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in reply to: Against medical advice?? ugh! #1176191

Rash is somewhat common Do you still have yours? Better? Worse? Same?Did you report this to her? I know it is hard for you to get to talk to her, but I guess I’d say (hindsight cause of what she said….) so, if I have a rash on PTU, then what?
I hate to have you spend money and time on another doc, but I feel a little reservation about what she said, that it can turn into anaphalaxis. Perhaps an allergist can give you a more informed answer on this one. Or even a valid, evidenced based article. To me, it sounds like she is sticking to what she said, cause she said it!

So, how much is this rash affecting you? All over your body? Not much?
Are there hives? (which are raised red larger bumps…) blah blah and on and on.

What have you decided to do?
Shirley

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in reply to: Starting PTU today or tomorrow #1175865

Amy, I am in Calif. right now. Will pursue next week. Shirley

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in reply to: Starting PTU today or tomorrow #1175864

Yes. Will do.
Shirley

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in reply to: Frustrated with doc #1176202

No. Not at all!
Seems he is treating you already without seeing you, and you have reported how you feel, and he responded by increasing the med.
Because is such a financial hit for you, too, I suggest calling the office, simply saying you have to reschedule the 1/15 appointment, Get the labs BEFORE the appointment. Any possibility of this option?
Shirley

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in reply to: Starting PTU today or tomorrow #1175860

Forgot to enclose this with last post
http://www.swedish.org/Physicians/David-Moore#axzz2Gmy0m7Pq

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in reply to: Starting PTU today or tomorrow #1175859

Amy, I am happy to ask my contacts for this information. I think we PM’d a bit. But I did not explore further, cause I was waiting to see if your insurance dictated where you had to go in Seattle. I am in the health care field, but hate to contact my physicians for solid references if you can’t consider going there.
Here is one doc whom I know does a lot of thyroidectomies.
He is not a general surgeon, but an ENT. I have excellent contacts at UWMC and Swedish, if you are interested.
Shirley

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in reply to: breastfeeding moms, can you continue after surgery? #1176161

SSKI stands for SUPER SATURATED Potassium Iodide. That is what is given before a thyroidectomy. This is NOT the same deal at all, as the potassium iodide (KI, K is the chemical symbol for potassium) And “I” is iodide (not iodine.)
Giving KI after a nuclear attack is such a different thing than taking SSKI.
Cause the pre op dose is very very dilute, i.e., saturated.
So, I can’t agree that the reference Alexis gave is helpful.
All the article refers to pregnant and nursing mothers in a nuclear attack. So much so, that it addresses that babies should also receive potassium iodide in this situation.

Of course, check with your pediatrician, but be sure they really know, or consult with colleagues. I know for an absolute fact that not all pediatricians
agree on this topic. Mine said fine, so I did, abeit a long time ago. But my neighbor down the street consulted extensively about this, and docs and mom were comfortable with taking SSKI and breast feeding.

If a ped says to refrain from nursing, I am sure that it is more comfortable for mom and doc to follow the way Alexis did it, with pumping and dumping. But not all pediatricians do say that.

I think you would enjoy reading her (Alexis) posts during this time.

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in reply to: Against medical advice?? ugh! #1176187

I agree with catstuart. Good point.
Shirley

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in reply to: Against medical advice?? ugh! #1176184

Stacy, I like your questions, think they make sense. Think following Kimberly’s thoughts are the way to go. Also, I am wondering if there is such a thing as a telephone consult option from Univ. of Michigan, Mayo Clinic, Cleveland Clinic, University of Iowa.
The other option, which I have done myself, (I am speaking ONLY for myself) is to continue to stay on the MMI for all the good reasons you have stated.
I feel, as you probably feel, that your own doc who is on leave, took the path of least resistance, and simply agreed with the other doc. To say anything else would engage her in further discussion, which she probably does not want, since she is formally on leave right now. Everything is kind of working against you, really. THe nurse was probably afraid to call the endo to begin with, cause I am sure she is supposed to leave her alone when she is on her leave. None of your concerns or questions were probably transmitted, you can almost be sure of that.
It’s true that PTU is the only other option. It seems that your rash is quite manageable. YOu don’t WANT to go to PTU cause you feel there is not enough reason to do that. Continue to get your liver labs drawn, and wait for time to pass.

I know it is much better to have a consensus, but I wonder, as you do, if there has been much thought to switching you to PTU. Maybe there is misunderstanding about the degree of rash/itching you have. Or maybe the on call doc covering her practice, suggested the easiest thing, “try the other one” It really does not seem like you are being HEARD.

Another reminder that I’m just another poster on the board, and not suggesting much of anything, cause I can’t, and am not qualified to do so, but I sure do “hear” you and your thinking is logical not whacky.

