[scream_phoenix]

i'm gonna do my best to form coherent sentences, but i'm dying here.  i had radioactive iodine for my thyroid back in december.  at the time i was really wigged out with way too high thyroid levels (my TSH had always been about non-existent but my T3 and T4 level were about twice the normal amount when my doctor ordered the procedure)

a whole long preface, you can skip to the bottom for my question

[ i was diagnosed with hyperthyroidism two years ago, the same time i was diagnosed with type 1 diabetes.  i've been learning to live with the diabetes thing, and it hasn't been the worst thing in the world, but with my thyroid levels really high it was getting hard to control my blood sugars.  anyway i swallowed the radioactive iodine pill back in december, and the month of december still pretty much sucked - but that was for a lot of different reasons.  i thought my thyroid was pretty much dead at the end of january - because my mind felt really really slow, but my blood tests still showed my TSH almost negligible, and my T4 and T3 in the normal range.  so my endocrinologist told me to wait a whole nother month before getting it tested again.  i waited the whole extra month, waiting until i REALLY felt it - and by that time i was really in a fog.  it almost felt good, all teh stress chemicals finally subsided in me - even though i was slow as hell.  had to pester my endocrinologists office a week later to actually GET my results and guess what?  oh my TSH was only  . . . 54!!!  (normal is up to 3.5) i had my appointment with my endo one week later (only had to wait an hour in the waiting room, to see my endo for less than ten minutes) the appointment was about as perfunctory as it could be, and i had to force the issue to get her to prescribe cytomel (T3) instead of just waiting another six weeks on synthroid and getting my blood tested, because she said there's a chance this might get me back to normal faster.]

its been about a week and half since i've been on the thyroid meds and i don't really feel any better at all.  i know its supposed to take up to a whole month to reach an equilibrium (if indeed you're on the right dose of thyroid meds to begin with) but my question is for anybody that's had their thyroid removed, or had the radioactive iodine, or just takes meds for hypothyroidism - when's the best time to take them?  i just want to hear as much feedback as possible from anyone on thyroid meds. i know my endo said the best time was first thing in the morning on an empty stomach and then wait an hour to eat, but this doesn't seem to work for me.  i'm used to eating first thing in the morning after i've had my insulin, just to get my metabolism going.  waiting a whole hour to eat seems to defeat the whole purpose.  does anyone take their thyroid meds later in the day, between meals or at night?

i don't think anybody made it through to my question, but if they did i'd appreciate any kind of response.  i have a lot more sympathy with people on hypothyroid meds now.  i used to think going crazy with too much thyroid really sucked, but going crazy with no thyroid really sucks worse.  come back thyroid, come back!

[Penny Century]

i take mine fist thing in the AM, hour before food.
but, i'm odd and take it sublingual... but i'm not on the same meds as you.

is your T3 time released?

penny

[scream_phoenix]

i have no idea.  i seriously got less than ten minutes with my endocrinologist, so i asked what questions i could, and its wait another month to get my blood tested again.  i guess i could have written this thread in the 'Health Care System Sucks' thread too, because the whole experience so far has kind of pissed me off.  my endocrinologist is actually supposed to be one of the good ones in the city that i live, but she has so many patients that i see her every five months or so, and for brief periods of time.  all the rest of the stuff - like finding out what my blood test results were, and what changes i should make - i have to find out through her assistant or one of the other office people.  so i guess if i want to find out if its time released i better consult my local library.  i'm just wondering whether taking it on an empty empty stomach first thing in the morning, vs. two hours after a meal really makes a difference absorption-wise. 

[Penny Century]

i think first thing in the AM does really make a difference. 

a good endo doesn't necessarily have good bedside manner.  bad endos just flat out suck.  for some reason they're just below neurologists in terms of treating patients like shit.

