[adenure]

in reply to: May be a strange question #1171805

So the nuclear medicine supervisor called. The physicist crunched the numbers and said 5 days weaning. That’s not too bad. I’m getting a hospital grade pump delivered today, so I’m hoping this will all work out well. I’m getting a lower dose of the I-123 too. Hoping for a good news.

Alexis

[adenure]

in reply to: May be a strange question #1171803

Yes, I just found out today- my scan is Wednesday. I take the pills in the AM and then get the scan in the afternoon. Thursday I go in to get my thyroid “measured” (?) and then have the consultation and find out about the scan… Here’s to hoping for post partum thyroiditis instead of Graves. But, either way, I will do my best to stay strong and positive. Pray for me and especially my baby who will have to go on a bottle (temporarily- a week I think); he’s never had anything but breastmilk straight from the tap Hee hee! I hope he’ll be alright with it. I’m nervous, but hopeful.

Alexis

[adenure]

in reply to: May be a strange question #1171798

I hope you get some pain relief soon! You are going through the wringer right now, but you are a strong woman! Is your surgery still on Friday?

Alexis

[adenure]

in reply to: Sent home from work… #1171794

I’m sorry! I’d be really 😡 about the run around! Geez! I hope you get some answers, peace, and healing soon. Aren’t you on 40 mg. of methimazole? Maybe that’s what wreaking havoc on your stomach? I know why you have to have that high dose to prepare for your surgery. But, maybe that’s it? I don’t know. It’s pretty powerful stuff. Good luck & stay strong- you already are a very strong person!!!
Alexis

[adenure]

in reply to: In need of support #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

[adenure]

in reply to: Confused, Frustrated and Scared #1171787

I don’t have too much to suggest that Shirley hasn’t mentioned. A complete physical and labs sounds like a good idea. I know the frustration of being told you just have an anxiety issue. The first doctor I saw about all of this sent me home with a paper bag to breathe into and told me I probably have an anxiety/ panic disorder Turns out I do have hyperthyroidism (based on bloodwork)- now we’re trying to figure out between Graves & post partum thyroiditis (I am fortunate to have a great endo)… my labs show antibodies, but I’m awaiting a scan referral… anyway… it is a long process, and I hear you on the distressing symptoms- it IS scary, and no it’s not in our heads!!! Stay strong and positive and maybe start from square 1 with a complete physical and labs. Keep us posted.

Alexis

[adenure]

in reply to: 38 and pregnant one year after RAI #1171782

Congratulations!!! I hope everything works out for you and your baby. It looks like everything is going well and you have a great medical team on your side. Let us know how things are going. Have a happy, healthy & enjoyable pregnancy. I have 4 boys, but we probably won’t have anymore. But who’s to say I guess. That’s the fun thing about life- you just never know what kind of amazing miracles are around the corner.

Alexis

[adenure]

in reply to: In need of support #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]

in reply to: In need of support #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

[adenure]

in reply to: In need of support #1171728

Thanks, all. Rachael, my endo. told me I couldn’t nurse at all following the scan; I’d have to wean completely. The nuclear dept. said the same.

Kimberly,

Yes, this is a toughie! My endo. is going to be out of the office until the end of the month starting Friday. I need to talk with him though as I’ve had a very big blessing if I decide to go the surgery route. My mom has been a surgical technologist for 25 years and knows all the surgeons very well where she lives. She’s also very good at her job and is often requested by them. She told me she wasn’t comfortable with me doing surgery with just anyone. So, she went and saw one of the surgeons she used to work with (before she retired) and explained everything to him and showed him my lab work since all this began. With the numbers the way they are, he’s pretty sure it’s Graves. The amazing this is he said that if I come out there, he would do my surgery the next day or day after- whatever I wanted! Wow. He said I could ask my doctor to prepare me now and he could do it at the end of the month once he’s back from his vacation (he too will be out for a few weeks). I’m really thrilled to have the opportunity to have a surgeon who my mom has worked with, trusts, and knows so well. He was rated among the top 10% of surgeons in the country for 2011.

Now comes the question… what to do? I left a message for him to ask if it’s okay to wait some or should I do this right away? Is there still hope that it could be postpartum thyroiditis? Although, neither my endo or the surgeon seem to think that is the case, but there is that nagging 10% chance… I don’t even think I could get a scan within a few weeks or month through Kaiser. With my doctor being out of the office for 2 weeks starting tomorrow, I want to talk with him about it and talk with the surgeon too and figure out what to do. What if I do wait and start to go hyper again, surgery will be riskier obviously. Do I need to go on the betablockers right now even though my heartrate is fine and I don’t feel too badly? A little “internal” shakiness, but the tremors are fairly minute. I’ve been off the methimazole about 6 days now. I feel the difference, but I’m not really hyper like I was before.

What should I do? Problem with waiting is I can’t go back on an ATD to get normal again due to my liver issue. Should I aim for the end of May, beginning of June? I’m happy, worried, and unsure.

Alexis

[adenure]

in reply to: In need of support #1171725

The next step in the saga here…

My endo. is encouraging me to do the uptake scan, and I hear what he’s saying. Basically, what if I’m part of the 10% who have high antibodies but has thyroiditis and not Graves? Well, I guess that is a possibility. He told me after the initial bloodwork that he was 95% sure I have Graves due to the high antibodies, but that due to the timing of the onset (after having my baby), it’s not a slam dunk. What to do, what to do? I could do the scan (I’d have to wean Zack) and find out what is probably already true and proceed with hopefully surgery. Or, I do the scan and I’m the 10% with antibodies who doesn’t have Graves- I can’t nurse- but I don’t need treatment. I don’t know. Usually thyroiditis clears up by now (within 3-6 months & Zack will be 6 mo. on the 21st). But, my endo. said it can last for a year as well.

