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Sensitivity to Synthroid
Hi,
I have had Hashimoto's for years and seem to be having a sudden sensitivity/intolerance to Synthroid. This developed since my hyperthyroid bout last spring and swing back to hypothyroidism. Every time I increase my dose, I experience horrible hyper symptoms including sleep difficulties, heart palpitations and tearfulness. However, the dilemma is that if I don't increase the dose, the hypothyroid symptoms persist. My TSH is slightly below 3 and the target is 1. Have other people experienced this? If so, how have you coped? Has anyone changed to another T4 and had less difficulty?
Thank you in advance. I have posted before and have received such wonderful support and information.
I have had Hashimoto's for years and seem to be having a sudden sensitivity/intolerance to Synthroid. This developed since my hyperthyroid bout last spring and swing back to hypothyroidism. Every time I increase my dose, I experience horrible hyper symptoms including sleep difficulties, heart palpitations and tearfulness. However, the dilemma is that if I don't increase the dose, the hypothyroid symptoms persist. My TSH is slightly below 3 and the target is 1. Have other people experienced this? If so, how have you coped? Has anyone changed to another T4 and had less difficulty?
Thank you in advance. I have posted before and have received such wonderful support and information.
I have always been hypersensitive to meds increases. What has your meds history been since going hyper, then hypo? How much did you decrease after going hyper? Have you, perhaps, increased your dose too rapidly?
Is your doctor testing FT3 and FT4 as well as TSH? The "frees" are much more important than TSH. Meds adjustments should be being made on the basis of FT3/4, not TSH.
There is no "one-size-fits-all" TSH. Many of us have to have TSH suppressed to the lower end of the range (or even below) to feel good, others would be very hyper with a TSH of 1.0. We are all very individual and have to find the levels at which we each are most comfortable. TSH is also a very poor indicator of thyroid function since it is a pituitary hormone and affected by many variables other than thyroid function.
The best way to cope with this is to check your FT3/4 levels to see what is actually going on with your thyroid hormones. Another thing to evaluate is whether your increases have been too rapid/large.
Is your doctor testing FT3 and FT4 as well as TSH? The "frees" are much more important than TSH. Meds adjustments should be being made on the basis of FT3/4, not TSH.
There is no "one-size-fits-all" TSH. Many of us have to have TSH suppressed to the lower end of the range (or even below) to feel good, others would be very hyper with a TSH of 1.0. We are all very individual and have to find the levels at which we each are most comfortable. TSH is also a very poor indicator of thyroid function since it is a pituitary hormone and affected by many variables other than thyroid function.
The best way to cope with this is to check your FT3/4 levels to see what is actually going on with your thyroid hormones. Another thing to evaluate is whether your increases have been too rapid/large.
Hi,
Thanks so much for your very helpful response. I was comfortably taking 125 mcg of Synthroid for many years for my Hashimoto's prior to the hyperthyroid bout. I had to cut my dose considerably and am now alternating between 75 and 88 mcg after very slowly increasing the dose. I'm recovering now from an intense hyperthyroid reaction to only a very tiny increase which was horrendous and totally impaired my quality of life. My endocrinologist only checks the TSH and FT4. I keep thinking about changing to another thyroid medication option or wonder if there could be anything else going on to cause such a reaction.
I appreciate your help.
Thanks so much for your very helpful response. I was comfortably taking 125 mcg of Synthroid for many years for my Hashimoto's prior to the hyperthyroid bout. I had to cut my dose considerably and am now alternating between 75 and 88 mcg after very slowly increasing the dose. I'm recovering now from an intense hyperthyroid reaction to only a very tiny increase which was horrendous and totally impaired my quality of life. My endocrinologist only checks the TSH and FT4. I keep thinking about changing to another thyroid medication option or wonder if there could be anything else going on to cause such a reaction.
I appreciate your help.
What was your FT4 and its range?
If you're feeling hyper and you've increased very slowly, then your dose is too high, regardless of where your levels are. Last spring, my endo was trying to "nudge me up" in the range. I went hyper on an increase from 75 to 81.5, which is the same as your alternation of 75/88. The whole thing was complicated by the fact that I have a pituitary issue that keeps my TSH high, and I seem to be one of those "odd" people comfortable very low in the range. What was your dose when you went hyper this time?
