Aa
crazy fluctuations in tsh
Hello!
Last November, through routine blood tests, my tsh was found to be .040. Because of that, the doctor ran a free T4 and a T3. The fT4 was 1.21 and the T3 was 154. She diagnosed me with subclinical hyperthyroid (I had no symptoms) and told me to retest in January.
In January, my tsh was 6.32, fT4 was 1.32 and T3 was 113. She said I was now hypothyroid (still no symptoms), and prescribed .025 mg of levothyroxine.
In March, my tsh was 4.56, and fT4 and T3 weren't tested, since my tsh was doing what she expected it to do on the levothyroxine.
Yesterday, my tsh was .0006. She called and asked me to describe the pill I was taking, so she can confirm with the pharmacist that it is the correct dose (which is supposed to be .025 mg). She doesn't know why it would fluctuate so wildly. I asked her if stress could cause it to fluctuate, because in November when I was originally tested, I was under a great deal of stress as my mother had broken her shoulder very badly and I was caring for her, and about a month ago she broke her ankle and I had to go down to Florida to bring her back home, again pretty stressful. She didn't think stress could cause such a large fluctuation. She is going to run some more tests (I'm guessing fT4 and T3 again) and get back to me. I asked her if I should have antibody testing and she said it would depend on what the other tests indicate, but most likely yes.
Could Hashi's or Graves cause such wild fluctuations? Would increased stress increase thyroid hormone production, causing tsh to drop dramatically?
I have no family history of thyroid issues. I have no symptoms. I've always had cold hands/feet, so I don't count that as a symptom. I've always tended toward anxiety (anxiety disorders run in my family), but no sudden increase in that which can't be explained by what's going on in my life, so I don't count that as a symptom either. No sudden weight loss or gain. I don't have heart palpitations or depression. No diarrhea. No hot flashes. No sleep disturbances.
Any ideas of what might be going on? If my tsh continues to fluctuate by my T3 and fT4 remain in the normal range, do I even need to be treated?
Last November, through routine blood tests, my tsh was found to be .040. Because of that, the doctor ran a free T4 and a T3. The fT4 was 1.21 and the T3 was 154. She diagnosed me with subclinical hyperthyroid (I had no symptoms) and told me to retest in January.
In January, my tsh was 6.32, fT4 was 1.32 and T3 was 113. She said I was now hypothyroid (still no symptoms), and prescribed .025 mg of levothyroxine.
In March, my tsh was 4.56, and fT4 and T3 weren't tested, since my tsh was doing what she expected it to do on the levothyroxine.
Yesterday, my tsh was .0006. She called and asked me to describe the pill I was taking, so she can confirm with the pharmacist that it is the correct dose (which is supposed to be .025 mg). She doesn't know why it would fluctuate so wildly. I asked her if stress could cause it to fluctuate, because in November when I was originally tested, I was under a great deal of stress as my mother had broken her shoulder very badly and I was caring for her, and about a month ago she broke her ankle and I had to go down to Florida to bring her back home, again pretty stressful. She didn't think stress could cause such a large fluctuation. She is going to run some more tests (I'm guessing fT4 and T3 again) and get back to me. I asked her if I should have antibody testing and she said it would depend on what the other tests indicate, but most likely yes.
Could Hashi's or Graves cause such wild fluctuations? Would increased stress increase thyroid hormone production, causing tsh to drop dramatically?
I have no family history of thyroid issues. I have no symptoms. I've always had cold hands/feet, so I don't count that as a symptom. I've always tended toward anxiety (anxiety disorders run in my family), but no sudden increase in that which can't be explained by what's going on in my life, so I don't count that as a symptom either. No sudden weight loss or gain. I don't have heart palpitations or depression. No diarrhea. No hot flashes. No sleep disturbances.
Any ideas of what might be going on? If my tsh continues to fluctuate by my T3 and fT4 remain in the normal range, do I even need to be treated?
I just got my TSH results back and it's at a 20.92 is that even possible. I am freaking out right now. So this means what? Please help
Thanks goolarra.
I got the results this morning.
