[Harpy]

#1018331

Just found this on another site that I frequent regularly.
Any good news regarding GD should be shared around, as it tends to be "as rare as hens teeth".
Hope it throws some inspiration into the GD pot.

Hi everybody,

My doctor called with my lab results and I nearly hit the floor.
I have TSH!! And not just a little, but a LOT! – more than I have ever had
during my therapy. (1.3 with range .40 – 3.50)

For those who aren’t familiar with my history – here’s a brief synopsis:
My pituitary hasn’t responded after correction of hyperthyroidism during the
entire 3.4 years on ATD therapy. My thyroid hormones are never high, so we began
to think I had a dying pituitary. Once in a while I could get the TSH to come up
to .8, but that was only when I had gone quite hyPO with the T4 and T3.

So when my TSI (stimulating antibodies) began to fall and head for remission, my
thyroid was left without ANY stimulation. This meant that I had to add
replacement hormone to my ATD therapy, to even keep barely above the hypOthyroid
range. When you have no stimulation, your thyroid will not run.

I’ve also been fighting low-iron anemia during this time, so I recently began
adding a supplement of iron 3-4 times per week. I really have to wonder if the
iron supplements are a big reason why my TSH has suddenly appeared after so many
years???

Other labs:
FT4 1.1 (.8 – 1.
FT3 2.5 (2.0-4.0)

And I am really feeling good too! Been very busy. I caught a cold last Saturday
and was completely over it by Monday. That’s pretty good!

Just had to share the good news.

[marta1234]

#1064067

It is great news especially for us, people staying on ATD and hoping to go on remission one day. That gives us hope that it is all possible.
I have been only 2 months on MMI , trying to stabilize my levels , but remission is my ultimate target. I have difficult time with GD and I was giving up so many times , almost booking RAI. Time goes by I don’t feel great but I will stick to my original plan and continue as long as possible on ATD

Thanks Harpy for the story. We need to see examples to encourage us !

[Ski]

#1064068

Remember that the best chance for success occurs after you’ve been taking ATDs for at least one year (up to two years), and after your levels have remained stable for some period of time. In addition, for your BEST possible shot at attaining a real remission (meaning a period of one year or more of normal thyroid hormone levels without taking ATDs or replacement hormone), check your antibody levels before you stop taking the ATDs.

MOST people have success with treatment on ATDs. A smaller percentage actually achieve remission, but keep in mind that remission is, by definition, a temporary state. No one should feel "less than" because they didn’t achieve full remission, or if their body comes out of it and they relapse.

[snelsen]

#1064069

I have been under the the impression (from several statements by endos that there is not much documented evidence from Thyroid antibodies lab to base any conclusions on treatment, or length of time, or course of the disease process, either in hyperthyroidism or TED. The evidence based guidelines are simply not there. Can you comment on this, Ski?
shirley

[Ski]

#1064070

That’s what I’ve heard too ~ antibody levels seem to be capricious and they don’t give us information on how sick we are or how quickly we can get well, either with GD or TED. Their existence has just been the "final say" in terms of our diagnosis, if there were any question. As of last October’s conference, we heard that there was LIMITED information indicating we MAY have a better shot at remission if our antibody levels are low when we stop taking ATDs. Not anything that’s been tested/reported officially, but it’s a good thing to know, just in case.

[scorpio76]

#1064071

I am a true believer that remission can be accomplished with ATD’s. I am living proof. However, the relapse rate is always high. I was diagnosed with Graves a year ago after surviving a thyroid storm. Through lots of reasearch, advice, a support group, friends, family, a great endo, and persistence…. I was able to achieve remission 3 weeks shy of my one year mark from when I had the storm. I BELIEVED i would achieve remission and I did. I changed my diet by eliminating salt, avoiding any food that triggered fast heart rates or palpitations (called triggers), rested, avoided stress, avoided anything with red dyes, avoided processed foods which meant no fast foods, tried to eat organic as much as possible, and in less than a year, I had achieved remission… only to decide at that time that I wanted a thyroidectomy due to a nodule I had which showed in the front of my neck.

[James]

#1064072

I think it is easy to underestimate the power of good living; positive attitude, improved diet, exercise and the elimination (or more appropriately reduction) of stress. None of these things are a guarantee of remission and definitely not a cure, but positive steps we should all be taking rather. I share a similar experience to Scorpio (in my case almost 7 years in remission). The treatment course requires a good degree of resolve and determination. Remission does not occur overnight, but more likely will include a series of bumps along the way. The good news is that we often become so in tune with our body (mostly from experience), that we are able to be more proactive in our treatment, and deal with any setbacks quickly, at least that has been my experience. For me it was well worth the effort. At the present time I get my blood tested every 8-12 months, just to be sure everything is in check . . . more often if required by my physician, or if I should happen to feel symptoms coming on. I have had false alarms from time to time. Many Graves’ patients will often obsess about the disease to the point where anxiety itself may bring on Graves’ symptoms, but may not be Graves’ related at all. It is important to be vigilant, but not obsess (easier said then done for most of us).

Thanks to everyone for sharing their varied experiences on the board.

James

[Author]

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