all T tests low, rapid weight gain, lack of support

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long history but this.  went to reknowned facility for broken hip at age 59; in mth rapid weight loss of 28 pounds.  ortho at this facility referred me to endo.  endo found hypercalcemia.  admitted to hospital.  found Graves disease-early Dec 2017.  return to PCP, won't treat me because of being admitted to Mayo.  so endo now 4 hrs away.  was hyperthyroid with Graves.  Prescribed Tapazole (Methimazole) 40, could only take 30 due to vomiting.  Propanolol 40, made BP and pulse too low.  now on Tapazole 20 and Propanolol 20 for past mth.  OB/GYN ran blood work:  TSH, T3, T4 all well below normal.  tired.  irritable. crying often  OB says now hypothyroid and being overtreated.  waiting for endo. response who is angry OB ran tests.  no one has said anything about Carnitine, which I will check out.  what do these test results mean   T3 and T4 were normal 4 weeks ago after 6 weeks on tapazole.  still unsure whether to have surgery or RAI.  Endo wanted thyroid stable first.  Thank you for your time.

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  • Posted

    yikes, I forgot to add that I have gained 11 pounds in 4 days.  my alkaline phosphatase is greatly elevated which I read is common with Graves; with no other liver tests abnormal
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    • Posted

      Hi, while being hyperthyroid I was prescribed propranolol. It lowered my heart rate too much and I started to retain water. 11 pounds in a few days is a lot. Are your lower legs swollen?
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    • Posted

      Yes. Started 3 days ago.  Only on 20 propanol.  Heart rate in 70’s. BP systolic slightly elevated sometimes at night.   
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    • Posted

      To reduce the swelling, I tried to keep my legs elevated as much time as possible. For me, the swelling was worse during the evening hours. You could try to form a 'ring' by touching both index fingers and both thumbs. While keeping your leg slightly elevated move the 'ring' tightly along your lower leg starting from the toes. This kind of massage feels good as it relieves some of the pressure. It's easier if someone else does it for you. 

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    • Posted

      you are awesome!  thank you   my right ankle, foot and leg are the worst.  I am recuperating from a fractured hip due to the osteoporosis due to the undiagnosed hyperthyroidism.  yikes!!!!
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  • Posted

    For myself, when I was diagnosed with Graves, I was determined I was not going to have my thyroid destroyed even though Endos recommended RAI or surgery.  That's just the way I feel about my body.  I have refused hysterectomies for the same reason and survived quite well keeping my uterus and I thought I could also keep my thyroid and I have.  The symptoms of hyperthyroidism are kind of overwhelming so I made it my choice to learn everything I could about my thyroid and this disease.  Here is what I learned for myself.  Emotional stress played a big part in my getting this disease, I believe.  I took the meds, Tapazole at 10 mg and as my values were not too high above normal, this dosage normalized my Free T3 and Free T4 but my TSH remained at 0 for 2 years.  I learned that hyperthyroid patients lose a lot of vitamins, minerals and amino acids from their bodies when running hyperthyroid and these have to be replaced to normalize all my values.  So I came across a research article on the use of Regular L-carnitine and hyperthyroid patients and I asked my boss who was a genetic metabolic specialist (and has used carnitine for some of the diseases he treats) about it and he said, "well it won't hurt you", so I took the suggested dosage and for the first time in two years, my TSH began to rise.  Then I added other supplements like vitamin D 1,000 IU per day (most hyperthyroid patients are deficient in vitamin D and this is a very important vitamin for good thyroid functioning).  I added other supplements as needed and my values  have normalized, my eyes have improved, although they did not bulge, they were often very dry and itchy.  I have maintained my levels with careful monitoring and making adjustments when necessary.  A lot of us on the Board have had this success but if you want it too it will require that you be willing to learn all about your disease and your lab test values and your body symptoms and take responsibility for how you treat it.  My Endo, like most doctors, knows nothing about supplements but when he saw the improvement in my results has worked in partnership with me by regular monitoring of my lab tests, taking responsibility for my meds dosage while I take responsibility for my supplements dosage.  If you are hypothyroid now, you will have to wean off your thyroid-blocking drug but if you want to get healthy, you need to do more.  I don't know why your Endo is angry that your OB did tests, but that's his problem.  You are fortunate that your OB did those tests.  

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