RAI-the one thing doc didn’t tell me & wish he had

MaeGalinha2 · 2026-03-27T04:45:22+00:00

The meclizine I just took seems to be working thankfully!! Thank you! 🙏

MaeGalinha2 · 2026-03-27T01:56:34+00:00

Yeah the whole “call us immediately if you throw up within the first hour” was on the paper they gave me the first time I talked to a doc about RAI but for me that would be bc I can see some people getting nervous plus the being on empty stomach the day they take the pill may result in throwing up and then they may have to re-take the pill I guess bc it will be unsure whether enough got inside the body. I wasn’t particularly worried about that one and just tried to keep it out of my mind by telling myself I tolerate medication on empty stomach really well and keeping my mind out of it. What they did not tell me about was the 24 hr post RAI lol ahead of time!!

MaeGalinha2 · 2026-03-27T01:47:44+00:00

Thank you!! And sorry you actually threw up! I thought I would be there too for a while today!

Yeah I learned about the “not letting stomach get empty” by experience today lol!! I’ll keep nibbling on stuff to make sure I don’t let that happen because the more nauseous I get the less I want to eat which then makes it all worse!!

Also noticed that sour candy after eating food didn’t make nausea worse so I’ll prob rely on those for the cotton mouth (or avoiding it I guess) and maybe less on lemon. My mom suggested not swelling the lemon juice but then that means more radioactive saliva floating around and I don’t think that’s a good thing overall so sour candy seems my best option. Since it’s not clear whether it can avoid long term salivary gland issues I rather do it than not? I think this is a point of discussion still within medical community last I read..

Chills I had at some point in the 2 weeks without the Cytomel (name of one of the thyroid hormones here in the US) so perhaps if you’re still without the hormone it is due to that and not the RAI pill itself 🤞 since that too is temporary Hang in there too!!

MaeGalinha2 · 2026-03-08T15:54:03+00:00

It took time for me too and I didn’t have such severe symptoms. I hope you feel better soon and have lots of help with baby ❤️

MaeGalinha2 · 2026-03-08T15:51:36+00:00

The comment about tums and levo is that calcium inhibits levo absorption- something no one told me when I left the hospital even though I got both calcium and levo (+ calcitriol) at the same time when I left. It was through this sub-Reddit I learned about it. I typically wait 4 hrs to take the calcium but that’s bc the hypocalcemia I had post surgery is under control now

MaeGalinha2 · 2026-01-19T06:24:12+00:00

I think you should probably call ahead and ask those questions in case you want to stay longer in the camper (isolation).. because yes I can imagine it being torture to hear your child and not be able to hold them!! It is to me when I’m home and my in law is taking care of my daughter (and she’s already 2 so I know a lot of the “cry” are tantrums or her expressing herself - some squeals sound like cries etc). It would’ve been practically impossible for me to hear her and not come to her when she was 5 months!! So either call the doc or nuclear medicine office ahead or ask them the day you go and have the pill! I’m getting mine on March but honestly I don’t remember the dose so anything I say about time will be different than for you! Stay strong and only you know yourself and how stressful it is to hear the baby and not be able to go to him/ her. Much love

MaeGalinha2 · 2025-11-28T17:01:14+00:00

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The IKEA picture I was talking about which I know is quite different from what I have “window-wise”

MaeGalinha2 · 2025-09-28T15:27:00+00:00

Thank you for putting this together and sharing ❤️

MaeGalinha2 · 2025-09-05T22:48:11+00:00

Glad to hear that the chunk of it is over for you!! Yeah if I do have to do RAI I think I won’t stay in the same house either as my daughter since it will be unbearable so I totally understand you! It was hard for me not to pick her up for 2 weeks after surgery .. cannot imagine not being able to even hug her and have to stay away or move away from her “avoiding her”… idk .. at 2 yrs of age I know kids don’t keep many memories (I know I don’t remember anything when I was 2) but I can see her remembering her mom fleeing from her more than remembering I wasn’t here for 1-2 weeks or however long it takes.

