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in reply to: In need of support #1171724

Hi Alexis, what you heard about those shots is accurate.
Regarding the “shot” given to dry up lactating breasts. It was given in the 1950’s for I gave it as a student nurse. We used bromocriptine and estrogen. You are correct, strokes, increased BP, clots (which can and do cause strokes) and heart attacks. They are not used anymore.
You have plenty of other things to think about, and this is not even something you are considering/ But there is plenty of valid literature to back this up.

I think you will find it reassuring to talk with a surgeon. All the treatments are there for us to choose, and all generally work, or if they don’t there are other options in the other choices.

i chose surgery, because I was breast feeding. I wanted to breast feed, did not want to quit. I pumped in the hospital, much more challenging in the late 1950’s and early 1960’s, for women were encouraged NOT to breast feed.
My mother or my husband brought my baby over so I could nurse him. He was not fond of the bottle, even with my milk, but I had to wait 12 hours for all anesthesia to be metabolized. What I really did, however, when he refused Similac, was check with the pediatrician, and he said go ahead and have your mom feed your milk to him, and if he won’t take the bottle, just nurse him, he’ll be fine. Which is what I did. My story. I was ACHING with full boobs, and I barely noticed that I had had the surgery. I was all about my boobs and getting that baby over to my room!
Shirley

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in reply to: Just Diagnose with Graves, having a hard time. #1171757

Hi, I am very happy that you are seeing a second endocrinologist. As an ordinary person, but one who has had three pregnancies after Graves’, I really question the statement that your chances of a pregnancy are low. My first pregnancy was age 23, delivered at 24, and Graves’ developed when my litttle boy was 2 months old. After taking Tapazole, I had a thyroidecomy. One of those pregnancies was an early miscarriage.

Check it out with the 2nd endo, or better yet, have a consult with an OB doc. YOU can check, but I don’t think it is regarded at all as a high risk pregnancy. Other than having thyroid labs run now and then during my pregnancy, and having labs on the baby (which is done on every newborn in this country) my experience tells me that you can have smooth sailing, and proceed to breast feed, too. And, there are some medical things to know if you are taking ATD’s.

I think your chances are as good as anyone elses. Of course you would provide your health history of Graves’, and the additional information about your treatment choice, and what meds you are taking now.

As I have mentioned, it certainly is relevant, and your OB doc should be familiar with graves’. Here is pretty reliable link for you to read from the US Department of Women’s Health. Read all of it, for some of the possible complications refer to all pregnancies, not specifically Graves’. But there is a section on pregnancy and Graves’/ Here it is. I think you will find it very reassuring.

Re having Graves’ it sounds like you have found some good and competent docs involved in your care.
Shirley
http://www.womenshealth.gov/publications/our-publications/fact-sheet/graves-disease.cfm#j

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in reply to: Just dropping in after TED orbital Decompression #1170533

Hi, do keep writing. Super sorry. Hope insurance, doctor and plan soon begint to take place.
Shirley

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in reply to: Graves and pre-op – what a mess! #1171743

I totally understand where you are coming from! To clarify, it is very common for another anesthesiologist to be yours for the surgery. They develop the assignments the day before, generally, based on who is assigned where, and who is working. This was a very frustrating visit for you. I am so sorry.
It is not very encouraging, but very few docs are familiar with Graves.
Your son sounds great. And, I am sure you would be giving the same advice to
him in similar circumstances.

Of course you have your surgery scheduled, and want to move ahead with it. Unfortunately, it is too simplistic to find another ortho shoulder doc, and divine that the worker bees and anesthesiologist will “know what they are doing” when it comes to Graves.

My suggestion.
1. Can you ask your endo to order the labs? Just get them, have the endo fax them to the anesthesiologist department for your chart, and if they are really out of whack, ask your endo if he is concerned. I KNOW you want to move ahead with this surgery, and it sounds like it really needs to be done.
2. Or call the surgeon’s office, make the same request? But Might be easier to go through a GP or your doc.
3. Take them with you on the day of surgery.

Don’t be sorry for the rant. It is well deserved. Good for you for speaking up. Even though it was not helpful. What is your plan now?
Shirley

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in reply to: In need of support #1171721

Hi Alexis, I know your mind is whirling. With many good reasons. It is a lot of work to even get to TALK to these docs, get the labs, have a new baby, have these issues to deal with at all. I really am sorry that you have to deal with all of this.
Re your baby-I realize that is not that easy to abruptly stop breast feeding from the baby’s point of view. So I imagine that is a worry to you, too. I am not how big a factor it is in your thinking, but if it is yet another confounding issue, then it is very important to consider. Your feelings about continuing breast feeding, or not, matter a lot. I encourage you to tell your docs where you stand on this when you have conversations re RAI vs Surgery.

