[ewmb]

#1068007

Hi,
I too was worried about not being able to get into the hospital to have my RAI. I think my fear was different than yours though. I had wanted this treatment for so long and was denied it a year earlier. I was worried that they would say no again. The worst part for me was just the waiting around to suck up the radioactive iodine through the straw. After that mentally there was a big weight lifted off my shoulders. The next few days were alright even though I felt bad physically. I knew that something "good" was happening to me. I was going to get healthy again. It has been almost five months since my RAI and I started levoxyl three weeks ago. I got to go out with my family last weekend to see a show. I am driving myself to work again. I have been able to think beyond feeling sick to do projects around the house again and helping my daughter more with school work etc..

I think you should ask someone to go with you to the appointment. I don’t think you sound like you’re in the frame of mind to go by yourself. Support is a great thing and I am not ashamed to say that I probably should have asked for more of it in my life.

You will become healthy again. It is a long road, longer for some than others, but just think of it this way. The days will pass whether you have the treatment or not. Do you want them to be passing toward becoming healthy or just pass with you still feeling sick and not being able to cope. Thinking like that is what has helped me realize that I can make it through this.

I wish you luck with your preparations and I hope that you will find some peace after your RAI.

Keep asking questions.

ewmb

[hockey]

#1068008

Thanks ewmb.

Just wondering – you mentioned you are now driving to work again. How did RAI impact driving – just wondering seeing as how I have a 2.5 hr drive to/from where I will be staying after my treatment.

Going to a show sounds like fun! Congrats! Was it good?

I actually had planned on going to a show on Oct 4th, tickets bought in the summer before I had even dreamt of doing this … I asked my sister to go in my place which she is happy to do. I haven’t told her why I’m not going to the show – she just asked if I was ‘too cool’ to see The Backyardigans!! Oh well, there are others to look forward too. I just hope that from the sounds of it – being tired is a huge problem – that by the time the next show comes around (and this is one of the few ‘date nights’ my hubby & I ever take) we will be able to see what’s planned for the middle of Dec as it will be a LATE night.

You’re right – getting healthy should really be the goal. I guess I’ve never really thought I was unhealthy – and that my body would just fix itself. My grandma had her appendix burst and lived to tell (she lived to be 96) – I guess I always thought I was/am resiliant like her.

As far as finding peace with RAI – how quickly does a turtle move? I’m not sure I’m even up to turtle speed, but at least I’m working on it. Hopefully in 1 week I will be ready.

[npatterson]

#1068009

Dear Hockey,

It sounds like you are not even telling your family (sister) about the treatment for your Graves’?!?
That seems to indicate that you have even more on your platter (plates are not nearly big enough for us). I wish we could hold some things for you.

I don’t know where you live, but it sounds like you have gotten some really strict "instructions" about post-RAI care. Have you looked at some of the medical sites (American Thryoid Association, AACE, The Endocrine Society, Mayo Clinic…etc) for some information?

The actual treatment is quite boring, but it sounds like you are concerned with the long-term consequences. That IS a tough decision, and one that only you can make.

Take care,.

[hockey]

#1068010

Yes Nancy,

It is the LONG term effects that I am concerned with … taking a pill isn’t really a big deal – the precautions are, but swallowing a pill I can handle.

Yes – I seem to carry an oversized platter around with me. I’ve mentioned it to my parents about the RAI, but no one else (I have 2 brothers & 2 sisters) – guess I figure they really don’t need to know – probablly wrong answer, but that’s what I’ve chosen for now. I guess I don’t want anyone to worry about me – they are all busy with their own lives.

As for the guildelines I am following – they are from a local hospital, not the one I’m using, but one that is local and reputable.

As for holding one of my platters – having all of you as a sounding board is WONDERFUL. I’m glad I found you when I did as it’s making all of this a little bit easier.

Thanks!

[ewmb]

#1068011

It wasn’t the RAI that affected my driving it was the fact that I didn’t feel well enough to do it. I drove off and on during the last two and a half years I’ve been going up and down with different levels with my Graves. The RAI in and of itself didn’t do anything to me that stopped me from functioning other than during those first few days.

I got to go see Cirque Dreams "Illumination" in Durham, NC. It was good but we were up too high in the balcony. I don’t like high places, never have.

I would go ahead and tell people if you can make yourself do it. You will be surprised, I hope, with the support that you will get. Your family, especially those that are blood relatives, should be told eventually if not now. Graves is mystery to some but sometimes you’ll find that someone else will say oh I have experience with that and it can be helpful to have someone live to talk to.

The long-term effects of the RAI are to kill your thryoid tissue and nothing else. I haven’t heard of anyone who had Graves and RAI having any issues directly related to the radiation. There is a small chance that it can affect your salivary glands which is why they tell you to drink , drink, drink and suck on candy and chew gum in the first few days. If you have TED then RAI isn’t usually the best choice but I don’t know if that’s directly related to the radiation.

My peace started to come very soon. That said it wasn’t an overwhelming feeling that has stayed in the forefront every day. Each day brings new challenges no matter what your health. I read something today in a magazine that said Man makes plans and God laughs. I guess that’s true that we can’t control everything.

