[susan]

in reply to: Just diagnosed with TED… SCARED #1170089

Thank you so much, Kimberly! I have used a few moisturizing drops bu the one that keeps me most comfortable and for the longest amount of time is the extra strength moisturizing GEL drops from CVS(here on the East coast). I decided today to use them like 3-4 times a day instead of the twice daily I use them now. The dizzy unaligned vision happens when they are dry or tired. So I am going to make an appointment with the eye doctor but I may switch to a neuro opthamologist. Thanks again!

[susan]

in reply to: Just diagnosed with TED… SCARED #1170087

I am so glad I read these posts.. I have been dealing with the emotional and physical aspects of TED…I looked in the mirror one day and something was off. I had tearing eyes for awhile never connecting the dots. I had RAI last April and went to hypo in June.. I am stable on 100mg of Synthroid for the last two blood work ups. Now it’s all about my eyes. The eye doc says it is TED and the protrusion is not severe. I think I look surprised all the time and I am very self conscious. I have the pain, dryness( lubricating eye drops help a lot) and now my vision is weird. It is never blurry , more like unaligned…does that make sense..like dizzying…I have to go back to the eye doc in March but I am thinking of making an appt for now.. This is so distressing.. Reading your posts about it being ‘hot ‘ and ‘cold’ helped…I have already talked to the doc about cosmetic surgery to get rid of the swollen lids(he said he would do nothing for a year) but if I need decompression surgery I could do both. How do you know if you need decompression and does it make the bulging go away? I read somewhere that you still can have blurred vision? I can’t NOT see! Thanks…BTW love the new appearance!

[susan]

in reply to: Post RAI and Hypo #1061078

Dear Renee,
So sorry to hear about your mom. You both need to be there for each other. I will say in hindsight I rushed into RAi because the other two options were not made to sound appealing to me. (My old endo) I also was told afterwards is just a pill every day for the rest of your life and yes you will gain weight and thats it. I wasn’t told that sometimes I am so tired I must lay down or fall down(like today) or that the dizziness is weird and unexpected. I try really hard not to think of this disease as life altering but in reality it is. It is very slowly dawning on me.
As far as doctors are concerned I have had enough interactions with them to say that they are there to work for you and with you and if they don’t appeal to you on a level that satisfies you and meets your needs, there are many others out there that will. I asked an endo once about a blood test and the response i got was "That is for me to worry about , not you!." I left his practice. No hard feellings- he simply gave me the wrong answer. you must advocate for your own health. Be assertive -no need to be aggressive. From your story your best resource sounds like your daughter’s endo.
I also got very overwhelming from reading all the information available on GD and Hypo and had to step back from it all and just live my life. Every individual is different and their situation is different. Take care of yourself.
Bye,
Susan

[susan]

in reply to: Post RAI and Hypo #1061075

Hi Renee,
I have a very similar situation as you do and I have been on Synthroid for about three weeks. Only side effects is the weight gain that comes when I breathe in and out! ” title=”Wink” /> As well as the occational bouts of dizziness. I switched doctors and found this endcronologist that was honest and upfront. I had no problem with the last endo I had , but to him I was a patient first and a person second. This new endo asked me questions about the person I am and I instantly felt better. This disease needs to have the emotional component addressed by the physicians involved.
The new endo upped my dosage from 75mg to 100 mg and wants to see me in one month not six weeks.I will start that dose tomorrow. All this has taken a large weight( unfortunately not literally) off my shoulders; not feeling insignificant and unheard. This message board helps a lot. I also found a very good book called "The Thyroid Diet" by a hypo patient, Mary Shomom, that was also very straightforweard and real. Now I just have to stick with it.
The important thing to do is to empower yourself with knowledge and supportive people/professionals. Also if walking the dogs is all you can muster now then that is fine. Give yourself a break.
Good luck,
Susan

[susan]

in reply to: Newly diagnosed – took RAI today #1061409

Hi Gayle,
I was where you are now just a few short months ago. I felt a little soreness after RAI and the first day or so, alittle nauseous but within a week,the heart slowed down(I was on the contrtolled release betablocker-2 perday and sometimes 3!) and I have finally weaned myself off of them. I feel a weird feeling at the base of my throat when I yawn but I can live with it. My first set of labs one month post RAI were so good I was not considered hyper and NOT given synthroid. Took my next set of labs a few days ago and feel fine. The weight I lost when I was hyper came back(UGH-back to the dieting) and I am finally back at the gym after 3 months away.
This website saved my sanity. Knowing that people here "got" me, made an amazing difference in my outlook. Keep reading and be patient(I could use some of my own advice sometimes). I had a place that answered ALL my questions better than any doctor has and I am forever grateful. I am glad that you are so proactive and supported in your GD journey. Welcome!
~Susan

[susan]

in reply to: Itching #1061518

I also had severe itching. It preceded all my other symptoms and diagnosis. I was told it is a rare symptom and even though I had always moisturized I still itched and yes, it was at night as well. I also started taking Benedryl at night. The problem was when I had to get up in the morning, it was hard to get out of bed-especially if I took it after 10 PM. A friend suggested Allegra and it worked right away and I was fine in the morning.
Once I had RAI, 95 % of the itching stopped.Good luck!…Susan

