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Confused about hypothyroid treatment
Hi All,
I have read the boards frequently and am now seeking some assistance from those of you who seem to be much more knowledgeable than me:) I am sorry this is so long!
I have been struggling with hypo for the past three + years, constantly changing medication dosages and not fully finding relief from my symptoms. Last fall I switched to an expensive endo who seemed to know what she was doing (yay!). She added time release T3 to my dessicated T4/T3 compounded medication regimen, and I was feeling better. As of February 2013, I was taking 120 mg T4/T3 (pharmacist compounded) and 30 mcg T3. I felt pretty good, though I was still having some lingering issues with hair loss, cold extremities, occasional joint aches and pains, etc.
At the end of April 2013, I switched birth control pills and neglected to inform my Endo. About two weeks later, I started having BAD heart palpitations, chest pain, shortness of breath, and a high pulse. I ended up in the ER thinking I was having a heart attack (for reference, I am a 37 year old, fit, female). I had labs taken on May 6 for a regular appointment that was scheduled mid-May that showed the following:
TSH - .050 L (0.450 - 4.500)
Free T3 - 3.8 (2.2 - 4.4)
Free T4 - .98 (.82 - 1.77)
Reverse T3 - 15 (9.2 - 24.1)
My Endo was happy with these numbers. I reported the heart problems to her May 13 (spent Mother's Day in ER). She told me to stay the course with my meds and that my numbers looked great (I neglected to mention the switch in BC pills). The ER doctor had suggested that the thyroid meds were causing the problem and that I needed to follow up also with a cardiologist. Later that week I was not feeling any better and finally remembered to report the change in pills to my Endo (thinking that could be the issue that suddenly caused me to be overmedicated). She sent me to the lab on May 17, and these were my numbers:
TSH - .046
Free T3 - 3.2
Free T4 - .91
At that point, I backed off the T3 and cut my dose of T4 to 96 mg.
I recently saw a new PCP who is going to take over my thyroid care (the endo does not accept insurance and is in another state - she is costing me a small fortune). She suggested I was having a Hashi's episode brought on by the change in BC pill. I have tested negative twice for Hashi's to-date. At the advice of my Endo, I continued taking the 96 mg of T4/T3 and added back 10 mcg of T3 as of last Friday, May 31. The PCP wants me to switch to NatureThroid in alternating doses of 96mg and 65 mg along with T3 of 20 mcg. I have been taking the 96 mg for a couple of weeks now and the 10 mcg of T3 only for one, so I thought it was best to wait until my next set of labs before really making that switch (if necessary). Those will be mid-July.
To complicate matters, I accidently took an extra dose of T4/T3 on Tuesday and am now (Friday) having palps again. I am unsure of what to do. I am not sure what the half life of T4 is and whether the excess will clear my system soon, and I should wait it out, or if I should just not take my med tomorrow to clear out the excess sooner!?!? I am wondering if, in fact, I may still be over medicated (even though the labs do not indicate that) at the lower dosages (and the palps are unrelated to the extra dose)? Additionally, would a switch in bc pills cause this kind of issue (I switched from a higher estrogen pill to a lower dosage one), and why wouldn't the labs reflect that I was over medicated?
It's all so confusing to me, and I am unsure how to make heads or tails of what happened. I have been on this bc pill before but switched because my doctor thought it might be contributing to my hair loss (it wasn't). When I was on this pill before, I was taking 82.25 mcg of pharmacist compounded T4/T3 and no additional T3 but was still having lingering symptoms (my doctor at that time was not testing Free T3 or Free T4, only TSH and Total T4). I switched to the higher estrogen pill and consequently needed more thyroid meds (presumably due to the estrogen and its binding to thyroid hormone), ending up at the most recent dose of 120 mg T4/T3 and 30 mcg T3 from the expensive endocrinologist.
My new PCP seems knowledgeable, and I thought I was too, but I don't know where to go from here. I am so frustrated, I started crying at the PCP's office, and I continue to lose hair and feel fatigued . If anyone has insight, I'd LOVE to hear it:) Thanks for bearing with me!
I have read the boards frequently and am now seeking some assistance from those of you who seem to be much more knowledgeable than me:) I am sorry this is so long!
I have been struggling with hypo for the past three + years, constantly changing medication dosages and not fully finding relief from my symptoms. Last fall I switched to an expensive endo who seemed to know what she was doing (yay!). She added time release T3 to my dessicated T4/T3 compounded medication regimen, and I was feeling better. As of February 2013, I was taking 120 mg T4/T3 (pharmacist compounded) and 30 mcg T3. I felt pretty good, though I was still having some lingering issues with hair loss, cold extremities, occasional joint aches and pains, etc.