I can now say that RAI was a great choice for me and that I highly recommend it from my experience.

ewmb

[hockey]

#1018946

Hello again.

Just wondering – how scared, afraid was everyone before they got their RAI done?

I’ve been planning the last week like crazy to make sure my family will survive without me, and that I will also survive my quarantine time so that’s kept me going. I have tons to do too until Oct 2nd, however, I am totally afraid that I will be like a runaway bride and rather than going to the hospital to get my poison, I will just keep driving, not sure where to – but just keep driving (especially since I will be going to/from treatment alone).

Has anyone else felt that way too? How did you overcome it and make yourself go?

I’m not sure why, but I am really scared of having the RAI – just as much as having surgery, so it’s not like I can switch options. I’ve kind of come to the crossroad where I think I really do need to treat my thyroid problem, however, I am VERY reluctant to do so.

I guess I’m just afrraid things won’t be the same – people will look at me different, I will act differently (although in some instances that would be a good thing!),.

I’m also afraid that my doctor will look at the numbers and then once medicated will say that they are ‘normal’ – however, as ski pointed out in another post re: child with graves, the child (in this case I am thinking it would be me) just hasn’t reached their (my) normal – and that my doctor won’t work with me.

Any suggestions to overcoming my fears?

[hockey]

#1068012

Thanks.

I thought I was slowly overcoming my fear – but this morning, with the house empty with the kids at gymnastics – it’s ALL rushing at me … I feel like I can’t stop crying – and generally I’m not one to cry – I kind of grew up with the thinking that to be tough/strong, one doesn’t cry. I need to STOP crying because when the kids get home we are going to go on an adventure – something to distract me, something for me (and the kids) to remember when I am gone.

I really need to pull myself together. I think some of what set this off is that I found out this morning that my grandpa is sick along with others in his nursing home and they have essentially closed to visitors – I REALLY wanted to go see him before my RAI as I haven’t seen him in a few weeks, and it will be a few more before I am able to go see him again.

Gotta go dry my tears – wash my face … kids are home!

[LaurelM]

#1068013

Hi,

Don’t forget that Graves Disease is heightening all your anxious feelings. It was when I started crying and couldn’t stop myself that I figured out something was wrong and went to the Dr. It is really hard but try to remember that this disease robs us of our normal thinking patterns. After you have been treated, you will get back (in time) to feeling healthy and strong. You ARE a resiliant person.

Consider letting more of your family in on what you are going through. You have Graves. You could use a little extra support right now. It is OK to ask for it. Would you want a family member to not tell you if it was happening to them and there was something you could do to help? They also need to know for their medical histories since there is a genetic componant for people with auto-immune diseases. The next time your kids have their physicals, be sure it is added to their records as well.

These icky feelings will go away. Really.

Laurel

[hockey]

#1068014

Hi Laurel,

Thanks for letting me know this should/will pass. Yes, I have been EXTREMELY anxious of late (mostly since we moved in April!) – moving, new school, new teachers, daughter starting pre=school etc. I have a hard time of letting go of the past and embracing the new things in life.

I hope the icky feeling does go away … NOW – just if I could get rid of this cold, fever and pink eye I seemed to have picked up this weekend (yuck).

– Does anyone know if they will refuse giving one RAI if they are sick??

Thanks for all your support.

[Ski]

#1068015

They wouldn’t refuse giving you RAI for being sick. I think the only reason they’d refuse to give it is if you’d been taking ATDs steadily up until the day of RAI.

[hockey]

#1068016

No concerns there about ATDs in my system as I haven’t taken them for 4+ yrs. After going through all of the prep work for childcare, arrangements for isolation etc. I hope that I won’t be turned away (only to have to agonize over all of this again).

Hopefully I will be over this cold etc. as I’m sure it will only make me feel worse post-RAI.

A common suggestion/trend for the posts related to post-RAI and how they feel – most suggest taking BBs … I have NEVER been prescribed them by my endo. As well, if my memory is correct, he hasn’t checked my heartbeat/rate since the first time I saw him – Jan ’04. Should I be worried … what if I do feel crappy after taking RAI since I will be 2+ hours away from my doctor, could I go to a hospital (there is one in the town where I will be staying)? What precautions would I need to take to reduce radioactive exposure – especially if it’s within the first 72 hrs?

[Ski]

#1068017

Beta blockers cannot be used by asthmatics, so if you are one, that would explain why your doctor has not prescribed them. They are used ONLY to relieve some of our symptoms (the anxiety, tremors), and protect the heart from possible arrhythmia, they do nothing other than that. The potential for needing beta blockers actually decreases once we’ve had RAI ~ except for that two-week "dumping" potential ~ so you may want to discuss it with your doctor, but it may be a non-issue for you. If you want to be very cautious, get a prescription for just a few pills (10 would be plenty), and talk with your doctor about what conditions they would want to see before they would give the go-ahead for you to take them. You would need to call the doctor’s office to confirm that you’ve experienced those symptoms and get final approval to start taking the beta blockers, but at least you’d have a method that wouldn’t require driving several hours. Once we start taking beta blockers, we need to "wean" off them slowly, but if you were taking them for such a short period of time, that may not be an issue. Again, something to discuss with your doctor.

