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radio active iodine pill, anyone know anything please

(21 Posts)
EarthMotherImNot Sat 02-Feb-13 11:27:51

I was diagnosed with an over active thyroid last year and have been on Carbimazole for this. My condition has remained pretty much the same, no worse, no better since then.

Saw the consultant for a check up yesterday and he threw me the idea of stopping the Carbimazole in a week or so and then having the radio active iodine pill.

I nodded and signed the consent but once I got home and read the bumff I don't know what to do.

I can't share the bed with my DH for a while (16 days) sit within arms length of anyone for longer than an hour.

Also I won't be able to hug my grandsonsad

I MUST avoid pregnant women at all costs. How?

It also says I need a card from the doctor to give to airports etc because I'll flash up as a terroristshock

WTF will I be letting them do to me. The doctor did say the next thing would be surgery to remove the thyroid if this doesn't work.

I'm also waiting for breast reconstruction but I can't see that happening any time soon.

Am I being an alarmist.......Help!!!

fallenangle Sat 02-Feb-13 11:38:20

No you aren't. Presumably doctor you saw was a specialist. I would do all research i could then go and discuss the treatment with my GP. I have wondered why and how someone having taken the pill is a risk to others but not to themselves. I would want that to be explained to me very clearly.

EarthMotherImNot Sat 02-Feb-13 11:44:04

Thank god, I haven't slept so was wondering if tiredness was making me overthink it.

Now I'm seriously thinking that surgery would be preferable. I don't think I could bear it if I found myself in conversation with someone who announced they were pregnant, you don't always know do you.

Dh is obviously worried as well but trying to hide it. Back to google it is.

DottyDot Sat 02-Feb-13 11:45:25

Hi there - I had this twice in 1999, so my memory's slightly hazy, but this is what I remember...

I was also on Carbimazole for a good while but was still over active - it's much worse for your body to remain over active than under active, so it has to be rectified. The choices are the radioactive iodine pill or surgery, so it's better to avoid surgery and go with the pill if possible.

The first time I had it it didn't work - I think the dose was too low. Basically it's a large pill and it destroys part of your thyroid gland (as I understand it - disclaimer - very hazy memory!!). I think the first time I had to avoid people for a few days and yes, not sit next to anyone and avoid pregnant women etc. However it didn't work, so a few months later I had a big dose, still via one pill.

The larger dose pill did work - I had to avoid people for longer - I think I was off work for 2 weeks as I worked in a child and family department and had members of staff who were pregnant. The pill made me feel quite nauseous for the following couple of days, but I wasn't sick. Just felt sorry for myself!

But it did the trick - destroyed all of my thyroid gland so I'm now on thyroxine for the rest of my life and get free prescriptions forever - hurrah! smile

Basically it was all absolutely fine! I went on to get pregnant a few years later so it didn't affect my fertility, it was a pain not being able to be near people and dp actually went away for a few days after I had it done, but all in all it was a lot less invasive than surgery - far easier to recover from taking a tablet!

Hope that helps.

CajaDeLaMemoria Sat 02-Feb-13 11:46:37

I've taken radioactive medication - and still do.

The avoiding people is tough, but you get used to it. For the difference it made to my health, it was more than worth it.

You do get a card because scanners will detect the radiation level, but the operators are used to it. Saying it makes you scan up as a terrorist is very alarmist - the machine simply reports the higher level of radiation, you flash the card and they let you through. No stress, no alarms, no scary security.

You shouldn't have prolonged exposure to children or pregnant women, but seeing one in a shop isn't the end of the world. You don't need to be in quarantine

It's a personal decision, but I'm glad I took it. So is OH, although he wasn't too pleased about not sharing a bed for half a month! I've avoided surgery and am healthier than I've been, with no negative side effects other than a fortnight without child cuddles.

sleepyhead Sat 02-Feb-13 11:51:57

My friend had this and it literally changed her life (she had Grave's disease and it was seriously affecting her health and quality of life). She didn't have children at the time and said it was a pain having to sleep on her own and have to think about where she went while she was "quarantined", but in the long run her thyroid problems were basically sorted (on permanent thyroxine).

