[Boomer]

#1179167

Howdy all!

I thought I should update this thread as some things have happened.

Three days ago, on Monday, I went in to the hospital and did my RAI uptake test. Altough my numbers weren’t expected to be low enough until August it seems that the high-dose MMI did the trick and finally calmed my angry thyroid a bit. A week ago last Sunday I was ordered off the MMI and scheduled for the uptake test and RAI treatment.

The uptake test was fast and simple: Had a short discussion with the tech to explain how things worked, the tech opened up a cool 20lb lead bottle, and handed me one capsule of low-dose RAI from within. I took it on an empty stomach (no food for two hours before and after) and was on my way home in five minutes.

Tuesday was the actual uptake test. I was first sat in front of a gamma imaging device and two pictures were taken – one close and one about 10 inches away. I was then injected in a vein with a radioactive contrast dye and was sent to wait for 15 minutes as it circulated through my system. After 15 minutes I was led to what looked like an x-ray room, laid down on the table, and four pictures were taken. One close, one far, one left, and one right. Nothing to it.

15 minutes later my uptake was calculated to be 66%. Apparantly very high as the normal range was explained to be between 3-30%. ( I could very well have botched the numbers/facts here- forgive me if I have) The good part of having a high rate of uptake is that a lower dose of RAI will be used.

Yesterday, day three, was another quick visit. I sat with the tech as we went over the safety precautions, possible side-effects, etc. Another cool 20lb lead bottle (no bigger than a can of soda. Lead is heavy!) was retrieved, and again one little capsule was removed. My dose of RAI was 32 mCi (millicuries. I *think* I got the suffix correct). I swallowed the capsule and went home.

I felt fine all day yesterday but last evening, out of the blue and with no nausea whatsoever, I threw up a couple times. It was odd in that I did not feel bad beforehand. It just hit me and I had to vomit NOW. After only a few minutes I was fine and eating a bowl of ice cream (as my throat was a ittle sore and I needed an excuse).

I’m feeling fine today. Slight tenderness of my thyroid but that’s nothing new. I’m glad to have taken this next step and am very much looking forward to the day when this lousy thing in my neck slows down and I can get my body back in balance. All in all the RAI treatment was painless, easy, and not as bad as I thought it might be. In four weeks I have to have bloodwork again to check my numbers and (hopefully) will by them be ready to start on Synthroid. It might, however, take longer until I’m ready. I’ll cross that bridge when I get there.

~~~~~~~~~~~~~~~~~~~

I mentioned elsewhere that I was prety happy with my Endo and I still am. His office gals, though, are a different story. He and I will be having a talk as his office is the most unprofessional error-filled mess I’ve ever seen! I don’t know if he is oblivious to the shenanigans or maybe he doesn’t care. As meticuloous and well-wpoken as he is I will be shocked if he doesn’t care.

What is so bad about his office gals? I’ll tell you and let you decide for yourself:

The wrong prescription was called in. I specified the exact script including dosage and quantity but when I picked it up it was wrong. Wrong med altogether. I had forgotten my phone that day so I drove to his office where I found the office manager. I informed her of the error and she dropped an F-Bomb under her breath as she turned away. I called her out on it right then and there but she didn’t seem to apologetic. Absolutely unprofessional. I’m not easily offended but who wants to hear that kind of talk from a so-called professional?

My order for bloodwork was NOT at the lab as promised. I’d asked for a copy but was assured that the order would be there. It wasn’t. Since the office was closed I had to leave and come back the next day. A 40 mile round trip each time. Not cool.

The order for my uptake test had my last name horribly mis-spelled. So mispelled that I almost had to reschedule the test. The tech had called the endo’s office all afternoon the day prior but never got a call-back in spite of leaving numerous messages. He finally got through two hours after my sheduled time on the day of the test. I was surprised that he said “Wow- there are some real winners in that office” so apparently I’m not alone in my (very) bad impression of them.

I WILL be bringing these issues up with the doctor on my next visit. His reponse will determine whether he gets fired and I go endo shopping or not. I’ll keep ya’ll posted. I’ve been nothing but happy with the doctor himself but I’m seeing a trend with his staff that shakes my confiidence. It will be interesting to how things play out if nothing else.

~~~~~~~~~~~~~~

Well that was one loooooong post. I’ll update as things progress over the next few weeks. Until then ya’ll stay positive and keep looking forward and I will too!