Thyroid-Info.com is a good resource for thyroid questions.  i've learned a lot from shomon's books, and the website offers a lot of info from differing view points on the treatment of thyroid conditions.  there are some great FAQs and articles here on that website.  the site has a bit of a um, pro T3 agressive stance, but there are a few articles from those of the older only synthroid school, and i can reccomend books that are more traditional if you want (i'd have to look them up though.)

good luck.

penny

[revlow]

I've got hypothyroidism; never dealt with hyperthyroidism. Here's my experience and thoughts. First my experience:

1)  I take Thyrolar, which is a combination of T3 and T4 (like a combo of Cytomel and Synthroid). For me, I've found I need them both. One without the other = no go.

2)  I've been taking this for about 33 years.

3)  All my docs (including endos) have said, yeah...if you take 2 hrs after/ 1 hr before a meal, you'll absorb some more of it. However, their feeling is that this amount is fairly insignificant. That whatever difference will show in both how I'm feeling and my test results, and since we've been testing consistently -- and I'm tuned into how I should feel -- we're at a good level. If I notice a change or my test results are off, we'll adjust, though I haven't had to do so in decades. In other words, we've found the right dose that accommodates for this difference, and it's a steady and consistent amount for me. (Hope that makes sense.)

4)  My original thyroid specialist (one to whom people from states away came to see) had me take my thyroid meds in two doses: half in the morning, the other half in the early afternoon. Seemed to work, so I've stayed with this routine all this time.

As for your situation, my thoughts:

1)  It will take some time. You'll have some ups and downs till you reach the right level. I know it's hard, and of course you should communicate with your doc about all of this. But, in all likelihood, you will need to be a little patient.

2)  Since you've got another equally important issue to deal with, your diabetes and maintaining your blood sugar level, I would strongly suggest talking with your doc about this. My (not a doc) take on this is that it would be better to do your usual insulin and meal routine, and not worry about taking the thyroid med with or shortly after a meal. Thyroid levels and how much you'll need to take eventually can be adjusted to accommodate for this.

There have been a lot of warnings (like not to eat soy products with thyroid meds), which have later been disproven. I believe they still give that soy warning with the meds, but the data doesn't support it -- have read the studies. My docs say don't worry about the soy issue, just as they do the taking-with-a-meal issue.

Just my 2 cents. Hope this helps, or at least that it doesn't confuse you even more.

PS - Another good source of info, also from Mary Shomon, is: http://thyroid.about.com/

This post has been edited by revlow: 21 March 2006 - 12:00 AM

[Penny Century]

revlow, on Mar 20 2006, 08:59 PM, said:

4)  My original thyroid specialist (one to whom people from states away came to see) had me take my thyroid meds in two doses: half in the morning, the other half in the early afternoon. Seemed to work, so I've stayed with this routine all this time.

<{POST_SNAPBACK}>

oooh yeah, good advice...

T3 (unless it is compounded time released) tends to go out of the system pretty fast, so a lot of people who take T3 meds do it twice a day.  there's also a T3 that must be kept in the fridge.  i get them all confused now.  i take armour, the omg i'm weird and take pig thyroid glad one... my doc likes it, and it works.  whatever works, etc.

but yeah, for T3 twice a day dosing can really make a difference

yay revlow

[AirMarshall]

I'm hypothyroid and take Synthroid.

My doc never gave me any directions on time of day to take it, but did give me the standard one hour prioor or *[edit  "2 or 3 hours after"]* meals. 

The pill bottle comes with a sticker that says take in morning before breakfast. 

I haven't seen any justification for the time of day, anywhere.

I don't like waiting an hour because it tends to exacerbate my blood sugar level, but if I'm not in a rush I will do it and eat after showering, dressing.

Sometimes I skip the med and eat and take the synthroid later in the day.  I've even missed up to two days and take 3 days all at once.   I can't positively confirm whether it makes a difference or not.  Sometimes my missing doses is because I'm getting a little off kilter on my bipolar, so it's hard to sort out.  Did I make myself feel worse by missing doses and doubling up and misintrepret as bipolar, or was it all my mood?  Don't know.   My gut feeling is that doubling up doses probably is not good.  (yeah, no kidding).

In the end I think that it is more important to pick a time of day that works for you and stick with it.   Taking it an hour before lunch or before supper may be for your schedule.  

