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  • barbra
    Participant
    Post count: 160

    Just got home from the Ophthalmologist and I am happy to say there is no eye involvement due to the Graves.
    I have dry eyes, even though they sometimes tear, and that’s why they sometimes crust up. The swollen eyelid may be from rubbing the eye while I’m sleeping. Now I have a nice supply of eye drops.
    He wants to see me again the end of November to make sure there is no Glaucoma. Oh, the joys of being old.

    One thing I wanted to mention: The addition of the Cytomel 5mcg twice a day, which I understand is T3, to the 25mcg of Levothyroxine made a world of difference seemingly from one day to the next. I’m only taking it for 2 weeks and tomorrow will be my last dose. I’m hoping that I am not going to slide back into those misery days.

    Had labs done yesterday, haven’t picked up the results yet, but my Levothyroxine has been upped to 75mcg and I’m starting the “wait and see what happens and how you feel” phase over again.

    So, I’ll take the good news about my eyes and be happy.

    Hugs.

    Barbra.

    barbra
    Participant
    Post count: 160

    Hi Kalty,

    I started out with 10mg of Methimazole 3x per day, then went to 2x then once a day.
    The medicine and a couple others really helped with my symptoms.
    I’m sure the dosage depends on your blood test and is probably only a starting point.

    Hugs.

    Barbra.

    barbra
    Participant
    Post count: 160

    Hi tinaleonardsamson,

    Since it seems that the cause of Graves’ disease, what activates it or would prevent it, is not known and there is no cure I really don’t have an answer to the “what do you wish you knew” question.
    I had heard some years back that Barbara Bush had it but my first question to my doctor was “what the heck is Graves’?”
    Well, after reading the experiences of the helpful people on this forum I know a lot more about the disease and have become involved in my care. I was scared and felt sorry for myself but eventually realized that I have little choice and have to make the best of it.
    I was on meds, Methimazole and so on, for about 3 months and then decided on RAI, which I’m glad I did. The endo is still fiddling with the Synthroid dosage and some other meds, up a little, down a little, add this, stop taking that, all according to the blood tests, until we’ll find the ideal dosage.
    I still have some symptoms but nothing compared to when it all started.
    I really don’t have any advice to give but when I need to understand something or am looking for a little encouragement I come to this forum and I have never been disappointed. Somebody has “been there, done that”!

    So, the only thing I can tell you is to familiarize yourself with the disease, become involved in your care and try to stay as positive as you can.
    I know it seems like a monumental task but you can do it.

    I wish you the best of luck.

    Hugs.

    Barbra.

    barbra
    Participant
    Post count: 160

    I was so happy to say “no eye involvement”!
    As soon as I wrote that my eye started to look different. So, maybe it’s all in my head.

    I am hoping that the swollen, crusted right eyelid and the occasional dryness, itching, tearing, sensitivity to light or scratchy feeling is from eye strain and reading too much. And yes, I read a lot.
    I have bags under my eyes, nothing new there, but in the morning my right eyelid is darker, swollen and looks as if someone hit me in the eye.

    I have an appointment with an Ophthalmologist next week.

    If this is eye involvement then this whole thing has been moving pretty fast, all since the middle of April when I found the very small goiter.

    Just when I started to feel better overall.

    Hugs.

    Barbra.

    barbra
    Participant
    Post count: 160

    I really did like the endo who actually did the RAI, but he’s with the hospital and doesn’t have a private practice. He was caring, patient, explained everything in detail and followed up with two phone calls. Too bad.

    Barbra.

    barbra
    Participant
    Post count: 160

    Hi Minnesota1,

    Unfortunately finding a good doctor, and specially an endo that you believe in, is not an easy thing as other people here can tell you.
    Mine was referred to me by my PCP. He’s OK, I guess, at least his office calls me as soon as they get the test results, but I have only seen him once and will see him again next month. Main thing is he does respond if I tell his receptionist forcefully enough that I have a problem.

    I was diagnosed the middle of April this year and had RAI done on the first of July. I didn’t want to drag it out. I went severely hypo about 8 weeks after the RAI. I’m now on Synthroid and a couple of other meds. Right now I’m not feeling too bad but I have an appointment with an Ophthalmologist because my right eyelid is all of a sudden swollen in the morning. Sometimes it’s dry and itches, sometimes it tears.
    When I called around to find out if the eye doctor/eye clinic had anyone familiar with Graves’ disease or TED they all said: “Oh yes, all of our doctors know all about it, they are all Ophthalmologists and medical doctors”. And I don’t believe any of them! It’s a crapshoot.
    So, I picked one I had seen 3 years ago and therefore could get an appointment quickly. But, if I remember correctly, even the last time it took 2 1/2 hours and was as bad as going to the dentist.

    I hope you can find an endo and an Ophthalmologist that you can have confidence in. Maybe, if you say which city you are in, someone here can send you a private message and help out.

    All the best.

    Barbra.

    barbra
    Participant
    Post count: 160

    Hi AllieKatz,

    I decided on RAI on July first 2013, just a couple of months after I was diagnosed, for several reasons.

