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in reply to: 6 MONTHS RAI AND STILL A ROLLER COASTER RIDE #1065341
Here’s the deal. All labs/clinics/hospitals/etc. have Medical Release of Information forms. Look at them like you know all about it, ask for one, then kindly insist on it if there is any resistance. Fill it in, saying in the release section,
To myself, your name and your address. Some of them have many things to check. For the lab, just check (or write in)
"lab results." For your doc’s info, ask for test results, dictated summaries, radiology dictated reports, or whatever is appropriate. You will meet resistance if you do not complete this stuff. I have a pretty good repoire with some people, and they will just do it. All they have do do is click a key on the computer. But the release forms do protect them, and you.
I am so sorry you have to go so far to get a lab draw, that sucks. They can, and legally must, provide that info to you if you sign the release forms. I am not sure about the fax, I have never been able to set mine up so that it works right at home, and haven’t cared much because of my online access. I am such an information freak, I absolutely love it. It is very reassuring to me to have a file from all my docs, and I invariably find mistakes! In the meantime, use your job and you doc’s fax #. Bet he doesn’t care at all!in reply to: 6 MONTHS RAI AND STILL A ROLLER COASTER RIDE #1065338Hi Pat, I am responding to jus one thing in your post. I totally support you in being able to know you labs (and have a printed copy) anytime you want, including a nice copy of your TSH and T4 from the past years so you can see the whole picture.
Not sure where you live, but I can look up online (and print) my labs as soon as they are done. At the very least, you should get them any time you want them. That, in my opinion, is messed up! It is your right to have them. I usually know them before the doc, because, actually, I am one person following ME, and I am very interested in Me! I am usually the who reminds him to take a look. BUt he is very good, a great endo, and I am lucky to have him. It took three tries to find him, though!!
Shirleyin reply to: Post-surgery update #1065290Hi lhc, I had pretty much the same good experience you are having post op. Minus the catheter. But I know the relief it can bring. As a pre/post op recovery room RN (until I retired last year) I am wondering if they gave you a chance to go to bathroom RIGHT before you went to the OR. It is very important to do, and often forgotten in the rush of things (which really don’t need to be rushed.) Other than that, you may have gotten a couple liters of IV fluids. At any rate, it is HISTORY, and you are getting better with each day. As I recall, post op day 3 was the day I felt most uncomfortable. I think I took a shower (carefully, to not move head too much on day 4) the day of surgery being post op day zero.
Just a little minutia that really does not mean much, but more happiness from me for you, knowing this behind you, and you are moving toward normal. I know experiences are all over the map, but after the surgery, I was euthyroid, feeling super great and super normal for the next 35 years!
Shirleyin reply to: Life after RAI question #1065306Hi Cheermom!
Your symptoms are music (not really at all,) for me to read. Why? Because your story reflects mine. My TSH has been suppressed for a long time.Slow pulse, (52-58),felt great, right weight, lots (but too much, just normal) of energy, libido typical for my age. Regular appetite, love to cook, eat moderately and healthily.WELL, I caved in to reducing my Synthroid, very slowly, over the past year, from 150mcg to 75mcg…until five days ago, when I said ENOUGH! I have been pathologically COLD beyond reason, went to Florida from Seattle in the past week, and work a coat at all times, even when it was 98 in Tally! pulse is @ 58-62, sluggish, little more irritable,poor sleep now at night, wanting to go to bed, partly to get warm, partly cause I felt soooo sluggish! GI system all screwed up from top to bottom. My TSH is still suppressed, T4 is fine, and I don’t care anymore. I want my life back. Fortunately, I have an endocrinologist who agrees to slowly get me back to a feel-like-a human back-to-myself life. So we are now slowly increasing my Synthroid to 100mcg. I have done it all, with each decrease of hormone I felt worse. Also took Cytomel, which I don’t think makes a lick of difference, but I asked for it, and don’t want to risk having less energy than I do.
I know I am not a role model, but I don’t care what the TSH says anymore. It has not budged from .002-.006 over a year, with Synthroid range of 150-75mcg. Everything else about me is fine (except TED, which is awful.)
Ok, I have vented and whined. I sure hope you get things figured out.
Is you endo willling to increase your dose? that is all I can think of right now.
There are the numbers…and there is the person!
Shirleyin reply to: Surgery Tomorrow, Yikes…. #1065313Hi, your pre-op jitters are sooo normal! I think you have read my prior posts @ my TT experience. Take it one thing at a time. Re the psychiatrist, just don’t make another app’t, of course he is misinformed @ Graves’, just doesn’t get it, probably never will.
