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Hello from Down Under


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#1 Jenny

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Posted 01 February 2010 - 08:11 AM

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Hi there,

 

My name is Jenny, I'm a 53 year old mum of 4 grown boys and we live in Queensland Australia. I was diagnosed with GD about 4 years ago, though I do believe due to symtoms, that I have had it for a lot longer than that.
Frustrated at the lack of information, I went searching on the internet and that's when I found this forum. There is so much in here that I have never been told and I'm only just getting into the reading.
I look forward to getting to know everyone, it is such a relief to know that I am not alone and what I am going through is not in my head.
...cheers to all




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#2 Jeffrey Roberts

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Posted 01 February 2010 - 09:46 AM

Welcome Jenny!

 

Thank you for your lovely message to me. Would you mind if I shared it with the everyone?

 

I am the publisher of the website. The members are truly the people you should be thanking for gathering such insightful information about Graves'.

 

We're so glad you found the group.

 

Jeff



#3 SusieQ

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Posted 01 February 2010 - 12:52 PM

Hi Jenny,

 

Welcome to the group. You have found a great place for Graves disease. Feel free to ask questions, tell us a little bit about your treatment plan and such.

 

We used to have quite a few members in Australia. I seem to remember most of them having competent doctors and their road to recovery was a good partnership with the doctors too. It is my hope you are one the lucky ones too. There were many times years ago when I was still struggling to find a doctor who knew what he/she was doing and I thought that perhaps moving to AU would simply be easier for me seeing as they seemed to have doctors with a brain down there.

 

Susie



#4 Rowdy

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Posted 01 February 2010 - 03:57 PM

Hi Jenny,
Welcome to the board.You'll find a ton of helpful information here.If you have questions you should post them in the discussion section,which I think is located at the very top of the board when you enter.
This is the lounge section for off topic stuff and your question could get unanswered if it isn't noticed here.
Glad you found us!



#5 Jenny

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Posted 01 February 2010 - 04:10 PM

Hi Jeff and Susie,

 

Thank you for your replies. I don't mind if you share my message Jeff, feel free to do so.

 

My doctor has me on a medication called Neo-Mercazole, I have not yet seen it mentioned in this site but as it has been suggested, some medications may have different names. The idea of Radio active treatment has been put to me but the specialist does not push it, he is leaving it entirely up to me to decide and has said if I wish to continue and hope for the best (remission) then he is happy to continue the treatment as is.
However, there has never been any discussions with him regarding diet/lifestyle/exercise and joining this site is certainly opening my eyes.

 

I am so far lucky that I do not have the eye problem, but I do suffer with fatigue, insomnia, brain fog,and muscle weakness.

 

I have recently had discussions with a Naturopath and am seriously considering visiting one as well as they do seem to look for the cause of illnesses rather than symptoms and I have had a lot of success in the past with them. As I said to my doctor (and he agreed) taking out the thyroid is removing a target, it is not the problem. That is why I have so far resisted radio active treatment or surgery (which he says is rare).

 

Thanks again and I look forward to learning more and future conversations.

 

Jen



#6 SusieQ

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Posted 01 February 2010 - 04:21 PM

Oh Jenny,

 

It warms my heart to hear about your dr. He sounds like a good one so far. The medication you mention is simply the AU version of what we call Tapozole/MMI here in the states. UK calls it something else. All three are pretty much the same concoction. Work by the same means.

 

Diet, supplements, exercise are all important things. However, we have special needs with Graves such trying to avoid too much iodine without going depraved. Avoiding seafood, seaweed, asparagus, aspartame, msg, processed foods, stress will help your medication work a lot better get you closer to remission or at the least, stabilization on your medication.

 

I want to suggest that you start a new thread in the Discussion Forum though. Our board recently underwent some big changes and we are all still getting used to the new look and feel. But it seems that this area--The Lounge is geared for Off Topic posts. This being the case, it could be that many of our members will be spending more time in the Discussion Forum. You might get overlooked in this section. Just introduce yourself and you can also copy and paste the posts here in this thread into your new thread in Discussions.

 

You will be learning about thyroid tests, getting baseline blood work for liver functions and whatnot and how not to get overmedicated on your antithyroid medication (ATD), which is all to common for us. However, the AU doctors seem to be the most on the ball and sympathetic to the troubles of the Grave patient. I have faith you will be taken good care of.

 

Susie



#7 SusieQ

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Posted 01 February 2010 - 04:23 PM

Jenny,

 

Click here http://www.livingwit...oid-discussion/

 

This is the link to the Discussions Forum. :)



#8 Christine

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Posted 01 February 2010 - 04:27 PM

Hi Jenny -

 

Yes, welcome to the group! I agree with Rowdy's suggestion (HI Rowdy!!) to ask questions on the main discussion board. The Lounge is new and it's mostly just a place to chat about whatever. We're all just getting used to the "remodeling."

 

Glad you have a doctor who isn't pushing you into a permanent treatment. I'm on Tapazole, which is the US/Canadian version of the antithyroid drug you're taking, and have taken it for over 30 years. In fact, even though I'm in California (USA), I buy my Tapazole from Canada.

 

You'll get some great answers here. Just ask away.

 

Best Wishes,
Chris



#9 Rowdy

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Posted 01 February 2010 - 06:24 PM

HI CHRIS !



#10 PinkDiamond9

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Posted 01 February 2011 - 02:43 AM

Hi Jeff and Susie,

 

Thank you for your replies. I don't mind if you share my message Jeff, feel free to do so.

