[AL1491]

#1060071

My first post!

I was diagnosed with Graves ’ disease in the summer of 2011 and received radioactive iodine treatment in June of 2012. A few months after the treatment, I received a call from my Endocrinologist saying my hormone levels were very low, meaning I had become hypo. I was put on Levothyroxine 100 MCG and monitored for a few weeks; well my doctor was really bad about appointments. I would wait 2-3 hours to get in to see the doctor; I could not handle this so I contacted my primary care giver asking for advice. Well since I was only having blood tests monitored he offered to monitor my levels. I received a blood test and my levels were really high again, I had too much hormone (hyper), so he switched me down to 75 MCG. I recently received a blood test a few days ago and I am still hyper, my levels are too high. He said he would like me to stop taking my thyroid hormone all together and get a blood test in 6-8 weeks to see what exactly my thyroid is or isn’t producing. I am very fearful of this decision, I feel like this is taking a gamble with my body. I have felt better than when I was diagnosed with Graves, when my hormone medicine was switched to 75 MCG, my heart flutters stopped, which was my main concern after I started the medicine. I am so confused as to what to do, who to listen to and what exactly is right for me. I feel like this is just a lost cause and no one really knows what exactly to do. My Endocrinologist was a good doctor, if you could actually get back to see him. I am considering trying another doctor but this is all just so tiring. I have no idea what to do. I feel alone in this battle.

[Kimberly]

#1180118

Hello and welcome – what a frustrating situation! We are fellow patients here, not doctors, so we can’t tell you what to do in terms of dosing. However, anytime a doctor’s advice makes you uncomfortable, it’s a good idea to go back to that doctor and express your concerns. Be persistent until you get an answer that you are comfortable with. If your primary care doc isn’t able to answer these questions in a satisfactory way, perhaps he can get you a quicker appointment with your original endo or with a different one.

If you have gone hypER again, you definitely want to get this taken care of as soon as possible, as remaining in a hypER state can cause bone/muscle wasting. However, I certainly think you deserve an explanation that you are comfortable with before making such a drastic change.

Take care!

[Boomer]

#1180119

I agree with Kimberly. When in doubt press the professionals for more information.

I empathise with you very much. Frustration and “hurry up and wait” seem to go hand in hand with this darn disease.

I think your best bet is to press your doctor for more information, address your concerns, and keep pressing until you feel confident in the replies you receive.

I’m not qualified in offering any advice regarding dose, etc. but what your doctor is suggesting does not sound entirely unreasonable to me. I could be wrong but I almost feel like we might be better off on the hypo side of things rather than on the hyper side while trying to get things dialed-in correctly.

Maybe it would be a good idea to seek another endo rather than using your family doctor at this point? They can’t be great at everything- maybe a specialist is indeed the right way to go?

Well THAT was as clear a mud huh?

Welcome to the board and i hope you’ll stick around, hang tough, and keep up posted as to how thing progress.

Health to you and yours,

Boomer

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