Just diagnosed with graves disease

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Hi,

I have just been to see an endo and he has said that I have Graves' disease.

My levels were very high at my last blood tests but have been put on 40mg of Carbimazole and now they have dropped significantly.

They are

T3: 4.2

T4:11

TSH: 0

I am still having all the symptoms of hyper. Anxiety, brain fog, sweating, thirst, place stool, lack of motivation, fatigue, aching arms and legs etc...

He is going to do a block and replace technique and then put me on thyroxine once I see him in 4 weeks time.

My endo said that until my stored thyroxine levels in my body have been used up I will still suffer with hyper symptoms. Has anyone experiment this before?

My TSH is still 0, what is people's thoughts on this?. I'm guessing it's due to the putruity gland not giving any signal to the thyroid yet as I still have too much thyroxine in me?

The final part I need to ask is that I feel I have suffered with graves for many years but not knows it. This is due to me always swEating a lot, contestant thirst and anxiety to name a few. I was diagnosed with anxiety 6 years ago and went to Councelling and done CBT, scheme therepy and went on 40mg on citalopram and practise mindfullness meditation everyday but Nothing's touched my anxiety.

He said I might have generalised anxiety disorder to which I disagreed as I feel with the amount of work I have done with anxiety and the fact that I'm constantly stuck in fight or flight all day every day and that the anxiety has subsided for the first time in 2 years over the past 4 weeks (only twice) proves that it's the thyroid.

He said you can't have thyroid problems that go on for years that go unnoticed. Has anyone ever has this? There is feeling of dread on my stomach all the time and my thoughts are constantly saying to me that I'm in danger even when I'm lying in bed.

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5 Replies

  • Posted

    Oh James ... seems these so called doctors know so little about Thyroid Glands ...   you can DEFINATELY  suffer from it for years .. And I know that for a fact .. I have DEFINATELY had mine for years !

    and yet, I was only diagnosed over a year ago.. I knew I had something badly wrong with me .. but it was only when I was on the way into thyroid storm and had to go to GP  that he believed me !...  I ended up in his surgery saying I'm shaking inside like a leaf , I could hold my hands steady ,  I choked when I ate,

    i spilled my food as I was about to eat, my hair was falling out and I had no body hair or eyebrows.... the very first symptom I gasped was pain and muscle spasm .

    I was in a state of Terror constantly  I didn't know what the hell was wrong I was a nervous anxious wreck. 

    but the worst for me was I had a hot sweat every hour of every day and night !   I was miserable !

    and my stupid doctor , although he took my bloods could NOT see that my symptoms were GRAVES disease.

    Your symptoms will gradually slow down...  and stop James .. I started at 20mg  then 10mg then 5 mg  a day of Carbimazole  and I couldn't believe I'd ever feel well again..  BUT I DO  !!

    and so will you .. ...

    keep asking questions ...  Linda and Dan will help you very much 

    .... just ask !

    Good Luck Luvvie

    Mx🌹

     

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    • Posted

      Thanks for all your replys Madge, I really appreciate them. I thought as much, sorry to hear you were that bad and I'm glad you're better how's You have really helped me a lot. X

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  • Posted

    Hi james22918, I was diagnosed with Graves' disease 2 years ago and I had very similar symptoms. Even though my T4 level came to normal range my TSH was very low for about half a year. Then it slowly started to rise. 

    It is my suspicion that I have had a period of (untreated) hyperthyroidism more than 10 years ago. I clearly remember having a high heart rate, pounding heart, not being able to sleep, constantly being on edge, and loosing a lot of weight despite eating like a 'combine harvester'. Unfortunately, my GP at the time did not connect the dots and merely did a blood sugar test which came back normal. 

    During my last appointment with my endocrinologist (in September) I asked if it was likely that I already had hyperthyroidism years ago. He told that it would have been impossible and that it would not have resolved itself without medication. To be honest my gut feeling still tells me that I had hyperthyroidism, maybe not a severe form or maybe just transient thyroiditis after an infection.  

    Regarding the emotional turmoil that goes anlong with hyperthyroidism I found it more upsetting before I was diagnosed since at first I had not idea what was going on. After being diagnosed with hyperthyroidism I started to read about typical symptoms which included this strange feeling of constantly being on edge, along with nervousness and aggitation. 

    Instead of dreading the next anxiety attack I found it more useful to acknowledge that my current state of mind had a medical and biochemical reason (hyperthyroidism) and was rather something to be expected.

    To use an analogy imagine a day at the beach and you are standing in the water. Some people are afraid of waves and panic as they break over their heads. (Figuratively speaking this would be the moment when you are getting that choking feeling as if you don't get enough air.)  It is better to face the waves and when one approaches to streamline your body and dive into the wave letting it pass. In this analogy the waves are our emotions. Hyperthyroidism tends to increase the (perceived) amplitude of the emotions/waves. Thus the waves seem larger and scarier when in fact they are the same waves you have experienced all your life.  To deal with these emotions  I found it helpful to be aware that they are amplified. When trying to make a rational thought related to interpreting my emotions it helped me to be aware that I first have to tone them down a notch. 

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    • Posted

      Hi Dan, thanks for your reply. Sorry to hear you have suffered too. I totally agree with you, my mindfullness meditation has taught me coping mechanisms to help with my anxiety along other techniques I have been taught over the year by multiple therapists. The only bad thing is that I'm in a constant state of fight or flight which is why i debated with the endo about him saying I might have GAD. I can meditate to a level where my anxiety decreases but never really goes away. Once I stop meditating it comes right back. I'm not anxious about being anxious nor am I anxious about anything in particular I'm just on edge all the time. My mind likes to take me on a journey of worry and catastrophe. I see all this and the emotions that comes with these thoughts but they do not stop. I've learnt to accept them and come back to the present moment and I've done this for over a year and they still continue. For me I'm not reacting to the anxiety. I do not hate it, I only see that it's only my inner critic or super ego trying to protect me the only way it knows how by using fear. But for it to be so consistent with all this training I have had and with no break in my anxiety in over 2 years says to me it's my thyroid rather than GAD.

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    • Posted

      Hi James,

      The Block and Replace method is mostly used in the UK.  I never hear of anyone in North America using it.  For myself, I caught my hyperthyroidism when it was first starting because my thyroid was routiniely monitored for other reasons.  I was started on 10 mg of Methimazole (same as Carbimazole in England).  However, although it controlled my excessive thyroid hormones, my TSH did not rise above 0 for two years until I added supplements to my treatment regimen like vitamin D (extremely important and often deficient in hyperthyroid patients), Regular L-Carnitine and Acetyl-L-Carnitine (an amino acid usually found in the body that becomes deficient in hyperthyroid patients, and Magnesium.  I would suggest that you learn as much as you can about your disease and ALL methods of treatment.  For myself, when I added supplements to my Methimazole, my TSH began to rise and a lot of symptoms improved.  I have also confirmed by blood work that my Graves antibodies have now normalized.  Also when you post labs to this Board, also post the normal ranges for each test as these ranges vary from lab to lab.  I really think even if you do a Block and Replace regimen, that you have to replace the vitamins, minerals and amino acids you have lost when you were hyper.  Besides normalizing all my thyroid results, I really wanted to confirm that my antibodies were now within the normal range.  I will send you more information about Graves in a private email.

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