FT4 : 2.55 (range 0.82-1.77)
T3 uptake: 36 (range 24-39)--not really sure why she did this one since I asked for FT3
T3: 212 (range 71-180)
Vitamin D: 29.7 (range 32-100)
She referred me to an endo. I see him on June 23. I think I'll just see how it goes with him and then look for one if I think I need to. She did tell me to stop my levo.
My chest tightness and higher pulse went away. This morning my pulse was 71, which is more like it.
While I'm waiting, I'll work on upping my Vitamin D, start taking some selenium, and work on my stress.
Thanks to everyone for your advice and encouragement.
I got the results this morning.
FT4 : 2.55 (range 0.82-1.77)
T3 uptake: 36 (range 24-39)--not really sure why she did this one since I asked for FT3
T3: 212 (range 71-180)
Vitamin D: 29.7 (range 32-100)
She referred me to an endo. I see him on June 23. I think I'll just see how it goes with him and then look for one if I think I need to. She did tell me to stop my levo.
My chest tightness and higher pulse went away. This morning my pulse was 71, which is more like it.
While I'm waiting, I'll work on upping my Vitamin D, start taking some selenium, and work on my stress.
Thanks to everyone for your advice and encouragement.
Free T3 and T3 uptake are not the same...you want free.
It might be a good idea for you to choose an endo. You can pre-interview endos over the phone (or I faxed a questionnaire) to get an idea of how good they are with thyroid (many specialize in diabetes, and don't care a bit about thyroid). If you get to the referral stage, we can talk about that more, if you'd like.
Your elevated HR and chest tightness do sound like hyper symptoms.
Once diagnosed, I think many of us look back (hindsight being 20/20) and realize we might have been slighly hypo or hyper or swinging back and forth for many years. I know I now think I was...I was cold all my life, struggled to maintain a healthy weight, etc.
Early stages of Hashi's can be hypER, can swing from hypo to hyper or can move directly to hypO. Have you had antibody tests (TPOab and TGab). TSI (thyroid stimulating immunoglobulin) is the definite test distinguishing Hashi's from Graves'.
It might be a good idea for you to choose an endo. You can pre-interview endos over the phone (or I faxed a questionnaire) to get an idea of how good they are with thyroid (many specialize in diabetes, and don't care a bit about thyroid). If you get to the referral stage, we can talk about that more, if you'd like.
Your elevated HR and chest tightness do sound like hyper symptoms.
Once diagnosed, I think many of us look back (hindsight being 20/20) and realize we might have been slighly hypo or hyper or swinging back and forth for many years. I know I now think I was...I was cold all my life, struggled to maintain a healthy weight, etc.
Early stages of Hashi's can be hypER, can swing from hypo to hyper or can move directly to hypO. Have you had antibody tests (TPOab and TGab). TSI (thyroid stimulating immunoglobulin) is the definite test distinguishing Hashi's from Graves'.
The nurse called and said my doctor ordered some more tests. When I asked what tests, she said she'd check and call me back. It was T4 (she didn't specify "free" but that's what the doctor tested for before, so maybe it is) and T3 uptake and Vitamin D (which I requested). Is T3 uptake different from just T3, or is that another name for the same test?
I am amazed they can continue do so many tests with that one little vial of blood that they collected on Monday.
Hopefully I should hear the results of the test by Monday at the latest. Apparently if those results are "abnormal" I will be referred to an Endo. The nurse asked if I wanted to choose an Endo or if I wanted them to recommend one of theirs that they use, and I told her they could do it. I have no idea how to choose an Endo. I was really hoping it wouldn't get so complicated. I don't generally like doctors as it is, and now I may have two.
She didn't say anything about not taking my prescription of Levo, and I didn't ask, so I will continue to take it.
I started to have a tight feeling in my chest yesterday evening, so I took my BP. It was normal, but my pulse was 84 when it's usually in the low 70's. This morning it was 93, and later in the day it was 98. I mentioned it to the nurse when she asked if I had any chest pains, but apparently the doctor didn't say anything about it because the nurse didn't say anything when she called back to tell me what tests she did. I didn't feel "bad"--just the tightness, and the pulse wasn't THAT high, just high for me, so I'm not worried about it, but I'm thinking this is a sign of being hyper?
