help

is there anyone here who just cannot take the synthroid, and crashed on even a small amount of it, Im at such a loss as to what to .  I dont feel good, i have a pretty large goiter, and feel much worse when i take the thyroid hormone, would i be able to take the hormone if i had the thyroid out or anything like that

[goolarra]

I hate to answer a short question with ten of my own!  However, I had a hard time tolerating levo at first, and I know I'll end up asking all of them (and maybe more)eventually, so here goes.

Can you describe the side effects you have from taking the Synthroid?  Are you on brand name Synthroid, another brand, or generic?  What is your meds history?  What dose did you start at?  Did you have to decrease because of side effects?  Are you over 50, OR were you hypo for a long time before starting meds, OR do you have a history of a heart arrythmia?

I suspect your intolerance to the drug would be the same, thyroid or none.

Do you have the results of any thyroid labwork...free T3, free T4, TSH, antibodies?  If so, please post with the reference ranges and members will try to help you figure out what's going on.

[thyroidiniowa]

i was takin levothyroxine, started at 12.5, kept taking it, went up to 50m the goiter grew, so i went back on to 25, because i continued to feel reall bad,but not sure. sore throat, night sweats, dizzy , right side of neck enlarged, feeling faint, nausea, feel like something caught in my throat, tired confused, up and down emotions, hot flashes, cramps in the calves of my legs, went back to 12.5 got sever chest pain, and poundin heart rate. chest pain.  my tsh was 18.81 my thyroxine free was.67. free triiodothyronine was 2.20 and thyroid peroxidase antibody, 1000 iu/ml.  i take xanax
and hctz, and othing else, im 53 years old female, gone through menopause. i dont know , but i dont think i have a history or heart arrythmia

[thyroidiniowa]

do you see anything that lets you draw any conclusion about my situation

[goolarra]

Well, since your antibodies are elevated, you definitely have Hashimoto's.  Lots of people with Hashi's experience swings from hypo to hyper because as the thyroid is being destroyed, it becomes unstable and puts out hormones on a pretty insonsistent basis.  

Your FT4 (thyroxine) is still quite low (my lab uses a normal of 0.6-2.0 - you should check to see what your lab uses)...just barely in range. Your FT3, at 2.20, is close to the bottom of the range also (my range again - 1.8-4.2).  TSH also indicates that your are still quite hypo.  

Your doctor started you off nice and slow at 12.5mcg, which is good.  You definitely need to increase your levo to get yourself less hypo.  It takes several weeks before a change in dose stabilizes in your system.  How long have you been on meds altogether?  So, you have to be very patient.  

My first suggestion would be to switch from the generic levo to a brand name (Synthroid, Levoxyl, etc.).  Many people have trouble with the fillers in the different brands and switching can make a huge difference.  Start at 12.5mcg and build again.

I think all your symtoms (symptoms) could be due to undermedication and probably won't improve until you get the meds up a bit.  Don't hurry this too much...take your time.  If after switching from generic to brand name, the cardiac symptoms persist, look into a beta-blocker to control the palpitations.  They really help.  

What's hctz?

[thyroidiniowa]

hydrochlorothiazide, im scared to start it over, but an appointment a few days ago, indicated my figures were worse than those of dec 2008, which is what i gave you before

[goolarra]

So, you are on generic levo?

Once you get less hypo, I bet you won't need the HCTZ...I retained fluid something fierce when I was hypo.  It was one of the first symptoms to go away for me.

When was the last time you had thyroid labwork done?

[thyroidiniowa]

i had thyroid checked on tuesday, of this last week, not sure the figures, but he wrote me a letter and said they were getting worse, but im not takin anything now for the last couple months, it was making me too sick, how long can a person live with a bad thyroid, and if i have it taken out, can i take the medicine then

[thyroidiniowa]

i had thyroid checked on tuesday, of this last week, not sure the figures, but he wrote me a letter and said they were getting worse, but im not takin anything now for the last couple months, it was making me too sick, how long can a person live with a bad thyroid, and if i have it taken out, can i take the medicine then

[thyroidiniowa]

i took the medicine 6 months and never felt good at all, are there cases of this happening, where the synthroid doesnt absorb itself in the body, and is stored in the thyroid itself, hense, the thyroid grows larger, i just dont know anything about this very very confusing situation, but its detrimental to my health, and my quality of life is bad

[goolarra]

If you have your thyroid removed, it will not change your reaction to the medication.

