[SueAndHerZoo]

#1060713

Hello old and new friends…… figured I was LONG overdue to pop in and provide an update on my situation, so here goes. As I tend to ramble, prepare yourself for a long one.

I elected to have my thyroid removed in July of 2013. As I said then and still say now, BEST DECISION I EVER MADE. Yes, the journey since surgery has had some ups and downs, but nothing like the ups and downs from before surgery. It took maybe a year to find the “perfect” dose of Levothyroxine but that’s partially because I am a perfectionist and wanted to keep on tweaking until I thought it was absolutely perfect. It also took a long time because I insisted on only make dose changes in TINY increments. Whatever dose change the doc recommended, I would go slower than he recommended. He finally gave up and just started asking ME what dose combinations I was trying and patiently kept track of it and ordered blood tests to check on my levels and give me a report card.

The reason I insisted on making changes in small increments is because I always go through side affects with a dose change. Regardless of how small it is, my body notices! It’s not my imagination, it happens every time, like clockwork, same cycle of symptoms, so I learned to know what to expect. And it’s not like I was expecting them and bringing them on – I would just be living life and be somewhat surprised when I started feeling unwell and then I would go to my journal of past symptoms and have that “Ah Ha” moment, realizing I was going through a dose change (either intentional or un-intentional – I’ll explain later). I don’t have my journal in front of me so I can’t list all the symptoms but suffice it to say that I would go through about 6 weeks of bodily and emotional changes that I got through by reminding myself that “this too shall pass”. I doubt most people even notice the changes when they switch doses but I am so in tune with my very sensitive system that I notice everything, darn it. The good news is none of the symptoms are enough to render me non-functional . . . life still goes on, unlike some of the symptoms from BEFORE surgery.

What I mean by intentional or un-intentional dose changes is that some I have control over, some I don’t. Yes, when we’re trying to get me in a good range, we change my dose a little. But there are other things that can change my dose that are beyond my control, such as my generic Levothyroxine being provided by a different manufacturer (meaning the composition and dose of active T4 may vary from maker to maker) and more commonly, interference with other meds I need to take from time to time. Since I also have colitis, I am frequently put on and taken off of steroids and I KNOW that somehow interferes with my uptake of my Levothyroxine.

The un-intentional dose change symptoms that bother me the most are the ones that I cannot figure out, like the one I’m going through right now. I have consistently been taking the same medications at the same doses for four months now, but I feel like I’m in the middle of a round of those side affects. I have to wonder if the pharmacy changed providers without telling me. I had requested last year that they notify me if and when that happens but I don’t have a lot of confidence that they will – they never have.

But again, even these 6 weeks or so of side affects don’t ever make me regret having the surgery. So many health issues I suffered with before are now gone and my only regret is that I didn’t have it removed sooner. It’s amazing how many bodily functions are regulated by our thyroid and if you have a constantly fluctuating one, it can wreak havoc.

Feel free to ask questions….. I may not have given updates on what you’re specifically interested in hearing about so go ahead and ask.

Hope everyone is doing well and continuing to beat this monster. It can be done!
Sue

[flora]

#1184287

Welcome back, Sue! Your story has really made me smile – well actually, stand up and cheer – so good to hear you’ve tamed it at last!

Thanks for sharing, and all the very best,
flora

[Kimberly]

#1184288

Thanks so much for checking in, Sue!

Yes, a change in generic manufacturers can have an impact on absorption. Is there some type of code on the label from your pharmacy? My pharmacy uses a 3-letter code for generics, so (if the code is right), you should be able to tell if there is a switch.

So glad to hear that you are happy with your decision! If you get a chance, please stop by the “Success stories” thread in the “sticky” section at the top of the posts. It’s always inspiring for newbies to hear from those who have “been there, done that”!

[PattiMeg]

#1184289

Just a quick comment – I had issues 4-5 years ago getting TSH under control after RAI for Graves. My doc suggested I switch from generic Levothyrozine to Synthroid (brand) and my thyroid levels have been stable. I have heard anecdotal stories of people having the same experience when on the generic. Once they switched to Synthroid the variability goes away. It is definitely more expensive ($4/month vs $35/month for the brand) but it is worth it.

[Liz1967]

#1184290

The manufacturer is on my prescription bottle, in my case it is Lannett. While absorption may vary between manufacturers, including Name brands, within the manufacturer, it remains stable. In fact, Lannett levothyroxine has a better absorption rate than Synthroid. One brand comes in a gelatin capsule which makes it less affected by things in your stomach, I think Tirosint. Anyway, things like proton pump inhibitors, like Prilosec, can interfere with absorption. Coffee can cut absorption by 25%, which is okay as long as you either drink coffee regularly and a slightly higher dose takes care of that, or you don’t drink coffee and you need lower dose. Steroids affect absorption definitely. Weight changes, if significant, change things too. That being said, people with normal thyroids have periods when they feel “off”. I tended to forget that because you don’t pay attention when you don’t have a health issue or aren’t on meds of any kind. Now I just ignore the stuff I would have ignored before Graves! Like you, having the thyroid gone was a relief and I am happy to feel normal. Glad you are doing well too.

[SueAndHerZoo]

#1184291

Thanks for the greetings and the feedback on the variability of dosages from different manufacturers. I will definitely search the fine print on my prescription bottle when I get home to see if I can find any clues or evidence that I should be tracking.

Sue

[snelsen]

#1184292

Sue and Flora!
How NICE to see a couple “old timers” on the forum! Glad you are both slugging along. Same with me. Still eye issues with right eye closing, and have to have sunglasses at the ready at all times. But manageable. As mentioned in this thread, I found Synthroid a better choice for me that a generic. Yep, as PattiMeg says, it is much more expensive .

Just a note today.
Shirley

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