Having Problems with Levothyroxine

[DawninFlorida]

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?

[AJWS6]

Hello fellow vet, wonderful news heat intolerance is no longer bothersome.  VA medical care, does everything in it's power to save $$$, specially towards vets without additional health care coverage.  I have a very stubborn endo, whom I have to visit on wendsday, but on the other hand my primary is an excellent physician, properly testing/adjusting hormone levels.  

Next time you visit the VA, ask physician or endo this question.  If ft3/ft4 are not important values in lab tests, then why do labs tests these values?  And why does the pharmacy have ft3 cytomel med in addition to ft4 Levo?  These values have to mean someting in addition to TSH?  

This is what I shared with my VA physicians, my tsh/ft3/ft4 have been tested ever since.  

VA medical system is outstanding in providing treatment/supplies to vets, but diagnoses ranks below sub level medical care.  Most VA physicians can't figure out a problem, if it was slapping them in the face, cause lab values are normal.  Sometimes getting a 2nd opionon outside the va medical system, get's thier attention.  

I transferred 3 primary physicians before, I was assigned the one I have now, and yes it took some time, but well worth it.  Wishing you well on your journey :)  

[DawninFlorida]

I finally found the blood work results from the last time it was done. They only did the TSH. It's very hard to convince the VA to do all 3 tests. I was looking through some old blood work results I have & found that at one time they did a TSH & T3. I asked my primary care doctor to add the T4 but I don't know if he will. He & I are not getting along. He thinks I was fine on the old meds. What a jerk! I'm going to put in a call to the Endo doctor tomorrow & ask him to please include all 3. We'll see where it gets me. You can't really work with the VA because it's more like fighting with them. When I was stuck in Indianapolis for almost 4 years I found they are much better at diagnosing health problems than Bay Pines. After I stood my ground on a few occasions they suddenly got the picture & were very cooperative. Even the staff in the ER where nicer to me. I almost hated leaving that facility because I was getting such good care. Now that I've been back at home in Florida for almost 2 years I feel like I'm starting all over. I'm not a push over & I do research before I challenge them. I have to be confident that I can back up what I'm saying & I haven't made much progress with them yet. As a patient I have rights & I'm going to use them. Little do they know I don't give up. When I go for my blood work I'm going to ask for a form to request another doctor. It's a long drive just to the clinc & Bay Pines is over an hour away & 2 bridge tolls. I refuse to continually fight with the one I have or his staff. They treat me like I'm an idiot & I'm far from being one. I worked in the medical field for years & I know my body a lot better than they do.

[DawninFlorida]

I'm due for blood work in October since they changed my medication. I've had no problem with intolerance to heat while on the new meds. I don't think I'm on too high a dose. I'm only on what you might say is the second step. Meaning I started on the lowest dose available & have only moved up to the next strength. I also take estrogen since I had a hysto in 1982. I've never had any problems with them & we have lowered the dose over the years.

[sunrock]

Endo are just better paid doctors...
they don't always give the right tests or do they believe in T3 medication which has been a LIFE saver for many, many of us.
Please beware of this.

Please be your own health advocate!! and do your research.

I for one have posted on heat intolerance on this forum and so have others...it has been discussed on here.
Don't give up, hang in there
sometime this becomes an interesting journey

Mia

[JuJuRN]

You have classic symptoms of too much Levothyroxine.  Did you go to the doc and did he check your TSH again?  Are you on any hormones, including birthcontrol?

[DawninFlorida]

I've had heat exhaustion 2-3 times before & what I'm having is more like heat exhaustion become it comes on gradually. It's not anything like a hot flash. I know what heat exhaustion is & how it affects my body. The only time it happened to me is when I get too hot at the beach & wasn't drinking enough water. I drink a lot of water now. If I drank anymore I'd float & I sure wish I had stock in a toilet tissue company. I had hot flashes a few times one year when I forgot to take my hormones. I got back on them & everything has been fine. I had a hysterectomy when I was 32.