 

My doctor has me on a medication called Neo-Mercazole, I have not yet seen it mentioned in this site but as it has been suggested, some medications may have different names. The idea of Radio active treatment has been put to me but the specialist does not push it, he is leaving it entirely up to me to decide and has said if I wish to continue and hope for the best (remission) then he is happy to continue the treatment as is.
However, there has never been any discussions with him regarding diet/lifestyle/exercise and joining this site is certainly opening my eyes.

 

I am so far lucky that I do not have the eye problem, but I do suffer with fatigue, insomnia, brain fog,and muscle weakness.

 

I have recently had discussions with a Naturopath and am seriously considering visiting one as well as they do seem to look for the cause of illnesses rather than symptoms and I have had a lot of success in the past with them. As I said to my doctor (and he agreed) taking out the thyroid is removing a target, it is not the problem. That is why I have so far resisted radio active treatment or surgery (which he says is rare).

 

Thanks again and I look forward to learning more and future conversations.

 

Jen



#11 PinkDiamond9

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Posted 01 February 2011 - 02:52 AM

Hi Jenny,

 

Like you, I am from Down Under and only found out recently that I have Graves disease. I happened to hear a radio broadcast on 2HD radio (I am from the Newcastle area) during which the DJ interviewed Toni Childs (she sang "Take my breath away" in the movie "Top Gun"). She was diagnosed with Graves disease, and apart from moving to Hawaii, she also sees a naturopath, since the drugs mask the symptoms (she said) but didn't pinpoint the cause.

 

I have had a bit of muscle weakness (though not to a great extent, frequent bowel movements and anaemia, which are now improving. I've had brain fog too - and a bit of insomnia - for many years in fact. Now I'm on Neo-Mercazole, like you -- and enjoying starting to feel normal again.

 

If anyone has tips on how to beat insomnia, I'd love to hear it.

 

All the best to you!

 

Susan



#12 shellycullis

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Posted 10 August 2011 - 06:03 PM

Hello, i am also from Australia, Victoria were its nice and cold. Anyway i have been put on the same medication about 6 -8 weeks ago, i was taking 4 tablets daily but my doctor dropped it to 3 in my last visit. My Q is, how long before you start to feel better, i have constant pain in my throat and headaches that don't seem to go away with ibuprofen, panadol. i also have the sore muscles, you feel like you have run a Marathon in your sleep. brain fog ( or my husband would say normal) and very cranky and stressed lately. I try to meditate but get irritated to easy, i used to be able to do this easily. Any advice please
Shelly



#13 Jenny

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Posted 29 July 2012 - 03:14 AM

Hello, i am also from Australia, Victoria were its nice and cold. Anyway i have been put on the same medication about 6 -8 weeks ago, i was taking 4 tablets daily but my doctor dropped it to 3 in my last visit. My Q is, how long before you start to feel better, i have constant pain in my throat and headaches that don't seem to go away with ibuprofen, panadol. i also have the sore muscles, you feel like you have run a Marathon in your sleep. brain fog ( or my husband would say normal) and very cranky and stressed lately. I try to meditate but get irritated to easy, i used to be able to do this easily. Any advice please
Shelly

 

Hi there, I haven't been in here for such a long time. I think I got myself into a rut and now that I'm back working seems little time is available. Not much has changed for me since my last post as far as the Graves goes, still on Neo-Mercazole though only one tablet a day. I ditched my specialist because even though he never pushed surgery or radio-active iodine treatment, to me he seems to have lost the desire to really help. He would read my blood test results, advise on medication dosage then "thank you very much see you next time"rather abrupt and difficult to get a conversation out of. Then he kept upping his fees and for me at the time, became unaffordable. I am now going to the public clinic at the Royal Brisbane Hospital and found them to be far more interested, thorough and helpful. In all the years I had been seeing the private specialist (6 in total) he never once mentioned a bone density test yet it was the first thing they ordered at the public clinic. Just goes to show, money doesn't always buy the best. I have not yet been to a natural therapist but that was because I couldn't afford one. Now I am working I am searching around and am considering between a Naturopath and a Chinese Herbalist (thinking the latter depending on cost). I like that they search for the cause rather than treat the symptom. Let's face it, Graves attacks the thyroid, the thyroid is not the initial problem so to remove it or blast it with radio-active iodine isn't dealing with the problem at all and has the potential to cause other problems. I hope after all this time you are feeling better. What part of Vic are you in? I came from there originally. Cheers



#14 Jenny

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Posted 29 July 2012 - 03:21 AM

Hi Jenny,

 

Like you, I am from Down Under and only found out recently that I have Graves disease. I happened to hear a radio broadcast on 2HD radio (I am from the Newcastle area) during which the DJ interviewed Toni Childs (she sang "Take my breath away" in the movie "Top Gun"). She was diagnosed with Graves disease, and apart from moving to Hawaii, she also sees a naturopath, since the drugs mask the symptoms (she said) but didn't pinpoint the cause.

 

I have had a bit of muscle weakness (though not to a great extent, frequent bowel movements and anaemia, which are now improving. I've had brain fog too - and a bit of insomnia - for many years in fact. Now I'm on Neo-Mercazole, like you -- and enjoying starting to feel normal again.

 

If anyone has tips on how to beat insomnia, I'd love to hear it.

 

All the best to you!

 

Susan

Hi Susan, this is the first time I've been back in here since before your post. I hope you are feeling better, did you find a solution to the insomnia? If so, please share because I still struggle with it. I have brain fog too but with an added disadvantage, I had vestibular neuronitis some time ago which causes vertigo and with a history of ear problems/operations I'm told may never fully recover...oh how lovely! Yes I agree with Toni Childs re natural therapies, am about to head down that path myself. Best of luck and look after yourself, cheers







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