I got to thinking about this, and I wonder if I've had thyroid problems for several years. When my daughter was born 11 years ago, I lost my pregnancy weight pretty quickly (faster than with my firstborn), but I just chalked it up to her eating a lot (breastfeeding). I remember my pulse being high then as well (isn't it strange the things you remember?). I thought I was just really out of shape. And there's a photo of me from then, and my eyes look kind of bulgy. Maybe I had postpartum thyroiditis.
A year or three ago ;-) I remember getting really out of breath just from carrying laundry up the stairs. Again, just attributed it to being out of shape. And I remember having this tight chest feeling before, but it wasn't terrible, so I always ignored it. And until recently, I struggled for years with depression and anxiety, but I attributed that to heredity, as anxiety disorders seem to be pretty prevalent in my immediate family (two of my brothers have had panic attacks).
I think it was a fluke that the doctor caught it at all. I was pretty stressed at the time from my mom having broken her shoulder, but had otherwise been feeling anxiety and depression free for about a year. I guess just when you think things are going well...
Is thyroiditis something that repeats? Do you think these are episodes of Hashitoxicosis, or does it sound more like Graves? Does the tsh go up and down if you have Graves, or does it stay high until your thyroid is kaput?
I'm not sure which is worse, Hashi's or Graves, so I don't know which I hope it is, if it isn't something transient.
I am amazed they can continue do so many tests with that one little vial of blood that they collected on Monday.
Hopefully I should hear the results of the test by Monday at the latest. Apparently if those results are "abnormal" I will be referred to an Endo. The nurse asked if I wanted to choose an Endo or if I wanted them to recommend one of theirs that they use, and I told her they could do it. I have no idea how to choose an Endo. I was really hoping it wouldn't get so complicated. I don't generally like doctors as it is, and now I may have two.
She didn't say anything about not taking my prescription of Levo, and I didn't ask, so I will continue to take it.
I started to have a tight feeling in my chest yesterday evening, so I took my BP. It was normal, but my pulse was 84 when it's usually in the low 70's. This morning it was 93, and later in the day it was 98. I mentioned it to the nurse when she asked if I had any chest pains, but apparently the doctor didn't say anything about it because the nurse didn't say anything when she called back to tell me what tests she did. I didn't feel "bad"--just the tightness, and the pulse wasn't THAT high, just high for me, so I'm not worried about it, but I'm thinking this is a sign of being hyper?
I got to thinking about this, and I wonder if I've had thyroid problems for several years. When my daughter was born 11 years ago, I lost my pregnancy weight pretty quickly (faster than with my firstborn), but I just chalked it up to her eating a lot (breastfeeding). I remember my pulse being high then as well (isn't it strange the things you remember?). I thought I was just really out of shape. And there's a photo of me from then, and my eyes look kind of bulgy. Maybe I had postpartum thyroiditis.
A year or three ago ;-) I remember getting really out of breath just from carrying laundry up the stairs. Again, just attributed it to being out of shape. And I remember having this tight chest feeling before, but it wasn't terrible, so I always ignored it. And until recently, I struggled for years with depression and anxiety, but I attributed that to heredity, as anxiety disorders seem to be pretty prevalent in my immediate family (two of my brothers have had panic attacks).
I think it was a fluke that the doctor caught it at all. I was pretty stressed at the time from my mom having broken her shoulder, but had otherwise been feeling anxiety and depression free for about a year. I guess just when you think things are going well...
Is thyroiditis something that repeats? Do you think these are episodes of Hashitoxicosis, or does it sound more like Graves? Does the tsh go up and down if you have Graves, or does it stay high until your thyroid is kaput?
I'm not sure which is worse, Hashi's or Graves, so I don't know which I hope it is, if it isn't something transient.
I tried the gluten free during my flare up in the last 10 months. I got worse. I don't think that is any fault of going gluten free, I just don't think it did a thing to help my Hashimoto's. I wish it had. I can't touch gluten though without getting really ill now, so I must have had issues going on in the first place. I guess we are all so different. What works for one, might not work for another. We just have to find what works best for us.
