Graves Disease Support

[aimes1981]

i was stable of Graves about 3 years before falling pregnant. All through pregnancy I was stable ( i was monitored constantly) and only 6 months post partum did i realise it had returned. I lost about 10kgs almost instantly. I have seen a consultant and am now on 30mgs of Carbimazole a day. I've just had the results to my latest bloods and have been informed by my GP that everything is looking a lot more under control and he is very happy to keep me on the same dosage. However i am so surprised - I thought my results were going to say something different… my symptoms seem to be worse - my heart beats, trembling hands, increased appetite - the usual, though I have no eye swelling or visible throat swelling either. I go from real hyper to a big slump and i find it increasingly difficult to get out of bed in the mornings… My moods have been erratic and i am getting the hot sweats though i will say that has calmed down a lot. I actually feel as though i have put on weight - I've never been a skinny person. Has anyone been through anything similar? I am terrified of putting more weight on more than anything. I have an appointment with a throat surgeon in a months time.. can anyone make any comments of if they have been through survey with graves disease and was it successful?

Look forward to hearing from someone/anyone in the same boat xx

[Hennerton]

I have Graves and had a year of feeling dreadful, before I had a thyroidectomy. It would be a good plan for you to ask for the results of all your blood tests and try to work out what the levels were when you felt as normal as possible. Then try to aim for that level. I found I always felt better when my T4 was lower than my endo thought it should be. I asked for regular blood tests, usually every two weeks. Think I drove them crazy but being anxious is all part of Graves, so I think my GP just went along with it. Only you know how you feel, so take control and try to get it as reasonable as you can.

I was never perfectly well, so went for TT quite quickly when my endo suggested it. Big mistake. Don't be persuaded to do anything drastic until you are absolutely sure. The endos seem very keen to push either Radioactive iodine therapy or TT but you can stay on Carb for years if you prefer and feel good. I do hope you settle soon on the right level and begin to feel better. xx

[greenginger]

Everything you have described is common. I was on carb for 2 years and it took that to stabilise. Putting weight on when taking carb is also very common. It will come off when you come off it. Try to relax as much as possible and de stress. All the best.

[tilly83]

Hi Aimes,

I have been diagnosed with Graves after series of sore throats, thyroiditis and weight loss.(following intense period of stress including son on tour in Afghanistan at a FOB were one in four were killed or injured.)

I was initially put on 40mg carb daily in Feb when T4 was nearly 70..... Elected to reduce dosage if monthly blood results came more under normal range. Endo pushed RI...and talked about surgery like it was having a pedicure so decided to take things slowly.

Put on a stone - but had lost a stone. Now only on 2.5mg carb, back to running and lost a 1lb!!!! I do get the odd palpitations - if I have gone for a few wines and eaten late....Have to be a lot more careful about food.... ditched wheat completely, barely any caffeine and no booze during week (thank goodness it's Friday!) I have acupuncture once a month and a massage. Can honestly say I feel well and bloods stable. Always touching wood and counting blessings. Just got told have a place to do MA at university starting next September, so joyful after horrible start to this year.x