[KimberlyOnline Facilitator September 10, 2012 at 10:50 am Post count: 4294]

#1173514

Yes, hang in there! Hope that you are feeling some relief today, but if not, I would suggest calling the doc’s office to see if they can give you some further direction. Take care!

[Carito71 September 10, 2012 at 1:35 pm Post count: 333]

#1173515

Great post. I’m so glad you have had your treatment and even though you are not all well yet, I’m glad you are on the road to getting better.

Hope you feel better soon.
Caro

[AmyG September 10, 2012 at 2:59 pm Post count: 16]

#1173516

AzGravesGuy – I’ve been following your story mainly because I’m having RAI on Thursday 9/13 and wanted first second-hand experience and because your no BS approach and positivity are refreshing!

I’m 30 yrs old but feel like my body is at least that of a 50 year old with Graves (no offense to the older posters, I just picked an age). I was allergic to the 2 medications out there so RAI is my last stop to HopeVille.

Keep on posting! If I’m not feeling too out of sorts, I’ll start my own thread so others can get as many perspectives of what to expect as possible.

[spenanelson September 10, 2012 at 4:00 pm Post count: 33]

#1173517

Wishing you the best of luck with your journey! We have all been there and are here for you now.

Take care and keep posting.

[AzGravesGuy September 10, 2012 at 4:34 pm Post count: 160]

#1173518

Day 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.

[KimberlyOnline Facilitator September 11, 2012 at 9:26 am Post count: 4294]

#1173519

Thanks for the update! Absolutely agree that you shouldn’t wait two months for labs if you are feeling hypO symptoms coming on, but this close to the procedure, it’s probably way too soon to see progress. In fact, because the thyroid gland actually pours out stored hormone while the destructive process is taking place, you might actually see levels that are a little more hyper than you were before the procedure.

Take care!

[AzGravesGuy September 12, 2012 at 10:32 am Post count: 160]

#1173520

Day 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.

[AzGravesGuy September 15, 2012 at 10:57 am Post count: 160]

#1173521

Day 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 Lymphocytes

My 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.

[VanIsleGal September 15, 2012 at 12:59 pm Post count: 66]

#1173522

I am so sorry to read this, your post was delivered to my email. I read that the antibodies increase after RAI, which probably causes the increase in TED. I had a problem with the idea of being alone, to protect others from radiation exposure, and having a possible life threatening case of thyroid storm. I also had a problem with increasing my cancer risk.

I thought this was interesting: http://www.cbc.ca/news/health/story/2012/09/07/breast-cancer-brca-radiation.html

Women at a hereditary risk of cancer should try to avoid chest, breast x-rays. This can be detected with genetic testing. One chest x-ray is .005 to .020 of absorbed radiation. A typical higher dose RAI is 10 000 rad (absorbed radiation). (I didn’t keep this reference as I had no plans of posting on this forum again). The good news is miraculously most people don’t get cancer from RAI!

What do you mean mismanaged radiation for your grandma? I don’t know what the CBC results mean. Have you looked them up? Interesting the numbers are off? An organ essential for life is being destroyed though. I hope you feel well again soon!

I am managing the disease with heart rate readings, blood tests, seeing the endocrinologist, low iodine diet, and Kundalini yoga and chanting. I am taking 20mg Tapazole as a maintenance dose right now, down from 40mg.

I wonder how long that thyroid dump can last? I thought it would be over by now? So if you talk to the endocrinologist on call you pay for this? I would talk to the on call endocrinologist at the hospital if I was in your situation.

I hope this is your last bad day! Keep us posted & good luck! PS. I talked with Sarah Kramer the other day!

[AzGravesGuy September 17, 2012 at 2:37 pm Post count: 160]

#1173523

Day 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.

[KimberlyOnline Facilitator September 18, 2012 at 3:01 pm Post count: 4294]

#1173524

AZGravesGuy – Thanks for the updates…this thread will be a great resource for future patients!

Ah, “normal” — what a great word! Wonderful news!

[VanIsleGal September 20, 2012 at 2:55 pm Post count: 66]

#1173525

How are you doing now? Hope you are good!

I wonder if they still use these seeds that can migrate? That is very scary. Do you know if they still use these seeds?

I hope your new journey into hypo world will be smooth sailing! xoxo

[KimberlyOnline Facilitator September 21, 2012 at 10:09 am Post count: 4294]

#1173526

@VanIsleGal – The therapy that you are talking about is used for specific types of cancer (prostate, breast, lung, etc.) and is different from the RAI treatment administered for Graves’, in which the dose is consumed in liquid or capsule form.

[AzGravesGuy September 24, 2012 at 12:58 pm Post count: 160]

#1173527

Day 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.

[KimberlyOnline Facilitator September 24, 2012 at 3:39 pm Post count: 4294]

#1173528

AZGravesGuy – Glad to hear you are feeling well, but sorry to hear about the billing frustrations! That’s good news, though, that the facility is willing to work with you.

A few years ago, my doctor ordered an endoscopy for me and we never discussed the expense. After it was over, I discovered the total cost was around $4,000 — and that was with the insurance discount! Our health care system is unfortunately “buyer beware”…

Take care!

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