She went on to have three healthy children and as far as I know has had no adverse health affects from the radioactive iodine - I think it's got a fairly short half life so it leaves the body relatively quickly.

digerd Sat 02-Feb-13 11:58:28

I had an overactive Thyroid gland in 1969, but had it really bad and was very ill, as was failed to be correctly diagnosed for a year.
Endocrine specialist put me on Carbimazole, but was overdosed and went very underactive. After 3 months of reducing the pills, I was still underactive. About 6 months later I was told Thyroid was producing the correct amount of Thyroxine now and came of the Carbimazole. I was told I was in Remission, which meant they expected it to return being overactive. Which it did.I then had the op - not a total, but sub-total. And I was fine.
But if I had been older and wiser I would have opted< demanded > the op 4 years earlier when it was diagnosed, instead of experimenting with the Carbimazole.
Didn't have radioactive pills in those days. The op is the best cure.

ProphetOfDoom Sat 02-Feb-13 12:09:18

Message withdrawn at poster's request.

EarthMotherImNot Sat 02-Feb-13 12:19:57

Firstly, thank you all. Strangely it helps to know others have "been there done that"

One of my ongoing issues with all of my health problems is that I am what they are calling "symptomless" I recently had a tiny gallstone removed in a camera down the throat horror, it caused me no pain and I wouldn't have known it was there had an MRI not shown it.

The thyroid issue showed up in a blood test, again no symptoms.

I was diagnosed with breast cancer not so long ago(2011) detected in a routine mammogram, no lumps bumps or anything. Weirdly I feel as though my body is secretly turning against me. Off to find a shrink nowsmile

I will talk to my GP on Monday and I'm also busy writing out some questions for the nuclear medicine department which is closed over the weekend, I found their number on the paperwork and it says they will be happy to answer any questions.

DottyDot Sat 02-Feb-13 13:36:42

I know what you mean about your body - me too! I was diagnosed with Graves in 1999 (hence the overactive thyroid) - I loved those symptoms though - lost weight even when eating loads and was hyperactive at work! Then was diagnosed with Coeliac a few years later, then a few years ago had bits of my shoulder start to crumble, then last year had gallstones (just had my gall bladder removed). I think autoimmune stuff can sometimes group together - I've also got PCOS which might have contributed towards having gallstones.

Good luck with your decision and definitely get as much information as possible from your GP/hospital docs.

CaseyShraeger Sat 02-Feb-13 14:04:28

I don't have the facts and figures and don't want to be alarmist, but I believe that there has been some research suggesting that treatment with radioactive iodine may be linked to a slightly higher than normal incidence of breast cancer later in life. Given that you've already had breast cancer once, that might be something to discuss with your specialist and with the nuclear medicine department as they should know the up-to-date state of research and whether there's anything to concern you.

CMOTDibbler Sat 02-Feb-13 14:22:54

EMIN, I used to give RAI treatments, and the restrictions for the hyperthyroid dose are very short, and the advantage over surgery is that there is that there is no risk of nerve damage, and can be done again if not enough thyroid cells die off.

The restrictions are in place as no one else but you benefits from taking the iodine, so the teeny amount of radiation they might get has to be avoided. For contact with children, its OK to have a quick hug, but not to sit next to them on the sofa watching a film for instance.

As to what Casey says, I'm not fully up to date, but I checked the medical publications and it does not seem to be true. Women who are hyperthyroid do have higher breast cancer rates, but RAI doesn't raise this risk

EarthMotherImNot Sat 02-Feb-13 14:33:36

Thank you again all. Makes me wonder what came first CMOT, Hyperthyroid or breast cancer. I wish just once I could go for a check up/blood test to hear them say "all normal, off you go and don't come back" sad

digerd Sat 02-Feb-13 16:01:04

My symptoms when overactive were being emaciated, despite never stopping eating high calorie foods. Then weekness set in, shaky hands, being paranoid , very nervy, bursting into rages or deep depression, My heart rate soared to 160 per minute sitting still and got an irregular heart beat. Profusely hot and sweating all the time, irrational, irritable, and thought I was having a nervous breakdown. Also my periods stopped. Then, in the evenings my feet and legs up to the thighs swelled to massive proportions, with a skinny upper body.
It was only diagnosed when my Thyroid gland swelled up and my eyes bulged.
Also got Scurvy and my teeth all became loose, as the racing metabolism failed to absorb my intake of vitamin C.

