[ewmb]

in reply to: Pulse is Down Good News? #1068972

Well I didn’t get to go visit today. Woke up with fever, headache, sore mouth feeling generally gross. My mother thinks I have the FLU. Finally got my tapazole today after the pharmacy had lost the phone in, found it, told me they didn’t have any, said yes they had ordered it last night, finally husband went and got and had to pay out of pocket for it as it was less than the co-pay $50 for it being a third tier drug. No wonder people would rather have the generic price………. Health care in this country needs help. The rash is almost all gone so hoping this brand name doesn’t make me itch.

ewmb

[ewmb]

in reply to: How do I cope with Graves’ Disease? #1068824

Kit,
I don’t know how you can get benefits but wanted to say this is a great place to find out. I am sorry that you’ve had such a time. What do you do in the schools? I gave up on teaching earlier in my life when I got fibromyalgia as I never knew how I would feel from day to day. It can be hard to stop doing what you love.

Hope you get some help soon.

ewmb

[ewmb]

in reply to: Risk of Thyroid Storm Question #1068909

Krystal,
Glad to know that you’re doing well. Please do keep eating. I’ve heard that when people are hypo their appetite can decrease even though they might gain weight. I know you are on the synthroid now but wonder if that’s part of your not wanting to eat right now. My heart rate is still staying down most of the day under 90 but was 103 this morning. I don’t know if I’m ever going to get the tapazole again. The doctor hasn’t called and he’s usually not this slow. I’ll have to call again this morning.

Hope you find a good deal on a car and a place to live. Have you gotten your text books yet? If I remember you were waiting for your financial aid to come. Good luck with your classes.

ewmb

[ewmb]

in reply to: Risk of Thyroid Storm Question #1068907

Nancy,
Thanks for the reassurance. I made the decision to try and go back on atds to help me feel better but tomorrow will be day three on waiting for the endo to get back to me saying he called in a new scrip for tapazole which I hope won’t make me itch like the generic did. I am only going from Raleigh area to Charlotte area and I’m not driving so I hope my trip will be a good one. I keep looking to the future to try and see the end of this flood of hormone. The drowning feeling wins a lot of the time. Good thing I learned to swim when I was little…..

ewmb

[ewmb]

in reply to: Pulse is Down Good News? #1068971

Lacie,
Most likely it was one of the inactive ingredients in the generic called povidone. It apparently makes a lot of people get a rash. Still no word from the doctor on the new scrip. I even called the drug store to check. Maybe it’s fate that I go without it. Maybe I don’t really need it. Maybe it’s all been a bad dreammmmm LOL I’ve only taken two naps today so far.

Good news on my office move, they are giving the old office I’m moving too new carpet but there isn’t really any furniture in it so I’ll have to work out of boxes for now. My boss is nice and said not to worry about the move until I feel better. I told the secretary to go ahead and let them move everything is they want to. It could be months until I feel better and I won’t ever feel better about moving to this yucky basement office. I haven’t gone to work since Monday anyway. I’m lucky that if I run out of sick and vacation days, which I did quite a while ago, that they just dock my pay. At least I’m keeping my job for now.

Maybe seeing my Mom and Dad will be good for my soul. They have even reserved a hotel room for my family to stay in so it’s less stressful. Lots of family coming at once.

ewmb

[ewmb]

in reply to: Having a bad day- need cheering up #1068849

Lakeview,
I am so sorry to hear about your scary drive. I don’t have any eye involvement as far as I know. I am very careful about my eyes as my mom has unexplained uveitis and glaucoma and one other thing I can never remember the name of . I remember when she had to stop driving. It was hard. She hasn’t driven now for almost 20 years. How were the results of the test or did you get them right away? How did you notice that your eyes were starting to change?

Are you going to a local opthamologist or do you have to drive that far each time? My Mom has to come about three hours to get to her specialist at a university hospital eye center. Luckily my Dad can still drive right now. I am no help as I am still hyper right now and haven’t even been able to drive more than 30 minutes.

Is your thyroid under control or does that add to the eye involvement?

It can be hard to find a silver lining in a day like today. Maybe you can take a long bath, or a walk, or make a great dessert for supper, oh heck just eat dessert for supper!

I will think good thoughts for you. It’s raining here in NC. I hope the sun is shining where you are.

ewmb

[ewmb]

in reply to: Pulse is Down Good News? #1068969

Lacie,
I am waiting for the doctor to call in some medication for me. I have decided to try the brand name tapazole for a little while to hopefully get me back on my feet. I have been off work for several days and can’t seem to go. I sleep a lot and can’t concentrate. Sounds familiar huh! My period is scheduled to show up but I’m not sure it will. Going into menopause on top of this is making it hard to sort things out. I am hoping that this is the last of it and that it will start coming up. I read on one of your threads about someone who had their worst at 3 months out so I have another example of how everyone is different. I am taking on weight too. When I am like this I don’t care what I eat and I am a wreck anyway so I bake. It makes me feel productive and then of course you have to eat what you bake. My daughter’ s been at band camp 8-8 for two weeks. My son is leaving for college next week and I am supposed to visit parents this weekend.

