[russell]

in reply to: What took me so long? #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

[russell]

in reply to: What took me so long? #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

[russell]

in reply to: What took me so long? #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

[russell]

in reply to: What took me so long? #1074498

Ski — I missed your reply until just now, but I much appreciate the advice from both of you (btw, I noticed you and I are both Bay Area folks).

I’m not up to speed on the antibody stuff. Could you refer me to something that will help me understand this?

As for block and replace, this is a great idea but I can probably easily target higher TSH using tapazole that will get me to the same place TSH-wise. The problem is stabilizing at those levels. Once I’m dialed into a stable TSH of 1.5 to 2.5 without that annoying bimonthly testing and dose adjustments, I’m pretty sure I’ll be in good shape with all the symptoms (and maybe my hair will even thicken up again!). So that’s the goal and thyroidectomy with a reputable surgeon seems like a smart way to do this based on what I’m hearing.

Best —

Russell

[russell]

in reply to: What took me so long? #1074496

Diane, thanks so much for your informative and helpful reply!

Trying to stabilize at a higher levels makes a lot of sense, and I could get to those levels easily with tapazole (still at modest doses — probably only 5 mg/day). The problem is the intensive monitoring and dose adjustments it requires to stay there, which is the main problem I face today shooting for ANY TSH target.

My GP is very accommodating and lets me do TSH tests once a month, maybe even more frequently if I asked. But its a pain to do that all the time. So my real question is whether with total thyroidectomy (not RAI), levels can be more easily stabilized with replacement therapy than with constant tapazole adjustments.

And other than the obvious but manageable surgical risks, I’m wondering if there are other long-term concerns to TTD that may cause more problems than I have now. From the other posts, it sounds like a dream cure!

Btw, I read a noted medical journal study recently that might explain a lot of TSH testing variance for you and others. It says that TSH tests over-read by 25% after eating, but that most MDs are unaware of that. A true test should be done, like a cholesterol screen, prior to eating.

thanks again!

Russell

[russell]

in reply to: What took me so long? #1074493

I’ve had Graves for about 15 years, have managed it fairly well with tapazole, but am sorely tempted to get a thyroidectomy anyway. I do TSH blood tests with my MD’s permission about every 6-8 weeks to stay on top of this, and am generally using only about 2-5mg of tapazole/day — almost nothing — and I’ve got TSH dialed in between about 0.6 and 2.0 depending on the month.

But despite that, my weight tends to plunge quite easily when levels aren’t perfect — say when TSH is below around 1.5. I’m 5’10” and vary from 140 to 156 which seems dependent on where my TSH is. Plus in the past year, I’ve developed colitis which I think is due to the fact that my stress/anxiety levels increase when my TSH falls — my body just seems more tense overall and it affects my gut, back, facial mannerisms, etc. It also affects my sleep, even at TSH of 0.6.

So the question is whether its worth doing the thyroidectomy and then taking synthroid for life to address these issues given that I’ve managed to keep TSH within the clinically normal range. I’m leaning towards doing it because I think may help my long-term physical and emotional health (not to mention that I probably wouldn’t need so many blood tests!) Thoughts by any of you would be appreciated!

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