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in reply to: Wish me luck #1062753

Hi, it’s nice to hear from you again! I have learned that in the past, that remission is usually defined as at least a year.
Glad the labs say that you are–but how do you FEEL? Are the hyper feelings gone? Do you feel "just like you" again?
Hope so. Best wishes with your goals!!
shirley

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in reply to: Cousin’s have Grave’s Disease #1062112

Hi, I think your cousins would profit from joining us! This is a very accurate and supportive site. They will not feel so alone, and will be writing to people who "get it" We are all at varying stages of Graves. You’ll see this if you read a few posts.
The word "medication" can mean many things, depending on where she is with Graves’. It is also important for both of your cousins to have and endocrinologist involved in their care at this time. But I am not sure if they are at the stage of anti-thyroid drugs and beta blockers (usually given when people are first diagnosed, and very hyper)
After the person is at a more balanced and healthier state with their thyroid (called euthyroid) or at least not dangerously hyper anymore, there are three treatments, and all of us pretty much have our own reasons for choosing one of these treatments, as Kimberly discussed below.

Thanks for writing for your cousins. They are lucky to have a concerned cousin like you!
Shirley

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in reply to: Tsh #1062149

Ski wrote a great and informative answer to your questions about how all this works!
I think I would ask your endo about the combination of thyroid hormone and birth control pills. I suspect that it is not a problem. Most of the women who have Graves’ are childbearing age. Even better, ask you pharmacist.
Shirley

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in reply to: Teenagers? #1062152

Hi Sophia,
I know that there are other teenagers on the board. Try different words in the search engine, maybe you can ferret them out and read their posts. I’d begin with the word "teenager."
Shirley

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in reply to: taking Levonyxl #1062189

Bobbi, you said that so well, in a much shorter form! That is a very good summary of "us!" It certainly does take time to recover from the insult to our bodies! Regarding the labs, I think that the more we understand and learn from our docs, the better. So I simply meant for her to ask about the labs, and the reasons for each test. Knowledge is comfortable and reassuring for me, so my endo knows this and he does explain the rationale for labs he orders, and what he thinks about. I like this very much. But this is just my experience.

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in reply to: taking Levonyxl #1062187

Hi,
I am writing to address taking the replacement hormone. I take Synthroid, but I think they are similar.
This is what I do. And one the most imperative things to do, so that labs reflect what is really going on, is to be consistent.
I take it in the morning, first thing, with a glass of water. Frequently, I have already gotten up sometime in the early morning to give my bladder a break! So I take it then if I am up anyway.
I do wait 1/2 hour until I have coffee. I use some 1/2 1/2 because that is they way I like it!
Generally, I do not eat right after I get up, anyway. So waiting 1/2 hour after the replacement hormone is not a problem for me.
I DO wait until after 4 hours before I take vitamin C and D, and multi-vit. I also take fish oil most days. When I take the supplements, is pretty much random when I think about is, as long as it is four hours after my Synthroid.

You can check my regimen out with your pharmacist, too. This works very well for me.

I would ask if free T3 should be with your thyroid panel. I know that my endo always orders it, but pretty much uses how I feel and the TSH for dose changes. But he does consider it, too.

It really has been a very short time since your RAI, and like everything associated with Graves’, everything takes way too long, especially when we feel crappy.

Re diet, I eat what I want, and as long as the thyroid hormone has a chance to metabolize for 1/2 hour before eating, I pay no attention to my diet, as related to Graves’ one way or the other. I would not worry about that. There is a lot of evidence that a high fiber diet is healthy for us for a number of different reasons.

Re how you feel, being cold is associated with being hypo, as you know. I hate to say this, for I have had the same experience as you, feeling cold, and having labs reflect hyper or normal. But it all takes way too much time, and there is not much we can do about it, except report how we are feeling, and struggle to get the right dose for us. And that means that labs must be drawn at LEAST six weeks apart, if not two months, to reflect what is really going on with your thyroid metabolism. Otherwise, dose changes may be made on results that do not reflect what is happening in your body.

It is easy for friends and family NOT to understand any of this. It really does help me to reflect back on when I WAS IN THE NORMAL POPULATION with none of this crap going on, and try to imagine trying to understand it in someone else. This thought helps me realize why this website is so valuable, and why nobody "gets it." There is no way they can really understand. And our symptoms are not pleasant for us, and frequently not pleasant for those who love us. They can try to be supportive, but they really cannot understand how hard it is to have graves’. But remember, YOU WILL get to a normal place, and "feel like you," and remember at the same time that it is slow, frustrating and you don’t feel great until you get there!

