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Old 07-08-2008, 06:55 PM
 
Location: San Antonio-Westover Hills
6,878 posts, read 17,809,927 times
Reputation: 5139

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I was diagnosed with Hashimoto's in 2002, right after my wedding. My doc thinks I had it for about 10 years or more undetected. When she diagnosed me, my TSH was 125. It was nuts. I was falling asleep all the time and had gained about 40 lbs in two years.

Since that time, I've been through 3 endos, now on my 4th, all of them refusing Armour Thyroid, all of them steadily increasing my Synthroid. I've just about given up hope.

Meanwhile, my TSH is getting worse--and that is what is freaking me out. My thyroid doesn't seem to be getting better, or should I say the Synthroid isn't holding off the attack very well. I am now on 325mcg, or .325mg. Has anyone here been on that much? Do you think that's kinda nuts? I am worried about bone loss with this much every day!

Does anyone know a doc in Houston that will at least try Armour with me to see if I react better? Dr. Hotze is out--he's too expensive and isn't covered by insurance.

So far I've seen Drs. Gardner, Shipman, and one over at Memorial SW that wasn't worth a hill of beans, I can't even remember her name. The latest is Dr. Jeffrey Brown.

Thanks for any advice, input, etc!
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Old 07-08-2008, 08:20 PM
 
3,191 posts, read 8,034,551 times
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Sorry don't know anyone there. Hate to hear your troubles, these docs not willing to step out of the box! Have you talked to your primary care or GYN docs? They might be more willing to help..maybe?

(also maybe consider a change to Levoxyl, synthroid didn't work for me for some reason)
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Old 07-08-2008, 11:20 PM
 
Location: Spring, Texas
406 posts, read 1,490,560 times
Reputation: 161
Quote:
Originally Posted by Mom2Feebs View Post
I was diagnosed with Hashimoto's in 2002, right after my wedding. My doc thinks I had it for about 10 years or more undetected. When she diagnosed me, my TSH was 125. It was nuts. I was falling asleep all the time and had gained about 40 lbs in two years.

Since that time, I've been through 3 endos, now on my 4th, all of them refusing Armour Thyroid, all of them steadily increasing my Synthroid. I've just about given up hope.

Meanwhile, my TSH is getting worse--and that is what is freaking me out. My thyroid doesn't seem to be getting better, or should I say the Synthroid isn't holding off the attack very well. I am now on 325mcg, or .325mg. Has anyone here been on that much? Do you think that's kinda nuts? I am worried about bone loss with this much every day!

Does anyone know a doc in Houston that will at least try Armour with me to see if I react better? Dr. Hotze is out--he's too expensive and isn't covered by insurance.

So far I've seen Drs. Gardner, Shipman, and one over at Memorial SW that wasn't worth a hill of beans, I can't even remember her name. The latest is Dr. Jeffrey Brown.

Thanks for any advice, input, etc!
I've had Hashimotos for 24 yrs. and basically been on Synthroid .125 for the majority of time. It has worked perfectly for me...the only trouble I've had in the past.... was when ppo/hmo/pos doctors thought they knew better than the original endo. I just refused to let them change my dosage.The original endo I saw (about 24 yrs ago) was named Dr. Brown...I think in the memorial area. Not sure if he is still practicing...he'd be around 63-65'ish by now.

My friend had her thryoid removed entirely and her dosage is lower than yours...how do they justify giving you soo much? I hope they figure out what their doing... Sunny
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Old 07-09-2008, 06:33 AM
 
Location: most beautiful place ever
1,836 posts, read 3,480,736 times
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Have you thought of doing natural remedies? The thyroid thrives on natural iodine, found in kelp/seaweed (supplements), and foods - nuts like walnuts, garlic, pineapples, and artichokes. I'm not saying eating these foods is going to fix it, but if conventional isn't helping, maybe going the natural way will. good luck.
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Old 07-09-2008, 12:34 PM
 
5,273 posts, read 6,394,282 times
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I have been on Synthroid for 20 years. I got it (hypothyroid at 23 years old, right after my dad died). I Was on generic Synthroid at first. BAD. I switched doctors and was much happier. I saw an endocrinologist (a couple)over the years...My primary now adjusts my dosage...

