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Very low TSH on Levothyroxine.
So I've now been on 88 mcg of Levothyroxine for almost 8 weeks. I went through a rough time of subacute thyroiditis starting this spring and was first very hyper then very hypo.
My blood draw just before starting the Levo was:
TSH: 18.70 (0.47-4.68)
Free T4:0.39 (0.78-2.19)
Total T3: 0.94 (0.97-1.69)
I just checked my levels again, first time after starting Levo:
TSH: 0.10
Free T4: 1.31
Total T3: 1.40
I know testing the Total T3 isn't ideal, but my endo don't want to test the Free and unbound T3.
I'm going in next week to see her again and to go over these results. I do feel way better than when I was too low. My under eye bags have gotten smaller and I do have more energy. But now I'm worried she will think my TSH is too low and lower my Levo dose. But that will also lower my thyroid hormones and I'm scared half to death about feeling aweful again.
I've read that a too low TSH can cause bone loss. And a too high TSH can cause thyroid cell growth, one of the reasons they keep it low on purpose in thyroid cancer patients.
But what to do in a case like mine? I don't want my T4 and T3 to get any lower. In fact, I think the T3 could go higher but it's hard to tell for sure without the FT3. I can't say that I do feel "optimal" yet but that might also be because I'm still recovering from this illness?
Will a constant too low TSH make the pituitary gland "shrivel up" and maybe cause other diseases like Cushings? I definitely don't want that. But I also don't want to compromise and have to live with too little thyroid hormones.
I do know that at one point I will be taken off the Levo completely to see how my own thyroid function will do, there's still a chance it will repair itself after the thyroiditis. The thing is though, I've had all the hypo symptoms before the inflammation for about a year before it started.
I've tested my TPOab (within the range) but no other antibodies and I don't think my endo plan to do so either in the future. Autoimmune disease runs in my family, my sister for example have Graves disease.
Thank you for reading!
My blood draw just before starting the Levo was:
TSH: 18.70 (0.47-4.68)
Free T4:0.39 (0.78-2.19)
Total T3: 0.94 (0.97-1.69)
I just checked my levels again, first time after starting Levo:
TSH: 0.10
Free T4: 1.31
Total T3: 1.40
I know testing the Total T3 isn't ideal, but my endo don't want to test the Free and unbound T3.
I'm going in next week to see her again and to go over these results. I do feel way better than when I was too low. My under eye bags have gotten smaller and I do have more energy. But now I'm worried she will think my TSH is too low and lower my Levo dose. But that will also lower my thyroid hormones and I'm scared half to death about feeling aweful again.
I've read that a too low TSH can cause bone loss. And a too high TSH can cause thyroid cell growth, one of the reasons they keep it low on purpose in thyroid cancer patients.
But what to do in a case like mine? I don't want my T4 and T3 to get any lower. In fact, I think the T3 could go higher but it's hard to tell for sure without the FT3. I can't say that I do feel "optimal" yet but that might also be because I'm still recovering from this illness?
Will a constant too low TSH make the pituitary gland "shrivel up" and maybe cause other diseases like Cushings? I definitely don't want that. But I also don't want to compromise and have to live with too little thyroid hormones.
I do know that at one point I will be taken off the Levo completely to see how my own thyroid function will do, there's still a chance it will repair itself after the thyroiditis. The thing is though, I've had all the hypo symptoms before the inflammation for about a year before it started.
I've tested my TPOab (within the range) but no other antibodies and I don't think my endo plan to do so either in the future. Autoimmune disease runs in my family, my sister for example have Graves disease.
Thank you for reading!
Thank you Barb, and yes, I'll let you know how my appointment went. I'm really exited! :)
COMMUNITY LEADER
Don't get too set on 18 months for the SAT, as it does often become permanent, sometimes, but I agree that you have to, at least be on med until it does pass, if it's going to as you can't sit around like a zombie just because the doctor doesn't want to give med.
I'm sorry to hear that you've had to cash in on your 401K, but at least you've had that option and at some point, we hope you'll still have Social Security and Medicare to fall back on, when you get older.
I do wish you the best of luck with the women's clinic and the NP. If they have a good reputation, I'm sure they're going to be good for you. Your appointment is only a week away, so that's not long to wait. Make sure you let us know how the appointment goes and whether or not the clinic is somewhere you feel you'll be comfortable staying for treatment.