If you've been off meds for a couple of months, then it's perfectly understandable that your labs are getting worse.

Your thyroid is getting larger because you are not on meds.  Once you get on meds, the thyroid doesn't have to try to work so hard, so it stops enlarging. The reason yours kept growing is that you weren't taking enough.

If you took meds for six months and never felt any better, I think that's because you were still hypo, i. e. you never took enough to  make you feel better.  I know that you have to get back on meds.  I'd try a different brand or a brand name versus generic.  For some people, that makes all the difference in the world.  I'd start out slow, and build very gradually...maybe 12.5 to start, then 25, the 37.5 all over four week periods.  You can live for a while without thyroid hormones, but life really isn't worth living at that point.

Get the actual results of your labs from Tuesday, post your free T3, free T4 (and their reference ranges) and TSH, and we'll have a much better idea of what's going on.

[thyroidiniowa]

i hear what your sayin, but the most i ever took was 50 and i got so sick, i thought i was gonna die, i had incredible chest pains, im reall scared about this., i really am, i dont wanna die, but i dont know how to make myself tolerate the medicine, im only 100 lbs and 4 ft 11,  so i dont know how much i can do here, the 50mcg, i took for ten days, the right side of my neck got huge.

[thyroidiniowa]

my endocrinologist kinda dismissed me, because it wasnt workin out on the levo, so some other quack, took my tsh the other day, its like they could care less, im a dificult patient, because i dont respond to the meds, so i guess she wanted to ditch me, we dont have private insurance, so i have been going to the teachin hospital in iowa city iowa, you would think that would be a good thing, im really worried about this. when i do take the meds it also feels like im goin through menopause again,

[goolarra]

I think you should find a good endocrinologist.  You need to find one that will treat you according to your free T3 and free T4, not just TSH.  Also, one who will pay attention to your symptoms and the side effects the meds cause you.

I also think that another brand name or a brand rather than generic might be a lot better for you.  Many on this forum report bad side effects from the fillers that are in the different brands.  If you try Synthroid or Levoxyl, for example, you might be really surprised at how different your experience is.  But, in order to do this you are going to have to find a doctor who knows what he's doing with thyroid.

You are so teeny (I'm jealous!) that I'm sure very small changes in dose probably effect you more than most.  Thyroid meds dosing is a bit of an art form, and if your doctor doesn't really know what he's doing, it can be really bad.

A teaching hospital should be one of the best places to go.  However, there are jerks everwhere, so you have to get a bit lucky in finding a doctor, too.

I think, with the right doctor, you can find a way to manage both your hypothyroid condition and the side effects of the meds.  You don't have to choose between the two.  I have never heard of anyone who couldn't tolerate one of the available products.

Are they testing your free T3 and free T4 also?  This is very, very important.

[thyroidiniowa]

i can try to get an appointment with a diff endocrinologist, but usually you get who you get there, and she has one way of dealing with this problem, and wont think outside the box, im at a loss

[goolarra]

Then I think you have to go somehere else.  I know it's tough...both my husband and I are self-employed and have catastrophic-only health insurance.  But you have to find a doctor who can help you.  You don't have to suffer...someone with knowledge will be able to figure out what's going on.

[thyroidiniowa]

is there a thyroid clinic , or study in the midwest

[goolarra]

I'm sorry, but I'm on the West Coast.  I have no idea.  Why don't you start a new thread asking members for resources in your area?  Be sure to get your city and state in the headline.  I'm sure we have lots of members in the midwest.

[thyroidiniowa]

if i cant take the meds, then what i just die  , have you heard of this before, im serious when i say, i think im having a heart attack, after a week or so of this synthroid

[goolarra]

I have never heard of anyone who couldn't take some form of levothyroxine.  There are several brands to choose from, the generic, Armour, and if nothing really agrees with you, there are pharmacies that will compound special preparations just for you.  I'm SURE that if you try an alternative to the Synthroid brand, you will find something that you can take.  Also, some of us have to take other medications to counteract the side effects of levo.  I get tachycardia (fast heart rate) as a side effect of the levo, so I have to take a beta-blocker to counteract that.

Getting medication to the correct dose is sometimes a trial, but you have to start again, and try another levo besides Synthroid.  You also have to explain to your doctor, before starting up again on a different brand, what you experienced on Synthroid.  Then he'll be prepared to give you something for the side effects if you need it.  Have you had a cardiac workup?

