[James]

in reply to: Exercise? #1069100

I believe there are a variety of views on the subject of exercise and GD. I think most Dr’s will lean on the side of caution which isn’t a bad thing. However, I would have gone out of my mind sitting and doing nothing either, granted I was in top physical conditioning and used to working out a lot and was about 15 years younger at that time. I think our bodies will tell us to stop or slow down with any illness. If we push ourselves beyond our comfort level, and elevate our heart rates beyond what we would normally do in exercise, that wouldn’t be a good thing. Some people who have not been diagnosed early, or who may have a per-existing condition may have lost some muscle mass and not be capable of doing much more than a light walk. People who are used to exercising, who are young and diagnosed early and treated right away usually don’t have that much of a problem rebounding. It’s not a one size fits all answer as far as I’m concerned. You can mention the variables to your Dr. in your specific Graves case and he can help you assess what you are capable of doing. If you are not on any ATD or beta-blocker and are awaiting RAI, there probably is good reason as to why the nurse practioner is being cautious. In my case I was told not to go beyond what I would normally do. In other words, I was not train for a marathon (or equivalent) during that period of time, BUT I was on being effectively treated with ATD medication at the time.

Take good care of yourself!

James

[James]

in reply to: Newly diagnosed & have questions please #1069144

There is no right or wrong answer that can be given to you concerning RAI or any of the other of the valid treatment options that are available to us. Dr.’s as well patients have their own opinions and often times biases even come into play when an opinion is given. The most important thing right now is that you ARE being treated, and since your next appointment is still about a month away, it was probably wise of your Dr. to place you on an ATD (antithyroid medication). Since you are so newly diagnosed, it is hard to know how you will be feeling about a month from now and even beyond that. Best thing to do is to take one day at a time. The ATD option, will at least provide you with time to in making a decision. My experience (as a very physically active person myself) was that I felt 85% better within about 6-8 weeks and 90-100% better at about 10-12 weeks (everyone is different though). I began with 30mg/day to get my levels down quickly and weaned down from there. I believe that a large part of the problem with the people not doing well with ATD therapy is that their levels aren’t being managed properly. Frequent blood tests are important right now during the initial phases and until you get stable. It is important that Free T3 & Free T4 tests are taken, not just TSH. Also, ATD medication at low maintenance doses can be a long term option as well (been there and done that). Your Dr. of course should be a good source of information concerning some of those questions as well as ways to safeguard yourself.

Keep us posted on how you are progressing.

Best regards,

James

[James]

in reply to: Very weird dreams since ive been on synthroid. #1069330

I believe that Nancy is correct in her assessment. The vivid dreams are part of fluctuating hormones and really don’t have much to do with synthroid or antithyroid medication directly.

My personal experiences was that I too had incredibly vivid dreams, usually when my thyroid levels were on the way up, not on the way down. This while adjusting my doses of antithyroid medication. Once my thyroid levels stabilized, the frequency of the vivid dreams diminished as well.

James

[James]

in reply to: Gardasil Vaccine and Graves Disease #1069559

Hello Carla,

Sorry to hear what you have been going through with your daughter. It’s difficult as parents to make choices for our kids when you only have their best interest at heart. As a parent myself I can understand that.

The topic of Vaccines in general and the role it plays concerning our immune system is of interest to me. Often times I have had to weigh the advantages over the disadvantages of a particular vaccine before making a decision, and even then; you often find conflicting evidence. In the end the parent is often left confused and unsure. You are not alone in that.

If you google search National Vaccine Information you will find a search engine to research any vaccine of interest. As previously mentioned in this thread, the CDC (center for disease control) gives great information on vaccines as well. Some vaccines do indeed have side effects, but they are extremely rare (that has to be taken into consideration). At the same time, those of us with pre-existing autoimmune disease especially have to weigh the benefits over any potential risks. I’m not speaking about Gardasil in particular, but just vaccines in general.

Like Jake said, try not to beat yourself up, just get as much information as you can in to treat assist your daughter in her treatment.

Best to you and your daughter,

James

[James]

in reply to: having a virus and GD? #1069904

There is no question that as our immune system ramps up to fight an infection, there is the possibility that we can relapse or get worse. This was always of particular concern to me especially while in remission. If you are already being treated on ATD’s this will be less of a concern and may just mean and adjustment to your dosage if required as prescribed by your Dr.

