Levels ok but still got the symptoms
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Hi got diagnosed hyperthyroid 15 months ago had dramatic weight loss poor sleep/concentration anxious moody fits of temper got shortness of breath..got put on carbimazol was sent for rai but didnt have it due to complications with where i lived so was put down for surgery..in the meantime the meds worked the endo stopped my meds to see what happens and said he would see me again in 4 months ..that was 7 months ago and im still waiting for the appointment but theres a 4 month backlog..ive been off work sick but now ive been declared fit to work but im still getting most of the symptoms ie 3 hrs sleep per night short of breath anxious fits of temper but my gps say as my levels are ok i cant possibly have the same symptoms they say its depression..which i know is not the case ..meanwhile i called the specialist and his secretary told me that it was quite normal to still have the symptoms even though you tsh test was within range..has anyone else had this experience ..
1 like, 9 replies
shirley_38788 mabel58065
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Samy3 mabel58065
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Guest mabel58065
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Hi mabel58065, could you get a printout of all your blood tests? It will show you how your levels have varied over the last 15 months. How long ago did you have your last thyroid function test? Did they measure your FT4 and FT3 levels as well?
I have Graves' disease and got hyperthyroid again this January. I was on 30mg Carbimazole, then 20, then 5. Three weeks ago my endo suggested I stop taking antithyroid medication. After about a week I could feel that I am getting hyper again, palpitations, less sleep, etc. Now I take 5mg Carbimazole again.
I am in a similar situation regarding my follow up appointment. But at least my endo regularly sends me blood test forms and reports back after I had my test.
mabel58065 Guest
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Guest mabel58065
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Thyroid levels can change within days and even vary to some degree throughout the day. It can be disheartening to hear 'we are not specialists and there's nothing we can do'. Medics can do something, they can listen to the patient, record the symptoms for future reference, and take action.
If at all possible it would be good to get a second opinion, maybe even a private appointment with an endocrinologist consultant. At least your diagnosis and long-term outlook should be well established before you are rushed into RAI or surgery.
Samy3 mabel58065
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Hi Mable I was diagnosed two years ago with grave's disease treated abt two months with carbimazole then stopped completely first ultrasound at that time showed thyroiditis and now two years later another ultrasound showed thyroiditis again my new endo said she convinced that its hashimoto with graves antibodies so I'm like u swinging in between those symptoms my thyroid blood results are also normal but I have symptoms new endo testing all the antibodies for both hashimoto and graves with all the other vitamins
linda187 mabel58065
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I think it is always important to know the cause of your hyperthyroidism. You may have Graves or Hashimoto's or both or some other reason for your hyperthyroidism. If you have Graves or Hashimoto's, it is important to know your antibody levels after all your thyroid levels have normalized (TSH, Free T3 and Free T4). If your antibody levels are still out of range, I would not stop your drug. My Endo told me he does not take patients off of their drugs unless the antibodies have normalized. I think it is also important to get vitamin, mineral and amino acid levels checked because you lose a lot of these when running hyper and if not replaced, you won't feel as well as you could. It sure made a difference in my recovery. I was deficient in everything and felt much better when supplemented.
lesley10106 mabel58065
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I know exactly how you feel. Diagnosed with Graves disease in January . Put on Carbimazol and levels with normal range but still feel rough Been advised this is normal but it doesn't help I took early retirement and will not returning to work Good luck you are not alone in this. My next goal is a partial thyroidectomy but that is a long way of
arlea13920 mabel58065
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