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Old 12-26-2010, 11:00 PM
 
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Question...

I am on 75mcg of levothyroxine for hypothyroid (meds just increased about 3 weeks ago).

My doc had me alternate my 50mcg and 75mcg dose to transition to the higher dose. During that 14 day period I could tell that I felt MUCH better on the 75's and the days I took the 50's were just awful.

My TSH is in normal range but the increase was made for my T3 and T4 (which were still off normal range and still considered hypo levels).

I have zero interest in food with the increase in dose and some days it's a struggle to eat the calories I need to consume. From most of what I've read the more common side-effect is an increase in appetite although any change in appetite can be considered a normal side-effect.

For those on this med, have you experienced this and if so, will this pass as I get used to the new dosage or is this par for the course with an increase?

I'm on a few supplements already because I was coming up low on Vit. D, B12, folate and iron so I'm hoping not to worsen this. I'd love to get off the supplements eventually but the lack of appetite has me wondering IF that will happen anytime soon.
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Old 12-26-2010, 11:27 PM
 
Location: Mostly in my head
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I wish I had that effect! I've been on it since Jan. as my thyroid was ablated. First on 150 mcgs, then 125 as I lost weight.
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Old 12-27-2010, 08:33 AM
 
Location: In a house
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75 mics is a very low dosage. I take 100 mics, and it's considered a "maintenence" dose - rather than a therapeutic dose. I only have one node out of the pair of thyroid nodes, the first one was surgically removed as the result of a tumor. The remaining node functions perfectly, and can produce the same amount of hormones as the pair did, if I still had both. The maintenence dose is simply so that the remaining node doesn't have to "work overtime," thus risking a nodular burnout along the line (overworked anything will eventually burn out).

On such a low dosage, there should be little to no change in appetite. I would recommend that you try eating healthier foods, in smaller portions, scattered throughout the day. That way you won't feel like you have to stuff yourself to get the nutrition you need. An example:

A half-cup of oatmeal with raisins, butter, brown sugar, and a splash of milk, and a small glass of OJ for breakfast. An hour later, smear some peanutbutter on a couple of ritz crackers for a snack. Afternoon, grilled chicken sliced up over crispy romaine lettuce, tomatos, garlic croutons, sauteed mushrooms, olive oil, oregano, parmasean cheese, and balsamic vinegar for lunch.

An hour later, a wedge of canteloupe.

Suppertime could be maybe, 4 ounces of filet mignon, quartered and wrapped in bacon, a ladel's worth of rice pilaf with mushrooms and peas, a campari tomato, quartered and drizzled with garlic oil over a slice of toasted artisan bread.

An hour later, another slice of that bread..

You'll get calories, nutrition, deliciousness, carbs, fruits and veggies, protein, basically eat like a king. But eat SMALL portions, frequently.
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Old 12-27-2010, 08:40 AM
 
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I wish I had that problem. I am at 200mc/g have been for a couple of years now.

I don't take any supplements. Usually stress has more to do with my interest in food. But I have been eating better the last year too. The weight has maintained. I am more interested in conditioning my body and being active.
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Old 12-27-2010, 09:48 PM
 
Location: 38°14′45″N 122°37′53″W
4,151 posts, read 10,626,649 times
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Quote:
Originally Posted by justthe6ofus View Post
Question...

I am on 75mcg of levothyroxine for hypothyroid (meds just increased about 3 weeks ago).

My doc had me alternate my 50mcg and 75mcg dose to transition to the higher dose. During that 14 day period I could tell that I felt MUCH better on the 75's and the days I took the 50's were just awful.

My TSH is in normal range but the increase was made for my T3 and T4 (which were still off normal range and still considered hypo levels).

I have zero interest in food with the increase in dose and some days it's a struggle to eat the calories I need to consume. From most of what I've read the more common side-effect is an increase in appetite although any change in appetite can be considered a normal side-effect.

For those on this med, have you experienced this and if so, will this pass as I get used to the new dosage or is this par for the course with an increase?

I'm on a few supplements already because I was coming up low on Vit. D, B12, folate and iron so I'm hoping not to worsen this. I'd love to get off the supplements eventually but the lack of appetite has me wondering IF that will happen anytime soon.
Would you please clarify this,( the bolded and underlined above) as Levo is not T3 it is only T4. The way you have it written it just doesn't make sense to me.

I have had a fabulous experience with all of this as I was hyperthryroid and was accidentally put on levo then removed from it. Then had biopsies, no cancer, but needed a total thyroidectomy a a year and a half ago. We've been playing chicken with my TSH levels ever since.