As far as effect, a month after starting therapy, the doc tested blood level and pronounced it perfectly in range.  I didn't notice much difference till maybe 7 weeks after starting, but the improvement was fairly rapid and quite noticeable.   Be aware that you levels may need adjusting later as your body adapts, so don't be afraid to call the doc if you don't feel good.

A.M.

This post has been edited by AirMarshall: 21 March 2006 - 02:49 PM

[scream_phoenix]

thank you guys, for all your replies.  i will go back and read them again, and read the links you posted.  this honestly helps A LOT, cause i'm completely new to this hypothyroid thing and its good to hear about as many peoples experiences and strategies as possible.

i'm feeling a lot better today, but i don't know if that's all thyroid or what.  i think if i let myself get stressed by the fact that i have to completely regiment my day and when i eat, and when i take my thyroid medicine - its just going to do more harm than good at first.  so i took my thyroid med around eleven today - about two and a half hours after breakfast- so we'll see how that goes.  the other day i decided i was just going to wait until the afternoon and take it whenever and that was a BAD idea, because my blood sugar and my mood just plummeted all of a sudden.  i'll have to read up on the cytomel (T3)'s half-life to see how that works.  my doctor was just going to have me on the synthroid (.125 mcg) for six weeks and re-test, but when i kind of protested that i could still be in the doldrums by then, she suggested adding the cytomel (i think i'm on 10 mcg?)  because that might bring me up faster.  didn't know there was a difference between the T4 and T3 schools though, i'll have to read up on that.  thanks again everybody (and anybody else in advance who has more to add)

[ncc1701]

Heya scream_phoenix,

OK here's my quick-and-dirty family-practice paragraph on T4 and T3.

I have no school of thought.  Just my Big Book of Biochemistry.  And I've never taken thyroid supplements.

A functioning thyroid gland produces both T4 and T3.

Both T3 and T4 are almost completely (99.9%) bound to plasma proteins. 

This means that only a tiny amount of what's in the blood is actually available (free) to the cells in the tissues.

T3 is the hormone that actually has effects in the tissues.

T4 is converted to T3 in the target tissues (basically all the tissues in the body).

15% of the T3 in the body is made by the thyroid gland.  The rest is made by various tissues converting T4 to T3.  So, 85% of the functioning T3 in the body is made from T4 by tissues.

That's important for a few reasons, mainly b/c different tissues need different amounts of T3 depending on the situation.

Also, there are a whole lot of possible reasons people can be clinically hypothyroid.  Like, if a patient is missing the chemicals that convert T4 into T3.

OK this is getting too involved. 

At any rate.

1.  Measuring free T4 gives a reasonably useful index of available T4 levels.

2.  Measuring free T3, although the endocrinologists do it frequently, isn't so useful.  This is b/c there is an unpredictable discrepancy between the amount of circulating free T3 in the blood and the amount of T3 in each tissue.  Remember that most T3 is made locally inside tissues by converting T4.

3.  Free T3 measurement is also going to be different throughout the day, b/c it has such a short half-life.  Free T4 is generally consistent throughout the day.

4.  The half-life of T4 is several days, so time of dose isn't so important as the empty stomach.  So, pick a time when it's convenient for you to have an empty stomach (no easy task for diabetics!!)

5.  The half-life of T3 is short, so I would think that if you were going to take a T3 pill, it should be controlled-release or maybe split dosing.


I think the idea behind Rxing T3 and T4 together is to address whatever particular issues might be going on in your particular biochemistry.  To me it seems that T4 makes more sense, allowing the cells to make their own T3.

But that last part is IMHO only!  I'm no endocrinologist.

You sound like you've got a good plan for your treatment.

Do you have a family doc or something who can interpret stuff for you?  I don't know how that works in the States.

--ncc--

[Penny Century]

i know in my blood work up there was something wrong with "reverse T3"?

i seem to have problems turning T4 into T3... it took a long time to figure out.  low T3 is hard to pin down, even though it's more active.  so, my TSH wasn't that off, and my T4 was fine, but when my body temp dropped to 97 and my hair started falling out, we went after looking hard at my T3, which is why i'm on armour, because it has both. (though yes, i know, most ppl find it creepy.)

the arguments for just T4 or T4 and T3 supplementation both make sense... but, for some people, they really need the T3 supplemntation because the body just doesn't always work the way it should.

at least, this is my take on it.

penny

[revlow]

Yup, that's me. Was on T4 alone for over 3 years; didn't do a heck of a lot for me. Finally got to an excellent thyroid specialist who was able to tell what was going on. Put me on Thyrolar. Bingo.

