 days of low-no iodine. I will be pumping quite a bit until then as I have no milk stored up. My baby does like solids so far thankfully, so even if we have a rough 5 days with napping and bedtime, I know he will eat. Hopefully he’ll take the bottle as well. Grateful to be getting somewhere with all of this. Any info. regarding the scan and the diet beforehand and how that effects the scan results would be appreciated. I knew about the no seafood for 2 weeks and being off my medicine for a week, but I didn’t know about the salt, dairy or a week etc etc…

Alexis

[Kimberly]

#1171738

Hi Alexis – Glad to hear you are making some progress!

Here is some info from ThyCa on the low iodine diet. Not all docs require this for uptake scans, but my own doctor did. She believes it’s best to deprive the thyroid gland of iodine prior to the test in order to get a better measure of uptake within the 24-hour period. The low iodine diet is more commonly prescribed for thyroid cancer patients prior to treatment with RAI.

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyca.org/rai.htm#diet

Hope this helps!

[emmtee]

#1171739

Interesting info about I-123. I just checked my uptake and scan test results, and it turns out that that’s what they gave me (.2 mCi). I remember there wasn’t much of a wait to get my appointment (maybe a week or so?) and I wasn’t told to go on any special diet before hand. As it happens, though, I don’t like seafood and the salt in my cupboard isn’t iodized. (When I bought it, it was on sale and all the iodized packages were already sold, so I bought two of the non-iodized packages that were left on the shelf.)

[ncpatches]

#1171740

So glad you’re getting the scan and the good news! My Dr also told me low iodine, no seafood, no prepackaged stuff, no fast food, only natural things, fresh veggies and fruit, lean meats, etc. I laid off the dairy, almond milk for cereal. This was hard for me, milk keeps my nausea down, but had to deal with it for a week. Took a month for my appointment, will be great if you can get yours soon. Everything looks better for you!, Baby will be fine and you can go back to nursing soon, that’s a win/win in my book! Sending good vibes your way! HUGZ!

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