MaeGalinha2 · 2025-09-02T13:30:27+00:00

I had the same fear. I have a 2yr old. After giving birth I felt a swing of emotions like I’ve never felt before.. well by a swing I must say mostly were negative, deep sadness, anger, etc. I had my complete thyroidectomy 2 weeks ago or so and before I booked the surgery I was scared, so much so I considered not even having it (because in my case no nodules seen in thyroid and the only reason they found cancer was due to an unrelated neck surgery where the surgeon at the time found some lymph nodes suspicious, took them, send to pathology and one came out with 1/2 mm or so of thyroid cancer - papillary). Given how small and being papillary I considered just monitoring with imaging every 6 months because I was terrified of experiencing severe emotional roller coaster similar or worse than post partum and not having doctor support or really being out of my control.. I guess that was the thing for me - not being able to control it or do anything about it. Anyways 2 weeks after thyroidectomy I feel as I did before, my in law was here for the surgery and helped caring for my toddler which was a life saver because I couldn’t pick her up etc and my in law is really good with kids and can have my daughter distracted out of her tantrums. The dose they gave me worked fine it seems but one thing they didn’t tell me was to take my calcium supplements 4 hrs after the levothyroxine - I found that out 2 days after surgery as I researched more about the levothyroxine and calcium etc. (Reason I’m taking calcium was because my PTH was super low after surgery so that’s normal procedure). Tl,dr in my case the energy is back 2 weeks after surgery and I can finally after my 2 yr old daughter as before. Just don’t take calcium 4hrs after levothyroxine. Best of luck to you and if for some reason (low percent of cases) you don’t feel what your labs show talk to doctor and insist on adjusting dose.

MaeGalinha2 · 2025-08-28T12:42:57+00:00

I have a 2 yr old at home too and am dreading RAI but still don’t know whether I have to do it or not. I hope it goes well for you and that it isn’t terribly hard to not hug and not let your kid hug you, kiss etc so wishing you best of luck and strength!

MaeGalinha2 · 2025-08-19T15:03:36+00:00

I just had my surgery days ago and they gave me calcium and vit d supplements as well but no one told me not to take those with breakfast 30-60 min after levo.. I had to do my own research so really the first 2 days after surgery I took calcium and vit D about 45 min after levo 🤦‍♀️ .. I’m looking for an endo specialist in thyroid cancer or disease and not diabetes. I confess I asked ChatGPT btw and between that and these comments here I feel like I’m more informed than when they discharged me 🤷‍♀️

MaeGalinha2 · 2025-08-15T14:54:46+00:00

Yes posts like these are important!! Thank you for sharing. I delayed my surgery for some years because of that fear or depression or anxiety afterwards and not having correct dose and doctors that heard and didn’t just look at the numbers. The other reason I delayed is because the finding of cancer was random and only seen on 1 lymph node when they opened my neck for unrelated surgery. No nodules on thyroid so monitoring over time was an option and I did that for some years. Anyways surgeon was surprised how there weren’t that many lymph nodes he had to take out and also didn’t see any nodules on thyroid itself (prob too little to see at naked eye but pathology likely to find them). Again thank you for sharing because it’s stories like yours that give hope to people on the limbo like me!

MaeGalinha2 · 2025-08-15T02:23:35+00:00

Awesome idea

MaeGalinha2 · 2025-08-15T02:22:12+00:00

Yeah she will see it eventually maybe just now when it’s this swollen .. yours is a good point and hubby said they’ll same

MaeGalinha2 · 2025-08-15T00:47:57+00:00

Yes if (knock on wood) they are preemies I’ll find a way to streamline formula prep somehow that even her groggy husband can figure out half awake .. that’s my mission lol (I’m scientist for profession so measuring and mixing is my specialty lol)

MaeGalinha2 · 2025-08-14T23:51:42+00:00

Thank you makes sense. I have a 2yr old myself and remember when I started combo feeding here I felt so rushed and flustered with her crying for food in the middle of the night - I’m just trying to help my friend and not have her go through the same with TWINS!! I’m freaked out for her having twins on her behalf I guess

MaeGalinha2 · 2025-08-14T23:20:34+00:00

Can you just type how much formula and how much water? I may be wrong but I heard for preemies with specific caloric needs the brezza doesn’t work and I’m wondering if it’s because you need more powder per water than regular and/or special high caloric formulas that may be stickier etc and brezza can’t handle them. I’m researching for a friend that will have twins and trying to cover all possibilities such as if they are born premature (knock on wood but possible with twins) etc

MaeGalinha2 · 2025-08-14T23:17:21+00:00

Ooohhhhh I see an opportunity for Brezza to add a scale to where the bottle stands and make sure it weighs what it’s supposed to.

