[James]

in reply to: New Member with Questions! #1075099

JoyC wrote:My questions- is this a "remission" so soon, or can I expect it to jump back up again? Can this happen and it still be Graves? Do some people maintain for periods without any meds? Do most people find a level they can maintain on if on meds, or is constant adjustment the norm?
Thanks in advance for any advice, and for having a site where people can find some answers.

I am not a Doctor, but I would venture to say that remission that soon IS unusual, but not impossible. YES people can go through prolong periods of time without any meds, sometimes months and sometimes many years (like I have experienced). Constant Adjustment of ATD dosage is typically required initially. Many endo’s will prescribed a larger dosage initially, to arrest the production of thyroid hormone, thereafter amounts are reduced until a minimal maintenance dosage is found to maintain that euthyroid state (normal level for you). For me, once regulated, I stayed on that same dosage for about 18-24 months (5mg/day). Eventually 15mg/WEEK (almost at placebo levels). This of course will vary from person to person, and there may of course be some bumps along the way. With your Doctor, you will determine the most appropriate dosage for you going forward. If by chance it is determined that you ARE in remission, I would concentrate on looking closely at the events that led up to your diagnosis. Sometimes a stressful event (hard to avoid sometimes), in other cases a supplement that you may have been using MAY have been a potential trigger. We obviously all of a genetic propensity to this disease, but it doesn’t hurt to look at all potential environmental triggers, just as a safeguard to rule everything out and to avoid potential relapse. No guarantees, but it is definitely well worth the try.

Keep us posted as to how you are doing.

James

[James]

in reply to: 23 and just diagnosed with Graves Disease #1075173

Hopeful23 wrote:So Does anyone actually have an exact week they really started to know a difference from being on ptu.

The answer to your question is that it can vary significantly from person to person and for a variety of different reasons. To extend the analogy of, “weathering the storm” a little further. Compare your body to a house. If your house is built solidly, you can weather the storm much better than a house that is built on a poor foundation with structural damage prior to the onslaught of the storm. Sometimes age is a factor, pre-existing medical conditions may be another factor and the length of time your “house” has been subjected to the storm is yet another possible factor. I personally was diagnosed fairly quickly, so the disease simply did not have a lot of time to do a lot of damage (call it a category 4 that passed quickly). I was young at the time and in top physical condition (besides the GD diagnosis that is) ” title=”Wink” />. So while some may have testimonials that seem quite dire, rest assured, it isn’t always so bad in every case. I can understand that when one is first diagnosed, there are so many concerns and sometimes our fears of the unknown overwhelm us. You are doing well by asking questions and consulting with your Dr.

Wishing you well!

James

[James]

in reply to: New to Graves and struggling with life… #1075389

Tammy,

Not sure if you have been on Methimazole already and have been prescribed 10mg because your levels are coming down after an initial run on a higher dosage of Methimazole. I can’t say I understand how a doctor determines the dosage from the uptake scan. 10mg is fairly moderate though. . . so that is a good thing.

Nevertheless, I was initially placed on a higher dosage of 30mg of Methimazole to get my levels down fast. It may be that MY uptake dictated that dosage as determine by my Doctor. The good news was that I felt MUCH better within about 6 weeks, and even better yet the following two weeks. You will be amazed how much better you feel once your thyroid levels come back to normal. I was better able to handle stress and that sense of well being came back soon thereafter, not to mention much better concentration levels. Just ensure that your Doctor watches that you don’t OVER suppress the thyroid either. Regular blood tests are a must during this stage.

I was placed on beta-blockers BEFORE I went on Methimazole, and slowly weaned off of them once my thyroid levels started normalizing. I can’t say that I saw a whole lot of improvement with the Beta blockers. The real improvement came when the thyroid levels normalized. Insomnia was a big problem with me while hyper. I was barely 30 at of diagnosis and in peak physical conditioning, so if you are in a similar position, that should work in your favor. Living and eating well is a must, especially now! I’ve read testimonials here of how some people experienced muscle damage while hyper and could barely lift so much as a book. This was not my experience (Fortunately). Our experiences with GD are clearly quite personal, it’s not a one size fits all kind of thing and that is what your attending physician must understand as well. You are the one with the disease and you are your best advocate. Seems like you are doing a good job!

Keep us posted on how you are doing.

Best regards,

James

[James]

in reply to: GD treatments / to seekingclarity #1075282

ohiolady wrote: I do have one question about the bones – I am 5’7" – 120" (and losing) soaking wet and very small build any I wonder about osteoporosis all the time. Is there contridications on using ATD if osteoporosis is present? I don’t know I have it but I do know I have the right physical attributes for it.