I'm not over weight at all. I only weigh 130 lbs.That's another reason why this is so confusing to me. However, whatever is happening to me is a lot like heat exhaustion in that it takes a long time to get my body back to a normal temperature. These episodes can happen while I'm grocery shopping or even sitting in my apartment with the air condition going. That's why it's so confusing to me. I always take water with me when I go grocery shopping. If I even take my mom down to her bank which is like two blocks away, I take my water with me. It doesn't seem to matter how much water I drink. I'm still having the episodes but not as often & not as bad as they were.

So needless to say I'd really like to know what's going on.

[Barb135]

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.

[DawninFlorida]

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!!!

[Barb135]

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.

[DawninFlorida]

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.

[Barb135]

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.

[DawninFlorida]

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.

[Barb135]

We all misplace things now and then.  Will be interesting to see exactly what tests were run and the results.  That will really help us put the pieces of the puzzle together a lot easier.

[DawninFlorida]

Well, I've looked everywhere I can think of. I can't find the last results of my blood work. My VA doctor did send a referral to see an Endo. So tomorrow I'll go & see if we can straighten this out. While I'm there I'll get a copy of the last blood work. Can't believe I've misplaced my copy. I'm usually so careful about putting them in a file folder with the old ones. I hope I don't end up going up there (takes a little over an hour to get there & a $1.25 bridge toll each direction) just to get blood work & end up having to go back again for the results & a decision as to how we're gonna handle this problem. It was about 3-4 months ago when the blood work was done. I'll let you & others know how it goes with Endo tomorrow afternoon.

[Barb135]

Yes, it would be interesting to know exactly what tests have been run and where your results fall within the ranges.  Too often doctors think that simply being "in range" is good enough and it's not.  Many of us find that we have to adjust FT4 to at least mid range, and FT3 into the upper 1/3 of the range.  

I, personally, have to be quite close to the top of the range.  My TSH runs at  < 0.01, which, of course, makes everyone jump to the conclusion that I'm hyper, when I'm not. I had a doctor who was adjusting my med according to TSH and he kept decreasing my dosage, trying to get my TSH to come up and it wouldn't......... I seriously, thought he was going to kill me.

I had severe cervical spine pain, at one time, which went away once my thyroid levels began to climb into the upper ranges.  Nearly all my joint/muscle/bone pain went away, as well; all that's left is a bit of age related stiffness, if I sit too long or when I first get up in the morning.

Additionally, we find that some symptoms can "cross over" and apply to both hyper and hypo, so without adequate testing, it's really hard (if not impossible) to tell where you're at.

[DawninFlorida]

Thanks for your kind words. I have copies of all my blood work. I'll have to dig it out. I always ask for copies of any tests the VA does on me. I don't remember exactly what I was tested for. They've done so many tests on me over the years. I'll look for those results & get back to you so we'll know what tests they did. I have a lot of pain in my neck (cervical bone spurs) plus all the stuff that hurts due to my fibroymalgia. I've been off my thyroid meds approx 2 weeks & am actually feeling better. I could tell because now I get almost cold in the air conditioning & haven't felt this in several months. I'd rather be too cool than sweating & it almost dripping off me when I'm not even doing anything. Coming back in from the heat outside I'd almost be sick. It's summer so I expect to be hot but not the heat exhaustion I was having. The VA called Friday night at 7:15 pm telling me they wanted to schedule me for a referral they received but didn't tell me for what. Unfortunately I was in the shower. I'll call them Monday & find out what it's about.

[Barb135]

"Yes, I've had my blood work done every year. A couple of years ago they increased my medication sightly. I now show being exactly where I should be."  Are you only being tested for TSH?  If so, it's not surprising that you don't get well.  TSH does not correlate well with symptoms.  You need, also, the FT3 and FT4, as flyingfool indicated. If I were being treated by TSH, I'd be dead by now.  Unfortunately, too many medical professionals don't listen to patients, nor do they keep up on current data that would help them treat patients better.

