[SueAndHerZoo]

in reply to: reacting to transition in dosage issues #1182793

I’m in the same club, but opposite medication….. I have this problem with my Levothyroxine. Every time we have changed doses (probably 5 times since I had my thyroid removed one year ago) I have felt it. It’s pretty much become a pattern now: I don’t notice anything until about a week to 10 days, and THEN I go through hell for about 3-4 weeks. Tired, antsy, depressed, cranky, irritable, emotional, sick to my stomach, feel like I’m coming down with something, etc. It has happened too many times for it to be coincidence. I just changed doses again yesterday so I’ve already warned my husband what’s coming.

How do I get through it? The first thing I’ve done for the last 2 changes is to make the change TINY. Maybe it takes twice as long to get to the right level, but at least it’s not a horrific ride getting there. Whatever number my doc told me to drop down to, I only drop HALF that amount. Then I’ll have blood drawn and, if needed, go down a tiny bit more.

The other thing I do is warn people, including myself, NOT to get upset or take anything personally during this time period. And I try to get lots of sleep – being tired while going through the hormonal shift is double trouble. I used to beat myself up trying to figure out why I was feeling lousy and now I just remember “Oh yeah, it’s the dose change – this too shall pass.”

Hopefully we’ll all find our sweet spots soon and be able to get off this ride. Good luck!
Sue

[SueAndHerZoo]

in reply to: Soy exhaustion #1182767

I’m going to have to do a “test” with edamame again in a few weeks because after my “knock down” last weekend, I have heard of several people at work who experienced a similar thing. Crashing fatigue that came on fast, lasted 24-36 hours, and then left. Intestinal issues went along with mine and theirs, so I’m thinking it may have been a bug.

It’s tough trying to figure out what is affecting us with each particular symptom, but I figure by the time I’m ready to retire, I may have most of it figured out!
Sue

[SueAndHerZoo]

in reply to: Soy exhaustion #1182763

Thanks, Kimberly. I now set my alarm for 4:00 a.m. to take my Levothyroxine so it’s definitely taken at least 4 hours after and before any food or supplements.

It seems crazy that I would be that tired from eating soy but it’s happened before so I may have to test it again in a few weeks. As you said, I may not be allergic to it but I may be very sensitive to it.

Thanks for the response.
Sue

[SueAndHerZoo]

in reply to: Is there always weight gain after TT? RAI? #1182698

Hi WWW.
I haven’t read my journey in quite a while so, off the top of my head, I can’t recall if I ever mentioned doing well and then having things go bad again. At least not since I had the TT. BEFORE the TT yes, I had ups and downs, remissions and crashes, and fluctuations were very common. After the TT, even my worst days were still better than my best days before TT.

Perhaps what you read was that I seem to have symptoms each time we change my dose of Levothyroxine. Some people notice, some don’t, but I’m one of the unfortunate ones who experiences some discomfort for a few weeks after we change doses.

Good luck in whatever you decide.
Sue

[SueAndHerZoo]

in reply to: Is there always weight gain after TT? RAI? #1182694

Nope, not always weight gain. I had my TT on July 16, 2013, and I am 5 pounds less than when I went into surgery. I seem to fluctuate about 2-3 pounds, up and down, but that’s pretty normal for everyone whether they have thyroid issues or not.

I feel better, therefore I am more active and I tend to eat better. When I felt lousy, I was always looking for comfort food and junk food. I could lose more if I were trying but am happy with the weight right now.

Like she said – no guarantees with this disease! Some of it is out of our control, but some of it is totally in our power.
Sue

[SueAndHerZoo]

in reply to: Meds interfering with Levothyroxine #1182414

Kimberly wrote:

SueAndHerZoo wrote:

Since that check up I lowered my dose a slight bit more and was very eager to hear about my results at yesterday’s appointment.

Hi Sue – Hopefully, the dose change that you mentioned above was done in conjunction with your doctor. (I wasn’t sure from your post). Making a dose change — even if you are feeling specific symptoms — without a current set of labs and a doctor’s OK can definitely cause a setback.

That’s interesting about the colitis meds…I had not heard of issues with that specific med, but I do know of patients who have discontinued taking birth control pills and have had to start over in finding the “sweet spot” of their thyroid meds. Definitely a good reminder that nothing happens in isolation when it comes to medications and supplements!

Hi Kimberly.
Yes, after my last appointment the doc offered me the choice of staying where I was with my meds or bringing it down a tiny bit more. At first I told him I’d stay where I was but a week later I called him and told him I was going to lower it.

The colitis med was a steroid drug…… don’t know if that’s a common contraindication or not, but I have to guess that’s what caused my bottoming out again.