How often do you get it checked? hat is definitely a high dose. I am sorry! I am at the highest at 125 mcg. I was on 75 mcg to start...and had Hashimoto's over the years..

Whatever you do, do NOT just go off of it and take natural remedies! WHile they are good, you have been on medication for years and you don't want to mess with it!

I heard you can get this problem from having children..or if someone is over 65...etc...I had none, I was only 23.

Make sure you go to the same laboratory if you can so the reference ranges are the same. It could vary a great deal going to different labs too. I worked in a hospital and always stuck with the same lab.

Did they ever do a thyroid scan on you?

I am sorry I do not live in TX so I am no help there!but I wish you luck!
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Old 07-09-2008, 03:48 PM
 
12,620 posts, read 17,684,974 times
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I wonder if you need T-3? Also have they checked your B-12 levels? What thyroid tests are they doing on you?
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Old 07-09-2008, 06:07 PM
 
Location: San Antonio-Westover Hills
6,878 posts, read 17,809,927 times
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They've always done T4, T3, Free T4, not sure about Free T3. I have my B-12 checked every year, but it hasn't been checked in 9 months. I wonder if maybe I've got a prob with that.
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Old 07-09-2008, 07:26 PM
 
5,273 posts, read 6,394,282 times
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Usually only a TSH is what they really base the Synthroid or any other thyroid med on...not usually the T3, FTI OR T4.....almost always the TSH to monitor your medication. Ive worked in medical laboratories and EVERYONE gets the tsh!
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Old 07-09-2008, 07:55 PM
 
12,620 posts, read 17,684,974 times
Reputation: 2988
Quote:
Originally Posted by Mom2Feebs View Post
They've always done T4, T3, Free T4, not sure about Free T3.
I have my B-12 checked every year, but it hasn't been checked in 9 months. I wonder if maybe I've got a prob with that.
I take T-3 and B-12 shots along with levoxyl. Maybe switching brands would help Synthyroid did not mesh with me. So that is a thought...

How to Interpret Your Thyroid Test Results


Thyroid Testing and Diagnosis

T3: Test Sample

Thyroid Antibodies: At a Glance

Thyroid Function Tests: Normal Ranges.
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Old 08-21-2008, 03:14 PM
 
Location: Alexandria, VA
10,713 posts, read 19,040,812 times
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I'm glad I did a search on Synthroid - thanks for the links Milborn. Interesting that they lowered the TSH levels - I had my thyroid "zapped" w/radiation as a teen (it was overactive then) - since: I was on Synthroid for awhile, then somehow got off it. About 8-10 yrs. ago I had some symptoms and also some nodules on my thyroid - I saw an Endo. and have been seeing him since. I've been on .88 since I can remember but after my last bloodtest, office called to come back in a month, he might want to lower it.

From what I can find research, I think I am taking too high a dosage: I feel hot most of the time, don't sleep well, often have night sweats. I already went through the meno. thing early (thyroid can bring that on early, started in my 30's) - haven't had the hot flashes/night sweats from that for yrs. I'm more tired (I have Fibro. so it's hard to tell), skin is dry, seems like I lose alot of hair (thankfully, it's fine but I have alot of hair). I can't get to docs. until next week one day to retest.

BTW, I never had any weight issues: I'm almost exactly 5' and weigh between 95 and 100. When I graduated high school, I weighed 75 lbs. so I was underweight then.

I know I have some symptoms of over and underactive - any thoughts on that it is probably too high a dosage now?

Quote:
Originally Posted by Miborn View Post
I take T-3 and B-12 shots along with levoxyl. Maybe switching brands would help Synthyroid did not mesh with me. So that is a thought...

How to Interpret Your Thyroid Test Results


Thyroid Testing and Diagnosis

T3: Test Sample

Thyroid Antibodies: At a Glance

Thyroid Function Tests: Normal Ranges.
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