AHHHHHHHHHH

Hope the medicine comes soon and they thyroid keeps dying.

ewmb

[ewmb]

in reply to: GD and Lupus…Why different Dr.s for them??? #1068895

Rhonda,
I don’t know about a Dr. that just treats autoimmune things since they can affect so many systems in the body. I.e. my mom has uveitis, an eye issue that’s autoimmune, that I am sure another doctor not trained in that field wouldn’t want to touch. You might be able to find a hospital based practice that supports and endocrinologist and a rheumatologist that know each other and would advocate for you with each other. I can’t remember where you live. A teaching hospital might be a good bet.

Have you looked at any of the NIH web sites, NCBI, medline for statistics? You might google that question and click on scholar at the top to get papers that might help you out.

ewmb

[ewmb]

in reply to: Ava’s surgery and other off the wall stuff #1068898

Valarie,
We will be thinking of your daughter. We have a little friend who has brain cancer for the second time and she is only 3. Her parents started a web journal that other people could read about what was going on. It was through the hospital and really let those of use who wanted to help know what they needed. I hope you will find the energy when this surgery is over to share what you all have learned as Ava is probably not the only one who will experience this in years to come. I wouldn’t have learned as much as I did about Graves, that I needed to know, to try and become healthy again without the sharing of the others on this board including you.

Take care,
ewmb

[ewmb]

in reply to: Risk of Thyroid Storm Question #1068905

Krystal,
Thanks for the message. I am waiting for the endo to call back to say whether he has been able to phone in a new prescription for the brand name methimazole. My rash is almost gone, just dry skin now. I hope I am on the way up now but it’s hard to know since my numbers yesterday were still so hyper. I do wonder if I was one who held on to the radiation in my thyroid longer. A couple of weeks ago I was still making a geiger counter go off. I am supposed to travel this weekend and don’t want to go visiting in this state.

How are you doing? Are you eating enough now? Hope your house hunt has turned up something for you.

ewmb

[ewmb]

in reply to: confusing? recently diagnosed..anyone?? #1071408

Did they check your white count, liver function things that could indicate that you are not doing well on the tapazole? I actually went hypo on medication. If you TSH and other numbers are in line with normal I guess that they want to see if you are in remission. I went off medication, I think I was on 2.5 mg, to have uptake done last summer. I was around your TSH and after I had the tests I decided not to go back on the medication. I didn’t stay in remission and went hyper again and chose RAI this summer. Call him back and ask some questions if you’re not sure what he said at the appointment. It can sometimes be hard to remember when you’re not feeling well.

Let us know how things go off the medication.

ewmb

[ewmb]

in reply to: Pulse is Down Good News? #1068967

lacie,
From what I read in a book the FTI is the Free T4 multiplied by the T3. Since it is high I don’t think I need to go back for the Free T-4. They did the total T-4. It’s just really all bad news right now it seems. I am really not sure about going back on any medication. Does anyone know the risk of Thyroid Storm after RAI? I think the TSH does lag behind but having it go lower each of the last three tests is definitely a downward trend.

ewmb

[ewmb]

in reply to: Pulse is Down Good News? #1068965

Well, the news is not encouraging. TSH is .0004. Is that even worth reporting? The nurse forgot to ask for the Free T4 so I don’t have that number to compare with last time. Anyway, I’ll have to decide whether to go back on some methimazole now. The rash is now crusty so I think it’s near the end. I am wondering if anyone knows the answer to this question: Does the fact that my FTI has gone so high an indication that there is more hormone begin released- or more being made- or is there a way to tell the difference? I am hoping that it means that mored stored hormone is leaching out.

I have a sore throat again now too so am wondering about that. Did anyone else go through all these ups and downs after RAI.I was expecting it to be just down and then up.

ewmb

[ewmb]

in reply to: Newly diagnosed & have questions please #1069159

Sorry you’re having a hard time with your sister. You’ll have to tell her that the friends she has are not hyperthyroid most likely but hypo if they just take a pill and they’re fine. You might be right about your mom. Hope you can find some answers there. Maybe you can print out one of the information brochures or web md page and let your sister read the difference. There are lots of family members who don’t want to understand at first. Graves really will harm you if you don’t take care of it so good for you for asking questions and finding out as much as you can. The important thing is that you are getting treated somehow.

ewmb

[ewmb]

in reply to: Overmedicated…please someone explain! #1068936

Sorry you are having so much trouble. I was on atds for almost a year. Went hypo on them, yes it’s quite possible. I then went off completely after having to stop to have an uptake test. It took me almost another year to go hyper enough again to have RAI.

Call back and give them another number if you can so you can speak with her tomorrow or ask her to leave a detailed message so you can call her back from somewhere else if needed after listening to the message.

You should be getting copies of these labs to keep so you can keep up with your own levels. I have to ask to have them mailed to me but it’s worth the effort as they do get patients confused sometimes.

I will tell you that I was never any good at guessing what my levels were from how I felt. I had no clue I was hypo on the meds. I have had many many tests now and am still not good at guessing.

I hope you find some good answers soon. Maybe you should seek a second opinion if you feel that you aren’t getting good care now. I know it can be hard to find another doctor some places.

Good luck,
ewmb

[Author]

Posts