I think Kimberly and Bobbi have written @ weight, but it will all even out. Remember, you are doing a great service to yourself, your health, your longevity and your family, by your decision to not live in a hyper state, really bad to have that motor racing all the time! By doing this, you will have way more control than you do not over your world. Unfortunately,
I am president of the Instant Gratification Club, (just made that up!) This site becomes more valuable to me every day!
Best wishes, you will be fine, you re making a positive move, yea.
The nurse is correct @ the TSI. Will be thinking of you tomorrow……..
ShirleyHi, just a couple comments. Because of where and how it is metabolized, thyroid replacement really DOES need to be taken on an empty stomach with a glass of water. If it is taken at a different time of day, or when stomach is not empty, the levels will be affected.
Re Cytomel. Ski’s answer a good one. I asked for Cytomel, my endo was willing to prescribe it, but he pretty much said it probably would not make a difference in my energy level. I do take it, I do think it made a slight difference, but hard to tell if it REALLY did! Now, I cannot evaluate, cause we have been reducing my Synthroid every month, and I have been turning into a slug, despite my labs which tell me that I am hyper. There are sure no easy answers to this disease.
shirleyin reply to: POSSIBLE EFFECTS OF PTU #1065393Hi Sara, just a quick note.
Interesting that you moved from Seattle to Madison! I am originally from Iowa City, but my daughter and her husband were in school in Madison for many years. Now they are at Caltech, but John goes back to Madison frequently for conferences.Would you like me to ask my endo to recommend two or three names of endos in Wisconsin? I will ask him to to the best job he can, finding a good person, who preferably works with thyroid disorders. One who is comassionate. Preferably, a clone of him. Maybe if you have a few names, one or more of them will be a PPO for Badgercare. Or, if it is an HMO, in their system. Just let me know, I am so happy to do that, and it is a better map than operating from no map at all.
I absolutely know how you feel. I look back with amazement that I was an energetic, happy, normal person, before all of this. I am extremely impatient with the time it takes to wait for labs, then be discouraged because they do not represent how I feel. You (we, all of us!) definitely deserve an endocrinologist who understands all the complexity of this disease, and how it can affect every aspect of our lives.
ShirleyGood morning, lhc!
Just read your last post. I am full of admiration for you, how you have sifted through all the variables, factored in the human stuff, weighed your personal pros and cons as well as the available objective choices. The relative "instant gratification" of the surgery as opposed to the RAI makes sense in your case, you have made a good decision for you.
I know that it is challenging to live in the same place in the academic world, if the positions are not there. You will be fine. I think your idea of freezing some sperm makes sense. My view is that all your decisions have been made with the result that you are doing the right thing for your own situation. I look forward to your posts during your post op recovery, and to additional thoughts from you between now and June 9. Remember, it is a normal baseline to be anxious before any procedure. I would be worried about you if you weren’t! Love, shirleyin reply to: Kidney Stone… update 5/27 #1065545Hi!! SO glad I checked in again, caught your post! Good job! I think it is absolutely wonderfully HILARIOUS that you called the other guy, learned why he left! What fun to laugh with the receptionist! And really glad you moved ahead and made the appointment.
You are doing a great job trying to deal with this crappy disease! ANd you are busy! Four kids! How old are they?
I have decided you are in the Pacific time zone. Right or wrong?I think I have had better doc experiences. I have, on occasion, changed docs, but have never had a real stinker.
Unfortunately, I have had way way too much experience with health care as a consumer. I think the thyroid issue, and the TED is much, much, more stressful than all the chemo, radiation, etc etc that I had for my (yep!) two breast cancers.
I am ten years out from the last one, thanks to Herceptin for my HER2NU gene. No family history of either thing, breast or thyroid.
Time to read (I have good downward vision!) a good book.
shirleybrief update. going to up to 100mcg for four days, see if i actually feel any different. then we talk some more.
I am sure the gastric emptying studies showed delay. The endo will work with me on all of this. It is so so slow!
Has taken 8 months to reduce synthroid, and how I feel really does not make any sense with my labs. Not a bit.in reply to: Kidney Stone… update 5/27 #1065543Hi, I am so grateful for you that you have this behind you. It will make a big difference.
When you are feeling better, all of life will look brighter. It is hard to live with chronic pain.
Perhaps, now that you are home anyway, it is a good time to make an appointment with an endocrinologist, for it takes a long time to get in, and you may need a referral, depending on your insurance, and the docs.
