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in reply to: Diagnosed today #1171441

Hi ncpatches,
I second that thought! You have a GOOD doc, and you are getting good care, with caring about you, being a good listener, you have hit the endo jackpot.
I am so happy for you.
Shirley

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in reply to: Methimazole & Symptoms #1171558

Hi Alexis,
Nice to hear from you. I’ve been wondering how things are going for you. Glad that there is some improvement in your hyper symptoms, and super glad that your heart rate is back to baseline.

I know your doc said to wait a full 8 weeks, but you are having an increase in symptoms. I suggest that you call the endo, (if you can contact him electronically, all the better, for you will be able to be more specific,) but leave the message that you feel some of your hyper symptoms are returning.
It seems like it is really bothering you, and certainly worth a try. The result will be, I hope, that you get your labs drawn earlier. It is very possible that your dose might need a little nudge up. And the endo can answer that with labs and your symptoms.

This is the same drug I had when I was hyper. My own experience was that the endo told me that it was very important for me to call with any significant changes I noticed, especially after being on the drug 2-3 weeks, after the existing circulating thyroid hormone had been metabolized. He said to call anytime I noticed significant changes, either hypo or hyper, even if it had been only two weeks, so labs could be drawn. He started me on a very small dose, but then increased it, for, like you, my heart rate and tremors improved, but insomnia, not feeling “right” at all, heat intolerance, and other symptoms that I don’t recall anymore, remained. So I did call, he wanted labs drawn, and increased the dose of the med. It definitely is a balancing act, getting us “down” from being hyper, but not letting us got TOO “down” so we get hyPO.

I am not sure how much you are worried about thyroid storm, or simply asked the question. as Bobbi said, it is pretty much limited to untreated severe hyperthyroidism. I am pretty sure if you asked your endo about that, he/she’d simply say it is not an issue in your situation.
Thyroid storm is a medical emergency. I’m enclosing a link from NIH so you can read about it. Here it is.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001437/

Alexis, I really understand so much how discouraging and frustrating it is not to have the initiative, energy, enthusiasm and interest to move on with your busy daily life with your children. It is very, very hard. BUT you can have a lot of hope now, for you are diagnosed, and beginning your treatment, and you WILL become yourself again, back to health. It is a bit of a slug, though, and I tend to want it to happen RIGHT NOW!
Do write again.
Shirley

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in reply to: Latest Test Results need expert help:) #1171296

Hi Lilly, here I am again, to say that Bobbi has done a very good job with her post, also clarifying a few things in my post that were not very clear.

I learned from your post that you already have a diagnosis of Graves’ from your endocrinologist. So I pretty much reflected back to you what was already established by your endo, by echoing that you do have Graves’. He told you, you told us. As Bobbi said, when we have Graves’, the path to feeling well again, are the treatments she has already mentioned. There is no other way to good health again, and being untreated is downright dangerous.

I suggest you have another appointment with your endo, learn from him/her why those two treatments are recommended for you. Since you are currently on an ATD, you are already on the way to good health. This is the first step in treatment, as you have already learned from your endo.

I have a suggestion for you, as you are just learning about Graves’. When you are in the office, tell them that you would like to begin your personal medical file at home, ask for copies of your visits and your labs. You will probably need to sign a medical release of information form giving the office permission to send it to you.

I certainly understand why you would like a simple way to treat Graves’.
But we are so fortunate to have the options we have. There are a lot of people who were in your position at the beginning of Graves’ who are not posting anymore, because they have followed this path, and living their life just fine, living very well without their thyroids, thanks to the thyroid hormone that we can take.
I wish you the very best with your decisions.
Shirley

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in reply to: Latest Test Results need expert help:) #1171294

well, other than the fact that you do have Graves’ according to your labs, I am not sure if you have been taking ATD’s or not. Are you? I think it is nice to have vitamins and herbs if it is important to you to do so. I get my vitamins from food, and I don’t take herbs unless it is a herbal tea and I don’t want to stay awake. i eat very well, so I don’t vitamins, except Vitamin D. I live in a place where the sun doesn’t shine very much!

I feel pretty safe in saying that, other than you should be very aware of the interaction between the herbs you are taking, and other meds you are taking, that they won’t make a bit of difference in the course of Graves’. But this is my opinion.

I feel safe in saying that you really should treat your Graves’ with ATD’s, and that it is not safe for you to not take them and hope you get better. Remissions are hard to identify. Also, the term remission, by its’ definition, means the illness can recur.