Any way you can present your very good questions to the endo covering for her, and see if there is some agreement to have you continue with MMI because you want to do that, and feel very strongly about not moving to PTU at this time?
Shirley

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in reply to: Question if my daughter has Graves #1176180

Hi, I am sorry, that is a terrible way for your daughter to feel. I am not sure from your post if you daughter has, or has not, had lab tests for Graves’.
The tests are usually TSH, T3 and T4. Has she had those tests? As Bobbi says, she sure does sound hyperthyroid. Has she had a general physical as well?
Is she still going to a pediatrician?

I realize her eyes are an issue as well, but for right now, wearing sun glasses seems like the first easy answer for this while you explore the other issues.
Shirley

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in reply to: breastfeeding moms, can you continue after surgery? #1176158

I suggest contacting a pediatric endocrinologist to discuss this. Also, the surgeon. The number of days that surgeons want us to take KI varies a bit.In all we do, we want to do the right thing and best thing for ourselves and our baby. Other than myself, I know of others who have breast fed through the KI pre op for a thyroidectomy, with the agreement of the pediatric endocrinologist on this issue. Yes, do explore all of it yourself, with the docs involved in your care and the care of your baby. There is a good chance that there is not a unanimous opinion, on the other hand, perhaps, as time has evolved, there is a consensus to refrain from breastfeeding while taking KI.
Shirley

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in reply to: breastfeeding moms, can you continue after surgery? #1176155

A comment to Alexis and to anyone else it may mean anything to hear.
Feeding my babies was one of the most wonderful experience of my lifetime.
With all three of them, it was a magic time, when I, Shirley, was THE PERSON who was (by my choice) keeping the alive,and providing essential nourishment for them. I firmly believe that people who choose not to nurse, or those who cannot for one reason or another, are just fine, and their babies are equally fine.
But. I would not exchange this experience for much of anything in my whole life, except the whole process of pregnancy and delivery. I liked it a lot. My Graves’ diagnosis, when I FINALLY got it, was called “post partum thyrotoxicosis.” I was super crazy toxic and hyper when my baby was three months old. My heart and soul go out to all of those on this forum who have the experience of Graves’. It is really, really difficult.

Alexis, I remember now that you did pump and dump. Forgot that. That must have been very, very hard to do.
Shirley

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in reply to: Please help. Debilitating fatigue, unable to work. #1176168

Yes. Get those labs! Hope you can make this happen. He does seem hypo.
Shirley

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in reply to: Please help. Debilitating fatigue, unable to work. #1176165

When the ADT’s and beta blockers are begun, both doses are pretty much a guess. Everyone reacts differently, and my general understanding is that, at this stage of the game, the endo should have told your husband to be in close communication with the doc about how he is feeling, realizing that it takes variable amounts of time for the meds to make a difference. And, that a set of thyroid labs, including liver function labs, should be done, to evaluate the labs with how he is feeling. That usually happens about 2,3 weeks after beginning the meds.
I find myself wondering if the way he is feeling NOW, is different than when he was diagnosed,a nd I think the endo would want to know this info. As Naisly said, he sounds hyPO, and hard to believe, but being hyPO is as bad as hyped, and in some ways, I found it worse. I could not function AT ALL.

I am guessing your husband has had the first appt with the endo, and that is it? But I suggest calling (I know it is another nightmare few days for medical care and office availability) and reporting how he feels, all of it, and asking
if you can have a lab requisition sent to an open lab (if this is available to you) or anyway, the endo should order labs, you and your husband should keep copies of all things, and the endo should know how terrible your husband is feeling.

It is true there are different periods of time for people to feel better, but it is very possible that one or both meds need to be changed, decreased, or whatever. This beginning dose is Not set in stone.
I am so sorry he feels so terrible. It is very demoralizing, discouraging and disheartening. As Bobbi said, we do get better. But it can be a rough ride while we are getting better. Far better to be diagnosed, though, beginning treatment.
Shirley

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in reply to: Now Endo says take 3 pills? #1176111

I think I remember that the Cleveland Clinic is not where you are. Right?
I am just thinking out loud, but how about the Cleveland Clinic faxing the lab request to you, and perhaps your primary care doc’s office would draw the lab?
But I don’t want to belabor this at all. trying to brainstorm a solution for you when we don’t know the facts (except that every darn place is closed for many days! I am visiting in California, and this family has doctor appointments on Monday! Go figure.

Well, GW Bush is out of the ICU, and I hope your mother stays out of it. I hope she gets good care, recovers fast. Hospitals are not the places anyone wants to be, or wants a relative there. They are not conducive to any kind of rest, or familiar food. I hope she gets out of there fast!

I certainly approve of your decision to stay away from the endo who did not think of your symptoms and make a correct diagnosis. Happens too frequently!
Thinking of you, and sure hoping you are feeling a wee bit better, and that your mom improves and goes home soon.
Shirley

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