[DHood]

in reply to: 38 and pregnant one year after RAI #1171781

My endo already started that testing at 12 weeks. I should get the results tomorrow. He said if the levels were high he wanted to let the perinatologist know immediately so that they could be aware of additional monitoring. If for some reason the levels are high, he said at that point they would want to monitor the baby’s heartbeat and that the perinatologist would probably be doing more frequent testing to assure the baby wasn’t receiving the anti-bodies. He also plans to continue testing that level every four weeks along with my thyroid level tests. They’re also going to continually monitor my Vitamin D levels since those seem to tank anytime I stop taking a Vitamin D supplement (I have no idea if this is Graves related or not but it didn’t start until I was diagnosed). So my OB is going to run the labs each and every time I go see her and my endo was contacting my perinatologist office with the results so I could discuss with her at my normal appointment tomorrow. I’m not sure if most hospital networks handle things so smoothly/thoroughly or not but I am incredibly grateful that I seem to have a great team working together for me

So for anyone reading this thread that is wondering about neonatal graves – this is what my endo told me (in kindergarten terms which I need . The anti-body molecules are ‘really big’…much bigger then what can normally pass through to the placenta…so the possibility of them being able to pass through to the placenta is very difficult and hence why it’s rare, although not impossible. If a baby is born with neonatal graves they will have a pediatric endo specialist immediately assigned to the baby who will most likely put them on beta-blockers and within a couple of weeks the anti-bodies usually work their way out of the baby’s systems and all is fine I’m incredibly lucky also that I will give birth at a hospital where there is also a children’s hospital as well so I have access to some of the most wonderful pediatric specialists available anywhere near me .

[DHood]

in reply to: RAI dosage #1062889

So sorry – I should have included a little more about that 80 days. I didn’t want you to be alarmed (as I was) when they hand you a piece of paper with a date months out on it. So…the half-life of this is 8 days meaning…8 days after your procedure the radiation exposure will be HALF and every 8 days thereafter..the same thing. Sorry about not including that in my previous post!!

[DHood]

in reply to: RAI dosage #1062885

I had RAI done a week ago and I also had 20 millicures and my uptake was 82 percent…so I guess I absorbed right around 16 millicuries into my thyroid from my understanding. I’ve consulted others who have recently had the same procedure and that dosage didn’t seem alarming to me.

As for instructions afterwards…they seem to vary quite a bit from doctor to doctor and hospital to hospital. I’ve been doing a lot of research and I’ve asked a lot of questions. The Nuclear Medicine Department at my hospital explained there was contamination and then exposure. Contamination was from the first few days when you’re flushing out the ‘extra’ that wasn’t absorbed into your thyroid. They told me that is the biggest thing they want you to avoid exposing people to (bodily fluids such as urine, etc.). They said that could take anywhere from 24 to 72 hours to flush out.

After that it was exposure and that is the radiation your thyroid is actually giving off. I was told it takes 80 days (10 half lives) for them to consider you rid of the entire radiation exposure from the RAI which is why I got a piece of paper stating I had this treatment with a date 80 days away. That way if you travel and happen to set off a radiation detector in an airport you have proof that explains why.

I still have conflicted feelings over some of the advice I’ve been giving about the exposure side of things so I’m still doing research and getting more answers; however, I have a baby to think about so I am definitely being more cautious then I would be if I didn’t.

[DHood]

in reply to: If you had RAI #1062900

I just had my RAI one week ago. My uptake was 82 percent and they gave me 20 millicuries. What they told me (hopefully I don’t goof this) is that since my uptake was 82 percent my thyroid would absorb that much of the dose and then expel the rest…so apparently mine took in right around 16 millicuries. Since I was on the beta-blockers for such a short time before the RAI, I don’t know if my symptoms feel better because of that or if they’re actually improving, but I have noticed a difference in my muscle soreness. Before when I got up after sitting for any length of time I could barely move…now I’m beginning to feel 37 again instead of 80.

I haven’t had a huge amount of trouble sleeping like others, but I was up often to use the bathroom….last night was the first night I hadn’t gotten up to use the bathroom since…well a REALLY long time. Overall though, I can only imagine that it will take time for all of this to work. I’m just trying to be patient. I’m with you though, we want to try ASAP to get pregnant and are going to wait six months (although my endo told me it’s really three). What I’ve heard most about is just getting those T3 and T4 levels straightened out so you can get pregnant and sustain the pregnancy.

