[James]

in reply to: PTU and Liver failure #1065628

Clearly there are various points of view on the three medically acceptable treatment options. Even amongst the facilitators on this board, we have all had varying experiences with the options we have chosen for ourselves. For some reason, some of us have problems with the antithyroid medication, but have given it a reasonable attempt. Fortunately it is not the majority of people on antithyroid medication that end up with serious problems; but if you are one of those people that have given it an honest attempt, it can be disappointing. I believe the thyroid is worth salvaging if at all possible for the same reasons that Kim pointed out. I choose antithyroid medication as my option against all the odds presented to me at the time (over 16 years ago now). Remission doesn’t necessarily come quickly or permanently, but the potential is definitely there. I’m fortunate enough to have experienced a very positive outcome, but it wasn’t something that happened quickly. Fortunately, the road for me on ATD’s was not a difficult one at all. You don’t know for sure until you have attempted a journey down that road.

James

[James]

in reply to: About to go off meds #1066035

Being stable for a period of time deserves celebration. Being in a position where meds worked effectively for you and being healthy through the process is also worth celebrating. Take time to embrace and celebrate your health achievements along your journey. Take one day at a time and appreciate your good health, not worrying so much about what might or could happen as we have no control over that. I was in your position more than once over the past 16 years. I was able to respond well to meds each time and being able to stabilize quickly, but I didn’t know that would be the case at the time. I found that extra anxiety brought on by worry often mimicked some of the Graves’ symptoms; so as you have pointed out, try to stay at peace and ensure that you are monitored by your Dr. closely during the periods you are off of your meds. Above all, make sure (with your Dr.’s help) that you are in a position to come off of the meds in the first place. My experience was that coming off too soon yielded less than desirable results.

Wishing you the best!

James

[James]

in reply to: New to Graves disease and Methimazole and confused! #1066098

On the subject of splitting Methimazole dosages throughout the day versus taking it all at once.

My experience with my endo was it was better to split the doses of Methimazole throughout the day. While it may be true that the biological life of the drug is such that you can take it all in one dose, we have had people mention stomach upset and nausea from time to time which is one of the minor side effects of this particular ATD, particularly if you are on a moderately high dose initially (30mg/day is considered moderate). Of course if is more important that you take your meds even if it is all at once, rather than missing a dose throughout the day.

If you are able to get down to a lower dose and maintain at 5mg/day or less eventually, it would become almost impractical to split those doses. If this is of concern to you, your Pharmacist may be a good resource to turn to in this matter.

Take care,

James

[James]

in reply to: Eye Floaters #1066303

Hi Kylar,

Graves’ disease is probably the most common cause of Hyperthyroidism, but until your Dr. confirms this with either a thyroid scan or definitive blood test that indicates that there is an excess of Graves’ disease antibodies present, you won’t know for sure. Make sure you follow up with you Dr. for the definitive results and keep us posted on your progress. Eye floaters are common in the general population, I personally have never heard of them being directly linked to Graves’ or hyperthyroidism.

Regards,

James

[James]

in reply to: Not going to do radiation or surgery…am I a minority? #1066572

Hi Sue,

It is certainly not out of the realm of possibility of having a high TSI (common in Graves’) and also a high TPO which is an indicator of Hashimoto’s. Your Dr. will be able to help you determine if any swings from hyper to hypo are a result of both of these antibodies at play. What I do know is that if the TPO antibodies stay elevated, you are more likely to become permanently HYPOthyroid in time due to the destructive nature of these antibodies. The antibodies can rise and fall and apparently it isn’t clearly understood as to why this happens. Ask your Dr. if it would be worth testing your TPO levels again (since it has been 18 months). Updated results may shed some light on what you are presently experiencing. I can certainly sympathize with the frustration some of you experience on the Graves’ roller-coaster. Wishing you well!

James

[James]

in reply to: Surgery Complete! #1066273

Hello Chris and welcome!

Keep us posted on your progress throughout your treatment, and if you have questions along the way, feel free to post them.

Wishing you the best going forward!

James

[James]

in reply to: Hyper to Hypo #1066258

Hi Kavya,

There may be a number of different reasons that your husband went form Hyper to Hypo. From time to time we hear of patients reporting exactly what your husband has experienced. At the recent Graves’ conference the topic of thyroid burn out came up. I did not receive and definitive answer as to how often this happens and why some people can go for decades and remain and maintain on small doses of antithyroid meds while others become Hypo over time.

