Hypothyroid: Am I over medicated on Levothyroxine?

[gooders650]

Hi, I'm looking for feedback from other hypothtyoird sufferers, particularly those who do endurance sports.

I was diagnosed hypothyroid 3 years ago and have been on Levothyroxine 50ug - 75 - 100 - 125 and last autumn begain alternating 125-150-125 as my TSH came back as 5 and 14. I've been feeling very well and started training again as a competitive cyclist. Everything wsa going well until about 2 weeks ago when I started feeling jittering, anxious, nervous, tired, slightly off balance occassionally vertigo, breathless, dry throat. Although I'm still eating the same as before I've lost 1kg in a week with no excercise which I've never done in my life. I haven't changed my diet or added any supplements.

In the previous 4 months I've worked hard to lose 7kg from my previous 78kg. Its now a lot warmer and although I was doing a lot of cycling 8-10hrs per week , which could I understand potentially leave my slightly hypothyroid after a ride, does the combination of weight loss, through hard excercise, combined with the warmer weather, mean that I'm now over medicated.

I had a test 4 weeks ago -  fasted, no meds in the morning of the test which came back at 1.8TSH (range 0.5 - 3) and T4 18 (range 12-22)

my Dr doesn't understand thyroid at all so no help there. Should I stop taking my meds for 2-3 days and see if symptoms improve?

Any help much appreciated

Paul

[gimel]

It is absolutely okay for you to ask for a change in meds.  The best way to approach it is to get the Free T3 and Free T4 test done.  Quite frequently hypo patients find that their body does not adequately convert the T4 med to T3.  You can get a good idea about that by assessing the relative levels of Free T3 in its range compared to Free T4 in its range.  If Free T3 is significantly lower than Free T4 , then in view of your symptoms, you need to add some T3 to your meds.  If both Free T3 and Free T4 are around the same level, but in the lower part of the range, then just adding some t4 may be the best approach.  

If you will get the Free T3 and Free T4 tests done, we will be glad to help interpret and advise further .  While there for tests I also suggest that you should test for Vitamin D, B12 and ferritin.  Hypo patients often find that they are too low in the ranges for those as well.

[channy07]

hi, thanks so much for your informative posts. I am going to my doctor next week about all my weird symptoms. Ever since my 3rd pregnancy I have been feeling a little off. I developed Burning mouth syndrome, dizzy spells, sore throat, sore muscles. He has never tested my FT3 and FT4. Im so curious to see the results. Is there omething they can prescribe for low levels of FT3? I really hope he will here me out and do some extra tests. Also im on Synthroid and thinking about asking for a change in meds. Is this ok to do? Thanks so much!!

[momtotwins29]

Do you have a recommendation for a thyroid doctor in the twin cities area of MN?

[gimel]

For almost 5 years now, I have been collecting names of doctors recommended by fellow members.  Unfortunately I don't have one close to you.  The best I have to offer is an Orlando doctor that I located on the Top Thyroid doctors site for Florida.  This list is not always accurate, but it is far better than starting with no prior knowledge at all.  In case you might be interested, I am sending the info by PM.  Just click on your name and go into messages.

[hueney333]

Thanks, I really appreciate our feedback. I am located in Melbourne, Florida. I didn't think to add that I am also slightly anemic (monitored frequently for it) and also take a very small dosage of a beta blocker, which is new over the last two years. I hope to get a recommendation for a thyroid doctor, but in the meantime I will do some research for one. Do you have any idea of what symptoms I should expect coming down on the med, or what to watch out for that might require more urgent treatment. My main issues now are extreme fatigue and lightheadedness at times. My blood pressure has been perfect.

[gimel]

So, as I understand it your doctor looked at your TSH test and decided you were over medicated and cut your dosage in half.  So you reduced your meds and then got a reaction and ended up in the ER, where they tested for Total T4, I assume, and told you that your were in the normal range.  Then your doctor said that the TSH test was "more specific", and that you should continue on the reduced dosage.  