M2- I had the same fluctuation you experiences, just a bit more extreme (tsh went from .001-26 in a month). I have TONS of symptoms though. I cannot tolerate any of the thyroid meds. Before this I was actually on half of the 25 mg every other day. That dose didn't make me hyper a few years ago, and surprisingly helped my hypo symptoms and my goiter. It sent me hyper recently though. You could try life without meds and see if that helps (if your doc agrees). You might find that you still fluctuate though (that happened to me). Either way you will know more than you did before! Good Luck!
M2- I had the same fluctuation you experiences, just a bit more extreme (tsh went from .001-26 in a month). I have TONS of symptoms though. I cannot tolerate any of the thyroid meds. Before this I was actually on half of the 25 mg every other day. That dose didn't make me hyper a few years ago, and surprisingly helped my hypo symptoms and my goiter. It sent me hyper recently though. You could try life without meds and see if that helps (if your doc agrees). You might find that you still fluctuate though (that happened to me). Either way you will know more than you did before! Good Luck!
I just saw your other post...thanks for that. The idea was to present both sides of the arguement. I'm glad you took away so much from it.
I HOPE she will test for whatever you ask...as you say, you are paying for this, you're the customer. However, some doctors have a little ego problem when it comes to patient input; we'll hope yours isn't one of them. If she does refuse to run FT3 (with a repeat FT4 and TSH) and antibodies, you can order these online without a doctor's order, but you can cross that bridge if it becomes necessary.
Silent thyroiditis is a possibility. However, a huge percentage of silent is post-partum. Had you recently had a child?
I agree completely...no meds should be taken unless you need them.
I actually had the same problem you're having. Oh, yes, I was hypo, but my symptoms went away on a very low dose of levo. I happen to be very comfortable low in the FT3 and FT4 ranges, and although I didn't know it at first, I have a pituitary issue. My TSH hovers permanently around 20.0. So, my doctors kept trying to nudge my FT3 and FT4 up and get my TSH down. That's what brought me to this board. I finally realized enough was enough.
You'll hear varying and passionate opinions about gluten. After doing a lot of reading, I'm not sold on the g/f theory by any means. If you truly have full-blown autoimmune Celiac disease, I believe there could be some connection. However, I don't put too much stock in the theory that all people with autoimmune thyroid disease benefit by going g/f. Do lots f research...
Vitamin D is important...deficiency often accompanies thyroid disease. So, it's a really good idea to ge that tested.
Best of luck. I hope your doctor is fully cooperative.
Silent thyroiditis is a possibility. However, a huge percentage of silent is post-partum. Had you recently had a child?
I agree completely...no meds should be taken unless you need them.
I actually had the same problem you're having. Oh, yes, I was hypo, but my symptoms went away on a very low dose of levo. I happen to be very comfortable low in the FT3 and FT4 ranges, and although I didn't know it at first, I have a pituitary issue. My TSH hovers permanently around 20.0. So, my doctors kept trying to nudge my FT3 and FT4 up and get my TSH down. That's what brought me to this board. I finally realized enough was enough.
You'll hear varying and passionate opinions about gluten. After doing a lot of reading, I'm not sold on the g/f theory by any means. If you truly have full-blown autoimmune Celiac disease, I believe there could be some connection. However, I don't put too much stock in the theory that all people with autoimmune thyroid disease benefit by going g/f. Do lots f research...
Vitamin D is important...deficiency often accompanies thyroid disease. So, it's a really good idea to ge that tested.
Best of luck. I hope your doctor is fully cooperative.
Thank you so much. When she calls tomorrow I will better know what questions to ask. Before continuing on the meds I will ask her to test for free T3 as well, and for antibodies. I assume she will test for whatever I ask her to since I'm the one paying for it?
I'm wondering if I had silent thyroiditis since I didn't have symptoms. She actually mentioned that the first time in November, but must have forgotten about it or come to a different conclusion in January, and not being very versed in thyroid issues I didn't ask, just went along with what she told me. Maybe the hyper phase of thyroiditis was followed by a hypo phase (again without symptoms), and instead of waiting to see if it would correct, she put me on levo (which had no effect on the way I feel). Maybe now it's corrected and the levo is just extra hormone, so my tsh is doing exactly what it's supposed to do. I figured she was the doctor, she knew best, but I'm finding from reading these and other boards that often the doctors don't know either.
