Graves' disease symptoms, what do you experience?

Hi Lisa,

You are not alone. I was hyper active too, and after 4 attempts of Carbimazole (over a 10+ year period) it was agreed that I would need to have radioactive iodine because each time I would come off the Carbimaz. I would eventually relapse and become hyper again. I never experienced the hair loss but the fatigue is my biggest complaint (still)-the no get up and go I relate to 100%. Whether you are hyperactive on meds or you have had radioactive iodine and are on Thyroxine, my belief is that the symptoms are similar; those of us who are used to being overactive, etc. and are then put on the meds, or have had the thyroid zapped completely....often find it hard to adjust to this new "notmal". I am sluggish most of the time, regardless of how well I've slept. I train at the gym 2x/week yet I am always complaining to my trainer re-how tired I am whereas pre-iodine treatment I had loads of energy and actually lost weight from exercise; now I exercise simply to keep my weight from increasing...I am not losing anything. It's hard....really hard. I don't think patients are prepared enough for the effects of thyroid treatment and I sometimes don't think the health care professionals understand just how bad we feel. I am a psychologist and a colleague of mine who specialises in health psych. told me (after he heard I had had the iodine treatment) "if I had known you were considering it I would have advised against it". It isn't the case that everyone agrees that it is the best treatment, etc. There are pros and cons to each treatment option, and the reality is that we, the patients, often don't know how awful we will feel until after the treatment. All I do know (and this is what keeps my anger levels at the fact that I had the radioactive iodine down) is that being overactive is more dangerous than being underactive, as far as effects on your heart, etc. so though I really understand how awful your symptoms are-you are better off being treated than not.....if you know what I mean. My warmest wishes go out to you...

Hi Lisa.  I live in Canada and am on another Graves patient Board and I hear your story all the time.  I have Graves and was diagnosed very early so my values did not get too much out of control.  Currently I am doing really well and I credit that to the fact that I took a lot of supplements along wth my Methimazole (same as Carbimazole in England).  The main ones that helped me were regular L-Carnitine and especially Acetyl-L-Carnitine 1,000 mg along with vitamin D, 1,000 units, and Co-Enzyme Q10 150 mg.  I also watched my diet and tried to cut the sugar in it.  Carnitine is an amino acid that is normally found in the muscles but is lost thru urination in hyperthyroid patients and needs to be replaced.  Most endocrinologists do not know about this and will not endorse it but there were studies carried out in Italy that validated this so if you decide to use this, know that it is likely your doc will not know about it or endorse it.  Most people who use it find it controls most of their symptoms and they are able to decrease their dose of methimazole rapidly.  You can google this topic of L-carnitine and Graves and find a lot of information about it on the net and on youtube. 

Hi Lisa

you're definitley not alone! I was crazy hyper the year befor last and was in hospital for two weeks. Was diagnosed with Graves put onto B&R and it worked!! totally normal now - so there is light at the end of the tunnel! I stuggled desparately with fatigue (and still do to be honest so perhaps not totally normal after all).  Must be nightmare with the kids! I found I felt better when they got my levels back under control but i did have sore joints and double vision for a short while!! Probably haven't helped at all - but you're not alone! neil

Hi Lisa,

goodness one thing you can guarantee with thyroid issues is that you are not alone! The number of people who either already have it or will develope it are beyond counting. I for one would love to know why and how this has become so common.in the meantime these sites help tremendously -especially if you need to talk. The hair thing will get back to normal once they get the medication right. My hair,nails and eyebrows all but disappeared and I put it down to an age thing as I am Over 60 but they sell came back again and yes, everything looks out of conditionrTher like you are actually feeling at the moment. Ask to get your vitamin d levels checked its common for them to deplete with thyroid issued. I take supplements and swear it helped get my hair back but only once the medication takes control and gets your thyroid levels even. Hope this helped.