[cheermom60]

#1018500

I was here a few years ago when I was diagnosed with Graves Disease and elected RAI as my treatment (had RAI about 4 years ago). I’ve been on Synthroid ever since with my dosage being adjust about every 6 weeks for the past 3 years. I lost all the weight I had gained after the RAI (92 lbs) and ever since this past December, I’m slowly putting the weight on (so far 30 lbs). Its frustrating as I’ve had every test for my thyroid (even the fasting) and they ALL show I was hyper and the doctor continued to lower my Syntroid with the last dosage being 100mcg – in which the blood tests revealed my levels were in the middle of the range (TSH, T4, T3). How the heck can I be gaining weight when I exercise regularly, I eat extremely healthy than before RAI, am back to being extremely exhausted, I am extremely tired but have trouble falling asleep, I wake up in the morning worse off, I now feel like i"m back in my fog, I get bouts of dizziness, my hair is falling out again and breaking a lot, back to not handling stress at all, my libido is back to null (my poor hubby) and I’m always cold (it was almost 100 deg here and I was comfortable and everyone else was sweating??? What now can be wrong with me as all my other blood work came back with extremely great cholesterol level, heart rate was excellent, kidneys and liver alright, not diabetic, etc. Plus my irritability towards other (unfortunately its my husband since hes around) has really gotten worse.

[Kimberly]

#1065305

Hello – Someone who has been through RAI might have some more specific advice, but in the meantime, here are a couple of thoughts…

It sounds like you are already very in tune with your symptoms, but if you can keep a written symptom diary, this might help facilitate a better discussion with your doctor. Suggestions of items to track include hours you are sleeping at night, heart rate, weight, and whether you get out of breath from activities like waking up the stairs.

It *could* be that after all this time, your body is still healing from the time when you were hypER. Still, you want a doctor who is willing to listen and work with you if you are not feeling well. As you know, our relationship with an endo or other doctor is a long-term one…so you definitely want a doc that you are comfortable with.

Also, keep in mind that the "normal" range is fairly wide…so while your labs might be "normal", it’s possible that they are not OPTIMAL for you. Some people do feel better at the upper end of the range, others in the middle. If you can connect the dots between your symptom diary and your levels over time, this might give you some insight as to what is going on.

Best of luck!

[snelsen]

#1065306

Hi Cheermom!
Your symptoms are music (not really at all,) for me to read. Why? Because your story reflects mine. My TSH has been suppressed for a long time.Slow pulse, (52-58),felt great, right weight, lots (but too much, just normal) of energy, libido typical for my age. Regular appetite, love to cook, eat moderately and healthily.

WELL, I caved in to reducing my Synthroid, very slowly, over the past year, from 150mcg to 75mcg…until five days ago, when I said ENOUGH! I have been pathologically COLD beyond reason, went to Florida from Seattle in the past week, and work a coat at all times, even when it was 98 in Tally! pulse is @ 58-62, sluggish, little more irritable,poor sleep now at night, wanting to go to bed, partly to get warm, partly cause I felt soooo sluggish! GI system all screwed up from top to bottom. My TSH is still suppressed, T4 is fine, and I don’t care anymore. I want my life back. Fortunately, I have an endocrinologist who agrees to slowly get me back to a feel-like-a human back-to-myself life. So we are now slowly increasing my Synthroid to 100mcg. I have done it all, with each decrease of hormone I felt worse. Also took Cytomel, which I don’t think makes a lick of difference, but I asked for it, and don’t want to risk having less energy than I do.
I know I am not a role model, but I don’t care what the TSH says anymore. It has not budged from .002-.006 over a year, with Synthroid range of 150-75mcg. Everything else about me is fine (except TED, which is awful.)
Ok, I have vented and whined. I sure hope you get things figured out.
Is you endo willling to increase your dose? that is all I can think of right now.
There are the numbers…and there is the person!
Shirley

[cheermom60]

#1065307

Thank you both for your reply. Yes, I’ve been keeping somewhat of a journal as this whole ordeal has been a huge roller coaster and I’m so wanting to get off this ride. I I actually was glad when my physician lowered my meds from 175mcg to 125mcg at first, then I started getting the anxiety feeling (I feel that way when hyper) and cant sit still feeling and we did the blood work again. He lowered it to 112mcg. Then 1 month later had to lower it yet again. I think the stress of life is making my life miserable. I definitely dont handle stress like I used to and this morning I about jumped out of my vehicle because some guy wouldnt get off my tail end (and I was already going 75 in a 65) and ended up shaking from the stress, then crying. I’m always edgy, and ready to pounce when needed and thats not who I am and am sadden when my sweet hubby of only 4 months tries so hard to calm me down. So does having Graves mean I wont handle stress like I used to? If I was to lower it or eliminate it, I’d have to quit my job, walk away from putting my towhome on the market, get rid of my teenaged son (ha now thats a concept) and tell my neighbors to move – perfect world this would happen in but this isnt. I’m really hating life and really want the real ME to come back. I used to have so much fun in life and enjoy people. Now I just feel like I dont want anyone around. Geesh, re-reading this, I really need to get off the soap opera and stop it.

Kim

[Kimberly]

#1065308

Hi Kim – When our thyroid levels aren’t at an optimal point, our emotions do tend to be all over the map. And one other possibility you might explore with your doctor is whether you could be clinically depressed. Unbalanced hormone levels and clinical depression are *physical* problems that need to be appropriately treated – we can’t make them go away by “thinking happy thoughts”. Please don’t *add* to your stress by beating yourself up over the fact that your emotions are a little unpredictable right now!

With that said, there are some things that you can do to try and get your mind and body into a more relaxed state. Some patients find relief with yoga, tai chi, meditation, massage, or reiki. Also, just committing some time every day for activities that truly bring you joy can help. And sometimes we need to cancel obligations and/or distance ourselves from relationships that drain our energy, instead of giving us energy. (Sorry, can’t help you with the neighbors or the teenaged son! )

Also, I find that I tend to do a better job of managing stress if I can focus on living in the moment, rather than worrying about the future or being resentful about the past. Of course, making specific *plans* for the future is a good thing…but constantly *stressing* about it isn’t good for our mental or physical health. MUCH easier said than done…but it’s definitely worth the effort.

Take care – and keep us posted!

[elf]

#1065309

snelsen wrote: I know I am not a role model, but I don’t care what the TSH says anymore. It has not budged from .002-.006 over a year, with Synthroid range of 150-75mcg. Everything else about me is fine (except TED, which is awful.)

There are the numbers…and there is the person!
Shirley

Bingo! The same with me – don’t care that my TSH is 0.04, 4 years after RAI, – if my free Ts are in the range, and the main thing, I feel great. Have always been on 100mcg, it’s my magic number, tried to lower to 88 mcg once, – no more.

[Ski]

#1065310

Just make sure you’re vigilant about checking your bone density if your TSH remains suppressed, because bone loss is one thing you can’t undo later, and a suppressed TSH *usually* means your body is sensing that your thyroid hormone levels are too high. I realize there are rare aberrations, but articles have been written about "subclinical hyperthyroidism," which is described exactly this way (normal T3 and T4 levels, suppressed TSH), and patients who have been this way longterm still potentially suffer the consequences of full hyperthyroidism, though slower than they might do if all levels were out of range.

[Author]

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