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 ..

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  • Posted

    Same here two years now normal blood results but goiter and noudle on one side like Shirley pain in thyroid SOE and pain in same side ear and head
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  • Posted

    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. 

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    • Posted

      Hi thanks for your reply. .your history sounds similar i started on 15 mgs and they gradually raised it to 30 mgs for 8 months then reduced it by 5mgs per month..the endos said i have graves but hes also mentioned thyroiditis maybe theese are the same thing im not sure..ive also recently developed vittilligo ..If the gps  said we understand but theres nothing we can do as were not specialists id understand but its the you cant possibly have the same symptoms as your thyroid function tests say your within range bit i cant comprehend.. i said to the gp today do i have to accept that this illness has changed me for ever ie my personality-tolerance levels-anxiety perception-etc and she looked at me as if i was mad
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    • Posted

      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. 

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    • Posted

      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

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  • Posted

    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.

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  • Posted

    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

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  • Posted

    Boy, that sounds like me, and I want to cry. I know exactly where you are coming from. There are many wonderful people on this site and it does help. My first appointment with the Endocrinologist was 4 months, and I thought I would get help, but all that happened was him telling me what I already knew. I got no advice as to what I should eat, or not. Seriously when I see him again, which was scheduled for 2 months later, all I got was the results of my labs. As a retired nurse I found 3 out of 4 to be off the charts.  God bless and I hope you get the help you need.
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