Your doctor has no clue that TSH is totally inadequate as a diagnostic for dosing a hypo patient, when already taking thyroid meds.  He reacted to a low TSH test result and assumed you had become hyperthyroid, without recognizing that your actual thyroid hormone levels were likely fine, and you had no hyper symptoms.  Your doctor has the "Immaculate TSH Belief" and unless that changes, and you are treated clinically as described in the letter I linked above, you are going to continue to be improperly medicated.  

I don't know what the chances are that you doctor would ever recognize that he is wrong, and be willing to change his approach, but probably very slim.  I think your best hope is to find a good thyroid doctor that will treat clinically as described in the letter, by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without regard for resultant TSH levels.  Before I forget, let me add that frequently hypo patients find that they are too low in the ranges for other important areas as well, so you should also test for Vitamin D, B12 and ferritin, as a start.

If you will tell us your location perhaps a member can recommend a doctor for you, based on personal experience.

[hueney333]

Thank you so much for the above information. I have to admit that some of it is over my head, but I believe I have picked up some important points.  I saw my doctor today following my ER visit over the weekend. My doctor explained the difference in the labs from the ER and what he ran earlier in the week. Turns out that the ER ran a Total thyroid test and he ran the more specific TSH test. (I hope I am explaining this correctly :-)  He told me that the test he ran is more specific and that is what they use for managing the dose of Levothyrxine and that I should continue on with my new, reduced dosage from 100 to 50 that he prescribed earlier in the week (regardless of what the ER test showed). He wants to see me in a month to test me again. I did not get any test numbers, however, I am recalling that a couple of years ago when I was seeing another doctor that there was a question of what dosage he wanted to give me because I was at the top of the range and he thought he would prescribe according to that number. I'm now wondering if maybe I should have been treated for the middle range....as I read your post...and if I'm reading it correctly. Thanks for any more input you might have on this.

[gimel]

Believe me, you need to always make sure that you are being tested for the biologically active thyroid hormones, Free T3 and Free T4 each time you go in for tests.  These are not the same as Total T3 and T4.  The difference is that the totals are based on the total amount in your blood.  Most of that is bound up with protein molecules, thus inactive.  Only the small portion that is not bound to protein, thus "free" is biologically active.  That is why it is important to always request to be tested for both Free T3 and Free T4.  If the doctor resists, just insist on it and don't take no for an answer.  

Free T3 is the most important because it largely regulates metabolism and many other body functions.  Scientific studies have also shown that Free T3 correlates best with hypo symptoms, while Free T4 and TSH do not correlate at all.  So it is vital that your doctor test for both Free T3 and Free T4, along with the TSH test they always run.  You should also make sure that you get a copy of each lab report and write on there how you were feeling at the time and what meds/supplement doses you were taking as well.  

You didn't mention your medication and dosage, but if it is a T4 med, as I suspect, then you should note that frequently a hypo patient taking T4 meds only, find that their body does not adequately convert the T4 to T3, resulting in a fee T3 level that is too low in the range, and thus hypo symptoms.

I don't know what tests were done at the ER, but just because a test is in the so-called "normal' range does not mean that is adequate for you.  The ranges are far too broad.  Many of our members, myself included, say that hypo symptom relief required free T3 in the upper third of its range and Free T4 around the middle of its range.

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation.  The letter is then sent to the participating doctor of the patient to help guide treatment.  In the letter, please note the statement, "the ultimate
criterion for dose adjustment must always be the clinical response of the patient."  If your doctor is adjusting you thyroid meds based on TSH levels, that absolutely doesn't work.

http://hormonerestoration.com/files/ThyroidPMD.pdf

Many hypo patients also find they are too low in the ranges for other important areas.  If you haven't been tested for Vitamin D, B12 and ferritin, it would be a good idea to do so.

When test results are available, please post results and their reference ranges shown on the lab report and members will be glad to help interpret your status and advise further.  Don't let all this info bother you.  It takes a while to get up to speed on thyroid issues, but it is necessary for you to know and be able to guide your doctor, or else you will have to find a good thyroid doctor that you can rely on, and they are not easy to find.