    I am now 70 years old, I live alone, my insurance makes me pay 1/3 of the cost of anything done at the hospital.
    I wanted a solution which would not drag out like therapy with meds, something I could do and get through without needing help for 2 weeks, something without an actual cutting operation.

    I am still taking medicine, of course, trying to get the levels normalized. I’s up and down, good days and then not so much, but I’m happy with the choice I made.

    You have to weigh your options and figure out the way for you to go. This forum is a good place to get lots of answers and don’t be afraid to tell us how you feel or ask a “stupid” question. I do it all the time.

    btw, my son was diagnosed with Hashimoto’s about 4 months before my Graves’.

    I wish you the very best in whatever you choose.

    Hugs.

    Barbra.

    barbra
    Participant
    Post count: 160

    Hey Shirley,

    Yesterday and today haven’t been too bad. It’s way too early to really tell but maybe the addition of the Cytomel will make a difference and help my levels just a little.

    I know the fact that I am sleeping through the whole night, with the aid of Ambien, 5mg, helps me tremendously, although it makes me a bit wobbly in the morning. But I do have a cane and am careful.

    It’s always a long discussion with the doctors where my age of now 70 comes up, which they seem to think disqualifies me for some meds.
    I keep telling them I don’t want to live to be 100. I don’t drink, I never did drugs, I recently gave up smoking, I’m eating too much and starting to resemble the Hindenburg, I don’t gamble and my husband passed away in November. What the heck!
    I just want to have a decent day and sleep through the night, just one at a time.

    I had RAI on the first of July and haven’t been on this journey very long.
    I have no eye involvement but it’s something I do think about, hence the “no more cigarettes”.

    And I’m sending you lots of good hugs from the, today, cold and windy Washington DC area.

    Barbra.

    barbra
    Participant
    Post count: 160

    Hi Shirley,

    I would love nothing better right now than to pack some stuff and come see you in Seattle.

    I was born in Germany and came to the US in 1966. My husband, who was born in Maryland, said he was going to show me all of the states. He forgot to mention that he was going to try to live in all of them. I did see more than half of the US but never made it to New England or the far west. We lived as far south as Florida and Texas, as far north as Binghamton, NY and as far west as Nevada. I even accidentally stepped into California once.

    If it’s ever possible, money – time – and health wise you may just see me at your doorstep, for a visit, mind you. I would love to see all the sights, love the Orcas.

    Until then I’m sending all my very best wishes and hugs your way.

    Barbra.

    barbra
    Participant
    Post count: 160

    Hi Angela,

    Your levels are normal and you still get those crummy days? That doesn’t sound very encouraging.
    I’m sorry about your eye disease, that’s one thing I think about a lot and one of the reasons why I called the endo. I did not want to hang around in hypo land too long if I could help it.

    I’ve heard about Benny’s Pub on Eastern Bvd. but haven’t been there. Sounds like a place to try.

    Hugs.

    Barbra.

    barbra
    Participant
    Post count: 160

    I’m still going up and down like a yoyo. I feel a little bit better for a while, usually in the morning, and then it goes downhill again.
    I am so hypo! TSH at 34.1 and FT4 at 0.4, neither anywhere near the reference. And my throat, not my mouth, still feels dry and tastes like it’s giving off fumes.

    I took your advice, Kimberly, and called my Endo. Actually got a call back and after I told him that I can’t do 2 more weeks like this, to the 4 week mark for my next test, he added Cytomel 5 mcg twice a day to the Levothyroxine 25 mcg per day.
    I don’t know much about that medicine, but I’m going to start it tomorrow morning for 2 weeks only.

    Can only help at this point, right?

    Hugs.

    Barbra.

    barbra
    Participant
    Post count: 160

    With me it was extreme weight loss in a short time, heart palpitations, insomnia, migraines and a goiter just big enough for me to notice.
    Actually my PCP didn’t really get interested until, almost as an afterthought with my hand already on the door, I mentioned the goiter.

    All the symptoms were unusual for me, but I never thought of anything as serious as Graves’ disease.

    Take care.

    Barbra.

    barbra
    Participant
    Post count: 160
    in reply to: Flu Shots? #1181171

    That is a big question for me too.
    I did get a flu and a pneumonia shot last year when my husband was still alive, actually the first one ever, but now I don’t know.
    I was one of those people who never got a cold or the flu or any of the other stuff coming down the pike until, of course, I got Graves. I always said: “I have a great immune system”. Yeah, well.

    Hugs.

    Barbra.

    barbra
    Participant
    Post count: 160

    Hey Kimberly,

    You know I feel a bit better today. You could be right, maybe I did do too much on Sunday. I never thought about that. I just enjoyed the almost “normal” feeling.

    Something to keep in mind.

    Thank you.

    Hugs.

    Barbra.

    barbra
    Participant
    Post count: 160

    I am always suspicious of any site where the first thing they want to do is sell you a book, or meds or something. That means the primary focus is on ” how much money can we make today”.
    For me it’s then: I took a look, got out, not reading your blog and not buying your book!

    Barbra.

Viewing 15 posts - 91 through 105 (of 139 total)