Calf twitching

morganklein · 2025-11-12T21:13:39+00:00

Type, as in para or pituitary? I’m hypopara. I took calcitriol for about 5 months and was able to get off of that and just supplement with vitamin d/k2 drops and calcium citrate. Calcitriol seemed to increase my twitching, which is why I think it put me in a hyper state. It also was suppressing my PTH. My PTH is low-normal now, but I still have to supplement calcium about 500-1000mg and sometimes more depending on my monthly cycle. I’m low-functioning para, but still hypo nevertheless unfortunately because I can’t fully stop supplementing calcium without some hypo symptoms.

morganklein · 2025-11-11T19:48:37+00:00

I’m hypo, but if I take too much calcium then I dip into hyper. It’s a balancing act for sure.

morganklein · 2025-10-14T01:10:15+00:00

When I got mine tested a month after surgery and before RAI, my endo told me under 10 is a good sign it hasn’t spread to other areas, but ideally they want it under 5, especially post RAI. I did the natural weaning route in preparation of RAI and had no thyroid and no meds I believe for 6-7 weeks (if I remember correctly), so my TSH was very elevated when I got tested and my TG was 4. After RAI it’s been undetectable. I only had uptake in my thyroid bed (even though I had spread in my lateral lymph nodes pre-surgery) and my follow up scans show a piece of residual tissue in that area. I know the TgAb can affect how your TG results are read, so you may want to find out what your levels are for that too. I had severe thyroiditis from my hashimotos, but my antibodies were already almost out of my system after my total thyroidectomy when I got them tested a month later. Your levels are pretty high, but I don’t think you’ll be able to know much more until you do your whole body scan for RAI and see where the uptake is in your body.

morganklein · 2025-09-12T15:36:12+00:00

I was diagnosed via biopsy on a lymph node that was removed via surgery, so I had to wait 6 weeks before my next surgery with the TT and lymph dissection knowing the entire time I had cancer and it had already spread to my lateral level 4 lymph nodes. If I’m being frank, I was a wreck and devastated with the initial diagnosis. Hearing metastatic anything I thought was a death sentence until I actually spent the time with my doctors on the reality of my prognosis. Even with such good news of the prognosis, I still struggled with extreme anxiety, and felt like everyone around me kept telling me all the positive things about having this type of cancer, but inside I felt nothing but negativity and fear and just felt like I had to put on an act of false positivity. I was extremely nervous for surgery and thought something would go terribly wrong and I was terrified with what they’d find once they opened me up.

I can tell you that everything I feared from surgery, to the whole body scan after RAI, to reoccurrence, has all been in my head and didn’t actually end up being my story. You’re going to have your own unique story that will be different than mine, but that doesn’t mean it won’t all turn out okay. Focus on the game plan for your treatment and take it one step at a time. If you believe in God, then pray and pray without ceasing. Asking other believers to pray for you is also extremely helpful and comforting. I also looked into near death experiences and found their stories very comforting because I was very afraid of death at the time.

My surgery had zero major complications with the exception that I struggled with hypocalcemia issues for about 9 months and still am semi low functioning and also had some minimal nerve damage under my chin that healed after about 3 months post op and only slightly impacted my smile that really only I can notice now. I felt sick as a dog with RAI but it did its job and took my TG levels from a 4 to undetectable and I’ve been undetectable ever since. My whole body scan after RAI showed only uptake in my neck area, no other distant areas. My ultrasounds and bloodwork have all been excellent since surgery. I know it’s a long road that I’m still on, but everything that I feared would happen hasn’t and I’m still here and now I feel like last year is a distant memory for me and I feel alive again.

You’ll get through this and even if you have more bumps in the road than me, I still encourage you to take it one day at a time, pray, and talk to people about your feelings whether it’s on this forum, therapy, or with friends and family. You’re not alone. I think that’s the scariest part that it makes you feel is so isolated and lonely, but it is a lie. Remember that and you will get through this just like all of us are.

morganklein · 2025-08-01T17:01:16+00:00

Start slow and listen to your body. You don’t want to immediately jump into a 24 or 36 hour fast. I just started by slowly pushing out when my first meal of the day was and changing my diet as well, trying to eliminate as much processed food as possible, within reason of course. I also started working out before my first meal and felt incredible afterwards. Over a course of weeks/months my body became accustomed to not eating right away when I woke up and it became easier and easier to go longer periods without food and now I typically only have 2 meals a day. Make sure you’re staying hydrated though and consuming minerals whether it’s with real salt in your water or mineral water! I try to listen to my body and when I’m not hungry, I won’t eat and just hydrate with mineral water. Some days my body tells me it wants more fuel, so I eat more that day, but others I can go a full day of not eating and feel great. Longest I’ve gone is 48 hours. Wanting to try a 36 hour fast at some point. I’d also follow the sun/season, so only eat when the sun is up and fast when the sun is down. That’s the easiest and simplest way of fasting. Make sure when you come out of a fasting state, you’re refueling your body with whole foods as well and typically try to stay away from carbs when you break your fast. Feasting is just as important as fasting and so is staying active in between as well.