I have Hashimoto’s, for whatever it's worth.

Not that any of this has anything to do with your situation, scream_phoenix.

Good luck. Hope you get it all worked out soon!
revlow

[Fiona]

I take (generic) synthroid, the bottle has a little sticker that says to take it with plenty of water, on an empty stomach, before breakfast (how many people have a full stomach before breakfast? and why?)

So I take it about 6:30AM, along with 30mg Parnate, when my partner leaves for work. I then eat get up and eat breakfast somewhere around 10:00/11:00AM.

It seems to be working fine for me.

Fiona

[scream_phoenix]

i just hate having to wait a whole hour to eat breakfast, because i thought i heard somewhere that if you don't eat breakfast within the first hour of waking up - you lose the effect it would have on getting your metabolism going (could have been college gym class so i don't know about the scientific validity, but it always made sense to me)

i tried taking my thyroid after breakfast yesterday, but it felt like my blood sugar crashed a couple times so i don't know if it all got absorbed - or if i'm still just not at the right dose. i took my pills maybe around ten thirty or so and by eleven thirty or even earlier it felt like my blood sugar was going low, so i had some orange juice and then just decided to eat a lot of food.  i don't know if that decreased the absorption or not.

but by last night i seemed to have completely run out of thyroid after dinner.  i had no appetite, and i was just brain dead.  i drank some coke and that kept me up, so i decided to take my pills at like 3 am.  today my stomach has felt like pure acid though - that might just be the stomach flu though, but its definitely sucked.  i think i'm going to take my pills sometime around the time i plan to eat to see if that makes any difference. 

i meant to write a more intelligible response, but feeling sick today has pretty much sapped me.  but thanks for all the input again.  and all that stuff you wrote above ncc1701 was definitely NOT too involved, i like learning as much as i can.  shortly around the time i had my radioactive iodine and was feeling really wigged out from hypethryodism i thought i'd sit down with the merck's manual section on hyperthyroidism i copied and try to understand thyroid synthesis - and THAT definitely was way over my head, but you learn a little bit each time.  i didn't realize so much thyroid hormone was bound to plasma protein.  how does it come unbound?  just when your cells require it, or is there some sort of chemical process that unbinds it?

i guess i still have a lot to learn, and hopefully if i find a schedule and stick to it, and get to roughly the right thyroid level - my brain will work enough for me to learn it. 

[realitytest]

DON'T take it within hours of calcium!! 

All kinds of things interfere with its absorption and it's often reciprocal (thyroid screws with them too)  Worth googling some as most MDs are not aware of this.

And DO take care not to get too much as it causes bone thinning.

I've been taking Synthroid for three decades since my thyroid conked out very early.
I second about separating out the T3 and T4 though it takes a bit of experimentation to find what ratio and dosage  of each,  works out to the right end  TSH,free thyroxine levels.

[realitytest]

Oops.  Duplicate.

This post has been edited by realitytest: 30 March 2006 - 11:29 AM

[Penny Century]

scream,

two of my AM meds are supposed to be taken before eating (aciphex for my acid reflux, and armour for my thyroid) so what i do is set 2 alarms.  one for 8am to take my meds, and one for 9am to wake me up.  (i also take my adderall at 8 am as it helps me actually get out of bed at 9 am heh.)

don't know if this would work for you, some strange people seem to wake up when the alarm goes off and are UP and couldn't go back to sleep for an hour...

penny

[Zelda]

I was told by my endo that as long as I remembered to take the meds, it really didn't matter if I took them with food or not..... 

I am sure he was aware of the other meds I take and saw that the majority in the AM say "Take with food".

I didn't want to hijack your thread, so I posted my questions in a new thread.

P.S. I WANT MY THYROID BACK TOO!!!!!!!