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Old 02-12-2013, 07:20 PM   #16
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Re: what about hashi's with TSI?

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Originally Posted by trisbee View Post
One important thing to remember is that with hashi, you have developed TPOs. You can get to euthyroid state, but chances are, you will be constantly fighting to stay there, because your immune system has already turned against your thyroid tissue. That cant be reversed. This is how my endo explained it to me and it made sense. Total supression and regulating quickly to one strength is most often the course of treatment that works.
well, im on 50 mcg of synthroid. And, am getting my labs drawn every 6 weeks. i went from 25 to 37 to 50 in a course of 4 months!! ive been going up every 12.5 mcg increments because i was told to go slow!! is this right? or sound right?

 
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Old 02-12-2013, 07:27 PM   #17
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Re: what about hashi's with TSI?

What was your last tsh and free t4?

 
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Old 02-12-2013, 07:47 PM   #18
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Re: what about hashi's with TSI?

I am only my own medical expert. So i am speaking only from my experience, research and what worked for me. After having been on levo for so long and making the decision to seek out an endo, i was very sick. I had a goiter (swollen thyroid) that wrapped halfway around the right side of my neck and about half of that on the left side. My endo informed me i had been severely undertreated by the gp with low dose increases. Said had i gone to him initially he would have started me at about 75mcgs and gone from there with suppression.

 
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Old 02-12-2013, 08:28 PM   #19
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Re: what about hashi's with TSI?

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I am only my own medical expert. So i am speaking only from my experience, research and what worked for me. After having been on levo for so long and making the decision to seek out an endo, i was very sick. I had a goiter (swollen thyroid) that wrapped halfway around the right side of my neck and about half of that on the left side. My endo informed me i had been severely undertreated by the gp with low dose increases. Said had i gone to him initially he would have started me at about 75mcgs and gone from there with suppression.
yikes ! do you still have a thyroid? i still have mine. u/s showed a mildly enlarged thyroid indicative of hashis. no nodules. Im sure i am undertreated right now.
my latest results from last month:
tsh 1.13 (0.3-3)
free t4 0.95 (0.58-1.64)
free t3 3.15 (2.5-3.9)
reverse t3 364 (90-350)

my labs have always been within the ranges since starting on synthroid back in october. Never had a tsh out of range.

 
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Old 02-13-2013, 07:10 AM   #20
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Re: what about hashi's with TSI?

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Originally Posted by fresnogirl View Post
how do you achieve that? or how have you achieved that? My endo is clueless and I'm looking to find another doctor who's got a clue!\

-- just saw your post above the last post!
I started out on 50 mcgs, but had adrenal issues in addition to the thyroid issues. As a result when my md tried stepping me up in 25 mcgs steps, it lit me up so to speak.

Her practice tries 25 mcg or even 50 mcg steps until you are 50% of normal range and the. Depending on your symptoms they step you up or back by 12.5 mcgs. Everyone is different. Our body chemistries are far from identical. As a result we need to listen to what our bodies are telling us... Through symptoms. And adjust at a rate out symptoms are comfortable with.

Once my adrenals were under control I went from 50 mcgs to 112 with in 10 weeks. That was fine for me then.. Over the years my thyroid has finally retired and I sit between 175 mcgs and 150 mcgs depending on what is up with my system. What you need changes even when your thyroid is removed, I do not believe in not checking your levels once a year or every 6 months because I optimized. You have to make sure you stay there. I test a minimum of 4 times a year now. I tweak my results accordingly.

Good luck, it is a quest to find your optimal thyroid levels. Sometimes you feel just like Indiana Jones!

Sincerely,
MG
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Old 02-13-2013, 12:20 PM   #21
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Re: what about hashi's with TSI?

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Originally Posted by mkgbrook View Post
I started out on 50 mcgs, but had adrenal issues in addition to the thyroid issues. As a result when my md tried stepping me up in 25 mcgs steps, it lit me up so to speak.

Her practice tries 25 mcg or even 50 mcg steps until you are 50% of normal range and the. Depending on your symptoms they step you up or back by 12.5 mcgs. Everyone is different. Our body chemistries are far from identical. As a result we need to listen to what our bodies are telling us... Through symptoms. And adjust at a rate out symptoms are comfortable with.

Once my adrenals were under control I went from 50 mcgs to 112 with in 10 weeks. That was fine for me then.. Over the years my thyroid has finally retired and I sit between 175 mcgs and 150 mcgs depending on what is up with my system. What you need changes even when your thyroid is removed, I do not believe in not checking your levels once a year or every 6 months because I optimized. You have to make sure you stay there. I test a minimum of 4 times a year now. I tweak my results accordingly.

