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in reply to: 8 month old baby, new Graves diagnosis, many questions! #1184365

To NewMom
1. No
2. I did get Graves when baby a few months old. No brainer for me, I wanted the TT. Wanted it DONE, and did not want to stop breast feeding.
3. Pretty much asked and answered. I wanted TT. Either my mom, my husband for a friend brought the baby to me int he hospital so I could continue to feed him myself. Pumped a few bottles before the surgery.
4. Absolutely yes. (But not RAI)
5. Doubt if there are any evidence based studies. Seems fairly irrelevant. Kimberly might know.
I did have two more children after 1st baby and TT, no issues, no problems.
6. Lucky friends! I was full of rage and hostility and impatience for EVERYONE! OF COURSE, husband around when the other people weren’t, i.e. at night. It is hell to be toxic and hyper. I would not wish it on anyone.
7. I don’t really my numbers anymore. Off the wall. I was sooooooo toxic (Graves hyper is also called toxic, or thyrotoxicosis. Whatever the name, it totally is awful in every way.
I take Synthroid now, after (at time I had it) partial thyroidectomy. But essentially the same, for the very small amount of thyroid tissue left burned out years and years ago.

Hope this is a bit helpful. I loved breastfeeding, and I love other people to do the laundry for me and clean the kitchen!
Shirley

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in reply to: Proptosis recurrence 3 years after OD #1184354

Well, I have been “hanging around” since 2008 And I see that I wrote “do writhe again.” So, duh, I meant, do write again!

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in reply to: Proptosis recurrence 3 years after OD #1184353

Holy cow, gatorgirly! We really ARE old timers, aren’t we?
Nice to hear from YOU, not so great about your news. And, in a sick sort of way, it is good news! Mucocele vs. more TED. Two not so great choices. I have take care of lots of folks with sinus surgery Goes ok, but not fun to not be able to breathe as well as you’d like to. Not a lot of pain, and I don’t hint they use packing anymore, which is a big plus. Do writhe again. I am trying to recall how long I’ve been on this site! Guess I know after I post this!
Mtfanthom, good to know you will be asking lots of questions! Definitely get an orbital CT.
Shirley

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in reply to: Anyone using Restasis for dry eye? #1184314

So, I stopped using Restates years ago.

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in reply to: Anyone using Restasis for dry eye? #1184313

I am glad you asked this question. I went through the same thing,had the same, experience, with Restates. As Liz said, it is very expensive. Not only that, I was told long time use is contraindicated. In addition, it hurt like hell when I put it in my eyes.

Dry and painful eyes are a BIG problem for. The non-preservative eye drops are super expensive, and work only ok. The best thing I have found, is also expensive, and I cannot find it in the stores, ordered it online.
It is called FreshKote, the company is Clear Solutions. I try to limit using it to one time a day, sometimes two when my eyes really hurt. A lot of my eye pain during the day, is because the inability of them to close when I sleep. I tape one eye closed with MEPITAC, a marvelous and also expensive tape you can order online. The other one, I gob up with ointment and drops,and sometimes it works,and sometimes the untaped eye really hurts in the morning…like today. One thing that helps me is to take a hot shower. The steam helps a lot.
The whole situation is very difficult and never ending.

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in reply to: 10+ pound “weight gain” since January 11??? #1184295

Well, this is a bit of a dumb answer, maybe, but…have you considered it might be the SCALES. Go to the drug store, see if weights are similar.

And, as Kimberly said, go back to the endo. This is not an embarassing thing, it is a mystery! Of course you want to be sure you are ok in all ways.
Shirley

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in reply to: Success Story (A Blast From the Past) #1184292

Sue and Flora!
How NICE to see a couple “old timers” on the forum! Glad you are both slugging along. Same with me. Still eye issues with right eye closing, and have to have sunglasses at the ready at all times. But manageable. As mentioned in this thread, I found Synthroid a better choice for me that a generic. Yep, as PattiMeg says, it is much more expensive .

Just a note today.
Shirley

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in reply to: Strabismus surgery…. #1184108

I found it exceedingly hard to WAIT for the strabismus surgery after my OD. But it is worth the wait, for then the measurements will be accurate. Although the strabismus surgery recovery is easier than OD, it has been my understanding from the experience of others, that double vision remained or recurred, resulting in repeating the surgery.

In my own experience, none of the “eye docs,” or TED docs, seemed to make any decisions, or even check my thyroid labs. I was the one who provided them. Perhaps this is because I had Graves’ so long ago,and they knew them.

Kimberly is a good source for knowing the recent thinking and research of how TED docs incorporate Graves’ labs (other than being hyper or hypo) into surgical decisions

As I have said in prior posts, I saw HOPE and happiness in the operating room, when they asked me to look at the wall, and I saw one of objects, rather than two!

Scanders, do you tape your eye closed when you sleep? If so, I have the best tape in the world for you to know about! It is called Mepitac.

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in reply to: Time is Running Out to Register – May 7th Mini-Conference at Shiley Eye Institute in San Diego! #1184273

may come. checking.

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in reply to: Largest eye muscles Dr. has seen in his 25yrs! #1184270

Agree with Liz and Kimberly. This sounds very concerning to me. The fact that you do not find in credible literature,or find it at ALL, should tell you to explore further.