I am not sure how you feel. If you are taking ATDs did they help you? Generally, as you know if you have been reading this site, after we are not hyper and feeling better and are healthier after taking the ATD’s the three choices for treatment are continuing with ATD’s, RAI or surgery. Has your endo suggested the latter two because the ATD’s aren’t working for you?
Or is he concerned about the lifetime, or even long term use of ATDs.

Sorry you did not get a response earlier. i just caught your email. It will be at the top now,a nd maybe one of the facilitators will respond also.
Shirley

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in reply to: A different adverse effect of Methimazole? #1171522

Hi Alexis, great research on those two drugs and breastfeeding. I am out of that world, so not as up on that. I loved feeding babies. I felt so sad when I know I would never nurse (or the baby would never nurse) again!
Tammy, so sorry about the mouth issues. I am not a bit familiar with that. Sure hope it resolves.
Shirley

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in reply to: A different adverse effect of Methimazole? #1171519

Hi Tammy, PTU is the other ATD. It is propylthiouracil. This is what I took when I was hyper. i got along fine with it. Generally, methimazole is the first line drug. PTU is contraindicated in pregnancy (and thus, women who do not realize they are pregnant.) Breast feeding, too I think, although might be ok after 4 hours of ingesting by the mom. And, it has the same liver warnings as Methimazole.

Here’s a pretty good link.
http://www.drugs.com/pro/propylthiouracil.html
Now it is used when a person cannot tolerate methimazole. It is not used in kids, more liver issues withe them.
Shirley

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in reply to: Diagnosed Tuesday… Where to go from here… #1171500

I suggest you go to your GP, as catstuart suggested. is that doc the one who ordered the labs? I think, with your symptoms, you should not go unprotected for two months without a beta blocker and an ATD. Can you discuss this with your GP? I also suggest that you call back, say that you have DIAGNOSED Graves’, and you are very hyper, ask to be seen earlier for that reason. Leave this message, with your symptoms (email is best if you can do this, and list as you did in your post) as ask to be seen asap to begin treatment.

There are lots of reference on the three options, their pros and cons. Many on this website, from the experiences of others, and I am going to lean on Kimberly to give you some good references, cause I am walking out the door right now for the evening.
It is really a relief to find out that there is a reason we feel the way we do. And a bigger relief to know that we can get better again.
Shirley

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in reply to: thyroid support boards #1171468

Hi Matthew and catstuart,
I’d like to give you some encouraging news from my own experience with Graves’ in the hyper stage. I experienced hyper in a very cold Iowa winter, and yet again, when I had a trial going of ATD’s in the hot humid Iowa summer. Even though it was around zero degrees most days, I was marching around our barracks (married student housing at a university) in shorts and a tank top. I kept our home around 55 degrees, frequently left the door open to cool off. NOONE wanted to come to see me. My husband was so cold. I was a total freak and totally freaked OUT with my sensitivity to heat.
***smile. When the ATD’s kicked in, I was a different person. Normal like most people. Had the thermostat at 72-75. Wore sweaters. All better.

THEN, I was doing so well, that we weaned the ATD’s. I became full blown hyper almost immediately, with all the heat intolerance back full guns. But now it was in the 90’s and humid as hell in Iowa. I was MISERABLE. Just like both of you have felt. It was hell. But at least, I was not freezing out all the people around me. We did not have air conditioning.

Back on ATD’s (tapezol) In three weeks, all better again. Normal bitching about the heat. But not a crazy person like I was before. Soon after, I had a thyroidectomy.

Now, many years later, probably because I am much older, I tend to be cold, rather than warm. But the extremes you are both experiencing, probably will dissapate when you are on the other end of Graves’ treatment.
I did find,that when we decreased my Synthoid recently, that I was COLD! Surprisingly, being pathologically cold was as bad as being pathologically hot!
We tried to do that ’cause my labs show that TSH is usually suppressed. Either T3 or T4, can’t remember which one, was a little high.

Matthew, I am sorry you have this period of time to wait to begin your treatment. but the time will pass, and you know all the information you need to know. Thyroid cancer is very, very rare, and unrelated to Graves’. Many people have nodules in their thyroid gland, and most are benign. If you can, I encourage you to think about getting better with Graves’, and realize that thyroid cancer is soooo far out there, it is not even worth thinking about.