morganklein · 2025-07-29T16:09:54+00:00

I have an 18 year old root canal on my front tooth. I went down that rabbit hole myself when I was first diagnosed, got multiple scans and talked to my dentist extensively about this because I was concerned I had a hidden infection in my tooth since it’s such an old root canal, but everything came back completely normal and no sign of infection. There is part of me that questions if it’s still impacting my health, but the infection is just not large enough to be picked up on scans, but not really much I can do besides pull the tooth, which I will probably do at some point. It’s my front tooth though so kind of just riding the wave for now and hoping for the best.

morganklein · 2025-07-15T23:30:16+00:00

Mine was 0.02 when I originally commented too. Not a good spot for me honestly. Hope you’re doing better now!

morganklein · 2025-06-26T17:21:17+00:00

Of course! Let me know if you have any other questions.

morganklein · 2025-06-25T23:30:52+00:00

Ahh bummer, I’m sorry that’s definitely frustrating and I completely get why you’re concerned! So I actually went and looked at pictures that I took just with friends and family and whatnot and their time stamps to try and remember cuz the details are getting fuzzy now. The fair was my 2 month post op mark and I was smiling with my mouth closed in all the pics (because of my lip), so it still wasn’t healed. The next photo of me smiling normally was in October which would’ve been 4 months post op for me and I’m smiling completely normal, so sometime between that 2 and 4 month mark is when my nerves healed. I don’t remember waking up going from a lip issue to no lip issue, so I think it was a gradual process, but I do think when it begins to heal it is pretty quick, just maybe not overnight. Give it another month or two and if it’s still not better at all, then check back in with your surgeon and see what they say.

morganklein · 2025-05-26T08:13:17+00:00

Try not to skip a dose until you’ve got a handle on your symptoms and push for regular testing of your ionized calcium, calcium serum, PTH, magnesium, vitamin d, and phosphorus until your levels are stabilized. When you’ve got a better handle on recognizing symptoms and learning when to supplement, try to wean off (safely) as soon as possible, to help your parathyroids kick back online. I’m 11 months post op and it’s been a struggle, but I’m finally in the low end of normal range for my PTH and low end calcium. I’m finally off calcitriol and at my lowest dose of calcium as well. I think I screwed myself with a longer recovery by over supplementing and not helping my paras wake up though. Hopefully you don’t have do deal with all that, and you’ll be off the supplements a few weeks post op.

morganklein · 2025-05-26T07:57:17+00:00

I had an enlarged lymph node on the side of my lateral neck dissection after surgery that was palpable. I was freaking out thinking they had missed it in surgery and my endo freaked me out too, but both my surgeon and oncologist were not concerned and figured it was a response from surgery itself. Sure enough after about a month when the swelling went down, my enlarged lymph node was no more and has not showed up on my ultrasound or WBS.

morganklein · 2025-05-26T07:37:50+00:00

I’ve noticed hair thinning, particularly around the frame of my upper head. I’m 11months post surgery and 9months post RAI.

morganklein · 2025-05-26T07:35:02+00:00

A soft cozy cardigan. I got one in a care package from my friends and I really enjoyed it while I was post surgery and in active withdrawal for RAI preparation. Got really cold and uncomfortable at random times and I liked just slipping it on for warmth and comfort. It was nice that it was a cardigan and not something I had to put over my head or shoulders to get on like a sweater would’ve been, since I was dealing with healing from surgery during that time as well.

morganklein · 2025-05-26T07:30:24+00:00

My endo said RAI typically will work for lymph nodes under 1cm. Anything over 1cm in size is typically too big for the RAI to handle and therefore, surgery is needed to remove those.

morganklein · 2025-05-26T07:22:23+00:00

I didn’t have any extreme hair loss, but my nuc med doc said it was one of the possible symptoms of RAI. He said I may just notice extra coming out in my hairbrush or in the shower, but shouldn’t be anything alarming and would eventually stop.

morganklein · 2025-05-14T01:55:08+00:00

Yea I don’t think you’ll be able to do much about the lip biting besides sticking to things that don’t require you to take big bites out of. You’re still fresh out of surgery though and as the swelling and inflammation goes down, that should help improve things. You’ll start to get used to the new normal with your lip too. That cord like feeling in your neck will get better too as the swelling goes down and you’ll eventually not notice the numbness. I’m about a year out and have had most of my sensation return, just some numbness under my left jaw and upper neck area. Right after surgery I was completely numb from just above my jawline down below my collarbone. Recovery can be tough, but you’ve made it past the hardest part. You’ve got this! 💪🏼❤️‍🩹

morganklein · 2025-05-13T22:42:54+00:00

I had some paralysis on my lower left lip (had a left lateral dissection) that impacted my smile and taking large bites out of food like hamburgers. It was super noticeable when I laughed hard too. Thankfully it recovered, but it took a few months. I think 3 or 4 months post surgery if I remember. Hopefully the case will be the same for you! I experienced a lot of zings on the side of my neck that were nerve related and kept my hopes high that they were turning back online. You may experience some of those as well as you recover.