Love to all,

Boomer

[snelsen]

#1179168

Hi Boomer! From a TT’er, to an RAI’er, welcome to the next phase of Graves’ fun. It was so thorough of your doc to remind you not to breastfeed! I like your endo, too, because you like him. I am sure he looks forward to your visits!!!

Glad you are progressing post RAI. I suggest if you really begin to feel “wonky” between now and when you have your labs, do call, report it, and try to get through the delightful cadre’ of employees, to get your report to the endo!

i’m thinking the endo would really LIKE to know what is going on in his office.
Especially from you, for you now have a relationship with him, and I think he would respect what you told him. If this were in a hospital, an “incident report” or similar phrase, would be submitted to risk management, and the employee would be counseled and warned, or possibly terminated, depending on the rest of her/his work record. The attitude and F bomb are really unacceptable. there are plenty of people looking for work who would not have this behavior, and represent this nice endo the way he would like his office (and him) to be represented. Relationships matter, so I know your Boomer-self will give him enough time to fact find, and remediate office issues. Believe me, an endo who cares, who actually “takes” Graves’ patients, and is interested in us, is hard to find. so don’t toss him out too quickly!!
YOur comment (following) is “money in the bank,” regarding your Graves’ health care! Some of us have gone to MANY endos, trying to find what you found with the first endo!
Boomer
“I feel like I got lucky with my Endo- he was attentive, interested in me, communicated great, and respected my input.”

Re the wrong RX. Several things wrong there! When you called for a refill of the RX, the next step is for her to look at your CHART! duh. Of course, to swear, show the attitude she exhibited, and certainly dropping the F bomb, is unforgivable. I do have a couple questions, simply because I have worked in this health care arena for multiple decades. 1. Was the bottle labeled correctly? 2. Do you know what drug WAS in the bottle?
I am asking this, for if the bottle were labeled correctly, with with correct name and dose, it is possible the error was in the pharmacy.
But it does not sound like this is the case.

The lab work situation. I do what you tried to do. I ask for the hard copy at the time, and if they say they will call it in or send it electronically, if I am right there, I ask for a hard copy. You were already anticipating trouble,and that is what happened. So when you have your chat with your endo, prepare him for you interest in having a hard copy for the reason you explained.
Of interested, I now see my endo every 3-6 months. When I see him, I always ask for the hard copy, it is easy for him to do, then I HAVE IT! Perhaps, in several decades, all will go well electronically. But we are in the baby stage of paper records,electronic records, I want my paperwork!! Nothing wrong with that.

Continuing on the telephone/electronic/subject, the name misspelling is just silly, the way it escalated. AGain, I am not sure if the uptake person was trying to find you, and could not, either electronically or any other way, but it is a bit of a puzzle that such a simple call from one health provider to another, can get so screwed up, when asking for a spelling clarification. Wow.

YOu may get some further advice for others in this thread on this forum.
Shirley

[SueAndHerZoo]

#1179169

Hey Buddy . . . glad you are on your way to some relief. Here’s hoping that you are one of the ones who gets that thing killed off quickly and finds the perfect dosage of replacement in a very short time.

Sorry to hear about the unannounced vomit….. hope you were home when it happened.

Is your urine starting to glow yet? Have you kept yourself isolated from all living things? Did you have strict orders to double-flush and shower several times a day? Are you working or did you take some time off?

OK, that’s enough with the questions for a while….. keep us posted.
Sue

[Stymie]

#1179170

He aso hesitantly prescribed me 5mg Ambien (20 tablets only as a one-time thing) as I’ve been SO loopy from lack of sleep. While I’ve never been a long sleeper 1.5-3 hours just isn’t enough. He said that as my numbers continue to drop I should expect much better sleep. Makes sense to me

[/quote]

Hi boomer!

I don’t know if you know this or not but ambien can cause severe withdrawal and side effects if taken for longer than 7 days concurrently.

Just FYI since us graves patients have so much going on anyway, who needs more issues right?

God bless

Diane

[Kimberly]

#1179171

@Boomer – Glad that you have this phase of your journey behind you! Did you report the vomiting issues to you doc? Probably a good idea to keep him updated on that.

