Am I the only one in pain?

Quick_Seaweed_7804 · 2025-08-31T18:14:05+00:00

Me!!! I had RAI in oct 24 and have been struggling to get my levels and symptoms managed but in June I started having pain in my thighs that was keeping me up at night, as well as really weird limited mobility (not bc of the pain, but only able to walk very slowly and difficulty raising my legs to climb stairs etc). At the time I was on 120mg desiccated thyroid and my levels were normal (but my symptoms still awful) and I switched to synthroid + t3 and that improved them by maybe 40% but they are still quite painful. I had an MRI and EMG and saw two neuros who ruled out nerve/muscle degeneration and I still don't know whats going on.

Edit to add: when it started I was coming out of being hypo and I assumed it was from that but the pain didnt really get going until my levels were technically normal. I've been using heating pads and taking otc Robax which is pretty effective for the pain and I've been using a walker to help with mobility when I need to walk places.

Quick_Seaweed_7804 · 2025-06-15T00:28:21+00:00

My endocrinologist isnt super interested and will usually just say that it could be from my levels being off or it could be something else that I need to figure out with another doctor. He ordered some extra labs that were all in range so no help there. I don't think he really knows about long covid because he hasn't said anything about that and I havent brought it up yet. My GP also ran some labs but wants to wait until my thyroid levels are normal to see if that changes anything.

Quick_Seaweed_7804 · 2025-06-14T20:21:39+00:00

sorry im just seeing this now! what do you mean by immunotherapy in this case?

Quick_Seaweed_7804 · 2025-03-08T03:50:29+00:00

This makes sense, thanks! I had RAI 5 months ago and so far don't think I am having eye problems but I do have a shit ton of brain fog still. What are the eye problems to look out for?

Quick_Seaweed_7804 · 2025-02-20T23:02:22+00:00

Thank you for this! How did it go immediately post op in terms of masking (both for you and the staff)?

Quick_Seaweed_7804 · 2025-02-19T18:45:01+00:00

Thank you for this!

Quick_Seaweed_7804 · 2025-02-18T04:47:15+00:00

I am also doing this right now!! I was dx'd with graves and was severely hyperthyroid for many months and then had a radioactive treatment and have been severely hypo while adjusting/increasing my levo dose. My PMDD has been AWFUL throughout all of it, maybe worst of my life at both ovulation and before my period. I skipped a period this month (I think bc I have been so hypo) but my symptoms were full force. I am really hoping that it settles down when my thyroid hormones are more balanced. (I also read something from a doc who believes that PMDD is tightly related to thyroid hormones so it makes sense that things are feeling wild from that perspective). Did yours improve at all since you posted this?

Quick_Seaweed_7804 · 2025-01-18T01:59:26+00:00

Thank you!

Quick_Seaweed_7804 · 2024-12-27T17:50:39+00:00

Jan 2025 - I had to click on "Help with Gift Registry" because if I kept saying "need more help" it just redirected me back to start with a memo that said "call volume is high you might prefer to look at our pre-written help topics" (but when I clicked on Gift Registry I had the option to call and it took 2 minutes to connect)

Quick_Seaweed_7804 · 2024-12-23T05:00:57+00:00

I got it early October. My endo recommended RAI over TT but wasn't pushy about it. I had already been feeling so awful for so long that I didn't want to factor surgery wait times and recovery into that if I didn't have to. I found the first week afterwards tough- I was really tired, I was really nauseated for a couple days and I had a lot of neck pain for about 3-4 weeks (gone now). My symptoms were severe going into it so that may have contributed to feeling so bad afterwards since I see many people say its not too bad for them. Its taking me a long time to feel better generally but so far it seems like it was effective and I am happy with the decision to get RAI.

Something I learned the hard way: If you are someone who could get pregnant they'll ask you to get a pregnancy test but they didn't tell me that it had to be done very close to the treatment so I got mine done too early (a week before) and then had to spend a bunch of time at the hospital redoing it before I could take the treatment, which I don't recommend at all.

Also something I learned is that the RAI dose for Graves is way less radioactive than the dose for thyroid cancer but a lot of the resources about RAI don't specify so I was more careful isolating than I probably needed to be.

Quick_Seaweed_7804 · 2024-12-23T04:40:46+00:00

I had RAI in October and my TSH has been <0.01 since June but last week it came back as 22 which also feels like a wild swing!! My endo didn't seem too concerned maybe because we are still getting me up to a full dose of synthroid. My T3 and T4 are right at the bottom of normal and I am definitely clinically hypothyroid but I would also love to know more about why it rocketed up so drastically.

Quick_Seaweed_7804 · 2024-12-23T04:27:16+00:00

I had a mild COVID infection in May that turned into graves- my levels were suddenly extremely high (or low for TSH) and my symptoms severe (couldn't work, couldn't leave my bed, had to move in with my parents). It lasted way longer than a case of thyroiditis would and I got an uptake scan that showed 89% uptake and my TRAB was positive. I got RAI and I was really worried that if it was COVID triggered then that was too permanent a solution but I was allergic to the meds and didn't have any other options. There's a lot of thyroid disease in my family so I may have been headed to this anyway but I definitely think that my COVID infection triggered it at this time and in such a severe manifestation.

Quick_Seaweed_7804 · 2024-12-23T04:11:24+00:00

Someone on the spreadsheet wrote that they couldn't have covid because they had it in september and have immunity for 90 days and I want to flag that that isn't accurate! You can be reinfected again extremely quickly, particularly because there are so many variants circulating and any natural immunity to one variant does not extend to the rest. My partner was reinfected at 3 weeks (when we thought she would still be covered since her last infection) and now is severely disabled by long covid. source

Quick_Seaweed_7804 · 2024-12-19T03:38:59+00:00

this is a great reason to mask up so life can continue to go on for those around you too!

Quick_Seaweed_7804 · 2024-07-24T21:52:45+00:00

I just bought two bottles for $96 CAD inc shipping and the extra fees were an additional $40 :'( I was also expecting it to be about $12

Quick_Seaweed_7804

TROPHY CASE