I wish I could say there was another solution, but it just takes time, patience, a good doctor, and some luck.  You'll get there...you just have to try something different.

[thyroidiniowa]

i think we can try a beta blocker, as this is the big reason i dont take synthroid, i feel like my heart is going to explode, how do you get your endocrinologist to get off her ***, and try different things,

[hope4thegoodstuff]

I'm in Iowa too.  There is one endocrinology clinic at Mercy hospital in Des Moines.  It is the Iowa Diabetes and Endocrinology Center.  number is 515-643-5100.

With me, I could go hyper on 25 mcg of synthroid and I did so daily.  I have Hashimoto's thyroiditis.  I had to have my thyroid out (no choice for me)  and now I'm on 150 mcg and not having any problems...still a bit tired, but have never gone thru the hyper storm that I was going thru before.  

[thyroidiniowa]

im terrified if i have out and i still cant take the medicine, also, how big of an operation is having it out, please explain what happens, time in hosp, etc, incisions

[goolarra]

I think in order to get your doctor to get off her butt, you have to do exactly what you're doing now...educate yourself and talk to other people who have been through it.  Then, go in to talk to your doctor and say very SPECIFIC things and ask very SPECIFIC questions.  For example, I tried taking Synthroid, and no matter how much I decreased my dose, I had tachycardia (rapid heartbeat) or heart palpitations (thumping heart beat) or both or chest pain (I don't know which you had).  I stopped taking it because I couldn't deal with the side effects.  Then, the questions...I've heard beta blockers can relieve the tachycardia and palpitations.  Can you prescribe a beta blocker for me along with the levothyroxine?  Doctors don't often deal well in the abstract...you have to tell them EXACTLY what happened and ask them for exactly what you want and need..

Having your thyroid removed is not a solution.  Except in the case of cancer or "dire "circumstances this is just not recommended.  As hope4thegoodstuff said, she had "no choice".

Here's my story:  I started out on 88 mcg.  Tachycardia increased markedly a couple of weeks later.  I reduced to 44 mcg.  A couple of weeks later...tachycardia again.  I reduced to 25 mcg, and you guessed it.  Finally I went to a cardiologist and got on the beta blocker.  Then I was able to increase my dose of levo.  Later, after a couple of more increases, I had to increase the BB also to compensate for the levo.  I think, for the moment, everything's balanced out...in the future, maybe not.

[thyroidiniowa]

im beginning to get a feel for this, yeah having a heart attack scares the hell out of me, the family physician did an ekg last week, and i guess it was ok, so i dont think i damaged my heart yet. its ridiculous that you have to tell a dr what to do, my god, thats why they went to medical school, wheres the schoolin even come in,

[goolarra]

I had another thought.  Another very specific question I would ask:  I've heard some people don't react well to the fillers in some of the meds.  Can you try prescribing a different brand/ brand vs. generic to see if that helps me?

Sometimes you have to beat them over the head!  They often know the science, but not the art of medicine or how to listen to a patient and hear what they're saying.

Tachycardia and heart palpitations seldom cause a heart attack...they're uncomfortable, but usually benign.  

[thyroidiniowa]

what about all the other nasty side effects, like night sweats,  

[thyroidiniowa]

have you heard of other people having these exact same problems, any one on this forum, that you recollect, the exact same things happening. let me know anything that you know of, that i can use for ammunition to have my endo to make some big changes in her strategy

[goolarra]

I'd mention all the side effects to her.  The symtoms (symptoms) you get when you're overmedicated, or you just start on too high a dose, or you're hyper are just about the same.  

As I told you, I had big problems when I first started out.  My PCP put me on 88 mcg to start even though I'm over 50, had been hypo for a long time before starting meds, and I have a history of a heart arrythmia.  Any one of those ought to have qualified me for a starting dose of 12.5 to 25.  I never have gotten as high as 88 to this day!!!

Lots of us have to take little tiny steps when we have to increase, or the same thing starts happening all over again.  With my last increase, I once again had tachycardia, sweating, couldn't sleep, etc.  And that was just from 75 to 81.5.

My experience starting out wasn't very different from yours.  However, I had been really hypo and knew I just had to keep taking the levo and building it up to a reasonable dose.  That's why I got on the beta blocker.