I had a Graves relapse only on one occasion years ago resulting from a long drawn out virus. I’ve had numerous viruses over the years since with no problems at all. In fact in just the last couple of months appendicitis sent my white blood cells skyrocketing. Still with no problems and normal Thyroid test results. So if you are being treated with ATD’s and you get a viral infection, that last thing you should do is become overwhelmed with worry and anxiety. Take the best care of yourself that you can and let your Dr. take care of the rest. Anxiety and stress in of themselves wreak havoc on our immune systems.

Take care everyone!

James

[James]

in reply to: having a virus and GD? #1069900

Some over the counter cold/flu medicines can have an effect on blood pressure and heart rate. The cold/flu in of itself can bring on respiratory issues. If you are having trouble breathing or have body aches associated with the virus, your pulse could increase as a result of your body fighting for more oxygen. People in pain or discomfort generally will have an elevated heart rate. You have to remember that your body is fighting hard to kill the virus. I have experienced GD like symptoms while fighting a virus that had nothing to do with GD on more than one occasion. It is good that you are conscious about these things and ensure that everything is in check with your Dr., but don’t allow yourself to get to the point where you end up worrying needlessly over it though. I realize that this is easier said than done. I don’t know how many times I’ve said to myself, “is it back”. When in fact I might have had a stressful day or drank too much coffee etc etc. As long as you are onside with your Dr. and getting your blood work done regularly; you are doing everything you can to stay on top of things.

[James]

in reply to: The Verge of Remission:) #1069984

Your posts are encouraging! Glad to see that the meds are doing the job intended and that your levels are normalizing with the reduction of ATD. These are all positive signs.

Make sure you ask your Dr. if a TSI test is warranted prior to him taking you off of the ATD’s. If any of those rogue antibodies are still present, coming off of ATD’s too quickly could lead to a relapse, especially for someone with a fairly new diagnoses. Ask him about weaning slowly, even if it means breaking the pill in half or alternating dosages each day. I tried the cold turkey approach myself after about 18 months on ATD after being on 5mg/day Methimazole for a good number of months. I ended up relapsing within about 3 months the first time. I wish I would have had my Dr. monitor my antibody levels prior to coming off of ATD’s. Even if the antibodies are just slightly elevated, smaller doses of ATD may be order for a longer period of time (ask your Dr. about this). I’ve often wondered about the auto immunomodulatory aspect of ATD’s as well, there is still great debate about the benefits (if any). This would be a good question for the experts at the conference this Fall.

Keep up being positive and take care of yourself. Good to see you are doing so well.

James

[James]

in reply to: Low TSH, High T3, T4 = GD? #1070360

I would ask my Dr. to assess (from the test results), the severity of the diagnosis. For example, when I became extremely hyper, my TSH level wasn’t just low, it was undetectable low (below 0 on the scale). Yet, while in remission my TSH level still remains in the lower quadrant of the range (this is normal for me). The TSI test wasn’t routinely requisitioned for back in the day when I was initially diagnosed, yet I feel it provides valuable information. It is good that you are having this test done. The thyroid uptake scan was and still is routinely used and will help your physician determine the amount of RAI required for Thyroid ablation should you decide on that option. It could also be a guideline to help determine how much ATD (antithyroid drug) you will need to take initially.

You are correct in saying that PTU/Methimazole is less permanent. Your other options are always still open to you at any time should you change your mind. I will add that it was more common in years past for a physician to administer lower doses of RAI in order to attempt a state of thyroid equilibrium. Some of the Facilitators here can comment on their experiences of the “lower dose” RAI treatment. I think the trend with most physicians is to move to a higher dose or RAI to fully ablate the thyroid the first time, rather than dealing with constant fluctuations to thyroid levels as the thyroid gradually dies off.

It’s good to see that you are actively involved in your treatment and looking for information. I am always encouraged when I see new the newly diagnosed taking an active interest in their health care.

Best to you,

James

[James]

in reply to: Decided against RAI and doing Tapazole…I need diet help #1070357

I too, very much watch my iodine intake. For me its not so much what I can eat, but more so I look at it as things that I should probably try to avoid.

