Is this normal?

[jackson2348]

Hi everyone, I've been lurking and getting information here for a couple of months. I have a question I've not seen addressed.

Some background- 42 yo female, diagnosed with GD 10/09, RAI 11/20/09. Had a good 2-3 weeks of dumping around Christmas/New years, was pretty miserable, but got better. Pretty sure I've gone hypo now. Tired, cold, and have gained abt 10-12 lbs in the last 2 weeks (!!!!!!). I go for bloodwork tomorrow, so we'll know for sure.

My eyes had not been involved, but the last couple of weeks they have been really dry. When I wake up in the morning, they are so swolen(swollen? neither looked right.) it looks like I went to bed crying. They hurt and are dry for the day. I am using a hot compress on them in the mornings, and eye drops as neded. Is this due to the Graves? or the hypo? should it go away once I get on synthroid?

Also are headaches a hypo thing? have has a terrible one almost every day, didn't know if it might be connected to the eyes or not.

Thanks for any info you can give me, and I appreciate the time you all put into this to get information out there!

[Andros]

Originally Posted by jackson2348

Hi everyone, I've been lurking and getting information here for a couple of months. I have a question I've not seen addressed.

Some background- 42 yo female, diagnosed with GD 10/09, RAI 11/20/09. Had a good 2-3 weeks of dumping around Christmas/New years, was pretty miserable, but got better. Pretty sure I've gone hypo now. Tired, cold, and have gained abt 10-12 lbs in the last 2 weeks (!!!!!!). I go for bloodwork tomorrow, so we'll know for sure.

My eyes had not been involved, but the last couple of weeks they have been really dry. When I wake up in the morning, they are so swolen(swollen? neither looked right.) it looks like I went to bed crying. They hurt and are dry for the day. I am using a hot compress on them in the mornings, and eye drops as neded. Is this due to the Graves? or the hypo? should it go away once I get on synthroid?

Also are headaches a hypo thing? have has a terrible one almost every day, didn't know if it might be connected to the eyes or not.

Thanks for any info you can give me, and I appreciate the time you all put into this to get information out there!

Hi, Jackson. Well, it is not unusual for RAI to trigger eye involvement (GED) and I am sure you have read that here and there.

It surely sounds like that is what happened so I urge you to get to an Ophthalmologist to get an early intervention plan going.

Also, once you start thyroxine replacement, that should help but be aware of the fact that treating the thyroid in fact does little to treat the eyes if anything. It has now become a separate entity w/ different antibodies.

Graves’ Orbitopathy Activation after Radioactive Iodine Therapy with and without Steroid Prophylaxis.....................

http://jcem.endojournals.org/cgi/con...ract/94/9/3381

The headaches could be connected; I do know that was true in my case. You do have peri-orbital edema; or at least it sounds like it if you would care to look that up.

And statistics and experience have shown that cold packs (frozen pak of peas are excellent) are much more helpful than applying heat to the eyes. You may also wish to purchase some Lacrilube ointment to use by night and some Refresh (or similar) moisturizing drops only to use by day. Do NOT use Visine or anything like that as these things tend to make the eyes worse due to antihistamine in the product.

Please let us know how your blood work is and include the ranges for the results if you can. I am hopeful the doctor will start you on thyroxine replacement as well so we would all like to know about that as well.

[jackson2348]

Thanks, Andros. My endo did actually send me to an opthomologist at diagnosis, just to get a "baseline". So tomorrow I'll have my endo's offfice get me another appointment, since they can get me in quicker.

Looked up periorbital edema, one of the causes is hypothryoidism. It's all connected, isn't it? Will share results tomorrow. In the meantime, where I started:

11/17/09
TSH 0.00 (.34-4.82)
FT4 1.55 (.59-1.61)
FT3 3.8 (2.0-3.5)
thryo perox Ab 594.5 (<=10)
Thryo recept Ab 3.29 (<=1.75)

He did do an uptake scan, I don't have in front of me but the results were consistent with Graves

RAI 11/20/09

12/28/09
TSH 0.00 (.34-4.82)
FT4 2.70 (.59-1.61)

[Andros]

Originally Posted by jackson2348

Thanks, Andros. My endo did actually send me to an opthomologist at diagnosis, just to get a "baseline". So tomorrow I'll have my endo's offfice get me another appointment, since they can get me in quicker.

