[CycleColo2013]

#1060081

I’ve been remiss in touching base; it is great to see everyone’s updates and the new folks that have joined.

Question: Tomorrow marks six weeks post-surgery so I am heading to get first round of labs. I’ve searched previous posts and the general website but it’s likely I am using the wrong terminology. In the past all the appropriate thyroid test boxes haven’t always been checked. If you were a six-week post TT patient, what lab tests would you be rather insistent about to have a baseline and to see where you are at? The Levin article is helpful, but does not really address post-surgery. I am extra curious if your experience prior to surgery has been to be told you are in the “normal” range and yet can’t get out of bed, and you have always felt best at the very high end of normal?

Update, with the hope that this experience is helpful to someone:
So far for me a TT has been the right decision (which I guess is good as I can’t change my mind now!) I truly am glad I got the bugger chopped out. I don’t know if I can describe it well – but from a psychic and physical perspective – despite the post-surgery ups and downs of recovery, I simply feel more normal than I have in a long time.

Almost as important as a lab test is bicycle mileage – I am averaging 75 miles per week (compared to 85 at this time last year). I think the difference is attributable to working more hours and had more business travel and not surgery.

Three quarters of the scar is healing nicely – there’s a bit to one end which still looks bumpy to me – I am using the silicone gel which may or may not be doing anything, but it leaves me some peace of mind that I am doing something. I’ve been vigilant about keeping the cycling jersey zipped up and putting loads of sunscreen on it every time I go out.

Someone mentioned depression in a post- I’ve experienced depression long before graves, so it doesn’t surprise me that this past six weeks I’ve experienced some depression and anxiety. What I can say is that even though right now there is a lot to be stressed about (work, travel, finance, etc.) whatever depression and anxiety I’ve had has mostly not been accompanied by a sort of “panicked” angst that seemed to be a given when hyperthyroid or even when medication kept me normal. For example, last week while I waited to board a flight I left the bag with my medication on a chair at the gate. I realized it when the flight landed. I went to the baggage office, they gave me the numbers for the Denver operations and with their help it was sent overnight to my hotel. If hyper, I would have been distracted in focusing on anything else until the package arrived. Last week there was no fretting about it, at least after I learned that it had been found.

Beyond the mental aspects, physically the ride has been somewhat of a roller coaster though in general it seems to be progressively getting better. I have had the experience of being in the middle of something and then all of a sudden feel so exhausted that I need to shut my eyes for ten minutes or I fall asleep involuntarily. (Luckily the fatigue gods have been with me and this has not happened while driving or cycling!) But in general, I have had more energy than I have had in a long time.

If I had to guess, my body is settling in and I have become hypo. I am tired and sluggish, having difficulty sleeping – and then as a consequence waking, and I’ve gained five pounds in a week. (Although I am ready to blame the weight on the absence of a thyroid, that is not totally a given. Most cyclists tend to lose weight during the height of the season. I don’t pay enough attention to diet in the early part of the season – so my experience has been to be a bit up and down until the last few weeks of August where I come out about 10 pounds less than I was when I started the season. It’s probably stupid to weight myself before then!)

I probably should have started with this: I feel I do need to say again how helpful the experience of others has been on this journey. No two of us are the same when it comes to decision making, drug reactions, lab results, etc. But having some idea of what to expect and what others have experienced has and continues to be incredibly valuable to me – and I thank you for it!

Cheers,
Bill

[Kimberly]

#1180195

Thanks for the update! Hopefully, you will hear from others as to what tests they are having run. The medical guidance only recommends TSH testing after thyroidectomy – which seems odd to me, as they recommend Free T4 and Total T3 after treatment with RAI. If it was me, I would push for the T3/T4 as well – it’s easy, inexpensive, and will likely give you better information than just the TSH.

[snelsen]

#1180196

Kimberly, the TSH only recommendation after TT, sure is illogical and makes no sense to me. HMM. “After a TT” is FOREVER! Since the recommendation for thyroid replacement management, pretty much now is saying to always do the additional testing of the other T”s, free T3 and total T4, (or at least one of them)

So by this stated recommendation after TT, it follows that for the rest of our lives, the management of thyroid replacement hormone. Which I don’t think is correct, or in sync with the current standard of care and guidelines.

Can you straighten out my thinking on this?
Shirley

[Gabe]

#1180197

Hi Bill. Good to hear from you! I had my 6 weeks post TT labs at 3 weeks because I didn’t want to go too far into hyPO. Glad I didn’t wait. TSH was already 25 at 3 weeks. So endo doubled Levothyroxine from 50 to 100 mcgs. He also tested T4,Free and it was normal (.99). I asked why he didn’t test T3 and his response was that he doses off the TSH only. Wasn’t on top of my game that day to challenge him. Hope this helps!

Happy Biking!

Karen

[Kimberly]

#1180198

snelsen wrote:

Can you straighten out my thinking on this?
Shirley

Hi Shirley – I wish I had more insight on this recommendation, but I don’t! All I can say is that if I go through that procedure, I will be pushing for T3/T4 as well as TSH. If someone gets to a point where their levels are good, dose is stable, and they are feeling great, moving to TSH-only might make sense at that point.

[adenure]

#1180199

Hi!

I had my TSH, free T4 & total T3 tested (as my insurance at the time didn’t test free T3). I was on 100 mcg and my TSH was 6.35 or so at the 6 week point. So, I was increased to 112 mcg & 2 weeks later TSH dropped to .79 then lower 4 weeks after that. It’s basically gone from 0.29 to 1.6 over the last year on that dose. My free T4 is always in the upper range of normal. I started to feel “good” again 4 months post op. after my increase to 112 had been stable about 2 months. Ever since having Graves, I’m more prone to anxiety if I’m very worried about something (something I didn’t deal with before), but it’s not too bad- it usually only happens when my husband has to travel for work- otherwise I’m fine. I think it just takes time. Hopefully your labs will help you get closer to the right dose for you.

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