If you're feeling hyper and you've increased very slowly, then your dose is too high, regardless of where your levels are. Last spring, my endo was trying to "nudge me up" in the range. I went hyper on an increase from 75 to 81.5, which is the same as your alternation of 75/88. The whole thing was complicated by the fact that I have a pituitary issue that keeps my TSH high, and I seem to be one of those "odd" people comfortable very low in the range. What was your dose when you went hyper this time?
Thanks so much!!! Sorry to hear about your struggles. What type of pituitary issue do you have? Are you taking Levoxyl? My last Free T4 was .7 with a range of .6 to 1.2. I had inched up so incredibly slowly from 75 daily to 88 mcg once a week, then twice a week to 88 3x times a week on alternate weeks, etc. I started becoming hyper when I started taking 88 3X every week (with 75 on other days). I have tried to increase it before but couldn't due to hyperthyroid effects. I agree.... The levels do not really matter if you're feeling terrible. It's such a minute difference but it catapulted me into a hyperthyroid state which is unliveable. I'd rather be hypothyroid!
I appreciate your help.
I appreciate your help.
I have "pituitary resistance to thyroid hormone" (PRTH). Apparently, the pituitary converts T4 to T3 for its own use. It does this with the help of an enzyme called 5'-deiodinase. My pituitary is lacking in that enzyme, so its starved for T3 and "thinks" the rest of my body is, too (it's not...I'm in range on all labs, except TSH, and have been asymptomatic for a couple of years now). However, my TSH always comes in around 20 (no, I did not forget the decimal point!).
Yes, I take 75 mcg Levoxyl. However, at one time or another, I have been on Synthroid and generic, and I failed to see much difference in any of them. I had never gone hyper until Levoxyl, but I think that was coincidence since my dose was being raised at that point also.
You certainly did all the right things in terms of increasing slowly. It makes my progression look relatively fast (and, it wasn't). I know exactly what you mean...my trip into hyper land last year was not fun, and I agree, I would rather be hypo and just take a nap than hyper. It's frightening. I went over the edge on just 6.5 mcg more per day (it took about a week to ten days). My endo had wanted me to go right to 88 per day, and we had compromised on 81.5...thank goodness. When you went hyper, did your endo advise you to d/c all meds for a few days before resuming at a lower dose?
So, it seems that the most you ever took was 88 2x per week (75 other days) alternating with 88 3x per week. When you went to 88 3x per week every week, you went hyper. When you were at your highest dose before going hyper, did you still have hypo symptoms? Were you at that dose long enough for it to stabilize (4-6 weeks)? What dose were you on when your FT4 was 0.7? Sorry about all the questions, but I think this is really interesting.
Yes, I take 75 mcg Levoxyl. However, at one time or another, I have been on Synthroid and generic, and I failed to see much difference in any of them. I had never gone hyper until Levoxyl, but I think that was coincidence since my dose was being raised at that point also.
You certainly did all the right things in terms of increasing slowly. It makes my progression look relatively fast (and, it wasn't). I know exactly what you mean...my trip into hyper land last year was not fun, and I agree, I would rather be hypo and just take a nap than hyper. It's frightening. I went over the edge on just 6.5 mcg more per day (it took about a week to ten days). My endo had wanted me to go right to 88 per day, and we had compromised on 81.5...thank goodness. When you went hyper, did your endo advise you to d/c all meds for a few days before resuming at a lower dose?
So, it seems that the most you ever took was 88 2x per week (75 other days) alternating with 88 3x per week. When you went to 88 3x per week every week, you went hyper. When you were at your highest dose before going hyper, did you still have hypo symptoms? Were you at that dose long enough for it to stabilize (4-6 weeks)? What dose were you on when your FT4 was 0.7? Sorry about all the questions, but I think this is really interesting.
Thanks so much for your help and information. It's so easy to feel alone in the midst of a thyroid storm. Sorry you've had to struggle with this as well along with your PRTH.
Thank goodness you didn't increase your dose immediately to 88. I'm still in the midst of this horrendous hyper episode which involves sleep issues, emotional lability, and a rapid heartbeat and I was advised to lower the dose after another TSH yesterday. After my initial hyper episode, he wanted to increase my dose to 100 but I decided that I needed to increase it slowly. I long for hypo symptoms so I could nap and rest!