Without going into too many details, I found that searching out legitimate Thyroid Cancer Survivor Associations, there are excellent guidelines there for low iodine diets that you may find very helpful. You have to keep in mind though, (if you run the full gamut of living as iodine free as possible), that you potentially give up some important vitamins and minerals. For example, Iodine is often found in dairy products and at the same time calcium which is especially important for you right now IS a requirement. With many dietary changes there are tradeoffs. If you decide to go so far as to give up dairy products, you would probably want to consult with a qualified dietician to ensure that you are getting sufficient calcium through other sources or supplements.

Iodine is found in so many foods and food additives (reading labels is important). Many dyes used in processed foods also contain iodine. I found that switching over to whole foods as much as possible diminishes the possibility of consuming unwanted iodine. I certainly can relate to your desire to get well and stay in remission. Positive dietary changes generally may not necessary make you well overnight, but may prevent you from getting a lot worse. These are all positive steps in your overall wellbeing.

Best to you,

James

[James]

in reply to: Endo says NO to RAI???Confused? #1070831

I certainly understand your frustration. Once you have confidently settled on a certain treatment option, and you feel you are informed enough and confident enough that that choice is right for you, yet you feel you are being steered away from a decision you are most comfortable with, by a Dr. you trust. This scenario often happens for those of us not wanting to pursue RAI, but rather being encouraged by the Dr. we trust, to pursue Thyroid ablation. The choice is ultimately yours . . . that is the bottom line.

As for your other comment about not achieving remission so far on a low dose of ATD. I’m curious to know as to how long it has been since your initial diagnosis, and how long have you been on PTU? It can take years on ATD before achieving a remission; and sometimes it may never happen. Sometimes a remission happens sporadically, but the Graves’ symptoms return later. Sometimes people can maintain low doses of ATD for decades without any problems at all. Sometimes people go years on ATD and suddenly attain a long term remission for no known reason. All of these scenarios are possible. It depends on how much resolve that you have to accept what might happen; what could happen, and pretty much the bottom line is how determined you are to keep your thyroid. In your case, it sounds as if you are resolved to RAI, and so when you return to that endo, make sure you ask the many “why’s” you have brought up here. As a patient you certainly deserve your questions answered to your satisfaction. It sometimes takes a second visit to get your questions in order and ask those important questions.

Glad to see you are taking your health seriously enough to ask questions. I think most Dr.’s respect patients and often go the extra mile for patients who want to be actively involved in their treatment.

All the best,

James

[James]

in reply to: ATD Regulation #1070949

From my experience on ATD’s, finding that sweet spot where you feel your best is often a bit of a trial and error process at the beginning. I personally feel best when my TSH is in the bottom 1/4 of the normal range; my FT4 right in the middle, and my FT3 in the top 1/3 of the normal range. Those are “MY” optimum levels, yours of course can be quite different. The best thing to do is request copies of all of your lab results and take notes as to how much ATD you were on and for how long, also note how you felt physically at those levels. From there you can determine where you want to be and along with your Dr., may tweak your meds according to those lab results. I would imagine that any change in meds would be very gradual right now, especially given that you are seemingly where you want to be. I can’t comment on the best methodology for coming off of B & R therapy. Your Dr. would be your best guide on that one. One thing I will mention though is that coming off of ATD’s cold turkey isn’t a good idea, especially if thyroid antibodies are still lurking and not at bay. A Thyroid antibody test will help you and your Dr. determine the best way to wean off of ATD. If your Dr. suggests the “cold turkey” approach, question him/her as to why he/she feels that way. You deserve sound rationale for any medical decision that you are partaking in.

All the best to you!

James

[James]

in reply to: Being Euthyroid #1071966

DianneW wrote:My brother-in-law had Euthyroid Graves’ Disease. He had a bad case of TED with normal thyroid levels. Eventually though, he became hypothyroid and now is on thyroid replacement hormone.

Hi Dianne,

I would be curious to know if your brother-in-law had his TPO antibodies tested indicating possible Hashimotos? My father was recently diagnosed with Hashimotos and his elevated TPO level confirmed that fact. I suppose that could be a possibility going from Euthyroid to Hypo. Seems that varying Thyroid Autoimmune conditions; whether it be Graves or Hashimotos, are not uncommon within the same family. We now have a confirmed diagnosis of both conditions in our immediate family now. I will be having my TPO antibodies tested in May to see if I too may be at risk.