Also, the stuff about the fillers really has affected lots of people here...they'll be on Synthroid, for example, have cardiac problems, switch to Levoxyl or some other brand, and they have absoolutely no problem.  The medicine is the same, so it's something else in the pill that's causing it.

That's not the case with me, however.  I've been on several, and they all cause cardiac problems, but then again I have an arrythmia that I was born with.

Don't let anyone tell you that tachy and palps are not related to taking levo.  My PCP spent a year telling me they had nothing to do with each other.. Everyone here knows they are related, my endo knows they are, ordinary people know they are...where was she?

Don't let anyone tell you that some people are not ultra-sensitive to levo, either.  That's also well documented here.

I'd make a list of the side-effects the Synthroid gave you and have it in writing.  This will speed things up for both you and your doctor.  Also, If she thinks you're "well-prepared", she'll have a much harder time ignoring you.

I know it's terrible to have to go through all this just to get a doctor to listen, but sometimes there's just no choice.  It'll pay off in the end.

[thyroidiniowa]

what does acacia do, does it cause severe side effects, is there anything else i can use for leverage to get this endo to listen to me, its like ok, this is what you take, and you can vary the dose, but there is nothing but levo,
also haev you heard of anyone having side effects because they take xanax, and synthroid

[hope4thegoodstuff]

I didn't mean to leave you hanging there.  I don't like to talk about the C word.  I had a nodule on my thyroid that became cancerous.  That is why I had to have my thyroid taken out.  I didn't want to worry you, because not everyone has nodules like mine.  I'm told that it doesn't really happen all that often with nodules and sometimes the folks you read about out here are worse case scenarios.  So don't borrow any trouble and worry about things like that unless the dr's say otherwise.  So I have Hashi's and my thyroid was actually creating some hormone, then the nodule itself may have created some hormone, then I was taking synthroid and that was like a triple play going on in there.  I was also having difficulty getting my dr to understand that I was having trouble with the synthroid, but as dr's sometimes do...he only saw that my tsh was high and he kept telling me that I had to take the meds.  He would only look at TSH...didn't even want to try to check the free t3 and 4.  It took me three dr's to find one that would listen to me and about 6 months.  Third dr immediately offered to try a different med.  Yippee.  But then of course he wanted some other tests and that's when we found out that I had to deal with a bit more.  He contacted the endo doc for me in Des Moines.  

I'd have to agree that if you can keep your thyroid...I'd keep it.  It may take some time to get to the right med and the right dosage....Make sure they check your free t3 and free t4 when you get your checks as my endocrinologist advised she would not have put me on meds at all with just my tsh to go by.  It was mildly high, but not overwhelmingly.  If I would have felt better off the meds then on, then she would have left me off and just kept monitoring me as it was obvious that I was heading for hypothyroidism.  

[hope4thegoodstuff]

One more thing.  If you can't get your dr to listen...check out this site.
http://www.thyroid-info.com/topdrs/iowa.htm
people write in to this place and talk about dr's that have helped them the most with their thyroid problem.  I don't know where you're at, but maybe there will be someone close by.

[goolarra]

I don't know anything about acacia...try googling "acacia + side effects".

There aren't too many alternatives when it comes to thyroid meds...T4 only drugs (levo), T4 and T3 combinations, T3 only (rare) and Armour thyroid.  Aside from brand names, that's about the upshot of it.  But, you WILL find a way to do it.

I haven't heard of levo having interaction with xanax, but you can google either "levothyroxine + drug interactions" or "xanax + drug interactions" to find out.

I think I've given you all the suggestions I can think of to get your doctor to listen...sometimes you just have to look at her and say, "NO, you're not listening to me." or "NO, I've already tried that and it doesn't work for me".  Be forceful.

[hope4thegoodstuff]

I take protonix.  It's a stomach med....I take it an hour after my synthroid.  I haven't noticed that it causes me a problem.  
Goolarra is right.  Sometimes we have to remember that we are paying the dr's.  They are working for us.  We have a right to demand that they help us or we can basically fire them from being our dr.  We have to be our own advocates.  

Me and my first doc were starting to get nose to nose, but he changed groups and was no longer covered by my insurance.  The next dr I went to didn't inform me that she also was moving on to a new place, so I went to her three times and she was gone.  It was one of her co-workers that offered to take me on.  By that time I was fed up and I actually told that dr..."thyroid?  I didn't come here to talk about that...I have a UTI.  I won't ever talk to a dr about my thyroid ever again."  Then I basically told him where all dr's could put synthroid.  I'm sure I made a very good impression.  NOT.  Then he told me that he thought I had been somewhat misdiagnosed.  He thought I had hashi's instead of pure hypo.  As it turned out, I'm lucky to get the dr I got when I got him.  He made me understand the importance of keeping on top of my thyroid issues.  