If I need the levo, I don't mind taking it, it's not expensive, just a bit of annoyance. But if I don't need it right now, and if it doesn't do anything for me, why take it?
It seems like I have the opposite issue of many here: instead of symptoms that doctors blow off or refuse to treat, I have a doctor wanting to treat something I have no symptoms for. I guess I should be glad she's looking out for me. She seemed pretty flummoxed about what is going on, so I hope we find an answer.
Regardless, it's a good reminder to start taking better care of myself. I've read gluten can worsen autoimmune conditions, so I may attempt an elimination diet, just in case. And get my vitamin D level tested. And make sure I get plenty of magnesium for stress, and listen to my guided relaxation cd. That way maybe I can lessen its impact if it is autoimmune, and at the very least prevent other conditions.
I'm wondering if I had silent thyroiditis since I didn't have symptoms. She actually mentioned that the first time in November, but must have forgotten about it or come to a different conclusion in January, and not being very versed in thyroid issues I didn't ask, just went along with what she told me. Maybe the hyper phase of thyroiditis was followed by a hypo phase (again without symptoms), and instead of waiting to see if it would correct, she put me on levo (which had no effect on the way I feel). Maybe now it's corrected and the levo is just extra hormone, so my tsh is doing exactly what it's supposed to do. I figured she was the doctor, she knew best, but I'm finding from reading these and other boards that often the doctors don't know either.
If I need the levo, I don't mind taking it, it's not expensive, just a bit of annoyance. But if I don't need it right now, and if it doesn't do anything for me, why take it?
It seems like I have the opposite issue of many here: instead of symptoms that doctors blow off or refuse to treat, I have a doctor wanting to treat something I have no symptoms for. I guess I should be glad she's looking out for me. She seemed pretty flummoxed about what is going on, so I hope we find an answer.
Regardless, it's a good reminder to start taking better care of myself. I've read gluten can worsen autoimmune conditions, so I may attempt an elimination diet, just in case. And get my vitamin D level tested. And make sure I get plenty of magnesium for stress, and listen to my guided relaxation cd. That way maybe I can lessen its impact if it is autoimmune, and at the very least prevent other conditions.
Many doctors, even those like yours who test FT4 and T3, believe that TSH is the gold standard when diagnosing thyroid disorders. You are correct that the only test out of range is TSH, which as FTB4 pointed out is the least important of the thyroid hormones. In January, with an FT4 of 1.32 (0.82-1.77), I also question why you were put on meds. Your FT4 was right in the middle of the range...perfect. However, I know enough about how thyroid is too often treated to know that your doctor is diagnosing and treating by TSH alone, which is often a recipe for disaster.
The T3 test she is running is total T3. This gives the total amount of T3 in the blood, but much of that is bound by protein and unavailable to your cells. Free T3 tells what's available.
Early stages of Hashi's can be characterized by fluctuations from hyper to hypo and back again. As the thyroid becomes more and more compromised, it doesn't degenerate on a nice, gentle slope. Rather it sputters and spits for a while. It might be very much worth your while to have antibody testing just to set your mind at ease.
If you feel fine, you most likely are.
Yes, it would make sense that if your thyroid function were normal, TSH would drop as a result of taking levo. Say your body needs 100 mcg of T4 per day to function. Without meds, your pituitary is putting out a certain amount of TSH to get 100 mcg out of your thyroid. When you start taking 25 mcg levo, your pituitary needs to call for only 75 mcg from your thyroid, so it goes down.
Stress is a huge factor in recipitating autoimmune flare up. Many people live for years with antibodies before ever becoming symptomatic.
The T3 test she is running is total T3. This gives the total amount of T3 in the blood, but much of that is bound by protein and unavailable to your cells. Free T3 tells what's available.
Early stages of Hashi's can be characterized by fluctuations from hyper to hypo and back again. As the thyroid becomes more and more compromised, it doesn't degenerate on a nice, gentle slope. Rather it sputters and spits for a while. It might be very much worth your while to have antibody testing just to set your mind at ease.
If you feel fine, you most likely are.
