Thyroid tests are normal?? Are you sure?

[PalmTreeGal]

You are so right, Niki.

My aunt lives in the city where I used to work ICU. She had Graves and had her thyroid knocked out. She sees the one local endo who refused to give her T3 for years but now does. She (the endo) was kind of witchy to me in the ICU. She told my aunt "My diabetic patients are easy, but you thyroid patients are all hard!" My aunt said her internal response to that was "Maybe because you're not medicating them right!" The endo is lacking personality AND thyroid skills. And diabetic patients are by no means "easy" so I don't know what planet she's on!

[olsufka2]

I hope someone responds to my post on the following page as tomorrow is the first day I am to stop the Levothyroxine cold turkey. Any input????

[Lilgrnize]

olsufka, I don't know what FT4 equilibrium dialysis is, but your ft4 is still under the range. If it were me, I would certainly do more research before just stopping my meds. Actually, if it were me, I'd think he was fulluvit and look for another doctor, but that's just me. Hopefully Pam will check in and have a good answer to your question. I'd probably wait to see what she has to say. I don't think one day is going to make that much difference.

[inatic]

Originally Posted by olsufka2

I hope someone responds to my post on the following page as tomorrow is the first day I am to stop the Levothyroxine cold turkey. Any input????

the only thing you need to do is get a doctectomy! Your undermedicated. I'd stay on your meds and find a new dr!

I've never heard of that dialysis thing and i've been following pam around now for yrs! You can test all the tests you suggested without withdrawing you from meds as all of our drs do, medicated.

Tsh can vary thru out the day and your FT4 is still low. not even in range. He didnt do an ft3, so you dont even know IF your converting any of the T4.

[nonstickpam107]

Originally Posted by Lilgrnize

For those of you who have a doc telling you that Armour is unstable as a reason not to rx it, do some research...find out how many times in history Armour has been recalled, and find out how many times the synthetic t4's - especially - have been recalled. Take the results of that research back to the doctor who's trying to blow smoke up your butt...then fire him.

Mandy, don't forget to call your local pharmacies and ask them for the names of docs who rx Armour...even if you don't need armour, most of the docs that rx it run the right labs and monitor the free t levels.

AMEN!! And go google: "Synthroid lawsuit" and read THAT too.

Pam

[nonstickpam107]

Originally Posted by Lilgrnize

olsufka, I don't know what FT4 equilibrium dialysis is, but your ft4 is still under the range. If it were me, I would certainly do more research before just stopping my meds. Actually, if it were me, I'd think he was fulluvit and look for another doctor, but that's just me. Hopefully Pam will check in and have a good answer to your question. I'd probably wait to see what she has to say. I don't think one day is going to make that much difference.

I have the same opinion.

Pam

[nonstickpam107]

Originally Posted by inatic

the only thing you need to do is get a doctectomy! Your undermedicated. I'd stay on your meds and find a new dr!

I've never heard of that dialysis thing and i've been following pam around now for yrs! You can test all the tests you suggested without withdrawing you from meds as all of our drs do, medicated.

Tsh can vary thru out the day and your FT4 is still low. not even in range. He didnt do an ft3, so you dont even know IF your converting any of the T4.

You're so smart girl!! I totally agree.

Goodness. I went to an endo once who didn't know thyroid (there were thousands to pick from, none of them did thyroid ) and he said "Once you are on the T4 for awhile, if your FT4 goes UP I take you back OFF of it".

So, I said: 'Then, doctor, do you have diabetic patients too?' He replied: "Yes, many of them". So, I inquired, "So, you put your diabetic patients on insulin?" He said "Yes, most of them". To which I said: "Then you take it BACK off of them for a few days and the ones who don't die are A-ok?" He made me leave the office.

Pam

[Lilgrnize]

Pam, what is it with you and me and doctors? I've had two quit returning my calls, and two tell me I needed to find another doctor. They just don't appreciate our inquisitive minds and sharp sense of humor, huh?

[nonstickpam107]

That must be it...and their eyes glaze over at just the MENTION of the product 'nonstick pam' (in this area anyway). ?? What's THAT about??!! LOL

MY doctor, on the other hand, LOVES to sit and shoot the medical/thyroid breeze. I tell him new findings, he tells me new (and old stuff..he's a real 'outcast' amongst the doctors in town who are all about money and removing thyroids...lol). And I've been at this advocation stuff for over 22 years now, first a medical researcher (endocrine studies) for ten years, then as an advocate for the rest...and I'm seeing a difference now. It's slow, but it's sure. I'll be in a store and people walk up to me and one said "I've just gotten my NP and I'm all for doing the right tests for thyroid and using natural thyroid". Wow!

