Aa
Radioactive Iodine Treatment
I would appreciate any information on the after effects and recovery time for the thyroid treatment with radioactive iodine. I am due to be radiated on the 22nd of June, and from what I have read there are some very nasty after effects such as extreme joint pain and a great deal of nausea and vomiting. I live with my 18 year old daughter and am also concerned for her safety. I understand I can only be around her for very short periods of time after the radiation. I really need to know if I should vacate my home for the duration or if she will be safe if I stay to myself. My doctor said to expect no side effects, but I have read otherwise. Please elaborate for me, as I need to make plans for the soon to be treatment. Thank you so much!
I had RAI done over 35 years ago. There have been some moments where I had to adjust my meds to balance changes over the years. I watch what I eat and exercise often. Things really improved when I found a good doctor that put me on Tirosint and Armour. He also takes a more natural approach to medicine and works on nutrition, eliminating foods you are sensitive to, detoxification etc.. I am now over 60 and all things considered I am doing great.
i realise i must have sounded a very cold fish in that last statement, apologies, i am anything but, its just that, i wanted to get that message out. It a hugely emotional time to anyone going through this. I was a bundle of nervous energy waiting for the nuclear med team to come ad give me my dose. For myself the biggest form of defence apart from actual medicine, alternative and main stream, has been research. i think because it gives me a sensation of control, in what seems a very out of control situation. And i can feel I am not just being blindly lead, which in turn empowers me to feel confident about steps I take.
Emotionally and physically, coming off of my liothyronine, and becoming hypo for the two weeks pre treatment was exhausting, but copable. If you are about to embark on the journey, I would recommend, a) asking about the thyrogen injection, the thyrogen injection means you can stay on your T3 or T4 meds right up to treatment, without going hypo. I dont exactly know how close to treatment this is, as they refused my request for the injection, saying it was unnecessary and I stopped my meds, however my sister who two weeks previously had a rai does in a different part of the country was allowed the injection, perhaps due to funding, or the fact she has a toddler to raise, my youngest is 14... who knows. and b) if walking, the hpo route, and following a low iodine diet.. prepare, make low idoine...sauces, for ratatouille, stews, soups, before hand, and freeze them. For at the time that diet becomes all important lethargy can make it hard to find the motivation to cook. On eproduct I found a life saver was yeast extract by a company called meridian..... it has no additional salt, sea salt, though it does contain a trace element of salt, none is added and it make a great meatyish tasting base, in lieu of gravy granules, bouillon, tamari, all of which is on the ban list.... also remember, low iodine, is not no salt, its no Iodised salt, no sea salt, no ingredients marked.... potassium iodate, potassium iodide, sodium iodate, and sodium iodide.
Preparation is the one piece of advice i wish i had been given interms of the diet and going hypo, I wasnt and it was hard work, thankfully i have a very supportive, 8 year old son, who took on a lot of very boring, to him, veg prep work, other wise somedays i think i would have just grabbed a piece of fruit, as i just didnt have it in me.
as to my experience of the rai, ingestion, I felt a little sick, which was helped completely by anti sickness meds, the stafff have them on hand, a little crampy but on a scale of 1 - 10, 10 being the worst it was physically only a 2. My salivary glands swelled a little and were uncomfortable, but after 24 hours, as it recommended now that you do not suck sweets for the first 24 hours, in order to not pull extra 131 through your salivary gland, i found that sucking on sweets, and gentle massage with a beautifully soft cream, along my jawline was enough to reduced inflammation and soreness, leaving me also with silky skin.
Be as positive as you can about all your treatment, research, but be wary of blogs and forums, as they are only personal opinions not necessarily medically or otherwise accurate. I hope no one finds that offensive - its not meant that way, as the emotional support is unquanitifiable, but accept nothing as fact, not even my own words, look everything up, this is your life and your responsible for it. And empower yourself, you are a victim of a disease, but you dont need to adopt a victims role. Meditate, if you can, or just try simple breathing exercises, or visualisation, eat well, surround yourself with positivity, as much as possible. There will be times of fear, sorrow, and days that are hard, do not be scared to feel these, they are all part of your journey, and also a step you need as bottling up these feelings will only serve to deepen them. but feel them note them, they are a natural occurence in the face of your situation and pass through them, to a more positive stance. Be aware, that it is thoughts about a situation that make it overwhelming, not the situation itself. For the situation is as it is neutral, the emotion around a situation is created by yourself.
If you are a reader, Eckart Tolle, The Power of Now, is a very inspiring text.
Most of all love yourself, and become your actively best friend, for you are the closest one you'll ever have.