For many years, I was stabilized on 125 mcg until my thyroid sputtered into hyperthyroidism and then the wild swing back to hypothyroidism. I have no idea why I've developed this sudden intolerance or seeming toxicity. Since then, the highest dose I've been on was the 88 3 times a week which triggered the hyperthyroidism. Early last fall, I tried twice to increase it to the 88, but became hyper. At 3 times a week, I saw an improvement in that I no longer experienced extreme cold intolerance but then one week later, I became hyper. My FT4 was done last December when I started on the third 88 dose per week.
I really appreciate your input and support.
Thank goodness you didn't increase your dose immediately to 88. I'm still in the midst of this horrendous hyper episode which involves sleep issues, emotional lability, and a rapid heartbeat and I was advised to lower the dose after another TSH yesterday. After my initial hyper episode, he wanted to increase my dose to 100 but I decided that I needed to increase it slowly. I long for hypo symptoms so I could nap and rest!
For many years, I was stabilized on 125 mcg until my thyroid sputtered into hyperthyroidism and then the wild swing back to hypothyroidism. I have no idea why I've developed this sudden intolerance or seeming toxicity. Since then, the highest dose I've been on was the 88 3 times a week which triggered the hyperthyroidism. Early last fall, I tried twice to increase it to the 88, but became hyper. At 3 times a week, I saw an improvement in that I no longer experienced extreme cold intolerance but then one week later, I became hyper. My FT4 was done last December when I started on the third 88 dose per week.
I really appreciate your input and support.
Your FT4 was 0.7 just before you went hyper. It's really good that you had the bloodwork and know that since it defines the upper limit of your personal FT4 range. You must have been just about ready to go over the edge into hyper. Now, 0.7 is very low in the range, and it's a bit unusual (actually, I don't believe this, but the explanation is fairly complicated), but some of us are comfortable in the lower part of the range (myself included). Just to quantify...my FT4 is at 12% of range right now, and yours is at 16%, so you're just a bit higher in the range than me, and I'm asymptomatic. So, it IS possible.
My next question would have to be how long you were alternating 88 3x/88 2x before that 0.7 reading. Had the dose had the four to six weeks to stabilize in your system?
This is when doctors' reluctance to order FT3 makes me really angry. I would love to know what your FT3 was doing at the time. It can be such an important part of the puzzle when the rest is not quite making sense without it.
If your FT4 had had enough time to stabilize, my next question would be if your FT3 (I know you don't know what it was) had had time to "catch up". My experience is that once FT4 stabilizes, it can take a while longer until the conversion kicks in at full tilt, so FT3 continues to rise with stable FT4. FT3 can lag behind for a while, and therefore symptoms may persist after FT4 stabilizes and even after FT3 does, if the body needs time to heal.
Are you still taking 88 2x/88 3x? Do you have either hyper or hypo symptoms at the moment?
My next question would have to be how long you were alternating 88 3x/88 2x before that 0.7 reading. Had the dose had the four to six weeks to stabilize in your system?
This is when doctors' reluctance to order FT3 makes me really angry. I would love to know what your FT3 was doing at the time. It can be such an important part of the puzzle when the rest is not quite making sense without it.
If your FT4 had had enough time to stabilize, my next question would be if your FT3 (I know you don't know what it was) had had time to "catch up". My experience is that once FT4 stabilizes, it can take a while longer until the conversion kicks in at full tilt, so FT3 continues to rise with stable FT4. FT3 can lag behind for a while, and therefore symptoms may persist after FT4 stabilizes and even after FT3 does, if the body needs time to heal.
Are you still taking 88 2x/88 3x? Do you have either hyper or hypo symptoms at the moment?
Hi,
Again, thanks so much for your help, support, and time. I feel as if I'll never feel like my old self again. This has been the worst year of my life... healthwise.
At the moment, I'm having hyper symptoms and am waiting for the latest TSH results. In the interim, I've lowered the dose although I expect the TSH to not reflect the hyper symptoms as it seems that it's not an objective hyperthyroidism but an adverse, hyper-like response to the Synthroid.. I've asked for a a FT3 but was told it wouldn't be useful!! I can't decide whether to go down to 75 daily after struggling to get up to 88 three times a week or what to do. This is an unliveable state but then the hypo state wasn't very enjoyable either...
