Thyroid

[Joleene1982]

Been diagnosed with graves diease since May las year thyroid results low then high , latest result is free t4 21.1 tsh 0.02 and doctors say this is satisfactory, I feel worse now than ever , puffy eyes , face etc, does this ever settle down

[Joy333]

Hi joleen, it does get better. Are you on carbimazole?

[Joleene1982 in reply to Joy333]

Hi, yes I am on 5mg have been on different amounts for last year, skin s bad, swelling is bad , I think this makes me stress more which maybe aggravates the symptoms, do my levels appear normal , I really don't understand why I don't feel better

[Joy333 in reply to Joleene1982]

Hi joleene, do you have a reference range for your t4 (it's in brackets)? Don't worry too much about your tsh just now, it's always the last thing to budge.

You're t4 might be too high for you and not what your personal ideal level should be. From my own experience I always feel better with my t4 sitting at 14.7 ish and can feel dreadful if it's outwith this. I too have graves.

[Joleene1982 in reply to Joy333]

My ref range is 12.0-22.0 so I know I am below it but still the symptoms don't settle, does this illness ever go away or do you take carbimazole for life

[DoubleM]

I had a lot of side affects on carbimazole and have had completely suppressed TSH for 7 years. I was changed over to propylthiroluracil (sp) and have less symptoms. Like any other long term illness you'll have good days and bad days, but if you're medicated properly there'll more good than bad x

[Jacquid]

It might be worth checking if your vit and mineral levels are ok, this is what the thyroid needs to work properly, vit D, ferritin, folate and B12 need to be at decent levels, doing some research on the site will tell you how much. You had tests for those?

I'm at the other end of Graves, now need NDT but it has taken a long time to stabilize on it, mainly I think getting those basic levels right. I've had a bit of swelling and found that ferritin levels need to be good to resolve this.

It's a long haul but you will get there x

[Joleene1982 in reply to Jacquid]

It's very hard to get doctors to take you seriously , a bit of puffiness isn't a major issue I ve been told but it really makes my anxiety feel worse, do you recommend a vit tablet , I would say that my levels aren't so good as in pregnancy iron was always very low, it's very hard to deal with some symptoms, my levels have never been very overactive but my anxiety and pulse rate during pregnancy are what triggered the doc to check my levels, I feel that I've became worse on medication than I ever was without but I would be afraid to stop the carbimazole in case my eye got worse , even though I notice more changes to my eye all the time, I think the anxiety about my facial appearance really is making me unwell , I just don't seem to get any good advice or consistency with my doctors

[Arab in reply to Joleene1982]

Hi Joleene,

I have Graves, although my readings are good at the moment.

I made sure that I supplemented with D3, Vit C and Zinc, Magnesium, and most importantly for you and me as well, Selenium. My left eye was puffy and sore, and eventually I saw a specialist who diagnosed mild Thyroid Eye Disease. He told me that although some cases are treated with steroids, taking 200mg of selenium daily has shown to be just as effective. It certainly has helped me. Maybe this is something you could try.

Hope you start to improve soon.

Arab. 😊

[Joleene1982]

Hi thanks for response, I have had this puffy eyes symptoms for nearly a year sometimes it goes then flares up again, it doesn't co-incide with my thyroid levels so I don't know what triggers the symptoms , I will try the supplements and pray it helps