B
Emotionally and physically, coming off of my liothyronine, and becoming hypo for the two weeks pre treatment was exhausting, but copable. If you are about to embark on the journey, I would recommend, a) asking about the thyrogen injection, the thyrogen injection means you can stay on your T3 or T4 meds right up to treatment, without going hypo. I dont exactly know how close to treatment this is, as they refused my request for the injection, saying it was unnecessary and I stopped my meds, however my sister who two weeks previously had a rai does in a different part of the country was allowed the injection, perhaps due to funding, or the fact she has a toddler to raise, my youngest is 14... who knows. and b) if walking, the hpo route, and following a low iodine diet.. prepare, make low idoine...sauces, for ratatouille, stews, soups, before hand, and freeze them. For at the time that diet becomes all important lethargy can make it hard to find the motivation to cook. On eproduct I found a life saver was yeast extract by a company called meridian..... it has no additional salt, sea salt, though it does contain a trace element of salt, none is added and it make a great meatyish tasting base, in lieu of gravy granules, bouillon, tamari, all of which is on the ban list.... also remember, low iodine, is not no salt, its no Iodised salt, no sea salt, no ingredients marked.... potassium iodate, potassium iodide, sodium iodate, and sodium iodide.
Preparation is the one piece of advice i wish i had been given interms of the diet and going hypo, I wasnt and it was hard work, thankfully i have a very supportive, 8 year old son, who took on a lot of very boring, to him, veg prep work, other wise somedays i think i would have just grabbed a piece of fruit, as i just didnt have it in me.
as to my experience of the rai, ingestion, I felt a little sick, which was helped completely by anti sickness meds, the stafff have them on hand, a little crampy but on a scale of 1 - 10, 10 being the worst it was physically only a 2. My salivary glands swelled a little and were uncomfortable, but after 24 hours, as it recommended now that you do not suck sweets for the first 24 hours, in order to not pull extra 131 through your salivary gland, i found that sucking on sweets, and gentle massage with a beautifully soft cream, along my jawline was enough to reduced inflammation and soreness, leaving me also with silky skin.
Be as positive as you can about all your treatment, research, but be wary of blogs and forums, as they are only personal opinions not necessarily medically or otherwise accurate. I hope no one finds that offensive - its not meant that way, as the emotional support is unquanitifiable, but accept nothing as fact, not even my own words, look everything up, this is your life and your responsible for it. And empower yourself, you are a victim of a disease, but you dont need to adopt a victims role. Meditate, if you can, or just try simple breathing exercises, or visualisation, eat well, surround yourself with positivity, as much as possible. There will be times of fear, sorrow, and days that are hard, do not be scared to feel these, they are all part of your journey, and also a step you need as bottling up these feelings will only serve to deepen them. but feel them note them, they are a natural occurence in the face of your situation and pass through them, to a more positive stance. Be aware, that it is thoughts about a situation that make it overwhelming, not the situation itself. For the situation is as it is neutral, the emotion around a situation is created by yourself.
If you are a reader, Eckart Tolle, The Power of Now, is a very inspiring text.
Most of all love yourself, and become your actively best friend, for you are the closest one you'll ever have.
B
Hi,
One thing i never do is add comments on forums however this time i wanted to. I have just had my first rai dose, it was a low one and as such have been researching iodine 131. If you read at the bottom of wikipedia, it states do not use chlorinated bleach to clean areas of exposure (eg toilet - the brackets are my addition) as it can combine to create an iodine gas which spreads further than the original contamination. I wouldnt be alarmed by this just avoid to be extra safe. Everything at this stage is extra precaution, none of which can hurt.
best of luck with it all.
daisylady
One thing i never do is add comments on forums however this time i wanted to. I have just had my first rai dose, it was a low one and as such have been researching iodine 131. If you read at the bottom of wikipedia, it states do not use chlorinated bleach to clean areas of exposure (eg toilet - the brackets are my addition) as it can combine to create an iodine gas which spreads further than the original contamination. I wouldnt be alarmed by this just avoid to be extra safe. Everything at this stage is extra precaution, none of which can hurt.
best of luck with it all.
daisylady
Please dont cry :(
Yeah ...sure it hard getting the levels right afterwards but you take each day as it comes.
You take baby steps with the meds...dont rush it.
Yes I have had my good days and my bad days but I have probably one bad day out of 60 now which is a whole lot better than 60 bad days out of 60 which is what I had prior to RAI.
Dont just go and have RAI thinking that a 'pill a day' will do the trick ..it wont.
You have to learn the 'other side of the fence' so to speak.
Instead of learning hyper, you have to learn hypo and no matter how hard it is to get through this...you will do it. There is light at the end of the tunnel.
I know things look hopeless at present as I have been where you are and so too have many others here but thats what we are all here for .....to support each other.
Keep yr hopes up...stay positive no matter how hard it is and always know that there is someone here to chat too when the going gets tough.
