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graves disease

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#1 soontob6

Posted 30 November 2012 - 11:16 AM

So, last Saturday, I noticed that one of my eyes were bigger than the other and started to freak out abit.  Went to the Dr on Monday and straight away she asked if I had family history of Thyroid problems.  I said no and she said that straight away she could see my thryroid and did a couple of tests - reflexes etc and they seemed to point to overactive thyroid, which made me feel alittle better as I was of course thinking the worst like a tumour rolleyes.gif
Anyway, I went off to get blood tests done and yesterday, after a very anxious wait at the Drs, I was diagnosed with Graves Disease.  But then she said that my level of antibodies was only 88 where as sometimes it can be up in the thousands and that she wasn't 100% sure then ??
But then she called the endocrinoligist (sp) and gave him my results and asked what meds to start on (I'm breastfeeding my 10 mo) and gave me a very low dosage for a month to give me time to wean, and after she got off the phone she didn't say anymore about not being sure so I'm gathering I def do?

does anyone here have Graves Disease?
I'm glad I know what it is now and that it can be treated, and I guess it was pretty good timing as my 10 mo is my fourth and last so I don't have to worry about pregnancy upsetting my levels.
I'd just like others to share their experience?  tia

#2 soontob6

Posted 03 December 2012 - 08:32 PM

Theres got to be someone on here with this condition?? unsure.gif

#3 JKTMum

Posted 03 December 2012 - 09:01 PM

I had Graves about 4 years ago now. Mine manifested in massive loss of weight (was eating well), hair falling out, palpitations and hand tremors, really hyper and lack of sleep. I had a thyroid ultrasound and there was no nodules or swelling, no noticable eye changes either.

I went on the meds for two year, starting off with quite a high dose and then weaning down, but everytime they tried to get me off the meds it would go overactive again. Final option after two years was either to have the thyroid removed or to have Radio Active Iodine. I chose the RAI, which meant I went permanently underactive and now take meds to counteract that (safer healthwise to be underactive rather than overactive). I still have to adjust my meds every so often and have regular bloodtests, but I'm no longer under an Endocrinologist, my GP just handles it all now.

Some people go into remission after having the medication for a number of months and they dont need any further treatment.

Cant say I'm totally happy being underactive, now I really struggle to lose weight (put on about 15kgs in the two years after diagnosis), also struggle with energy levels, but I know that long term its better for my health to be on the underactive meds. I'll be on some form of them for the rest of my life.

The RAI itself wasnt a big deal, swallow a capsule in outpatients and head home (I had the highest dose that could be given as an outpatient, anything higher and I would have had to be admitted and monitored for my radiation level to fall before being allowed to be discharged). For the week after I had to take lots of precautions, couldnt be around my kids at all and pretty much hibernated in my room for 5 days (had to use a separate toilet from everyone else and couldnt prepare food or share any utensils). I passed the time by joining facebook, reading novels and watching a lot of movies on the laptop.

#4 blackmetallic

Posted 03 December 2012 - 09:13 PM

Hi, my XH has Graves Disease (for about 5 years now). He's on PTU which is an older medication. The first one he was on (sorry can't remember what it's called) was ok, but when he stopped taking it his levels went sky high again.
At the moment he's 'weaning' off the PTU to see how he goes without it...apparently sometimes the thyroid 'fixes' itself or something. So far his levels are stable, although on the high side. He has to have blood tests every month or so.
I think the alternative treatment is radiation therapy to remove the thyroid, then Thyroxine tablets for the rest of your life.
He has had issues with food intolerances since being diagnosed, actually that's partly how he was diagnosed, he went to the doctor as he was having issues after eating (pain, bloating, diaroeha (sp?) escpecially from gluten. He still can't eat gluten, and he can't handle fruit, or a lot of lactose. Apparently it's a common side effect of Graves.
He has the bulging eyes, and before being diagnosed was quite skinny, couldn't put on weight, and was really hyperactive - he's naturally pretty hyper anyway so he was pretty full on! Since being medicated though he's 'calmed down' a lot, and put on a bit of weight.
Graves disease can have some pretty serious effects on you, so you should really go and see an endocrinologist and discuss your options. I don't know much about the hormone levels or anything, but feel free to ask me anything - I can ask XH too.

#5 rrt1000

Posted 03 December 2012 - 09:30 PM

I tried to PM you, but it did not work for me. I'm more then happy to talk to you about my experiences if you wanted to try and PM me? original.gif

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