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in reply to: Well, here goes! #1173529
Bloodwork from day 23:
tsh .01 L (345-4.5mU/L)
FT4 4.6 H (.8-107ng/dL)
FT3 12.2 H (2.0-4.8pg/mL)
Higher then they were the morning of the RAI, but I feel better overall.
The only other thing remarkable on the blood panels I had done was my WBC is low, glucose was slightly high, sodium was high. I should drink more water.
Today (day 24) I feel great. Down 19 pounds in 24 days! My clothes fit again! Hooray!
I am having occasional moments of intense heat on my shoulders and sweating. Annoying but not even close to what it was 2 weeks ago. Whenever I eat I seem to get hot a few minutes afterward. Even if it’s raw kale and carrots. Weird.
I am back to myself mentally. The flare up in hot flashes gave me some initial anxiety but this is the die back happening. I should be thrilled! This means the RAI is working. I feel like I have become a completely different person in the span of 3 weeks. It’s not just the weight loss, there is a clarity that I haven’t felt in years. A year ago I felt like I wouldn’t live to see the next. Now, I feel like I can do anything.
My endo was right, I am getting my life back in the first 30 days. This hasn’t been easy but I have no regrets.
in reply to: Well, here goes! #1173527Day 20. I feel fantastic!
Sorry I haven’t updated sooner, it is a busy time of year for me.
The relentless anxiety I had….gone. The hot flashes, palpitations…..gone. I am still not very hungry.
I have not lost any more weight but I feel good maintaining my 17 lb loss for right now. I know my levels are dropping and the eventual weight gain going hypo will bring doesn’t scare me anymore. It will be temporary.
Today I received a bill from the administering hospital for $1600. This bill is itemized for the iodine itself. The $1200 I paid before the treatment did not include the iodine apparently. So my actual cost is now closer to $3100 for RAI, including the uptake before treatment.
Needless to say I called the hospital and “thanked” them for waiting 3 weeks to tell me there were additional charges. They said they didn’t include the iodine cost because they did not know the amount needed at that point. Funny, I knew how much was ordered before they were even called.
Long story short after a full morning of phone tag, the hospital admissions dept admitted fault and I am currently negotiating a pay off amount in lieu of litigation. They said they will use it as a teaching tool for that department. I certainly hope so. I know I learned a lesson.
I have to love the health care system here. Nobody has your back. Even if you have insurance, do your research and ask a million questions, especially “does this cost include medication?”.
I haven’t had insurance in so many years, I thought I was good at covering all bases. Today I learned I forgot a big expensive question.
in reply to: Well, here goes! #1173523Day 13. I feel good.
Aside from some lingering bloodwork anxiety I feel really good. I have been assured I do not have leukemia and that the elevated lymphocytes are due to the thyroid gland destruction. It is only temporary, but makes me very nervous.
I can tell my levels are starting to drop. My stomach growled today….for the first time in 2 weeks! I was told 2 weeks was the average thyroid dump time so right on schedule. After being so amped I feel “tired” but I am actually normal again instead of super speedy. It takes some getting used to.
The hot flashes are a once a day if at all. At this point I would say they are probably psychosomatic.
I feel warm but not hot. I actually felt cold this morning! It was brief but exciting. When I was in ATD induced hypo, I was cold all the time. I will take hypo over hyper any day!
Grace I am glad to hear you are doing well! Any therapy that works is worth following. When I said mismanaged, my Gma’s seeds were left in too long, and then they lost one (it migrated) inside her. It was finally removed but the bone marrow damage was already done.
I hope Sarah is doing well in her new larger retail space. Someday I will get up there to shop in person.
Day 13, no regrets, feeling NORMAL.
in reply to: Well, here goes! #1173521Day 11, down 15lbs and counting.
Last night was nothing but sweating and tachycardia. I got 4 hours of sleep. My neck is sore again. I suspect this is another hormone dump induced stretch of anxiety. I am still jumpy but running cooler now.
Has anyone had a cbc run a week afer RAI?
I did. The results had some disturbing numbers.Low RDW
Low Segmented Neutrophils
High LymphocytesMy endo is out of the office until Tuesday. I called the nuclear dept. at the hospital that gave me the RAI, they advised I wait until Tuesday.
From what I have researched, these are temporary but it sure threw me for a loop. The radioactive seeds used to treat my grandmother’s GD were mismanaged and they gave her the leukemia that eventually killed her, hence my RAI fear.
I feel good just nervous. I still stand by my decision.
in reply to: RAI – my journey #1174284Hi Amy!
Congratulations on taking a step toward getting your life back!
It sounds like you are pretty well prepared for what lies ahead. It may be scary at times but you will get through it. Everyone on this board is here for you.
The first few days may catch you off guard, but it gets so much better. Today is my day 9 and I feel 100%.
Please keep us posted.
in reply to: Well, here goes! #1173520Day 8.
Still kicking myself for not doing this sooner.
I am 98% back to myself. I get 1 or 2 hot flashes a day, but thats it. The headaches and eye pain have subsided.
I am now down 12 pounds since taking the RAI.
My endo’s assistant called this morning to check on me. She said not to waste my money on bloodwork this week and wait and get it done next week. Apparently my levels could be changing daily at this point so getting it checked is worthless.
I am still curious, but I will wait until next week and save myself $100.