You say that you don’t think he has Hashimoto’s or Graves’. There are blood tests available to give him and his Dr. the definitive answer that your husband deserves. TPO antibodies are very destructive to the thyroid gland and those individuals with elevated TPO antibodies can expect to go hypothyroid over time. I have a male relative with Hashimoto’s (elevated TPO) and he has had to adjust his thyroid replacement upward over time as a result. It would be great if your husband asked his Dr. if he has had this testing done. The results may yield some more answers. Not that it would change the current treatment he is receiving, but it may give you some indication of what is to come. As far as the emotional instability is concerned, it is not that uncommon with thyroid imbalance in general. I will let some of the other experienced people who have experience hypo weigh in more specifically on that point.

I can venture some guesses as to why his Dr. would not recommend Surgery or RAI at this point. Generally speaking RAI or Surgery is to get you to Hypo and work your thyroid levels upward from there. He already is Hypo. If your husband starts bouncing back and forth from hypo to hyper, his Dr. may have some different recommendations.

Encourage your husband to sign on here, there are a number of experienced people that have been down a variety of different roads concerning thyroid issues.

Wishing you both well,

James

[James]

in reply to: Things that inhibit t4 to t3 converstion #1066380

The topic of diet, supplements and health does come up from time to time and have to say from my personal experience that sometimes changes to lifestyle/diet can make a marked difference. My view isn’t so much that some of the things on a “Graves Diet” list are or are not effective, but in combination and used as an adjunct and not a replacement to existing therapy can make a difference, as long as the changes are safe. Like Bobbi says, there isn’t a specific food we can latch on to in order to say that we can absolutely control hypo/hyperthyroidism. However, by incorporating a few lifestyle/diet changes as an adjunct to existing therapy is probably what you are saying if I’m reading correctly between the lines Kristen?

Many people who I have spoken to over the years who wish to try ATD’s for the long haul if required, quite often try to latch on to a quick fix Graves’ diet. There isn’t one. As an example, your list includes a number of chemicals that have been debated in the medical community as interfering with proper immune function (never mind T4 to T3 conversion). Mercury in dental fillings is a controversial one. Is removing the mercury from your teeth going to cure ones autoimmune disorder? Definitely not. But if a patient by his or her own choosing decides to implement a number of changes that are medically safe, there is no harm in doing so. A few things that might help us on a micro scale can potentially add up to big difference in overall health long term. I applaud individuals such as yourself who take their health seriously enough to want to explore and discover by looking outside of the box. That is if looking outside of the box incorporates the use of medically acceptable treatments as well.

James

[James]

in reply to: Not going to do radiation or surgery…am I a minority? #1066562

At the recent Graves’ disease conference the question of thyroid burn out came with the panel of physicians present. I found it interesting that the answer seemed to vary concerning the prevalence of “thyroid burnout” over time. One of the Dr.’s said that 5% of patients will go hypothyroid over time, so this would imply that it isn’t that common for thyroid burnout, however, they didn’t discuss any variables like degree of hyperactivity and over how much time etc etc., I’m not sure if that is well known. What I do know from my own physician is that TPO antibodies (Thyroid Peroxidase), at high levels which is most prevalent in patients with Hashimotos disease, can also be present in those of us with Graves. My understanding is that if those particular antibodies are high, they are very destructive and will in time destroy the thyroid tissue prematurely rendering us permanently HYPOthyroid. During periods of sustained remission where TPO antibodies are at bay, the destruction is also at bay, individuals can potentially go many years or decades with a normally functioning thyroid, depending on these antibody levels.

I would be curious to know if your physician has ever tested your TPO antibody count? Not that that would change your treatment, but would potentially give you and your Dr. better insight as to what is at play. I have a relative with a high TPO count. He is hypothyroid and probably will continue to become more hypothyroid over time because of the elevated TPO antibodies.

James

[James]

in reply to: Not going to do radiation or surgery…am I a minority? #1066547

Audrey,

You are most fortunate to have a Dr. that will support your decision and work with you. Having a full mutual respect as you do with your Dr. is so key in your overall well being and health care.