I also want to say thanks for all who have responded to my posts – it is comforting to discuss this with others blessed with GD. Tammy

Tammy,

Good advise to check with your Dr. concerning Bone density issues. My understanding is that it is in being “hyper” that we loose bone density, and ATD’s in of themselves don’t have much to do with that (but do ask you Dr. to be sure). I had two bone density scans in my Graves’ history. One in 1995ish while still on ATD’s and another one around the early 2000’s. Both times in the median (average) range for my age group and gender. A bone density scan is one thing that your Dr. will prescribe for time to time (or should prescribe). You don’t want to be hyper for sure . . and you certainly don’t want to be hypO either as that brings on a whole different set of problems. You will need to determine what is normal for you as far as thyroid levels are concerned, especially since the normal range is fairly broad in scope, and does vary somewhat from person to person.

Take care,

James

[James]

in reply to: GD treatments / to seekingclarity #1075278

ohiolady wrote:Ok so if 30 – 40% chance of remission why do so many choose RAI for first treatment instead of ATD

ohiolady,

I just want to add to Ski’s thoughtful post.

In doing my own research, I have found remission statistics to be so varied. Even within the medical community, one Doctor may tell you one thing and another Dr. something else. Ski’s overall average of 30-40% may not be that far off the mark, however there are SO many variables that could come into play. Variables MAY include; how long ATD therapy is administered, how severe the case is, and even the notion that removing environmental triggers may have some impact on remission . . . and the variables don’t stop there. Statistics about achieving a subsequent (2nd) remission are equally as varied. Some say you are LESS likely to achieve a 2nd remission, others say the opposite is true, depending again on various factors. I personally never got hung up on remission statistics, but just did what I thought was right for me, just as Ski so intelligently suggested, do what “YOU are comfortable with”

In my case, I was given ATD’s for about 2 months and felt so MUCH better, and YES my endocrinologist recommended RAI after my uptake Scan, but because I felt so much better and didn’t have any serious side effects; AND I was able to reduce my ATD dosage, I decided to stay the course with ATD’s. His inclination was to administer RAI, my inclination was not to, for these and a variety of other personal reasons. In the end he supported me in that decision and we worked together to make sure I was properly regulated. I saw his role as assisting me in achieving and maintaining optimal thyroid levels (which he did). Beyond that, I did a TON of my own independent research to learn as much as I could about the disease, pro-cons to various treatments etc etc. At that point in time I did not rule out RAI as an option at some future point in time if required. It was "wait and see" and; "one day at a time", and lets see how healthy I am through the ATD process.

There is no perfect answer other than, do what you are comfortable with doing. Using of course any one of the three approved treatment options available to you.

Best regards,

James

[James]

in reply to: Is It Really Graves #1075312

Steve M wrote:Thanks for your comments and good wishes.

This thyroid business is a real pain in the butt as well as everywhere else!

On a serious note however could anyone tell me if a bad cold or the flu can trigger a graves attack?

I was feeling relatively ok up to a few weeks ago and then I was hit with a bad cough and a cold which went on for about a month in total, it also coinsided with my doctor dropping my carbimazole dosage.

Any thoughts or experiences regarding this will be much appreciated.

All the best.

Steve,

You asked for personal experiences concerning coming off of a cold or flu and the possibility of relapsing.

YES, this did happen to me a number of years ago. It was the type of cold that seemed to last forever and then all of a sudden just cleared up, almost like overnight. With the ramp up of the immune system, I ended up relapsing . . felt my throat tighten and hyper symptoms came on quite suddenly. I started another regiment of Methimazole for about 3 or 4 months. Good news is that I could wean off of the ATD fairly quickly after that. One other word of warning. Try to avoid supplements that boast immune boosting properties. I think that was what did me in the first time. Chicken soup (low sodium with non-iodized salt), lots of fluids and rest . . . the good old fashioned way to treat a cold is the best I have found. Interestingly enough, I never had a problem taking vitamin C.

The immune system is a very complex system and difficult for even the most highly trained professionals to understand. You can become very much in tune with your body just from experience; and get to know what your potential triggers can be and how to avoid them, although realistically certain things are next to impossible to avoid. What we put into our bodies (in large part) is something that we CAN control, and I have personally found this has had a lot to do with my overall immune system health.

Best regards,

James

[James]

in reply to: Acai berry #1075304

Hellie,

Interesting! I recently had a multilevel marketing person approach me about an Acai berry based drink. My response was, been there done that (referring to supplements the promise the world, but were actually detrimental to my situation). I believe the Acai berry is know for it’s antioxidant properties. I didn’t know it was marketed to assist in weight loss. If it sounds too good to be true, it probably is! (I know I know. . old adage).