Before Thyroid problems were discovered, the overactive ended up in Mental Institutions as thought to be mad. < well I thought I was too>

gerbilsarefun Sat 02-Feb-13 19:56:28

I have read this thread with interest. I have been offered the choice of RAI or surgery for my overactive thyroid. TBH I thought the 'quarantine' was longer, I'm sure the endocrinologist said 3 months away from children, and I thought it meant totally away, I had visions of me bumping into one of my children (although 14 & 11 so not toddlers) in the house and them becoming radio-active. I also work with children and don't really want to take 3 months of work, but it sounds so much easier than surgery.

digerd Sun 03-Feb-13 11:34:22

The surgery was a doddle, even in 1974. Many MN members have had it more recently.
perhaps a new Thread under " has anyone had surgery for an overactive Thryroid gland?"

CarpeNoctem Sun 03-Feb-13 20:57:57

I had my radioiodine treatment on Friday. I've only had symptoms since the beginning of December and got diagnosed at the beginning of Jan, so it's all been pretty quick. I am probably the only person who didn't lose any weight with the Graves' .. Grr.. although the Dr explained that was because any increase in metabolic rate probably balanced out because I was no longer burning 600 cals at the gym every day.

It was really simple- one pill to swallow then isolation for 10 days (it's only 10 days because the next part of my job is in a labour ward and I can't be around babies if I'm emitting radiation. So far the only side effects from the pill are some diarrhoea yesterday (although that may have been caused by the sugar free mints I'm eating). I am waiting to ho hypothyroid (underactive) and start thyroxine. Being really careful about what I eat because I can't afford to gain any weight given I didn't lose any to start with!!

Don't be scared. I would recommend the iodine over the surgery because you get essentially the same result but with no operation. The risks of the op are nerve damage and also damage to your parathyroid glands (which could give you calcium imbalance problems), The RAI avoids any of these.

I didn't do carbimazole (methimazole here- I'm in the US). I didn't fancy taking a medication with a ton of side effects for 18 months hoping for remission when the remission rates are 30-50%. That would be lower in my case given the speed of disease progression and my family history (mum and aunt both had the same and failed to achieve remission with carbimazole).

PM me with any questions smile

digerd Sun 03-Feb-13 21:09:02

I had no damage caused by my op even in the "butchering" days of 1974, and needed no Thyroxine until 30 years later, when I went slightly underactive.
Even if there had been this radioactive iodine treatment had been around, I would still have opted for surgery. Having a destroyed Thyroid gland left in your neck, I would not have wanted.

EarthMotherImNot Sat 09-Feb-13 07:32:12

Good morning all smile

Quick question, I have to take my last Carbimazole om Monday, at the moment I'm taking it 4 days a week Monday to Thursday, previously I took it every day but this was reduced.

Will I have any symptoms when I stop taking it. Just curious! The RAI will be given on the 26th February so I'll be off it for a couple of weeks.

digerd Sat 09-Feb-13 13:54:06

I stopped the carbimazole the first time only when my Thyroid was pronounced to be working properly. I noticed nothing other that I was still not feeling good, but no worse., for several months. But I was taking them 3 times a day - began with 12 per day, which overdosed me and the 9 a day,6 then 3.
If you have not felt ill, either while overactive or taking Carbimazole, it's unlikely you will feel any different.

EarthMotherImNot Sun 10-Feb-13 10:17:02

Thank you digerd, fingers crossed smile

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