[SueAndHerZoo]

in reply to: Ratio between TSH and Free T4 levels? #1183193

Hey there Ras Lady -nice to “see” you! Cautious hope – I like it, and I think every Gravester needs to find that and hang onto it if they haven’t already. Oh, and our Graves Rage, we need to hang onto that, too. Even though I probably don’t technically qualify as having Graves Rage now that I don’t have a thyroid, I still pretend I do and use it to my advantage when it’s convenient. Be afraid, co-workers…. be very afraid.

I think you should go ahead and say you’re in remission and celebrate it every minute you can. It’s like a vacation… you know it’s got to end so you better enjoy the hell out of it while it lasts!

Sorry to hear ‘life events” are disrupting things for you but I guess we should be grateful for those. After all, consider the alternative: non-life events.

I have no idea what it feels like to be at an acceptable TSH level, never mind to actually STAY at some level for more than 6 weeks so that is the light at the end of the tunnel I’m driving towards, and I’m being cautiously hopeful I’ll someday see it.

Hang in there… we’re a tough bunch of broads and we can and will get through these hurdles.
Sue

[SueAndHerZoo]

in reply to: Puzzling Symptoms? #1183124

Thanks for chiming in, Flora. It’s sad that we go through this, but there truly IS comfort in knowing it’s not our imagination and it’s not caused by something else. When your doc tells you he doesn’t think it’s possible to feel so many symptoms from a tiny change it makes you start to second-guess your own sanity, but we KNOW what we’re feeling, and if it happens every time we change doses, that’s pretty conclusive to me.

Misery loves company – but sorry that others have to be miserable with me. What helps me get through these times the most is reminding myself that this WILL pass. Knowing why it’s happening and that it has come and gone before keeps me from getting too depressed about it.

This time my symptoms seemed to start later than usual so I thought maybe, just maybe, I was going to slide through this dose change without too much trouble, but about 5 days ago it came on and is ebbing and flowing. I actually called in sick yesterday because of it, but today felt much better, until about an hour ago….. it’s creeping up again. Maybe it’s on it’s way out for this round but I get my blood drawn in about 10 days, doc will tell me my TSH is still too low, and I’ll be off and running into another dose change. We all WILL find that Goldilocks dose eventually, right? RIGHT?!?!?!
Sue

[SueAndHerZoo]

in reply to: Importance of TSH #1183103

MY TSH is always insanely low (highest we’ve gotten it so far was .04 and then it dropped back to .02) and when I told the doc I feel fine, he told me that a suppressed TSH could cause heart issues and we had to get it higher.
Sue

[SueAndHerZoo]

in reply to: Puzzling Symptoms? #1183118

Don’t have any medical or science-based answers for you but thought you might find comfort in knowing that I can totally relate to all of your symptoms, and yes, they are very hard to deal with.

I, and several others on this forum, seem to react strongly whenever our levels fluctuate, even a tiny bit. Every time I need to change doses of Levo (which has been almost every 8 weeks since I had my thyroid removed 15 months ago) I get the symptoms you describe: anxiety, emotional, can’t focus, can’t remember anything, can’t stay on one train of thought long enough to follow it through, tired but antsy, etc. My ticks act up, panic attacks return, I’m hot and then cold, I can’t sleep but I’m exhausted, etc.

So my non-medical guess is that your levels have fluctuated and that’s what you’re feeling. And yes, even though I haven’t been diagnosed with an eye problem (yet) I do notice changes in my eyes when I’m going through this.

I started tracking how I felt right after my surgery and without fail, every time we change my dose I start to feel these awful symptoms about 10-12 days after the change and they last for about 4-5 weeks. Then just as they start to disappear and begin to feel good, I have my blood drawn, doc finds that my TSH is way too low and FT4 is high, and we lower the dose again. This last time he wanted me to make a big drop in my Levo to get me (finally) to where I should be, but I refuse to make any drastic changes and would rather make these frequent, small changes. The last thing I want is to go “too low” and then have to climb up again.