And, it is very treatable, and rarely spreads.
Matthew, If you move, I have the perfect spot for you! Seattle, where I live!
People whine about the heat here if it hits 75! Which usually happens a few days in the summer. Summer for us is in the high 60s low 70s. And beautiful.
Shirley

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in reply to: The thyroid and gluten #1061157

To Harpy.
A couple responses to your statements. I am responding because your posts appear to the casual reader that you are a formal researcher in this area. I would not want anyone to “learn” that warfarin has anything at all with diabetes. I do believe insulin makes more sense in your analogy.
Please note my correct spelling of the word “warfarin.”

“Like the obese heart patient, telling the doctor to hurry up with his warfrin script, I’m running late for the all you can eat “Burger Bash”, outcome is predictable.”

Your second suggestion:

“So rather than the std old line, what I would like to see is the “smartest guys in the room” to do a proper long term study to show categorically that there is absolutely no connection between Gluten intake & Thyroid disease.
Not too much to ask is it?
Simple 100 Thyroid patients, still take meds, go gluten free healthy diet for 5 years and their progress monitored, end of 5 years all healed/none healed/50% healed whatever, or is funding for preventative measures that don’t have ongoing drug sales unavailable?
Sorry bout the rant, but it does rile me sometimes.”

My response.
Harpy, there is a lot for you to learn about doing a long term proper study.
Again, I am concerned that the readers of this site might view you as an academic expert, rather than, like the rest of us, you are stating your opinion. But when your opinion kinda reflects the “answer” to a topic, then I need to respond. Your proposal is simplistic, and that is not how we learn from a clinical study. it would not be valid. It doesn’t even have a control group. You seem like an intelligent guy, really ready to do learn, so I suggest you take two or three years of research methods classes. After you learn how to design a well controlled, evidence based, well designed clinical study, you can write a proposal, and find a principal investigator to conduct it.

To do a clinical study
1. A population size of 100 is very small.
2. The study you propose has no control group
3. You begin with a hypothesis
4. There is so much to control in the study. Age, gender, health history, etc etc.

I am not an expert, either. But I have done one clinical study in the area of cardiology. Guess that is why I know how challenging and difficult it is.
Shirley

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in reply to: thyroid support boards #1171465

Hi.
I think this site has very good due diligence and screening, regarding the posts we read here. My suggestion to you is to (either)change your name (if catstuart7 is used for many sites, or your email account.) Or, establish a new email account on one of the free email websites, gmail, hotmail, google, and have it exist solely for this site.

I have occasionally looked at the Yahoo group site for TED. It is much more vulnerable to spam, and you are never quite sure who is posting.

I think I would probably follow my own suggestion if I wanted to post something that I did not want associated with my name and where I live.
It is such a good site, I hope you find a way to use it with any subject. PM’s are another good way to communicate with a specific person rather than everyone. One of the benefits of the sites is sharing experiences. But, of course, there certainly is a place for private conversation, too.
Shirley

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in reply to: thyroid support boards #1171464

Hi.
I think this site has very good due diligence and screening, regarding the posts we read here. My suggestion to you is to (either)change your name (if catstuart7 is used for many sites, or your email account.) Or, establish a new email account on one of the free email websites, gmail, hotmail, google, and have it exist solely for this site.

I have occasionally looked at the Yahoo group site for TED. It is much more vulnerable to spam, and you are never quite sure who is posting.

I think I would probably follow my own suggestion if I wanted to post something that I did not want associated with my name and where I live.
It is such a good site, I hope you find a way to use it with any subject. PM’s are another good way to communicate with a specific person rather than everyone. One of the benefits of the sites is sharing experiences. But, of course, there certainly is a place for private conversation, too.
Shirley

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in reply to: The Shakes #1171367

Gina, so nice to hear from you. That is very good news. Glad you are taking this action! You are “one of us,” and you have a ton of new friends!!! You are NOT alone in this!
I don’t imagine you could get an appointment much sooner, but I suggest you consider calling back, telling them you have this appointment, but you did not mention that you have untreated Graves that has been diagnosed, and you are in the hyper stage. Gina, what is your pulse rate now? Ok with the beta blocker? If you say that, you might get an earlier appointment. Be ready for the fact that the voice who answers the phone, may not be medically trained, so I suggest asking to leave a message for the endo, and/or ask to speak to his nurse with the same message. If you prefer, I suggest you ask them to call you with any cancellations to see if your schedule would fit taking that appointment. That is a long shot, though, for the time scheduled for your first appt will be longer than the time for you subsequent appts. Maybe we can help you develop a list of questions to go with your list of questions!
Shirley

