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Purpose of thyroid medication when blood work is normal
I have a goiter, 1"x1"x 2" and a 2 centimeter nodule, it was tested negative for cancer or any inflamation, or disease.
I'm confused about why I started on 100MCG Levithroxin (sp) it took my counts to double normal, now I am on 88MCG...I'm wanting to know what the goal is in this up and down...I get so ill with each change for about 5 days.
Are we trying to take the level high, then low, then level, or what is the purpose?
My Dr. will not tell me anything, he just writes a prescription, and if I ask a question I get yelled at, I don't know anything about this, except what I have read on the Internet.
I'm also being treated for PTSD with Clonipin, and Xanax and Hyomax for Irritable bowel. Sharon
I'm confused about why I started on 100MCG Levithroxin (sp) it took my counts to double normal, now I am on 88MCG...I'm wanting to know what the goal is in this up and down...I get so ill with each change for about 5 days.
Are we trying to take the level high, then low, then level, or what is the purpose?
My Dr. will not tell me anything, he just writes a prescription, and if I ask a question I get yelled at, I don't know anything about this, except what I have read on the Internet.
I'm also being treated for PTSD with Clonipin, and Xanax and Hyomax for Irritable bowel. Sharon
COMMUNITY LEADER
You wrote: "my daughter said, if we are not content that this new Dr. will listen and be willing to investigate these other options, i.e. tests." Why do you not want to go ahead and get the tests? That's what's going to help you in the long run because it doesn't sound like your doctor is taking your symptoms into consideration much.
I don't agree that all endo's are into the numbers-- I have one who looks FIRST at my symptoms, then at the numbers. My TSH stays *very* low -- in fact, much lower than yours, but so long as I feel good and my FT3 and FT4 are good, he leaves things alone. See the key here is the FT3 and FT4 -- I've had other doctors who adjust my med based solely on TSH and because it stays low, they assume I'm hyper when I'm not. I even had to point out to my "newest" pcp, not to long ago that my FT4 and FT3 are good and in order to keep them there, my TSH is going to stay low. It was actually sort of a "shocker" for him, but he didn't try to change my med again.
The problem with endos is that a lot of them are more into diabetes than thyroid, so you have to make sure you get one who knows thyroid. And you don't even really have to see an endo -- just a doctor who understands thyroid, is willing to look at your symptoms, as much or more than the labs and treat you accordingly.
Another thing is that apparently there's not much covered on thyroid issues in med school and I'm not sure whether doctors have to get CEU's to renew their licenses or not, but apparently they don't take classes on thyroid, that will get them up to date with the testing/treatments.
I think there are probably quite a few of us on this forum who are finding that once we put all the symptoms together, we've struggled with untreated thyroid issues for much longer than we realized. I'm actually dating mine back to around 20-30 yrs ago, when I felt like dog doo all the time, suddenly gained about 20 pounds, struggled to lose it and couldn't, then all of a sudden for no apparent reason, it just fell off. I cycled like that for many years and although I'd point out the gains/losses to my doctors, they always blew me off as eating too much, not exercising enough, etc. The whole time, I fought fatigue and other symptoms that were all "blown off" -- oh, the fatigue was often put down to depression and of course, they were all quick to offer anti-depressants, but never any thyroid tests!!! At one point, I dropped all the way back to 75 pounds and even on my small 5' frame, I was nothing but skin and bones; still no one checked my thyroid.
I don't agree that all endo's are into the numbers-- I have one who looks FIRST at my symptoms, then at the numbers. My TSH stays *very* low -- in fact, much lower than yours, but so long as I feel good and my FT3 and FT4 are good, he leaves things alone. See the key here is the FT3 and FT4 -- I've had other doctors who adjust my med based solely on TSH and because it stays low, they assume I'm hyper when I'm not. I even had to point out to my "newest" pcp, not to long ago that my FT4 and FT3 are good and in order to keep them there, my TSH is going to stay low. It was actually sort of a "shocker" for him, but he didn't try to change my med again.