Yes, it would make sense that if your thyroid function were normal, TSH would drop as a result of taking levo. Say your body needs 100 mcg of T4 per day to function. Without meds, your pituitary is putting out a certain amount of TSH to get 100 mcg out of your thyroid. When you start taking 25 mcg levo, your pituitary needs to call for only 75 mcg from your thyroid, so it goes down.
Stress is a huge factor in recipitating autoimmune flare up. Many people live for years with antibodies before ever becoming symptomatic.
Oops. I see my tsh was low, not "slightly low" in January. But if my thyroid function was normal, as indicated by T3 and FT4 levels, wouldn't it make sense that my tsh would drop as a result of taking levothyroxine?
If my pituitary gland is doing its job, then it adjusts tsh to maintain normal thyroid levels, yes? So tsh can go up and down but as long as my thyroid hormones are in range everything is working?
I ask this because my fT4 and T3 levels were in the "expected" range (according to the lab sheet) both times they were tested. I wonder why she put me on levothyroxine if my actual thyroid hormone levels were in range and I had no symptoms. What she told me when she put me on levothyroxine (in January, when my tsh was 6.32) that my thyroid was "sputtering out." Today she said it doesn't usually go hyper again after going hypo, that it usually stays hypo. I don't understand how I could be hyper, then hypo, even though my T3 and FT4 were in range?
November:
tsh: 0.040 slightly low (range is 0.450-4.500
T3 : 154 in range (range is 71-180)
FT4 : 1.21 in range (range is 0.82-1.77) -- diagnosed subclinical hyperthyroid (why?)
January
tsh: 6.32 (high)
T3 : 113 (in range)
FT4: 1.32 (in range) -- diagnosed hypothyroid and put on levothyroxine (why?)
I'm beginning to wonder if I need treatment at all. Shouldn't I have some sort of symptoms if I have thyroid disease? I feel fine, all things considered.
I ask this because my fT4 and T3 levels were in the "expected" range (according to the lab sheet) both times they were tested. I wonder why she put me on levothyroxine if my actual thyroid hormone levels were in range and I had no symptoms. What she told me when she put me on levothyroxine (in January, when my tsh was 6.32) that my thyroid was "sputtering out." Today she said it doesn't usually go hyper again after going hypo, that it usually stays hypo. I don't understand how I could be hyper, then hypo, even though my T3 and FT4 were in range?
November:
tsh: 0.040 slightly low (range is 0.450-4.500
T3 : 154 in range (range is 71-180)
FT4 : 1.21 in range (range is 0.82-1.77) -- diagnosed subclinical hyperthyroid (why?)
January
tsh: 6.32 (high)
T3 : 113 (in range)
FT4: 1.32 (in range) -- diagnosed hypothyroid and put on levothyroxine (why?)
I'm beginning to wonder if I need treatment at all. Shouldn't I have some sort of symptoms if I have thyroid disease? I feel fine, all things considered.
TSH is not a thyroid produced hormone, it is produced by the Pituitary to signal the thyroid to produce and secrete thyroid hormones ie: Thyroid Stimulating Hormone TSH When your FT3 and FT4 levels are low, your TSH will rise because the pituitary is trying to nudge the thyroid to produce more hormone.
Some with thyroid issues bounce back and forh a little from Hyper (Overactive) to Hypo (underactive) Any fluctuation in thyroid production could cause the TSH to go up and down, ot it is possible it could be an issue with the Pituitary itself, but most cases it is the thyroid, Your MD wiil do an anti-body teast and should be sending you for an ultrasound of the thyroid to check for nodules, some times these nodules will produce hormone in addition to the thyroid, this could cause your TSH to go up and down.
The reaining tests to be done should determine this issue. Regards FTB4
Some with thyroid issues bounce back and forh a little from Hyper (Overactive) to Hypo (underactive) Any fluctuation in thyroid production could cause the TSH to go up and down, ot it is possible it could be an issue with the Pituitary itself, but most cases it is the thyroid, Your MD wiil do an anti-body teast and should be sending you for an ultrasound of the thyroid to check for nodules, some times these nodules will produce hormone in addition to the thyroid, this could cause your TSH to go up and down.
The reaining tests to be done should determine this issue. Regards FTB4
Have an Answer?
You are reading content posted in the Thyroid Disorders Community
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