Liz explained this very well, and this is similar to the kind od explanation and plan you should be hearing from an ophthalmic plastic surgeon and ENT doc.
I had both in the OR for my OD. These procedures MUST be done by docs wh do many of them.

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in reply to: First time poster, Graves’ diagnoses in November #1184258

Hi Dagny,
Yep. Figuring out the methimazole med can be tricky. If you develop hypo symptoms, which are overwhelming fatigue, possible surprise weight gain, plus all that Kimberly mentioned, feel sluggish, blah blah, it could mean you are getting too much ATD for YOU.
Sooner or later you get to that “sweet spot” and things and you feel kinda normal.

Re work-If you enjoy it, and need the pay, think about what YOU would like to do. Being bored is also hard on us.

Yoga-just do yoga that is gentle. As Kimberly mentioned, don’t do things that greatly increase your heart rate right now. It’s already increased

Re you question about infection, colds, etc. there are a couple VERY RARE side effects with the ATD. That is why you have labs drawn. I suggest you go along and live your world the way it is, with the caveat that you follow Kimberly’s advice,and do what you probably would do anyway. If you get a fever, know you are sick, get a complete lab panel (they always do more than thyroid studies at this time, and they should be doing a CBC, i.e. checking white and red blood cells. Please read this accurate reference by Mayo clinic. It is a matter of being informed, not to scare you. And a perfect conversation to have with your doc, asking about the very very rare occurrences that can happen when on ATD (anti thyroid drugs)

Here ya go!

http://www.mayoclinic.org/drugs-supplements/methimazole-oral-route/precautions/drg-20073004

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in reply to: New To GDATF – Eye Surgery(ies) #1184264

One thought for you to consider. See a neuro-opthalmologist, they are hard to get appointments with, but if you mention decreased vision and diminished (reason for an OD) they will scoot you in pretty fast. To do the eyelid procedure first, is not very logical, for your eye will be receded from where it is now, after the OD. It has to heal, then they eyelid procedure is done on a stable eye. The bigger procedure is the OD. My strabismus surgery was a piece of cake. And wonderful to not have double vision, which i did have.
Docs can help you with this, but if you are a candidate for OD, I think the do nothing option is a poor one for you Better to be in control of this, and then it will be “done.” If you wanted to wait until after the wedding, to have the strabismus (eyelid ) surgery, that is an option to discuss also. The big surgery is the OD, the small one is the eyelid.

I wanted to check in with you, I have a VERY early flight in the morning, so have to pack, (being sure to take sunglasses!) and get to bed.

Welcome, you will like everyone here,and it is a reliable place for you.
Shirley

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in reply to: First time poster, Graves’ diagnoses in November #1184255

Glad you found THIS forum. I was not a forum poster, either. But this site helped me stay a lot more sane than I would have been otherwise. Now, it is so nice to be able to tell you that, now that you have your diagnosis, your life will be much better fairly soon with the methimazole, and then you can take your time to think through the other stuff. Soon your heart rate, blood pressure and tremors will resolve. The caution to not exert yourself when your heart rate is so rapid anyway, is very wise. But this will soon change, and you will be back in normal zone. Yoga is great, it is slow (as opposed to cardio stuff) and very relaxing for many folks. So take it easy, then move on with it a part of your world.
Incidentally, I know you are established with an endo now, but the next time if you have as many symptoms as you had, call, tell’em what your heart rate and BP are, and do what you need to to do to get seen. They allow space in their books for these situations. Also, generally, anyone has to wait a long time for a new patient appt, cause they take a lot longer to get to know you at all. After that, you won’t have this kind of wait. AND, if you decided to get a 2nd opinion at any time, just do it. Docs don’t care.
Regarding your eyes, regarding Graves, I am so glad that with your diagnosis everything will fall into place much more easily and safely for you. And, you are right. this is not the ideal time to get pregnant

I have big TED eye issues, lots f’em. Most folks are not as severe as I was. All better now, with minor things like I need sunglasses in bright sunlight. Vision is fine. Step at a time, and so so so glad you decided to post, and even glad it snowed so you stayed home to decide to do it.
Shirley in Seattle

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in reply to: Atlanta, GA Naturopaths? Lyme/Bartonella/Graves’/Hashimotos help! #1184223

Proud of you! You have done a ton of work to take care of yourself. seems you are doing well with your N.D, keep it up. All of it!

I totally agree with you about doctors working together. My experience is that they don’t! said the cynic!

Shirley

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in reply to: Angry about T4 treatment – Big pharma witholding the truth! #1184235

My understand is that it works now and then for some people more favorably, but it is a complex topic, and does need the sticky that Kimberly is initiating.

Andrea. By you own statement, you have been on Synthroid for 30 years. Long time. So another provider suggested something different, which you have taken one month. Fine. See how that works for you. You will most likely need more than a month to reach that conclusion. I wish you well with whatever decisions you make.

The rest of your post is a problem for you having written it, and a testimony to incorrect information, which belongs to you, which is anecdotal, and not supported by evidenced based studies.

Big pharma is not influencing this wonderful forum. The rest of your post is rather inflammatory and not helpful to anyone.

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