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Having Problems with Levothyroxine
Hello everyone!
This is my first post. I saw a post that made me feel that some might not understand a couple of things. So, in my own (possibly unorthodox way) I will try to explain. Please understand that by having hypothyroidism & fibromyalgia they are two completely different medical issues even though they have some of the same symptoms. I say this because I have them both. They were diagnosed many years apart. Unfortunately I am being treated by a VA doctor that refuses to listen to me most of the time. I am considering talking to the VA about changing doctors. I'm having trouble taking Levothyroxine. I get over heated just sitting in my apartment in my panties. I have also had chest pain, as well as what's called chest wall pain, palpitations, shortness of breath & my anxiety is worse when I take it. It's odd though that the posts I've read no one has said anything about sensitivity to heat. I know the heat is difficult on everyone this year but other people around me don't seem to have my problem & my idiot VA doctor is not helping me. I stopped the Levothyroxine & the heat isn't bothering me like it was. I'm just hot outside like everyone else but comfortable with clothes on in my apartment. Yes, before you ask, I live alone. It has to have been the problem. I'm going to ask the VA doctor to refer me to an endocrinologist. I know he's going to give me a song & dance about it but he's not his body, it's mine. Contrary to what he thinks I know my body best. I would appreciate hearing anyone's thoughts on this. Can anyone help me?
This is my first post. I saw a post that made me feel that some might not understand a couple of things. So, in my own (possibly unorthodox way) I will try to explain. Please understand that by having hypothyroidism & fibromyalgia they are two completely different medical issues even though they have some of the same symptoms. I say this because I have them both. They were diagnosed many years apart. Unfortunately I am being treated by a VA doctor that refuses to listen to me most of the time. I am considering talking to the VA about changing doctors. I'm having trouble taking Levothyroxine. I get over heated just sitting in my apartment in my panties. I have also had chest pain, as well as what's called chest wall pain, palpitations, shortness of breath & my anxiety is worse when I take it. It's odd though that the posts I've read no one has said anything about sensitivity to heat. I know the heat is difficult on everyone this year but other people around me don't seem to have my problem & my idiot VA doctor is not helping me. I stopped the Levothyroxine & the heat isn't bothering me like it was. I'm just hot outside like everyone else but comfortable with clothes on in my apartment. Yes, before you ask, I live alone. It has to have been the problem. I'm going to ask the VA doctor to refer me to an endocrinologist. I know he's going to give me a song & dance about it but he's not his body, it's mine. Contrary to what he thinks I know my body best. I would appreciate hearing anyone's thoughts on this. Can anyone help me?
COMMUNITY LEADER
Are you actually having "heat exhaustion" or is it more like hot flashes, where all of a sudden you get really hot? Hot flashes can have the same symptoms as true heat exhaustion. I've had both.
Heat exhaustion is a failure of your body to cool itself. There are several things that can cause it and it may not be thyroid (or thyroid medication) related.
Dehydration is a major cause. Age, medications, weight, etc, all have a bearing on how well your body cools itself. Heat has never bothered me, either, but the older I get, the less well I tolerate it. I also have more trouble with heat, since I gained weight (that was thyroid related). I find that the more water I drink, the less I have issues with it.
Heat exhaustion is a failure of your body to cool itself. There are several things that can cause it and it may not be thyroid (or thyroid medication) related.
Dehydration is a major cause. Age, medications, weight, etc, all have a bearing on how well your body cools itself. Heat has never bothered me, either, but the older I get, the less well I tolerate it. I also have more trouble with heat, since I gained weight (that was thyroid related). I find that the more water I drink, the less I have issues with it.
I'm beginning to wonder about my primary care doctor with the VA. He sent me a note in the mail that said he wasn't convinced that my medication was causing the problem. What a stupid man. I emailed him back stating that if he thought it was something else didn't he think he should start some kind of testing. I told him maybe he should start with a maturation index. It measures your hormones. Since the thyroid tests involve thyroid hormones values are part of the testing process why not see how the body is doing on all hormone levels. I'm probably way off base on this one but it's a place to start. Sometimes doctors have to test for all kinds of syndromes, body functions, etc. before they can figure out what's going on with a patient. There has to be a reason why I'm having episodes of heat exhaustion that I normally don't have. I was born & raised in the same county I live in so the heat doesn't usually bother me except when I stay at the beach for too long. I've been 1 time this summer so that's not the reason. I'm not a doctor so I'm scratching my head on this one. I've never heard of anyone having heat exhaustion without being outside. I can have episodes when I'm inside, in the air conditioning & not even doing anything. He's the doctor it's time he did some doctoring!!!
COMMUNITY LEADER
All Synthroid is levothyroxine, but not all levothyroxine is Synthroid........ There are several different manufacturers that produce brand name levothyroxine, such as Tirosint (gel cap), Levoxyl, Levothroid, Unithroid, etc....... You could be on one of the other brands, but if the VA does not allow brand names, you'd be on generic levothyroxine.
