[hockey]

in reply to: Is Doing nothing an option? #1068149

what if you have a gut feel that none of the treatment options are right for you … refuse surgery, fear of RAI & allergic to ATDs? I guess either way you can always second guess yourself in the long run – oh, I should have .. but, by choosing RAI or surgery there is no going back, they are permanent, and the only ‘temporary’ option has been ruled out due to allergies.

gut feel is that:
– it won’t work
– supplementation will be a HUGE hassle with having to taken on empty stomach or that I will not be able to tolerate it – there are risk factors to the supplements same as there are risks with not treating graves and I HATE taking pills – now I will be stuck with taking one for the rest of my life
– by taking RAI you’re not really treating graves only its symptoms
– my dr. won’t work with me to find ‘my’ normal
– something is going to happen post-RAI (complications – thyroid storm, heart attack)?
– fear that I’m going to accidentally expose someone to radiation (even though I am going to be alone for 10 days) and that a higher dose of RAI (15-18mci) is going to make me more radioactive, and for longer
– that I’m going to gain a TON of weight so that instead of having graves side effects to worry about, there will then be a whole hose of new problems – obesity, diabetes, joint & mobility problems
– the hassle of weekly blood tests (as ordered by my dr) – gee, I’m going to look like a druggie soon with all the holes from blood draws.

sorry – I’m just scared and bitter.

[hockey]

in reply to: Is it ok to be fearful of having RAI? #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!!!

[hockey]

in reply to: feeling better #1067927

Hi Karen,

Glad to hear that you are feeling better! Yes, sleep is nice too – it seems to make a world of difference for everything.

Just wondering – if you don’t mind me asking, if you do – sorry & just ignore – what were you feeling?

As you may have noticed, I too will be having RAI (this Friday) and I am very nervous/anxious about the whole thing. I would really just like to leave it all alone and do nothing, but it’s come to the point where I really should do something. Although for some reason, I seem to have a gut feel that something is going to go wrong – not sure what, but just have a nagging feeling that something might happen (either to me, or to my family) after having RAI & during my quarantine period.

Any symptoms post RAI would be helpful for me to be on the lookout for seeing as how I will be 2+ hours away from home and alone so I should kinda know what may happen as there will be no one there to ‘look out’ for me and cell phone service is really crappy too.

Thanks so much.

[hockey]

in reply to: Is it ok to be fearful of having RAI? #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?

[hockey]

in reply to: Is it ok to be fearful of having RAI? #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.

[hockey]

in reply to: Is it ok to be fearful of having RAI? #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!

[hockey]

in reply to: Is it ok to be fearful of having RAI? #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!

[hockey]

in reply to: Is it ok to be fearful of having RAI? #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.

[hockey]

in reply to: how do you get over the anger? #1068095

Yes – I know that (read previous posts) I don’t want to have to go through this twice .. once is MORE than enough for me. My uptake was 47% so maybe that’s why he suggested 15-18, but then again, he said it was only a guess.

What is the impact of a higher dose on your radioactivity? I’m guessing I will be radioactive for longer – but by how much?

So – I’m asking my husband if there are things I can make ahead of time and freeze so that I know the kids are eating healthy while I am away … he said no, we’ll go grocery shopping .. but I NEED to go shopping before I have the RAI as I am going to a cottage where there is NO food – and he knows this. I said there is NO WAY I can be walking around a grocery store on the day I get RAI or even the day after. Plus I was hoping that I could have some control over what the kdis are eating as I’m sure he will feed them pasta for 50% of the time & they will get NO veggies etc. Anyhow, he keeps acting as though this is no big deal – his comments are ‘its a little bit of radiation’ – and he’s seen the list of precautions I need to take, he’s been around while I’ve agonized over the decision of what to do right from day 1 (5 years ago!) – so not sure why he can’t seem to ‘get’ this is a big deal for me, one that I really don’t want to do, but feel as though it is necessary to try and become a little more stable in my moods. I wish I had a punching bag right now.

[hockey]

in reply to: how do you get over the anger? #1068093

Thanks for your words of wisdom Nancy. What a good idea about the discussion note on the calendar. If we did the ‘discussion’ thing on the calendar – I would need a MUCH BIGGER calendar than I currently have (or else I would need to write very small). We could easily have ‘discussions’ about everything.

As for how elf knew I was from Canada – guess she just noticed it in a previous post. I think one tends to take notice when someone is from the same area.

My endo called me this evening at 7:30 to see what I wanted to do – go ahead with RAI? Guess I can’t complain too much about the guy as others have written they wait quite a while to get test results etc. I just wish our personalities didn’t clash so much – maybe if he were more of a jock/coach(?) than a walking encyclopedia.

So – I’ve decided that I will go ahead with RAI – who knows. I can’t say I’m more optomistic, but I’m a bit between a rock & a hard place.

Does anyone know what a ‘typical’ dose of RAI is? My endo suggested it will be between 15-18 mci, but that the final number will be up to the nuclear medicine guys. Is that high?

I’m hoping that by doing the RAI it will help me figure things out. My endo said he wants a blood test 1 wk after the RAI (and then weekly – what a pain, at lease in Canada I don’t have to pay for it!), I told him I will be away for 10 days, so it will be day#11 before it’s done – he said he can live with that and to enjoy my ‘vacation’ …. well, it won’t be a vacation, but maybe it is a long awaited rest that I have never thought I needed …. does anyone have any good movie suggestions – I haven’t seen a movie in 5 years (well, I guess I did see Marley & Me a few weeks ago, but that’s the only one)!