And yes, a lot of the symptoms are found in both hypo and hyper, and I think fluctuation is the real culprit.

Hope you’re feeling better soon and that you find doctors who understand and help.
Sue

[SueAndHerZoo]

in reply to: How about itchy eyelids? #1183076

Thank you, Christina! Your post is the final piece to this puzzle I needed! I have been working with both companies of the foods that allegedly caused my eye issue and we can’t seem to find a common ingredient in both foods that would cause this.

We had a Health Fair at work the other day and I had a long talk with the nutritionist there. I explained what happened and my health history and she highly doubts it was a food allergy. She’s betting it was the change in thyroid meds, too.

Yes, my eye LIDS get very itchy, and then probably irritated from me scratching them, and the next morning they are swollen. And yes, I am I the midst of yet another dose change.

I am going to venture out and try those foods that I thought caused me problems in the next week or two and see if it happens again. if it doesn’t, then it’s not a food allergy.

Thanks for sharing your experience. . . it helped so much in trying to figure this out.
Sue

[SueAndHerZoo]

in reply to: How about itchy eyelids? #1183073

Yes, I pretty much have eaten the same for decades, that’s why when I DID try something brand new to me and then had itchy and puffy eyes a few hours later I thought it must be a food allergy thing (even though I’ve never been allergic to anything in my life).

When it happened again Sunday with a food I have eaten many times, and when the nutritionists from each place gave me the full list of ingredients, I’m not so sure it’s a food allergy anymore.

Googling puffy eyelids and itchy eyelids and thyroid, I find a lot of posts that say thyroid level fluctuations can and do cause this, so who knows? I guess I’ll wait a few weeks and try one of these foods again to see what happens.

Sue

[SueAndHerZoo]

in reply to: Trying to find the sweet spot after TT #1183054

Hi Sara.
We have similar problems (and similar threads) going at the same time. I had my TT in July of 2013 and we have changed my dose of Levothyroxine about every 6 weeks since then. We have been constantly lowering my dose and my TSH is still practically non-existent.

I have considered changing to Synthroid but since my TSH is always too low, I figure Levo work just fine for me – almost too good! And I fear making another change since I have been changing doses for over a year. I feel like I would almost have to start all over again if I change meds at this point. Perhaps if this latest tweak to my dosage doesn’t get me closer to “normal” then I will bite the bullet and change to Synthroid.

The constant battle I have with my endo is that he’d like to see me lower my doses quicker than I am willing to. I don’t want to go extreme in either direction because then, as with you, you bounce too far the other way. So when I change doses, I only change by 6 mcg. or less per day. If that’s not enough then I’ll lower it another 3-6 mcg the next time, but no drastic changes for me – I can’t handle the side affects.

My endo tells me that I can’t be feeling side affects from changing doses at such small increments, but I KNOW what I’m feeling and I’ve seen the pattern. About 10-12 days after a dose change I start feeling lousy and go through a series of ailments that last for about 4 weeks. I started tracking what I was feeling and when I was feeling it and there is a clear pattern.

The only advice I have for you is to start making smaller dose changes. Changing is hard enough, but to swing back and forth between hyper and hypo has got to be pure hell.

Good luck, and keep us posted.
Sue

[SueAndHerZoo]

in reply to: I lower my Levo and my TSH drops even MORE! #1183002

Hi Shirley.
Baffling and frustrating, isn’t it? Everything we know and read says that if you lower your Levo then your TSH will come up, and I understand and accept that this can sometimes happen slowly and that we have to keep experimenting, but when I lower my Levothyroxine and the TSH goes even LOWER!?!?!? Makes no sense, so all I can figure is there must be something going on in my body that interferes with the absorption? Another med that I changed doses on? Taking something too close to the other drug? My Vitamin D and calcium supplements interfering? As it is, I set my alarm for 4:00 a.m. and take my Levo at that time to make sure there is nothing else going in my body for at least 4 hours before or after. Not sure what more I can do.

