Hi all- I am new to this forum and have been dealing with a thyroid diagnosis for about 8 months now (though I have been having symptoms for much longer). I have learned alot from reading other peoples stories of their journey on these boards and was hoping to share my story to see if anyone has any insight or advice.
I saw my PCP 8 months ago with symptoms of recent weight gain (+12 pounds), severe fatigue, cold- intolerance and thinning hair. She (and I) thought that my symptoms were consistent with hypothyroid disease. She ran lab tests which came back instead as HYPER-thyroid. She was very confused with the lab results given my symptoms and decided to refer me to an endocrinologist for further treatment.
APRIL 2017 : T3 Free= 6.7 (2.3-4.3) T4 Free= 2.5 (.8-1.8) TSH= 0.01 TPO=37 (<9) Thyroglobulin Ab= 4 (<1)
The endocrinologist diagnosed me with Graves disease (and later possibly Hashitoxicosis based on further antibody test results). He did not seem to care at all that I had no symptoms consistent with Hyper-thyroid and he wanted to start me on a Beta-blocker and Tapazole in order to reduce my thyroid levels. He also expressed that i needed to decide between my two options of either having my thyroid removed or having radioactive iodine. He thought I should make my decision soon given my age- I am a 32yo female who possibly wants to start a family in the near future he felt it was best to choose one of the options so that I could move on with having a family which would need to be delayed by about 1 year if I chose the radioactive iodine. He also told me to stop exercising and doing anything overly strenuous as I was at risk for thyroid storm given my labs and iodine uptake scan was very high.
JUNE 2017: T3 Free= 8.2 (2.3-4.3) T4 Free= 2.6 (.8-1.8) TSH=0.0006 TPO=74(<9) Thyroglob AB= 8(<1) TSI = 443% (0-139%)
SIMILAR RESULTS IN SEPT (do not have the numbers in front of me but basically consistent)
THYROID IODINE UPTAKE SCAN (SEPT)=
I expressed concern especially about the beta-blocker as my blood pressure and pulse have always run low- typical BP (96/68 p60). I was also worried that the Tapazole would make my fatugue, weight gain, cold intolerance ect worse and I decided not to start taking the medications. I discussed my concerns with my PCP who is an MD but also focuses on integrative medicine as well and she suggested instead that I try to make some changes in order to reduce my autoimmunity. She did sensitivity testing and started me on a strict gluten free/dairy free diet and also started me on high dose Vit-D, Vit-A, Fish oil and selenium supplements which I have been doing for the past 10 weeks. I have been feeling slightly better, but still have had pretty severe fatigue and continued weight gain.
Yesterday I had my follow up with the endocrinologist and I had in the meantime made the stressful decision that I was going to opt for the thyroid surgery instead of the radiation treatment. I was expecting my blood work to be similar to what it had been and for the endocrinologist to be angry when I told him that I had opted not to take the medications. However, to my surprise, my blood work somehow came back fairly normal T3/T4 with still low TSH. He is now saying that I do not need to take the medication or worry about the radiation/surgery option as he is saying I now have sub-clinical hyperthyroid disease.
NOV 2017: T3 Free= 3.0 (2.3-4.3) T4 Free= 1.43 (.8-1.8) TSH= 0.012 (.450-4.5)
So anyways- that is my story. Sorry that it is so long- but I wanted to give all the details. I am still confused as my symptoms have stayed the same throughout and my lab results (as well as my anxiety related to the whole situation) has been up and down and all over the place. I still feel pretty terrible, get constant headaches and am exhausted with no energy after work each day and the my endocrinologists new plan of doing nothing is frustrating. I would appreciate any advice or insight that anyone may have- or if anyone has had a similar situation. Thanks in advance!