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Hyperthyroidism - Radioisotope


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10 replies to this topic

#1 M*12

Posted 05 December 2012 - 12:11 PM

Hi everyone,
I am wondering if anyone out there has been diagnosed with a hyperthyroid post partum? I am 7 Months post partum and have an overactive thyroid/hyperthyroid. My GP has requested I have a Radioisotope scan to better determine exactly why my thyroid is hyper. However to do this test I must pump and dump my milk for 48 hours post test and furthermore not be in contact with my daughter for 5 hours post test. I went back to my GP to ask if it was really necessary at this point to do the test and if there was anything else we could do or other tests but her answer was no I must do this test. Has anyone else had have a radioisotope scan? if so what were the recommendations re: milk and contact with your baby? I have read a bit of contradicting information and been told different things. Any information would be muchly appreciated. Thank you

#2 emm79

Posted 05 December 2012 - 12:20 PM

Hi M*12, yes I had post-partum thyroiditis.  Mine was initially hyperactive, then underactive, and now seems to be returning to normal.  My experience is that a specialist won't do anything before 12 months, as it can take that long to return to normal if it is simply post-partum, and not thyroid disease, and will monitor it until then to see if it's changing and returning to normal on it's own.

I would try and push for getting blood tests every 2nd month between now and then; there's no point getting them done any more frequently than that, and changes can be quite slow.  When were you diagnosed?

#3 M*12

Posted 05 December 2012 - 02:21 PM

QUOTE (emm79 @ 05/12/2012, 12:20 PM) <{POST_SNAPBACK}>
Hi M*12, yes I had post-partum thyroiditis.  Mine was initially hyperactive, then underactive, and now seems to be returning to normal.  My experience is that a specialist won't do anything before 12 months, as it can take that long to return to normal if it is simply post-partum, and not thyroid disease, and will monitor it until then to see if it's changing and returning to normal on it's own.

I would try and push for getting blood tests every 2nd month between now and then; there's no point getting them done any more frequently than that, and changes can be quite slow.  When were you diagnosed?


Hi emm79, thank you so much for the reply. I was diagnosed in October and had a blood test a month later (mid nov), that is when my GP requested I have this radioisotope scan of my thyroid. Did your doctor suggest you have any type of scan? Thanks again.

#4 julieandmore

Posted 05 December 2012 - 03:08 PM

My partner and I were both diagnosed with hyperthyroidism approximately 6 months after the birth of our kids (we have had it suggested to us that it may be related to the ivf drugs).  In my case I attended the ER due to heart palpitations and was referred to an endocrinologist who manages my condition.  She wanted me to have the test you're referring to but after a lot of  stress and research I declined because of the feeding and contact with baby conditions you are referring to... Am I meant to believe that I'm radioactive for 5 hours and then perfectly fine after 6?   While she would prefer that I had the test as it gives her clear and definitive information she understood my position, so I have been having blood tests every 6-8 weeks and she adjusts my medication accordingly.  As I wanted   to continue to bf my daughter I made sure the dosage of 'ptu' was low enough (apparently 3 per day is safe but I refused to take more than 2 and am now on one). As the concentration of the drug is at its highest approx 3-4 hours after taking it I also avoided feeding her during this window where possible.  I strongly suggest you get your GP to refer you to an endocrinologist and also do your research into whichever medication they want to put you on.  I have found that Pharmacists have more info on medications than most GPs or specialists so make sure you tell them you are bf and ask for all info on the drug when you fill your script.   Good luck.

#5 HerringToMarmalade

Posted 05 December 2012 - 03:21 PM

Have you been to a specialist yet? It was the specialist - endocrinologist - who organised these tests for me, not the GP. My original GP actually completely stuffed up my treatment so I now take anything a GP says with a grain of salt, they won't necessarily be highly educated about this condition, especially when you add breastfeeding etc into the mix. I would not be letting the GP do anything without seeing a specialist.

The radioisotope scan would show the size of your thyroid, they can become enlarged or uneven which indicates a problem, however they may not have changed at all - I had some of the highest levels my specialist had ever seen but my actual thyroid was still normal looking. So I'm not sure how necessary the scan really is.

#6 emm79

Posted 05 December 2012 - 03:41 PM

In my case I was pretty much asymptomatic, well didn't have any symptoms that you wouldn't otherwise attribute to having a 4 month old and BFing, eating like a horse and fatigue!  I didn't have an elevated heart rate or anything like that.  Mine got picked up because I noticed the shadows at the base of my throat were different, felt it, and realised my thyroid was enlarged.

I did have an ultra-sound, which shows the size of enlargement.  From memory, a radioisotope scan is used to determine whether it's post-partum or Graves disease; post-partum has a low uptake of iodine, whereas Grave's has a high uptake of iodine in the thyroid (I'm sure that's which way around it is).

I actually ended up changing GP's because of mine; the GP I was seeing didn't even acknowledge the possibilty of it being post-partum, even after I asked about that possibility, and wanted to send me straight off to the specialist, so I switched to seeing the GP I'd started taking my son to, who agreed that the best thing was to monitor it for a little while before sending me off to the specialist - and the specialist agreed, all they would have done was the same thing, waited another two months then checked the levels again.