Strangely, the FT4 at .7 was a slight decrease of .1 from before (at .8) and was when I had increased to 3 times a week of 88 after alternating between 2 times a week of 88 and 3 times. I noticed the hyper symptoms starting after a glaring and sudden shift in my metabolism from extreme cold intolerance to feeling comfortable. My TSH actually increased last time after I increased my Synthroid.. which is odd.
Again, I appreciate all of your information and support.
Take care of yourself.
Again, thanks so much for your help, support, and time. I feel as if I'll never feel like my old self again. This has been the worst year of my life... healthwise.
At the moment, I'm having hyper symptoms and am waiting for the latest TSH results. In the interim, I've lowered the dose although I expect the TSH to not reflect the hyper symptoms as it seems that it's not an objective hyperthyroidism but an adverse, hyper-like response to the Synthroid.. I've asked for a a FT3 but was told it wouldn't be useful!! I can't decide whether to go down to 75 daily after struggling to get up to 88 three times a week or what to do. This is an unliveable state but then the hypo state wasn't very enjoyable either...
Strangely, the FT4 at .7 was a slight decrease of .1 from before (at .8) and was when I had increased to 3 times a week of 88 after alternating between 2 times a week of 88 and 3 times. I noticed the hyper symptoms starting after a glaring and sudden shift in my metabolism from extreme cold intolerance to feeling comfortable. My TSH actually increased last time after I increased my Synthroid.. which is odd.
Again, I appreciate all of your information and support.
Take care of yourself.
By "ojective hyperthyroidism" do you mean that your TSH is not below range and your FT4 is not above range? If so, please understand that it is not necessary for your labs to be out of range for you to be hyper (or hypo). All that is necessary is for labs to be outside YOUR personal reference range (which is going to be a lot narrower than the population range). Are they ordering FT4 along with TSH? FT3 is very useful, and very misunderstood by many, many doctors. I think you need to see what it's doing.
My TSH doesn't move a lot, but it's as apt to go up when my frees go up or I increase my dose as it is to behave properly.
Hopefully, your latest labwork will give you a better idea of how to adjust meds when it comes in. With hyper symptoms present, I think a slight decrease is in order. If you went back to 88 2x, do you think you'd start feeling hypo?
My TSH doesn't move a lot, but it's as apt to go up when my frees go up or I increase my dose as it is to behave properly.
Hopefully, your latest labwork will give you a better idea of how to adjust meds when it comes in. With hyper symptoms present, I think a slight decrease is in order. If you went back to 88 2x, do you think you'd start feeling hypo?
Hi,
Update: I just got my TSH back prior to lowering my dose (which included stopping for two days). My TSH is now 2.98, on the cusp of the upper limit of normal. Strangely, the TSH has been increasing despite my increase in Synthroid. This hyperthyroid bout has been intolerable in view of the heart palpitations, emotional lability, and insomnia. My endocrinologist recommended that I try a low dose of the Beta Blocker: Propranalol.
The only test that was done was a TSH.
This may be a worthwhile short term strategy to manage the hyper symptoms but I still don't feel as if this is a workable long term solution given my intolerance/sensitivity to Synthroid.
Thanks again for all of your support and help. Hope you're doing well.
Update: I just got my TSH back prior to lowering my dose (which included stopping for two days). My TSH is now 2.98, on the cusp of the upper limit of normal. Strangely, the TSH has been increasing despite my increase in Synthroid. This hyperthyroid bout has been intolerable in view of the heart palpitations, emotional lability, and insomnia. My endocrinologist recommended that I try a low dose of the Beta Blocker: Propranalol.
The only test that was done was a TSH.
This may be a worthwhile short term strategy to manage the hyper symptoms but I still don't feel as if this is a workable long term solution given my intolerance/sensitivity to Synthroid.
Thanks again for all of your support and help. Hope you're doing well.
I take a beta blocker, atenolol. It does help with the palpitations (tachycardia, in my case). I hate the idea of taking one thing to counter the side effects of the other, but I have a congenital heart defect that makes me prone to tachycardia, so I had no choice. The levo just wrought havoc with my tachy.
