u/boozled714

Total removal 2/11/26 positive multiple nodes with papillary carcinoma follicular and classical types. 42F.

I honestly wish someone had a brochure with all the possible side effects and complications after surgery, sure we hear about all the *normal* ones. Admittedly, I've had a tough time getting my Levo dose correct and it's only been a few months, but it was initially too high right after surgery and I had crazy heart palpitations (175). They lowered it to 125 and the heart palpitations stopped, but turns out that's actually way too low a dose. My most recent bloodwork (last week) was bonkers. I finally got into my Endo on Tuesday and she increased my dose to 150 and added 15 of T3. Tuesday night, before taking the new dose, my hands and eyelids started feeling uncomfortable I brushed it off as just exhausted. I took the new dose yesterday morning and by lunch my hands, feet, and eyelids were all swollen and uncomfortable.

Now look, I have allergies to everything I was pretty sure it was an unrelated allergic reaction or a reaction to one of the inactive ingredients. I messaged my thyroid "care team" wondering if I was having an allergic reaction. Their PA said: "If you are not experiencing other symptoms of allergic reaction it's most likely a common complication with low thyroid numbers and called myxedema and caused by mucin buildup in your tissues, it should clear up when your hormones stabilize. No additional treatment needed at this time besides the change in meds from Tuesday's visit. If additional symptoms such as low heart rate (below 55) or low body temperature (below 96) occur please contact the clinic at ***-***-****. If additional allergic reaction symptoms occur, please follow up with your provider at NW Allergy Clinic. Complete your blood work around May 21st to check thyroid numbers."

I'm sorry common? I did so much research prior to my surgery, after my surgery and not once did I see the word myxedema or mucin!?!?! Mucin build up?!?!?! I have had exceptionally stiff knees the last few weeks and sore wrists but I also have EDS and I'm in the throws of perimenopause so this isn't uncommon, so I didn't clock it as a thyroid symptom, but apparently that's also related (Dr. Google). Apparently it can progress and become dangerous but my increase in meds hopefully will keep that from happening. The Endo office probably gave the low heart rate/temp warning as a way of telling me to keep an eye out without scaring me (I can be a bit anxious I'm sure they have me flagged 😂🤣).

I'm really just here to post about myxedema and mucin build up so someone else can search this sub and find info 😉

This is like perimenopause and uncovering new not commonly mentioned symptoms at every turn!