[hueney333]

Oh sorry, forgot to answer your questions.....I have semi-annual bloodwork to monitor my thyroid medication. Doctor told me my thyroid levels were "off" so he adjusted my medication to a lower dose. I am hypo and have been on med for 20+ years for it. It runs in my family. My mother had goiter surgery and Grave's disease when she was younger, but lived to 83 and just took Synthroid for it. My sister also takes Synthroid like I do but does not have any physical issues. I have never had any issues until now. Separately, but possibly related, I am starting to go through menopause. I do not understand the thryoid tests and results. Any help would be appreciated.

[hueney333]

Well, it's been an interesting couple of days. I cut my thryroid med dosage in half per doctor's orders. On Sunday night I woke up after just two hours sleep wired and feeling weak. After almost two hours of trying to go back to sleep I started feeling worse. Did not feel anxious or stressed. Had heart palpitations and shortness of breath. Called son to take me to hospital. Gave them recent history of lab results (change in thyroid med). At the hospital they ran all the blood tests and took an Xray of my chest/heart and did an EKG. After a couple of hours I was told my blood tests are are normal (throid levels are in normal range) and everything else checked out and I could go home with anxiety medicine. When I asked if I should still be cutting my dosage in half they told me to see my doctor again and he will let me know what to do. They said it wasn't enough time for the two dosages of change in medicine to have made an impact on the test results. I have an appointment today with my doctor. Third visit in two weeks! This is not only costly, but embarrassing! How can the lab results differ so much? I have not asked for any of the numbers of the results because I do not understand them. Been relying on the doctor to treat me accordingly. Any thoughts from anyone, especially before my visit this afternoon? I really appreciate the feedback. I will post an update after seeing the doctor today. Thanks!!

[gimel]

On what basis did the doctor decide you were over medicated?  IF it was based on your TSH level, that is an incorrect diagnosis.  TSH is frequently suppressed when taking enough thyroid meds to relieve hypo symptoms.  

Also, what was the cause of you becoming hypothyroid?  Was it due to Hashimoto's Thyroiditis, the most common cause of diagnosed hypothyroidism?

Last, please post your thyroid related test results and their reference ranges shown on the lab report.

[hueney333]

Can anyone tell me if they also experience a drug-like stupor with depression spurts while they are overmedicated. It's the only way I can explain it, and it comes and goes....like all the other symptoms. I'm just wondering if this is part of the syndrome.

[hueney333]

Wow, I could have written your comment! I have recently been dealing with the sudden onset of these exact symptoms and also thinking I am going crazy. Been on medicine for 20+ years with slight changes in dosage. All of a sudden, my doctor told me I am overmedicated and to cut my pill in half (100 to 50). In the meantime, I am feeling awful and can hardly function! This change sounds drastic to me, but from what I'm reading it seems pretty average. These symptoms are awful but it is good to know after reading these posts that they are normal and I'll just have to fight through it.

[goolarra]

Many doctors just don't get it.  If you've been stable for a while on a given dose, you don't just DOUBLE it if hypo symptoms return.  That's a ridiculous increase.  It's even worse if, like me, you are very sensitive to meds increases.  I went hyper with an increase of 6.5 mcg per day. Baby steps...you just can't rush this.

[Kaz1969]

Hi, i've had very similar problems, although not a keen sportsperson, originally diagnosed as hypo 4 years ago TSH of 6 took 50mcg of Levo TSH dropped to 2.5 and gradually all the symptoms went away, then about a year ago symptoms started to return TSH was 7 Doctor increased dose to 100mcg after about 2 weeks at this dose started to experience palpitations and horrendous anxiety (not normally an anxious person) had TSH tested again and it had droppped to 0.87, anyway to cut a long story short I now know that whenever I need to increase on Levo I have to do it very very slowly as much as 25mcg extra in a week can kick off the anxiety , I find altenrnate dose on alternate days is the best way then each week I have one extra day at the higher dose until the symptoms go away, I have also found that over time you begin to notice the signs of anxiety creeping up before the dose is too high andyou can slow down the increase.  Good Luck and keep trying you wil get there eventually.