If I were you, I would really insist that your doctor order FT3 and FT4 (again). If you increase your Synthroid, and your TSH goes up, something else is going on. TSH is such a poor diagnostic since it can be affected by so many things, even the time of day the blood was drawn.
You might try switching to a different brand T4. Sometimes the fillers in one or the other give people problems (the hormone is the same). I doubt this would help since you were on Synthroid for so long before your symptoms developed.
Are you menopausal? Peri-menopausal?
If I were you, I would really insist that your doctor order FT3 and FT4 (again). If you increase your Synthroid, and your TSH goes up, something else is going on. TSH is such a poor diagnostic since it can be affected by so many things, even the time of day the blood was drawn.
You might try switching to a different brand T4. Sometimes the fillers in one or the other give people problems (the hormone is the same). I doubt this would help since you were on Synthroid for so long before your symptoms developed.
Are you menopausal? Peri-menopausal?
Hi,
Thanks again for your support. You have been extraordinarily helpful in the midst of this thyroid storm.
I totally understand. I also don't like the idea of taking one drug to counteract the adverse effects of another. I just started the Propranalol at the lowest possible dose. I'm sure it's too early to see any true effects as I'm still feeling hyper. Unfortunately, it takes such a long time to adapt to the lower dose of Synthroid. What is particularly strange is that the hyper effects are exacerbated by intense exercise.
I've been post-menopausal for years.
Take care.
Thanks again for your support. You have been extraordinarily helpful in the midst of this thyroid storm.
I totally understand. I also don't like the idea of taking one drug to counteract the adverse effects of another. I just started the Propranalol at the lowest possible dose. I'm sure it's too early to see any true effects as I'm still feeling hyper. Unfortunately, it takes such a long time to adapt to the lower dose of Synthroid. What is particularly strange is that the hyper effects are exacerbated by intense exercise.
I've been post-menopausal for years.
Take care.
I started atenolol at the lowest dose, too, but as I raised my levo dose, I had to go up a step in the BB, too. It takes a few days for the BBs to kick in, but it really happens pretty quickly (or it just seems that way to us hypos who are used to spending six weeks waiting for meds to kick in...it'a ll relative!).
It makes logical sense to me that the hyper symptoms would be exacerbated by intense exercise. Your HR and BP are probably a bit higher than usual, so when you add the demands of strenuous exercise to that, everything is going to be a bit worse. You might go a bit easy on yourself until things get closer to normal??? Your whole body is under more stress at the moment than it's used to. You don't want to push too hard.
Keep us posted on how it's going...
It makes logical sense to me that the hyper symptoms would be exacerbated by intense exercise. Your HR and BP are probably a bit higher than usual, so when you add the demands of strenuous exercise to that, everything is going to be a bit worse. You might go a bit easy on yourself until things get closer to normal??? Your whole body is under more stress at the moment than it's used to. You don't want to push too hard.
Keep us posted on how it's going...
Hi,
I can't thank you enough for being there. The worst symptom for me right now re: hyperthyroidism is the emotional lability. It's horrendous! Have you experienced this and, if so, did the Beta Blocker help?
Hope you're doing well.
I can't thank you enough for being there. The worst symptom for me right now re: hyperthyroidism is the emotional lability. It's horrendous! Have you experienced this and, if so, did the Beta Blocker help?
Hope you're doing well.
No, I haven't experienced the emotional lability with thyroid. I went through that for entirely different reasons when I was quite young and think I "taught" myself how to avoid it. We are sometimes our own worst enemies...I know I am, and I see it in my husband though I am powerless to convince him of that!. I still have to fight at times to keep it at bay, but I do most of the time, and when I don't, it's short-lived. No, the BBs are going to help with the heart issues...they basically block the adrenalin receptors in the heart, calming things down there. And if your heart feels better, so do you! BBs won't do a lot for the other symptoms of hyper. Have you considered skipping a day or two of thyroid meds to get back to un-hyper levels? You might ask your doctor about that...When I was overmedicated, my symptoms were increased HR, elevated BP, angina, "antsiness" (man, did my house get clean!), insomnia, heat intolerance (never before). We all react differently, and as I said, I have lots of experience with emotional instability, so kind of have that under control. Not feeling well upsets your emotional state...anything that makes you feel better helps that. Hang in there...there is light at the end of the tunnel.