Looked up periorbital edema, one of the causes is hypothryoidism. It's all connected, isn't it? Will share results tomorrow. In the meantime, where I started:

11/17/09
TSH 0.00 (.34-4.82)
FT4 1.55 (.59-1.61)
FT3 3.8 (2.0-3.5)
thryo perox Ab 594.5 (<=10)
Thryo recept Ab 3.29 (<=1.75)

He did do an uptake scan, I don't have in front of me but the results were consistent with Graves

RAI 11/20/09

12/28/09
TSH 0.00 (.34-4.82)
FT4 2.70 (.59-1.61)

Wow! Undetectable TSH!! Holy cats! How are the headaches?

[jackson2348]

2/1/10

TSH 0.40 (0.34-4.82)
FT4 0.35 (0.59-1.61)

My endo said that he is confident I have become hypo, despite the TSH because the FT4 is about 1/8 what it was 5 weeks ago. Also the swelling in my eyes is quite noticeable, even after icing (or pea-ing!), and he said that's usually a dead giveaway. Said (as I knew) TSH lags. He started me on 100mcg Synthroid.

As far as the headaches, he said the swellling in my eyes is likely causing pressure and thus the headache. He wanted to wait and see on the opthomologist, to see if my eyes will settle back down as we get the meds titrated correctly. I'm inclined to agree, I'll see him back in 8 weeks, sooner if I feel the need.

[Andros]

Originally Posted by jackson2348

2/1/10

TSH 0.40 (0.34-4.82)
FT4 0.35 (0.59-1.61)

My endo said that he is confident I have become hypo, despite the TSH because the FT4 is about 1/8 what it was 5 weeks ago. Also the swelling in my eyes is quite noticeable, even after icing (or pea-ing!), and he said that's usually a dead giveaway. Said (as I knew) TSH lags. He started me on 100mcg Synthroid.

As far as the headaches, he said the swellling in my eyes is likely causing pressure and thus the headache. He wanted to wait and see on the opthomologist, to see if my eyes will settle back down as we get the meds titrated correctly. I'm inclined to agree, I'll see him back in 8 weeks, sooner if I feel the need.

Absolutely; there is a lag time. The TSH does not always move when the FREES do and vice versa. So few realize this.

My ophthalmologist always did tell me that he could only do so much if we could not find a doctor to titrate my thyroxine meds correctly. It was he who sent me to the terrific doctor I have now and have been seeing for about 14 years now. Holy cats. That was a long time ago.

Sounds like you have a terrific endo.

Please let us know what the ophthalmologist has to say.

Also, sleeping with your head elevated helps. Put something to raise your bed or your mattress.

[jackson2348]

latest update.

I go back to the endo on Friday. I *think* I am undermedicated, on 100 mcg of Synthroid. My weight gain has leveled off, but I still have a lot of swelling in my eyes. Also I have been very tired and depressed. But, Some days I still feel hyper, some are way hypo. I am anxious to see what the labs say. I know we know our bodies best, but I just feel like it's such a roller coaster, I'm not sure where I am. I'm also pretty sure my husband and children are ready for me to get back to normal

Thanks for reading. It's so nice to be able to vent to people who understand.

[Andros]

Originally Posted by jackson2348

latest update.

I go back to the endo on Friday. I *think* I am undermedicated, on 100 mcg of Synthroid. My weight gain has leveled off, but I still have a lot of swelling in my eyes. Also I have been very tired and depressed. But, Some days I still feel hyper, some are way hypo. I am anxious to see what the labs say. I know we know our bodies best, but I just feel like it's such a roller coaster, I'm not sure where I am. I'm also pretty sure my husband and children are ready for me to get back to normal

Thanks for reading. It's so nice to be able to vent to people who understand.

And I think we will be anxious to see your lab results and ranges too!! We do need the ranges as different labs use different ranges.

You really sound like you are doing a whole lot better and I am glad of it. I hope the doc can get your thyroxine on track so you can really start to heal.

Most of us w/Graves' don't convert T4 to T3 very well so somewhere along the line, I do hope the doc will run FT3. It is too early in the game but in the next few months it will be a concern if you don't feel a whole lot better.