Jules gave you a nice list of questions when discussing RAI.

I’d like to give some thoughts for you to use as questions regarding the surgical option. It is possible that surgery is not “off limits” as it stands now, but you do need to gather more information, which can only be determined by your labs, your symptoms, and having a meeting with a surgeon to answer every conceivable question you may have. and that is how you will learn this information. In your case, another set of labs will help a lot to guide the docs.
1. What is the prep for the procedure?
2. In my case, assuming I’d have surgery at the very soonest, ten days after the preparation with the potassium iodide drops, who decides whether it is ok for me to have the surgery, based on my labs and how i feel?

I am not sure how you feel right now regarding hyper symptoms, and if you are/are not taking a beta blocker, and if your heart rate is rapid. All of this matters to contribute to deciding if surgery is an option. But from what you say right now, there is not enough information to rule it out. Your endo sounds really nice, but really, he is not the person to tell you that the anesthesiologist would not give anesthesia because your enzymes are elevated. He’s probably the wrong source for that information. And, with each passing day, your liver labs may be going down. Determining the extent of hyperthroid state you are, requires frequent conversations with a surgeon and the endo and frequent labs. The surgeon is the “decider” on doing the surgery. They don’t want to operate where there is relative risk.
There really is not a formal classification of “endocrine surgeons.” There are general surgeons who focus on certain things that they like to do, and/or simply exclude some procedures so they can be very skilled at the procedures they do perform. Thus, the information you need to know about a surgeon you talk to, (and I think you should include this in your decisions) is one who does thyroidectomies, generally around 50 a year is a good number.

So, I am glad it is only Wednesday, you still have three whole days in this week to maybe learn some more. I have mentioned the surgery thoughts only because I encourage you to explore this, see if there are a couple surgeons who perform this procedure regularly, and if you have some interest in this option, with the ongoing information gathering of your liver labs and your thyroid labs, the person to speak with is the surgeon. If they are concerned about the possibility of thyroid storm in your case, they won’t want to do the surgery. On the other hand, you labs could be fine, and it can be the right choice for you.
Thinking of you a lot, Shirley

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in reply to: Just dropping in after TED orbital Decompression #1170529

Oh darn. I am so sorry. You’ll be learning more from your surgeon soon. I think one thing you might be told is that they can resolve on their own, it takes a while.
I have had several complications in my 9 procedures in the past two years. Yes, I count each eye as one surgery!
Shirley-do write again with an update when you have one.

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in reply to: Recently Hyper #1171712

My information has been that it is 1% or less (elevated liver enzymes with antithyroid drugs.) And having elevated LFTs (liver function tests) is an indication not a screaming statement that you are in serious trouble. Generally, when the drug is discontinued or changed, the labs become normal. There are a ton of other drugs where this is a possible complication, including some anti seizure drugs, which my granddaughter takes. She has these labs every now and then. Agree with Alexis that they should be checked (as mine were 50 years ago, so this is not new information!) A good topic to discuss with your endo. and understand thoroughly, which i am sure you are planning to do, if you have further questions.
Shirley

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in reply to: Recently Hyper #1171710

I took Tapazole, no issues at all. My endo did LFT (liver function tests) along with the thyroid panels when I was on the drug. I subsequently chose a thyroidectomy, which was the right choice for me.
Shirley

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in reply to: Remission and possibly no more children…. #1171704

Hi, I developed Graves’ after my first child. Had surgery, took Synthoid, did not give any of it a second thought regarding future pregnancies. I pretty much considered a healthy 24 year old, back in the normal, euthyroid population. That is also what I was told by the endo and ob docs. I think your doctor telling you to go ahead, and it will be fine, might be based on his knowledge he has???

We proceeded to have two more children, no issues, no complications at all.
I really don’t think it is an issue at all. I had all the energy and enthusiasm needed to have more kids. Not precluding that I am very normal, and having a new baby and a family, has those rare moments when you wish you were anyplace but there! Having said that, I would do it again in a New York minute. I was super happy with my one child, too, but I wanted more. I love having three, and we almost decided to have four,but my husband was very happy with what we had, and did not want to have four children. Myself, I am sorry we didn’t have the fourth unknown person.

Just think of all the people who are pregnant in this world. It would be interesting to ponder how many of them developed Graves’ or any other autoimmune disease after pregnancy. I have no idea. And, this is just my thinking and my experience.

Perhaps an appointment with a geneticist would help you by providing additional information?

Incidentally, I was mad I had Graves’, but have lived very well with it. I was not at all happy that I developed TED several decades later, either.

