[Anonymous]

#1020159

Hope everyone is doing well (for the most part). This is my first summer (post RAI) that I wasn’t hyper or downright mad at the world and well I’m noticing another symptom. The heat is here to stay for the summer and I can’t be out in it. I am absolutely exhausted and dont tolerate it like I’ve always done in the past. Is this normal or has anyone else not been able to tolerate the heat? I love summer (versus all the the blizzards we had this past winter) and want to enjoy it but it literally wipes me out. Is there anything that can be done?

Ok another question that may or may not be Graves’ related. My upper eyelids are starting to swell and not sure if this is Graves’ related or just allergies (which I’ve never had this bad until this year). I haven’t had TEDs so I can’t relate to anyone who does have it but it has me concerned. My eyelids are starting to droop when the swelling goes down.

Thanks for all your help and kindness
Kim

[Anonymous]

#1076173

If it has been a while since you had your TSH levels checked, Kim, you might want to call your doctor and ask whether it might be a good idea to check your thyroid levels. There can be lots of reasons for the eyes to swell, but one of them is hypo levels of thyroid hormone.

Soft tissue swelling about the eyes is relatively common among us. There are things that you can do to minimize it. If it is most pronounced in the morning, you can put lifts under the head of your bed so that your bed is slightly tilted. (Do NOT put more pillows under your head to achieve the same thing: you can cause back discomfort that way.) By keeping the head elevated above the feet (with lifts under the head of the bed) the soft tissue around the eyes does not swell as much.

You can keep small plastic zip-lock type bags filled with frozen peas in your freezer, and use them as eye compresses. The peas tend to fit around the eyes. By keeping them in their own bags, you avoid accidentally eating something that has been thawed and frozen over time.

I hope this helps. If the eye swelling continues, though, I would get things checked out — both by your endo and your ophthamologist.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1076174

Thanks Bobbi for responding. I’ve heard about TEDs and the symptoms and it didn’t seem like the swelling around the eyes was that so I didnt know what to think. Is the swelling around my eyes Graves’ related? I do have my 6 week appointment with my endo coming up the 17th of July and may move that up a little as I think my Synthroid dose needs to be adjusted yet again. Speaking of medication, I’ve had it adjusted twice already and it hasn’t been 6 months. Is this normal? My energy level feels great on the new dosage and then I start to get tired again. I am back to taking naps during the day and that gets tough at work but my weekends I’m absolutely exhausted. Work is demanding (not physical, just mentally and time-wise demanding).
Kim

[Anonymous]

#1076175

Hi, Kim:

Well, there’s absolutely no way that I — or anyone online — can tell you what is causing the swelling around your eyes. Is it Graves’ related? It could be. It also might not be. Only your doctor can say for sure — or at least give the best guess.

As for changing the dose of replacement hormone: my dose changed every three to six months for the first six years. Having said that, please do not think that I felt lousy for that long. I felt fine almost all of that time. But adjustments needed to be made, both up and down. There can be at least two reasons for making the adjustments. First — the RAI can cause thyroid cell destruction for months. Patients who need a second RAI usually have to wait about six months for their doctors to be sure that the second treatment is really needed.

The second reason for needing adjustments has to do with the nature of the disease — i.e. autoimmunity. The antibodies are not affected by any of the treatment options available to us. And the antibodies will continue to attack any remaining thyroid tissue. There usually is thyroid tissue left after RAI or surgery. So, the antibodies continue to have a target — just, hopefully, a small enough target that they cannot make us ill again. It is thought that the antibody attack will eventually destroy thyroid cells, over time, and as that happens we will need more replacement hormone (perhaps). Antibody attack could also cause you to need an downward adjustment in your meds — at least theoretically.

In other words, it is possible to need replacement hormone dose adjustments over time. It’s a reasonably easy “fix” and, typically, once we are on replacement, the adjustments are minor and we do not necessarily even know that we need one (i.e. we “feel” fine). But especially at first, you can expect dose adjustments.

I hope this explanation helps.
Bobbi — NGDF Online Facilitator

[Anonymous]

#1076176

Again, Bobbi, thanks for your reply. Just dont know much about anything I’m going through and (well you already are aware of this) people hear so much blamed on RAI that I wasn’t sure if it was an after effect etc. I had my RAI done March 3rd and I had an ultrasound done on my thyroid late May and it is totally gone so I figured I would need adjustments, just didn’t know there were going to be so many adjustments. I guess it is true EVERYONE is different in their reaction to all diseases and the treatments offered. I will ask my endo about my eyes as my allergist/internist said it wasn’t allergies like we thought. If he isn’t sure, then it’s off to my opthalmologist to find out what is up. Something is affecting my vision also as I used to have 20/20 (right after the RAI) and it was worse before I had RAI – go figure that one.

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