[thyroidiniowa]

well they sent some synthroid, now the question is, should i take it and feel like **** again, or feel lousy but not have the crazy side effects, what do i do

[dani2776]

I am alot like you.  I cannot seem to tolerate the Synthroid either.  I am having severe diarrhea, sweating, nervous and dizziness which by the way is constant.  I am actually having an MRI of my brain today because of the dizziness but I am leading to a side effect of the Synthroid.  After I found out that synthroid contained lactose (I am lactose intolerant) and acacia I called my endo and said I think this might be why I am not tolertaing it to well.  He suggested I stop it completely to cleanse my system and then I am to see him on June 15th.  I am like you I am scared to stop it but I feel like **** while I am on it.  What to do?????

[thyroidiniowa]

went to a new doctor, and she decided since i have such an adverse side effect, to synthroid, she would treat me in advance for three weeks, with celexa and lysinprine. that is an antidepressent for the problematic symptoms of menopause that i am already over, and come back when i take synthroid, and the blood pressure meds to combat heart palpitations that may occur once again, when i start synthroid. she pretty much said if i cant take synthroid, im gonna die, has any one had the same kind of situation happen to them

[goolarra]

Start out LOW, increase SLOWLY (very), and try a brand other than Synthroid.

[Smilerdeb]

I would be looking at your femal hormones too as it may well be that the side effects of Synthroid and the menopause are causing this.
In regards to a T4 med, a Belta Blocker should do the job and slow down the heartrate.
ALSO......because you are Hypo, the anxiety you are feeling would be from that too.
Hypo is he\\ so is Hyper.
I tend to think that you have a panic disorder brought on by the fear of medications and also because of you being Hypo.
I would try the Synthroid and space out the BB in 4 doses spread out during the day.
Say you have to take 2 x 20mg beta blockers......then cut them in half and take 4 times a day. The first dose being an hour BEFORE you take the T4 med.

It is a well known fact that a lot of people are phobic to medications and the reason I say that is......I was one of those people.
This had a lot to do with anaphalactic shock with a lot of meds and ambulances being called.
I then developed a phobia thinking everytime I started a different med, I would get anaphalactic shock and that I would die.
To overcome that phobia.....I started by going to my Doctors surgery and take the med while I was in the waiting room (with his knowledge , of course).
It took me 3 days to overcome that phobia.

I am not saying you have that phobia but what I am saying is that it might be worth going to your Doctor and taking the T4 med there and sit there for a good hour.
Try that and see how you go.

As for the night sweats, they can be from a lot of things......for one, the meds being too high (hyper) which you are not and two...menopause.
And God those night sweats are a b@gger when they want to be.
I am 49 and finished menopause 3 years ago, still get the ocassional night sweats  and do know what you are going through.

Take Care :)

[thyroidiniowa]

i have been taking 50 mcg of levothyroxine for one month, and also celexa to help with the hormonal problems, and another blood pressure pill, should i up this to 75 mcg yet, the doctor wrote me and said that my thyroid was improving, and that my level is improving its 25,     and thats all it said, what am i to think that means, ?????

[goolarra]

Sounds like the letter I used to get from my former PCP after every lab.  All is said was "need more thyroid".  I think the message from my PCP was "come in for an appointment, pay me $200, and I'll elaborate".

If 25 is your TSH, it is still very high.  They should also be testing free T3 and free T4.  Without the "free's", it is impossible to adjust meds properly.  I'd ask if they did these, and if not, request them right away.

I wouldn't jump to 75 mcg in one step, since you have had problems with meds sensitivity in the past.  I'd ask the doctor for some 25 mcg tablets and split them in half.  Start out by taking your 50 mcg tablet every day and add 1/2 of the 25 every other day (get yourself a calendar, put it next to your meds and write down what you take every day).  Do that for a couple of weeks and if you are not having side effects, then try adding the half every day (62.5 mcg). If you do have side effects, cut back to adding the extra half pill only every third day.  Do that until it's time for labs again.  Then, reevaluate and see if you still need to increase.

Ask your doctor if he thinks this might be a plan for slowly increasing.