At the end of April 2013, I switched birth control pills and neglected to inform my Endo. About two weeks later, I started having BAD heart palpitations, chest pain, shortness of breath, and a high pulse. I ended up in the ER thinking I was having a heart attack (for reference, I am a 37 year old, fit, female). I had labs taken on May 6 for a regular appointment that was scheduled mid-May that showed the following:
TSH - .050 L (0.450 - 4.500)
Free T3 - 3.8 (2.2 - 4.4)
Free T4 - .98 (.82 - 1.77)
Reverse T3 - 15 (9.2 - 24.1)
My Endo was happy with these numbers. I reported the heart problems to her May 13 (spent Mother's Day in ER). She told me to stay the course with my meds and that my numbers looked great (I neglected to mention the switch in BC pills). The ER doctor had suggested that the thyroid meds were causing the problem and that I needed to follow up also with a cardiologist. Later that week I was not feeling any better and finally remembered to report the change in pills to my Endo (thinking that could be the issue that suddenly caused me to be overmedicated). She sent me to the lab on May 17, and these were my numbers:
TSH - .046
Free T3 - 3.2
Free T4 - .91
At that point, I backed off the T3 and cut my dose of T4 to 96 mg.
I recently saw a new PCP who is going to take over my thyroid care (the endo does not accept insurance and is in another state - she is costing me a small fortune). She suggested I was having a Hashi's episode brought on by the change in BC pill. I have tested negative twice for Hashi's to-date. At the advice of my Endo, I continued taking the 96 mg of T4/T3 and added back 10 mcg of T3 as of last Friday, May 31. The PCP wants me to switch to NatureThroid in alternating doses of 96mg and 65 mg along with T3 of 20 mcg. I have been taking the 96 mg for a couple of weeks now and the 10 mcg of T3 only for one, so I thought it was best to wait until my next set of labs before really making that switch (if necessary). Those will be mid-July.
To complicate matters, I accidently took an extra dose of T4/T3 on Tuesday and am now (Friday) having palps again. I am unsure of what to do. I am not sure what the half life of T4 is and whether the excess will clear my system soon, and I should wait it out, or if I should just not take my med tomorrow to clear out the excess sooner!?!? I am wondering if, in fact, I may still be over medicated (even though the labs do not indicate that) at the lower dosages (and the palps are unrelated to the extra dose)? Additionally, would a switch in bc pills cause this kind of issue (I switched from a higher estrogen pill to a lower dosage one), and why wouldn't the labs reflect that I was over medicated?
It's all so confusing to me, and I am unsure how to make heads or tails of what happened. I have been on this bc pill before but switched because my doctor thought it might be contributing to my hair loss (it wasn't). When I was on this pill before, I was taking 82.25 mcg of pharmacist compounded T4/T3 and no additional T3 but was still having lingering symptoms (my doctor at that time was not testing Free T3 or Free T4, only TSH and Total T4). I switched to the higher estrogen pill and consequently needed more thyroid meds (presumably due to the estrogen and its binding to thyroid hormone), ending up at the most recent dose of 120 mg T4/T3 and 30 mcg T3 from the expensive endocrinologist.
My new PCP seems knowledgeable, and I thought I was too, but I don't know where to go from here. I am so frustrated, I started crying at the PCP's office, and I continue to lose hair and feel fatigued . If anyone has insight, I'd LOVE to hear it:) Thanks for bearing with me!
No, it doesn't take 4-6 weeks to see ANY changes in blood levels when changing doses. it takes 4-6 weeks for the T4 portion to reach its FULL POTENTIAL in your blood. Levels start to change immediately and will keep changing for 4-6 weeks, after which no further change would be expected from that dose. Labs will reflect overmedication at whatever point in that 4-6 weeks that your levels get too high. If you were tested immediately after the two weeks of overmedication, your labs would reflect that.
Because of the very long half life of T4, some of the meds you took 4-6 weeks ago are still circulating in your system and still affecting your FT4 level.
Because of the very long half life of T4, some of the meds you took 4-6 weeks ago are still circulating in your system and still affecting your FT4 level.
Hi Goolarra - Just an update. I think that double dose I accidentally took last Tuesday DID affect me. I am pretty sensitive to medication. I felt crummy Thursday, Friday and Saturday (felt a few palps and slight increase in heart rate - minor, really) but am fine today.
I think I will stick with the 96 mcg T4/T3 dose and the 10 mcg until my next set of labs. I have some 20 mcg T3 that I can use if I start to feel tired. I usually know pretty quickly if I have too much T3 (I feel shaky inside like I've had too much caffeine).