Good luck, it is a quest to find your optimal thyroid levels. Sometimes you feel just like Indiana Jones!

Sincerely,
MG
mgkbrook,
thank you for your reply! I appreciate it so much. depending on my next blood work, i PLAN on upping another 12.5mcg but we will see. and also, not too sure when im gonna need t3 since its too early to tell. how are your adrenals doing now? did u have to supplement with HC? or did u take adrenal support pills (herbs) instead?

 
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Old 02-13-2013, 01:15 PM   #22
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Re: what about hashi's with TSI?

My adrenals can not put out sufficient cortisol any more. I am literally taking 20 MG of hydrocortisone tablets a day. If I miss a dose I literally can not stay awake and function. Unfortunately too many clueless MDs kicked me around and did not treat my thyroid when it needed.. The end result my adrenal function was permanently compromised. There are dangers to treating any condition, many MDs feel it is better to keep us hypot. That is not the case, think of other forms of deprivation... Starvation, dehydration. Too much and too little is bad with pretty much all things health wise. Hypothyroidism is you living in a state of metabolic starvation. Eventually things give up the ghost.

MG
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Old 02-13-2013, 01:28 PM   #23
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Re: what about hashi's with TSI?

Quote:
Originally Posted by mkgbrook View Post
My adrenals can not put out sufficient cortisol any more. I am literally taking 20 MG of hydrocortisone tablets a day. If I miss a dose I literally can not stay awake and function. Unfortunately too many clueless MDs kicked me around and did not treat my thyroid when it needed.. The end result my adrenal function was permanently compromised. There are dangers to treating any condition, many MDs feel it is better to keep us hypot. That is not the case, think of other forms of deprivation... Starvation, dehydration. Too much and too little is bad with pretty much all things health wise. Hypothyroidism is you living in a state of metabolic starvation. Eventually things give up the ghost.

MG
mg, how did u find out you were putting out any more cortisol anymore? via blood or saliva test? im sorry about that, but glad you are feeling better.

 
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Old 02-13-2013, 02:15 PM   #24
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Re: what about hashi's with TSI?

I still make some cortisol. But I am 0-5% of normal range versus the recommended 50-80%. For confirmation I had many blood draws in addition to a 24 hour saliva and urine cortisol profile. saliva is most accurate, but many do not know how to read it. In addition I had an adrenal stress test which showed barely a response to the adrenal stimulation that makes a normal functioning individual feel like they will climb out of their skin. One test alone is not definitive. You have to have supporting tests and symptoms. Adrenals are more complex than thyroids. There are a dozens of issues that can manifest in similar symptom sets. Thanks for your regards, I hope this helps.
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Old 02-13-2013, 05:53 PM   #25
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Re: what about hashi's with TSI?

My thyroid is back to normal size, maybe even a little shrunken, which is fine with me after what I went through, but that is what suppression does. I would be happy if it wasn't there, then I would be able to find a perfect dose of levo and not have to worry too much. Your labs looked good, but hashi and hypo are different for everyone. If you feel like you are undertreated, and you hare having symptoms that affect your way of living, then there is no reason you shouldn't seek out additional help. One thing about tsh and t levels I've learned through my research (I have read every book, medical reference, etc. I could get my hands on since my diagnosis) is that everyone has their own levels that make them feel okay. Some are okay with TSH of 5, while others do great at .5 and almost hyper. It just depends on where your body feels good. Another thing to consider is the anxiety that is not only caused by the disease, but as an effect of the levo. Low dose anxiety meds such as buspirone, may help with the very physical effects of the meds and the disease. Anxiety is very common in hashi patients, even if they don't realize it.

 
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Old 02-13-2013, 07:29 PM   #26
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Re: what about hashi's with TSI?

Quote:
Originally Posted by trisbee View Post
My thyroid is back to normal size, maybe even a little shrunken, which is fine with me after what I went through, but that is what suppression does. I would be happy if it wasn't there, then I would be able to find a perfect dose of levo and not have to worry too much. Your labs looked good, but hashi and hypo are different for everyone. If you feel like you are undertreated, and you hare having symptoms that affect your way of living, then there is no reason you shouldn't seek out additional help. One thing about tsh and t levels I've learned through my research (I have read every book, medical reference, etc. I could get my hands on since my diagnosis) is that everyone has their own levels that make them feel okay. Some are okay with TSH of 5, while others do great at .5 and almost hyper. It just depends on where your body feels good. Another thing to consider is the anxiety that is not only caused by the disease, but as an effect of the levo. Low dose anxiety meds such as buspirone, may help with the very physical effects of the meds and the disease. Anxiety is very common in hashi patients, even if they don't realize it.
i didnt read back on the last posts but i recall you are on synthroid 112 mcg correct? i HONESTLY think the reason i still feel hypo is because i just got on a starter dose of 50 mcg of synthroid. before that i was on 37, then before that i was on 25mcg. Still hypo. still achy. still fatigued. and i could literally sleep 13 hours and still feel exhausted. my ferritin is normal at 70. my b12 is 700. my cortisol via saliva and blood are normal. I cant think of any other things that could be giving symptoms than my thyroid alone. I just need mroe time to let the synthroid build, then my body will judge if the dose that i'm at is optimal (for me). and also, idk if they go by reverse t3 anymore. but many have said i feel hypo because my rt3 was HIGH 364 (90-350).

