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in reply to: Liver enzymes #1178195
Be sure to ask your doctor, but the answer is yes. THis is my anecdotal experience from looking at lots of labs in my work.
Shirleyin reply to: Just curious about RAI #1177970I am also done with this thread. Done with the thread, not with individuals.
I wish the best for everyone, on or off this thread. But the ongoing conflict is not my interest.
Shirleyin reply to: Goodbye and so much good luck to all. #1178131Oh my gosh. I am so sorry!
ShirleyI hope you never have to experience TED. I had no idea of its’ existence, until I had visual changes. Thank you very much for your kind thoughts.
Shirleyin reply to: Goodbye and so much good luck to all. #1178129I did not know about the PM’s. I think I do not want to know what was said.
In summary, it seems that mistakes were made. This site, Kimberly, and the people who post, have literally given me hope in the morning, for the past four years, as I woke to another hellish day of TED. It has been my lifeline.Regarding GRaves, which I had many decades ago, perhaps I have rose colored glasses on when I say this, but it is easy for me wonder if my marriage would have lasted, rather than disintegrating, if I, and my husband, too, had the support and affirmations that this forum provides. I was a totally undiagnosed crazy person with a new baby, for about a year. I wish I’d had a Kimberly in my life at that time, plus many of the posters on this site.
I will be here a long, long time. I have received so much, I want to continue to give back as much as I can.
ShirleyGosh, I sure am sorry about this change for you. It is possible that you might be developing TED, and I sure hope that is not the case. It’s been a while since you wrote. How are you doing now?
Shirleyin reply to: Goodbye and so much good luck to all. #1178122wow, mslux!
I don’t have enough information right this moment to see our other posts.
THe most important thing is for you to find the environment that is right for you. I wish you the best of the best. Now, to review some of your posts!
Shirleyin reply to: Just for Fun – The “Off Topic” Thread! #1177847Kitties are great! I enjoy all the neighbor cats!
Shirleyin reply to: Just for Fun – The “Off Topic” Thread! #1177846AMAZING PHOTO!! Thank you! Nice work. No, marvelous work!
Shirleyin reply to: Thyroid Storm #1178018I read all their references. All of them refer to Graves’ and hyperthyroidism.
I still think that to infer that with “any” surgery, that thyroid storm is very misleading information.
The operative consents for all surgeries are super inclusive. But I have never read one that states thyroid storm as a possibility as an outcome or side effect.
The references all refer to hyperthyroidism and/or Graves’.
Shirleyin reply to: Thyroid Storm #1178016Ok, Sue, here you go with a valid source:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001437/
For the record, thyroid storm is absolutely not a risk fro ANY surgery.
Not sure what reference that is, maybe you can help me with that, rondack.What Kimberly said, was that a thyroid storm is a risk if the patient is hyperthyroid. The way she wrote it is clear to me, but may be easily misunderstood. I am sure she means ANY thyroidectomy, which is the topic we are discussing.
Adenur (Alexis) said it pretty clearly, plus some of the other posts. Christina Dee summarized it beautifully.
The goal:
use ATD’s to decrease excess thyroid hormone production that is happening because of Graves’. That is what Graves’ is.As Alexis said, SSKI drops (Saturated Solution of Potassium Iodide) is given before the surgery to reduce the vascularity of the thyroid gland, ie, decrease the increased blood flow (cause of the enlarged thyroid=Graves’.
The beta blockers are used so that you have a normal heart rate, rather than a crazy fast one (called tachycardia, usually over 100 bpm (beats per minute) as defined by the American Heart Association.
So, the whole goal is to get as normal as possible, with heart rate, blood pressure and thyroid hormone.Being hyperthyroid can be life threatening. So goal is to get us safe until a permanent treatment can be decided upon.
Digging deeper”
To clarify, you may have misunderstood this. Surgery does not cause a big release of hormone. But after surgery, we still have thyroid hormone flowing around which was there before the surgery. That is why we have labs.It is realistic and reasonable to be scared of thyroid storm…if a person refuses treatment for hyperthyroidism, and develops the symptoms as described in the NIH information above. Just as it is realistic and reasonable to be scared if you are a diabetic who refuses treatment, to name another good example.
It is my thought that a good surgeon won’t ever elect to operate of a patient who is very hyperthyroid with the extreme symptoms of heart rate and BP out of control. Why would they do that? Better to do the ATD’s first.
Well then, when a person cannot take ATD’s, it is very possible, then a good surgeon might weigh the danger of being hyperthyroid, against carefully preparing the person for surgery as described above. Yes, there are all kinds of monitors in the OR, and the patient would be fine, for anesthesia can control everything. Just like the ER docs would do if someone came in with a racing pulse of 180 and a BP of 180/120. They could manage those two things without knowing the precise diagnosis, even if it weren’t Graves’. They would be doing other tests at the same time if they did not have any information at all. (could be a whole laundry list of stuff, including a hemorrhage someplace or a brain bleed.
So, it is a good idea to talk to your surgeon about all of this. Cause we are not pros here, just plain ole’ fellow Graves’ folk.
Shirleyin reply to: Another newbie #1177988Hi Flora,
yes, I have had the same symptoms and experiences you are having.
You are brand new, and the whole deal is overwhelming and discouraging.
But, like the rest of us, you will be better again, and like all of us, it takes too long, not matter how long it takes! Easy to be impatient about all of this, and even more so because we are hyper.Kimberly’s comments about calling the doc’s office, asking them to call you if they have a cancellation, is good advice.