I'm sorry to hear that you've had to cash in on your 401K, but at least you've had that option and at some point, we hope you'll still have Social Security and Medicare to fall back on, when you get older.
I do wish you the best of luck with the women's clinic and the NP. If they have a good reputation, I'm sure they're going to be good for you. Your appointment is only a week away, so that's not long to wait. Make sure you let us know how the appointment goes and whether or not the clinic is somewhere you feel you'll be comfortable staying for treatment.
Thank you :)
i did find the perfect obgyn that deals with menopause and thyroid but unfortunately he didnt take Medicaid. That's when I was directed to this Women's a Clinic, they're all in the same network. And they told me these NPs are wonderful and that I won't be disappointed.
Yes, it's this month, December. So it's coming up fast.
And yes, my endo don't want me to be on Levo at all. I just wonder how long she'll let me have very low numbers before she makes the assumption my thyroid is permanently damaged.
I'm willing to go off all meds but not until about 18 months have passed, that's how long this SAT lasts, sometimes longer. I've only had it since April so I'm nowhere near that.
I had to "beg" for meds back in September when I was really sick and every test came back low. So she was probably never planning on giving me meds, ever. I wonder if she treats her diabetic patients the same?
My plans are to become energetic, strong and get my mental drive back so I can start working and get a good health insurance. I don't want to have to be sick for a year or two more just to prove a point. I can't stand it, nor can I afford it. I've been cashing in my 401K so far just to get by, not really what I planned for, but at least I was lucky having that option. But now I probably have to work until the day I die, but I don't mind as long as I'm healthy and happy. Never, ever do I want to be forced sitting on my couch again staring at my walls! Yuck!!
I'm not sure how a NP operate in my state but even if they'll have to report to a physician at some point I just have the feeling they'll be great patient advocates and really help me get the treatments I need. :)
i did find the perfect obgyn that deals with menopause and thyroid but unfortunately he didnt take Medicaid. That's when I was directed to this Women's a Clinic, they're all in the same network. And they told me these NPs are wonderful and that I won't be disappointed.
Yes, it's this month, December. So it's coming up fast.
And yes, my endo don't want me to be on Levo at all. I just wonder how long she'll let me have very low numbers before she makes the assumption my thyroid is permanently damaged.
I'm willing to go off all meds but not until about 18 months have passed, that's how long this SAT lasts, sometimes longer. I've only had it since April so I'm nowhere near that.
I had to "beg" for meds back in September when I was really sick and every test came back low. So she was probably never planning on giving me meds, ever. I wonder if she treats her diabetic patients the same?
My plans are to become energetic, strong and get my mental drive back so I can start working and get a good health insurance. I don't want to have to be sick for a year or two more just to prove a point. I can't stand it, nor can I afford it. I've been cashing in my 401K so far just to get by, not really what I planned for, but at least I was lucky having that option. But now I probably have to work until the day I die, but I don't mind as long as I'm healthy and happy. Never, ever do I want to be forced sitting on my couch again staring at my walls! Yuck!!
I'm not sure how a NP operate in my state but even if they'll have to report to a physician at some point I just have the feeling they'll be great patient advocates and really help me get the treatments I need. :)
COMMUNITY LEADER
Yes, your FT4 is way too low in the range and I agree that you need an increase not a decrease... your endo must be batty to be thinking you could cut your dose in half and still feel human.
It sounds like your current endo is only concerned about getting your levels into range, then pulling the med and trying to make your thyroid go it alone and that won't work... I don't blame you for going elsewhere.
The women's clinic you're going to, sounds interesting. I don't know about your state, but I think in most states, NP's have to report to doctors at some level. That said, many NP's are more compassionate and ready to listen than doctors, but then I've had some that were not so good, as well. It just depends on the person. The bottom line is all about getting someone who is knowledgeable about thyroid and willing to work with you.
Your appointment will be on the 22nd of Dec? I certainly hope they will be willing to order the Free T3 test, along with Free T3 and TSH tests, so you "really" know what's going on. Wishing you luck and hope to hear all about it, along with the new labs.
It sounds like your current endo is only concerned about getting your levels into range, then pulling the med and trying to make your thyroid go it alone and that won't work... I don't blame you for going elsewhere.
