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in reply to: PTU and egg quality #1181381

Of course, I agree with Kimberly to try to check this out. I have no idea.

But I suspect no doctor is going to “know,” either. They might have an opinion, and most likely they won’t. I am guessing that it might be difficult for you to find an answer, because it is likely that it has not been a topic for study or exploration, one way or the other. I am guessing it is an non-issue and a non-topic for study.

Is this something you are pondering about, or is there some evidenced based information that you have read? for this to be properly studied, there would need to be a large study population, two study groups at least, and it would need to be a longitudinal study over a long period of time.

I also had friends who got pregnant while on PTU. I don’t think anyone though anything about. The most important thing for mom and baby is to have appropriate labs.

I think the best advice is to have a good ob/gyn doc, as you would anyway, and to have a good neonatologist and/or pediatrician.
Best wishes with your planning!
Shirley

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in reply to: TT in 6 days, ready to get it over with! #1181395

I felt the very same way! Was SO glad to move forward with the surgery. And an added bonus post op, was feeling really good, but still on sick leave from work, so organized drawers, took walks, went out for dinner, and even took a small two day vacation away from all responsibilities!
You will do well, the best to you! Keep us posted.
Shirley

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in reply to: Orbital Decompression advice? #1181364

Hi, I think I wrote A LOT about my OD when I had it. Check the old posts in the search engine for my name. Really a blow by blow description. I had help for full week, and needed it. Sat upright most of the time, really helps with swelling. I found cold washcloth in a ziplock bag much more helpful than any ice pack of any kind…needs to be changed often. Also, just little gauze 2×2’s or 4×4’s directly on my eye, and/or over the dressing. If you stay upright, you will have MUCh less swelling. Swelling means pain. I put lots of blankets and pillows UNDER my mattress, so head of bed was about 45 degrees at least. Of course, got lousy sleep.

I agree with Holly. It might be difficult for you to present on Nov 4. That is about 17 days post op. But it is possible, especially if you don’t have to do lots and lots of prep to prepare. Hard to easel see after OD for at least a week, maybe more. There is no way I could have shopped, prepared meals, and bending over is a bad idea, anything that puts pressure on the eye.
How long is our presentation?

Best of the best to you. I had very little pain with an OD, and took only one pain pill to see what it was like. I think it is because I sacrificed sleep and comfort to remain upright. Not a lot energy for about a month.
Shirley
I wish the best of all things for Thursday.
Shirley

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in reply to: First symptoms of TED #1181354

Hi, I had an onset of TED around four years ago. Had no idea of anything. My eyes were dry and scratchy ( I live in Seattle, so not dry here.) My vision was changing, but was not sure how. Eyes seemed bigger, more cornea exposed. Eye doc said I needed new glasses. Made no difference. Pretty soon, as I was walking along, looking ahead, things seemed “wavy.” Not long after that, I had to blink a lot, readjust my eyes, when I looked up at the monitor (in a recovery room where I was working.) WEnt to another eye doc. THis is not about 6 months later. He did not really say anything, but prescribed more glasses (which I did not get.) and said, maybe you should see Dr. ………, down the hall. I went in the office, the doc happened to walk out to the desk (oculofacial surgeon) looked at me, said, “I think you have thyroid eye disease, are you here to make an appointment?” I had an orbital CT, there was a LOT of excess orbital fat in the orbit, and the eye muscles were very large (pushing my eyes out so they bulged.) By that time, I had intermittent double vision, later I had it all the time, in every direction, except looking down.
The good news for you is, that there are few people who have TED as severely as I had it.
Shirley

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in reply to: new to graves, treatment options #1181376

Hi Kristen, sounds like a good, solid well thought out decision. You are safer, too, to get less thyroid hormone circulating around. That is why, regardless of which treatment you ultimately choose, ATD’s are generally the first step. And you will feel better, tool
Shirley

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in reply to: I found a great endo! #1181243

You are soo sooo fortunate. Took me 5 endos to find a good one who gives a crap, and who “gets” Graves and TED.
Shirley
Super happy for you…

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in reply to: oh yeah NOT #1181237

Hi, your assessment, your concerns about the treatments are valid and well founded. My understandings about autoimmune diseases, is that if a person has one, there is some tendency to be susceptible to have another one. BUT I have no idea if this is a valid, evidence based, fact. It may be just an easy thing to say. All the genetic things are still things that not well understood.

I had a childhood friend with Universal Vitiligo, but as time passed, everyone got used to it, and she has moved on with her life. Teenage years were hardest. Have lost track of her now. I read the Mayo Clinic website for diagnosis (you doctor is probably right) and treatment. It is an ailment where lots of opportunists are out there to have you pay a lot of money for treatments that do not work, and are frequently dangerous. You are right, if you do use steroid ointment, you cannot “live” on it the rest of your life,and it comes with its’ own side effects.