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in reply to: first steps for eyes #1171534

To Kells1-
THe tear consistency changes with TED, and when that happens there are not as lubricating as they have been and should be to protect the cornea. I imagine the cornea on your eyes might be very dry, thus seem like they are soaking up the drops.
But a big caution about steroids. Several eye doctors explained to me that using steroid eye drops and having oral or IV steroids are completely different subjects. The main caution is about the eye drops. Using steroid eye drops should be used very short term, and under the careful supervision of the doc. So check that out carefully.

Of course oral and IV steriods have their pros and cons. I did have both, with the goal of reducing inflammation and swelling during the active phase of my TED. They reduced the swelling, thus the double vision, for as long as I took the steroids, but as soon as they were discontinued, the symptoms came back as bad as before and worse. They have their place, and in TED, sometimes they help get you over a “rough spot.” For instance, if you have pressure on your optic nerve, short term steroid use will reduce the swelling, thus the pressure on the optic nerve, so further damage is not done, until it is determined that an orbital decompression might need to be done to save vision.
Shirley

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in reply to: Worried & Upset About Liver Test Results #1171660

Hi Alexis,
my thinking is that you are getting very good medical care, and the doc is being very vigilant and conservative with your very small dose of propanolol.
Propanolol is used for various things, generally to decrease heart rate, and sometimes to lower blood pressure. I think it is a good idea for you to follow his advice as prescribed. The things you should be aware of, are a very decreased pulse rate (below 50, as a guideline) or a very low blood pressure
(below 90/60) but with the small dose you are taking, both of these things are a non-issue most likely. I suggest you take your pulse and BP before you begin the drug, so you know your baseline at that time. Also, if you are super concerned, talk with a pharmacist this weekend. In summary, you are in good hands, good care and in this case, the experience of others is so variable, based on all of their health, plus the dosage of the beta blocker, it is not helpful to be concerned about what you hear or read. Whatever he has prescribed after your conversation, is what I would do.
Shirley

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in reply to: Worried & Upset About Liver Test Results #1171653

Hi Alexis, I am sorry it is Friday, maybe you got to talk to someone by now.
The labs which indicate liver function are high, that is why they called you. I imagine your ATD will be discontinued. After that happens, your numbers will probably go down. You will be oK. They are on top of this. Of course you know that I am not a doctor, but when you are not familiar with any of this, it is scary. I have worked in a hospital for years, and haves seen these kinds of numbers before. First thing is to stop the drug, then the labs generally go back to normal. Your docs will decide if they want to switch you to the other ATD. Both of them have this rare side effect. The important thing is you will be ok, liver-wise, and Graves’ wise. Did you talk to someone?
Shirley

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in reply to: Need links explaining Grave’s and symptoms #1171609

Hi, that is a very good idea. I have been trolling articles for you trying to find the “right fit.” I am still looking for one that does not just have a list of symptoms, which is fine, but it is almost too encompassing. You don’t need one that lists decreased sex drive, for instance. What I am looking for, is a description of Graves’, but addresses how it can and does impact our lives, and is very validating. I’ll keep looking. Kimberly has time to check out resources, and she may already know of one. But I do understand what you need. And it is very reasonable to provide information so they can understand.
*If you think back to before you had Graves’, I suspect you (and all of us) did not know one thing about it, and if we knew someone who was irritable, prone to tears, anxious, sleep deprived, etc. etc, BUT that it can be treated, but it takes time. Even WE, THE PEOPLE WHO HAVE GRAVES’ did not know why our behavior changed so radically, and of course, our family members, friends and co-workers, think the same think we are thinking about ourselves-that we are losing it, going crazy, etc. etc.
I hope we find one, and soon.
Shirley

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in reply to: Diagnosed today #1171443

Wonderful!! You have a great internist! I hope your son and DIL never move.
Have a lovely sleep tonight. you are in good hands, you have a plan. Best wishes with your shoulder surgery. I understand, as the years pile up, our parts begin to wear out! I’m older than you are by a couple decades.
Shirley

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in reply to: Future weight gain? #1171594

Hi Patches,
I completely understand how you feel. Accomplishing the BP, blood sugar goals has resulted from your weight loss. Congratulations And what you have accomplished, is a great big deal, and certainly an investment in your health and well being.
And emotional health as well. I’ll let others who have had RAI respond to this, but as I recall, weight has been an ongoing issue. Not 100, 200 lbs. but definitely an issue. They can talk about it, the facilitors probably can give you some nice references to read.

Have you considered surgery? That is what I had. I went from hyper, to surgery, to beginning Synthroid, and my weight did not vary more that 5 pounds over 50 years.

Of course, the other part of this weight/overweight subject is comprised of large portions, Junk food, soft drinks, other bad habits, and inactivity. In my own case, none of these have ever been a problem for me. I have never been a night time eater, which is the big issue for many of my friends who battle weight. I eat pretty well, and for me it is easy to do. For other folks, this is a much harder trip.

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