The problem with endos is that a lot of them are more into diabetes than thyroid, so you have to make sure you get one who knows thyroid. And you don't even really have to see an endo -- just a doctor who understands thyroid, is willing to look at your symptoms, as much or more than the labs and treat you accordingly.
Another thing is that apparently there's not much covered on thyroid issues in med school and I'm not sure whether doctors have to get CEU's to renew their licenses or not, but apparently they don't take classes on thyroid, that will get them up to date with the testing/treatments.
I think there are probably quite a few of us on this forum who are finding that once we put all the symptoms together, we've struggled with untreated thyroid issues for much longer than we realized. I'm actually dating mine back to around 20-30 yrs ago, when I felt like dog doo all the time, suddenly gained about 20 pounds, struggled to lose it and couldn't, then all of a sudden for no apparent reason, it just fell off. I cycled like that for many years and although I'd point out the gains/losses to my doctors, they always blew me off as eating too much, not exercising enough, etc. The whole time, I fought fatigue and other symptoms that were all "blown off" -- oh, the fatigue was often put down to depression and of course, they were all quick to offer anti-depressants, but never any thyroid tests!!! At one point, I dropped all the way back to 75 pounds and even on my small 5' frame, I was nothing but skin and bones; still no one checked my thyroid.
Thank you, so much for sharing this information with me...you have shared things I had no idea about, and as I say, knowledge is power! Great point about the nodule possibly leaking some hormone...gads, is it any wonder we are like yo yo's...I wonder if many Dr. have even put much energy into learning all about the thyroid...we do have a teaching hospital about 4 hrs. away...OHSU, my daughter said, if we are not content that this new Dr. will listen and be willing to investigate these other options, i.e. tests. Then she is driving me to Eugene...about 1 1/2 hrs. away...or OHSU...My pharmacist friend, told me that endo Doc's are to into numbers, and he does not agree with that...
Oh, this heart rate of mine has been 100+ for the past yr. or more...this yahoo, just says, your heart is a little high and you BP is a little high, and that is the extent of our conversation. I've had a high heart rate as long as I can remember, as I went to enter an exercise class, and the nurse checked my pulse and refused to allow me to take her class....who knows, maybe I have had this thyroid stuff much longer than I just learned..????
My heart rate is now at 89. BP 113/66 I just did too much today, went to Church and mowed the lawn...which should not be too much, but since being sick, I can't do much. without this affect...frankly I have not seen my BP this low in a very long time...nor have I had a pulse rate so high, as since all of the treatment started, and know that I do keep track of my pulse...if something does feel right, I will go to the ER.
Again, thank you, you have been more helpful that you know...
Continue to stay quite well...I appreciate your being on the site, and your insight...
Oh, this heart rate of mine has been 100+ for the past yr. or more...this yahoo, just says, your heart is a little high and you BP is a little high, and that is the extent of our conversation. I've had a high heart rate as long as I can remember, as I went to enter an exercise class, and the nurse checked my pulse and refused to allow me to take her class....who knows, maybe I have had this thyroid stuff much longer than I just learned..????
My heart rate is now at 89. BP 113/66 I just did too much today, went to Church and mowed the lawn...which should not be too much, but since being sick, I can't do much. without this affect...frankly I have not seen my BP this low in a very long time...nor have I had a pulse rate so high, as since all of the treatment started, and know that I do keep track of my pulse...if something does feel right, I will go to the ER.
Again, thank you, you have been more helpful that you know...
Continue to stay quite well...I appreciate your being on the site, and your insight...
COMMUNITY LEADER
Yes, your FT4 is very high. You still need to know what your FT3 is.
It's possible that the nodule on your goiter is leaking some hormone also, so that, along with your med is just too much. And it's very possible to jump back and forth between hyper and hypo. I have a mulitnodular goiter and I've concluded that I jumped back and forth for years before I finally went completely hypo, but I knew nothing about thyroid issues at that time and none of my doctors ever considered it either. The doctor who dx'd me didn't even want to test my thyroid, when I asked about it. But finally did.
