Hyperthyroidism - endochrinologist appointment

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Hello,

I'm 22 years old. I was diagnosed in November with an overactive thyroid/hyperthyroidism.

Lab results - T3 19.7 (HIGH), TSH <0.01 (LOW) and T4 40.4 (HIGH).

Since my diagnosis I am taking Carbimazole and propranalol every day.

I have my first endochrinologist appointment next week and am not really sure what to expect. I am at this point just so sick of being so constrantly exhausted with bad joints and a lack of concerntration which is impacting my work. I have not really mentioned this in work and am just trying to get on but I just don't feel like myself. I just want answers / this to be sorted.

I am having a scan on my throat and on my head (due my severe headaches). This is all I know that is planned.

Can anyone please advise me how their first specialist appointment went? Am I likely to have any answers after this first consultation?

Many thanks,

Billie

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8 Replies

  • Posted

    Hi Billie I was in a same boat last year diagnosed with overactive thyroid ..its good that u are taking carbimazole and propranolol when u go to see the endo they will physically check ur thyroid too whether it has enlarged or not but at the same time ask them to check the thyroid antibodies for u to find out what is the cause for ur hyperthroidisom bcs I had lots of symptoms and I had mild thyroid eye disease too which has messed up my vision I had really bad throbbing headaches too they did MRI of my head neck and ear was all fine thank God has anyone else in ur family got thyroid problem ?don't worry u will be fine we are all still fighting once u seen by the specialist then update us on this forum there are some really knowledge able people who will help u with this ....

    Regards .....samy

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  • Posted

    Hi Billie.

    At my first appt with my endo, she explained to me my options for treatment (surgery, radioiodine and anti-thyroid meds) I chose meds. She also ordered more lab work for antibodies to confirm whether I was suffering from thyroiditis (temporary) or if i had Graves.

    If you choose meds, I'd recommend to ask for a baseline lab work done on liver enzymes and complete blood count PRIOR to starting meds so you'll know if the meds have any side effects.

    within a few weeks of being on meds, most of my symptoms went away (including headaches). Make sure your endo sees you again sooner than later so they can keep a closer eye on your blood work.

    Good luck!

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  • Posted

    Oops sorry, ignore my response I just re-read and see that you're already on anti-thyroid meds since November.

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  • Posted

    What dosage of carbimazole and Propranolol are you on?  There is a lot you can do to optimize your recovery that your doctors are not trained in.  For myself, I found that a combination of medical treatment plus specific supplements helped me restore my thyroid health and normalize ALL my lab tests.  
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  • Posted

    Hallo there,

    I am sorry to hear that you are still feeling very below par, that takes so much energy, pretending to be fine at work, joint pain, headaches and brain fog. Not great and I sympathise.

    I saw my endocrinologist within 6 days of getting my blood work done, including the antibodies test (yep, clear on that that I have Grave's disease).

    She started me on Carbimazole (20mg x 2 day) and told me to expect to feel much better within a couple of weeks. Indeed that was the case. In my case it was more severe muscular weakness and shaking, that alerted me to not being well. Those symptoms are gone now, and I feel like Popeye walking upstairs, super strong and walking tall. That is wonderful.

    I was then told I had a 50% chance of spontaneous remission if I took my antithyroid meds over 18 months to 2 years. If it recurred I could then choose RAI (no way, no way!) or surgery. As I teach, there is a small chance my vocal chords would get damaged and instead I'd be whispery. Again, no way, no way. End of career.

    The endo made it all seem pretty straightforward. Take pills, end disease. However it was only once I got to explore this forum and get the advice of people far more experienced and knowledgeable than me, that I started to realise I had options the endo never even mentioned. I could improve my diet and add supplements to get my TSH and thyroid hormones normalised, I could try to reverse those nasty antibodies that are causing these issues. Having garnered a bit of knowledge, I feel more focused, optimistic and it feels great to have clear goals.

    Just bumped into my ex-GP today. He asked how I was. Grave's disease, says I. Meds will fix it, says he. I looked him straight in the eye and said that the meds will help with my symptoms but I intend to send my antibodies into remission through careful diet, supplements and serious stress management. I said that to practice, so when I see my endo again in two weeks, I'll be so articulate and well prepared, that she knows I am there to get better, not to just reduce syptoms.

    So wishing you an excellent time with your endo, and most of all, I hope you feel way better soon.

    Report
  • Posted

    Hallo there,

    I am sorry to hear that you are still feeling very below par, that takes so much energy, pretending to be fine at work, joint pain, headaches and brain fog. Not great and I sympathise.

    I saw my endocrinologist within 6 days of getting my blood work done, including the antibodies test (yep, clear on that that I have Grave's disease).

    She started me on Carbimazole (20mg x 2 day) and told me to expect to feel much better within a couple of weeks. Indeed that was the case. In my case it was more severe muscular weakness and shaking, that alerted me to not being well. Those symptoms are gone now, and I feel like Popeye walking upstairs, super strong and walking tall. That is wonderful.

    I was then told I had a 50% chance of spontaneous remission if I took my antithyroid meds over 18 months to 2 years. If it recurred I could then choose RAI (no way, no way!) or surgery. As I teach, there is a small chance my vocal chords would get damaged and instead I'd be whispery. Again, no way, no way. End of career.

    The endo made it all seem pretty straightforward. Take pills, end disease. However it was only once I got to explore this forum and get the advice of people far more experienced and knowledgeable than me, that I started to realise I had options the endo never even mentioned. I could improve my diet and add supplements to get my TSH and thyroid hormones normalised, I could try to reverse those nasty antibodies that are causing these issues. Having garnered a bit of knowledge, I feel more focused, optimistic and it feels great to have clear goals.

    Just bumped into my ex-GP today. He asked how I was. Grave's disease, says I. Meds will fix it, says he. I looked him straight in the eye and said that the meds will help with my symptoms but I intend to send my antibodies into remission through careful diet, supplements and serious stress management. I said that to practice, so when I see my endo again in two weeks, I'll be so articulate and well prepared, that she knows I am there to get better, not to just reduce syptoms.

    So wishing you an excellent time with your endo, and most of all, I hope you feel way better soon.

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  • Posted

    Thank you for all of your responses it is all very helpful.

    I'm on 20mg carbimazole per day and 40mg propranalol a day.

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  • Posted

    Just another thing, I am not sure whether this is at all related, but I have recently been finding I have a rash-like redness that appears from time to time across my eyelids and the surrounding area of my eyes.

    I just wondered whether this is something anyone elese has experienced with hyperthyroidism or the medication I am taking. I am trying to establish whether there is a connection to my daignosis/treatment or whether there is no correlation.

    (picture is not the clearest -sorry)

    Thanks,

    Billie

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