[SueAndHerZoo]

in reply to: Potency variations between generic types of levothyroxine #1185208

I had a TT in 2013 and was put on generic Levo. I’ve struggled since then to keep my TSH consistent so my doc decided about a year ago to put me on Synthroid instead to see if that helps. I don’t think it did because I’m still fluctuating all over the place but at least now I know that the medication is not the issue.
Sue

[SueAndHerZoo]

in reply to: Question regarding Endo visits since TT #1185172

Well said, Liz, and a great reminder for all of us. I just recently (three weeks or so) adopted the same concept….. not every little thing my body does can be attributed to my lack of thyroid, or my weight change, or my change in diet, etc. It MIGHT be one of those things, it might be a combination of all three, it might be the weather, or it might just be ME. I have started to “accept” that I’m not going to feel wonderful every week of my life.

But, on the other hand, I still try to analyze and figure out what MIGHT BE causing symptoms if they seem to come out of the blue. I would love to be able to figure out which are things in my control and which are not (kind of like the Serenity Prayer, ” . . . . the wisdom to know the difference”).

I can feel that my TSH level is moving again right now and will have blood drawn soon to figure out which way it’s going, and I think I have a hunch why it might be shifting, but rather than obsess on it or try to “fix it”, I’m just going to try to narrow it down to see if it’s something I can adjust, and if not, I’ll just adjust my Synthroid.

Hope you all (or those of you in the states) had a nice Thanksgiving.
Sue

[SueAndHerZoo]

in reply to: Question regarding Endo visits since TT #1185164

Sorry it took me so long to reply to this thread! Yes, my endo would palpate my neck area every time I went for a follow up. A few times I had thought to ask him why but he was one of those non-stop chatterboxes and not only couldn’t I get a word in, but if I did manage to ask a question, I might get him off on another 20 minute dissertation. I now let my GP handle my blood tests and Synthroid… figured I don’t need an Endo if I have no thyroid.
Sue

[SueAndHerZoo]

in reply to: Stored thyroid tissue after TT? #1185160

Ellen_B wrote:

Hi all,
I agree it is a difficult task– finding out the how’s and why’s one levels are just all over the place. Could finding out where the T4 conversion takes place tell us something about the how’s and why’s? T3 is more active than the T4. I am not sure the gut is where the T4 is mainly converted to T3. It may be just one (and only some) of the places. I have read that T4 is converted to T3 as blood containing T4 passes through the liver, kidney, muscles and other organs. Almost all tissues contain deiodinase enzymes so T4 gets converted into T3 in almost all cells.

What does this information have anything to do with finding a reason– the cause of why one’s thyroid hormone levels are fluctuating? Is it even important to know what the levels are of your T3? If it is which test can be done to find out.?

I admire your (Sue and Her Zoo’s) style–looking for an answer by means of research, study and hypothesizing. I do not consider you attitude of “not accepting” a fault. It’s the never give up attitude of yours and others that can lead possibly to an answer and to getting and feeling better. You set a find example for all of us to follow!

Thanks for your kinds words, Ellen. As much as I sometimes wish I wasn’t so consumed with getting the answers to some of my “medical mysteries”, I know I will never give up. Sometimes when I’m asking my Higher Powers why I have so many medical challenges and what lesson(s) I’m supposed to be learning from them, I get the feeling that perhaps it’s so that I can share all I learn with others who suffer with similar challenges.

But I’m not going to let myself put life on hold while I’m searching for all the answers because I’d waste what’s left of my life doing that…. I’m now determined to live life to its fullest in spite of how I feel physically because if I keep putting things off until I’m feeling great, that may never happen, so feeling “OK” has got to be good enough some days.
Sue

[SueAndHerZoo]

in reply to: Stored thyroid tissue after TT? #1185159

Wow, that’s really interesting about it “possibly growing back”… didn’t know that. But it’s obviously not my problem because my TSH is too high, not too low. Unless I grew one back after surgery and then my body killed it off.

I need to let go and give up on trying to figure out the how’s and why’s . . . my levels are just all over the place and I may never know the reasons. But wish me luck with that because I’ve never been one to just “accept”… I research and study and hypothesize to a fault.
Sue

[SueAndHerZoo]

in reply to: Stored thyroid tissue after TT? #1185155

I just went back and looked through all my notes of dosing from TT to now. It seems I’ve never been able to keep a stable level for more than 9 months (this latest run). Part of the appeal of choosing to have a TT was so that I could get off the rollercoaster and have a consistent level by medication only. Appears that’s not working for me… at least not yet.