 
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Old 02-13-2013, 08:13 PM   #27
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Re: what about hashi's with TSI?

The high rt3 could be an issue for you then. Your tsh is on the high end of normal and your t4 is on the low end of normal. High rt3 could mean your body is not reserving enough t4 to convert to active t3 hormone. This can lead to exxasebated symptoms, because your extra supply of t4 is not being reserved for when your body needs it. Again, common in hashi, and another reason to consider when deciding how much to raise your dosage.

 
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Old 02-13-2013, 11:28 PM   #28
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Re: what about hashi's with TSI?

Quote:
Originally Posted by trisbee View Post
The high rt3 could be an issue for you then. Your tsh is on the high end of normal and your t4 is on the low end of normal. High rt3 could mean your body is not reserving enough t4 to convert to active t3 hormone. This can lead to exxasebated symptoms, because your extra supply of t4 is not being reserved for when your body needs it. Again, common in hashi, and another reason to consider when deciding how much to raise your dosage.

trisbee,
in your honest opinion, what do you suggest i do regarding my
high rt3? I get different answers every time i ask this question. I get either try combo of t3/t4 to help clear the excessive rt3 OR Stick to synthroid and up meds after every blood draw (even though it would drive my rt3 even higher with the excess t4 in my synthroid) SO CONFUSING!!

 
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Old 02-14-2013, 06:53 PM   #29
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Re: what about hashi's with TSI?

Hi MG!
Just thought I'd let you know that I got the MRI. I didn't think I was going to at first, but what the heck, why not check out the pituitary and be sure. You know what? No pituitary problems seen. Funny thing is, I think my endo has been convinced from the beginning that my symptoms must be from something, ANYTHING but my thyroid. Never once have I complained of the typical complaints usually thought of as hypo. I'm always complaining of things like tachycardia,heart palps, dizziness, headaches, sensitivity to light (eyes) and panic attacks. I'm thin by the way and not naturally prone to be a worrier, nor never had headaches before. He worked me up for a pheochromocytoma a few months back.....didn't have that either .

Starting to look more and more like I probably just have a really stupid thyroid. Just FYI, I was doing some research regarding the TSI and I came across two different publications (older, but from AJM) talking about a few unusual cases of Graves disease that presented itself with euthyroid or even hypothyroid labs. How interesting! Especially since TPO is not specific to Hashi's, even though it is present in many Hashi's pt's. It's also present many times in Graves. Things that make me go, hmmmm.

 
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Old 02-14-2013, 07:02 PM   #30
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Re: what about hashi's with TSI?

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Hi MG!
Just thought I'd let you know that I got the MRI. I didn't think I was going to at first, but what the heck, why not check out the pituitary and be sure. You know what? No pituitary problems seen. Funny thing is, I think my endo has been convinced from the beginning that my symptoms must be from something, ANYTHING but my thyroid. Never once have I complained of the typical complaints usually thought of as hypo. I'm always complaining of things like tachycardia,heart palps, dizziness, headaches, sensitivity to light (eyes) and panic attacks. I'm thin by the way and not naturally prone to be a worrier, nor never had headaches before. He worked me up for a pheochromocytoma a few months back.....didn't have that either .

Starting to look more and more like I probably just have a really stupid thyroid. Just FYI, I was doing some research regarding the TSI and I came across two different publications (older, but from AJM) talking about a few unusual cases of Graves disease that presented itself with euthyroid or even hypothyroid labs. How interesting! Especially since TPO is not specific to Hashi's, even though it is present in many Hashi's pt's. It's also present many times in Graves. Things that make me go, hmmmm.
I have TSI and and TPO antibodies as well. Feeling very hypo. no tachycardia, panic attacks, heart palps or dizziness though. So, you do have graves disease? and what other autoimmune conditions can be specific to TPO other than hashimotos?

 
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