#7 soontob6

Posted 06 December 2012 - 04:08 PM

Hi there,  my gp diagnosed me last week with Graves Disease.  I went to see her when I noticed one eye was slighly bulging and she said she could see my thyroid as soon as I walked in (I didn't even know where it was rolleyes.gif )  Anyway, I went for blood tests and it came back as high levels for the hormones ?for hyperthyroidism.  My antibody's though were only 88 and she said they are usually in the thousands with GD so I'm not 100% sure now. Annyyway, I asked if it could be from my last pregnancy (no 4).  He is now 10 mo and bf.  She said no because it usually happens very soon after birth, not this long after.  But then I thought, I wonder if it did happen soon after birth but didn't noticed the symtoms until now??
Anyway, getting to the point, I've been told I have a month to wean, as then they will put me on a higher dose, and I have to get a test done to see which part of the thyroid is getting attacked, which I'm gathering is the same test that you've been referred for?  And she said I def have to be stopped bf before I get that test.

#8 M*12

Posted 06 December 2012 - 05:36 PM

Julieandmore- Thanks for the information and tips.

HerringToMarmala… -I haven’t been to a specialist, only my GP. The GP suggested the possibility of seeing a specialist/ endocrinologist after the test had been done, depending on the outcome.  I think I am going to get a second opinion and go from there, and have my bloods checked again in a few weeks to see how my levels are. Thank you for your reply.

Emm79- Thanks again.

You’ve all been very helpful.


#9 M*12

Posted 06 December 2012 - 05:47 PM

QUOTE (soontob6 @ 06/12/2012, 04:08 PM) <{POST_SNAPBACK}>
Hi there,  my gp diagnosed me last week with Graves Disease.  I went to see her when I noticed one eye was slighly bulging and she said she could see my thyroid as soon as I walked in (I didn't even know where it was rolleyes.gif )  Anyway, I went for blood tests and it came back as high levels for the hormones ?for hyperthyroidism.  My antibody's though were only 88 and she said they are usually in the thousands with GD so I'm not 100% sure now. Annyyway, I asked if it could be from my last pregnancy (no 4).  He is now 10 mo and bf.  She said no because it usually happens very soon after birth, not this long after.  But then I thought, I wonder if it did happen soon after birth but didn't noticed the symtoms until now??
Anyway, getting to the point, I've been told I have a month to wean, as then they will put me on a higher dose, and I have to get a test done to see which part of the thyroid is getting attacked, which I'm gathering is the same test that you've been referred for?  And she said I def have to be stopped bf before I get that test.


Hi Soontob6, My daughter is 7 months and  my hyperthyroidism was only picked up because of a routine blood test to check my iron, vit D, ect... As for symptoms I can't notice anything that breastfeeding and being a new mum wouldn't otherwise attribute to (like emm79 mentioned). So maybe you have had a hyperthyroid from an earlier date. hmm. Thank you, and good luck with everything.

Edited by M*12, 06 December 2012 - 05:54 PM.


#10 Fossy

Posted 06 December 2012 - 06:11 PM

I had post partum Thyroiditis after I had my son, he is just 12 months and my levels are stable, finally!  I went hyper to hypo to hyper to hypo, so it's been fun!

Definitely get a referral to an endo, a reproductive endocrinologist is best if you can find one, if you're on Melbourne I can recommend a great one.  

I, like emm79, was told they won't do anything before 12 months.  The radioisotope treatment wasn't something I was willing to do as ppt is usually transient.  Also check with your doctor as I was told I'd have to stay away from everyone for 2 days and couldnt breast-feed for at least a week, possibly more. It is nasty stuff to ut in your body so you definitely want to be 100% sure about it.

Soontobe6 - I'd definately get a second opinion if I were you, if your a antibodies are low I'd be questioning your diagnosis,especially before undergoing very invasive testing.  I was hyperthyroid and had low antibodies so graves was instantly discounted.

I am now having blood tests monthly for about 6 months to check everything stays stable.  I was told there's a 30% chance of recurrence if I have another baby.

Good luck op, hope it all settles down soon.

#11 soontob6

Posted 31 December 2012 - 02:40 PM

QUOTE (Fossy @ 06/12/2012, 06:11 PM) <{POST_SNAPBACK}>
I had post partum Thyroiditis after I had my son, he is just 12 months and my levels are stable, finally! I went hyper to hypo to hyper to hypo, so it's been fun!

Definitely get a referral to an endo, a reproductive endocrinologist is best if you can find one, if you're on Melbourne I can recommend a great one.

I, like emm79, was told they won't do anything before 12 months. The radioisotope treatment wasn't something I was willing to do as ppt is usually transient. Also check with your doctor as I was told I'd have to stay away from everyone for 2 days and couldnt breast-feed for at least a week, possibly more. It is nasty stuff to ut in your body so you definitely want to be 100% sure about it.

Soontobe6 - I'd definately get a second opinion if I were you, if your a antibodies are low I'd be questioning your diagnosis,especially before undergoing very invasive testing. I was hyperthyroid and had low antibodies so graves was instantly discounted.

I am now having blood tests monthly for about 6 months to check everything stays stable. I was told there's a 30% chance of recurrence if I have another baby.

Good luck op, hope it all settles down soon.


Thanks, so, what were you diagnosed with?  I have been referred to an endo but can't get in until end of feb.

my gp rang while i was with her as she didn't know what doses etc as I was bf.  She read out my results but when she got off the phone she just kept talking about Graves.
I had another bt done last week and go the the gp on wednesday for the results.  But this morning the nurse rang and said the dr (my original one is on hols) asked to call me to make sure I come in for my follow up on wed as there were abnormalities in my bt.  I told the nurse my history and she said theres nothing to worry about but it did pick up on a small abnormality with the enzymes in my liver??  So, of course I'm worrying, I mean, she wouldn't exactly say, yes you should worry, I'll see you on wednesday would she?!




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