With the Levothyroxine I have been on 175mcg, 150mcg, 100,88 and 75. ( I am currently at 75mcg but have dropped one day a week, which alters the mcg amount as well.

The food issue for me has been all over the place as well, as has the weight gain.

The dosage is also based on your weight, fyi. I have recently lost 47 pounds (all of which was gained after & during Thyroid Disease diagnosis 2 years ago) which is why i am on a seemingly low dose now.

Last edited by bellalunatic; 12-27-2010 at 10:35 PM..
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Old 12-28-2010, 09:42 AM
 
15,724 posts, read 20,267,615 times
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Quote:
Originally Posted by bellalunatic View Post
Would you please clarify this,( the bolded and underlined above) as Levo is not T3 it is only T4. The way you have it written it just doesn't make sense to me.

I have had a fabulous experience with all of this as I was hyperthryroid and was accidentally put on levo then removed from it. Then had biopsies, no cancer, but needed a total thyroidectomy a a year and a half ago. We've been playing chicken with my TSH levels ever since.

With the Levothyroxine I have been on 175mcg, 150mcg, 100,88 and 75. ( I am currently at 75mcg but have dropped one day a week, which alters the mcg amount as well.

The food issue for me has been all over the place as well, as has the weight gain.

The dosage is also based on your weight, fyi. I have recently lost 47 pounds (all of which was gained after & during Thyroid Disease diagnosis 2 years ago) which is why i am on a seemingly low dose now.
Thanks for writing...

the last time I went in for my appt after bloodwork doc said my TSH was in normal range but that he didn't like where my T3 and T4 were so he was going to increase the dose. Maybe the increase was simply for the T4 and I just understood him wrong? He also said something about adding another med (not sure what, he didn't say) but he wanted to see what my levels did after this 6 week period.

You said you dropped a day? Does that mean you don't take the levo one day a week? I was assuming that it does not build up in the system which is why it's recommended to take it at the same time every day? When he does my bloodwork he asked me to fast from meds just for that day so he can get a more accurate result as well so I assumed there no or very low levels left in the bloodstream.

I have been trying to educate myself on all of this because I feel like I'm not in control. I admit it's a lot of information to take in and I haven't had much time to do a lot of reading and even then, I don't know what sources are reliable.
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Old 12-28-2010, 10:07 AM
 
Location: In a house
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When I get my thyroid levels checked, it's to ensure that I am taking the correct dosage of meds. So I'm NOT supposed to fast..and I AM supposed to take the meds on schedule. That's the only way they can tell that I'm taking the right amount. If my levels are low, it means I need more than what I'm already taking. If my levels are high, then I need to take less.

Fasting, with no meds, is the best way to determine your base thyroid function. But you still have to measure "what I'm doing now" with "what is the most efficient." And you can't measure "what I'm doing now" if you abstain from "doing what I normally do."
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Old 12-28-2010, 11:33 AM
 
Location: Mostly in my head
19,856 posts, read 63,050,983 times
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Last blood work, my TSH level was up a bit. So my specialist (in thyroid) told me to continue my regular doses M-Sa but take 1/2 a pill on Sun.
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Old 12-28-2010, 01:58 PM
 
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This is all very interesting. I had been on Levothyroxine 25mcg as a starting dose over a year ago. At that time, my TSH was below borderline low level. Continued to have fatigue, weight gain, and other symptoms of hypothyroidism. In October, Levothyroxine was increased to 100mcg basically because my symptoms and TSH level had not improved. My T3 and T4 have always been within normal range.

I absolutely cannot lose weight, but as of yet, as of yet I haven't had my thyroid tested.

My son had hypothyroidism since he was thirteen. Last year, he had sort of stopped taking his thyroid on his own, and after six months when tested. his thyroid profile was normal. His doc was quite surprised.
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Old 12-28-2010, 10:46 PM
 
Location: 38°14′45″N 122°37′53″W
4,151 posts, read 10,626,649 times
Reputation: 3432
Quote:
Originally Posted by justthe6ofus View Post
Thanks for writing...

the last time I went in for my appt after bloodwork doc said my TSH was in normal range but that he didn't like where my T3 and T4 were so he was going to increase the dose. Maybe the increase was simply for the T4 and I just understood him wrong? He also said something about adding another med (not sure what, he didn't say) but he wanted to see what my levels did after this 6 week period.

You said you dropped a day? Does that mean you don't take the levo one day a week? I was assuming that it does not build up in the system which is why it's recommended to take it at the same time every day? When he does my bloodwork he asked me to fast from meds just for that day so he can get a more accurate result as well so I assumed there no or very low levels left in the bloodstream.