I really don’t want the scan; I want to breastfeed what will probably be my last baby. My oldest didn’t nurse and has a terrible time with asthma, wheezing, and a severe anaphylactic allergy to peanuts. My other 2 children don’t have any of those problems & they were breastfed for 2 & 3 years. I want to give that to my baby.

I’ve been referred to the surgeon who is out of the office until Monday. The receptionist printed out my referral and put it in his office she said.

So, how likely is it I have thyroiditis? 95% chance of Graves… ugh, I don’t know what to think anymore.

Alexis

[adenure]

in reply to: Just Diagnose with Graves, having a hard time. #1171756

Hi!

A big hug to you. Graves is a tough monster. I’ve been on quite the roller coaster myself for the last 2 months (when I was diagnosed) and before when the symptoms were pretty bad. I was on methimazole for 7 weeks- 5 mg. daily- but I, unfortunately, had liver issues due to the medicine and had to stop treatment last Friday. It did make my thyroid normal though. So, if you can stay healthy liver-wise, hopefully it will work for you. On a positive note, my liver enzymes are returning to normal off of the medicine. So, I am trying to pursue surgery as doing RAI would require me to wean my baby (I’m okay with that), but then dry up (take a few months for me) and then wait an extra 6 weeks before treatment- such a long wait- I don’t want to do that. So, I’m hopeful that even though I’m off the meds., the surgeon will see my case as a possibility.

As far as having a baby, I do have a friend who has dealt with Graves for 10 years on PTU and methimazole (switching back and forth)- she has had 4 healthy children and breastfed them all with no problems. So, it is possible to have a family and be managing Graves via medication. Although I was part of the small percentage who had a liver issue, please do insist that your doctor not just check your thyroid levels, but also run a liver function test as well when you go in every 6 weeks or so.

Try to stay positive; it is very hard and very discouraging, but there are some wonderful people here who will support you on your journey.

Alexis

[adenure]

in reply to: Graves and pre-op – what a mess! #1171742

I am sorry you’re dealing with all of this. Doesn’t it suck?!:mad: I just called my endo., to try and ask for an urgent referral to the surgeon. I don’t want to wait a long time to treat my Graves, and you know with my nursing- even weaning today- will take months then the 6 weeks that I’m supposed to wait once I’m dry, I just don’t feel like I can do that. But, who’s to say that the surgeon will be on board to operating on someone who could be hyper? I don’t know. Here I have 3 options, yet all 3 have an issue. Sorry, I don’t mean to hijack your thread, and our situations are different, but I hear you on the tears, stress, and feeling hopeless at times and dealing with people who don’t seem to get the whole picture. My endo. didn’t mention anything about the nursing issue- something I stumbled on myself looking through medical journals– my head aches from all of this- time to just wait for the doctor’s call. Well, let’s try to stay hopeful and positive.

Alexis

[adenure]

in reply to: In need of support #1171722

Thank you all so much; yes, I am beyond overwhelmed. I read various sources (nuclear medical journals, doctors) that I should be dried up for 6 weeks before getting any radioactive iodine- whether a scan or treatment. From what I understand, they don’t give the dry up shots anymore bc of risk of stroke. My mom had the shot when she had me, but I know it isn’t offered anymore; maybe in my circumstance it would be? Not sure. Believe me, it does take me months and months to dry up. This is my 4th baby, and my body will produce milk for months after weaning. I have a big supply!

I am going to talk with the surgeon. My husband really wants me to as well, he’s not convinced on the RAI. So, I guess that yes, I do need to talk with the surgeon and see what he thinks and go from there. I’m not on the betablockers right now as my symptoms aren’t that bad. Friday I was in normal range thyroid wise, I feel as if I’ve probably slipped some, but then again that could just be my stress and sleep deprivation right now. I don’t know- I asked my endo. for a surgeon referral today, so we’ll see what happens next. I’ll start the betablockers if needed, and if surgery just doesn’t look good- I’ll wean my baby and just go for the RAI. I just don’t want to wait a really long time to do either treatment.

Alexis

[adenure]

in reply to: In need of support #1171717

Now I just realized that I’d have to postpone RAI because of my breastfeeding! Even if I wean my baby, it takes me months to dry up- the lactation/ breastmilk (because it’s a bodily fluid) will take the iodine into it. There was a story of a lady who did her full body scan after and they couldn’t see her lungs because her breasts were full of iodine!!!!!!!! (from the milk). I can’t take the medicine to stay normal and how can I do surgery if I’m not in normal range? WHAT AM I
GOING TO DO???! I emailed my doctor tonight- he didn’t even mention anything about it- they don’t know much about the nursing component. The Journal for Nuclear Medicine Technology is the one that said nursing women should be “dried up” before getting treatment. Honestly. I understand why now that I think about it. But, if Methimazole is off limits and surgery is off limits, RAI is now off limits too?! God, I need help, wisdom, guidance, and a miracle. I’m so worried now- I don’t know what to do.
Alexis

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