It is not fully understood as to why the suspect antibodies may come and go as you seem to have been experiencing. I share your mindset in that I was prepared to use antithyroid medication indefinitely with the goal of a sustained remission, but not necessarily expecting that I would ever get there for certain. I think it is important to have reasonable expectations before embarking on any treatment option. I have spoken with many people over the years who have tried ATD therapy and the results vary significantly. Some individuals may be very sensitive to even minor changes in thyroid hormone, while other may not. In cases where both Graves’ disease and Hashimoto’s antibodies are present , some patients swing from hypo to hyper on a regular basis and become frustrated with this see-saw affect. On the plus side, others do quite well managing on a consistent maintenance dosage of ATD’s for many many years.

In my opinion, the healthiest approach is to have reasonable expectations and take one day at a time and see where it goes. You indeed may be one of the fortunate ones who is able to achieve remission and stay there. The key thing is that you are using a medically acceptable treatment option and that you have a Dr. that is fully backing you.

Keep us apprised of your progress.

James

[James]

in reply to: Question about TSH #1066606

I was just back from the Dr. recently and had him comment on my recent labs (TSH). The reference range and units of measurement can vary depending on your geographical region. Here in Canada (.2-6.00) mU/L is the standard. Regardless, it is a fairly wide reference range. My experience with Dr’s. is that as long as you are in the reference range, they typically don’t fuss too much. With that being said, some patients seem to be very sensitive to even minor changes in hormone, and other patients less so. For many years I insisted on testing FT4, FT3 and TSH. Together they can assist you and your Dr. in determining what is happening with your Thyroid and where you should be. The TSH as I understand it is typically an average over time. Whereas your FT3 has the most significant impact on your metabolic rate which greatly impacts how you are feeling.

Depending where you are at in your treatment, your Dr. and you will have to decide which labs are the most important to provide you with pertinent information.

In my stage of treatment, I have been stable (in remission) for the last 6 years, so I only test TSH at this point in time, but ONLY because my levels have been stable for a sustained period of time. My normal TSH (running average) is in the bottom 1/3 of the reference range. My FT3’s are usually in the top 1/3 of the reference range. So if there is a “sweet spot”, that is where it is for me. You and your Dr. need to study all of your labs over time to determine that sweet spot that is appropriate to you. Best thing to do is keep records of all of your lab reports and make notes or keep a journal.

Take care!

James

[James]

in reply to: Kimberly is our newest BB Facilitator #1066642

Kimberly,

It was great meeting you at the October conference and talking to you in person! It’s great to have you onboard as a Facilitator. I’ve always appreciated your well thought out; supportive and informative writing style in your posts. I look forward to seeing more of the same in your now "official" capacity.

Welcome!

James

[James]

in reply to: Oh Happy Day #1066816

Thanks for taking the time to post your encouraging news. I agree with Ski . . . be good to yourself and continue to take care of yourself to the best of your ability. Eat healthy and try to avoid stress (I realize this is easier said than done). If you do have a set back, be encouraged that some of us have had setbacks along the way and then have gone on to have sustained remissions thereafter. Be patient and continue to take one day at a time celebrating any positive steps going forward. If you can go for a year and are able to stay in remission, celebrate it with your family as it is something worth celebrating. Being positive and celebrating good health is always helpful. The mind is a powerful tool.

Best regards,

James

[James]

in reply to: Glen W. Bell passes #1066800

Peter,

Thank you for bringing this to our attention. Our sincerest condolences to the Bell family. They will be in our thoughts and prayers during this very difficult time.

James

[James]

in reply to: Hyerthyroid to hypothyroid #1067096

Hi Kavya,

At the last Graves disease conference in October one of the physicians mentioned that about 4-5% of Graves patients could go hypo in time for no apparent reason. We do know that some Graves’ patients swing from hyper to hypo due to TPO antibodies at play. TPO antibodies are most often seen in patients with Hashimoto’s disease (Hypothyroidism). It is possible to have both antibodies (TSI & TPO) in which case thyroid regulation becomes more of a challenge for some people. Work with your Dr. to pinpoint exactly what is at play. There are various blood tests that your Dr. can order to help pinpoint the problem and give you some direction going forward. If your Dr. is only ordering TSH testing, ask him if it is worthwhile to check the FT3, FT4 and TPO as well. Keeping a copy of all lab reports is something that I have found helpful as well.

Take care,

James

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