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in reply to: The Shakes #1171363

Gina! While you are obsessing and worrying about what treatment to take, PLEASE begin your ATD’s and take them faithfully. Do not skip doses. Why is this important? For the same reason that our pancreas knows how much insulin to produce. But, when a person has diabetes, they have to TAKE insulin, to supplement the insufficient amount insulin that is not being produced. Just like you may end up taking thyroid supplement, thyroxin, for the rest of your life. It is essential for LIFE. On the other end of the spectrum, if a person takes TOO MUCH insulin, that also is a very serious situation. And the action taken if there is too much insulin, is to give dextrose. You will be so amazed at how much better you will feel. But it is more that feeling better. Equally important is that your whole body is in “overdrive,” and this is very harmful.

Really, Gina, you could be hurting yourself for the rest of your life.
You hate the way you feel. You know something is terrible wrong with you. You do not want to live like this. The sooner you begin to accept that in all probability, you will remain like this without beginning your treatment, the better off and safer you will be.
We are so very fortunate that enough is known about Graves’ so that we DO have options of treatment.
I am not being a drama queen. This is really the way it is.
None of us liked this at all. Who would? But we would like it less if there were no treatment, that there was no chance that we would feel like ourselves again. And we can.
Look at my Graves’ and TED history at the bottom of my post. Parts of this time have been hell. I could hardly wait to take those pills, and know I would not have to be sick and feel terrible the rest of my life. It was affecting my marriage, my job, my school and my health.

At least we have choices. There are many illnesses that have no answers and no cure at this time. Continue to write on this website, get support here, and take your darned ATD’s. You will see how much better you begin to feel.
Then you can make your decisions about what treatment you want, and you will be in a much better position to consider this after you are no longer hyper.
Shirley

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in reply to: Diagnosed as a child..? #1169234

Hi Alexis,
generally, things go along just fine, and you do stay on the same dose for years on end. Short story made long by the following conversation, when the thyroid is gone, the pituitary gland does not have a gland to regulate. So, the doctor and you do that, by how you feel. But it happens, especially in women around hormonal changes, that you just don’t feel “right.”
Remember, before all this Graves business, the body does small adjustments all by itself, and we are not aware of it. The anterior portion of the pituitary gland senses how much thyroxin we need, and it sends it to the thyroid gland. Just like the pituitary gland regulates growth, and lots of other stuff. If you feel good, and most people do, it is working fine. But if you feel lethargic, and begin to gain weight, and you know it is a change, hopefully, the doc will check thyroid levels, in both men and women. But much more common in women.
So, without a thyroid gland, the pituitary gland cannot do those subtle changes to keep us feeling “just right” as it did when we had one.

That is the time to see your regular doc or your endo. I have thyroid labs every year or so.

Sometimes, women (especially) end up on thyroid hormone because they have been tired, or maybe some other signs of hypo, end up on thyroid hormone. In this case, it simply is not working quite right, and the thyroxin that is being produced, is not enough to maintain an optimal euthyroid state.

The big message is that the body does it in a feedback look from the pituitary gland to the thyroid gland. When it is gone, the endo and you, based on how you feel and your labs, get it right with the dose of thyroid hormone we take every day.
Shirley

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in reply to: Complications of Surgery #1171425

My comments are primarily to reflect what Bobbi has already said.
As in many surgeries, “parts” are identified. In this case, the recurrent laryngeal nerve is identified. There is one on the right and one on the left. If you go to a reliable anatomy site of the throat, you will see them.
It is listed among the remote complications of the surgery. In every surgery, there are arteries, vessels and nerves that need to be identified. I had a thyroidectomy with no problems. Some people have a hoarse voice for a day or two. I did not.

This is certainly true in TED procedures, especially orbital decompressions (OD), cranial nerves, optic nerves, to name a few.)
stabismus (eye muscle) surgery. Same situation.
In abdominal surgery, there is a whole bunch of stuff that must be identified.
Arteries, veins, nerves, bowel, numerous organs, etc.
In prostate surgery, there are many nerves and vessels to work around.

I am mentioning the above only to say that these complications are rare when you have an experienced surgeon. And stuff can happen, with any procedure.
A colonoscopy, a cardiac angiogram, and more.
Would I do my choice of surgery again? Yes. Might another person chose not to have surgery? Yes. There are complications with each choice, most of them very rare and very remote.
Shirley

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