Feel like I'm going crazy, what should I do?

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I have had hyperthyroidism twice in the space of ten years which has been controlled with carbimazole, and I have suspected graves but it is not confirmed. My moods have been terribly up and down throughout this time and very bad lately so I went to doctors for blood test, but my tsh came back normal: 1.0. I feel like I am going crazy sometimes and don't know what to put this down to anymore!! My doctor is sending me for a psychiatrict evaluation but I still can't help thinking it is thyroid related, any advise please? 

 

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  • Posted

    Susie, the TSH on it's own is unreliable.  You need to insist on the whole panel of tests.  You need FT3 and FT4.  After they have done these you may need an antibody test to confirm Graves.  Your doctor may do the antibody test with the other two if he's nice.  

    I have been undiagnosed for 20 years after a partial thyroidectomy.  I didn't know until I became extremely ill that TSH on it's own is not enough for a proper diagnosis.

    There is a page on Facebook called Thyroid group uk which has lots of information and support.

    My doctors have had me on and off anti depressants for years with a diagnosis of anxiety - anxiety is one of the major symptoms of hyperthyroidism.  

    I guess it takes a while for a doctor to see the bigger picture and they treat the symptoms in the meantime.  

    I eventually got to see a mental health team, 2 months ago, right after my diagnosis.  They have seen me and are going to discharge me at the same time as they understand the thyroid condition to be the source of the problem.

    Do your level best to get the full panel of tests.  Also check for B12 deficiency if you haven't already.

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    • Posted

      Thank you for your reply nisee. The problem is I have asked a few doctors in the past and my doctor at present, for more blood tests but they won't do them unless my tsh is low. I too have been on and off anti-depressants most of my life and yet it took me literally kicking and screaming in my old doctors surgery to get noticed, that's when they reluctantly blood tested me and found out my tsh was 0.1. I feel awful for you that you had to wait so long to be heard, I just wish that they would see the bigger picture. Thank you for the advise on Facebook page. 
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    • Posted

      Having got as ill as I did (down hill very fast from end July to diagnosis in December), if I could do it all again I would have either changed my doctor to one on a recommended list through the thyroid group, or saved some money and got the tests done privately.  You can order a kit online and your surgery shouldn't have any problems taking it for you if you are paying, or you could go completely private if you have the money.  Unfortunately bureaucracy is keeping some of us ill, instead of helping us to get better.  20 years is no joke, the NHS would rather stick to the guidelines than investigate or treat us.
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    • Posted

      I do think you are right nisee, maybe private is the only way to go. It feels good to hear that I am not alone, but awful to think that so many people are being ignored. I guess that I will have to go through the mental health procedures and prove to them that this is not in my head.
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  • Posted

    How old are you, Susie?  Could it be female hormone related?  Are you under particular stress that is not related to the GD?  Have you ever been prescribed anti-depressants?

    The only advice I might give you is to stop worrying about the thyroid for now.  Even if it has something to do with it, if the TSH is normal, the doctors will not do anything about it, and there is no great cause for concern.

    Concentrate on eating well, and give yourself opportunity to get enough sleep.

    Best wishes.

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    • Posted

      Thanks for your advise fern. I am 35 years old, and yes I have been on and off anti-depressants most of my life. The problem is none of them really helped. I have also seen countless amounts of councillors and psychotherapists and managed after seeing one for a long period of time, beat the depression I had. Which is amazing, don't get me wrong! But the reason I got so depressed in the first place was due to extreme anxiety, and even with anti-anxiety drugs I still get bad. This is why I think it is possibly graves related, but I hear what you are saying and appreciate your advise. Even if it is there is very little I can do, I guess I will just have to see what the mental health team say, thanks again.
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    • Posted

      Most antidepressants have affected me horribly too, but I'm on Welbutrin now which is a different type, and it is helping me a lot.  Not that you should necessarily be on that either, I'm just saying that there are other options.

      Aside from having a TSH that is abnormal, I don't know what else you can do, but I have heard there are certain veggies that can act slightly like an anti-thyroid drug:  Cauliflower and Broccoli, I think are some.

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    • Posted

      thanks fern, they are definitely worth giving a go. You get to a point where you will try almost anything. I will definitely take your advice seriously and thanks again for your reply.
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  • Posted

    Hi Susie,

    See another doctor if need be but get more tests done. Doctors tend not to look further than their nose. I was only diagnosed after changing doctors after having a really bad day and was very despressed and had the shakes. This after losing 14kgs and my eyesight went really bad. Old doctor put mine down to stress but when I went to new doctor and she did a heap of test my t3 and t4 levels were really high and she got me to a specialist straight away and I had treatment immediately and eventually a total thyroidectomy. If you dont feel right do something about it. We know our own bodies and we know when something isnt right so check it out....good luck

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    • Posted

      thanks for your advise Debbie. I am pleased that you eventually got heard. My biggest problem is no one will do the other blood work, and believe me I have tried! I have even thought about going privately, but can't afford it at the moment. I totally agree with you that you know when your body isn't right, but getting somebody to hear that is almost impossible. The problem is I have been on and off anti-depressants most of my life and have always been labelled as depressed, even though it was all down to major anxiety. So pretty much anything I say now is discarded and put into that box, even though I am not depressed. It took me one day when I had just had enough of my moods, screaming (literally) into my old doctors surgery (about five years ago) for them to reluctantly blood test me to find out my tsh was 0.1. I am just really concerned that if this is left my moods will get like that again! 
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  • Posted

    Susie I understand totally.  Have felt like screaming and throwing things so many times.  Your doctors dont sound any better than the idiots here.   My only suggestion is agreement with Fern12.  It is apparently our diet that got us into this mess so we need diet to help us get out.  I recently spoke to a lady here that had Graves and she chose the healthy way to try and bring it under control.  It took a good 12 months to take effect and she said it was worth it.  I didnt change my diet totally as love my junk food and I had no choice any way as thryoid was totallly toxic so had it out and got instant relief.  Look into diet to help you in the mean time and try and find the money for other tests.  Do you have any family that could help you???  The only other thing I can suggest is when I got into one of my moods I would think to myself that it is the disease that is making me this way.  If I just keep breathing in and out for the rest of the day I will feel better tomorrow. and I usually did. 
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    • Posted

      thanks Debbie, it's good to hear that I am not on my own with this. I feel like a ticking time bomb just waiting to explode. I know it would definitely help me if I could get a proper diagnosis so I think more tests done privately is the way to go. But I also think diet does play an important role and I am trying to eat very healthily at the moment, it does get hard though because when I feel down all I want to do is eat junk!! My support network is limited because people have pretty much had enough of me mentioning my thyroid, but if it wasn't for my persistence I would never have become diagnosed as hyperthyroid in the first place( about five years ago)
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  • Posted

    I would say see another doctor. It took me 5 years to get someone to listen they kept saying i was a making my symptoms up and no one belived me not even my family until one night they nearly lost me thats the only reason i got diagnosed an it was by a locom doctor standing in. If it hadnt have been for her i think i wouldnt be her today my FT3 was 167 and i had 0.01 tsh heart rate of 170 bpm i thought i was dying and not even addenbrookes hospital could diagnose they sent me home !!!!!!!
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    • Posted

      Hi Sarah, that is awful! I totally understand how you feel about getting people to listen. It is as if you are going crazy and all in your head, but like debbie38655 says you know when your own body is not right. I have had a tsh of 0.01 but never been that bad, poor you!! I really feel for you. I think I will get more tests done privately at least then I can get a proper diagnosis and go from there I guess. Thanks for your reply.
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