Graves/Hyper 4 years.High anxiety/low energy/fatigue

Are there any Graves/Hyper patients out there who can relate to how I feel ?

In short, diagnosed with Hyperactive thyroid and Graves 4 years ago. Presented with many symptoms at diagnosis - rapid, thumping heart rate, racing thoughts, extreme weight loss, trembles, heat intolerance, anxiety, palpitations, fatigue, breathlessness, cravings, a strange double vision, drying skin and bad hair !

I was put on Block & Replace, didn't work for various reasons a) left on it for far too long with no changes in doses of Levo or Carbimazole b) Felt that Levo didn't quite agree with me. Endo pushed me towards RAI but refused and am now on Carbimazole Titration and down from 40 mgs daily to 5 mgs daily.

My main concern is that I have little or no strength to do what used to be so easy to do i.e. make a bed, shake the duvet, lift the ironing board or lift my shopping from the trolley into the car, lift my 2 year old grandson onto my knee without feeling winded/breathless !? On some days even taking a shower leaves me exhausted.

On rare occasions I seem to have a burst of energy when I CAN actually manage to do some housework (nothing like I used to do in a day before Graves) and then the following day I'm exhausted again.

Graves has certainly taken its toll and has given me high anxiety for which I have had 2 x 6 weekly CBT sessions one last year and one this year and I have just recently been prescribed medication to help with anxiety.

I lost a lot of weight and muscle prior to diagnosis and haven't yet managed to gain much - I lost 1.5 stone and have only gained around 2 lbs. I was very slim before the weight loss (but strong) so couldn't really afford to lose anymore - I guess a stranger would think I am anorexic (yes I'm that thin) and also look older than I am.

Can any Graves patients relate to any of this at all ? I just want to feel "normal" and don't know why some others feel as though they are back to their normal selves.

Thank you in anticipation

Christine

4 Replies

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  • Hi I had Graves disease and they tried radio active iodine but it didn't work and so I had my thyroid removed. It was regulated well with T3 and T4 but they have now taken away T3. jfp

  • Thanks for your response. How are you coping now without T3 ?

    Christine

  • Hi I'm hyper with Graves and thyroid eye disease. I believe I've had it from around 2011 but was not diagnosed until late 2015. I have lost 3.5 stones and only put back around a stone. I too have serious muscle wastage and weakness. I also have very bad anxiety but it comes and goes. I tried CBT but it doesn't work very well for people whose anxiety has a physical cause. I have counselling to help me come to terms with the fact I now have a lifelong condition and will never be the person I used to be. I look in the mirror and do not recognise the person looking back at me. I take Carbimazole and am hoping to achieve remission this way. I have blood tests every 4 weeks and alter my meds every 8 weeks according to how I feel and the FT4 and FT3 levels in my blood. I'm now considered euthroyd but unstable. I do feel better than I did but have limited energy/stamina so I have to pace myself. I haven't been able to work for 2.5 years but do try to keep myself busy. I am still struggling and have days when I sit and cry for all I have lost. BUT I will not give in and am determined to regain my freedom ( I have panic attacks when driving alone sometimes so my world has shrunk to a five mile radius of my home). Some people get back to 'normal' quite quickly and others take a while longer. I keep a journal so I can remind myself how far I've actually come so I don't have to think on how far I've got to go... never give up and never give in and it's okay to feel sorry for yourself. What are your current blood levels? There is also hope on the horizon as there are two new drugs under trial which will work on the antibodies so I'm holding out for that x

  • Thanks for your response Karen. Very similar story here, will PM you shortly.

    Christine

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