Hi,
Thanks again for the support. Often it feels as if I'll never feel like my old self again. I've been struggling with this lack of well-being for about a year now.
I did stop taking the Synthroid for two days last week and dropped down to 75 mcg. as I couldn't tolerate anything more. I hated to give up the 88 three times a week(I had worked so hard to get there!) and couldn't even go down to 2 times as the symptoms have been intolerable. (The sudden, unexplained tearfulness for no reason has been the worst and feels as if I've lost my sense of emotional control.) But it also feels as if I'm backsliding. This is what I had to do last spring to cope with the first hyperthyroid bout and then I've been crawling my way back up re: dosage.
I have just been reading about the overtimulation of the thyroid gland due to an excessive dose and these hyperthyroid-like symptoms are all listed. I also have had the hyperactivity/cleaning, "antsiness," inability to sit/relax/read, insomnia, and heat intolerance symptoms. In fact, the oddest thing is that I experienced severe cold intolerance for a while (which is new for me) and then a week later I was no longer freezing all the time! That's when the hyperthyroid symptoms started.
Again, thanks so much for all of your help.
Thanks again for the support. Often it feels as if I'll never feel like my old self again. I've been struggling with this lack of well-being for about a year now.
I did stop taking the Synthroid for two days last week and dropped down to 75 mcg. as I couldn't tolerate anything more. I hated to give up the 88 three times a week(I had worked so hard to get there!) and couldn't even go down to 2 times as the symptoms have been intolerable. (The sudden, unexplained tearfulness for no reason has been the worst and feels as if I've lost my sense of emotional control.) But it also feels as if I'm backsliding. This is what I had to do last spring to cope with the first hyperthyroid bout and then I've been crawling my way back up re: dosage.
I have just been reading about the overtimulation of the thyroid gland due to an excessive dose and these hyperthyroid-like symptoms are all listed. I also have had the hyperactivity/cleaning, "antsiness," inability to sit/relax/read, insomnia, and heat intolerance symptoms. In fact, the oddest thing is that I experienced severe cold intolerance for a while (which is new for me) and then a week later I was no longer freezing all the time! That's when the hyperthyroid symptoms started.
Again, thanks so much for all of your help.
Have you had an ultrasound to see if you might have a misbehaving nodule? Also, with your low FT4, it would really help to see what your FT3 is doing. Can you have bloodwork repeated with FT3, FT4 and TSH all on the same blood draw? It would be interesting to see what all that's doing while you're feeling hyper.
I understand your frustration with not feeling well for so long. My PCP (who I had to go to with my husband's diagnosis - he's a cabinetmaker!) started me on 88 mcg. Now, if you are over 50 or have been hypo for more than a few months or have a heart arrythmia, the recommended starting dose is 12.5 to 25 mcg. I was all three, so just imagine what 88 did to me. Within two weeks, my tachy had gone wild. So, on PCPs advice I backed down to 44. Two more weeks, and tachy again. Back down to 25. I couldn't even tolerate that. So, I saw an electrophysiologist (cardio specializing in arrythmias) and got on the BB. My PCP had mucked up the thyroid so much that there was no way I was trusting her with my heart!
The BB made the 25 mcg tolerable. So, then I started increasing...very, very slowly. It was excrutiating. My labs weren't improving; I felt like I was "poisoning" myself every morning when I swallowed that little pill. PCP just kept say "need more thyroid" (that's a literal quote). I had no hypo symptoms, and I was just dumping more levo into my body to make the numbers better, and the more I took, the less well the BB controlled the tachy. This went on for just about a year. I finally found this site and started educating myself and realized it was time for a new doctor.
I found my endo a year ago last December. I went to him symptom-free, but with FT3/4 still on the floor of their ranges. He wanted to "nudge my numbers up". I was at 68.5 mcg per day at that point. I didn't think my numbers needed nudging, but our relationship was pretty new and I was paying him the big bucks for his experienced opinion, so I went along. He switched me from generic to Levoxyl, then increased me to 75 after six weeks. So far, so good. Labs were still abysmal. That's when he wanted to increase me to 88 in one swell foop, and I refused, but agreed to 81.5. That's when I went hyper, and that's when he decided something else did have to be going on and I got the PRTH diagnosis. I was finished increasing. Interestingly enough, I am still taking 75...never have gotten to the 88 I was started on.