Re weight, good job cutting down on junk food. Anyone I know, has had the most help, and succeeded in a a healthy way, with WW.
Shirley

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in reply to: helpful tip for TED dry eyes #1181223

Great idea! Thank you! For some reason Genteel gel stings my eyes something fierce, so I use lubricant only, and I kinda figured out to rub my eyelids a bit. It is so nice that you spelled it out. I am sure some people who read your post in the future, will be very grateful for your advice and hints.
Shirley

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in reply to: Suspecting Graves in Teenage Girl #1176347

I really understand, Jeanie! The day by day stuff is sooooo hard!

I think the best thing for you is to take it one day at a time. Labs next!
I hope they provide information that is helpful for her and for you.
She is probably the best judge of the ADD meds. Might ask her if they need to be tapered, or they can just be stopped. I don’t know. Glad she is off anti anxiety meds at this time. They usually need supervision to discontinue.
What year is she in college, does she have any idea of what she is interested in? It took my children a long time, and several majors, to figure it out!
Shirley

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in reply to: How Did Everyone know there was something Critically wrong with their health? #1181105

I was in my 20’s. I began to be very fussy and irritable, things bothered me that usually would not. HUGE appetite, ate all the time, but losing weight, rapid pulse, could feel heart pounding, finally noticed that I had tremors in my hands when I was reaching away from my body for something (like setting the table for dinner.) KNEW something was wrong, but all docs initially just told me i was all stressed out with a new child, working and marriage and all that stuff. FINALLY got someone to actually listen to me, listen to my heart rate. Got a diagnosis. Was on Tapezole which helped make me feel like me again. Then had a thyroidectomy, it would be my same choice today. I take Synthroid, doing well in the way I feel related to thyroid, but have a problem with my Thyroid labs, always say i am hyper. Developed atrial fibrillation in the last month, which is a definite risk factor with being hyper. But I am also in my 70’s which (age and female) are also desk factors.
Shirley
40 years later, I got TED and it was very severe. Did not even know about TEd.

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in reply to: Suspecting Graves in Teenage Girl #1176343

Hi jeanlerd,
WElcome, glad you are writing again. I have a few suggestions and thoughs for you to consider.

1.Would you consider maybe begin your own thread (new subject in our own words) so people will respond specifically to what you are writing.

2. You have mentioned ADD meds, but you did not mention thyroid labs or meds. Graves is a lifetime thing. Is she on thyroid replacement? I suggest, with new symptoms, or even the recurring ones, that a doctor she likes and trusts, you too, order thyroid labs, first thing. You also mentioned anti anxiety meds. They are also a med that needs careful monitoring.

3. Well, if I were on ADD meds, and I felt they made me feel worse, that is certainly something or further exploration.

5. Because of the meds she is on, a psychiatrist is not a bad idea. Also, a pyschiatric ARNP (nurse practitioner) is another good option. But first, they state of her thyroid needs to be assessed by any doctor who will order the labs, that is a good beginning. An endocrinologist if you can find one, that is challenging sometimes, especially one who is interested in Graves’. But they are out there. How about the docs who diagnosed her Graves’, arranged for the RAI when she was 11? There is a lot to know about her thyroid condition.

Hope this gives you your daughter some things to consider.
Is your daughter in college?
I do hope you find better answers than her current situation.
Graves’ first, I’m thinking.
Shirley

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in reply to: Just when you think……… #1181143

Hi Barbra,
you said it all! Money, time and heath. Keep the “other Washington” on your radar. Maybe you and your husband will add it to your list!

I’ll look forward to hearing from you, how you are feeling, with the addition of the extra med. Maybe it will help. I don’t recall, do you have any eye involvement? If so, I hope it is very mild.

Shirley

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in reply to: Just when you think……… #1181141

I want to join you at Benny’s , but then I decided both of you, and everyone else on the forum whom I feel I “know” so well now, should come to SEattle!
Then you can “do” the San Juan Islands, the Olympic Peninsula, the Atlantic ocean, the orca whales, and Mt. Rainier! I have good sleeping arrangements here, some are on the floor but they are really comfy!
Shirley

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in reply to: Deb’s TT 19th August #1181215

Hey Deb!
So nice to hear from you, thank you for summary. You sure had a big’un!
Glad it is all gone. Take care of yourself, and when it works for you,do write!
You have a busy life. Glad things are bumping along in a good way
Shirley

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in reply to: How many have had proptosis reverse naturally? #1181198

Quick reply cause sitting in eye doc exam room now
My eyes never improved in any way. But I am the severe TED exception not the rule. Thank goodness!

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