Yeah, there's a 'new breed' of medical personnel and doctors coming up..they aren't going to just take what someone wrote in a book 100 years ago as 'gospel'. They are hungry to learn and they are hungry to 'first do no harm' and to actually make the patient feel BETTER instead of chasing down good ol' boy tactics. I hope we all are able to make the world a better place to be treated in.

Pam

[inatic]

Originally Posted by Lilgrnize

Pam, what is it with you and me and doctors? I've had two quit returning my calls, and two tell me I needed to find another doctor. They just don't appreciate our inquisitive minds and sharp sense of humor, huh?

Im so thankful for atleast my thyoid care, i have two drs that love to talk with me. My X-gyn on the other hand fired me because i asked too many questions and question HER knowlegde. Shame, she was a good gyn, just didnt care for her ideas on hormone treatment.

[olsufka2]

Oh my gosh you guys have never heard of the FT4 equilibrium dialysis test???? Yikes, I just dont know what to think here. Yeah, why cant he just run the FT3 right now and see what it is. Does taking the levothyroxine for one month really make a difference in knowing if I am converting or not?? And I know all the other tests are to see if I have any antibodies ( Hashimotos, Graves...) and I am sure I can have them tests done while still on the medication. I really dont want to quit taking it - I have noticed a difference in just the month that I have been on it. I think he is concerned about people taking it that really dont need it because of the cardiac effects. Hum, I wonder if I can just have all of the anitbody tests done first before quiting it to make sure I dont have Hashimotos. What do you guys think. YOU ARE SOOOOO HELPFUL!!!!!

[inatic]

please..
im taking way.................. more than that (rightfully so) and there are no cardio effects in someone needing to be medicated as your labs prove. The cardio effects come in with abuse or OVER medicating, which clearly isnt your problem.

You arent going to get anywhere with that doc.

[olsufka2]

ok I took my levo. this morning anyway and called the endos office and asked if I could have all of the antibody testing done before going off the medication. I told my endos nurse if the tests all come back negative I will go off the medication for two mos. to have the FT4 equilibrium, FT3 and TSH redone. My endo said that is fine, he just wanted to spare me a needle poke.
He does not think in the least that I could have any antibodies and that when I have the FT4 equilibrium dialysis test done it will show that my thyroid is perfectly normal. So, we'll see. I am going this afternoon to get all of the antibody tests done and staying on the Levo until the results come in. If they would all happen to be normal then there is little chance there is actually something wrong with my thyroid right? And he would probably be right. So, now its just a waiting game. Thanks for that bit of info. about thyroid medication abuse. That makes sense. That is crazy, people used to do that. But, he should know my case is quite different. I am starting to think this guy is a little nutty.

[nonstickpam107]

I'm starting to think he's a little nutty too. Sorry. Just because you don't have the autoimmune variety of hypothyroidism doesn't mean you don't have it. Secondly, it is the Free T4 and Free T3 tests that 'show' if you 'need' T4 and T3 hormone replacement. And he won't do those tests. The test he is talking about deals ONLY with T4, and is very old...and AGAIN, ONLY deals with T4. We all KNOW we need T3 if it is low. We all KNOW TSH is a pituitary test. Here is a doctor who is trying his BEST to do nothing and get paid for it. My goodness.

ETA: Ok, I just called my endo's NP..and she wants to know 'how far along' in your pregnancy are you? (They do the test he is suggesting in PREGNANT women they aren't SURE are hypothyroid and use it to determine if the PREGNANT mother and fetus really NEED beginning hypothyroid treatment.

Pam

[olsufka2]

Thanks for your reply Pam. He is actually going to check my T3 and the old T4 test and TSH all together after I have been off the levothyroxine for 2 mos. that is if all of my antibody tests come back negative. So, the FT4 equilibrium dialysis test is an old test for testing FT4? He said it is the only acurate one for FT4. Well, then why dont Drs just use it instead? I think I may have a problem with this endo. I would bet I end up firing him for just what you said DOING NOTHING!!!!!!!!!!!!!! My goodness, my FT4 is low so I take a starting dose of levo. and see improvement in symptoms already. I dont think I'm willing to give that up. Can you tell me a little bit about the FT4 equilibrium dialysis test??? Thanks a ton!!!