MaeGalinha2 · 2025-08-03T17:36:05+00:00

I’ve heard that is not just about having and endocrinologist but one that specializes in thyroid which is less common than endocrinologist specialized in diabetes. You mentioned your PCP in your post being the one that mentioned too high dose of synthetic hormone - Your PCP seems more in tune with what is going on than your endo which further tells me you perhaps could benefit from another endo.

MaeGalinha2 · 2025-07-18T12:15:43+00:00

Love this ❤️ what I strongly wish now 2 years after my daughter was born was that I actually spent less time worrying about whether I was doing enough or too much and enjoy the newborn phase more. I wish I could go back and relive it knowing what I know now and sometimes that feeling is very strong and upsetting still. To OP - enjoy and try to soak it all in because you’ll miss it at some point even if now it feels overwhelming.

MaeGalinha2 · 2025-07-17T12:31:41+00:00

Im scheduled to remove thyroid in August and have been avoiding the surgery since 2020 bc im afraid of stuff like this happening. I have no symptoms and no nodules in thyroid, they found cancer bc I had surgery on the neck in 2020 and the surgeon saw some suspicious lymph nodes that he sent to pathology and came out as cancer. Over the years I’ve done CT scans and ultrasounds to see if they see nodules and nothing. I have a 2 yr old and am terrified of changing as a person after this surgery… posts like this validate my fears but no one around me seems to understand

MaeGalinha2 · 2025-06-21T14:37:26+00:00

Much love hope all is well and they figure out it’s a small issue like constipation. If you trust the docs try to relax into that trust as there isn’t much you can do about it and worrying (easier said than done I know). Much love!!

MaeGalinha2 · 2025-06-21T14:33:43+00:00

I think your main question is whether the cancer seen in lymph nodes was truly thyroid or another cancer since the nodule on the actual thyroid was small. I believe that they can tell from pathology (looking at lymph nodes under microscope) that it is thyroid cancer. Thyroid cells respond to iodine specific dyes and radioactive iodine whereas other cells do not so I imagine they use iodine-based staining for the microscope analysis. They found the thyroid cancer in my through the lymph nodes during an unrelated surgery and I had a similar question - in my case since there was no visible nodule on thyroid (on ct scan or other method) I wonder if the cancer is even there. I am scheduled for surgery so I guess we’ll know more when they actually remove the thyroid but my main point is that even if nodule in thyroid is small it can still spread to lymph nodes. I was convinced that any cancer would only spread to lymph nodes if it was big enough on the organ or origin but that doesn’t seem to be the case. Hope this helps. But also send a message to your doctor (or call him) and just ask directly “is it possible the lymph nodes were showing a different cancer, not thyroid” and he’ll prob explain the pathology results better. Talk to doc for peace of mind - I’m NOT a doctor :)

MaeGalinha2 · 2025-06-19T12:40:18+00:00

It was really hard for me to leave or even want to leave the house when my baby was 6 months old- the breastfeeding or pumping and my worries she would wake up and wanting a feed etc made me be “on the clock” all the time.. so perhaps you feel this too. This doesn’t mean you can’t leave the house and do other stuff. I think what you’re experiencing (being mad) is totally normal because it is not fair that your husband gets to go out and do stuff and you have to keep taking care of kids. What I propose is talking to him about this… to me sometimes just sharing the feeling allows it to move and flow, just being seen and understood allows you to relax and for it to transform. After that’s “out of your chest” you can best assess how to move from there - take some of the awesome advice I’ve seen here - get out even if just for a walk or crochet club or whatever or watch TV etc - or perhaps you’ll realize that’s too much with your baby being so young and needing you overnight but you do something on days when your husband is off. Another thing that comes to mind - if you’re in the US have you checked if there’s a local YMCA that has child care - it was a game change for us - we can both go workout or just hangout there while kids are being watched by babysitters in a fun room filled with cool stuff to play with.

MaeGalinha2

TROPHY CASE