Now I’m in for 6 weeks of feeling “hormonal” as my body adjusts to another change, then I’ll have my blood checked again. Really wish I liked rollercoasters.
Sue

[SueAndHerZoo]

in reply to: Meds interfering with Levothyroxine #1182412

Thanks, Raspberry, but how frustrating, huh? I mean, now that I’m real hyper again, my colitis will probably flare up, which means I’ll start taking colitis meds, which means my levothyroxine med will be affected, etc. etc. etc. Talk about a vicious cycle!

Ah well, could always be worse. I was trying to figure out why the “side affects” from the last dosage change were lasting soooooo long (rather than just the usual 5 or 6 weeks) and now I see it’s because my dose KEPT changing, not from my levothyroxine intake, but from my colitis med reduction and eventual elimination of it.

Guess there’s always more to learn about this challenge of ours, but as long as we all keep sharing with each other, we’ll soon be “know it alls”.
Sue

[SueAndHerZoo]

in reply to: Pondering TT #1182400

Hi there.
I had a TT last July and haven’t regretted it for a single moment. I actually had to push my endo to refer me to a surgeon… he was pushing for RAI or continuing to chase a consistent level using ATD’s. I was sick of the rollercoaster so met with the surgeon, was more convinced than ever that I wanted my thyroid out, and had it done as soon as she had an opening.

I was on ATD’s for a few years, then had a remission, then when the Graves came back to life it was all over the place. It’s much easier for me to find my “sweet spot” with meds now that I don’t have a thyroid confusing the issue.

Good luck with your decision, and read, read, and read some more!
Sue

[SueAndHerZoo]

in reply to: Well, here goes! #1173698

Hurray – great to hear! I can agree with just about everything you said except for the “no symptoms when changing doses.” Still, a small price to pay so no complaints here.

I can REALLY relate to the heat intolerance issue. I normally dread and fear spring and summer because of it but this year, I’m really curious to see how well I can handle heat.

So glad you have your life back. Don’t forget to put sunscreen on the scar – I was told to do it for a year.
Sue

[SueAndHerZoo]

in reply to: TAKING TWO DIFFERENT MCG OF SYNTHROID, HOW SPREAD OUT THE DOSES? #1182297

Sorry I’m just seeing this post now and it looks like you already have some great answers but thought I’d add my experience, too.

I do 100 mcg. 5x a week and 112 mcg. twice a week and doc didn’t care what days I took which. I have no idea why but I chose Friday and Monday, too. I swear I feel a little hyper on the 112 days, but it’s probably just psychological.
Sue

[SueAndHerZoo]

in reply to: 3 weeks post TT #1182258

Hurray – great to hear! Soon you’ll be singing my song: “A bad day now is still MUCH better than a good day was before TT!”
Sue

[SueAndHerZoo]

in reply to: Could it be I’m there? #1182214

Great news – glad to hear it and thanks for sharing! I find that between 6-8 weeks after I start a new dose I am “level” and can determine how I feel at the new level. Before 6 weeks? Not a chance. I get so many symptoms every time I tweak my Levo regardless of what direction I’m tweaking it in.

You say Synthroid works better for you than Levo….. do you mean in the way you feel or the way your labs look? I think Levothyroxine must be working well for me because each time we change my dosage it’s to go LOWER so apparently I’m converting just fine. But I often worry that if they change manufacturers I will have to adjust to new levels again. I contacted my pharmacy and expressed my concerns about the generic drug changing and they assured me they would notify me if and when that happens. Guess we’ll see.

Didn’t mean to get off track. So glad you’re feeling good, and good luck with the weight loss. I’ve been doing Weight Watchers for about 7 weeks now and am down 7 pounds so I’m happy. I’m sure that rate of loss won’t continue forever but I’ll keep at it as best I can. Tis the time of year for most of us to shed the winter pounds.
Sue

[SueAndHerZoo]

in reply to: Hi all, back in touch #1182180

Welcome back, Deb… so sorry you’ve been through hell. I guess now is the time to remember that as with anything thyroid related, PATIENCE is the key (was pretty much a mantra for me while going through my thyroid experiences). I know you’ve been suffering for a long time so the reminder to be patient might justifiably p/ss you off, but try to remember that the worst is behind you and it’s only going to keep getting better from now on.

You WILL have a normal life again, or maybe even better than “normal”. I’m still not at my ideal level (surgery was July 16) but I’m darned close and a bad day lately is much, much better than a good day was before TT.

Sending positive energy and healing thoughts your way.
Sue

[SueAndHerZoo]

in reply to: And…it’s done :) #1182156

Hurray! Welcome to the TT Club.
Sue

[SueAndHerZoo]

in reply to: antidepressants and Graves #1182129

As far as I can tell, no interaction. I was on anti-depressants (for anxiety) long before I was diagnosed with Graves and have never had to change the dosage. Go for it…. if there is help available to you, take it.
Sue

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