Really not much to say, except that this shows me at 15 years of age weighing less than a chicken and very clearly with graves' disease, and in particular Thyroid Eye Disease, two years after it was diagnosed, when I was 13.
I am, of course, 68 now, so it's been a long, long journey which is not over yet as I am now fighting for proper treatment for my athyrotic condition after a total thyroidectomy.
Bless you marram, that is a lovely pic 'tho, I bet everyone said what beautiful eyes you have. But if only they knew. I'm looking back too at all the weird stuff I went through since being a teenager, I can only remember a few shaky episodes, put down to 'nerves'. Apparently I'm shy! (I don't think it was Graves 'tho, as you were so obviously suffering with that, however one ENT doc wasn't sure - per symptoms). May I ask if you can still have Graves after a TT op? I certainly have HypoT symptoms after a partialT (although my TSH now says I'm fine!)
Have you tried Dr P or Dr S?, as I have come to conclude they are in the minority of doctors who can actually help us. ((hugs)) Jane 
I did have lovely big eyes but they didn't look quite so much like organ stops! You can see from my profile pic that they are still pretty big even now.
I have often wondered if, even though my thyroid is gone, do I still have Graves'? And if I do, would it still be a factor in my blood results? I did have a partial at the age of 18 and I thought I was OK for some time - but it was an illusion, I was really still a total nutter but didn't know it!
I was alright for a time I think - because I managed to become a single mum at the age of 20 - to my gorgeous son who is now 47 and still the light of my life.
It would be worth posting a question on that subject, I have been trawling all the websites I can find to no avail. Probably just not looking in the right place.
I have hypo and I am not sure if these links will give you some information.
ncbi.nlm.nih.gov/pubmed/924...
elaine-moore.com/QA/tabid/5...
medhelp.org/posts/Thyroid-D...
thyroiduk.org.uk/tuk/about_...
Thanks Shaws. I think I probably will have an antibody test at some time. If I still have TSI in my body, the hypothalamus or the pituitary will see it as TSH or the receptors get blocked or something similar, I read it somewhere but can't find it again. I was suggested that the TSH reading is therefore even more of a waste of time because the TSI 'fools' the body. Just can't remember exactly how. I'll keep reading, it sometimes takes two or three reads for it to sink in 
So sorry to hear you have had this on and off all these years Marram,I too have had Graves and am 18 months in remission .Hope it lasts.First diagnosed when i was 48.I cannot imagine what you have been through at such a young age.Wishing you so much Luck and hoping you get the treatment you need.
Kashka
I understand that Graves' can go into remission for a very long time, and I really do wish the very best for you, Kashka.
There were two older women (older to me, then!) who had the partial thyroidectomy the same week and when I saw them on follow-up a couple of years later, they both seemed to be doing pretty well. I was still showing signs of being hyper, though not nearly as bad as I had been. Shows that it is very variable from person to person. Even the symptoms vary, some people never get the eye disease but I did.
I think because of my age -the body was undergoing so many changes and the physical stress must have been huge - nothing seemed to help, hence two operations, first a partial and then a total.
It was never actually under control at all, because almost as soon as I had the partial, it started getting bigger again. I had less than 12 years of a relatively normal life before it took me over again. In a way, although it has left me hypo, it is a relief to have had the total thyroidectomy because the mental torment of those years lives with me still. I attempted suicide twice, and was even sectioned at 32 because I was having hallucinations, yet my doctor refused to accept it was the thyroid going hyper again - impossible, he said, it's a mental illness.
I would like to add, that's not the same doctor I have now, that was in 1977, but apparently today's GP is a clone of my old GP, since he is convinced that my HYPO symptoms are a mental illness too!
Your journey is very similar to my mothers.Hers started at 18 she was hyper..hypo..hyper...hypo.Had an op had partial thyroid removed,Ok for a while then went hypo..had RAI in her 40's because she went hyper and then after RAI went hypo.I think the docters werent as knowledgable in those early days.