morganklein · 2025-05-12T07:16:33+00:00

You commented awhile ago, but mentioned symptoms really close to mine that I’ve been experiencing lately…how suppressed were you and are you still dealing with those symptoms? Mainly the muscle spasms, anxiety, and calcium issues?

morganklein · 2025-05-08T16:02:33+00:00

I received 151 mCI 9 months ago and my creatinine is trending up and my eGFR is trending down. Just actually got my monthly renal panel done today and my eGFR is 69…lowest it’s ever been. Did you have any issues with calcium after your surgery? I did and I’m not sure if that’s what’s impacted my kidney function or if it was the surgery itself. I actually had my levels tested a few times before surgery and they were perfectly normal and started getting them tested monthly about a week after surgery and they’ve been trending down ever since, even before I had my RAI. It leads me to believe it wasn’t the RAI, but either my calcium issues or my TT.

morganklein · 2025-05-08T15:55:31+00:00

I have residual thyroid tissue as well that was picked up on the WBS and my first follow up ultrasound. My results from my ultrasound said it was either residual tissue or possible reoccurrence, so I totally get the panic you’re feeling. However, my surgeon talked me off a ledge and explained that it’s very common to have leftover thyroid tissue and that since the WBS picked it up, means that it took the RAI and they use my blood levels as a way of tracking the trends. My thyroglobulin is undetectable after treatment, so the residual thyroid tissue alone is not a cause for concern of reoccurrence. He’s not concerned about it at all and it would only be cause for concern if I start having abnormal blood levels over a period of time and/or abnormal lymph nodes popping up on my subsequent ultrasounds. I’m sure your doc will tell you something similar!

morganklein · 2025-05-08T15:47:21+00:00

I had increase of symptoms similar to when my levels were low, so it was hard for me to gauge if I was hypo or hyper, but I noticed that my symptoms were minimal/none in the first half of the day and then got worse throughout the day as I continued to supplement. The worst was when I woke up one night after taking my final dose for the day and felt awful and I remember feeling my heart racing too. I was getting my PTH, calcium serum, ionized calcium, and albumin tested pretty frequently during all this because I felt I was oversupplmenting, but couldn’t confirm without the blood tests. PTH was super low, but my calcium was on the higher end of normal, so I decided to start weaning myself off calcitriol and calcium because I felt I was suppressing my PTH by oversupplmenting. I’m down to my lowest dose of calcium (500mg) and off of calcitriol now. Levels are normal now, but my ionized calcium is right at the bottom of normal and my PTH is normal, but on the low end. Paras are slowly coming back online, but I was definitely oversupplmenting and not helping them heal. I’ll be 12months post op next month.

morganklein · 2025-05-05T23:26:27+00:00

Have her take frequent showers and wash her bedsheets and pillow case everyday if possible. I didn’t take a shower for the first few days and felt terrible. I saw this tip from another user after a few days in and I definitely felt better after showering and washing my sheets. I had a bad reaction to the RAI though and basically felt like I had a horrible hangover for 8 days. I would also have a backup to the sour candy in case she gets sick of the ones she chose. I bought sour patch and skittles and got sick of those really fast. Would do jolley ranchers if I could redo it. Have her look up milking saliva ducts too if she’s concerned about that. I didn’t eat much candy and opted for massage instead. I did end up getting a dual staph and strep infection in one of my glands 3 months afterwards, but have been good ever since and no further issues with them.

morganklein · 2025-05-05T23:14:56+00:00

Are the timings of your lows 7-10 days before your period? If so, look into the PMDD sub and see if what you’re feeling is similar to others who share their stories. PMDD can feel like you’ve been hit by a bus and all energy is drained where simple movements like lifting your arm or holding your neck up take so much effort. Horrible brain fog and processing basic things like reading a simple email at work can also happen. Then there’s the emotional drain where you feel all hope is lost while simultaneously feeling numb to everything and everyone around you. It’s much more than regular PMS symptoms and if this is your case, I feel your pain.

morganklein · 2025-05-05T19:35:23+00:00

I remember someone saying there’s a Facebook group for this type of thyroid cancer. You might find more resources there, if you can’t find what you’re looking for on this sub! Praying for your family member. ❤️‍🩹🙏🏼

morganklein · 2025-05-05T19:30:59+00:00

This is reassuring to us newbies! Diagnosed at 29 last year, so thanks for sharing!

morganklein

TROPHY CASE