[snelsen]

#1170051

Hi Supermom.
Well, one thing to put on your list of things to DO, is make the arrangements we talked about before, to get your labs done before your visit. In a generic way, this involves simple stuff and steps.
(have you arranged to get hard copies of your labs and visits yet?) If not, check with the front desk, sign your permission to receive your records for your own file.)
1. Ask what the procedure is to get your labs done before your visit. Ask how long it needs to happen for them to have the results.
2. i am sure they don’t care. I usually take the labs slip home from the last visit for the next lab.

You has asked before about understanding ranges and why they are important.
The labs require a bit of thinking about, and there are certainly numerous prior explanations by the facilitators on the site of what that mean. There are so many really good descriptions. In your last posts, you haven’t said how you feel, and decisions about whether to increase or decrease meds for you, are based on both things.

you are taking these drugs right now to block the crazy overproduction of thyroid hormone, to decrease your heart rate if it is too fast which is a 2nd drug called a beta blocker, usually propanol) and the methimazole by calming down the stimulation that makes too much, which, in turn, gives us all the symptoms of Graves-ie, we are hyPERthyroid.
The docs have to begin someplace, with a dose, and it is very likely that it will be increased or decreased, depending on labs and how you feel. I would guess, and it is a guess, that your probably feel better since you have begun the meds, perhaps less crazy and less hyper-and maybe now, you could be feeling more tired, but feeling better overal. Once you get to the spot where you are not hyper or hypo, then you will be having discussions (of which there are good articles and excellent discussions on the board) to complement what your doc is telling you…about how to manage your Graves’s long term. There are three choices, and I am not going to go into them now, for they are well covered from here to Sunday, so take a look at some of the other conversations when you are ready.

Since you are going to live with this for a long time, I suggest at the next visit, you get explanations from your doc or someone in the office you know understands Graves’.

[snelsen]

#1170052

sorry, i had the same old cursor problem I sometimes have, so just send the last post.

You will get through this, you will get better. You will, you will! If the labs are too overwhelming, maybe try to learn about one of them at a time, and consider taking someone to the visit to take notes, and have your list of questions before you go. If you look at your older posts, you will be impressed at how much you have learned already! Go girl.
Shirley

[supermom]

#1170053

You are right I do need to somehow get my blood work done before the appointment. I will work on getting that before my next appointment!!! It might involve me going out there to pick up the lab slip unless they can just mail it to me…I will check into that. This last lab appointment crept up on me and I didn’t have the scheduling time to get that worked out.

Yes, I’m taking a beta blocker: propanol…it seemed to work well immediately. My heart rate decreased from about 100 to 120 to about 60’s and 70’s.

In the office I am visiting there is an endocrinologist and an ARNP. I have seen the dr. once and the other visits have been the ARNP. That may be very common.
During this last visit I asked lots of questions and she wasn’t sure on many of them. Some were how the production of ovary hormones worked in conjunction with thyroid hormone. She had no idea and could not explain any of that to me. Again, maybe it is too difficult to answer thee questions as there could be too many unknowns or variables.
I also asked about the length of methimazole and she said a year to a year and a half…then we would discuss the removal of my thyroid if the graves has not been controllable.

I continue to feel like my current care is not making me feel better in regards to “bedside manner” as well as level of Knowledge from the practice.
I am feeling better overall. I feel less irritable and emotional. Although I continue to have on and off again anxiety. I feel I have true pms for once in my life. Before I think it was just normal emotional swings, but now it feels like it has gotten worse. I am now frustrated by Graves and hate it. I don’t want this. blah.

[snelsen]

#1170054

I hate it a lot, too. It really helps to get regulated and feel more like our old selves. It is very difficult to feel patient, or fair, or nice at all, when we are hyper. Believe me, I was none of those!

I don’t know how reassuring this is to you, but it sounds like you are getting very good care and management from your endo. Really! You are right, it probably is asking too much to ask her to discuss the relationships of estrogen (the main ovary hormone) to thyroid hormone. But the basic issue remains the same. We need to get back to the way we were, which is euthyroid, or normal, neither hyper or hypo.

All premenstrual symptoms, and that whole ball of wax, is dependent on a lot of stuff, especially your age, as you know (i don’t recall if you did mention it) and how you have been all of your life.