I really do hope you can get some relief,Although as you say total removal has given you some relief.I did have very dry poppy out eyes but luckily that got better when i was on medication no lasting damage thank goodness.I feel so humble when i read all these stories and in some ways i think i have been very fortunate.Thankyou for sharing your journey .xx
Hi Kashka, I think treatment was much better for me in the late 60's and early 70's. Doctors weren't so mercenary and seemed to want an answer to most ills. Do feel these days that doctors are not learning all they could and too much emphasis is put on how to save money.
Do hope that you continue to feel well and don't take after your por Mother. Regards, Janet.
Thankyou.I just know that my mother didnt get a lot of help when she needed it and i have had a very good endo and docter.Unfortunately mum died in her early 60's of ovarian cancer which is linked to an over active thyroid.She had a lot of health issues bless her.Heres hoping i dont but they do say there is a link to inherited thyroid conditions as i have a lot of aunts and cousins on my mums side with it and an uncle and nan on my dads side with it.Heres hoping i remain well.Thanks.
We are all fortunate in one way, we have this site and we are not totally alone. There is more publicity about thyroid disease than when I was young, but all the same, it is still widely misunderstood and misdiagnosed. Your poor mum! This shifting from hyper to hypo and so on really messes with the brain. I know...
Thanks for sharing your story Marram. Do you still have the antibodies for Graves disease even though your thyroid had been taken out? I think you and others will find this website and the links on it very interesting: hypothyroidmom.com/when-thy...
I also read in a book (sorry I borrowed it and have forgotten the name) that some research found that 1 in 5 sectioned patients in psychiatric wards/hospital were found to have Hashimoto's I know that's different to Grave's but it's another thyroid disease. I truly think the health authorities should test for thyroid antibodies more often and research how to cure it not just treat but CURE it. In the same way that they screen for cancer of the cervix because if you catch it early it's easier to treat and cure. It could save them a lot of money in the long run. Cure the disease: less people need treatment for the hundreds of symptoms caused by thyroid problems (often caused by disease - but not always I know). Best of luck 
I would like to know that, do I still have the TSI in my body, I suppose if I really want to know I will have to pay for a test. I was fascinated to read some of the information on hypothyroidmom.com In m,any ways there is an overlap of symptoms between hyper and hypo, and I also think that if you are either for a long time, your brain 'learns' a sort of response to stress which it is really hard to unlearn. I often wonder if there are permanent changes which are not detected. Thanks for your feedback XX
You're probably unto something about the permanent changes All the more reason for the 'health experts' to note and try to solve the problem earlier. I fear for my daughter (possible grandchildren - haven't got any yet) brother and nephews as thyroid disease can be genetic
I understand a lot of what you went through Marram, as I too had Graves. It was finally diagnosed in 1972 when I had a new doctor in Wimbledon at the age of 27. I went on Carbimazole for 18 months, put on weight (had originally lost a stone in 3 weeks) was good for a while, went on Propranolol and got hives from that. Nothing for a while as got pegnant. Son born with quite a few hormonal problems. Pregnant with daughter 20 months later and had to have a rushed sub-total thyroidectomy at 14 weeks. Was put on 25mcg levo straightaway. Had daughter and was then taken off levo and then not treated for a further 19 years. When my daughter was 5 months old I had what I thought was a hormonal upheaval when I went on the mini-pill. Immediately came off it and was put on Valium . This, of course did me no good whatsoever. Had the usual health problems, gall-bladder, urine infections, ear problems, hurting all over, shaky and very fatigued. All the time bringing up two babies.
Once on Levo I improved no end within 4 months and was fine again until 5 years ago after antibiotics. I am as fed up mentioning it, as I'm sure everyone on here are hearing about it - should get some results next week. I luckily did not get TED, but while untreated my eyes disappeared in my face. Am only on 75mcg of Levo and anything over sends me hyper again, but needless to say I do not feel well.
Do feel this is something I have always had as got a bout of Raynauds when I was 9 years old. Will have a look at Shaws links, thank you.
Do hope you and everyoine else on this site eventually find an answer to our problems. Janet xx
We are all on a journey which does not really have a destination at the moment, because there are so many possible diversions and cul-de-sacs on the way! XX
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