Besides those name brands, there are still other manufacturers that produce generic and each one uses different fillers/binders. It will say on your pill bottle, exactly what the medication is. If it says "Levothyroxine Sodium" or simply "Levothyroxine", it's a generic.
"I'm actually lucky that my thyroid is not very hypo." Hypo is hypo and even "a little" hypo can make you feel like death warmed over.
"As I said before the low dose I was on had my level just where they wanted it." It's not a matter of where "they" want it; it's where you feel best, and that's where many/most doctors fall down on the job. First, off they go only by TSH, then they treat only to get levels into the so-called "normal" ranges, and don't even consider symptoms. They simply give the remaining symptoms a different name and treat them with different drugs, such as steroids, pain killers, anti-depressants, etc, when all they really have to do is increase the levo dosage and/or add a T3 component and the problems are solved.
It's a good thing I'm not relying on VA, because my TSH plummeted to the basement as soon as I started on replacement medication, even though FT4 was below range and my doctor refused to test FT3; then he began decreasing my medication trying to bring my TSH back up....... I was SO sick, I really thought I was going to die.
Besides those name brands, there are still other manufacturers that produce generic and each one uses different fillers/binders. It will say on your pill bottle, exactly what the medication is. If it says "Levothyroxine Sodium" or simply "Levothyroxine", it's a generic.
"I'm actually lucky that my thyroid is not very hypo." Hypo is hypo and even "a little" hypo can make you feel like death warmed over.
"As I said before the low dose I was on had my level just where they wanted it." It's not a matter of where "they" want it; it's where you feel best, and that's where many/most doctors fall down on the job. First, off they go only by TSH, then they treat only to get levels into the so-called "normal" ranges, and don't even consider symptoms. They simply give the remaining symptoms a different name and treat them with different drugs, such as steroids, pain killers, anti-depressants, etc, when all they really have to do is increase the levo dosage and/or add a T3 component and the problems are solved.
It's a good thing I'm not relying on VA, because my TSH plummeted to the basement as soon as I started on replacement medication, even though FT4 was below range and my doctor refused to test FT3; then he began decreasing my medication trying to bring my TSH back up....... I was SO sick, I really thought I was going to die.
Thanks Barb for the heads up. I'm not sure exactly what he ordered. He just said I'd need blood work in 8 weeks. I'll ask the lab what he ordered. I can request they do the additional levels & they will get an ok from the Endo & he should agree with it. We'll see.
The Endo said the med I was on is really Synthroid but since the VA does not allow name brands they found a way past it by calling it something else. He assured me that I was not on a generic. Levothyroxine is Synthroid. I knew that because I looked on the web before I went. I don't trust everything I'm told especially when it comes from the VA. I always do some research before I ask about medication if I can. Still it can be fillers that gave me the problem. Hopefully the new med will be here soon. He didn't seem worried that there would be a delay in my taking the med. I'm actually lucky that my thyroid is not very hypo. It's just low enough to start taking meds. As I said before the low dose I was on had my level just where they wanted it.
The Endo said the med I was on is really Synthroid but since the VA does not allow name brands they found a way past it by calling it something else. He assured me that I was not on a generic. Levothyroxine is Synthroid. I knew that because I looked on the web before I went. I don't trust everything I'm told especially when it comes from the VA. I always do some research before I ask about medication if I can. Still it can be fillers that gave me the problem. Hopefully the new med will be here soon. He didn't seem worried that there would be a delay in my taking the med. I'm actually lucky that my thyroid is not very hypo. It's just low enough to start taking meds. As I said before the low dose I was on had my level just where they wanted it.
COMMUNITY LEADER
I'm really relieved to hear that you had a good visit with the endo, today. I'm totally disappointed that he's only going to test TSH in 8 weeks. From past experience, I suspect that he, too, will keep you ill unless he's willing to test and, properly, interpret FT3 and FT4. That's where my doctor went wrong...... treating by TSH only.
Unless I missed it, you didn't post comments by your primary doctor. Of course, the inserts would not come with our medications, if they weren't important....
Like most medications, different manufacturers of Levo use different fillers/binders that some people are sensitive to.
At the end of the day - if you feel better about the visit, there's progress, because we have to have doctors we trust.
Unless I missed it, you didn't post comments by your primary doctor. Of course, the inserts would not come with our medications, if they weren't important....
Like most medications, different manufacturers of Levo use different fillers/binders that some people are sensitive to.
At the end of the day - if you feel better about the visit, there's progress, because we have to have doctors we trust.
I saw the Endo doctor today. He said that my reaction to the medication was not unusual. He started me on a different med & wants my TSH redone in 8 weeks. He was very nice & understood everything I told him. I don't remember which one he put me on. The new med will come in the mail. He told me if I have any problem with the new one to let him know right away. He didn't like the comments made by my primary doctor. He agreed with me that the other doctor was wrong commenting that we shouldn't worry so much about the the printed material regarding the meds that come with them every time. He like me said they wouldn't bother to print them if they didn't want us to pay attention to warnings. He agrees with me that I should consider changing doctors. So it was a good visit with a nice caring doctor.
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