[flora]

#1060660

Hi Everyone,
As a fellow Gravester, I know how easy for us to get discouraged on this journey of ours, whether we’re trying to find that perfect dose of thyroid replacement hormone, or an ATD dose that will make things just right for us. Anxious days, blue days, foggy days, achy days, slug-a-bed days, or jumping out of our skin days – some days everything at once – it’s a bumpy ride, and a longer one than we would like, as we work toward finding “our own” normal numbers, and “our own” sweet spot dose. Writing only about my own experience (2 years 6 months since dx), here are a few things I have found on this wonderful forum that have helped me along my ATD trail, and may help others, too.
First, while some lucky people feel a welcome relief on MMI quickly, it can take longer for others – 10 long weeks in my case. I remember being so discouraged and frustrated in those early days, but the sun really did come out, as my fellow members promised – patience was required for sure, but it was certainly worth the wait. More patience would be needed, though ….
Next, I learned for myself that ATD dosing really is as much art as science, and some time spent on the roller coaster was inevitable for me. Tripling my dose early in the game to try and get my TSH to budge sent me out into the hypo-sphere; dosage increases and decreases from there, produced ups and downs in my levels – and lots of symptoms, too, as levels moved around (joint pain, muscle pain and weakness, sleep disturbances and “looking at life from behind a plate glass window”, being among the most miserable). Many members write that tiny dose adjustments had worked best for them, and I discovered that this approach seemed to suit my situation better, too. Instead of cutting my dose in half (as we did once), we have been shaving it by tiny bits lately, trying to find my lowest effective dose. For some other patient, though, a larger change in dose is what’s needed – we are all on our own path to recovery with this disease.
Some members found that making adjustments too quickly made the roller coaster ride longer for them. I had been showing up for labs every 4-6 weeks, usually with dose adjustments being made at the subsequent appointment with my doctor a couple weeks later. But I am finding that allowing a dosage change time to produce results, seems to be working better for me. For someone else, more frequent adjustments could be what’s required, but my dose has been stable for over three months, and I feel that taking my time, is what will get me (yes, more slowly) to “my” spot. And I feel this way, because in the last few weeks, I have got back to riding my sweet horse, and just last Monday, took my first (recreational!) ballet class with my friends in a long time – As one of the amazing facilitators here puts it, “it doesn’t suck to be me” today 😎
I know many of us turn here for support, so I just wanted to post a bit (well, quite a bit!) about my own journey so far, as maybe a little encouragement to other members of the club nobody wants to join – I’m just a fellow patient, though, and not a health professional. As I mentioned, this about my own personal experience – everyone’s journey is different, and like mine, your own doctor is your best resource along the way. It really does get better, remember – and as it does, drop a post to let us know how you are doing, too!
– flora

[snelsen]

#1183953

Flora!
So nice to hear from you! You did a great job of reviewing the whole Graves’ experience in one post! MUCH better than my dibs and dabs that I post now ad then.

One of the most important things you said, is that it take TIME, more time tan we want, to get to that sweet spot. And one of the traps of that is to do labs too early after a dose change. I think with thyroid replacement very small changes are indicated and work best. But for MMI, that is a different ball park, and frequent labs and adjustments probably will be necessary. Important to be monitored by and endo who understands Graves’ (and is not just all about diabetes!, as so many seem to be cause of the epidemic of diabetes in this country) And endo who really “gets it” and gets you, with a large dose of empathy thrown in now and then.

I am so glad you are riding your house, taking ballet and finding your old self and your life back! Your post is very encouraging to others, and it is great to hear from you!
Shirley

[npatterson]

#1183954

What a DELIGHTFUL post. I have printed it out for my scrapbook–which goes back to when this forum was started, over twenty years ago! I have often pleaded with those who posted here when they were in pain and chaos to return when life improved in order to give others HOPE!

Remember: Most people with Graves’ are easily diagnosed and treated, and go on with their lives. Those who are searching the internet (and now Facebook and Twitter, etc.) are those who are NOT among that much larger group that is doing well. We need to remember that, and stay available to those who still need the support and encouragement.
Take care, Nancy

[scanders]

#1183955

Thank you Flora! A timely reminder for me to be patient, which as you know is sometimes easier said than done.

[PattiMeg]

#1183956

Hi everyone! Nancy, you are so right, most of the people who search the Internet about info on Graves, and find this forum, are the folks who are newly diagnosed and scared out of their wits. I know that I found this forum early on and it was SO helpful to me. To add the anxiety of the diagnosis to an already overloaded immune system and emotional state was, at times, overwhelming.

I have to say that of all the posts, the ones that Shirley wrote were always the ones that touched me the most. She has been through so much, and when I was diagnosed with TED, I went back and read many of her postings about the eye disease. She may not know this but, in the worst of it, I would think about Shirley and how she has managed to have a great life in spite of Graves!

It has been 8 years since my Graves diagnosis and 6 years since the TED kicked in. I had RAI soon after my diagnosis and it took about 6-8 months to get my TSH in a good place. I get my TSH checked twice/year and have had to do a little tweaking but I feel great! The TED was a more difficult time. There were about 3 years of constant pain, taping my eyes shut at night, terrible double vision, not to mention the physical changes to one’s appearance. I had 4 surgeries altogether, and the last surgery 2 years ago has my eyes closing properly. The double vision did improve over time, but I have some prisms in my glasses which help when I am tired (the double vision seems to worsen with fatigue). Before the TED diagnosis, I was an avid swimmer and a regular at the YMCA pool. For 3 years I couldn’t swim because the goggles hurt my tender swollen eyes, and the chlorine was unbearable. I am happy to say that I started swimming again this year and am working on doing 60 laps for my 60th birthday in a few weeks!

The Graves sure woke me up to the impermanence of life. It also helped me to see that even though my physical body had changed, who I really am will never change, and that in fact the Graves has helped me to be a more compassionate person.

This forum has been a godsend to me.
Patti

[flora]

#1183957

And one more thing we learned here, Warriors – and that we all forgot to mention – is the priceless gift of good humour! On those days when I really need a dose of laughter and good cheer to go along with my med, I search out our forum friend Boomer on here. Hoping he’s doing great, and that he’ll drop by again sometime!

flora

[Kimberly]

#1183958

So true, Flora! Yes, hoping that Boomer is doing well. By the way, if you hear a good joke, feel free to post in the “Off Topic” thread, which is now a “sticky” post at the top of the forum.

Also, for those who are on Facebook, the GDATF page mixes in some humorous posts with the news and information that we share there.

[JenP]

#1183959

Thank you so much for this post and the responses. I am one of those newly diagnosed and scared out of my wits. I am still waiting to start treatment and have been very sick for a long time before finally being diagnosed. I am so happy to have found this forum. I already can see a light (way off in the distance, LOL) at the end of this journey.

[flora]

#1183960

Hi Jen – and Welcome!

I was/still am so glad for this site, too! You’ll find lots and lots of encouragement and support here – just search around and settle in with us. And if it’s ever a dose of humour that you need, find “Boomer” that I mentioned (under User List), and enjoy!

All the very best to you,
flora

If you ever catch up with Boomer, ask him to check back in here – we all miss his posts, for sure!

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