[PalmTreeGal]

I am so confused now, don't know what to do!

I talked to Dr. Dicke's office, he is the only local endo. The receptionist was a blathering idiot and said Dr. Dicke would not speak to me by phone before my new pt appointment. I asked her about labs and T3 supplementation and she didn't know what I was talking about. I made an appointment for Sept and begged her to give him the message that he should speak to me by phone before the appt so as not to waste his time or mine. In retrospect I should have asked to speak with his nurse, s/he would at least have known what I was talking about.

So then I called my PCP's office. I had explosive diarrhea this morning which I am sure is due to the levothyroxine. I told her about it and asked why I was started on such a high dose. She said endos typically start people HIGHER and that since I am young and have no cardiac issues it should not be a problem. She told me to split the pills in half for a week and then go back to a full tab. She said that with thyroid meds you can adjust them to how you feel. (does that mean I should adjust my own meds?) I asked her then about taking T3 and she said she has some patients on Armour and some do feel better on it. Then she asked me if I wanted to try it! I was blown away. I said I don't know, I'll think about it.

So now - basically I seem to have a doctor who will let me self-treat, will prescribe what I want and probably run whatever labs I want. Is this a GOOD thing? Especially given that there aren't experienced thyroid docs available locally?

[nonstickpam107]

Originally Posted by olsufka2

Thanks for your reply Pam. He is actually going to check my T3 and the old T4 test and TSH all together after I have been off the levothyroxine for 2 mos. that is if all of my antibody tests come back negative. So, the FT4 equilibrium dialysis test is an old test for testing FT4? He said it is the only acurate one for FT4. Well, then why dont Drs just use it instead? I think I may have a problem with this endo. I would bet I end up firing him for just what you said DOING NOTHING!!!!!!!!!!!!!! My goodness, my FT4 is low so I take a starting dose of levo. and see improvement in symptoms already. I dont think I'm willing to give that up. Can you tell me a little bit about the FT4 equilibrium dialysis test??? Thanks a ton!!!

It's done on PREGNANT WOMEN. How far along are you in your pregnancy? There is NO other reason to do it except if you are PREGNANT. You have a doctor who is a TSH worshipper. He's not EVER going to give ANY patient the T3 they need, He goes by TSH alone, he doesn't understand what to do with a FT4 that is where it SHOULD be. Dang skippy you have a problem with this endo..cuz it's an ENDO. I went through FIVE endo's and finally the last one decided 'maybe' he'd give me a little T4 if I oooh'ed and ahhhh'd over how smart and wonderful he was. Five DAYS later I was in the ICU with myxedema COMA (from lack of thyroid hormone...my tests were 'just fine and dandy and normal uh huh' according to the previous five ENDO's I'd seen).

Stop trying to make yourself 'see the light' here, this is not YOUR problem it is the doctor who is making a fool of himself. It's not you who are 'wrong'. Now go to a doctor who is known for using Armour Thyroid and not just synthetic T4, that's your best bet for good treatment.

Pam

[nonstickpam107]

Originally Posted by PalmTreeGal

I am so confused now, don't know what to do!

I talked to Dr. Dicke's office, he is the only local endo. The receptionist was a blathering idiot and said Dr. Dicke would not speak to me by phone before my new pt appointment. I asked her about labs and T3 supplementation and she didn't know what I was talking about. I made an appointment for Sept and begged her to give him the message that he should speak to me by phone before the appt so as not to waste his time or mine. In retrospect I should have asked to speak with his nurse, s/he would at least have known what I was talking about.

So then I called my PCP's office. I had explosive diarrhea this morning which I am sure is due to the levothyroxine. I told her about it and asked why I was started on such a high dose. She said endos typically start people HIGHER and that since I am young and have no cardiac issues it should not be a problem. She told me to split the pills in half for a week and then go back to a full tab. She said that with thyroid meds you can adjust them to how you feel. (does that mean I should adjust my own meds?) I asked her then about taking T3 and she said she has some patients on Armour and some do feel better on it. Then she asked me if I wanted to try it! I was blown away. I said I don't know, I'll think about it.