I'll let you know what comes of all this. I am hoping I don't have Hashi's, but if I did, at least I'd know that is the cause of my hypo and it'll just take a little longer for me to find my happy place with the meds (although three years - really?). Sigh.
Thanks so much for your insight, I appreciate it!
BTW - I suspect labs wouldn't reflect over medication unless I was continuously over medicated for weeks (I maybe had two much med for 2 weeks tops). Since it takes 4-6 weeks to see any changes in blood levels when changing doses, I'd expect that blood tests would not show me to be hyper unless I was continuously over medicated for 4-6 weeks. Just my guess. Based on symptoms alone, I can determine I was over medicated, we just don't know if the drop in estrogen caused it or some flare up of Hashi's, which we don't know I have.
Thanks for letting me bounce all these ideas off you:) It feels helpful!
I think I will stick with the 96 mcg T4/T3 dose and the 10 mcg until my next set of labs. I have some 20 mcg T3 that I can use if I start to feel tired. I usually know pretty quickly if I have too much T3 (I feel shaky inside like I've had too much caffeine).
I'll let you know what comes of all this. I am hoping I don't have Hashi's, but if I did, at least I'd know that is the cause of my hypo and it'll just take a little longer for me to find my happy place with the meds (although three years - really?). Sigh.
Thanks so much for your insight, I appreciate it!
BTW - I suspect labs wouldn't reflect over medication unless I was continuously over medicated for weeks (I maybe had two much med for 2 weeks tops). Since it takes 4-6 weeks to see any changes in blood levels when changing doses, I'd expect that blood tests would not show me to be hyper unless I was continuously over medicated for 4-6 weeks. Just my guess. Based on symptoms alone, I can determine I was over medicated, we just don't know if the drop in estrogen caused it or some flare up of Hashi's, which we don't know I have.
Thanks for letting me bounce all these ideas off you:) It feels helpful!
No, your labs really don't reflect how you're feeling. The latest labs from 5/17 show both FT3 and FT4 well below the target levels. In the 5/6 labs, your FT3 was into the top third of the range, but it was only a tad higher than your February labs.
You can have Hashi's and test negative for antibodies. An FNA can confirm. However, if you were having a "Hashi episode", we'd expect to see that reflected in your labs, too, and it's not.
"Could it just be that I am making enough T3 now and don't need the extra 10mcg?" That should be reflected in higher FT3 levels, and it's not.
You are taking quite a bit of T3 and were taking even more until you cut back. Of course, you have changed quite a few things in the past month, so FT3 and FT4 probably both need to stabilize for a while.
If your symptoms aren't too intolerable, I think your idea of waiting until your next labs and letting everything settle might be a good one. It sounds like you'll be dropping your BC neds entirely at some point, and that could further change your thyroid meds requirements.
The last time you changed your T4 intake was 5/17, correct? If so, you could have labs as early as 6/14, which will be enough time for your FT4 to stabilize on the new dose.
You can have Hashi's and test negative for antibodies. An FNA can confirm. However, if you were having a "Hashi episode", we'd expect to see that reflected in your labs, too, and it's not.
"Could it just be that I am making enough T3 now and don't need the extra 10mcg?" That should be reflected in higher FT3 levels, and it's not.
You are taking quite a bit of T3 and were taking even more until you cut back. Of course, you have changed quite a few things in the past month, so FT3 and FT4 probably both need to stabilize for a while.
If your symptoms aren't too intolerable, I think your idea of waiting until your next labs and letting everything settle might be a good one. It sounds like you'll be dropping your BC neds entirely at some point, and that could further change your thyroid meds requirements.
The last time you changed your T4 intake was 5/17, correct? If so, you could have labs as early as 6/14, which will be enough time for your FT4 to stabilize on the new dose.
I take the meds at 630am every am. I don't split the dose at all, since they are both time released. I never take the meds before a blood draw (I wait until after to take them). Does the blood even reflect what I am feeling exactly at that moment?
Could I really be Hashi's and be having some kind of uptick in activity from my thyroid? The medicine has to be causing my symptoms because whenever I back off the dose, I feel better within a few days! The PCP told me that I might be getting overloaded, which is why she thought the alternating doses would be keep that from happening. I am starting to wonder. Could it just be that I am making enough T3 now and don't need the extra 10mcg? So odd. I am not doing anything else differently that could be causing the over medication symptoms anyway.
I am currently taking 96mcg t4/t3 and 10 mcg. Have been taking that for a week. Prior to that I was taking only the 96mcg t4/t3 for a week after the episode subsided. I am wondering if its just the t3 causing the problem...
