having spent 2 years being told by an Endo that although I was Hyperthyroid I actually had Hashimotos Disease. I was put on PTU but only had them for 18 weeks after which the Endo stopped them and told me I was in remission and discharged from the hospital. That was April 2011 by December 2011 I was so ill but doctor treated me for a virus for 4 weeks, she then did a blood test and told me I was overactive. I seen an Endo in February 2012, who said I should have the RAI treatment but I declined unfortunately I couldn’t get another appointment with her until the end of June. In the meantime the GP was upping my medication everytime I had a blood test until I could just about get out of bed. I asked to see another Endo which I did today, he has told me I have Graves disease and that the only treatment for it is RAI or surgery that medication won’t work. When I refused either he agreed to monitor blood tests for 18 weeks and adjust my medication by phone. He has discharged me from the hospital and will only see me if I agree to treatment.

All of this has left me feeling very confused and then I found your blog and realised I was not alone. There are so many support groups if you are Hypo but and they mention Hyper occasionally. Reading this and everyones responses has made me realise I am not alone. Thank you and everyone for your stories they have helped me I don’t feel so alone noe.

as you’ll have gathered headaches were my first and only symptom.

I’ve seen one paper suggesting 60% of patients experience headaches before treatment, but I guess it depends how significant it is compared to other symptoms. I now think I may have had sinus pain rather than a headache.

The antibody tests come in various types. Whilst little is 100% certain, if you have positive TSI, or TRAb test (antibodies that cause Graves’) and hyperthyroidism I think it is reasonable to say you have Graves’ disease.

I’ve met one person who had these results and also had another complaint causing an overactive thyroid, and I’ve heard of the odd thyroid cancer patient with similar. But what I believe is happening there is that having Graves’ doesn’t exclude having other thyroid problems, and indeed there is evidence it may make them more common.

In the UK it is more common to measure TPO antibodies, which are a marker for autoimmune thyroid disease, but may not distinguish Graves’ from overactivity caused by Hashimoto’s disease (which is usually an underactive thyroid condition). TPO antibodies also occur in a large number of apparently healthy women (~15%), and is associated with increased risk of later thyroid problems, so probably reflects a mild form of autoimmune thyroid disease.

Was diagnosed with graves dec 10. Usual symptoms, hair loss, sweats, shakes, palpitations, weight loss, frequent bowel movement, insomnia etc. endo put me on ptu. Developed thyroid eye disease may 11. Was put on prednisilone, but dosage was not working so started methyl prednisilone in dec 11, and still receiving treatment fortnightly. Eyes seemed to have settled down from treatment and I have my thyroid checked at hospital. Now 2 and half weeks ago my t4 and tsh was apparently normal. Can I just add I have been on ptu now since dec 10. And have been on 50mg a day for quite some time. But over the past few months I have put on over a stone. I eat healthy exercise every day. Yet I am still gaining weight. Over the past few weeks my alopecia has returned, I am cold all the time, joints aching, headaches, always tired. I can’t get hold of my specialist, this is why I am turning to you. Do you think I have gone under active? It’s the only explanation I can think of for all my symptoms. I appreciate your advice.

Gina I hope you still visit this site and I know you posted your comment months ago and fingers crossed your doctors have managed to get your doses right since. Panic attacks along with feeling like I’m going slightly mad have been my main issue with Grave’s disease. If you are STILL having these symptoms you need a higher dose of beta blockers. The beta blockers aren’t just prescribed for irregular heart beats and palpitations they are also extremely effective on the psychosis symptoms of graves, eg: anxiety, depression, stress… I wish I knew why but unfortunately my doctors don’t seem to know. I do KNOW that it works though that I can promise you. My opinion is that the anxiety is linked to surpressed TSH because my anxiety symptoms only ever occur when my t4′s are normal and my doctors think I should be feeling wonderful even though my TSH is still at nothing. :-/

I was diognosed with Graves disease when I was 14yrs old. I had been ill for at least 3yrs before that and it took near death and a chance encounter with a stand in GP for me to finally be diognosed. My childhood GP after suggesting all sorts of total nonsense stated that I had simply given up on life!

The hardest part for me was being told there was no cure. And then finding out the suggested treatment would just make me as I always said back-to-front sick. After being left untreated for so long there was never any hope that I would go into remission. The only reason I have never had the surgery is because I was told I’d have to wait until I was 21 and finished growing completely. I still don’t know why this was but needless to say when I was 19 I suffered a Thyroid storm. It wasn’t as servere as it could have been and I left the hospital a week later. A few months of feeling very ill followed as my doctors preped me for the surgery. Then one day I just decided to ignore feeling ill. I don’t mean stop taking my medication or anything foolish like that I mean I refused to allow feeling ill to stop me getting through my days. I was 19yrs old and was tired of feeling several decades older! I took up dancing as an excercise method. (usful for all the extra energy and stress) and started enjoying my life again. I started listening to my body, recognising symptoms of being hyper or hypo and ajusting my medication accordingly. I’ve had some hit and miss moments but regular blood tests kept me well monitored and I had been as healthy as I could ever hope to be from that day up until recently when I was unlucky enough to contract the Flu. All infections play havoc with Grave’s disease symptoms so I have to start at the beginning again unfortunately. At 23 I became pregnant with my daughter. Some very scary moments followed as test after test was carried out but amazingly by the time I was 3months pregnant my Thyroid functions had completely normalized. Through-out my pregnancy I was as healthy as an ox. About 4 months after my daughter was born the Graves came back and I was back on the Carbimazole again.
Right now I’m feeling very ill BUT I have the added advantage of knowing I won’t always feel this bad. I’m almost 29 now. 15yrs of medications and set backs and new scary symptoms have taken their toll and of course there is still always talk of surgery with my doctors. I just don’t see the point of a surgery that cannot cure me. It also can’t garentee I’ll feel better or well. Those are my personal feelings on the matter. It has been suggested that my body has become accostumed the hyperthyroidism and that is why I feel well most of the time. Its possible. All I know is feeling well when having Graves disease is possible.

I have never heard of the block and replace treatment a few of you have mentioned and am very interested to know more. I’m usually only prescribed Carbinazole sometimes beta blockers (such as now) when I get anxiety and panic attacks. I have been lucky to never suffer from the headaches of Graves though I’ve had my fair share of symptoms. I do have the eye disease though. I used my teenage years to their full advantage and let loose all of my mood swings, sudden anger and upset. It is traumatic being told you have a disease that one way or another you will have to deal with for the rest of your life. I have to say the moodiness and extremes of emotion seem to have passed for me. Either that or everyones just too afraid to tell me I’m being horrible!

Hope my story helps and thanks to everyone who has shared theirs!