Weight. Try to look at all of this over the long haul. Weight gain over two weeks, whatever it is, not not much to use as a reference. If you feel crappy, you are probably not as active as you usually are? Try to look at 3 months from now, and begin to believe everything will be better for you…(:
Shirley, who has been there, done it, and am still doing it, as we all are!

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in reply to: lab results from yesterday #1062227

You need to wait until you don’t have much thyroid hormone circulating around. Not a good surgical decision to do the procedure when you are hyper. You probably know that.

I think I asked you questions about Pradaxa, cardiologist, endo, etc? I do suggest you ask someone why this is prescribed, unless you already know that. It was not clear to me if the endo prescribed it short term, or if a cardiologist has prescribed it for other reasons unrelated to Graves’.

Three months is a long time post RAI, but you know that. I am sorry that wait is so long before you can take action on the next step. I understand you want to get your life back, and get DONE! With graves’s, you are never really done, but you are kind of done, after you get the right dose of replacement hormone, feel good, and have your labs tested now and then. Things change with age and circumstance, sometimes.
Shirley

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in reply to: impatience and circulating hormones #1062231

Hi Ely,
We all feel that way. It is totally hard. But instant gratification, and quick decisions about treatment of Graves’, are not compatible. Unfortunately, the opposite true. It really is. Not sure how post partum you are, but I had Graves’ during pregnancy, and full blown super hyperthyroidism after delivery. I was a nut case, both because of being hyper, plus being a new mom with fussy baby, breast feeding, job, etc. etc. It is super hard.

BUT YOU WILL BE BETTER. There are slow steps we have to go through, but there is hope to believe that you will become the "normal you." So hold on to that thought.

I do not know where you are with graves’. Have you had ATD’s and beta blockers? Have you any treatment at all? OR was this diagnosed when you were pregnant?

It is very good idea to get copies of your labs, and the dictated notes of your endo. Just ask for a patient release of information form at the front desk, releasing to yourself. Have the office mail or fax them to you, whatever is fastest. That will help a lot regarding feeling uninformed, and waiting for information.

So, educating yourself about Graves’ and labs is important. If you are experiencing tremors, you aren’t normal, regardless of the labs. Diagnosing where you are is a COMBINATION of labs and your own reporting of what is going on with you.

It’s pretty difficult to say much else. WRite with a lot more info about when you were diagnosed, etc. etc. etc.
Really, it is the "tincture of time," plus meds, plus your reporting of how you feel that will answer your question.

I totallly understand not being patient, but it is not very helpful. When you DO get all regulated, and are taking thyroid hormone, the labs need to be at LEAST 6 weeks, and it is better to have two months, to know where you are with you dose of replacement hormone. Meds are adjusted by labs and how you feel. You should be getting TSH, T3 and T4. You may be having those results without knowing it. It tells a more complete story.

Congrats on new baby. Boy or girl? Calm or fussy?
Shirley

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in reply to: I have some questions #1062234

Hi Suz,
From you wrote, I am assuming that you have a history of afib, an a cardiologist is following you, and has prescribed Pradaxa.
Pradaxa is a drug that was approved by the FDA in 2010, as an alternative to Coumadin (warfarin.) They are both anti-coagulants, and it is hoped that some of the side effects of Coumadin (the main one being hemorrhage if the anti-coagulant is too much) so Coumadin requires very frequent labs for clotting factors.

But perhaps this is not the case at all? Maybe your endo prescribed it? You are pretty far out from your RAI, so your cardiac event is less likely to be attributed to remaining circulating hormone. But, as you mentioned, some people do not get the adequate dose of I 131 to destroy the thyroid gland, sod it certainly IS possible that you may still be hyper.

As I recall from this board, there have been a few people who did choose surgery after a "failed" RAI, meaning that they were still dealing with being hyper. I think that some people did decide to have a repeat RAI. Try different words and phrases in the search engine, see what pops up.

WRite when you get your labs!