GOOD LUCK…Hopefully we’ll both have morning sickness before the year’s out!! ” title=”Very Happy” />

[DHood]

in reply to: Not understanding some symptoms #1062908

Well…it’s my pinky and ring finger on both hands. It’s odd because it happened on both hands the same night but my left hand is much worse. Basically, when I wake up in the middle of the night, or in the morning, the knuckles seem to be popping. If I just keep my fingers straight and move them up and down (like just doing a a finger wave) they just pop along on those two knuckles instead of moving smoothly. Once I massage them a little and move them around a bit they seem to loosen up and move a little bit more smoothly. It just seemed odd to me that it started right after starting the beta-blockers.

[DHood]

in reply to: Not understanding some symptoms #1062904

Hey Shirley,

Thanks for the reply. I’m not on any anti-thyroid medication. Just beta-blockers and anit-anxiety pills. My had my first endo send my OB (who was the one who told me to get to an endo in the first place) send her all of my labs. When she saw the numbers/diagnosis from my uptake and scan she intervened and got me into the top endo in the area. When I visited him, he confirmed the diagnosis, answered all my questions, and gave me two options…RAI or ATDs. Since we want to have another baby soon (I have an eight month old son) and the ATDs were a 50/50 chance and I may have ended up at RAI anyway…we went straight for the RAI.

I will call my endo and ask about some more questions about this. He said the poor circulation in my legs could possibly be the result of my heart working so hard but wasn’t so sure about the finger joints. He changed me from Atenenol (sp?) then because I told him I was having horrible nightmares and he said that could happen with that drug and put me me on propenenol (something along those lines anyway).

Thanks for the suggestion!
Denise

[DHood]

in reply to: After RAI when am I safe to be around my baby? #1062932

Thank you so much for your post! I really like the ‘never look back’ idea. I’m going to have to steal that.

I know I’m being overly cautious (yes, this is bordering on OCD here ” title=”Very Happy” /> )…but since my neighbor has access to the geiger counter and is a math whiz…I let him take the measurements this morning in my home and create the nice little spreadsheet. It’s really nice to see EXACTLY how many millirems I’ll be exposing him to depending on how far I am away from him for how long and then being able to relate that to a plane ride, day in the sun, etc.

My DH says I’m overreacting, but for me, I needed to see those numbers and know what I was exposing him to. And I honestly think my neighbor may have been doing a little of that for himself too considering I hang out with his wife and three kids whenever we can get a play date set up. It may have been a bit over the top, but it’s giving me peace of mind. I also think that I’ve come to the conclusion that the Nuclear Medicine Department (at least at my hospital) is not cautious enough. I didn’t get a one hour warning on week two like you did. I got a, resume your normal life with him after one week.

Besides my obsession over this…I really can’t wait to see how much better I’m going to feel. I’m sure it won’t be sudden, but incremental..and that’s okay. Any improvements will be a blessing.

[DHood]

in reply to: After RAI when am I safe to be around my baby? #1062929

Thanks for the quick reply. I’ve looked at lots of other forums but this was the first I saw that seemed to fit me so I’m excited to be here.

For anyone else with info, I received 20 mCis for my dosage…my uptake (or was it my scan) came back at 82 percent so the Nuclear Medicine Department told me that probably 16 mCis were absorbed into my thyroid. I think my frustration with the Nuclear Medicine Department is pure and simple – different people have different answers…and answers seem to be based on exposure to adults and not kids. I get that there just aren’t definites…the supervisor was honest enough to tell me that. My plan is to stay at a distance for 10 days…my mom is here to help out until then. My wonderful neighbor has a geigor counter available to him and he said he’ll check my levels whenever I’d like for peace of mind. I honestly just don’t want to have to wait 80 days to snuggle with my little guy but I will if that’s best.

Other than that, I can’t wait for this RAI to take effect so I can take those first steps to feeling normal again. I was chalking everything up to ‘it takes a year to get back to normal after having a baby’. And I really want to get off these beta-blockers…I know I have to have them but my joints in my hands have been catching ever since I started them…and I type.. A LOT…for my job. Who knows if it’s even related but seems odd that started two days after beginning to take them.

Anyone else with info or an opinion – I’d love to hear it!

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