I found Graves harder BEFORE RAI......its been so much easier after RAI.
The way I look at it is......you could be run over by a bus tomorrow, you could have cancer even without RAI.
My attitude was and still is...I wanted my life back.
I got it back.
Hugs My Dear Friend x
Yeah ...sure it hard getting the levels right afterwards but you take each day as it comes.
You take baby steps with the meds...dont rush it.
Yes I have had my good days and my bad days but I have probably one bad day out of 60 now which is a whole lot better than 60 bad days out of 60 which is what I had prior to RAI.
Dont just go and have RAI thinking that a 'pill a day' will do the trick ..it wont.
You have to learn the 'other side of the fence' so to speak.
Instead of learning hyper, you have to learn hypo and no matter how hard it is to get through this...you will do it. There is light at the end of the tunnel.
I know things look hopeless at present as I have been where you are and so too have many others here but thats what we are all here for .....to support each other.
Keep yr hopes up...stay positive no matter how hard it is and always know that there is someone here to chat too when the going gets tough.
I found Graves harder BEFORE RAI......its been so much easier after RAI.
The way I look at it is......you could be run over by a bus tomorrow, you could have cancer even without RAI.
My attitude was and still is...I wanted my life back.
I got it back.
Hugs My Dear Friend x
Ive been crying my eyes out today, after looking at all the bad news that goes with RAI, possible cancer, Ophthalmopthy, Weight gain, Doctors not being able to stabilize your levels it all sounds very depressing. Your's was the only good news, I am grateful someone had a decent experiance, I will try and keep my hopes up. Thank's again
I am doing great now and went back to fulltime employment last October (2008).
I have just changed jobs and will be commencing another 2 jobs at the end of June.
I had the flu which put my TSH up to over 6.0 in 2 weeks and it took a few weeks to get that back down but other than that , am doing good.
I was 77kgs (16kgs weight gain BEFORE RAI) and am now just over 60kgs and not even trying to lose weight.
The biggest healer is to stay positive.
I have just changed jobs and will be commencing another 2 jobs at the end of June.
I had the flu which put my TSH up to over 6.0 in 2 weeks and it took a few weeks to get that back down but other than that , am doing good.
I was 77kgs (16kgs weight gain BEFORE RAI) and am now just over 60kgs and not even trying to lose weight.
The biggest healer is to stay positive.
I had it, no problems during or after.
However, everyone reacts to things differently. Do get all the instruction for having though.
Best of Luck!
However, everyone reacts to things differently. Do get all the instruction for having though.
Best of Luck!
Your post is so helpfull and alleviates alot of my concerns, Thank you! Im curious as to how it has gone after the rai and with the hypo and the meds for it, any reactions to the meds? how are you feeling now? I tried the Methimazole and had a severe allergic reaction yesterday I was covered head to toe in rash, today a sore throat, my Dr said to stop methi- and had me make an appt this week, he says there a 2 opt one being the rai and another he didnt discuss what that one is. Thank you
I had RAI on June 27 last year and had no nausea, vomiting etc.
The only side effect I got later that evening was a hot neck for an hour or so (like a feeling of swollen glands) and I put a cold wet towel round my neck and the sensation went after an hour.
I couldnt handle sucking on sour lemon candies (to stop saliva glands from blocking) as I had always had the 'choking sensation' long before RAI so I sucked on lemon slices non stop for 2 days and drank more water than a goldfish lol. The more water you drink the better. They tell you to 'flush' non stop.
I used plastic cutlery and plates for 3 days and disposed of everything in another rubbish bin outside.
I stayed in pyjamas until day 3 as I found it easier than washing clothes all the time.
I slept in a separate room from my partner, didnt cuddle him or kiss him and only stayed in the same room as him for an hour at a time then left the room for 15 mins to stop him being eradicated (exposed to RAI).
Do as Skeeter said and buy a slab of water as you are going to need it.
I slept fortunately but slept on a blow-up bed in another room for 3 nights.
As long as you stay away from children and pregnant women for a week (I did it for 2 weeks to be on the safe side), then you and your daughter will be fine.
I was told to wash the toilet down each time I used it so I kept a bucket of bleach water in the toilet and just washed the toilet down each time I used it and flushed twice each time.
I was petrified when I had it done, expecting to 'glow in the dark', green things to grow out my ears etc...and NOTHING happened.
I think I slept out of sheer mental exhaustion more than anything.
I just wanted the 3 days of isolation to be over as it seemed to be the longest 3 days of my life.
I felt like a goldfish with all the water I drank too lol !
I used plastic surgical gloves most of the time to make sure I didnt contaminate anything....that set my mind at ease a lot.
Honestly and truthfully...... if I had to have it again, I would.