While symptoms of fibromyalgia have been around "forever", the actual disease (term) has only been around since the late 1970's or early 1980's.  This was shortly after TSH was determined to be the gold standard in thyroid testing.  

http://emedicine.medscape.com/article/329838-overview

"Although the syndrome has been known by other names, the term fibromyalgia was introduced in 1976. This word is derived from the Latin root fibro (fibrous tissue) and the Greek roots myo (muscles) and algos (pain). Previously, fibromyalgia was most commonly described as fibrositis; this was a misnomer, as "itis" indicates an inflammatory component. Chaitrow asserts that no inflammatory process has ever been found to be part of this disease.[8] "

http://thyroid.about.com/od/thyroiddrugstreatments/l/blderryb.htm

This in an interview with Dr Dave Berry:

"If you remember it was a long time before the medical profession admitted that there were two new diseases to appear in the world that were not there before. Chronic fatigue and fibromyalgia were non-existent before 1980. This is seven years after the 1973 consensus meeting. So where did these two new diseases come from? The symptoms and signs of chronic fatigue and fibromyalgia were described in the literature in the 1930's as one way that low thyroid could be expressed. Treated early it was easily fixed with thyroid in adequate doses. But even then the clinicians had noticed that if a patient has low thyroid (chronic fatigue and fibromyalgia) for too long then it became more difficult to reverse all signs and symptoms regardless of what they were."

The "consensus meeting" was when TSH was determined to be the gold standard.

[AJWS6]

Hello friend, sorry to read of your difficulty with VA.  Ironically, every physician/specialist at VA treating me are excellent, cept the Endo, whom I've had most difficulty with, he's very uncooperative.  Your physician sounds like my endo, doesn't listen.  Hopefully you find a cooperative endo or physician, most at VA only test TSH or evaluate using only TSH.          

I transferred 3 physicians, took approx 3 yrs, to finally have a primary that is truly awesome, getting me back to health.  My primary tests TSH/FT3/FT4, Etc..... adjust meds accordingly.  I have no thyroid, so a TSH only endo can be a nightmare.

I have symptoms of hot/cold, but it's thyroid related.  Sometimes while everyone else is comfortable, I'm burning up, sweating or super cold/freezing/shivering.  

Good luck with your journey/treatments.  
      

[DawninFlorida]

Oh yes & by the way I am on a very low dose of Levo. They started with the lowest dose they have & have only stepped it up once so far.

AND, no fibro hurts all over. Joints, muscles, chest wall pain & many others that I won't take time to post. I follow a recommended fibro website. So no, I know & understand my diseases very well. I was in the medical field for over 20 years. I even spent 8 years working in a pharmacy. I thoroughly research every medical issue they say I have. Now I also need to see the Neuro doc for my almost constant daily headaches that almost become migraines.

[DawninFlorida]

Fibromyalgia was first diagnosed in the 1800's. So, I'm sorry but you're wrong when you say it "never existed prior to the invention and widespread use of TSH."  

Yes, some interesting work has been done on Fibro in the last few years but, there's still not a "cure." However, not everyone, including myself has responded with any relief of my Fibro.

I was diagnosed with hypo 5 years before I was diagnosed with Fibro. The Fibro was a gradual thing & they had watched my TSH carefully for years. When the dosage of Levo was increased approx. 2 years ago it had no affect on how I felt. My last blood work showed I was well within the normal range for TSH.

[DawninFlorida]

Yes, I'm just starting to push the VA doctor. He's a hard case & you really have to push him to get him to change his mind. When he first saw me talked about taking me off the med then when my blood work came back he changed his tune. He discovered I was right & he was wrong. He's not always as smart as he thinks he is & he doesn't know everything. What a great time I had laughing when I left the clinic that day!

[DawninFlorida]

Yes, I've had my blood work done every year. A couple of years ago they increased my medication sightly. I now show being exactly where I should be. The Levo just started making me feel sick this year. Time to change to something else.

[Barleystorm]

I'm on Levothyroxine and suffer the same problems you do. My doctor does listen to me. My best guess, handling the VA for my late dad in the past, push to get another doctor and the refer as well. Good luck.

[Totie]

I think you should see an endo...

My husband could not take Levo because it caused him to break out in rashes at any given time & place. He quit taking it all together..He is fine, at least he claims to be....he is a guy & refuses to go to the doctor.

I on the other hand had to swithc from Levo to Synthroid because my Endo did not like the Levo.

Have you had lab work done? Sometimes intolerant to heat is a sign of hyper.