Probably just coincidence but the last time that I had a drastic rise in TSH was last September: I was at 84 mcg a day 7 months later shot up to TSH of 4.6. Decided to switch to brand instead of generic (thinking maybe that’s why my TSH kept changing) and went up to 94 mcg. That took my TSH crashing down to .37. Went back down to 88 where I’ve been for 9 months.

I had been seeing an Endo up until 6 months ago. I never really liked him and it was a real hassle to get to his office every few months just to have him read me the lab result (which I already had from the online portal). Then he would pend 20 minutes telling me about his personal accomplishments. I decided since all he was doing was ordering blood labs and writing scripts, my internal medicine doc could do that so I stopped seeing him.

So you think I should look for another endo and have them look at this rollercoaster or just keep chasing the curve? Does anyone find diet changes affect your TSH? This is so maddening because I am sensitive to changes in doses and go feel badly each time I change a dose, which I seem to be doing every few months.

Thanks for your thoughts.
Sue

[SueAndHerZoo]

in reply to: Just sharing some “ah HA!” findings #1185148

Hi Guys.
I always have a lab slip in my car with me so that if I’m feeling “off” I can stop at a lab and have my TSH tested. I saw the results online this morning and it was 6.X (forget exactly). I have NEVER been that high so it explains me feeling off, but I really thought it would be low, NOT high.

Anyway, when I saw the result I called the doctor’s office to ask if I should:
1. Increase my dosage
2. Get additional tests done
3. Come see the doctor

The answer when the doc called back was “Don’t change doses, don’t get more testing done, come see me Friday at 11:00.”

However, this is not my endo…. I stopped seeing him about 2 years ago (never did like him and didn’t feel I needed an expert anymore since I don’t have a thyroid and all I need is lab orders and a scrip) so this is my internal medicine doc. Guess we’ll find out how knowledgable she is about this stuff Friday.

So… I’ll wait till then, and she’ll probably then order more tests which will drag into next week, and I guess I just hang in there for another week or two. Wish there were a pill for patience.
Sue

[SueAndHerZoo]

in reply to: Just sharing some “ah HA!” findings #1185145

Thanks for understanding my frustration…. always trying to do the “right thing” for my body but it seems the more I try to get healthy, the more complicated it gets.

I’m not totally off of steroids, I’m on a corticosteroid and am weaned down to the lowest dose and I may just stay there because I need some CONSISTENCY. Also, when I went off gluten and soy, I added some supplements: B12, multivitamin, and magnesium. God only knows what I’ve done to my TSH levels with all the changes and, you’re right, finding a lifestyle, foods, and supplements that are consistent are the best way to keep my thyroid levels stable. Hopefully this latest plan is it.

I have no idea why my TSH is high instead of low, but I think I need to stop beating myself up trying to find the answer and just admit that I will never have all the answers to everything. (Lord, help me accept the things I cannot change!)

Now my question is, and I guess it will be up to my doctor: should I call the doc and ask for the higher dosage of Synthroid or should I ask for a free T3 and T4 test first? I actually only took half a Synthroid this morning and feel better than I have in the past few weeks but maybe that’s coincidence. Still confusing, though.

Thanks for listening… I guess I’ll be riding this rollercoaster and chasing the curve forever.
Sue

[SueAndHerZoo]

in reply to: Just sharing some “ah HA!” findings #1185143

OMG – I’m freaking out – WTF?!?!?! My lab results are in already (which is great news) and I was actually nervous about opening them. I so desperately wanted them to tell me that I am overmedicated because that’s how I feel so if I got back a “normal” reading it would be really frustrating. Well…. I’m way out of “normal” range, but in the opposite direction!!!!! My TSH is HIGHER than it’s ever been, not lower!

I’m sitting here at the office totally blown away and confused. (and also mad at myself for jumping the gun and only taking half a Synthroid this morning because I was so sure my TSH would be too LOW).

In answer to your questions, Liz, I have colitis and have tried several different diets to control it because I hate being on steroids. I was vegan for 6 months so I ate a LOT of soy, but it didn’t help my colitis at all so I went back to meat. Next the doc suggested I try “gluten free” and I actually had some stool testing done that revealed I do react strongly to gluten and soy, thus…. I gave them both up 2 months ago. But why in hell would giving those up cause my TSH to be HIGH when everything I read said giving those up would cause better absorption of Synthroid?

