[russell]

#1074501

Dianne, Bobbi, Ski,

Thanks to all of you for your super-helpful comments! So much appreciated!

Based on everything you’ve said, I’m probably going to give it one last shot to stabilize TSH at about 1.8-2.5, and if that doesn’t work, I’ll do thyroidectomy. You guys have reassured me greatly about that procedure.

Block and replace sounds practical, but my GP once had the typical MD view that levels should only be checked every 3 months, which unfortunately sent my TSH from 0 to 14, I got heart palpitations, and my hair fell out (not to mention the extreme lethargy!). To top it off, this was all in the months leading to my big 50th birthday bash!

My personal monitoring experience is that once I commence tapazole, TSH starts to increase in less than a week (at an ultra low dose of only 5-10 mg/day!), and a rate of around 0.5-1.5 points per month. And once I terminate, TSH tends to stabilize with a week or two, i.e. no overshoot trajectory. It then slowly begins to sink, sometimes at a rate of only 0.1/month; other times at a rate of 0.9/month. These are big ranges and highly variable — another reason to do close monitoring.

Stabilility requires a lot of blood work not to mention serious follow-up to pry test results from slow MD offices (especially when you’re in the "normal range"). I’ve also learned that waiting 2 weeks for results can mean the difference between hitting your target and overshoot.

Thanks again gang!

Russell

[DianneW]

#1074502

Russell, I can understand your reasons for being leery of having your thyroid levels get out of hand by going too long between tests.

Bobbi, you questioned the use of block and replace therapy for stabilizing levels, so I sent you some references showing that it is indeed used that way. For anyone else who is interested, that information consisted mostly of an article from the European Journal of Endocrinology discussing valid ways to use antithyroid drugs; whether to adjust the dose according to patient response (known as "titration") or whether using block and replace was still a valid way to use ATD therapy. The article concluded that block and replace had been prematurely discarded as a mainstream therapy, based on some faulty thinking (partly because doses high enough to cause significant side effects do not need to be used), and because it has significant advantages: namely that it’s easier to stabilize patients and keep them from becoming hypothyroid, which not only means fewer lab visits, but is important in patients with thyroid eye disease to keep from exacerbating the disease.

Bobbi also said in her post to Russell that "our doctors are the best source of information" regarding treatment choices. In an ideal world this would be true, and I don’t wish to undermine anyone’s therapy when I say that I’m not as idealistic about that as Bobbi is. I’ve encountered way too much lacking in that regard to support that statement 100%. I will say that our doctors are an important source, and certainly should always be consulted in any decisions. If we don’t agree with their philosophy we can get second opinions or change doctors.

There’s another important consideration. Perhaps for some people (maybe for Bobbi?) the medical perspective is the most important piece of advice in making a medical decision. For others it may not be. I want to know what’s going to happen from a human perspective (how the treatment choice will affect my day-to-day life, not simply my safety). For example, my doctor explained the three treatment choices to me and I understood them medically, but I had no idea at all what any of them would do to my life. I needed to talk to other people who had been through those treatments, but back in 1996 (when I was diagnosed) that wasn’t possible. I found this support board after my RAI had been done. This board was just starting up at that time.

I’ve weighed the evidence and what I saw back in 1996 and what I see now is that the reason most doctors recommend RAI to their patients is that it has the least chance of complications for most people, when all recommendations are followed (such as giving prednisone to patients with active eye disease). As far as I can tell, this safety factor is the only consideration many doctors are able to see. It’s a valid one, no doubt. (I wasn’t given prednisone in 1996 and had eye exacerbations, but that’s another issue entirely.)

But for me there are other considerations, such as how LONG my life will be disrupted by illness, and that’s extremely significant. I’m sure most patients would like to have the information if it’s possible to restore wellness sooner, even if that means deciding on increasing risk factors in certain areas. This is when I’d much rather talk to other patients than to hear what my doctor has to say. I want to hear from even the "outliers" as Bobbi calls them, to know about the range of possibilities. I want to hear from those who feel good and from those who don’t. The object isn’t to be afraid to proceed, but to make the decision fully informed.

For ME, preserving the body intact is also a worthy goal when it can be achieved without unacceptable risk (which of course will be different for each person). My doctor told me that replacement hormone was exactly the same hormone our own thyroids made, so I assumed there would be no difference in my health being hypothyroid and having a fully functioning thyroid. I wasn’t thinking about being stuck on whatever TSH a doctor thought was okay, whether or not that was really normal for me. I found that out rudely when my first endocrinologist left me with a TSH of 4 and a barely normal Free T4, and when I told him I felt awful he said it wasn’t my thyroid levels, but that women my age always had those complaints. (That was in the first year following RAI.) I got a new doctor.

That same doctor didn’t tell me about the possibility of it taking a year even to restore normal thyroid levels, nor did he tell me that a significant number of hypothyroid patients continue to feel unwell in spite of normal thyroid levels, partly because he obviously attributed their complaints to being women. These are not "outlier" issues, but ARE problems I ended up experiencing. (My point: relying on one’s doctor for information sometimes results in disappointments of this nature.)

When people ask me about RAI I try to be fair and tell them that many people have a fairly smooth time and do well later on. Still, I’ve talked to far too many people who echo my own experience to believe that I’m an "outlier", if that is what the intention is here.

[nrssully]

#1074503

I just wanted to let everyone know how my consult with the surgeon went. I was totally surprised. Maybe being here in Tulsa Oklahoma sets us apart from what the new age is doing. I was referred by a good friend who is a surgeon with the VA to see his friend in regards to a thyroidectomy because of my Graves and a hot nodule on my left lobe.

