[WWWI2]

#1059721

Normal thyroid levels until 10/10. Diagnosed and started treatment for Graves’ 8/12. Was hyperT and then swung HypoT over the last 4 months. As of yesterday 7 months after starting treatment, per the most recent labs, levels finally within the normal range (still waiting for the actual numbers).
I am on block and replace ie 10 mg Meth and .1 mg Levothyroxine.

The nurse did say it could still take up to 4 weeks more to feel the full effects of moving into the normal range, although she acknowledged that finding the “sweet spot” within the normal range can be tricky. However, while I don’t feel as horrible as I did during full hyperT or HypoT, my body still aches a lot and I’m always tired.

I’m beginning to wonder if by simply having this disease, even tho it’s being treated, I’m always going to feel under par.

I keep a clean diet, my exercise is fairly limited by what my body can handle at this point, I’m also limited on what kinds of suppliments I can take as a result of an IBD. Is there anything I can do on my side to improve my condition that I may not have considered. I’m distressed to think that this is the best it can get.

Thanks in advance for any ideas or suggestions!

WWWI

[Kimberly]

#1177046

Hello – I would wait to see what your actual labs look like. Keep in mind that if your T3/T4 are normal – but scraping the bottom of the barrel of the “normal” range – that might be the reason for your symptoms. Also, as the nurse said, it can take some time for your body to recover from being in a hypo state.

There has been some research done on Hashimoto’s thyroiditis showing that patients can still be symptomatic despite “normal” levels, but I have not seen a similar study on Graves’.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.ncbi.nlm.nih.gov/pubmed/21186954

If you are still symptomatic once your levels get to the point where they are both normal and stable…it might be worth visiting your general practitioner for a physical *just* to rule out whether any other issues might be affecting your quality of life. You deserve to get some answers!

[catstuart7]

#1177047

I worry about the same thing – I got hypo and am still in the lower part of the normal range and I have felt worse from that than I ever did being hyper. People tell me that if I can get my FT4 and FT3 higher that it will be so much better, but it’s just such a slow process of months of making changes, doing labs, making more changes. I begin to see why for many the option of just getting it out surgery or RAI is appealing. Still I don’t want to give up….but need to feel better soon! I hope you do too!

[WWWI2]

#1177048

Kimberly, I’m trying to have more patience and wait this out but some days… Thank you for the resources and suggestions. After the last few years I’m a little nervous about going to the doctor to check things out as each time I do I come away with additional diagnosis, Graves’ being the most recent. But you are right and better to know than not.

Cat – That brings up a question. If there is a problem feeling well in normal levels pre TT or RAI, how does one have confidence they can get them to a “good” place post? I do understand why getting it over could be appealing but I too am hoping to be in that 10-20 %. What fun this all is lol Sending you good thoughts on feeling well soon

WWWI

[catstuart7]

#1177049

WWWI2 wrote:

Cat – That brings up a question. If there is a problem feeling well in normal levels pre TT or RAI, how does one have confidence they can get them to a “good” place post? I do understand why getting it over could be appealing but I too am hoping to be in that 10-20 %. What fun this all is lol Sending you good thoughts on feeling well soon

WWWI

Thanks for the thoughts I hope you feel better soon too! Your question is a big part of why I’ve held back from a permanent solution. If you want to really make your head spin do some googling on Reverse T3 and T3 conversion problems. It seems like some people do fine on T4-only replacement hormone and that’s what most doctors do, but there is a subset that doesn’t. Sometimes they really struggle. And how do we know which group we’d fall into with no thyroid? There’s no way to know ahead of time! And even if you find the right doc, at any time they could move away or retire and you start over. There are advances in Europe like time-release T3 supplements that are very hard to get here. Sorry I’m really depressed today.

[ChristinaDe]

#1177050

WWW ~
I had this problem (and concern) pre-TT as well. All my labs were perfect on Tapazole, but I felt awful. With normal labs & atenolol, I did feel better in some ways. My tremor went away, I slept more, my heart rate slowed. But my anxiety worsened and I became depressed and although my heart wasn’t going too fast anymore, it was beating harder. I had no energy, felt very weak, and my body ached. I was already scheduled for a TT by then but had become very fearful that it (or even RAI) would be unable to make me feel better since normal labs didn’t seem to make a difference. In fact, my endocrinologist basically said that if I was still having symptoms while my labs were normal then it was NOT my thyroid causing them! So I got super depressed and started to wonder if this was it for me…started to wonder if I’d ever feel well again, started to wonder if something else was to blame – like maybe I was actually insane.

Ultimately I decided that I couldn’t live this way anymore, and had absolutely nothing more to lose. I had already quit doing anything that I didn’t have to do & was not really leaving the house so life had already stopped for me. I was just getting sicker and sicker anyway. There was nothing left to fix. We’d already fixed it! I went back & forth on surgery for 2 weeks. Made myself nuts.

Couldn’t stand the limbo anymore. Couldn’t stand thinking about it anymore, so I went forward with the surgery. And for me the relief was nearly immediate. Today I’m exactly 4 weeks post-op and I feel great. Not good. Great! It makes no sense. My labs were normal then, they’re normal now. But something changed in me when the thyroid came out. So now I wonder if abnormal labs were only one part of my problem at the beginning. I’ve read nothing that says this…but now I wonder if my diseased thyroid had somehow become toxic to me. Sounds crazy, I know. But I’ve seen a couple of other older posts where a person felt better after RAI or TT despite not having felt well with normal labs on ATDs. So I think maybe there is yet one more small subset of folks within the Graves’ community…those who don’t feel better despite good labs while the thyroid is in operation. Just one more thing I don’t understand about this disease…just is what it is…for me anyway.

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