[harleychikus]

#1060712

Hi I’ve had graves for over 5 yrs now. I did the radioactive iodine. After a few yrs of struggle I got to were I was comfortable with my Levothyroxine dose. For the last 2 months I’ve been feeling terrible, so I went to my yearly dr apt (regular Dr) and my TSH is .026 (.078-3.35) and my T3 and T4 test (includes T4 Free) are normal. My dr I’ve only seen once (new Dr) has yet to call me and tell me my adjustment on my meds. I’m currently taken 150mcg of Levo daily. Since he has not called I have taken it upon myself to adjust my meds until I hear from him as I feeling terrible. I take an extra pill on Sunday. I think it my be the wrong way, I should decrease the dose I think. I have to do something until he finds the time to call me back. The last week, I can barely lift myself from a sitting position..help… I hope to hear from him soon but made another apt in 2 wks with a local dr known for his expertise in graves..any advise?

[Kimberly]

#1184281

Hello and welcome! We are fellow patients on this site, not doctors, so we do not recommend making dosing adjustments on your own.

You are obviously not feeling well, so I would keep calling the doctor’s office until you can get some direction on what to do. Be sure to let them know the exact symptoms you are experiencing. Thyroid hormone replacement stays in the body for a fairly long time (the “half life” is around 7-8 days), so once you make a dose change, it takes several weeks to find out whether that is the right dose for you. Tinkering around from day to day can actually make it more difficult to find the “sweet spot” in the long run.

Take care – and keep us posted!

[harleychikus]

#1184282

Yes, I moved my dr appt up, now scheduled for the 2 of March. Just a couple more weeks of feeling horrible. I didn’t think I would ever have to go back to the “spoon theory” but over the weekend, I did! I have come to the conclusion this new dr must not know to much about Graves or how to treat it. I am just confused as to why he hasn’t called to make an adjustment, or at the least tell me something, anything! Symptoms I am having; I have always had a difficult time explaining them. I have no (zero) strength. I’m so exhausted when doing the smallest tasks and my muscle are just jellolike. It even hurts to breathe at times. My heart was pounding last night as I was lying down. I weight 195 lbs and I’m 5’9″ tall, so not overly over weight for every task to be so impossible. I get about 3 hrs asleep a night. My job is very very stressful every day and I know that doesn’t help. To top it all off, my right eye has felt funny for the last month or so. I when to the eye dr last week and its starting to bulge, currently at 2cm. :0(. Again, I thought I had past that 2 yrs eye disease after treatment mark, only to be off on my meds and have it effect my eyes. I’m feeling sad and alone thru all this..Thanks for you help..

[harleychikus]

#1184283

Has anyone had any issues with Atorvastatin (Lipitor)? I have been taking it now for the last 3 months, I’m wondering if that has something to do with all this? I have been so regular with my levels for the last 3 yrs.. Until recently..

[Kimberly]

#1184284

Hello – If the docs have your labs, I would still push them for some direction on dosing, rather than waiting for another 2 weeks feeling awful!

I know of people (and not just with Graves’) who have experienced muscle pain and weakness on cholesterol-lowering meds. It’s definitely worth a discussion with your doc on the risks and benefits of taking the Lipitor.

[harleychikus]

#1184285

Hi, well my new Dr has taken me off the lipitor, lower my Levo dose and ordered testing for Polymyalgia Rheumatica for my muscle and joint pain. I will feel better soon..

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