If you were hyperthyroid and still have a functioning thyroid because of ATD therapy, you have to be especially wary of any product that makes these claims. It isn’t always the berry in itself that is the problem, but the other preservatives, and substances that they add to the drink (assuming it is a drink). Substances that could potentially trigger a Graves’ relapse. There was a product that promised the world that I was taking that may have triggered my GD in the first place (that was 15 years ago). Again, based on my personal experience, my advice would be to eat whole foods; its cheaper, better for you and you know exactly what you are putting into your body. Good choices If your aim is to keep GD at bay.

Take care!

James

[James]

in reply to: I need some help making up my mind. #1075415

Mike,

OK, since you are asking, and since you are a fellow male with Graves Disease, I will give you the perspective of someone who choose ATD (antithyroid drug) as a medically acceptable treatment option. By the way, I am a 44 year old male, diagnosed around the time I turned 30.

With ATD’s, your Dr. will start you off on a higher initial dosage in order to get your thyroid levels regulated as quickly as possible. Once you are in a euthyroid state (normal thyroid levels), your doctor will help you determine how much to cut back on the medication (ATD) in order to maintain your personal optimum thyroid level (normal ranges are wide and differ from person to person). As far as ATD side effects are concerned, I found that while on the higher dosages (which are required initially), some side effects can show up during this time. Most of the side effects are minor in nature and in rare cases are more significant (effecting white blood cell count) which can potentially be a life threatening condition. (that’s the disclaimer to those who are concerned)

While starting on 30mg of Methimazole/day, I had a minor rash which immediately subsided in a few days. When my dosage was reduced, it went away completely. I personally never had any major OR minor side effects during the time I was euthyroid on ATD’s, nor were my white blood cells compromised at any time (a rare but possible condition). My Graves medical file states, “Graves Disease – Grossly overactive thyroid”, not considered a minor case by any means. Anyway, with each subsequent blood test I could eventually wean off to a minimal maintenance dose of ATD to achieve and maintain my euthyroid state without any problem at all. I could go on and on, but this gives you a brief overview of my personal experience which was a medically supervised treatment choice. I will also add that although anecdotal in nature, I am convinced that some lifestyles changes helped me ultimately achieve remission and stay there. I have been off of ATD’s for a number of years now and blood tests confirm euthryoid (remission) state. It didn’t happen overnight though, and takes time and determination along with your physician there to back you up in this decision. Would I go back on ATD’s if I slipped out of remission. You bet!

Good to see that you are looking into ALL of your options thoroughly.

Take care of yourself and keep us posted.

James

[James]

in reply to: Just Had RAI done Thursday and Friday #1075472

Wayne,

I too want to express my empathy as to what you had to endure through this process.

Even with the lower RAI dosage used specifically for diagnostic purposes (uptake scan), I was thoroughly briefed on the procedure as to what I could and could not do with the radioactive material. I had to sip the fluid through a straw, and the practitioner was VERY concerned about any spillage; spitting up and even how the sipping straw was disposed of. So as unfortunate as your experience was, it doesn’t surprise me.

Just wanted to add one more point of advice concerning air travel. If you are traveling by air in the next short while, please advise the security staff as to the procedure that you had and have a Doctors note in hand. There is very sensitive equipment at airports that monitors Radioactive material. It is extremely important in this age of heightened airport security, to ensure that you disclose this upfront. If by chance you set off the alarm, they are briefed and you won’t have to endure another not so pleasant experience. If you have any additional concerns regarding RAI and the do’s and don’ts, you should never hesitate to consult with your doctor as well.

Hope you are doing much better today!

Best regards,

James

[James]

in reply to: Remission? #1075621

JaneQ

It’s interesting that you haven’t found any postings of “Remission” after taking Tapazole. That topic had come up a number of times over the years from individuals who for whatever valid personal reason, choose to stick with ATD therapy in conjunction with their Doctors supervision of course. As Ohio mom has stated, there are a number of people who are “hoping for long term remission”. There are a number of us who over the years have enjoyed a sustained (long term) remissions (I am such a person). Did it come overnight? NO. Were there some bumps along the way . . YES. Does it require discipline . . Yes again. Achieving remission is a combination of a lot of those things and in is often driven by a lot of self determination. Can we go WITHOUT one of the three approved treatment modalities . . . Definitely NOT.

As for the part about 10% of patients where “Graves kills their thyroid’. The way it was explained to me is that it doesn’t happen overnight. On a micro scale, over time, the thyroid can slow down as a result of the onslaught on the thyroid gland by the suspect Graves antibodies. The aging process alone often times is enough to “kill” or cause the Thyroid to “peter out” (for lack of a better term). One of my aging parents for example is now on thyroid supplement as a result of aging NOT Graves.

Lots to learn for sure. Between your Doctor; blood test results and your personal experiences, you will develop the ability to know when things are running amok, and you will be in a better position to understand what is going on in your body, and what you have to do about it.

Take care,

James

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