My daughter is 46, and she wants to kill everyone (not really, of course) when she is premenstrual, and is much more emotional and cries more easily. This is off the subject of this board, but recently she tried primrose oil, and said (and her family said) she was much less labile and emotional. The whole family wants her to continue it !! She is 46. She sometimes thinks she is perimenopausal, and she may be at that age.
I guess if you really want to know your estrogen level, you can ask someone for that lab. But it seems that you have enuf lab learnin’ on your plate right now!!!! And it does sound like your providers “know their Graves” so that is good. i think their level of knowledge is pretty good. And, you can get a lot of support from this board on the bedside manner part of it. You can do your part at the visit, by having all your info, symptoms and questions ready.
My endo is nice, but I really don’t expect much more from him except to really know his stuff. I know how Graves’ goes, from reading and from my own experience. it was very reassuring to me to read that there were tons of other people out there who had these experiences, and all that the textbooks say, which reflects how we are.

Really, it does sound like you are getting better and better. It takes time! And we don’t feel patient.
Gotta make my bed so I can get in it! good night.
Shirley

[Theresa]

#1170056

Supermom – Although i’m new to Graves myself, i’ve been in and out of hospitals/doctors offices/testing facilities more than I care to. Not for me – for family members. One thing I learned early on, is every time I have a test (if its at a hospital or doctors office) – request a copy before you leave. This includes x rays, ultra sounds, MRI’s, etc. etc. If you need them down the line, you have them (more than likely, you will). When I had my uptake scan and ultrasound done recently, I have the copies to take with me if I decide to go to Mayo or whereever for another opinion. When you have labs drawn, automatically request a copy to be sent to you. I have had some that will send them directly, and others won’t. I usually have the results sent to my GP along with the endo., because my GP knows me well and will automatically send them to me When you are dealing with a illness, the last thing we need is more stress, and having to chase around for test and lab results.

Your endo should have given you the order to have labs drawn before your second visit. IMO, he/she dropped the ball there. In fact, if he/she is going to order labs often (which he/she probably is), see if he/she will give you a standing order, or a order without a date so you can just write it in. Mine does this The week before your appointment, go get your labs drawn, request a copy, I usually review them myself before my appointment in case I have my own questions, and then bring a copy with you.

[snelsen]

#1170055

Theresa is echoing everything I already said about having your own medical records, and getting labs drawn before visits, but she said it better, and with more suggestions and detail. Nice post, Theresa. this is a song I sing all the time on this board.
Shirley

[supermom]

#1170057

Thanks for the help and the encouragement to get my medical records and working on setting up blood work first then appointment.
I suppose right now I’m not being patient, fair or nice! I guess I think it should be their job to obviously set up blood work first…so I know get over it and just work on fixing the problem instead of complaining about it.

The hormones problem makes sense, I shouldn’t expect them to be knowledgeable about everything and just focus on the “Graves symptoms”, it just seems like things take forever to figure out…

I suppose I’m just feeling frustrated right now for no reason at all other than to say that I’m going through a “I want this to go away” phase.

Thanks again for the support! It does help to know there are others out there that can listen…even when I’m just complaining.

[Theresa]

#1170058

You will quickly learn no one will take care of your medical needs like you will. Learn as much as you can. Doctors offices will tell you what you need to do, and you have to follow through and make sure it gets done (as far as tests, follow ups, etc.).

I’ll give you a example. My Dad has been a brittle diabetic and heart patient since he has been in his 40’s. He is now 70, and a mess. The latest is he had to have his foot removed due to gangrene. We have to take him to the hospital 6 hrs a day everyday for IV antibiotic infusions and HBOT treatment. To make a long story short, he is on warfarin, and has been on it for years. Since this latest challenge, we can’t seem to get his INR under control. Every week for years he has gone to have his blood checked, but now isn’t well enough to drive (or keep it all straight). He is at the hospital 6 hours a day! Do you think they have been checking his INR? Nope. I thought of it Monday and called to confirm it was done last week. Nope. They checked it yesterday, and it was 6.7! It should be 2. He could have easily had internal bleeding. I called the doctors office (same doctor that follows his INR and knows the situation and is responsible for writing the order) and was told it is the families responsibility to make sure it gets checked! Are you kidding me? Ugg.

I normally love this office, but it goes to show you no one will keep it straight and care as much as you do. Ask questions, and again, learn as much as you can about your health care. Even the best doctors drop the ball.

[Author]

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