Agree with Shirley that the doc deserves to know what is going on in the office, but totally reasonable on your end to “fire” him if the response isn’t appropriate! One caution, though, would be to make sure you have an alternative endo lined up first. There can be lengthy waits to see a specialist these days, and you don’t want to get left in the lurch so soon after RAI! Going hypo post-RAI is believed to increase the risk of eye complications, so you definitely want a doc staying 100% on top of your levels over the coming weeks/months. Hopefully, the doc will do the right thing and you won’t need to deal with making a change at such a critical time.

Take care!

[Boomer]

#1179172

Lots of great input from you guys! And then there’s Sue: Yes my urine is glowing a nice shade of day-glo green. You already knew that but you HAD to ask didn’t ya?

Good advice regarding finding a back-up endo just in case he drops the ball. Really, though, as long as he acts like he cares that’s all I would expect/hope for from him in regards to his (lousy) staff.

In regards to the wrong ‘script: It was for Methimazole but was supposed to be Propranolol. I made it a point to tell her not only the med but the dose, frequency, quantity, and that generic was acceptable Had she actually read my chart she would have seen that I had received a script for 180 Methimazole tablets 5 days prior to my calling in the Propranolol. A little common sense goes a long ways.

I’m not too shook up – more like a feeling of disappointment. Call me crazy but I hold medical professionals to a high standard. I might have gotten spoiled as the staff at the hospital (Allegience Health in Jackson, MI) is so professional it’s mind-boggling. Everyone from food service all the way up to the doctors and nurses have been nothing but polite , courteous, and most of all accurate, informative, and knowledgeable. Absolute professionals in every way. To be perfectly honest they set the bar pretty high. Still, though, on that same token, I don’t feel that I’m unreasonable in expecting accurate meds, timely-call-ins regarding orders, and of course no swears from the staff at my endo’s office either!

The vomiting last night was short-lived and was well after the capsule was digested so I wasn’t too concerned. It was also listed as a possible common side-effect. Had it continued or should it happen again I will definitely call in but for now I’m feeling okay and ate good today. My thyroid is absolutely raging today- it’s mad at me for nuking it I guess. Another side-effect which indicates that the radiation is already attacking it and that’s okay by me! Die, thyroid, DIE!

Enough of my whining – help me out with my top-ten list please! You know – the important stuff:

Top Ten Reasons Why RAI Is Great:

1. Day-glo urine (in green no less)!

2. No need for a flashlight at night.

3. Moonlighting for extra money as a traffic light.

4. Freaking out the TSA screeners at the airport and playing “find the nuke” with them.

5. ?

Etc.?

That’s all I’ve got. A “top Four” list just doesn’t have the right ring to it. Can I get a little help?

Love you guys- thanks for your support!

Boomer

[Ardengood]

#1179173

Top Ten Reasons Why RAI Is Great:

1. Day-glo urine (in green no less)!

2. No need for a flashlight at night.

3. Moonlighting for extra money as a traffic light.

4. Freaking out the TSA screeners at the airport and playing “find the nuke” with them.

5. ?

Etc.?

That’s all I’ve got. A “top Four” list just doesn’t have the right ring to it. Can I get a little help?

Love you guys- thanks for your support!

Boomer
[/quote]

#5 – It is a great excuse for avoiding people you don’t want to see!

[Gabe]

#1179174

Hi Boomer! Glad to hear your RAI has been a breeze so far.

#6. You can charge your electronic equipment just by staring at it really, really hard!

Good luck with the inappropriate folks in your Endos office. Such a shame a great doc is surrounded by incompetence. He needs to know.

Hope the nuke works quickly for you. I’m a TTer so I’m not as familiar with Post RAI procedures. At what point do you get labs done? I’m assuming you stay on Meth until they know it dies? Or maybe not.

Cheers for a GLOWING good time!

Karen

[Raspberry]

#1179175

Hey Boomer, sending healing vibes your way! Good to see they didn’t nuke your sense of humor Don’t forget the sour candies to keep the saliva flowing and protect your salivary glands and lots of fluids for everything else.

[SueAndHerZoo]

#1179176

#7. You can tell people off, including medical staff, and never need to apologize. You can simply blame it on “Graves Rage” and solicit sympathy instead of resentment. This is the perfect time in your life to tell off everyone that’s caused you frustration in the past decade or two.

And, oh…. by the way……….