There are two types of exposure issues with RAI. As you mention, the first 48 hours is the time when you need to be the most restricted, and here’s why. Most of the RAI you ingest is taken up into your thyroid ~ it should match the percentage that came out of your uptake/scan results. In other words, if your uptake results were 80%, then your thyroid will take up 8 millicuries out of 10 millicuries. The remaining 2 millicuries would be eliminated from your body through the fluid waste channels ~ mostly urine, but also a little bit in your saliva and sweat. For that reason, you would need to protect those around you from coming into contact with those body fluids, because if they take some in, it could reduce the function of their thyroid. It would be a small impact, but impact nonetheless, so of course doctors (being cautious beings) keep us from causing any impact by restricting our actions. Flush the toilet twice, don’t share food, don’t prepare food for anyone else, use disposable plates/flatware, use gloves (get gardening gloves), wash your bedding twice before anyone else sleeps in it, wash all your clothing twice before you wear it again. Those are some of the more typical restrictions. The doctor typically also recommends drinking lots of fluid and urinating often. That helps to keep the eliminated RAI "moving on" and also prevents it from collecting in the bladder for very long. We have seen that restrictions vary from doctor to doctor. I would ask for a copy of your doctor’s typical restrictions BEFORE you show up for the dose. It can be tough to go out and buy disposable plates when you’re supposed to stay six feet away from people…. (And by the way, get disposable BOWLS! I almost forgot that when it was my turn.)

In addition to this, there is the radiation coming from your thyroid. This requires limitations based on time and distance. If you are planning to be with someone for a long period of time, keep your distance. If you need to be close to someone, if they need to be close to your neck, then make it brief. The smaller the person, the more you need to be careful ~ and you also need to be careful with your pets. It’s not as if being near someone is going to "burn" them or make anything happen immediately, or even soon. Radiation is a lifelong, cumulative thing. Any exposure now would just be added to any x-rays or other radiation exposure (including sunshine) that a person would have in an average lifespan. It may or may not have any impact at all, in the end, but again, caution is always preferred.

Once the first 48 hours has passed, you’ve eliminated all the excess RAI, and the only issue remaining is radiation in the tissue in your neck. The RAI we take has a half-life of eight days, so every eight days, the effective dose that’s in your body is reduced by half. The amount of time involved in reducing risk to zero (or near zero) changes depending on the dose you’re given. You can figure that out once you know what your dose is. In the meantime, it’s good to know the risk is reduced some each day.

I hope that helps!

[hockey]

#1068018

Ski … can you clarify what you mean by the uptake and the amount of radiation remaining.

So – my uptake was 47% … does that mean that my thyroid will absorb 47% of the RAI dose I’m given? So, would that mean that I would be excreting more than if my uptake test was higher? And, if I excrete more in the first couple of days that would then reduce the amount of radiation I give off on days 3, 4 5 etc. Am I following correctly? What if the dose is 15-18mci as my endo suggested it would be?

I’m not asthmatic .. never have mentioned heart palpations to Dr. although my heart rate is typically 100 bpm, but should be less. He’s never said that I shouldn’t exercise, although, I have never asked (beyond when I was pregnant and first saw him). I just wish his regular secretary was there this week – she’s on holidays & the temp he has isn’t very good.

As for the sore throat – I’m SURE I will get it … I got it with the uptake test.

Ski wrote:wash your bedding twice before anyone else sleeps in it, wash all your clothing twice before you wear it again

"Ski" wrote:

wash your bedding twice before anyone else sleeps in it, wash all your clothing twice before you wear it again. As for washing clothes & sheets … on what day do you wash them? ]

Since I’m going away and have to take my linens etc, and there is no washer/dryer I will need to be prepared. Can I sleep in the sheets for a few nights – a week, 10 days?? What about clothes – can I wear them more than 1 day? It’s not like I’m going to get them ‘dirty’ seeing as how there won’t be any kids around and I will just be watching TV, colouring, reading books etc. although they will have radiation in them. Should I change them after the 24/48 hrs, or more frequently? These are things the doctors & handouts don’t seem to provide so anyone’s own experience is a big help. I also don’t have a ton of clothes and prefer to leave my better stuff at home so that it doesn’t get contaminated. I’ve also considered just throwing out the clothes that I wear the first day(s).

It is nice to know the risk is reduced each day re: radiation exposure .. although I am still going to extend from the recommended 7 days of precautions that I’ve been given to 10 – I’d rather be safe than sorry – especially when I have a thyroid problem and so does my father in law – no sense in increasing anyone’s chances more than they already are.

So – after the 8 days (half-life) – do you still need to be careful with exposure of children around the neck? How careful? My kids LOVE to be carried (although they will soon be too big to carry, almost 40lbs!) and I like to do it too. What about reading books in bed and snuggling with them as they drift off to sleep? When would that be ‘safe’?

Thx!!!

[Author]

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