It is made out to be one BIG dramatic thing and all it really was for me was an inconvenience.
The hardest thing is not being able to have a cuddle :(
Funny enough my partner was tested a few weeks ago for his thyroid as he wasnt well with his Diabetes and his thyroid function test came back NORMAL.
So no, he didnt get contaminated by me.
Your Daughter will be fine being in the same house and even the same room as they say that another person must be an arms length away from you.
Skeeter is right...it is scary but you will be fine.
Nothing drastic happens and the weeks following...you will feel the best you ever have until the levels start to drop and you start to head Hypo.
I was Hypo after 5 weeks with a TSH of over 6.0.
Try and get your Doctor to see you fortnightly after RAI so that yr levels dont drop too low before you are put on a T4 med.
Message me if you want........I'm always here to help.
All the best :)
The only side effect I got later that evening was a hot neck for an hour or so (like a feeling of swollen glands) and I put a cold wet towel round my neck and the sensation went after an hour.
I couldnt handle sucking on sour lemon candies (to stop saliva glands from blocking) as I had always had the 'choking sensation' long before RAI so I sucked on lemon slices non stop for 2 days and drank more water than a goldfish lol. The more water you drink the better. They tell you to 'flush' non stop.
I used plastic cutlery and plates for 3 days and disposed of everything in another rubbish bin outside.
I stayed in pyjamas until day 3 as I found it easier than washing clothes all the time.
I slept in a separate room from my partner, didnt cuddle him or kiss him and only stayed in the same room as him for an hour at a time then left the room for 15 mins to stop him being eradicated (exposed to RAI).
Do as Skeeter said and buy a slab of water as you are going to need it.
I slept fortunately but slept on a blow-up bed in another room for 3 nights.
As long as you stay away from children and pregnant women for a week (I did it for 2 weeks to be on the safe side), then you and your daughter will be fine.
I was told to wash the toilet down each time I used it so I kept a bucket of bleach water in the toilet and just washed the toilet down each time I used it and flushed twice each time.
I was petrified when I had it done, expecting to 'glow in the dark', green things to grow out my ears etc...and NOTHING happened.
I think I slept out of sheer mental exhaustion more than anything.
I just wanted the 3 days of isolation to be over as it seemed to be the longest 3 days of my life.
I felt like a goldfish with all the water I drank too lol !
I used plastic surgical gloves most of the time to make sure I didnt contaminate anything....that set my mind at ease a lot.
Honestly and truthfully...... if I had to have it again, I would.
It is made out to be one BIG dramatic thing and all it really was for me was an inconvenience.
The hardest thing is not being able to have a cuddle :(
Funny enough my partner was tested a few weeks ago for his thyroid as he wasnt well with his Diabetes and his thyroid function test came back NORMAL.
So no, he didnt get contaminated by me.
Your Daughter will be fine being in the same house and even the same room as they say that another person must be an arms length away from you.
Skeeter is right...it is scary but you will be fine.
Nothing drastic happens and the weeks following...you will feel the best you ever have until the levels start to drop and you start to head Hypo.
I was Hypo after 5 weeks with a TSH of over 6.0.
Try and get your Doctor to see you fortnightly after RAI so that yr levels dont drop too low before you are put on a T4 med.
Message me if you want........I'm always here to help.
All the best :)
Ask you Dr. for printed instructions after RAI. You should get another set of instructions from the hospital or facility doing the RAI.
The main safety issue is - don't sleep in the same bed with someone for about 4 days.
The precautions will depend upon the doseage given. More millicuries = more precautions.
I had RAI 12/08. It was 28.7 millicuries. I had no nausea, joint pain, vomiting, etc. Nothing! The only complaint was not being able to sleep. That was from going off the anti=thyroid drugs for 2 weeks.
You can't contaminate where you sit or what you touch. If you are cooking, don't lick the spoon and put it back in the pot. You can get a separate instruction sheet for if you only have one bathroom that you share with others.
Buy a case of water in plastic bottles. You will need to drink lots of water to flush your system.
I know how scary this is. You'll be just fine.
The main safety issue is - don't sleep in the same bed with someone for about 4 days.
The precautions will depend upon the doseage given. More millicuries = more precautions.
I had RAI 12/08. It was 28.7 millicuries. I had no nausea, joint pain, vomiting, etc. Nothing! The only complaint was not being able to sleep. That was from going off the anti=thyroid drugs for 2 weeks.
You can't contaminate where you sit or what you touch. If you are cooking, don't lick the spoon and put it back in the pot. You can get a separate instruction sheet for if you only have one bathroom that you share with others.
Buy a case of water in plastic bottles. You will need to drink lots of water to flush your system.
I know how scary this is. You'll be just fine.
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