I have been trying to educate myself on all of this because I feel like I'm not in control. I admit it's a lot of information to take in and I haven't had much time to do a lot of reading and even then, I don't know what sources are reliable.
Quote:
Originally Posted by AnonChick View Post
When I get my thyroid levels checked, it's to ensure that I am taking the correct dosage of meds. So I'm NOT supposed to fast..and I AM supposed to take the meds on schedule. That's the only way they can tell that I'm taking the right amount. If my levels are low, it means I need more than what I'm already taking. If my levels are high, then I need to take less.

Fasting, with no meds, is the best way to determine your base thyroid function. But you still have to measure "what I'm doing now" with "what is the most efficient." And you can't measure "what I'm doing now" if you abstain from "doing what I normally do."
Okay, so there's a lot going on here:

It is possible that your doctor, if not an Endocrinologist, is just winging it here. Even my Endo. points that out about himself and other "thyroid specialists" out there, since Thyroid Disease is very specific to each individual.

First of all, the fact that your TSH is in the "normal" range kind of doesn't mean diddly-squat if you are having most of the symptoms of hypothyroidism/hyperthyroidism.

I had the whole spectrum of the symptoms and my regular doc misunderstood the TSH level numbers and put me on the Levo. when I was in fact HYPERthyroid. Big no no. She almost put me into a crazy thyroid storm!

I was SUPER hungry during this time. CRAZY pregnant type hungry when I KNEW i wasn't pregnant. Turns out that's what happens when you load up someone's system with the EXACT OPPOSITE of what their body needs!

i have a friend who's doc really messed her up with the wrong dosage of Levo. she barely ate, but couldn't lose any weight either.

{What ARE your TSH levels? }

Luckily I got in to see the Endo, and he had me stop taking it immediately. Turns out, the symptoms of Thyroid Disease vary but of the 16 or so common symptoms BOTH hyper and hypo SHARE 8 of them!

So my Endo, couldn't fault my regular doc for that one, I mean, sheesh she was the doc who diagnosed me in the first place after a whole team of other "specialists" didn't even THINK to check my neck!

Anyway, so the Endo tells me that the majority of his patients that have thyroid disease end up with levels in the "normal" range which is HUGE, (.4 - 4.0)but they still feel like crap. See also:

What Is a Normal Thyroid Stimulating Hormone - TSH - Level? Thyroid Testing -- What is the normal reference range.

He said the bulk of his TD patients feel good when there TSH is around 1.7

But then again I have a friend who had a total Thyroidectomy back when she was 16 and her Endo keeps her feeling good at 0.0 which is technically OFF the "normal" range, and she's been fine for a few decades now!

So sadly, TD is a very nebulous disease and everyone is different on it. It should be about how you feel along with the TSH numbers, not just what your TSH numbers are.

As for the MCG dosages, they only make the pill is certain sizes so the day I dropped of (now only doing 75mcg 6 days a week) changes my levels a smidge because we are soooo close to getting me to MY normal.

I also take Cytomel which is the T3 drug that your doc may have been talking about. but I've been taking that 7 days a week. We may have to change that at the next 6-8 week mark. We'll see.

I'm sorry to say, but your Doc is wrong and Anonchick is right about the fact that fasting for the blood tests when you've already got the meds in your system is just stupid.

Actually it's downright ignorant of your doc. which makes me think that you should seek out a good Endo.

I never had a base for my levels since I got toxic hyperthroid bascially out of nowhere and was probably sick for almost a year before I was diagnosed.

As for the meds:

The half-life of Levo is 6-8 weeks which is why they don't test earlier than that. If your Doc. is testing you less than 6-8 weeks, run don't walk to an Endo. STAT.
It's useless bloodwork that could really mess you up in the end as it is just basically muddy-ing the waters here.
Cytomel's half-life is much shorter than the Levo, and I have changed my Cytomel mcg's over that past year and a half and I'll tell you that: DAMN you really HIT a wall if you stop taking it for even just a couple of days!


What happened with me post surgery was about 2months afterwards when all the excess thryoid hormone was out of my system, and the 150mcg of Levo filled in my system in it's place, it worked for a few months, then I started to get sicker.

After another 6-8 weeks of trying a higher dose of Levo 175mcg, my Endo. added Cytomel as he believed that my system stopped converting the T4 of the Levo into T3. Not an uncommon problem.
Eversince we added the Cytomel I've started to feel a lot better and I feel the difference of the Cytomel dosage within a week whereas it takes me about a month to feel the improvements/problems with the Levo.
Cytomel mcg's and Levo need to be balanced out with each other, which is why an ENDO. is really important here.
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