Just been diagnosed with Graves

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Hi Everyone...

I have just found this wonderful site

I have jusy heard the news that Ive got Graves ...I've never heard of this illness before, so Im feeling really low right now...Ive been feeling poorly for years , moved to a new area and found a wonderful doctor who referred me to the hospital ..I feel really angry , as my old doctor put everything down to depression , so I've assumed ive had this for years..

Now I have to make a decission about treatment...im so confused after reading all your comments, please help I dont want to make the wrong choice...

Also has any of you suffered with Vit D dificiancy as Ive have that too ..x

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13 Replies

  • Posted

    Hi Kat, sorry about the bad news but at least you now know why you've been feeling so unwell for so long..  I don't have Graves; just my thyroid levels usually are a bit high so have lost a heap of weight because of the shakes, stressed/anxious and I'm always feeling extremely fatigued..

    I also have chronic depresse as well as SAD, so my GP prescribes me vitamin D (Cholecalciferol), I take a table once a month and I find it very helpful to lift my mood, especially in the dark winter months when I don't got enough sunlight....

    Talk with your Dr Kat and he may try you on Cholecalciferol as he sounds like a clever Dr, and see if it lifts your mood..

    All the best - Mike

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    • Posted

      Hello Mike, thank you for the advice , I am taking Vit D, hopefull they will help a little.

      I have just got the news so its all a bit overwhelming right now, I have a few weeks before making a decision to which treatment to go ahead with ...

      All the best to you too, hope you feel better real soon wink 

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  • Posted

    Hi Kat63

    now you've been referred to hospital things will start to improve and your endocrinologist will put you on medication first of all so I doubt you will be rushed into makign a hasty decision about definative treatment.  I ahve been on carbimazole for over 12 months now - I have 6 weekly blood tests to see if the does is right and soon I will have to decide between having surgery or RAI.  Like you I had been poorly a very long time before I was finally diagnosed,  I have since changed GP.  This is horrible but as Mike1959 says at least now you know what has been happening to you.  Hope you are soon on the road to recovery

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    • Posted

      Hiya.....do you think you will opt for the RAI or surgery ...some of the comments are saying to try Acetyl-L-Carnitine? they are saying it really helps ..wink
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  • Posted

    Hello Kat,

    Sorry to hear you've been diagnosed with Graves.  I've got Graves - was diagnosed with it in 2010 and was put on 'block and replace' for 18 months, after which I was fine for a couple of years.  Unfortunately, due to a lot of stress and I also blame my sudden intake of aspartame, it flared up again last year, so, at my own choice, I am back on 'block and replace' as I don't like the idea of swallowing radioactive iodine or surgery.  Well, it might still come to that - eventually.  My vitamin D levels are exceptionally good, but stress is my big factor.  It is not an easy diease to deal with, luckily, my eyes haven't been too bad.  You will need to see an endocrinologist to get further treatment and hopefully you will be feeling better soon.  Let us know, what treatment you're getting and all the best,

    Stefania

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    • Posted

      Hello Stefania 

      Im sorry to hear its flared up again ,  I too am scared of the treaments there seems to be a lot of people saying they have had problems after ...I have seen a endocrinologist and she has told me the only option is to treat it with the  radioactive iodine or surgery, but  reading what you have all said here im not making any hasty decisions ...

      please let me know how your doing too ...all the best 

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  • Posted

    Hi Kat

    I think all Graves patients are deficient in Vitamin D and Carnitine, an amino acid that is lost from the muscles thru urination in patients who have hyperthyroidism.  The medical profession is not that aware of this fact because their focus has been in trying to normalize the excess thyroid hormones that this disease produces.  So your doctor will probably not know this or endorse your taking supplemental L-Carnitine.  The focus of the medical profession is lowering your excess thyroid hormones by three different ways:  1)  giving you medication that blocks it; 2) Giving radiation to the thyroid that destroys it and then giving you supplemental thryoid hormones; or 3) surgery to remove part or all of your thyroid and giving you thyroid hormone replacement.  Most docs will strongly lean toward the latter two, some after giving a trial of the meds.  The problem with all of these treatments, is they are not addressing the cause of the illness, namely your immune system attacking your thyroid.  If you have the latter two treatments, what part of your body will your immune system next attack?  You can learn a lot about this disease by Googling Graves disease youtube and you will see a lot of presentations explaining things.  I was diagnosed with Graves in 2007 and was given the drug Methimazole (Carbimazole in the UK) at a dose of 10 mg to block my thyroid hormones.  There are three thyroid blood tests given to evaluate thyroid hormone function; namely Thyroid Stimulating Hormone (TSH), Free T3 and Free T4.  My FT3 and FT4 immediately normalized with the meds but my TSH was less than 0.01, not even on the scale.  I remained that way for 2 years and then read about the study that showed L-Carnitine benefitted hyperthyroid patients.  I then took 500 mg of Regular L-Carnitine and my TSH went from less than 0.01 to 0.05.  Then I tried Acetyl-L-Carnitine, 1000 mg and my TSH shot up to 0.70, within the normal range.  I felt better physically as well.  So if you want the best recovery, you need to pay attention to your diet (avoid sugar and aspartame in foods, many patients do better avoiding gluten-containing foods). add Vitamin D and L-Carnitine or Acetyl-L-Carnitine taken along with your meds and adjusted according to your follow up blood tests, reduce stress in your life.  Many patients also take naturopathic herbs like Bugleweed and Melissa to experience more calming of their nerves.  Hope this is helpful to you.

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    • Posted

      Linda thank you so much for all the info ..its really helped me understand ,,I will defo think  before trying  radioactive iodine or surgery....stress is a  huge factor in my life and known since a very bad experience a few years back Ive not been right, Ive gradually become very unwell .I will talk to my doctor Thank you so much for taking the time to explain in detail ...wink

       

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  • Posted

    Kat I need to add since adding Acetyl-L-Carnitine to my meds, I was able to lower my methimazole dose to the current 2.5 mg and my antibodies that were attacking my thyroid have now normalized.  My last blood tests showed all values within the normal range and I feel fine.  You need to do your own research and come to your own decision about the course you want to take.
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    • Posted

      Hello Linda Acetyl-L-Carnitine  is this a precribe drug or can you buy it off the shelf?...IThank you for the advice ..wink?
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    • Posted

      Acetyl-L-Carnitine is available in Health Food Stores or if they don't have it, you can ask them to order it for you.  Here in Canada, it is available behind the counter in Health Food stores
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  • Posted

    Hi Kat

    I'm awaiting full diagnosis but the specialist is convinced I have it because of the extra eye conditions and the very high pulse rate that kicked in 3 months ago.

    I had a partial thyroidectomy 20 years ago and am incensed that this wasn't picked up then because I have had the symptoms all along these years and terrible anxiety because of tremors which I thought were caused by anxiety, because that's what all my doctors have told me.

    Anyway, to cut a long story short I'm going to have the whole thing removed as soon as I'm able.  

    The specialist says there's only a 50/50 chance of the radioactive pill working and even if you're in the good 50 you may still need medication.

    It takes a while to see if it works properly and even then the likelihood is that you return to all the symptoms you've had before, waiting again for another diagnosis.

    I just want to get it out of the way, it's been torture for 20 years and I don't want to face it again - I'd rather just have the op, pop a pill and know that I'm going to have energy and be stress free because I know that those symptoms of stress are not who I am.

    I wish you all the best and advise to think very carefully about that radioactive pill. Personally I think it will in all likelihood just hit the pause button.

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