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Hi Jo!
I am very new to this site, but saw your post and thought I would share, as my situation seems similar, so you are not alone. I was initially diagnosed with subclinical hyper by my primary and went for additional testing to an endo. One endo wanted to start methimazole 5 mg QD based on my lab results (antibody level, but they have not said ‘Graves’ yet) and palpitations, and I got a second opinion. The second endo suggested 7.5 three times a week, but wanted to do the RAI uptake before making a final treatment recommendation (RAI uptake results are pending). Endo also suggested that it might come and go on its own without treatment – I am curious if anyone had this happen – reversing on its own?
A big factor for me – I am also peri-menopausal so symptoms are very hard to distinguish – sweating has been routine for 3 years.
I am wondering if peri-menopause can trigger Graves onset – anyone know?
Does anyone know how high the antibodies need to be before symptoms progress or they diagnose Graves?I am also going to an eye doc to have my eyes checked, but currently have no overt symptoms of eye disease, but I have had dry eyes for about 10 years so hard to say what it could be due to. A new baseline would be a plus.
I have found it hard to find one doctor that can really look at the whole picture rather than just treat one aspect of whatever it is I am dealing with, but I will keep getting opinions.
Here is my summary of results and symptoms.
– T3/T4 have been normal – T4 close to upper limit, T3 mid range
– TSH slowly dropped over 3 years to 0.01
– Thyroid Stimulating Immunoglobulins just over normal at 148 (normal is <140)
– Thyroglobulin is also high at 49.8 (upper 40.9)
– Thyroglobulin antibodies normal (<1)
– Thyroid peroxidase antibodies normal 4 (<9)
– Pending RAI Uptake test results– Palpitations started as soon as I found out the above results. I am on propranolol 10 q 8 h which has helped but I made need to increase the dose or go to every 6 hours because every now and then I still feel the palpitations – the endo prescribed metoprolol 25 twice a day, but I went to my cardiologist and she opted for propranolol first. I haven’t had any side effects to it.
– The choice of beta-blocker may have been different for my case – I have orthostasis (one episode resulted in a seizure 3 years ago – I am also thinking that has something to do with the hyperthyroid starting, also affected my tolerance to certain lights for a while) so beta blocking drugs were held until now, because they can lower blood pressure.
– Facial, chest and body sweating after I wake up. Has lessened in severity and frequency after starting the beta-blocker and I am also doing meditation so that might be helping, not sure.
– moderate anxiety for years, exacerbates with stress
– Tinnitus for >40 years (progressed to need for hearing aids at age 50)
– Sister with Graves (she opted for RAI); mother with goiter; 2 other siblings (brother and sister) with no thyroid issue
– Sister with autoimmune myastheniaI am very scared of the agranulocytosis reaction – I have had rare reactions to antibiotics (Cipro tendinopathy and neuropathy) and travel a good deal, so if it occurred I fear I would not be able to get help or else I would have to stop traveling which is a major lifestyle change (I know sounds like not traveling should be no big deal but it adds to the existing stress and I might not be able to visit my kids, etc.). RAI and surgery, though, seem drastic at this stage. I am debating which treatment route to take and am having bad anxiety over it all. I’m still on the search for accurate information.
I hope you get a second opinion and get some additional tests, it may help you decide how to move forward.
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