Support groups in Scotland (Fife/Tayside?)

[kmc94]

Hi, this is my first post. I was diagnosed with Graves disease in March this year at 23 years old. I am really struggling to cope with not only my physical symptoms but also coming to terms with everything psychologically. I feel like I will never feel better and feel very lonely and that nobody around me understands. GP and consultant not interested. I was wondering if anyone knows of any support groups in the Fife/Tayside area? Or anything else that has helped others? Many thanks in advance. K

[MrsGraves]

Hello kmc94

Sorry to read that you are feeling so poorly - Graves is totally overwhelming at the beginning isn’t it? I know what you mean about the loneliness- no one I knew had ever heard of Graves and when you mention thyroid everyone thinks you must be underactive. It doesn’t help if your GP and Consultant are not being very supportive.

My consultant was fabulous but he advised me to do the following:

Read up and learn all about Graves

Demand 4 weekly blood tests via GP

Keep records of all test results and a daily diary of how I was feeling

Telephone him if I felt I was feeling worse and not better as the days / weeks went past

Use this forum - the folks on here are terrific and have such a wealth of knowledge and experience. You may not believe it right now but you will get better - it just takes a bit of time. I had every symptom under the sun and went to hell and back with Graves but there is light at the end of the tunnel.

We live in the same part of Scotland! I couldn’t find any support groups closer than Glasgow when I was diagnosed years ago and even that group was purely for Underactive sufferers. If you want to chat / rant etc. message me.

Take care of yourself.

[shaws Administrator in reply to MrsGraves]

That would be nice if you could both meet up. It makes a huge difference when we don't understand what's happening to our bodies when medication doesn't yet seem to improve it. We feel quite very lost

You can also search 'Graves' and read past posts which information may also be helpful.

[Stourie]

A few years ago I know that there were support groups at Kirkcaldy hospital and also Ninewells. I never went to them as I seemed to be surrounded with people who had hypo as I have. If you need someone to talk to I would be happy to meet up. I am in Perthshire. Jo xx

[Fruitandnutcase]

This site was a life saver for me. You’re right, people just don’t get how I’ll you feel with Graves. In my case I lost so much weight I looked good. Inside I was a mess.

I thought I was developing dementia or was becoming mentally ill. It was quite weird and like yesterday u I didn’t know if anyone who had had Graves although when I told one of my sons he said oh that’s what some pop star he knew of had.

I always did what Mrs Graves’ doctor recommended. I got a page a day diary and kept daily notes on how I was feeling. Just bullet points rather than an essay. I also kept a note of all of my blood d tests and doses of carbimazole and later carb and levothyroxine too.

I kept a list of questions I wanted to ask and useful articles I picked up via this site but really it was TUK that was my life saver. There was always s9mene on here who had either felt how I was feeling or had had m symptoms and understood how I felt.

The day I picked up my first prescription for carbimazole my pharmacist told me to take high strength vitamin C with it so I always took high strength slow release vitamin c and zinc. Following advice from others I tested my vitamins D and B12 and my ferritin and folates. You need then to be well up in their ranges to help your thyroid function.

I was in my mid sixties when I was diagnosed and I needed a lot of rest, fortunately my kids are grown up and had left home so I was able to do very little. I was always exhausted - it felt like I was tired right through to my bones - to begin with. Bad tempered, intolerant, weepy at times and generally hard to live with.

So stick with us on here, we’ve been there and know exactly how you feel. You will get better. My first post on here was to say ‘Will I ever feel normal again?’ And yes I do. Or as normal as I will ever be.