The surgeon was quite surprised that I wanted to elect to have a thyroidectomy over RAI. He said that RAI is the norm and that it is successful in treating my problems 95% of the time. He wouldnt even consider doing a thyroidectomy unless that is really what I wanted because it would be much easier to start with RAI. He stated that the only time they do thyroidectomy is if the client is pregnant or if they have small children at home or if there is cancer.

So here I am now I know what has taken me so long to decide what to do. Everywhere you turn you get a different opinion. I am truly convinced now that one has to weigh the pros and cons and then make a decision. In my case it looks like i will have to entertain RAI cause I can not live with this up and down.

[DianneW]

#1074504

Wow, it must be frustrating to get such different advice. And yes, RAI is certainly worth serious consideration as a treatment choice if you haven’t given it serious thought up to this point. If you still think surgery is an option you would want to talk to a surgeon who is fully on board with the idea and who actually does perform this surgery routinely (and often) exactly for the problems you are having. At this point though, a good, serious talk with your endo and/or a second opinion are certainly in order if you still have lingering doubts on the best way to proceed, given the hot nodule and chances of future problems. Yours isn’t the standard Graves’ Disease case.

Best wishes,

[Conchita_Maria]

#1074505

That is so surprising that a surgeon doesn’t think you should have surgery. Is he an older doctor? Maybe he’s just not comfortable doing them himself? It is a tricky procedure, so if you wanted to have the surgery you definitely want to go to someone who does them a lot.

I was also told by my endo that RAI is the usual treatment for Graves, but I read that surgery is more common than RAI in Europe. It is confusing, so you should do what you feel is right for you. Don’t let anyone pressure you into anything.

[russell]

#1074506

Ski (or others — feel free to jump in) —

As I mentioned last January, I’ve been thinking about TTD as a way to stabilize my GD symptoms. This year, my TSH has bounced between 1.0-2.0 using (and adjusting) tapazole based on monthly tests. I can really tell the difference based on my sleep habits, weight, from 1.0-2.0, and would prefer to be at 2.0 all the time but this is challenging!

If that were the only problem, I could deal with it. But my three year old is constantly exposing me to colds, etc. and probably in part due to a lowered WBC count due to the tapazole (just 5-10 mg/day), I find that I’ve been sick with colds or viruses about 2/3rd of the year. In fact, I’m sicker more than my little guy is! So this is another reason to consider TTD.

Before I make the plunge, I would love to hear comments regarding continuing tapazole vs. TTD, as well as good/bad experiences from thyroid replacement hormones. From your response earlier, it sounds like people are generally happy with their TTD operations and are able to overcome most GD symptoms over the long term. Is that basically right?

thanks!

Russell

[Ski]

#1074507

Hi Russell,

Most people I know have very little trouble with stabilization on thyroid hormone replacement, but there’s no blanket statement I can make for your circumstances, because we’re all different, and different issues arise due to many variables.

If you’ve had trouble maintaining a stable level on Tapazole, you may want to try PTU to see if it’s easier for you to manage.

Thyroidectomy has a high rate of success, in the right hands.

I wish I could give you a "thumbs up" or "thumbs down" on any of this, but the fact is that we really just have to walk the road to find out what it’s like for us.

My doctor said starting from zero with thyroid hormone replacement was easier than working with a moving target and ATDs. For some people ATDs work out okay, for others not so much. I went with RAI and am now well regulated with thyroid hormone replacement. We still need to have our levels checked annually, because our thyroid hormone needs can change depending on age, weight, activity level, fluctuation in reproductive hormones, and other things, but we don’t experience the wild fluctuations that are possible when the antibodies attack, since there’s nothing left for them to attack.

Another consideration is the fact that thyroid hormone replacement doesn’t accumulate in the liver, as ATDs can. Thyroid hormone replacement is chemically identical to the thyroid hormone our body would be releasing, if it could, so there’s no toxicity.

[russell]

#1074508

Ski,

Thanks again for the helpful posting. I’m thrilled to hear that your only have to check your thyroid functions once a year — wow! I have to do this once a month to maintain the kind of stability that I finally realized that I want/need. It has taken me about 15 years of on-again/off-again with PTU and tapazole to understand just how sensitive our systems are to even the smallest adjustments of TSH/T4/T3 balance, and those things shift so slowly its like the proverbial frog in boiling water — you just don’t recognize the changes in yourself until the whole system starts running amock, e.g. anxious sleep, weight loss, thinning hair, etc. And now, I’ve finally come to the realization that having low WBC counts — which come from taking tapazole and PTU — actually have real-world implications. I’ve seen that by being sicker than I’ve ever been, in terms of catching colds, flus, etc from my 3-year old. And who knows whether having lowered immunity can lead to other, more serious health disorders? Frankly, I’d rather not find out, especially given the positive experiences that you and many others seem to have with replacement therapy.

My GP has agreed to refer me to an endo for the TTD, so wish me luck! And thanks for all the guidance and support that you guys provide!!

Russell

[Ski]

#1074509

Wishing you luck! ” title=”Very Happy” />

Just as an aside ~ the ATDs don’t automatically lower your white blood cell count. If your doctor had noted such a thing on your blood tests they would have made you stop taking them. It’s more likely that your increased rate of illness had to do with your body’s general weakness from constantly "fighting" thyroid hormone imbalances, even slight ones. It leaves us vulnerable.

If you’re looking at surgery, find a surgeon who does these procedures a LOT, with very low complication rates. That’s putting your best foot forward.

Let us know how it’s going! Glad we could help. ” title=”Wink” />

[npatterson]

#1074510

We have some great information on surgery. Go to the "contact us" button on the Home Page and ask that it be sent to you. I can’t do it from here.

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