Sue

[Boomer]

#1179177

Bwaaaaa! See? I knew ya’ll had it in ya! Good stuff! Thanks for the laughs – keep ’em coming…

@Stymie

I spaced-out and didn’t address your concerns regarding Ambien aka Zolpidem and I thought I should. It’s some scary stuff- you are absolutely right about it being so easy to get strung out on. It is very similar to benzos in that regard- gotta be VERY careful indeed. I know a pharmacist who says “There are two kinds of people: Those who take Ambien every night and those who don’t take it at all”. I found that to be very telling indeed.

I stopped using drugs 23 years ago and I’m afraid to even take a Vicoden any more. Ambien scared me, too, but gave it a try. He only wrote me for ten days worth and said it was a one-time thing. Fair enough. I told myself that I would not take it unless I had at least two days in between uses, that I would never increase my dose, and that I would only take it if I absolutely had to.

Turns out I didn’t care for it and it wasn’t very effective. I slept for four hours instead of three and I felt like I was drunk as I laid there trying to sleep. Not worth it. I tried it again a few nights later and felt the same: Yuck. Between the addictiveness (is that a word?), the side-effects, and the fact that it didn’t really help me sleep any longer or better I just don’t see the point in taking chances with it.

I really appreciate the heads-up on that stuff. I’ve seen commercials and heard people talk about it like it’s the best thing since sliced bread and maybe it helps some folks but it’s not for me. Google “ambien horror stories” if anyone wants to be not only shocked but also have a laugh- some people get a little crazy on that stuff. Seems some people sleepwalk on it and end up driving, having sex, and waking up covered in peanut butter. I WISH it would have been that much fun for me!

I type WAY too much….

Thanks for all the support and concern. You guys are amazing!

Love and health (and peanut butter!) to all,

Boomer

[Boomer]

#1179178

@ Karen

I have labs scheduled for exactly 30 days after Nuke Day. I was told that it will take between two weeks and two months for my thyroid to slow down and that it will go hyper on it’s way out. I can feel it working in that it has a fever in it, is slightly swollen more than usual, and my throat is sore. This is all normal and means the RAI is where it needs to be and doing what it is supposed to do.

@ Sue

I’m gonna pretend that you didn’t stick your tongue out at me and that instead you were simply leaning in to kiss a turtle…

Beats kissing frogs right?

Speaking of frogs: Last night I let my dog in and it looked like he had a leaf on his back. Seems plausible as he walked under a tree to come in. I reached down to grab it as he walked by and it was slimy and it jumped!

Turns out it was the coolest little tree frog hitching a ride on a St. Bernard’s back. I should have taken a pic but after screaming like a little girl when I grabbed it I was too shaken to focus the camera.

Snakes on a plane?

Nope. T’was frog on a dog!

Good night all. Stay awesome,

Boomer

[karenz516]

#1179179

@Boomer, I had RAI on 12/14/12. The first two months were a little rough because the thyroid hormones were still raging and dying off, but my heart rate did come down from 180 bpm, and hovered around the 100’s give or take a spike here and there. The tremors stopped and running to the bathroom stopped, thank god!! I began to sleep better and the insomnia started to go away. In March my doc wanted me to take Methimazole (sp?) but I said eh, lets wait it out another month, to speed up the dying thyroid, my bloodwork was still showing me hyper, but the numbers started coming down. Sure enough, next round of bloodwork in April I went hypo. Heart rate is now between 50-70’s most days, I sleep much better, I have an occasional day of feeling yucky, but figure its just the Graves. Endo said I will always have Graves Disease, hmmm, still don’t quite get that since my thyroid died off. I was down to a 119 lbs. (and quite happy about that), but I gained 15 lbs. back eating mostly salad and yogurt, anticipating the hypo weight gain and trying to stay ahead of the game, hah!!! My hair thinned a little and I walked into my endos office and said, “you need to fix this, TODAY!!!!! He told me to take Biotin Forte 5 mg (behind the counter at the pharmacy), my once chia pet thick hair grew back right away and I also bought Biotin shampoo, did the trick!! As far as the weight gain, he looked at me and said, “you don’t realize how sick you were”. Okay, I get that, but I better not gain another ounce, he upped my Synthroid to 100 mg, I don’t feel like I put on any more wait, but he better have a Plan B in the wings, because he will really see a crazy lady if I gain any more weight!!!!

Here is too better days ahead for you, they are coming soon.