My insurance is excellent, a PPO, but for medical specialties, I need to submit my history and labs, dictated reports, including the one from endo you did not like if you are willing to do that, if you don’t want to , the world will not end.I am in a different camp than you regarding second chances, I give them freely. Do what works for you, but consider not burning all endo bridges, for it takes a while for them to get to know you, and work with you on a treatment plan. And we need them. There are docs out there who will use their extensive knowledge, which they do have, and combine it with how we feel, and allow for discussion. I am in the middle of that right now. If you read my email sent today, you will see a bit of my story. Unfortunately, it takes so darn much time to have the labs catch up with how we feel, and there are always instances (ME, ME!) when my symptoms are completely contrary to what I "should" be feeling. it is definitely a balancing act, and I am in the middle of it. In my experience, it has always paid off in a positive manner. At different stages of this darn thyroid disease, we have different degrees of patience. I do know that I was not always pleasant and fair when I in the throws of my hyperthyroidism. I felt like I was absolutely LOSING IT and nuts. And I was. NOt fun to have our bodies boss us around.
The best of the best to you, mamabear!
shirleyin reply to: POSSIBLE EFFECTS OF PTU #1065391Hi Sara, I think at this point it might be helpful to you to hear my experience, for they are similar. Had a baby, became hyperthyroid, also called post partum thyrotoxicosis, within weeks of delivery. I was a nut case, big tremors, voracious appetite, very rapid heart rate (180) never slept, trying to nurse a baby, work full time as an RN.
It took collapsing at work to be admitted and get a diagnosis. Everyone, including me, assumed I had a lot of stress, and that I was anxious (I was, feeling like that, and having my body running at warp speed with little sleep.)I was put on PTU, watched carefully, began to feel better (like i was not crazy, there was a REASON for all of this, heart rate slowed down to a safe level, able to get some sleep, etc etc etc. They tried to wean off the PTU, did not work, i immediately reverted to full blown hyperthyoidism.
Question for you. ARe you being followed by an endocrinologist? If not, it is pretty essential for you to have a good and compassionate endocrinologist in your life. You need a skilled doc helping you with this. Probably an endo would be ordering T3, T4, as Kimberly suggested. Is the possible for you? Has anyone suggested to you to consider a thyroidectomy or RAI (radio active iodine.?) Maybe, for you, it is time to consider other options rather than being on anti-thyroid med? I chose the surgery. It was the right choice for me. People feel differently and you can get different experiences and reasons for choices, as well as different opinions from your docs, but generally speaking , the choice is yours. I did not want to wait and wait and wait, it seemed a longer path to go with RAI. For me, surgery was the answer, and I have never regretted it. Several of the facilitators have had RAI.
You symptoms DO sound like hypothyroidism, and I am not familiar enough with your anti-thyroid drug to address potential side effects which could possibly affect you.
As an aside, I am sure that your learned a while back that it is contra-indicated to send a woman home with ruptured membranes, for the very reason that the incidence of infection skyrockets. I am very sorry this happened to you, your son and your family. Rough and scary start with a new baby.
This is the perfect site for you. I have no idea how I would have survived without it. And it is a valid site, with skilled and objective facilitators. It is usually reasurring to read the experiences of others with Graves. Having said that, it good to recognize that some folks who write are just plain angry at the time they wrote.
I find it very reassuring to know that others are having some of the experiences I am having, and very very very REASSURING TO KNOW THAT THIS HELL WILL HAVE AN END. It is very hard to have this disease, compounded by the long time it can take to get your medications adjusted.
Sara, I am so darn sorry you feel terrible, and it is very difficult to have other people understand, and for you to deal with these symptoms which truly are affecting your life. Everything takes too darn long, and we are entering a three day weekend. Keep writing.
My big question for this post is to give you support, that you will be normal again, and ask if you have an endocrinologist following you.
ShirleyThanks, Kimberly! I do appreciate the research you have done, and do realize that there is not much evidenced based research on this one way or the other.
In back fence talk with my neighbor, she said, "It is also a product of allergies, and people in Seattle who have never had problems with allergies in their life, have had allergy symptoms this year. Has anyone mentioned that?"
Well, hmmmm. I am one of those people, and my nose is runny, then stuffy, my eyes a bit itchier, etc etc."So I called the doc who declared that the mild chemosis in my right eye probably meant that I was in the active phase,thus telling my I should not have the strabismus surgery FOR SURE, and asked this question.
His return call, "Oh hi, Shirley, sure, chemosis is really common this year in Seattle in people who have never had allergies."
