Graves’ disease - me again 😔

[nooneimportant]

I’m so sorry to ask another question 😔 but does anyone else with Graves’ disease feel like their head is in a vice? My periods usually (and always have) only lasted 3-4 days max and I’m now on day 8 of light bleeding, last month it was ten days, I’ve had a headache for ten days which finally brought me to tears just now and I took something for it (I can count on one hand how much pain relief I take in a year - I try hard not to), I ache, just generally, but you know when you lean on your elbow to get up and it just hurts (tender) I’ve still all my other symptoms, a bit constipated, tired (napping through lunch), not hungry, tearful etc etc etc this headache fatigue and blight bleeding is really getting to me now though - is this graves or something else about to take me out??

Blood test on Monday and dreading it’s going to come back high again 😔

[asiatic]

I think from your symptoms and previous posts your blood test ( which hopefully includes fT3 ) will probably be low confirming you are hypo and giving you ammunition to be put on Block and Replace.

[nooneimportant in reply to asiatic]

Thank you - pain relief and a vagus nerve exercise seems to have cleared the headache - 🤞🏼 on Monday x

[Mah43]

Graves is a horrible disease, the worst thing is people don’t really seem to understand what is does to you, I’ve had many people say to me oh it’s just graves 🤬

I’ve been on carbimazole now for about five & half months, I have had many many dose changes, I started off on 10mg, then 15mg then 20mg then 25mg I’m now on 30mg & I’ve been on that for about 6 weeks, I feel a lot better than I did but I’m still a long way from being back to normal or what i say is normal. I’ve was crying multiple times everyday (my husband & work colleagues have had to put up with a lot) I’ve not cried now for a few weeks, my mental health was so bad I didn’t know what to do with myself, mentally I’m now feeling a lot better well most days I am. Tiredness is a big struggle too, I’m still having sleep issues, some nights are dreadful in turn the following day/days are not great. At the moment I can have about four good days then I’m hit by a bad day, I can usually feel it coming on too, it’s just rubbish. I’ve lost a lot of hair & my skin is not great. A really big issue for me as been my weight and appearance, my BMI is 17.1 I am really trying hard to put weight back on but it’s not really happening, I also have terrible muscle wastage, now my bloods & heart rate have improved my Endo nurse thinks my weight should start to improve. I’ve just been trying to do everything I can to make myself feel better, I’ve supplemented for several years I have just had to tweak them slightly.

I don’t know how often you have your bloods tested? I’ve been having mine done every 4 weeks since January, I had my follow up with my Endo nurse last Friday, she said 4 weekly will continue until I’m stable then we can go to 8 weeks. I have seen the Endo consultant once at the beginning of January, he was rubbish, he told me I would start to feel better in 3 weeks 🤣, the only positive thing was that he authorised the Trab test which kept getting rejected by the lab when requested by my GP. All of my follow ups now are with the Endo nurse, I just have to call the number once my bloods are back & she comes back to me to let me know if I need a dose change. I have told her I’m never going to have RAI.

I really hope things improve for you soon xx

[nooneimportant]

Im glad things are starting to improve for you. I think I’m nearly two years into graves and one year on this vile medication and never felt worse - just had enough now and want nature to just take its course. I’m not getting better so I really can’t see the point in being tortured by medics indefinitely 🤷‍♀️ this isn’t living to me

Fingers crossed you get things sorted 🤞🏼