[Anonymous]

#1020380

(Note: my treatment choice was RAI, but I will go through my experience as the welcoming letter asks for such). I originally had Hashimoto’s (underactive) thyroid for two years before it decided to “switch” to Grave’s disease and it was a gradual process of lowering dosages of synthroid until I wasn’t taking any at all, but my TSH levels were still high. I do recall taking atenolol during that time period, but as I look back (and as my current husband, then fiance and mother can attest) I was not myself and am hazy on much of the details of that 6 month period of lowering the synthroid to nothing. My mom claims, “this was my daughter who could do 6 things at once and you weren’t completing 1 task”. My husband and I both attribute it to postponing our previously scheduled wedding for 2 years (the symptoms started approx 10 mo before our original wedding date and 4 months out, when I still wasn’t myself and I had just finally been diagnosed, we both agreed to call it off – we are now happily married for 8 years, but I am so glad my 1st year of marriage wasn’t trying to get back to my old self!)

I had extreme heat intolerance, shortness of breath, rapid pulse rate (constant 120)fatigue (from restless sleep)no major loss of weight, but no gain. I felt like my 80 year old grandpa trying to get out of the car and I tried the “mind over matter” mentality but, of course that didn’t work. Once they finally got me off synthroid, they were able to diagnose “grave’s disease” and I choose an RAI treatment, with continued monitoring, they were able to switch me to maintaining my accurate synthroid dosage within a year or so and I pretty much have no thyroid left. I also found out after I was regulated that I lost a lot of muscle mass – I had a doctor tell me I should start swimming to help back trouble that developed so I could build up the muscle mass in my back, that my bones moved too easily – I played varsity volleyball, softball and was a cheerleader in HS and college and had lifted 130 lb girls in cheerleading – I had a strong back until this.

I don’t know if it took more time to diagnose because I had moved my Hashimoto’s care back to my PCP, but to this day, since going to my Endocrinologist for the Grave’s diagnosis and treatment, I continue to stay with the Endo. I did have rapid weight gain after the RAI (even with trying to watch it, as I was prepared for it to occur). I gained 30lbs and lost that 30lbs before my first pregnancy (it took 2 years to get it off – all weight loss is difficult with metabolism so tied to our thyroids). I gained 60lbs with my first pregnancy and got 40lbs of it off before my 2nd pregnancy. Gained 45lbs with the second pregnancy and so far have only lost 30lb of it, so total I still have 30lbs to go (our 2nd is only 6mo old, but I took the bull by the horns this time because it took me 3 years the first time after pregnancy to loose weight). I had no weight issues until my thyroid ups and downs beginning in my mid-20’s, so, yes, the weight loss can be done, but you have to be extra driven to make it happen. Please do make sure if you haven’t had children yet that your OB checks your TSH levels around the 5th month of pregnancy and again later, as you may need an increased dosage of synthroid while pregnant. ALSO, please make sure your hospital/pediatrician tests your newborn for any thyroid disease at birth – some states already include that in their newborn screenings, but some do not. Neither of our children had thyroid complications, but we do have a family history (also note that if a male has thyroid disease, his daughter is much more likely to have it, since it isn’t as common in men, my father has had a traditional underactive thyroid for 35+ years, but it didn’t show up for me until my 20’s)

I did not have noticeable bulging eyes, however, anytime I see a physician for the first time, they can see the slight change it made in my eyes and know before I tell them that I had Grave’s disease.

I am hard on myself and drive myself a lot anyway – but this definitely made me sit back and realize that I need to listen to my body and that I can’t do everything by myself. I still put myself through the paces and am back to doing more like 10 things at once. I work full-time in a marketing position and air travel 2-3 times/month for business and am also on several committees for work as well as serving on a board. I understand that everyone’s recovery is different, but after my RAI, I took off work (quit-sales) for 3 months and then was back full-time in a different position (within an office) for 3 years, but can’t stand being in an office – I like marketing, and switched and have been doing that now for over 6 years with no complications. I hope that may help someone and I am happy to answer any questions.

[Anonymous]

#1076976

Thank you for your post. I’m happy for you and that you are leading a well productive life. I am also, 8 years after RAI.

Diane B On-Line Facilitator

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