Keep an eye on that heart rate -- if it continues to stay high like that, you might need to consider going to the ER.
It's possible that the nodule on your goiter is leaking some hormone also, so that, along with your med is just too much. And it's very possible to jump back and forth between hyper and hypo. I have a mulitnodular goiter and I've concluded that I jumped back and forth for years before I finally went completely hypo, but I knew nothing about thyroid issues at that time and none of my doctors ever considered it either. The doctor who dx'd me didn't even want to test my thyroid, when I asked about it. But finally did.
Keep an eye on that heart rate -- if it continues to stay high like that, you might need to consider going to the ER.
PSS...........blame it on the thyroid...
Just pulled out my last lab and there was a
T4, Free (Direct) it was (H) 2.52ng/dL the range is 0.82-1.77
TSH (L) 0.024 range 0.450-4.500
Just pulled out my last lab and there was a
T4, Free (Direct) it was (H) 2.52ng/dL the range is 0.82-1.77
TSH (L) 0.024 range 0.450-4.500
PS
Don't know if this makes a difference, in the treatment, I have a 1"x1"x2" goiter, and a 2 cm nodule.
My counts were normal when we started...I guess they are trying to shrink the goiter...and I don't know if in order to do that, they have to take me way up, then way down...then ?
So much to learn...
Don't know if this makes a difference, in the treatment, I have a 1"x1"x2" goiter, and a 2 cm nodule.
My counts were normal when we started...I guess they are trying to shrink the goiter...and I don't know if in order to do that, they have to take me way up, then way down...then ?
So much to learn...
Thank you, so much for your feedback...When I ask the Dr. office where I am currently until I can get into my new one on the 15th. his nurse said, they only use one, and that is Levothryoxin...for everyone....
I know from the way my body is acting I am still on too much...when I had it filled my pharmacist said, he did not reduce that much at all, I told him my counts...my Pharmacist studied Thyroid...but decided he did not want to work with it, as it was too confusing...and he is a brain. Anyway I just came in from mowing...and my BP is 110/63 and pulse 112
Seems when my pulse is up the BP is down., that tells me something.....I've not had as low a BP in a very long time....and that heart rate is rediculous. No wonder I felt light headed and hot....exhausted.
I have copied and pasted your post into my e-mail, I do hope that is ok...so that I can write from it what I want the new Dr. to look at...my current never did Free T3 or 4 he only does TSH and T3. I appreciate your mentioning the conversion problem, my body has never reacted the way it should to meds...it tends to do the opposite, as in they put me on antidepressants, and behold I got much worse, and very suicidal....a wise nurse in the hosp. figured out the problem...and told the Dr. It was causing the very thing they gave it to me to stop...
I have a family history of not reacting well to medications. Then again, maybe we just needed good Dr. that would listen, and if necessary do some homework and figure out what they can do that just might work.
I know from the way my body is acting I am still on too much...when I had it filled my pharmacist said, he did not reduce that much at all, I told him my counts...my Pharmacist studied Thyroid...but decided he did not want to work with it, as it was too confusing...and he is a brain. Anyway I just came in from mowing...and my BP is 110/63 and pulse 112
Seems when my pulse is up the BP is down., that tells me something.....I've not had as low a BP in a very long time....and that heart rate is rediculous. No wonder I felt light headed and hot....exhausted.
I have copied and pasted your post into my e-mail, I do hope that is ok...so that I can write from it what I want the new Dr. to look at...my current never did Free T3 or 4 he only does TSH and T3. I appreciate your mentioning the conversion problem, my body has never reacted the way it should to meds...it tends to do the opposite, as in they put me on antidepressants, and behold I got much worse, and very suicidal....a wise nurse in the hosp. figured out the problem...and told the Dr. It was causing the very thing they gave it to me to stop...
I have a family history of not reacting well to medications. Then again, maybe we just needed good Dr. that would listen, and if necessary do some homework and figure out what they can do that just might work.
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