He seemed disinterested and cavalier about the whole thing, and I am beginning to suspect that he is not a happy boy because I did not choose him to do the strabismus surgery. Too bad I have to use MY emotional energy to be bothered by this kind of mickey mouse. BUt that is the way it is sometimes.
Well, I vented, I feel better now, will feel really better when I pull some weeds and thin my carrots!So glad your weekend was a good one. I think you will gain confidence and much less anxiety when you have made your final decision. Sounds like you have, and although all of us choose different routes for different reasons, both subjective, objective and just plain emotional, you have done all your homework, you know yourself well enough and you know your reasons for wanting to move forward as quickly as possible, which does speak for the surgery. Go, girl!
Welcome to the world of human beings, feeling anxious about having surgery. It is the real outlier out there who does not feel some anxiety, and at the same time, feeling good, because the decision has been made. YOu know why, so you are golden.
YOu next posts can be about your post op course!
Re the primary care person, and her heightened awareness about your comment @ suicide ideations, this profession is
encouraged to really have heightened concern if they hear that in any context, so you can expect what happened. Your idea of seeing her again, in your present state, and simply explaining that you had a lot to work through, plus anyone who is hyper is all over the map emotionally at selected times. When I was at my most hyper, everyone thought I was nuts, and I did too!Your idea of seeing her again, referring to that whole situation as a non-issue, and that you appreciate her concern but that it is completely off the table in your mind, should do the trick. This where you are now. You have had lots of stuff going on, and maybe it is time to slow down on your internet surfing. There is a lot of junk out there, too.
It sounds like you have a great surgeon, that you will be as ready and informed as you can be for this, and I can PROMISE you that you will feel sooooo good that you are taking action. I think the surgery and the post op weeks are all feathers in your cap, indicating beacoup progress to where you want to be!!! Moving toward your pregnancy planning.I do not think it will be much of an issue for you to find an ob person, and definitely will not be a problem for you to have good care coordination with the endocrinologist and the labs will definitely be followed. Not sure where you live, but if there is a high risk ob person in your sights, maybe you can go to them. My son’s wife went to one for two reason, her age, she was 40, then turned out she was having twins. A reproductive endocrinologist is an outstanding idea. I guess I would talk to your friends, see if there is an ob they like which is covered by your insurance. It is certainly nice to have a good and friendly relationship with your OB, it is important when you are having it, but once that baby is here, they are out of your life except for a few post partum checkups. do some thinking about your primary care person, grab another appointment as soon as it is convenient, and get your concerns cleared up about that!
Now, I am a micro-manager and control freak about my own medical life too! I do the best I can in finding out about docs, and the MOST reassuring thing I can do is get copies of all dictated reports, labs, etc. Of course you need to sign the medical release of information forms, so put at the top of your mind to ask for it and sign it, as you check in for any new doc. Pay attention to how long they last. Some offices have a fair amount of common sense about that, and will just click a button on the computer and hand the dictated notes and labs to you. Others are very rigid about signing the forms..so sign the darn things!
WRite again, keep us posted about your decisions, your surgery date, etc etc. YOu are in the best of hands with "us" and the facilitators. Such a good site.
Shirleyin reply to: I’m Post OD – Day 5…Pls Share your Comments #1065412Hi Sandy, I am so glad you have your OD behind you! I was very impatient with all docs who said I would not really see the final result of the surgery for as much as two months, and that it would very gradually improve. I wanted it all better NOW!
One thing that did help me, was to take photos along the way, and if you have not done that up to now, it is not too late to start! That REALLY helped me look back to 3-4 week ago, and realize that, yes, I really see a difference.I does take a bit of time, @ 2-3 months, for all numbness to resolve, but it will! I am pretty sure that the pain will go away completely pretty soon (you are doing beautifully for DAy 8!) It is a big surgery!A three wall is bigger than my puny two wall!
” title=”Very Happy” /> It takes a while for energy to come back after a general anesthesia, and I am sure yours was longer, since you have a 3 wall. Most people don’t realize that a general can knock your socks off post-op, in the endurance and energy arena. I said that to people for YEARS, when I did post op telephone calls in my job as a recovery room nurse, but experienced it "up close and personal" when I had my own experience with fatigue after general anesthesia. It’s normal, and the longer the surgery, the more people are surprised at how tired they are. This too, improves by the day!Because we had bulging eyes, we deserve and need the eyelid surgery, and it is a medical condition. IT is also an easy recovery!
Hope your weather is better than mine..steady rain, gloom and cool.
Shirley -
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