Help please Graves/hyper folks - letter to endocrinologist

I am in the process of writing to my endo and I am wondering if any of you who have been diagnosed hyper or Graves have any suggestions.

Specifically I am wondering if you have had any testing (either NHS or private) that you found useful. I have had the usual bloods and antibodies tests and I have been diagnosed with Graves' Disease due to the presence of thyroid antibodies, combined with elevated T4 and non-existent TSH.

I am wondering if there are any vitamins/mineral levels that might want testing? Any point in any scans or ultrasound exams?

Just wanting to know what to put in my begging bowl. I'd love to hear if you have found any tests/exams that were useful.

P.S. - someone on another site just informed me that the reason there is more discussion of hypothyroidism than hyperthyroidism is because hyperthyroidism is "only temporary". :-)

9 Replies

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  • I don't have Graves but this may give you some information.

    thyroid.about.com/od/thyroi...

  • I have Graves and I'm very pleased to hear that it is temporary. I shall inform my GP and endo at once!!! There is rather an assumption here that everyone is hypo! I don't have anything useful to add to the above but am seeing my doc tomorrow and will ask about vitamin D- there has been some discussion on vitamin D on here.

  • Ain't it grang to hear that Graves' is temporary?

    I am waiting for it to go away - NOW!

    I presume Graves is temporary in the sense that 1) your thyroid burns out and you go hypo and can join the general conversation or 2) you die from the cardiovascular effects

  • Bit harsh surely. Anyone new to reading about Graves' get the proper treatment & you will not die from the effects. I have had cardiovascular effects since I was 13 years old from Graves' and it is one of the most scary symptoms of the disease & reading things like this won't help.

    All tests on my heart show it to be healthy & I also had 15 years in remission from Graves', it's back but I will do my best to stay positive and make sure it's only temporary again.

    I know this is an old thread but still came up in my side bar. I hope you are feeling more positive now x

  • Hey Wiggy, what a beautiful baby! Thanks for posting.Hope ur enjoying good health ....

  • I am a Graves/hyper patient. I had Graves and the hyper thyroid until I had radiation to kill off my thyroid and I am now hypo. I would see a good endo or internest and let them monitor your levels. Good luck!

  • Lol I took med for 3 years mine couldn't be controlled but l stuck it out 3yr and l think l was wrong too cos l haven't been right since l think its had lasting effect on me I.e muscles etc I think l should of let them remove mine early on tbh!

  • Hi also a Graves/Hyper patient.

    I am not surprised that people with hypo/Hashis think that being hyper is only temporary or that they often fail to see that being hyper is far more serious and dangerous. I am sick of people (like my mum and sister who have Hashis) failing to believe how bad it is when they are ok or my mum in law who tells me that all her friends and clients, who are underactive, take a tablet and feel fine. Obviously I am a drama queen.

    Anyhow to your question - ask for your calcium levels, vitamins B12 and D be checked plus your iron levels. Also you could push the boat out and be checked for gluten intolerance and an uptake scan on your neck. Good luck, you will need it!!

  • Well i went to the gp today and had more blood tests (i think we should monitor your bloods more closely) and will find out if I have any vitamin deficiencies next week. I'm definitely low on folic acid and have tablets for that on prescription. Good luck!

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