Could I really be Hashi's and be having some kind of uptick in activity from my thyroid? The medicine has to be causing my symptoms because whenever I back off the dose, I feel better within a few days! The PCP told me that I might be getting overloaded, which is why she thought the alternating doses would be keep that from happening. I am starting to wonder. Could it just be that I am making enough T3 now and don't need the extra 10mcg? So odd. I am not doing anything else differently that could be causing the over medication symptoms anyway.
I am currently taking 96mcg t4/t3 and 10 mcg. Have been taking that for a week. Prior to that I was taking only the 96mcg t4/t3 for a week after the episode subsided. I am wondering if its just the t3 causing the problem...
Not a lot has changed. Before switching your BC meds, your FT3 was 3.7. It went to 3.8 and then down to 3.2 in the two labs you'd first posted. FT4 was 0.7 before switching and went to 0.98 and then 0.91. So, that's just a little higher. TSH is apparently suppressed, probably from the high doses of T3 you're taking, so it's hardly worth talking about, but it went from a "high" of 0.05 to a low of 0.46, basically no change.
It doesn't seem like anything in your labs has changed enough to be causing your symptoms.
Had you taken your meds before any of these lab draws?
How do you take your meds? Do you split into more than one partial dose? BTW, I don't think the extra dose you took has anything to do with your symptoms. You're on 96 mg of T3/T4, so you only got an extra 50 or so mcg of T4. Your T4 is low, anyway, so I doubt that's causeing this.
You're currently taking 96 mg T3/T4 plus 10 mcg T3, correct?
It doesn't seem like anything in your labs has changed enough to be causing your symptoms.
Had you taken your meds before any of these lab draws?
How do you take your meds? Do you split into more than one partial dose? BTW, I don't think the extra dose you took has anything to do with your symptoms. You're on 96 mg of T3/T4, so you only got an extra 50 or so mcg of T4. Your T4 is low, anyway, so I doubt that's causeing this.
You're currently taking 96 mg T3/T4 plus 10 mcg T3, correct?
Hi Goolarra,
Here are my labs from Jan 25, 2013:
TSH - .05
Free T3 - 3.7
Free T4 - .70
Here are my labs from Jan 25, 2013:
TSH - .05
Free T3 - 3.7
Free T4 - .70
Thanks so much! My husband is having a vasectomy this summer, so I will be discontinuing the bc pills sooner (I currently take Seasonique) rather than later. I had no idea that bc pills could actually cause hypothyroid issues until I confirmed it with my PCP yesterday (I had read it on the internet but wasn't sure that was the whole story). She said the inserts in the bc pill packets usually give a warning about thyroid issues, and she is always surprised that more doctors either don't know this or don't tell their patients. I was shaking my head!
I'm not sure about what birth control you were on, and I understand there are many different reasons people take it. For me, I took Loestrin, and at one point, Ortho-tri-cyclen. For about 3 years. I stopped taking it this February, and noticed several things I thought were caused by low thyroid were birth control side effects. I did a lot of research into birth control and the effect on mood and sex drive, and I was shocked my doctors had never informed me better before. My husband and I now use Natural Family Planning (calendar method and taking temperature). I do not say this to tell you to stop taking it if you need it, but after my experience I feel compelled to let other ladies know to not assume birth control is as safe as doctors want us to believe, and to know there are non-hormonal options if you are taking it to prevent pregnancy.
I sympathize with your medication issues. I don't have answers for you there, but I have been through it and know how agonizing it is. Hang in there <3
I sympathize with your medication issues. I don't have answers for you there, but I have been through it and know how agonizing it is. Hang in there <3
Hi Goolarra - I'll see if I can pull the labs from February and post. That'll be later when I get home today. I do know that the combination T4/T3 medicine my pharmacist makes is based on the formula for NatureThroid so that should be 9mcg T3 per about 38 mcg T4. Does that help?
There's a lot going on here to address all at once, so let me try to pick it apart a little, and if I miss something, you can ask again.
The very first thing I'd like to see is a set of labs from before you switched BC meds, when you were feeling relatively well (no cardio symptoms).
Do you know the exact T3 and T4 content in your compounded meds?
The very first thing I'd like to see is a set of labs from before you switched BC meds, when you were feeling relatively well (no cardio symptoms).
Do you know the exact T3 and T4 content in your compounded meds?
I don't have experience with the medicines you are taking, I take levothyroxine. I just wanted to say hello, welcome to this group and that I hope you get relief and answers you need. Good luck!
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