I too, have more hypo symptoms than hyper in that I am cold all the time and my resting heart rate is VERY low. My colitis is nicely under control but I don’t know if that’s my colitis meds or if it’s being hypo that has slowed things down. My anxiety levels and emotions are all over the place but that always happens when we change my dose, and we have been changing doses every 6 weeks since my surgery last July. God bless my husband for understanding.

I take different doses on different days and lay out a week’s worth at a time. Right now I’m doing 88 mcg. 5 times a week and 100 mcg. twice a week. I think we have to mix doses if we ever want to “fine tune” the right amount for our unique bodies and, as we’ve seen, even a few mcg. a day makes a difference.

Good luck to us all!
Sue

[SueAndHerZoo]

in reply to: I lower my Levo and my TSH drops even MORE! #1183000

Hi Sara. Sorry to take comfort at your discomfort, but it truly IS comforting to know that others go through this, too. Having to go through it is bad enough, but to start thinking you are an oddball or unique or have some “special” issues going on makes it even worse. So I guess this part of the TT challenge is common, and that gives me hope.

Right after my post when I learned I had gotten even MORE hyper, I sat with a calculator and figured out what I was going to change my new dosage to, dropping the Levo even lower yet doing it slowly so I can minimize the side affects that come with changing. So I worked out a schedule, and the next day my endo’s assistant called to let me know my levels. I told her I already knew because I saw them on line and told her my new plan. She went and spoke to the doctor, and came back with “No, he wants you to drop the Levo much more than that.” I reminded her that changing doses caused me great discomfort for 4-5 weeks and that I would lower it, but in smaller increments. She talked to him and came back with “OK, he’ll meet you halfway” and gave a dosage plan that was still much more than I wanted to change. So I agreed, and then met HIM halfway, I’m taking much less than I wanted to but still more than he wants me to.

I’m sure when I see him in 6 weeks he’ll yell at me for disobeying, but I will remind him that it is MY body and it’s ME that has to live with what happens to me during each dose change, thank him for his guidance, and assure him that we will get there, at a rate that makes ME the most comfortable. What I do NOT want to happen is to drop the med too much and then flip to hypo, and then have to start raising it again. I would rather keep lowering it in tiny increments until we find the sweet spot, ya know?

It’s been about 11 days since I lowered my dose and yes, I’m feeling it, and this time I’m being kind to myself by taking the occasional tranquilizer to help me get through my days. I hate doing that but have to remind myself it’s only temporary and I need to still function while we tweak these darned thyroid meds.

I now wait with fear to see what my labs will be – but this next time we have GOT to be closer to normal range. If not, it goes against everything scientific and medical fact and I will have to assume someone inserted another thyroid into me while I was sleeping!

We can and will beat this….. the only unknown is how long it will take. Good luck, and keep us posted.
Sue

[SueAndHerZoo]

in reply to: I lower my Levo and my TSH drops even MORE! #1182998

Wow, Kimberly… that thread (and the links) were really informative and helpful – thank you!

I already have osteopenia (the stage right before osteoporosis, I think?) and my GP is always yelling at me to take more Vitamin D and calcium, so if low TSH contributes to this problem I’m in big trouble.

I’ll drop my Levothyroxine a little more and see what happens in 6 weeks. I really could have understood if my TSH had stayed the same after the last reduction in Levo, but to have gotten even LOWER??????

Can’t wait to hear if my doc has any idea what might be going on.
Sue

[SueAndHerZoo]

in reply to: I lower my Levo and my TSH drops even MORE! #1182996

I have no idea why this happens. I don’t think my Graves can flare and affect my thyroid because I have no thyroid anymore! The last time this happened (we lowered my Levo and my TSH went down) we chalked it up to the fact that I had recently come off my colitis meds . . . figured maybe they had been interfering with the Levo. But this time nothing has changed except that I lowered my Levothyroxine a little more.