If I were in your position, I would opt for the surgery. But as you have learned, all these choices are up to us, depending on the availability of good radiologists and surgeons, and thinking it through for yourself.
Not sure how old you are, or if you are thinking about a future pregnancy, etc. etc.
Shirley

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in reply to: first dose of replacements! #1062238

I am not aware that the dose of thyroid replacement is related to weight at all. I believe it is based on labs and how you are feeling.
I look forward to other replies on this subject. Of course, the rest of Kimberly’s comments are right on,and very good ideas for all of us. And the rest of the US population!
Guess I will check out NGDF facebook. Haven’t done that yet.
Shirley

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in reply to: Hi, I have graves/hyper! I had labs done yesterday need help #1062241

Hi welcome to our world!
I am biased, but I suggest you stick to this board. I think you are being treated very appropriately, and the ADT’s and beta blockers are doing their job, and you feel better. Your pcp is doing a great job, and has some understand of Graves’! At this stage, you do have a lot of labs, for the goal is to get you to feel better, be less hyper, yet you don’t want to get so much ATD’s that you become hypo. Later, your labs will be (and should be less frequent.) Yes, your T3 is low, also your TSH, which means you have too much thyroid hormone circulating around, and you do have Graves’. You are in a place with Graves’ where labs and you will be changing pretty frequently. Yep, the TSH and T3 indicates you have hyperthyroidism, but that is not puzzle to anyone. I think the person who told you that is a bit of an alarmist in the context that you got that info.
As you may have learned by now, the first thing to do is take care of YOU and your symptoms of feeling like a crazy person, feeling hot, etc. etc and all the other symptoms. The beta blocker is to control your heart rate and protect your heart.

On this board, the facilitators don’t interpret your labs. Of course, most of us learn a lot about our labs, and the range of labs for our particular labs. The ranges vary slightly, depending on the internal controls of individual labs. My lab for t3 is 78-178m so the range is very wide. However, when I was hyper, my T3 was similar to yours.

I suggest you keep in contact with your PCP and have labs and keep track of how you feel. May 18 is five weeks from now, and this is too long to not be in contact with anyone. so keep in good touch with your pcp who is looking at you and your labs.

Not sure what you have been reading, but achieving remission is a big subject. Some of the people on this board, and some of the facilitators, are taking ATD’s to manage their Graves’. The definition of remission is if the ATD’s are discontinued, and a person remains euthyroid (neither hyper or hypo) for more than a year. And it is always possible that Graves’ will recur. There is a nice and simple discussion of this on the Johns Hopkins website if you would like to read it.

So, as you will learn from people on this board, and from your own research, the three choices of treatment AFTER you become euthyroid from your orginal onset of Graves’, are:
ATD’S
RAI (radioactive iodine
Thyroidectomy
The goal of the last two is to eliminate your production of thyroid hormone,and then manage it with thyroid hormone, which we take for the rest of our lives. All people with Graves’ choose one of these three options for their own personal reasons, plus their geographic access to docs who have a lot of experience with RAI and/or surgery.

We will always have Graves’. Others on the board can address ATD’s. I think mamabear is either on ATD’s for quite a while, or perhaps she is in remission now. Put her name in the search engine, and read some of her posts.

So even though you have had graves’ only a few weeks, it sounds like you got diagnosed accurately and promptly, you are being treated appropriately, and you have already decided your want to have a go at ATD’s. There is a lot of good reason to feel very good about your experience. Do write again. YOur PCP ROCKS! I look forward to hearing from you after your endo appointment or before.

Again, yes, your T3 is low. No big deal. You have newly diagnosed graves. It’s ok.
Shirley

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in reply to: Recently Diagnosed! #1062259

Hi Sher!
Use you energy to get well and enjoy the posts right now. There is Plenty of time to pay it forward in the future!
Just keep writing with your questions, and do try to use the search engine. Try different combinations of words and phrases, like "new to Graves" "just diagnosed," see what pops up!
I am TIRED! Going to bed now. Plenty of time to learn about labs. I am still very thrilled and happy for you that you have such good resources and got a diagnosis right away! You are miles ahead getting better with this good beginning.
Shirley

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in reply to: The Rollercoaster. I think my thyroid is posessed. #1062286

Hi, I am going to address just a few things in your post.
If you have Hashimoto’s and Graves’, I think it is well worth having your situation reviewed by either you endo, or going for some good second and third opinions. Also, put those two words together in the search engine, and you will be able to find others who have your situation. It gets more complex to manage with both conditions going on.

You can ask your doc, and do some evidence based research on this, but the studies I looked at regard strenous exercise and the relevance to thyroid production to be a non-issue in terms of how you feel, or a need to change treatment.

Lab tests. Your TSH was high, which means you might have a too LITTLE thyroid hormone, which is why he increased the dose. That was the right thing to do.

Re testing. There is no useful information to be gained by lab tests any more frequent that six weeks, and two months is better. As a matter of fact, it would be poor medicine to make decisions based on frequent lab tests. For it would not represent what was really going on with you.

