I have been diagnosed with graves disease, on Carbimazole. Been having regular blood tests, my test are all over the place. I am constantly exhausted and feel very low mood. I am due back to see consultant in September. I am fed up with the block/replace or whatever it's called. My sister had overactive thyroid in her 20's, I am late 50's , just want this awful illness to end. It is affecting all aspects of my life, I find myself becoming easily stressed , doesn't help feeling exhausted, so fed up. It is my thyroid making me feel so low, aching limbs is a big problem as well.
Thanx is
Written by
marney88
To view profiles and participate in discussions please or .
Not surprised you are exhausted and stressed. I felt so ill. I had horrendous palpitations all the time and that woke me up every night. I slept most of the day both before I got a decent doctor - one actually told me I was needing my holiday! Boy was I angry at that. Actually anger featured a lot in my symptoms, I would say I was pretty volatile and intolerant before I was treated.
Fortunately I finally met a decent doctor and within two day was diagnosed and started on carbimazole. I started on 20mcg a day which hadn’t worked as well as it should have done after four weeks because I then got a letter from my endo telling me to increase to 40mcg a day which I did for another two months and when I finally saw the endo exactly three months after I was diagnosed and started on anti thyroid drugs I was hypo which wasn’t much fun either.
I found block and replace very good although the first time I needed an increase in levo I had hyper symptoms again but I was told by someone on here that that was normal and sure enough once my levo was increased things went back to being ok. Same thing happened next time I needed an increase in levo and I was able to get my GP to increase the levo for me rather than have to wait to see my endo.
When I started carbimazole my pharmacist came out to tell me to take vitamin C along with it so I always took 1000mcg slow release vitamin C with zinc. I don’t know if that’s why I felt well or not but it could be worth trying.
I was in my mid sixties when my Graves started so I was fortunate that my kids had left home and I could do or ignore housework as I felt fit. My husband took over shopping and cooking while I just slept and rested. I. Only did things I wanted to do - quite selfish I know - I didn’t do anything that I or anyone else felt I ‘should’ do.
You are really very ill when you have Graves’ disease. I didn’t look it, I lost masses of weight and looked better than I had for ages - on the outside though. Inside I was a total mess. Heart pounding, couldn’t sleep, couldn’t walk far and long distance walking was my hobby. Couldn’t get up off the ground because my thigh muscles were so wasted.
If I relapse I know I most definitely want to be on block and replace again as I absolutely don’t want to be given radioactive iodine and (to me) block and replace seems easier to do than carbimazole being titration down but that could be because it is all I’ve known.
When I started on B&R the endo I saw said my hospital uses the ‘quick way’ which was B&R and it would take a year to get sorted. I remember thinking ‘A year? Quick?’ But it took exactly a year and the morning after that check up I stopped both the carbimazole and the levo and I’ve been in remission since.
I was scheduled to work at one point just after I started my block and replace and in the end I cancelled all the work I had been booked for as I felt that I might be unreliable but I booked up again a few months later and had no problem at all.
You really do have to rest as much as you can. Eat well, I upped my game on theeating stakes - ate lots of fish - at least twice a week, some fruit and lots of vegetables, especially green leafy veg, I totally gave up my Mcdonalds habit and fizzy drinks. I’m not sure if it helped but I felt it must be good for me.
Make sure your vitamin D and B12, ferritin and folate are well up in their ranges - even if you have to pay for the tests yourself like I do. GPs often say your results are fine when what they mean is they are within range but at the very bottom of the range. Get and keep copies of all your blood test results with their lab ranges. Read as much as you can about Graves and be proactive about your treatment. Be part of your treatment rather than just having it done to you.
Gosh I sound militant don’t I! You will get there in the end but recovering from Graves isn’t going to happen quickly or suddenly. It will happen though.
I was diagnosed with an overactive thyroid in September 2017. I to have Graves disease and on Carbimazole which I have been taking for a year now. My medication has been reduced and increased a couple of times due to side effects. I am now down to 20mg and bloods are good and generally most of my major symptoms have gone but I do still have aches and pains especially in my back, neck and sholders and also feel I have no energy for exercising. I see my Endo consultant in September again. I will be asking him if these side effects are more likely to be coming from the medication rather than the thyroid problem.
I feel your frustration as its a year on for me and still not back at work, I have hashis too, I'm on carbi on titration doses and had all them aches and pains and muscles that have turned to jelly!! Palps, breathless, tremoring, panic attacks my list is as long as my leg never mind my arm!!
Things will get better, I'm better than I was in some ways, it helps to know there are lots of us out there, you're not alone lady🌟🌟
Thanks guys, I feel a little better knowing I'm not alone. I know I have vitamin D defintiancy, I did ask on my last bloods for antibodies and vit D to be tested. When phoned for results was just told satisfactory and wait to see consultant ! I have had to go back to work as single parent to a 15 year old, I also work with severley, challenging autistic people . I get very overwhelmed and tearful, so not me as usually social butterfly ! Like one of you have said, I am constantly being told I look really well ! Or you feeling better, never seen you look so well ! I wish I felt as good. I will pop into my doctors and get copies of my bloods and let you all know the results. A year ? Feel so frustrated, last weekend I just wanted it all to end (not suicide) just wake up feeling fresh. Again thanks it helps to know ppl understand and I'm not walloing in self pity, it's real ! 😬 I will also look into all the advice you have given me ✌️
Gosh (((huge hugs ))) to you for keeping going. Having been there I know how tough things are at times. Especially as you are a single parent holding down a job. I always really feel for younger people and people with jobs they have to go to as well as kids to look after. You are definitely not wallowing in self pity. All of us who have or have had Graves know how you feel.
Get those results, you might find satisfactory has a different meaning for you and your consultant.
I used to feel so tired I had to fight the urge to lie down on the floor in the middle of Tesco and just let people set over me. Can you imagine it? W8nder if they would have walked round or over the top of me?
Meanwhile here are a couple of articles that might help your friends and colleagues realise what’s happening to you.
Keep going, keep coming on here, you will get better even if it doesn’t feel like it
Im so sorry to hear your'e feeling so unwell. I too had an overactive thyroid, But in my late 40s. After it recurring after a couple of years of being on block and replace I opted to have a total thyroidectomy in my mid fifties. I think the older you are the more bieng, overactive affects the heart bones and kidneys. I felt very very ill towards the end. The good news is that I am feeling healthier and stronger now and I am so glad I made that decision. The one thing that has changed though is my body shape. After being between 7 stone when i was at my weakest with the disease and 8stone when I was on carbimazol. I am now 10stone 7LBS. But i do feel well so this is a small price to pay. I even climbed Mount Snowdon in Wales this June!!! Whatever you decide to do. I hope your outcome is a happy one .
I would just like to add, that if this is your first time of having thyroid problems..then after 18 months of being on the block and replace you could go into remission, and the thyroid function normally. so please wait and see how you are at the end of your course. Hope this helps you Marney.
I to suffered for years with hyper/graves. For 21 years. When i started going thru menopause that put me in remission. I have to say i feel better but i have high blood pressure which is not fun i teka 350 mgs everyday. I will keep u in my prayers!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Diagnosed overactive thyroid
Thyroid levels
Overactive Thyroid
Supplements for thyroid conditions 
Recent thyroid results - improvement on paper, but still feel unwell :(
