Diagnosed but no meds!!???

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I have had symptoms of graves for nearly a year but took till June to get it confirmed. My consultant has just told me to take selenium supplements and go back at the end of September to see if there is any change! Surely this can't be right? I don't sleep very well at all, am tired all the time, my eye is swollen permanently and I suffer with bad headaches which I think are linked. Cant see properly out of one eye, I have lost weight, have no energy. Just don't know what to do next. Consultant wouldn't even discuss things with me. Thanks for reading

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  • Posted

    Is your consultant a physician or a naturopath?  Hopefully it's a physician.  It sounds like you have Graves disease and Graves eye disease.  When I was diagnosed, I had blood tests for TSH, Free T3 and Free T4 as well as for Graves antibodies.  I also had a radioactive iodine uptake test and a thyroid ultrasound.  If Graves is confirmed, you will require medication to block your excessive thyroid hormones.  I would get a new physician.  Also, while you are waiting to have all this done, one thing you can do is start on L-Carnitine 1,000 mg and Acetyl-L-Carnitine 1,000 mg. daily.  You can take them together and if you get medication added, you can also take that together with the Carnitines until your TSH level normalizes.  Then you can with your doctor's assistance, decrease the amount of medication and just continue on the carnitines.  At diagnosis I was treated with 10 mg of Methimazole (same as Carbimazole in the UK) for 2 years and my TSH blood result was not even on the map.  Then when I added the Carnitines it rose very quickly to normal levels.  Most recently, my eye irritation has abated so I think if you take the Carntines until you can get a new doc, it will help replace the carnitine that is lost in your muscles through urine in hyperthyroid patients and it should help how you feel.  Please keep us posted as to how you are doing.
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  • Posted

    PS to Paula

    You can find the L-Carnitines in Health Food Stores or ask them to order for you.

    Linda

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  • Posted

    Hi Paula, so sorry to hear all that, why so long i cant understand it, can you not try see someone else, ive been going through it for about 6 weeks now, still waiting for an appointment with an.endoc. Consultant, getting bad headaches, feeling v.poorly and just want help to get on the right meds. It looks like you just hVe to keep pushing things, its awful to feel so poorly and we just seem to be left to suffer.

    i wish you luck, but do try to see someone else. Cathy.

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  • Posted

    I was horrified to read this.  Sometimes you have to make a fuss to get treatment.  I got my gp to prescribe a low dose of carbimazole while I was waiting to see the endo.  It helped a lot.  .  The symptoms can be so severe I can quite understand your concern.  Message to Linda:  I'm trying the carnitine supplements.  Thanks for the tip. 
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  • Posted

    I would get an appointment with your GP as soon as possible as I assume it was your GP who referred you in the first place.  If so, your GP must have suspected Graves and probably took a blood test, if so, what were the results? If you post your results, along with ranges, someone on this site will advise you.
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    • Posted

      Hi, my doctor actually took 3 months to refer me as the insisted I had an eye infection! It was my optician who told the gp to refer me. Then had to wait another 3 months for an "emergency" appointment where they arranged an MRI and took bloods.  Was then told would be see within 2 weeks and surprise surprise another 3 months and saw the consultant. This is the one who couldnt give me any info and told me to eat brazil nuts and take selinium supplements. He said he didnt want to give me meds as they are quiet aggresive? I have just recieved my next appointment for the end of september! Whats the point? He said I could learn to live with having a  bulging  eye because a lot of people do! Its not just that though. Its all the other things goin un treated. Am going ro see my gp today to try to get some answers. 
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    • Posted

      Paula, it sounds like you have received dreadful care so far, I hope you have managed to get some answers from your GP by now.  Put your fott down & demand to see someone else, we all have the right to 'choose & book' via NHS to go to another hospital if necessary.

      In my experience you are only a number on a page, they will see you & move on quickly to the next, it is their mission to get you treated in the fasted way they can so that is one less on their books.  Also don't feel pressurised into making any long term decisions untii you are ready.

      I am trying to put my Graves into remission by using natural treatment methods, this is not easy & I am yet to see some visible results but I'm certainly not giving up & truly believe I am still doing the right thing.

      So my advice to anyone is research as much as you can it will empower you, remember its not your thyroid that is broken its your immune system not functioniing correctly not that any endo or doc will be interested in getting to the route cause of your problems.

      All the best

      Ann

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  • Posted

    Paula, it's unimaginable to me that you have presented to your physician with the symptoms you mentioned, especially the eye problems and they don't know that it is Graves?  I met a lady at a thyroid conference here in Toronto who had a bulging eye and problems with the other eye and she told me she had seen 5 physicians before she was diagnosed with Graves.  When I told my GP that and another physician, they were shocked!
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