Thank you for your support … I will still need it in the days/weeks/months ahead.

[hockey]

in reply to: how do you get over the anger? #1068090

Thanks for the replies – nice to hear from another Canadian too!!

The sad thing is – I’m not sure what ‘happy’ is anymore.

I’ve always tried to be a pleaser – make sure everyone else is happy/looked after before taking care of me … so, what really makes ME happy?? I don’t know.

As for anger towards my husband – yes, that’s there. Often I think he’s an idiot … but then again, I feel as though he is talking to me as though I am 5! Even though he doesn’t mean to make me feel belittled, dumb etc. (at least I don’t think he really intends to) – he does, and it makes me mad – but if/when I try to explain it to him, he just doesn’t ‘get’ it, he doesn’t ‘get’ me. Then he tries to give me space and the space just creates a bigger distance, and so on and so forth.

How do you not end up being close to your kids after an absence? … mine just wouldn’t understand why I can’t read them a book, snuggle with them in bed, carry them around post RAI … so, I’m waiting longer (10 days is my goal with 8 days being my minimum) – the 8th day return would be based on guidelines I found from one of the hospitals nearby (not the one where I would be getting the RAI, but one that is still close).

[hockey]

in reply to: Is Doing nothing an option? #1068148

Thanks for the wishes of good luck … I’m going to need it whatever I choose.

I’m going on the more cautious side of 10 days (Canadian & American websites have shown 7-10 days) because my kids don’t need any more chance of developing thyroid problems – seeing as how there is some genetic component, not sure what exactly, but it is there because of me and my father-in-law – they don’t need any more reasons (exposure to my RAI) to increase their risk of thyroid problems.

It’s also not really possible to say to a child – sorry, I can’t read to you, snuggle with you, hug/kiss you etc. so it would be easier to just not be around instead of rushing back after day 4.

[hockey]

in reply to: Is Doing nothing an option? #1068146

What made you decide to go ahead and do the RAI?

I don’t feel that bad right now … yes, I probably get winded faster than I should, but – it hasn’t really slowed me down. As for being moody – I have always been a bit moody, guess I just hid it better from my husband than I have been of late.

How do you go about telling your kids (2 & 4) that mom isn’t going to be home for 7-10 days because of RAI without scaring them? My aunt’s dog just died and I told the kids it’s because he was old & sick – will they think the same is going to happen to me? What do I do with all that time, I’m going to go stir crazy being alone = plus I can’t DO anything/go anywhere (ie. shopping) due to radioactivit exposure. I have NEVER been away from my kids – with the exception of when I was in the hospital for the birth of my 2nd. My friends may say that ‘wow, you get a break from the kids, how great!’ – well, it’s not great – it SUCKS and I would prefer to hide the reason why I’m away from others. I don’t want them to be concerned about the health/radioactive exposure of their kids when they are around me when I need to help out at nursery school and host my kids bday parties.

Also- how do you go about telling your family so that they aren’t worried. My doctor has said about the RAI ‘its no big deal’ … but to ME it’s a HUGE deal – being away from my family (and alone post-treatment), having to take supplements for the REST OF MY LIFE.

The problem with taking the supplement, is that it will need to be out of reach from the kids – and for me, when it’s out of reach/sight, it’s out of mind. I don’t want to be like my 80+ yr old grandfather who has flourescent signs posted all over his room reminding him to put his hearing aids in. Plus – they always say not to keep medicine in the bathroom, so, if I followed that, taking it at bedtime when brushing my teeth really wouldn’t work.

My husband’s biggest goal of me doing the RAI is so that I am: happier, more positive and less angry …. will RAI fix that, or just make it worse .. if the RAI doesn’t work, or I do feel worse – I will be blaming HIM and we will most likely end up going down the same path our parents went (divorce) and I don’t want that for my kids … I have always felt like the odd person out for everything – having Graves seems to just keep that ball rolling.

any thoughts?

p.s. I know that I may be a bit cautious – but, as my dr. put it – there is no data on exposure effect on kids < 5 to radioactivity. So – when I am around this age group ALL the time, I will take NO chances, and from what I’ve read 7-10 days is needed.

[hockey]

in reply to: Newly diagnosed & have questions please #1069169

Hi Jessica,

Just wondering – what was the natural treatment your naturopath suggested? I’ve been trying accupuncture, at first it seemed to calm me down and the numbers from my blood tests even lowered a bit, but it doesn’t seem to be working now.

Thanks!

[hockey]

in reply to: Is Doing nothing an option? #1068142

Thanks for the reply Kimberly,

I guess I know that I really should not be letting it go – it’s just that my endo is a brutal listener. Another dr. I had told me the endo dr. is a walking encyclopedia with the personality of a snail – much agreed with. He doesn’t listen, and he seems to think that TSH levels are the end-all, be-all rather than how I am actually feeling. As for finding another – not sure how that would work. It takes weeks to see my gp and any other endo would be 1+ hours away. So far my endo has been great for fitting me into his schedule, just if he would listen!

The only routes to treatment that I have are either surgery (going under scares me) or RAI as I am allergic to ATDs. I also don’t like the idea of having to take the replacement for the rest of my life. I am AWFUL at taking pills (vitamins are a chore), and it will be even worse if I need to take the meds at the same time each day and on an empty stomach since it never seems to be empty.

Remembering back, it seems as though my thyroid problems started when I came off the pill. Any thoughts out there as to what the outcome would be if I went back on the pill – at least that’s reversible. Thanks again.

[Author]

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