Long story, and I don't usually like to go on so about my own saga. It's kind of a long way of saying "trust your instincts". I knew what I was doing wasn't right, but I kept having the "bad patient" guilt. In my mind, I thought I HAD to get back up to the 88 mcg originally prescribed and that my labs HAD to be the perfect FT4 midrange and FT3 upper third. It just doesn't work the same for all of us.
Anyway, I do understand what you're going through. How would you feel about switching brands? It may not do a lot, but it won't upset the apple cart too much, either. If it helped, it certainly would be an easy fix, if not, no harm, no foul.
I understand your frustration with not feeling well for so long. My PCP (who I had to go to with my husband's diagnosis - he's a cabinetmaker!) started me on 88 mcg. Now, if you are over 50 or have been hypo for more than a few months or have a heart arrythmia, the recommended starting dose is 12.5 to 25 mcg. I was all three, so just imagine what 88 did to me. Within two weeks, my tachy had gone wild. So, on PCPs advice I backed down to 44. Two more weeks, and tachy again. Back down to 25. I couldn't even tolerate that. So, I saw an electrophysiologist (cardio specializing in arrythmias) and got on the BB. My PCP had mucked up the thyroid so much that there was no way I was trusting her with my heart!
The BB made the 25 mcg tolerable. So, then I started increasing...very, very slowly. It was excrutiating. My labs weren't improving; I felt like I was "poisoning" myself every morning when I swallowed that little pill. PCP just kept say "need more thyroid" (that's a literal quote). I had no hypo symptoms, and I was just dumping more levo into my body to make the numbers better, and the more I took, the less well the BB controlled the tachy. This went on for just about a year. I finally found this site and started educating myself and realized it was time for a new doctor.
I found my endo a year ago last December. I went to him symptom-free, but with FT3/4 still on the floor of their ranges. He wanted to "nudge my numbers up". I was at 68.5 mcg per day at that point. I didn't think my numbers needed nudging, but our relationship was pretty new and I was paying him the big bucks for his experienced opinion, so I went along. He switched me from generic to Levoxyl, then increased me to 75 after six weeks. So far, so good. Labs were still abysmal. That's when he wanted to increase me to 88 in one swell foop, and I refused, but agreed to 81.5. That's when I went hyper, and that's when he decided something else did have to be going on and I got the PRTH diagnosis. I was finished increasing. Interestingly enough, I am still taking 75...never have gotten to the 88 I was started on.
Long story, and I don't usually like to go on so about my own saga. It's kind of a long way of saying "trust your instincts". I knew what I was doing wasn't right, but I kept having the "bad patient" guilt. In my mind, I thought I HAD to get back up to the 88 mcg originally prescribed and that my labs HAD to be the perfect FT4 midrange and FT3 upper third. It just doesn't work the same for all of us.
Anyway, I do understand what you're going through. How would you feel about switching brands? It may not do a lot, but it won't upset the apple cart too much, either. If it helped, it certainly would be an easy fix, if not, no harm, no foul.
Hi,
Thanks so much for your support and for sharing your story. Sorry that you've had to struggle with all of this and for so long. What an ordeal. Yes. I know exactly what you mean re: poisoning your body. I feel the same way as if I'm ingesting a daily toxin! I totally agree that there are numbers and then there is the issue re: how one feels in his or her body. But I also struggle with the "bad patient" issue since I've actually gone down more than one dosage notch. There was no other way. However, I would welcome a period of hypothyroidism so I can get some needed rest/sleep.
I've asked for a FT3 and other options/tests Unfortunately, my endocrinologist doesn't think it would be helpful or doesn't think that changing brands help. I'd like to have one done and I'm open to any other options that make sense!!
I also read on the Internet that there are people who people who are hypersensitive to Synthroid and should not take it.
Take care of yourself and thanks again.
