[ely2009]

#1071259

Wanted to say welcome. I found this board TREMENDOUSLY helpful after my diagnosis – and still do! I know there are people who post regularly that are in the UK. They may have the info you are looking for. Good luck.

Emily

[jeanette]

#1019375

Is there a support group for the UK does anyone know? I am in Scotland I have Graves and TED, have not been given any treatment, been referred for brain scan quite soon. only diagnosed few weeks ago, i’m 50. Any help or advice gratefully recieved. Thanks

[mamabear]

#1071260

I don’t know of a support group in that area BUT we surely can help with it. We are a great cheering team!!!

Welcome !!

[hyperm]

#1071261

Hi Jeanette,

Welcome! I am from Scotland too! Nice to know another fellow Scot is on board – although sorry thats its because of your recent diagnosis.
I have had contact with the Bristish thyroid foundation (or something similar) but they don’t have a forum so I didn’t find it to be of any use. I have, however, found the people on here to be my life line the last few months. I don’t think you will find any better.
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M xxx

[jeanette]

#1071262

Thanks for all replies. I don’t understand why I haven’t been offered any treatment, don’t see endocrinology people until end of June. GP seems to waffle around subject and says won’t make any decisions until result of brain scan. Is this normal? TED affects only one eye, and has been giving me a lot of pain, ive looked for info on net and from what I see, I have had the symptoms for a number of years but always told it was depression and anxiety. Nice to have people to talk to about this.
Take care Jeanette X

[catsmum]

#1071263

Hi Jeanette,

Welcome!
I’m from the UK too (just south of the Scotland border). I don’t have Graves but my daughter, who’s only 17, was diagnosed in February. She didn’t have a brain scan but doesn’t have the TED at the moment so maybe that’s why. She is however having thyroid scans & regular blood tests.
I’m really surprised you haven’t been put onto meds??? Our GP spoke to the endo over the phone for advice & then prescribed my daughter meds as soon as they diagnosed her hyperthyroid and before they’d confirmed Graves. Has you GP given you your blood test results? If your levels of thyroid hormone are too high this can be dangerous & the levels need to be brought down.
You say you have been diagnosed with Graves which suggests you’re blood test was positive for auto-antibodies. I would either ask the GP to contact the hospital & have your appointment with the endo brought forward (if you know who you’ve been refferred to I find it useful to call their secretary & ask them to call you if they have any cancellations), or ask your GP why they haven’t offered treatment to control the hyperthyroidism or it’s effects (beta blockers are usually given initaially to slow down heart rate etc).
You may find you need to be a bit more assertive with the GP, perhaps they don’t have much experience of this condition but it is very worrying for the patient & family. Sometimes having someone come to your consultations with you can help as they can ask questions etc that you need answering as, I’m sure you know too well, thinking straight can be difficult with Graves.
Use this forum to find out as much as you can about the condition so that you are armed with knowledge when you see your GP.
Take care of yourself,
W x

[jeanette]

#1071264

Hi W, catsmum,
Thank you for your reply. Sorry that your young daughter has this illness. I believe I have had it for a number of years, I’ve certainly had some of the symptoms for a long time. Everytime I visited the GP I was told my problems were GAD – General Anxiety Disorder. I saw various GPs during this time, but I think the general consensus was that it was all in my mind. Finally getting a diagnosis is a relief, but I really find it difficult to foster a good relationship with doctors. Except my endocrinologist, who Ive seen a couple of times. She sent me for thyroid scan and has told me my bloods are off the scale, but if she mentioned actual numbers I don’t remember. Memory and tiredness my worst problems. Ive had TED in one eye only for almost a year. It was my optician who noticed this and suggested a thyroid disorder. Thank goodness i went for eye exam!
My GP referred me to neurology, and I saw a neurologist two weeks ago. He arranged MRI scan for Tuesday 12th, but unfortunately I have had to cancel this, have another appointment in two weeks. I don’t plan to see GP meantime unless I absolutely have to, I will see opthalmology people in June too. If people tell me statistics or numerical data I am likely to forget it or not be able to make any sense of it anyway. So I guess the scan is the next step, and June isn’t that far away. Anyway thanks for listening and taking the time to correspond with me, it is much appreciated, your daughter is lucky to have a concerned mum on board. Take care, Jeanette

[catsmum]

#1071265

Hi Jeanette,

I can totally understand how when people tell you stuff you forget it as I have ME & it has a numbr of similaritied. My poor daughter is trying to sit her A-level exams at the minute – imagine doing that with Graves….
I started asking my doctors for copies of all Cat’s test results so that I have a record to look back at. It’s good that you have a positive relationship with your endo, we seem to see a differnt one at every appointment which is less than helpful as you can imagine. When we saw the last endo he said she shows no sighns of eye involvement however she is complaining that she is finding it takes her longer to focus now. The optician checked her but he just said that the endo would watch for TED. I am going to ask for a referral to a specialist opthomolagist just to be on the safe side.
Cat has a thyroid scan in the morning as she developed a goitre quite suddenly. Hopefully it will be good news though.
Take care of yourself,
W x

[jeanette]

#1071266

Hi, Just a quick word to say I hope Cat’s thyroid scan was ok. I’m sorry you have ME, I think I read an article somewhere on the net which claimed that ME, rheumatoid arthritis, and Graves are linked to the same underlying autoimmune condition. But I’ve read so much recently and forgotten at least half of it that I may be wrong. I haven’t left the house for a few days now and am feeling stir crazy, but tiredness has prevented me from venturing out. Because of TED I had to give up driving cause of the double vision etc. and I live at the top of a hill (the bus stops at the bottom). So if I feel I can’t manage the hill I don’t go out. I’m getting plenty of rest though, and my son has kindly done some shopping for me. I’m guessing your life is pretty restricted too. I didn’t expect to feel this old at 50, or to sometimes sleep 16-18 hours out of 24 and still feel tired! I hope I can be offered some meds to change things a bit. Its nice in a way that you and Cat have each other for support, although of course it would be better if you both got suddenly well! If only life was that simple.
Take care for now
Jeanette

[catsmum]

#1071267

Hi Jeanette,

Cat’s scan showed anomolies on the right of lobe of the thyroid which is more enlerged that the rest, but the radiographer can’t tell us anything more so we have to wait & see the endo next week.
I totally emphasise with how you feel. Many of the ME symptoms seem so similar to those Cat suffers when she’s hypo that I think the conditions must be related somehow. I too can easliy sleep for 16 -18 hours a day. I get up in the morning & have about 1-2 ‘good hours’ when I can get out & about a bit before I have to sleep again. However, if I wash my hair it takes so much out of me that I have to sleep afterwards. I feel so pathetic at times, I’m only 43 but feel about 70 at times! Like you I live on a hill & can’t walk the 200 yards up it into town so have to take the car which seems rediculous. However, there are good days when I can get out for an hour or so so I savour those.
I did try graded exercise programmes which have been shown to be beneficial to those of us with chronic fatigue but found it difficult to motivate myself so my GP has referred me to ‘Health Start’ which gives me a personal trainer for 4 hours a week at the local sports centre. I can swim, do gentle exercise class or use the gym & do it at my pace which is good, although I must admit some days I’m just so tired I can’t even make it there, but knowing there is someone to support me is a big help.
Now the weather is improving, maybe you will be able to get out a little more, even just 5 minutes gentle walk around the neighbourhood, or even sitting in the garden for a short while can do wonders for your mood.
Take it every day at at time & be good to yourself,
W x

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