James

[James]

in reply to: RAI #1072242

Mickey65 wrote:I didn’t take the other two choices, since the surgery would have been too invasive and I saw some pictures of thyroid neck surgery and didn’t want mine to look like that. With the surgery, there’s a chance of your vocal chords or something else being nicked when they cut out the thyroid.

I didn’t want to be on pills for 3-4 years and find out in the end they really didn’t work and end up with possible liver damage. It would have been a waste of time and money – money spent on prescriptions for it all.

Hi Mickey,

Just as a point of clarification. ATD’s DO do their job in virtually all patients (that is blocking thyroid production) there are very rare exceptions where this isn’t the case and equally rare cases where liver damage may occur. As far as wasting time and money is concerned, I’m going to take the liberty by making a subjective statement by saying is time and money well spent; although I thought the drug was very inexpensive. You claim to have done your research fully prior to making your decision, but at the same time you make speculative statements. Admittedly, I myself have done this at times.

As for some people being “negative” as far as RAI is concerned, you would of had to have been around for a while to fully understand that RAI is a highly recommended treatment option here and that the facilitators have an incredible wealth of knowledge and experience with RAI. In the past I thought that ATD’s were not given equal time. Thankfully, I don’t think that is the case any more though.

I agree with you that being fully informed is paramount and probably one of the key goals of this message board. I don’t think that everyone is fully informed, and often end up making choices they are uncomfortable with. I think that we would all agree that that is what we don’t want.

Best regards,

James

[James]

in reply to: nightmares? #1072261

My personal experience was similar. Nightmares and more appropriately extremely vivid dreams and the increased frequency of these dreams were all to common when my thyroid levels became elevated or even slightly elevated (I can’t speak to HYPO-T though). To this day, I use the “dream factor” as a barometer for my thyroid health (among other things of course). Everyone is different and some people may not experience dreams with fluctuating Thyroid levels. This was definitely something very common in my case though. My normal dream activity is such that I DO dream occasionally, but I seldom remember the dream thereafter. While hyper, I remembered every detail in Technicolor and often times they were Nightmares (not always though). Frequency was WAY up too. If you are in the early part of your therapy and still adjusting to find the appropriate Thyroid Hormone level, this wouldn’t surprise me. Of course there are other factors that could influence dream/nightmare activity. Your Dr. may have some further insights as to what those may be.

Wishing you better dreams and a return to good health,

James

[James]

in reply to: Some Random Questions about GD (can’t find answers anywhere) #1072601

omoplata wrote:1- I have read on numerous occasions that ATD treatment works only for some patients with success rates quoted at around 20-30%. I am also reading conflicting statements, however that imply that ATDs will almost certainly reduce thyroid levels in the blood. Can you please shed some light on this concept? When it is quoted that ATDs have a 20% chance of success, does that mean only around 20% of people can manage GD symptoms with only ATDs without experiencing any relapse at all (even though ATDs work in the beginning), or does that mean only 20% of patients experience some relief of symptoms from ATDs, while the remaining 80% or so are completely unresponsive to these drugs and experience no reduction in serum thryoid levels?

Wow! Lots of great questions, I have time to address question #1 right now; and hopefully some of the others will assist you as well.

The 20-30% “success rate”, I believe that you are referring to has to do with those individuals that eventually go off of ATD, and sustain a long term remission (more than one year). Those numbers seems to vary depending on who you talk to and the study involved. These figures often cause confusion for many. Someone I personally know who was recently diagnosed was quoted this “20%” figure and was equally confused; thinking, “why bother if there is only a 20% chance that I will respond to the drug”.

Most everyone WILL respond to ATD therapy (by resonding I mean, reduce thyroid levels in the blood), there may be exceptions, but it is rare. The point is to get you to optimum thyroid levels the are within a “normal” range but are unique or optimum for you as an individual (normal ranges are quite wide). This does NOT mean that 80% of individuals are completely unresponsive to the drug.

There is however a smaller chance of side effects to the drug; from minor skin irritations to far more serious WBC counts. The later being rare, but still within the realm of possibility. Your Dr. can advise you as to these risks and what to watch for concerning side effects. Hopefully that gives you a little more clarity on your point #1.

Best regards,

James

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