[mackettric]

#1018485

I have Graves Disease and am one year post RAI, only in the last 4 months have I been stabilized on synthroid. I was feeling way better, starting to be able to take better care of myself, losing weight, starting to see the light at the end of the tunnel, then I started feeling extremely tired. I thought I was going hypo again. I can’t see my endo for a while, I went to get a thyroid test on my own, wasn’t expecting the results. My TSH is back down to .08 after being stable at 1 for at least a few months. And my FT3 & FT4 are both really high.

I know I need to see my endo. But I’m getting a bit freaked that my levels are never going to get back to normal. Is this common for levels to fluctuate like this? It’s nowhere near my post RAI levels (my TSH levels were .003 before RAI and peaked around 40 when I went really hypo, so things have really been yo-yoing back and forth, but I was really hoping things had gotten balanced out).

[Bobbi]

#1065190

Please don’t panic and anticipate the worst. It is normal for there to be fluctuations from time to time in TSH and thyroid levels. Sometimes it can be caused by residual thyroid tissue left in the body. (RAI and surgery typically can leave a wee bit.) If there is any thyroid tissue left, it can be revved up by antibodies. At one point in time, when I had lost a lot of weight, my replacement level needed to be lowered. The thing is, changing replacement level is a simple fix. Don’t try it yourself, though. See your endo.

Wishing you good luck,

[mackettric]

#1065191

Thanks for the reply. I’ve made an appointment to see my endo, but it won’t be for a few weeks. ‘Til then, back on the ‘ol beta blockers. Good thing I kept them.

I’m just kinda disappointed. I was suppose only be seeing my endo every 6 months for maintenance. After being so sick for so long. (I had Graves for years and years until I was diagnosed), I’ve finally started to feel better, I’ve been being so good, eating well, exercising, losing weight (I’m one of those who gained a ton while hyperthyroid), so when I started feeling bad, I immediately thought I must have done something to interfere w/ my thyroid meds like my high fiber diet or vitamin were messing with absorption, something, not that I’m hyper again.

[enough3]

#1065192

I just posted on here a couple days ago about gaining a few lbs. I’m 7 months post RAI. I was thinking this past week that I was starting to go hypo and needing my synthyroid raised up….but ironically I found out this morning that I’m hyper…LOL I would have put money on me being hypo…instead it’s the other way around. I’m currently taking 88mcg…and will reduce it to 75mcg. Now…I’m just trying to figure where the weight is coming from? Under 1500 cals a day and working out…maybe…it is muscle?

Glad you are feeling better. Hyper isn’t nearly as bad after RAI..I barely notice it.

I guess are thyroids are still dying….

[elf]

#1065193

4.5 years after RAI, my TSH is showing "hyper"(<0.04 or so) but FT3 and FT4 are comfortably in the middle of their ranges. I am not allowing my Dr to lower my Synthroid in order of bringing my TSH up. Tried to lower to 88mcg from my current 100mcg and felt worse, more of hypo-ish, and got back to 100mcg. When you say you are hyper, please clarify if that means just TSH is low, or if free Ts are high as well. Don’t let Drs treat you on TSH alone. I spoke to post-RAI and hypo people, – and such thing as TSH not corresponding with free Ts does happen. In that case, it would be better if your Dr didn’t treat you on TSH alone, but on FT3 and FT4 as well, along with taking your feeling of well-being into consideration (if his efforts to elevate TSH results in your feeling worse, then your well-being should take precedence over him trying to fit a number into a range).

[mackettric]

#1065194

It’s not just my TSH that’s low, my FT3 is just over 7. My FT4 isn’t too out of wack at a little over 2.

I’m not sleeping well and starting to have more hyper symptoms, or at least recognizing them as hyper symptoms, but I had my blood tested because I was so tired, I thought I was hypo. I definitely do not like my TSH being like this. I was very happy when it was around 1. I’m on 137 of synthroid. My endo said to stay on that until I can get in to see him, take the beta blockers ‘cos my heart rate’s back up to 120. My endo just goes on TSH and T4, he won’t look at any of the FT3 or FT4 numbers anyways.

[mackettric]

#1065195

enough3 wrote:I just posted on here a couple days ago about gaining a few lbs. I’m 7 months post RAI. I was thinking this past week that I was starting to go hypo and needing my synthyroid raised up….but ironically I found out this morning that I’m hyper…LOL I would have put money on me being hypo…instead it’s the other way around. I’m currently taking 88mcg…and will reduce it to 75mcg. Now…I’m just trying to figure where the weight is coming from? Under 1500 cals a day and working out…maybe…it is muscle? .

I gained a lot of weight post RAI, but went down a clothing size, so I’m pretty sure I just put back on the bone and muscle that I lost while I was hyper. But I had pretty severe muscle wasting. I didn’t see the doctor until I could barely get up the stairs and couldn’t lift a 10 pound dumbbell- that’s how weak I was. My legs would shake trying to support my weight. So I didn’t really mind putting back on about 20 pounds of bone and muscle, meant I could walk normally again. I know a lot of people complain about gaining weight post RAI, but it didn’t really bug me that much. I’m able to run upstairs now (well probably shouldn’t now with being hyper w/ the high heart rate, but I could).

I really cut my calories and started exercising and I was pretty easily losing 3 pounds a week for the last 2 months. I was feeling really proud of myself, since I’ve never been this heavy in my life, but then the weight loss stalled out and I got really tired. I was so convinced I was hypo. You’d think if you’re hyper, it’d be easier to lose weight, but perhaps not sleeping well, the added stress on your system, maybe it makes your body want to hold on to energy more, not burn calories? If you’re hyper, your body knows it’s sick and doesn’t want to burn fat and diet.

[Author]

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