The women's clinic you're going to, sounds interesting. I don't know about your state, but I think in most states, NP's have to report to doctors at some level. That said, many NP's are more compassionate and ready to listen than doctors, but then I've had some that were not so good, as well. It just depends on the person. The bottom line is all about getting someone who is knowledgeable about thyroid and willing to work with you.
Your appointment will be on the 22nd of Dec? I certainly hope they will be willing to order the Free T3 test, along with Free T3 and TSH tests, so you "really" know what's going on. Wishing you luck and hope to hear all about it, along with the new labs.
Thank you Barb for answering.
The ref range for FT4 is 0,78 - 2,19
The MA told me the endo had said that my levels were perfect now and that I now should cut my 75 mcg Levo in half!!!
I told the MA that no, I'm not going to do that. Last time she lowered my dose I got really sick within days. And Christmas is coming up, I can't be sick and not be able to move from my couch. She said she would tell the doctor that and I still haven't heard anything back. But no, I'm absolutely not lowering my dose. I want to raise it!
I now have an appointment for a woman's clinic that deals with hormones and thyroid, it's run by nurse practitioners. I've heard they're really good so I will take my business there. It's obvious I'll stay sick if I'm staying with this current endo. She's not interested in getting me to my personal optimal levels, in fact, she wants to ruin it all for me. Who goes and lowers the meds when they're finally getting better? Unbelievable, I'm so disappointed. And angry.
I'm going to this new clinic the 22nd and I'm very hopeful. I've heard NPs are more helpful than many doctors, not so full of themselves and have more understanding of the patients needs and wellbeing.
The ref range for FT4 is 0,78 - 2,19
The MA told me the endo had said that my levels were perfect now and that I now should cut my 75 mcg Levo in half!!!
I told the MA that no, I'm not going to do that. Last time she lowered my dose I got really sick within days. And Christmas is coming up, I can't be sick and not be able to move from my couch. She said she would tell the doctor that and I still haven't heard anything back. But no, I'm absolutely not lowering my dose. I want to raise it!
I now have an appointment for a woman's clinic that deals with hormones and thyroid, it's run by nurse practitioners. I've heard they're really good so I will take my business there. It's obvious I'll stay sick if I'm staying with this current endo. She's not interested in getting me to my personal optimal levels, in fact, she wants to ruin it all for me. Who goes and lowers the meds when they're finally getting better? Unbelievable, I'm so disappointed. And angry.
I'm going to this new clinic the 22nd and I'm very hopeful. I've heard NPs are more helpful than many doctors, not so full of themselves and have more understanding of the patients needs and wellbeing.
COMMUNITY LEADER
Menopause isn't the end of the world and you won't automatically get osteoporosis just because you're through menopause. I've through menopause for 19 yrs and I don't have osteoporosis, nor do I take HRT.
It's probable that your hysterectomy did kick you into menopause, in spite of what your surgeon told you; one ovary usually can't keep up, especially, when you're about to start peri-menopause anyway.
Anyway, I was diagnosed, some years ago, with osteopenia, which the forerunner to osteoporosis and at that time, I began a regimen of calcium, magnesium, vitamin D and exercise. I've since rebuilt most of the bone I'd lost, so to answer your question - yes, exercise IS helpful, when there's no estrogen left in the body. And no, you're not doomed to have that flabby body for the rest of the of your life... Yes, there IS life after menopause.. It actually can get better, because you no longer have a lot of the worries you had before.
All of that said, I see your latest TSH and FT4... your TSH is good , but your FT4 looks way too low, but we need the reference range. Looks like you could stand to increase back to the 88 mcg again.
It's probable that your hysterectomy did kick you into menopause, in spite of what your surgeon told you; one ovary usually can't keep up, especially, when you're about to start peri-menopause anyway.
Anyway, I was diagnosed, some years ago, with osteopenia, which the forerunner to osteoporosis and at that time, I began a regimen of calcium, magnesium, vitamin D and exercise. I've since rebuilt most of the bone I'd lost, so to answer your question - yes, exercise IS helpful, when there's no estrogen left in the body. And no, you're not doomed to have that flabby body for the rest of the of your life... Yes, there IS life after menopause.. It actually can get better, because you no longer have a lot of the worries you had before.
All of that said, I see your latest TSH and FT4... your TSH is good , but your FT4 looks way too low, but we need the reference range. Looks like you could stand to increase back to the 88 mcg again.
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