I’m expecting my endo to call me tomorrow and tell me to lower it some more – I saw the lab results online – haven’t talked to anyone at the doc’s office yet.

I know there’s a lot we have to deal with and learn to live with, but when the lab results show the opposite of what you expected, it throws you for a loop!
Sue

[SueAndHerZoo]

in reply to: Well, here goes! #1173706

Whoohooooo!!!!! So glad to hear that, and I can totally relate to everything you said. I had no idea how bad I was feeling all the time for all those years until just a few months ago. We are still lowering my Levothyroxine (I’m down to 96.5 mcg per day) and each time we reduce I do it VERY slowly because of the side effects and because I don’t want to go TOO low. I’ve been feeling FANTASTIC the past 7-10 days , told my husband I don’t know if I’ve EVER felt this good in my 57 years of life. Physically, mentally, emotionally…… and the anxiety is GONE.

I sleep well at night and have energy all day. I’m happy all the time and am so grateful for it – I definitely don’t take it for granted. I’m able to lose weight if I make the effort and I can go to the gym and work as hard as I desire – my body is keeping up with my head.

Amazing, and I, too, wish I could turn back the clock but it all happens how and when it’s supposed to, right?

Keep feeling great, and thanks for the update!
Sue

[SueAndHerZoo]

in reply to: Dual Diagnosis #1182823

Ugh, I’ve often wondered the same thing in the past year or two….. has my thyroid been the root cause of so many issues I’ve been dealing with for decades? I have had an irritable/spastic colon since I was a teenager (which has now turned into colitis) and I have had panic attacks and anxiety since I was about 15, too. Not much was known about panic attacks back then so I was pretty much alone with that and Graves was probably even less popular.

My GP noticed I had a goiter about 35 years ago, but every time we ran blood work or did thyroid scanning, it showed “within range”. But now I have to believe that there was something brewing even back then and I wonder if I could have been spared the last 40 years of hell (and Prozac).

Part of me gets really angry over “all the wasted time” but I guess I should just focus on being grateful that we FINALLY have found the answer for most of my health issues. Now I just have to live long enough to enjoy 40 years of GOOD health to counter the 40 years of undiagnosed issues.

Thanks for posting.
Sue

[SueAndHerZoo]

in reply to: What symptoms and indicators do you track at home #1182815

Great idea to track. I started a very detailed one the day I had my thyroid removed and EVERY DAY I would jot down the vitals, how I was feeling, what I was feeling, etc. I have gone back and referred to it many times both for myself and for others so I’m glad I did it.

What I did before my surgery (and still do now) is get a copy of my bloodwork at each doctor’s visit, and I jot down on the back how I’m feeling at that particular level, what my BP and pulse are, where my weight is, energy, etc. I have all my blood labs (and notes about physical and mental symptoms) from several years ago. Priceless. I think tracking my emotional status was as important as the physical symptoms.
Sue

[SueAndHerZoo]

in reply to: reacting to transition in dosage issues #1182798

Raspberry wrote:

Hi Sue, has your endo ever explained anything about why the adjustment is so hard??? Mine just says I’m sensitive but I wish I could do more about it! Great advice on taking nothing personally during the adjustment time – I’ve gotten myself into trouble with that one cause it all seems so real

No, he doesn’t even officially acknowledge that I’m feeling effects of the dose changes. He kind of shrugs it off, doesn’t think such a minor change in a drug with such a long half-life could do that, so I don’t even talk about it anymore. “I” certainly know it’s real, and lots of others here have verified that it IS possible to feel it.

I must be pretty darned sensitive to Levo because ever since my TT last July, we have kept lowering the dose and I think we’ll be doing that quite a bit longer till I get to a good point. M TSH was all the way up to .04 last week! LOL
Sue

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