[lynn1313]

I am currently over medicated with levo 125mg.  wow what a trip this has been.  i was taking armour thyroid for years and doing great only had to increase 2x's the last 9yrs.  due to unavailability of that med i recently started on levo 100mcg felt like **** increased to 150mcg and thats when the fun started.  i thought i was nuts.  like you i started to get panic attacks, small ache in the chest all the time, headaches behind my eyes and neck, and this weird cold chill all over.  almost felt flu like several different times...decreased to 125 and thought it was better but after like 3 days it all started again.  just called doc today and was told to stop the med x3 days and start taking half the 125mcg.  cant wait to get this dosing thing right cause it is so hard to deal with this every day....i feel for ya..i really thought i was going crazy....or having heart problems ect.  

[gooders650]

Boing...

Is there any who can help with advice/experience regard becoming over medicated with levothyroxine or synthroid?

many thanks
Paul

[gooders650]

thanks for the responses.

I think I'll reduce the dose to 100ug for the next week and see if symptoms improve. I'l book an appointment to see the Dr when I return, get full bloods, including TSH, FT3, FT4 and take it from there. Might try to get an appointment with Endo through my medical care.

Has anyone has similar problems ie over medicated on synthroid, levothyroxine?

thanks again!

[stella5349]

Losing weight can effect the amount of medication you may need. Stopping them would not be good - but tweeking them lower may be helpful to you.

Good luck on finding a doctor that gets it. I think if you worked with the doctor you have know and just tell them what you'd like to try would be helpful.

Lowering your meds may not eliminate your symptoms right away, but you should notice a difference within 3 weeks after the change. If it works great, if not then you need to test ASAP and see where you're off.

[gooders650]

thanks for the response... No FT3 or otherwise measured. The TSH and T4 were the lowest I've had. I think I need a Dr who has more of an understanding of thyroid  conditions and what they should be testing.

I was alternating the dose 125 one day, 150 the next, 125, 150 etc and that was fine, I felt great. I think that due to  gradual weight loss , 69.8kg this morning - so more 12% in 4 months, combined with hot weather, my metabolism is higher due to exercerise, that my levothyroxine supplementation should be less.

Symptoms are really rough at times, think I'm going to have a panic attack but try to keep calm and lay down. I always feel okay when I get up in the mornings but then by afternoon start to get worse.

I'm about to go on holiday for a couple of weeks so trying to work out - reduce meds, stop taking them (a NO NO  as you say)  what I can do otherwise its going to be a miserable 2 weeks.... I'm guessing by reducing my dose this is a safer way to go in the absence of tests - if the symptoms reduce over the next couple of weeks I know I'm slightly hyper.

thanks again
Paul

[redheadaussie]

First of all NO do not stop taking the medication for a few days. This medication is not like an aspirin where you get immediate relief. Your medication will have taken weeks to build up in your system. It will take weeks for it to go down again. By stopping it for a few days you have actually changed the level you took over the whole week. It has a half life of around one week, so by the following week it will be the same as you took last week. If that makes sense!

Do you know what your Free T3 was? Did they test for it? This is a good indicator of if the medication is working correctly for you.

For you it could be that you are feeling hyper. For me personally I feel hypo at the same levels as you, but your TSH at higher levels would have killed me, but  for you were at a hypo level. There is probably a time when you know you felt very good and comfortable with your TSH and T4 numbers. Those are more than likely your 'zone'. Being on the dose you are now may actually be too high.

When you say alternating your dose, do you mean on a daily basis, or weekly or what? Changing the dose too often will not give you the relief you need. As I said earlier it is a build up of the medication of around 4 to 6 weeks will the body be able to give you any feedback.

I used to do alot of long distance power walking. Just getting back into it again. I am a little hypo at the moment and  my Free T3's keep dropping. I am in the process of finding out if I have a conversion problem.

Cycling the way you are is not going to make you hypothyroid. It is your thyroid that is in control of that! If anything, exercise is crucial in keeping off the extra pounds that seem to magically jump on those who become hypothyroid. ( I say that tongue in cheek as many hypos truly don't eat much and seem to keep weight on too readily!)

Looking forward to hearing your response.
Cheers