If you read some of the posts on this forum, you will find that most of us get copies of our labs, and there is definitely a learning curve for you to begin to understand what these labs mean.There really is no way for anyone to answer your question about how we were doing on 5mgm. As mentioned in Kimberly’s post, the initial dose is a guess, and that combined with your labs, combined with HOW YOU FEEL is the guideline on whether to increase or decrease your dose.
In super simple words, our thyroid has gone amuk, and shot out too much thyroid hormone, which gives us these terrible symptoms and we feel like crap. So the first thing to do is to put a brake on the crazy amount of hormone that is floating around, making it less, so we begin to feel like a human again. Too much hormone causes all the symptoms you have, plus some others, feeling hot all the time, having a big appetite, but losing weight, and having a very fast heart rate. The doc needs to know all this stuff. I suspect he began with a small dose. Frequently, we do not get enough instructions and information when we see a doctor.
I encourage you to keep your own file at home of copies of all your doctor visits and all you labs. **VEry wise, too, to arrange to get your labs before a doctor visit, so you have something to discuss.
I encourage you to call the office, leave a message that you are not feeling better at all, and list the symptoms you stated in your post. Ask them to have the doctor call you, and/or ask if your recent labs mean that you should have a change in your Tapazole.
Beginning treatment with an ATD (anti thyroid drug) initially is pretty much guess work on the dose, and the decision to increase or decrease the dose is based on labs (not just TSH, but T3 and T4, as kimberly said) AND how you are feeling.Are you going to a regular primary doctor, or to an endocrinologist? Does this doc know, or are you new to each other?
There are good references that have been posted on this website for you to begin to learn more about Graves’. It is really helpful to begin to understand it, and it does take a while to have a feel for the whole process and the treatments.You have a lot of new friends here, and welcome to this reliable and great site.
ShirleyHi Molly, I’m next door to you, so to speak, in Washington!
Cross the doc you saw today off your list, if he belongs on any list, it would be a completely different kind of list (if you get my drift!)From reading your post, i’m thinking that you and your endo have been trying all this time to get you to the right place with ATD’s (ie methimazole.) But it does seem that this is not working well for you. I am wondering a few things. ‘How often do you have thyroid labs? Do you keep copies of your labs? Maybe copies of what your endo dictated at your visits, so you can review them?’ I’m thinking you need an appointment (labs before the appointment) as soon as possible.
I am asking, ’cause, I am wondering if your endo adjusts your methimazole at all based on your labs, or if you labs have been stable (I know YOU have been all over the place, just wondering what your labs are doing. Does he know your symptoms, and how you are doing??? The way you are living right now is not OK. It can be better. Have you considered that managing your Graves’ with ATD’s for the rest of your life may not be the answer for you? Sounds like has never been good for you, that you have never really gotten back to feeling like YOUlAs Kimberly said, there are three treatments, and you know them. Have you ever considered surgery, having a thyroidectomy, as an option? If you read the forum, you will see that many of us have chosen that option, including myself. I was very happy with choosing surgery. And, you know that ATD’s and RAI are the other options. You don’t want RAI, and it seems that the way you are being managed now is not working well for you at all, that you feel crappy, and are really ill with Graves’. What does your endo say about all of this?
I am wondering if you need a fresh set of eyes evaluating you, like another endo for a 2nd opinion. Have you considered this?
For you, at this time, the LAST thing you need to do is to try to work out.
You are really sick right now. I am so so sorry. Super tough to work full time at your demanding job, feeling the way you do.There are some good references for families of Graves’ patients, I am hoping Kimberly sends them your way. Your family, and even you, are comparing you to your brother, and the fact that he is doing well. But this is you, and you sure do need help to get you back to having a good life. It is definitely possible. Absolutely, you do NOT have to continue to live like this.
Do write again soon.
Shirleyin reply to: Just for Fun – The “Off Topic” Thread! #1177831Sue, I LOVE a turtle! Her name is Isabella. Such a sweetie! Here’s her story.
My daughter is a MSW, working with very troubled kids in a residential facility.
One of the kids acquired a small turtle. But my daughter (who has three dogs, a cat and a rabbit) was concerned b/c Isabella was being neglected. Over Christmas break a couple years ago, she brought the turtle home. Isabella began her life in an aquarium with a heat lamp to keep her warm, outgrew it,
then outgrew several more living quarters. Got a cage outside, broke out of it, wanted to be free to wander. Now, she lives outside all the time, but is fed regularly her favorite foods, kale, bananas and other green leaves. We thought she was a desert turtle, and Jane was planning to take her to a turtle rescue place in Joshua Tree, Calif. Isabella lives near Pasadena, ca. That is when she found out she is an African tortoise!!! She will love to be well over 100. She make a nest for herself underground, and comes out on warm days. She weighs about 25 lbs now (from 4 ounces) and now my daughter is wondering if she should consult an attorney, make trust for her! Neither daughter is interested in hauling Isabella around for the rest of their lives. So that is her story.
Shirleyin reply to: Question about your uptake scan #1177740Hi,
i have had several scans, with no directions at all. I have sent many people for scans, with no directions regarding what to do/not do, eat/not eat.
I suggest you give Nuclear Medicine a call, or Radiology, wherever you went,and review it with them, so you know the right answer.I did a bit more checking, and some places say to stop eating kelp, and/or vitamins containing iodine. Perhaps some docs or departments tell patients to stop taking vitamins a few days ahead of time, for this reason. It certainly makes sense, to have a valid test.
Another suggestion is to pose the question, then put a comma, and say uptake scan,directions for patient, comma, Mayo Clinic (or some academic center)
Will be interesting to hear from others.
Shirley -
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