So now - basically I seem to have a doctor who will let me self-treat, will prescribe what I want and probably run whatever labs I want. Is this a GOOD thing? Especially given that there aren't experienced thyroid docs available locally?

Sounds like the same thing as giving a loaded pistol to a three year old. She's wrong of course, and explosive diahrea is a symptom of OVER treatment with T4.

Pam

[PalmTreeGal]

Thanks Pam!

[nonstickpam107]

olsufka..and I forgot to add: Veterinarians use that test on dogs. I double checked through medical research papers and could find NO doctor who was using the equilibrium dialysis test...until I read through the GYN and OBGYN papers. It really IS used to assess pregnant patients. All other patients are 'assessed' using Free T4 and Free T3 and TPO (or TSI) antibodies.

Pam

[nonstickpam107]

Originally Posted by PalmTreeGal

Thanks Pam!

And I'd sure say 'Yes, I want Armour', lol. At least then if you switched docs, the next doc would keep you ON the Armour (well, most of the good ones would, anyway).

Pam

[PalmTreeGal]

Yes, I think I am going to have her switch me to Armour. She wants to redo my TSH in August; at that point I will also request FT3, FT4 and ferritin.

Pam what do you think about this website: Stop The Thyroid Madness

It seems to support a lot of the stuff you talk about.

[nonstickpam107]

Janie (owner of that website) has been a thyroid patient advocate for a long time. She was in several of the same groups I was 10 years or so ago. Then, being a disabled person, I chose to do more 'one on one' advocation (with most of the other thyroid patient advocates proclaiming me not only physically disabled but just totally nuts, lol).. LOL

And if you like that website, check out this one (Gail is also an awesome thyroid patient advocate!):

Gail’s Thyroid Tips

If doctors and medical practitioners, nurses, etc. were all taught the basics for thyroid disease and treatment....we thyroid patient advocates could all go take a nice long nap. (Can't tell I'm tired today, huh??).

Pam

[CrzyCatLady]

I got my results back.

Thyroid peroxidase antibodies 185 according to my paper it should be <35

T4 Free 1.3

TSH 4.25

My doc says it's OK for now. But I'm a little concerned with the TPA number being that high. I'm just looking for any opinions on it. Any advise would be great!



ETA TPA 185 <35
T4 Free 1.3 .8-1.8
TSH 4.25 .40-4.5

I posted this in the main lobby but Lisabinil directed me to here. I'm just wondering what you might think.

[PalmTreeGal]

Pam. both websites are great. I am getting so overwhelmed with all this, the stuff about adrenals and the million ways to dose and mix/match the various kinds of meds. I can't imagine how a non-medical person would cope. Plus the challenge of finding a doc. And weaning off Cymbalta because it is possibly making me fat and definitely making me pee three times a night. So glad to have experienced thyroid people around to guide me.

I wish someone would write a book about thyroid like Good Calories/Bad Calories. Really well-researched and scientifically impeccable. Then we could make our docs read it and have all the studies in one place and maybe they would get it!

[nonstickpam107]

Jenn, any elevation in TPO (what you are saying is TPA, same thing) means you have Hashimoto's. The antibodies will attack and destroy the thyroid, your TSH would be way too high for me, and the doc didn't even CARE ENOUGH to test your T3 (that T4 can be pretty high, but the first thing that happens is you can convert the T4 into T3, that's WHY they do a T3 test).

I started with Hashimoto's, and one doc said "When your TSH is a ten and you've gained over 50 lbs., come and see me" ..and now I have FIVE autoimmune diseases because of no starting care for the elevated TPO. Also, your TSH is much higher than what I feel comfortable at (most 'normal' women have a TSH of around a 1).

So, you clearly have an autoimmune disease...and that doctor clearly doesn't CARE?? Goodness. I'd want to see a doctor who treat Hashimoto's....with Armour Thyroid if possible, because Armour is natural

After seeing an elevated TPO, saying 'it's OK for now' is kind of like seeing a positive pregnancy test and saying 'you're only a LITTLE pregnant, so no care is necessary'. KWIM?

You might want to go to yahoo and go to yahoo groups, put in 'Kentucky thyroid support group' and maybe ask there what's a good doctor who gives Armour (keep in mind a 'good thyroid doc' doesn't say 'I only do TSH').

Pam