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  • LynneB54
      Post count: 32

      Hi Steve,

      Oh man – this just isn’t fun, is it? I’m so sorry you’re still feeling so unwell after a year. I’m new to this so I can’t offer much of anything but sympathy. However – some of your symptoms sound very familiar to me – especially the restless legs (especially when trying to sleep; just can’t stay comfortable…) and the muscle weakness (I have it in my thighs). I had heart palpitations too, but that, racing heart, and hand tremors have gone away since the doctor put me on a beta blocker. That has helped immensely!! You may still be having heart symptoms without knowing it. You might want to check that out with your doctor.

      Other than that, I’ve learned from reading the posts that we all have symptoms that seem to come and go. I don’t think there are any quick fixes – some of the symptoms are apparently here to stay for awhile. Hopefully you’ll get your thyroid numbers were they need to be for you and you’ll start feeling better soon.

      I sure hope you get some answers soon as to why you’re feeling so unwell.

      Best of luck to you,
      Lynne

      Ski
        Post count: 1569

        Hi Steve,

        Second try! <img decoding=” title=”Very Happy” /> My browser crashed just as I was posting a response….

        You say that your thyroid hormone levels have been tested, and they are normal, so it’s appropriate that your doctor is testing for other things. Still, if the thyroid hormone level you’re looking at is TSH, it responds very slowly to changes in your thyroid hormone levels. It is the hormone released from the pituitary in response to T4/T3 levels it senses in the blood, sort of "averaged" over a few-week span. As a result, the TSH level you get today could be very different in a few weeks, if indeed your levels of active thyroid hormone (T4) are rising, so you may want to ask about having that re-done if nothing else pops up in the meantime. Get copies of those test results as well, if you don’t already. It can be very helpful to see how this month’s levels compare to last year’s ~ the normal range is HUGE, so you can be testing "normal" and yet still be experiencing a fairly steep rise in thyroid hormone levels from last time.

        On ATDs (anti-thyroid drugs ~ carbimazole being the UK equivalent of methimazole in the US), our thyroid can still be vulnerable to rising levels of antibodies (they rise and fall for reasons no one understands, unfortunately), and so it is possible for the thyroid hormone level to rise and, again, cause a little havoc. I think it is helpful that you already know the symptoms, because you are actively searching for a reason and treatment quickly.

        Please let us know how this works out, I know it’s frustrating when you don’t know what’s going on.

        Steve_M
          Post count: 2

          Hi I am new to this site and was hoping for some feedback.

          I was diagnosed with Graves Disease a year ago and was put on 20mg of Carbimazole per day. I visit my local hospital on a regular basis and have the thyroid blood tests which have indicated that my thyroid levels are returning to normal as my doseage has now been dropped to 1 x 5mg tablet every other day.

          My problem is that I am still feeling incredibly unwell, I have been to see my local doctor who has sent me for more thyroid blood tests which have come back as normal and have also had a glucose blood test and a cortosine test both of which returned as normal. I am awaiting the results of an ecg and also a 24 hour urine test.

          My current symptoms include a weak and tingling feeling in my legs (jelly and restless legs) I have diorreah although this is not constant and I have also experienced palpatations although these thankfully have passed for the time being.

          I am extremely anxious as if my thyroid test has come back as normal what else could this be?

          Has anyone any thoughts.

          Your comments would be greatly appreciated.

          Steve_M
            Post count: 2

            Thanks for your comments and good wishes.

            This thyroid business is a real pain in the butt as well as everywhere else!

            On a serious note however could anyone tell me if a bad cold or the flu can trigger a graves attack?

            I was feeling relatively ok up to a few weeks ago and then I was hit with a bad cough and a cold which went on for about a month in total, it also coinsided with my doctor dropping my carbimazole dosage.

            Any thoughts or experiences regarding this will be much appreciated.

            All the best.

            Ski
              Post count: 1569

              Absolutely Steve ~ remember, the antibodies are the thing that cause us trouble. When our immune system is stimulated from a disease we’re trying to fight off (cold, flu, infection), it stimulates all the antibodies, not just the "good" ones, and so we can experience an elevation of symptoms. (The same is true of stress, by the way, since that also stimulates the immune response.) Elevating your carbimazole sounds like a rational response. Good thing you’re well taken care of!

              SO TRUE, pain in the everything, Graves’. <img decoding=” title=”Very Happy” /> Keeping our sense of humor is essential….

              James
                Post count: 115
                Steve M wrote:Thanks for your comments and good wishes.

                This thyroid business is a real pain in the butt as well as everywhere else!

                On a serious note however could anyone tell me if a bad cold or the flu can trigger a graves attack?

                I was feeling relatively ok up to a few weeks ago and then I was hit with a bad cough and a cold which went on for about a month in total, it also coinsided with my doctor dropping my carbimazole dosage.

                Any thoughts or experiences regarding this will be much appreciated.

                All the best.

                Steve,

                You asked for personal experiences concerning coming off of a cold or flu and the possibility of relapsing.

                YES, this did happen to me a number of years ago. It was the type of cold that seemed to last forever and then all of a sudden just cleared up, almost like overnight. With the ramp up of the immune system, I ended up relapsing . . felt my throat tighten and hyper symptoms came on quite suddenly. I started another regiment of Methimazole for about 3 or 4 months. Good news is that I could wean off of the ATD fairly quickly after that. One other word of warning. Try to avoid supplements that boast immune boosting properties. I think that was what did me in the first time. Chicken soup (low sodium with non-iodized salt), lots of fluids and rest . . . the good old fashioned way to treat a cold is the best I have found. Interestingly enough, I never had a problem taking vitamin C.

                The immune system is a very complex system and difficult for even the most highly trained professionals to understand. You can become very much in tune with your body just from experience; and get to know what your potential triggers can be and how to avoid them, although realistically certain things are next to impossible to avoid. What we put into our bodies (in large part) is something that we CAN control, and I have personally found this has had a lot to do with my overall immune system health.

                Best regards,

                James

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