Sorry, I’m fired up right now and don’t know what to do…. I did NOT see this coming.
Sue

[SueAndHerZoo]

in reply to: Blast from the past #1185085

Duh….. of course you’re right, Kimberly….. I did not click the “Subscribe” button. It’s been so long since I’ve been here I forgot that it doesn’t automatically “subscribe” me when I post a message. Thanks for the reminder.

All the people on the colitis forum I’m a member of swear by giving up gluten and have been urging me to do it for years. Me, being a stubborn old gal who believes only what she WANTS to believe, was never willing to do that and since most doctors tell me the “gluten free” craze is just a fad, I chose to believe them. But I finally broke down and spent some money on a stool sample test that pinpoints what foods you are sensitive to and what foods cause inflammation, and my gluten score was VERY high. That was enough to cause me to give it a try, and I’m amazed at how many lousy physical things I had learned to accept and live with have disappeared. Right now I’m just so angry at myself for not having tried it sooner. And all those awful side affects of “TSH level fluctuations” may have not been that at all.

Part of me hopes that this is just me being optimistic and that gluten-free hasn’t been my problem all along (because it’s pretty hard to figure out what to eat) but the other part of me hopes that this IS my problem because then the quality of my life for the rest of my life is going to be a LOT better from now on.

Anyway, I’m leaving my Synthroid dosage right where it is. And I’ll be coming off the steroid much sooner than usual because giving up gluten has improved my colitis greatly already.

I’m off to go catch up on what I’ve missed here on the forum and see if I can provide any feedback from a 4-year post TT patient.
Sue

[SueAndHerZoo]

in reply to: Blast from the past #1185083

Thanks, guys. I didn’t get an e-mail notification that there were replies to my thread so I apologize for the late response. I agree that messing with my Synthroid dosage, especially for such a short term, would be causing more problems than it’s worth so I am staying at my 88 mcg. per day and will just ride out the rollercoaster.

Actually, I have been gluten-free for 5 days and feel SO MUCH BETTER in so many ways so who knows….maybe it wasn’t the steroids messing with the Synthroid…. maybe it’s just been gluten messing with me all these decades.
Sue

[SueAndHerZoo]

in reply to: Request immediate response re holistic/dietary treatment #1184824

snelsen wrote:

Many of us old timers pop on now and then to see what is going on. I think it is reassuring, too, to read posts from the very beginning, when we are truly lost, convinced that life as we knew it is gone forever..then watch the progression to to a place where things are so much better.

Here, here! Totally agree, especially with the “so much better”. In my case, not only better than when I was truly lost but even better than before I was diagnosed with Graves. Sometimes this disease is festering below the surface for decades before we actually know there’s a problem. We just get so used to feeling the way we do we don’t even realize we could and should be feeling better.
Sue

[SueAndHerZoo]

in reply to: Request immediate response re holistic/dietary treatment #1184818

snelsen wrote:

I should have been more clear about WHEN I had my thyroidectomy! It was 1959, almost 60 years ago! At a time when CT scans and MRI’s did not exist!

In the recent past, hospitalization times have decreased drastically. Much of it is a good thing. I was ready to go home, get out of there, on post op day #1. But that was unheard of at that time. I also had an 18 month old, which I did not mention. And my husband and I were both in med school. I later switched to nursing.

Geez, Shirley, you didn’t have much on your plate at that time, did ya? Holy crap – what a warrior and survivor!
Sue

[SueAndHerZoo]

in reply to: Request immediate response re holistic/dietary treatment #1184816

My surgery didn’t start till about 4:30 in the afternoon, I believe I was in the recovery room from 8:00 to 9:00 p.m., then into my hospital room for snacks and beverages. The next morning I ate a big breakfast and was released from the hospital at noon.

I was functional and out and about within 2 days but it was nice to have the time off from work so that I could nap or lie down intermittently throughout the day as needed. Pain was never an issue – I never used the pain meds they sent me home with and took Tylenol only the first 24 hours after surgery. Truly, and this may sound stupid, but it was kind of like a vacation for me. Time off from work, people doing things for me, no one expecting me to be up to doing anything, etc.
Sue

[SueAndHerZoo]

in reply to: Request immediate response re holistic/dietary treatment #1184812

Glad I could help.
Sue

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