Thanks for following my journey! I will update this thread if/when something significant happens. Right now it is back to business as usual.
in reply to: Well, here goes! #1173518Day 6!
Today was a mixed bag. It started with eye pain and anxiety. By noon I was 100% normal. Now it is a lingering heat on my shoulders and ears….but that’s it!
I feel good! The best I have felt in over a week.
Wednesday is day 8. I am going to the local cash lab to get my levels checked. I am just curious. My endo said 8 weeks. I have gone every 4 weeks so far this year for a free t3, free t4 and tsh. My reasoning has been that if I feel my hormones shift, waiting 2 months to get in to find out whats happening is foolish. With the monthly levels I have been able to chart the bell curve of my tsh & t3/t4 levels. It’s a smile and a grimace on paper.
Thank you everyone for your encouragement and support. This forum greeted me with open arms and a wealth of information. Without everyone here and their collective experience, I would not have been able to come to terms with the RAI, but also the demons of Grave’s.
My Grandmother had Grave’s and was treated with radioactive seeds in the 80’s . I was a kid then and remember seeing her suffer with the effects. This experience made the thought of RAI so scary I put it off for 6 years. It was recommended to me the day I was diagnosed in the ER. I laughed and swore it would never happen.
Today I am 6 days in and kicking myself for not doing it 6 years ago. The statistics that told me I am safe meant nothing. Coming to grips with the disease, reading the experiences of everyone before me…..that is where the fear ended.
Would I prefer not ingesting radioactive iodine? Of course! Who would willingly want to? But I have Grave’s and it is destroying my body and mind. I see RAI as an empowerment against Grave’s. I have made my stand. Grave’s has fought back these last few days, and it gave a good fight.
Pretty sure I won.
in reply to: Well, here goes! #1173512Day 5.
I have to be honest, today was horrible. Something has changed hormone wise. I am no longer having severe hot flashes!
Instead today has been nothing but headaches, physical tremor, tinnitus, and a boat load of anxiety. I feel like I did 6 years ago untreated. Pulse is fast but not over 100. I feel like I want to crawl out of my skin.
Uncomfortable but not worried. Irritated for sure.
I cannot wait to see what tomorrow brings! Hopefully it will b something completely different.
in reply to: Well, here goes! #1173510Glad to see you back Shirley!
in reply to: Well, here goes! #1173508Day 4. I am still running hot. Exhausted after a full night of sleep.
Today I feel like I have been punched in the throat. A tshirt collar is too much pressure on my neck right now.
Down 9 lbs since Tuesday. I am enjoying it while it lasts.
The discomfort is tolerable, but I am ready for the sweating to stop.
in reply to: Terrible anxiety and very depressed #1174069Hi Lilly!
I am sorry to hear you are having bouts of “Grave’s Crazies”. I had a terrible time with anxiety and depression.
What helped me most was realizing it was the hormone doing it and consciously not giving in to the emotions.
I meditate for an hour a day now. Occasionally I need a valium on bad days, but centering my thoughts every day and deep breathing has helped more than the pills.
There are many guided meditations available iTunes and many are also available for free on youTube. Meditation Oasis has dozens of podcast meditations available free on their site. (I use their app) I would encourage anyone to try meditation to control the anxiety.
I hope you find relief soon.
in reply to: Well, here goes! #1173504I felt so good yesterday I decided to do some yard work. Big mistake. Completely over did it. By 2 pm I was showered (again) and decided to take a nap. 12 hours later I woke up. Lol!
My sister took the car pool this morning as a favor. I am still sweating so much and feeling so warm I would have frozen everyone in the car out with the a/c blasting.
Today my goal is to do absolutely nothing. I feel good but running very hot.
I am FaceTiming my neice and nephews today. Like a genius their mom told them I was sick and wouldn’t be coming over for a month. This upset my neice greatly. I will be free in time for her 5th birthday party and plan on surprising her. Normally the kids hang off of me like monkeys. I was told to wait a month before they can safely do it again. I miss the little monsters already.
So far so good. Some hormone dump discomfort, some side effects from all the sugar free candy too. (Read the bag! Lol! ) Still confident I made the right decision.
in reply to: Well, here goes! #1173503I was just emailed the bloodwork results from the morning of the RAI. I stopped by the cash lab on the way to the hospital to get some levels before swallowing the pill.
TSH .01
Free T4 3.9
Free T3 10.1I guess this explains why I am sweating. LOL!
in reply to: Well, here goes! #1173500Good Morning!
I finally got some sleep and aside from the hot flashes and sweating I feel normal. The hot flashes have gotten less severe, but are still frequent and annoying.
Still no appetite. Still drinking every hour. Snacking on handfuls of goji berries and blueberries but no real hunger. I am down 3 pounds since Monday so I won’t complain yet.
Losing the 40 lbs I gained this year is still a priority. It didn’t make me jolly.
Strange dreams last night. Why would a T-rex be on my street?
I feel optimistic today. The first time in a week there’s some peace mentally. I love it!
Gloving up to go feed the fish. I cant wait to feel the sun. Today I can say I am happy I did the RAI. There is a long road ahead but I consider myself over the hump now. Something clicked, I feel good. Warm, but good.
in reply to: UPPER EYELID SURGERY TODAY #1174183Good luck Shirley! I hope you find some relief and comfort! You are in my thoughts.
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