[susan]

in reply to: I chose RAI Treatment #1061705

Hi,
Wanted to contribute my 2 cents. I also chose RAI and had my treatment about 4 wks ago. I was on TWO propanonlol a day and had a heart rate of 100. I had a little nausea a few days later , some neck pain and a bout of Thyroiditis since. I have felt hyper(even decaf effects you)and tired but when I went for my first set of labs all levels were normal. So I started to wean my self off the beta blockers(internist told me to) but I am having trouble doing that. I will not take beta blocker for one day and the next evenong I have the heart racing. Anyone know why this is? Otherwise I feel like myself again. Going to go back to the gym in about a week….want to work on walking alittle every day. I find the more I share my experience the more amazing Graves people I meet.
Hang in there Superdave…we are here with you……………..Susan

[susan]

in reply to: New and have many questions #1062177

Hi All,
One month post RAI and my first set of labs came back-NORMAL! TSH 2-65, T4 1.3, T3 2.7…and no script for synthroid!!!! Feeling great..Not one regret doing RAI….Don’t know what will happen with this 1 month from now…but hey, just for today! >>>>>>>>>>>>>>>>Susan ” title=”Very Happy” />

[susan]

in reply to: Post RAI Questions #1061801

Hi Renee, I was very happy to read your post because I had the same questions. I have been on Weight Watchers (my whole life) and recently since I have been hyper I lost 17 lbs. effortlessly , ate whatever and lost weight just by breathing!! LOL… Now in the last two weeks I have gained 4 lbs just as effortlessly! I know I can take it off when the endo lets me go back tothe gym but I am so bummed out. Also I have found lately I get soooo mad soo quickly and it is not at all like me. I have zero tolerance and patience where does this come from? Could GD have kicked it into gear? Has anyone heard of that? I hate being like that.
Thanks,
Susan

[susan]

in reply to: New and have many questions #1062176

Going to the doctor tomorrow…my neck hurts when I cough or yawn..probably Thyroiditis…at least I will get some labs done………It has been 2 weks post RAI… On the up side someone who hasn’t seen me in weeks said I looked better! Yay! This really is a day to day thing…finding I get angrier quiker…sooo not me! Overall feeline like myself. ” title=”Very Happy” />

[susan]

in reply to: New and have many questions #1062174

Hi Ski,
Thank you so much for the information. The last few days I feel a bit more tired than usual and remember this feeling from when I had Thyroiditis. My neck is swollen and sore and my voice is hoarse one day and the next day all clear!I am very grateful you let me in on the information and will look out for the things you said. I love the idea of a "symptom " journal to help the endo help me.Appt is the 24th. Having this time beforehand wets me focus on my symptoms. Not sure I get the part about monitoring the T4 and TSH.
I made an appt for an eye examine and the doc said there is a possibilty that the endo burned out just the right amount and I will be "normal." I love positive people….is it possible? The technician that did my uptake madea point of telling me(unprompted) how good my endo is at prescribing the best dose of RAI and that he is conserrvative…What do you think???

[susan]

in reply to: New and have many questions #1062172

Now that I am 10 days post RAI and 2 weeks till my endo wants to see me, I was wondering- after reading various posts…when do you "go hypo" and when does the endo put you on synthroid? I am on Propanolol (160mg) and saw my internist who said to start to wean off of that..instead of two pills a day, just one. I am a little more tired and my heartrate seems to have slowed down a lot. Am I hypo? Can you be hypo and still feel jittery? So much of this is confusing AND i am menopausal! ” title=”Confused” />

[susan]

in reply to: RAI #1061900

Hi Superdave.. I am 10 days post RAI and I want to say joining this message board made the difference for me. There are are many supportive contributors that have been in the same place you and I are in right now. That being said, RAI was a no brainer for me, even my internist said she would do RAI. I feel alittle more tired than usual so I take more care. I can get alittle more emotional than usual so I cry. But it is all good because my heart is not trying to jump out of my chest. I am on 160 mg of propranolol and on occasion, on doctor’s advice have taken an extra dose. I am no going to wean myself down to one a day and then off. Hang in there, Dave…come to the message board often- it gave me sanity….. ” title=”Cool” />

[susan]

in reply to: New and have many questions #1062170

An interesting thing happened yesterday- when I didn’t feel good, I stopped and rested. I put my health first! I came home from work and for the first time since I had RAI 1 week ago, I didn’t feel right. The last two days I had mental confusion(imagine looking at a class of students and drawing a blank on their names-ugh!) and suddenly felt my neck hurt and very drained. I canceled my plans and put the vocbulary tests, that needed to be marked , down. I am very proud of myself. I guess I have GD to thank for it=forcing me to be my own champion.. I woke up this morning after 9 hours of rest and feel ready to take on the day! How about that?!!! Oddly enough I credit this site in helping me by being part of a community of people in the same boat as I am! Thanks!

[susan]

in reply to: vitamin suggestions #1061948

Thank so much for the information. I had planned on calling my doctor this coming week.

[Author]

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