Thanks so much for your support and for sharing your story. Sorry that you've had to struggle with all of this and for so long. What an ordeal. Yes. I know exactly what you mean re: poisoning your body. I feel the same way as if I'm ingesting a daily toxin! I totally agree that there are numbers and then there is the issue re: how one feels in his or her body. But I also struggle with the "bad patient" issue since I've actually gone down more than one dosage notch. There was no other way. However, I would welcome a period of hypothyroidism so I can get some needed rest/sleep.
I've asked for a FT3 and other options/tests Unfortunately, my endocrinologist doesn't think it would be helpful or doesn't think that changing brands help. I'd like to have one done and I'm open to any other options that make sense!!
I also read on the Internet that there are people who people who are hypersensitive to Synthroid and should not take it.
Take care of yourself and thanks again.
You can get on the internet and order you own FT3, FT4 and TSH, without a doctor. Some of the sites have you stick you finger and send the sample in to them, others order the tests from your local lab. They draw your blood, and the results go directly to you.
Some people are sensitive to the different T4 meds. Some need to add some Cytomel (T3) to get the right FT3/FT4 balance in their bodies. Others only do well on dessicated porcine thyroid, which has both T3 and T4 along with other thyroid hormones of less importance and trace minerals, etc.
Considering how stubborn your doctor is (he doesn't even want to try a different brand...is he working for Abbott Labs?!), it's probably going to mean finding a new doctor. I don't think a lot of any doctor who doesn't order FT3, even less of one who refuses to order it on patient request, and even less of one who ignores a patient's symptoms and refuses to try anything different. Repeating the same thing over and over again, expecting a different outcome, is a sign of insanity...lol.
Check out the tests available online...
Some people are sensitive to the different T4 meds. Some need to add some Cytomel (T3) to get the right FT3/FT4 balance in their bodies. Others only do well on dessicated porcine thyroid, which has both T3 and T4 along with other thyroid hormones of less importance and trace minerals, etc.
Considering how stubborn your doctor is (he doesn't even want to try a different brand...is he working for Abbott Labs?!), it's probably going to mean finding a new doctor. I don't think a lot of any doctor who doesn't order FT3, even less of one who refuses to order it on patient request, and even less of one who ignores a patient's symptoms and refuses to try anything different. Repeating the same thing over and over again, expecting a different outcome, is a sign of insanity...lol.
Check out the tests available online...
Thank you!! Thank you!!! I totally agree... You're so wonderfully knowledgeable, articulate, and proactive!! I really appreciate your support and input. That's the way I've been feeling. My endocrinologist thinks that adding a T3 would be problematic given that it suppresses the TSH and could contribute to further hyperthyroid symptoms. I know that this hypo/hyper yo-yo ing is intolerable. I see a new internist next week.
Take care!
Take care!
I'm so glad you're seeing a new doctor...Don't let him get away without ordering FT3! Let us know how you make out and best of luck!
Hi,
Thanks!
Do you know if taking a Synthroid dose close to the time of the blood draw i.e. FT3, FT4, and/or TSH interferes with the results?
Take care.
Is there ever a straightorward answer to ANY question around here?!
Another controversial area...some doctors say take your T4 meds before having blood drawn, others say not until afterwards. I feel the important thing is consistency...either always take it or never and have blood drawn at approximately the same time every time, no matter what time that is. The best thing to do is ask the doctor ordering the tests so that he gets results the way he's used to seeing them....we don't want to confuse him after all, do we? Meds with T3 in them are a different story...you want blood drawn before taking those.
My thought is that you are measuring a medicated level once you are on meds, so why skip a dose? Isn't that slanting the results?
Another controversial area...some doctors say take your T4 meds before having blood drawn, others say not until afterwards. I feel the important thing is consistency...either always take it or never and have blood drawn at approximately the same time every time, no matter what time that is. The best thing to do is ask the doctor ordering the tests so that he gets results the way he's used to seeing them....we don't want to confuse him after all, do we? Meds with T3 in them are a different story...you want blood drawn before taking those.
My thought is that you are measuring a medicated level once you are on meds, so why skip a dose? Isn't that slanting the results?
Thanks! I've always been confused by this.... One endocrinologist years ago told me that I shouldn't have a blood test within six hours of taking my Synthroid. Others have not said anything. Do you think that the skipped dose the morning of the most recent TSH could have impacted the level? I wouldn't think so given how long it takes for a TSH to shift.
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