Good for you, running and racing! Such a healthy thing to do~ However, it does depend on where you are with Graves’ and Hashi. Since you are presently on a roller coaster, and not at the "sweet spot’ you want to be with your meds, I suggest you check with yourself and your doc, and this is not the time to push and stress your body to the max. But cut down quite a bit on your runs. Try to take it a bit easier while you get your meds and you on a more even plane…
Write again!
Shirley

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in reply to: Recently Diagnosed! #1062255

Hi Sher, welcome to this accurate and reliable board! You will find a lot of friends here.
The word Graves’, of course, refers to a guy’s name. Not that it is a "grave" disease! But I am sure you know that now.

How wonderful that you have the teleconferencing! How wonderful that you got a prompt and accurate diagnosis! Tha is super! You really need to be on these meds, and you do need to keep in close contact with your docs about how you are feeling. The doses may need to be adjusted one way or the other.
As you probably know, this is an autoimmune disorder. It needs to be properly managed and treated, then you will be fine.
YOu have too much thyroxin circulating, for the message system between the complex system between the pituitary gland and the thyroid gland is not working properly. (Just like my computer, cell phone and flat tire, which all happened TODAY!) And all of them are "fixed," just like you will be back to normal. But it takes a while.

The tapazole tells your body to circulate less hormone, and the propanolol manages your fast heart rate which is not good for us to have a heart working overtime! REally, it will all be good.

I am not sure of your references, but I suggest you talk with your docs and pharmacists again, for I think your perception of drug interactions may be mistaken. Actually, there are few drugs that are contraindicated with either of these drugs, and basically not with propanolol. I don’t think you need to be worried at all about taking an Advil. But do consult with your pharmacist. They are actually better to answer these questions. If there is a drug you want to take, simply call the pharmacist and ask if it ok. Do not look online. Call a pharmacist.
And when another drug IS listed as an interaction, there is still more information that you need. It may be significant, it may not be significant. And from what you have said, you aren’t taking many if any prescribed meds right now.

Just for information, I suggest that you have your labs emailed or faxed to you, or get them from your local doc. Learn to understand them. Reporting how you feel, combined with your labs, will be part of your life for a long time.
And also, just so you know, a thyroid lab panel is usually available to medical/nursing personnel in about 6-8 hours, it does not take five days.

There is lots to learn from us, and then you can help others. Do write again!!!!!
Shirley

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in reply to: Osteopenia – Medicate or not? #1062262

You have asked a complex question. It is true that there is a slight increase for the potential of osteopenia and/or osteoporosis (and a slight incidence of atrial fibrillation) of UNTREATED Graves’, (a continuing hyperthyroid state.) So remember, now that you had had RAI, assuming you are on the right dose of Synthroid (or whatever thyroid hormone you are taking,) you are pretty much back in the normal population. But there are many other factors which make a difference.

There is a lot more to the story of osteopenia and osteoporis, too, such as family history, body frame, weight, gender (more women have than men) pre or post-menopausal state, and if a woman is/is not on estrogen replacement.

Bisphosphonates (the class of drugs you are talking about, Boniva being one of them) have been around for about 10+ years. Not very long. If you are interested, I can refer you to a very long and fairly complicated reference from the University of Washington on them. Let me know. There is so much to know, and there are several different forms of the drug to consider. A lot of studies are being done, but it will be years and years before conclusive answers are known.

I have osteopenia and osteoporosis, plus being female, a strong family history, and being post-menopausal. I take Zometa (zoledronic acid) 4mgm IV once a year. I believe the dose has been changed to every two years in the recent past. In addition, I have subclinical hyperthyroidism, so the risk is slightly increased. (This means, no matter how low my thyroid dose, my labs indicate that I am hyperthyroid.)

It sounds untrue that one pill can cause a terrible side effect. I suspect you have heard a combination of stuff, possibly referring to the extremely rare cases of necrosis of the mandible. And that occurred a while ago, in patients who had bone cancer, who were having super high doses of the drug. Since then, it has been found that much lower doses accomplish the same thing. Please check this out with your doctor on this.

You are right about exercise. The more we walk, the more bone strength we gain. With weight, if our weight bearing bones are weaker anyway, the more weight they have to support, the higher the risk for hip and spine fractures and other fractures.

I’d have a more extensive conversation with your doc, tell him your concerns. There are risk/benefit ratios to weight with lots of drugs. Certainly, all the things you mentioned in your post are things you can do to help your bone health. I try really, really hard to do a lot of walking for this reason.
Sorry if I wrote too much!
Shirley

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