[SueAndHerZoo]

#1060504

I give up. As you know I had a TT July of 2013 (and still haven’t regretted it for a second) and since then we have been slowly but consistently lowering my original daily dose of Levothyroxine because no matter what we do, my TSH stays low. I was FINALLY up to .04 about 6 weeks ago (yes, that was UP!) and made another small decrease in my meds so that I could see another climb during this blood test. WRONG. Just got my results and my TSH is back down to .02 (low end of normal is .40) My Free T4 is in the high normal range and came down slightly from last test but the TSH went DOWN again!?!?!?!?

I really hesitate to lower the Levo again because, as a lot of you know, I deal with about 4 weeks of side effects every time I change my dose, but I know I have to keep going down until my TSH comes up.

Part of me says “To hell with it, I’m quite functional at this level – so what if my TSH is barely existent?” but I imagine there are long-term health effects to being that low, and today I got hit hard with anxiety again, so the battle continues.

But can I simply ask…. WTF?!?!?! (Sorry, this was mostly a rant, but if anyone has ideas as to why lowering my Levo would lower my TSH I’d love to hear them.)
Sue

[Tkiv]

#1182995

Hi Sue,

Oh man, I feel that I may be going through something very similar. I too have been battling a low TSH. Mine was .011 just 7 weeks ago. It hovered between .015 -.011 for the last year. 7 weeks ago we lowered my dose of synthroid from 88mcg to 75 mcg. I felt terrible for the first two weeks. Headaches were the worst. But gradually I began to feel better than before the dose change. I am still having symptoms though (heat intolerance, anxiety).

I see my doc next week and will find out what my TSH is now. My FT3/4 have both been in the normal range, but at this point I still feel unwell. The anxiety is awful and I’m very concerned about my bones. I had RAI in 2011.

I don’t understand this either Sue. Does Graves just flare up?

Hoping to find out if my levels dropped and what to do next week and will be back.

Take Care,
Terry

[SueAndHerZoo]

#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

[Kimberly]

#1182997

Hi Sue – Sorry for the continued frustrations, but glad to hear that you have no regrets about your TT!

Hopefully, Shirley will jump in here, as she has had experience with persistently low TSH. There are also a couple of comments on this thread as to why docs are so eager to get below normal TSH back in the normal range if possible:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window)

http://gdatf.org/forum/topic/44029/

Take care – and keep us posted!

[SueAndHerZoo]

#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

[sarawebberdurnell]

#1182999

I don’t have any answers, just to say I hope you can get it figured out and on the right dose. It’s nice to know that others are battling the same dosing issues though. After my TT on 4/2014, I have been bouncing back and forth between hypo and hyper the past few months. I certainly don’t regret the TT, as my symptoms don’t even compare to before surgery, but it’s very frustrating to have the joint pain and lack of energy, then bounce to rapid pulse, high blood pressure, and face breakouts, then back again even adding headaches this time. I don’t understand how the numbers game works on the labs. In June T4 was 1.18, TSH was 3.76 and I was hypo. In Aug, T4 1.53 and TSH 1.51 and I was hyper. Four weeks later, being more symptomatic T4 1.28 and TSH 2.39, which both apparently are in the normal range. I wish I had a better understanding of what means what.

I know your post was a week or so ago, so I hope you have gotten some answers. Hang in there…the light comes eventually

Sara

[SueAndHerZoo]

#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

[snelsen]

#1183001

Wow, Sue. This is so very, very weird.
I have a suppressed TSH, regardless of what I do. UNLESS I lower it to 88mcg, then I have gastroparesis, cannot eat, flunked the stomach emptying all day test. We are trying to lower it again, cause I DO have osteoporosis (and got it in my late 50’s,) and I also developed a fib, which is a risk when hyPER> but, I am NOT hyper, if anything absolutely not one symptom of hyper. I have forgotten the T3 and T4, will look up, probably not post until Wednesday. Tomorrow is crazy. On one of my botched lower eyelid surgeries, my lower eyelid is turned IN so eyelashes grow into my eye, is painful, hurts my corner, so i have them yanked out..tomorrow at 0900!

I think you did a good job by calling the office, then doing some moderate meeting halfway! The other thing I have never done before, is to take different mcg on different days. Happy to do that, i set up meds ahead of time. right now, 112 mcg TWTh and 100mcg the other days…..
Shirley

[SueAndHerZoo]

#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

[sarawebberdurnell]

#1183003

Please take comfort in my discomfort It is good to know we aren’t alone or crazy. I wouldn’t change my decision of the TT and I did know finding the right dose could be tricky. I haven’t been battling it as long as you, but I do know how extremely frustrating it can be. It would be nice to have a day without symptoms from one side or the other, and hopefully that day will come sooner rather than later. It amazes me that such a little part of our body can make such a MAJOR difference in how everything else functions. One day we can look back at this and have the peace of mind knowing that it was a great decision and we can bounce back from all the craziness of it.

Stay tough and take it easy on yourself. I get really hard on myself and push, when I should be reminding myself that this is the right path and I just need to be patient, that it will all work out. Though it is hard when I don’t feel quite right.

Sara

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