Karen

[snelsen]

#1179180

Boomer.
I can’t play this RAI game with you, cause I had a TT. I am the kid standing at the edge of the playground, watching all the RAI’s on the merry go round.
BUT WAIT!!! There are a whole BUNCH of kids over by the kickball field, all with cool scarves around their necks!!! JUST LIKE MINE!!!

How wonderful that TT/ers, RAI’ers and ATD’ers, are all such good friends, sharing this very questionable honor of being Graves’ers!

Karen.
I honor your thoughts about weight, because it clearly is important to you. But it is a thing that your doctor said, “you don’t realize how sick you were.”
That is important to remember and understand, and I am sure that you do and will.

As you know, there are some very dishonorable sites on the net that appeal to people who want to lose weight, and taking thyroid hormone is what they pitch and sell. It is a horrible thing to do, and people have DIED from doing this.

Karen, You are NOT asking, but just to review, because this is really important to you. And it is a good reminder to myself, and to others who are reading the thread. I know you know the other variables that continue to weight gain, and wait maintenance. Move more, eat less, eat properly, no nighttime eating, watch the empty filled alcohol calories.
Our whole society of sitting our respective national butts, not always our choice at all, with sedentary jobs at computers, decreased chances to have to walk as a means of transportation….TV, Games on phone and phone, all of this contributes to our national endemic and epidemic weight gain in our population. Oh. I forgot. Being female, and approaching menopause, and afterward, is another variable. My daughter, who is 48, found 4-8 pounds of added weight just HAPPENED at that time. She had done two things to make it go away. Stop nighttime eating (definitely seemed to be a factor, for usually carbs) and she started jog/running most mornings for about 15 minutes. she lives in So Calf. near Pasadena, so her weather almost always works for this. When she started, she was terribly out of shape, could not even run at all. So that is what she does to maintain.

Of note, I am remembering when you told us your heart rate was 180!!!!
In the hospital, this would be a medical emergency, and we would be concerned about your life! SO GLAD you got the good management for that, the good diagnosis of Graves’, and that you are moving toward OK now!!!
Shirley

[karenz516]

#1179181

@Shirley, I probably should have explained it better, but since being diagnosed with Graves and having RAI, I cut out caffeine and chocolate, have not drank pop in years and try not to eat red meat, I am trying to be more conscious of what I eat and being healthier, with that said, 15+ pounds in two months is a lot and my question for my endo was “wth”. I, as many other people work all day and have a longgggg commute each day so when I get home I am exhausted. I plan on starting yoga for the anxiety and as a means of exercise. I use to be a runner and I am still taking Pradaxa and Metropolol if my heart rate goes up above (100) lucky it has not. My cardiologist and endo think that the a-fib was as a result of the Graves Disease, Hyperthyroidism and Thyrotoxicosis and I go back in September for an echo of my heart to see how things are going. So I am trying not to over exert myself until the a-fib is figured out. I get up at 5:00 AM everyday and usually don’t sit down until 9:00 PM so I am not a couch potato, so I thought that was alot of weight in a short period of time. I usually eat a power bar for breakfast, salad and yogurt for lunch and try to eat a lean dinner. Of course a snack here and there but not 15 lbs. worth.

Yes when they admitted me to the hospital for two weeks, they were trying to get my heart rate down for most of that time. Initially, they were giving me Lopressor by IV every 15 minutes. Finally, after the RAI, it took about 2 months for my heart rate to come back down. It gets better, when the cardiologist released me from the hospital (I have since switched cardiologists) he released me on 200 mg of Lopressor 3 x a day and 40 mg. of Digoxcin 1x per day. They never told me my heart rate could go to low, duh, we had been worried for so long about it being too high, that one day I was walking into my dining room and boom, I passed out, my husband took me to the ER and my endo (god love him, on a Saturday afternoon) was there in an hour and admitted me under him, my heart rate was high 30’s and 40’s. The ER people slapped patches on me in case my heart stopped it would jolt it, uh, talk about freaking out. My endo took me off all the meds since my thyroid was calming down, so was my heart. Now, I still take the Pradaxa 2x times a day and the Metropolol 25 mg. only if my heart rate goes above 100 which it hasn’t.

Shirley, the greatest part through all of this was, my endo was so calming and kind and caring and kept saying everything will be fine, I will take care of you and he did!!

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