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Old 06-12-2013, 11:47 AM   #1
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I don't wanna!

Hi everyone,

I'm frustrated.

I was on 88mcg levothyroxine for years, ran out about 6 mos ago and decided to quit taking them because 1) I didn't feel any different or that it was doing anything and 2) my hair was falling out, A LOT, and 3) I don't want to take so many medications anymore.

Yesterday's blood results:

Free T3 2.47 ("low") (range 2.50-3.90)
Free T4 .87 ("normal") (range .61-1.12)
TSH 7/81 ("high") (range .34-5.60)

I have PCOS. Always have, always will, and don't care to do anything about it. To me it just means more medical appointments, more money, and more trouble than I want to deal with. I'm positive my thyroid and whole endochrine system is jacked because of it, always has been, all my life. It's just the way my body is.

My mom and sister have thyroid issues too so at what point to we just say it's genetic and our ranges are 'normal' for us? Same with glucose levels. Mine never change (103. "Normal" is 65-99 and they label me "pre-diabetic" since I was young and fit and ate right! It's annoying)

Dr put in 50 mcg of thyroid medicine (didn't say what kind). I don't want to take it. Especially if it's the same stuff that's making my hair fall out.

What are the physical consequences if I DON'T take the medication?

I'm taking Provastatin for cholesterol, Metformin for the PCOS (I'm not insulin resistant though and it has not helped in any way with the glucose levels. Only thing it's helped with is ovulation which I don't even need anymore and if I get a job I'm going to quit taking them because they mess up my intestines almost every day), Losartan for high bp, and Prilosec.

If I'm being stupid for not wanting to take the levothyroxine feel free to tell me that. I just know that MY levels have always been this way and if they've always been this way then wouldn't they be MY normal? And why would she give me less than what I was on before?? And I find it strange that my menstrual cycles in the last 6 months have been better off of the Levothyroxine than they've ever been while on it.

So, tell me how it is and what you think please! I appreciate it.
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Old 06-12-2013, 04:39 PM   #2
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Wow. Yanno, in order for the incoming T4 to work (that's what you've been taking JUST T4) it has to 'convert' in to T3. You have no T3 at all (that's the 'feel good, lots of energy, hair growth, yeeha' part of the Thyroid hormones).

You just need a better doctor. Ask to go on Armour Thyroid OR have Cytomel ADDED to your T4. And you need a 'refresher course' in what thyroid hormone DOES in the body! Stop the thyroid madness....just put that in search..go and study.
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Old 06-12-2013, 09:06 PM   #3
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the 'incoming' T4 would be the levothyroxine? And yes, I am trying to understand it all. It just seems SO confusing and exhausting to read over. Add the PCOS crap on top of that and I'm screwed. :P lol

The reason why Dr. put me on the Levo in the first place was to give me more "feel good" and "energy". It hasn't done anything except make me lose hair. Oh, and reduce the TSH (or does that have nothing to do with it?). Previous lab work # on that was in normal range as were the other numbers. I even had the radioactive imaging done and the range was "normal" though on the lower side and that was 9 yrs ago.

Thanks
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Old 06-12-2013, 10:11 PM   #4
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Yep. She scripted me 50mcg of Levothyroxine. Ok. Maybe it lowers my TSH to put it within normal range but I want my hair in my head, NOT all in my hands when I wash it!! Maybe lowering it from 88mcg to 50mcg might help? And why are the reference ranges different every time?

Yesterday's lab results:

Free T3= 2.47 (range 2.50-3.90)
Free T4= .87 (range .61-1.12)
TSH= 7.81 (range .34-5.60)

previous labs:

Dec 2012:
T3 not tested
Free T4= 1.39 (Reference Range- .85-1.72)
TSH= 3.00 (Reference Range- 0.35-5.50)


May 2012
T3 not tested
T4 not tested
TSH= 2.85 (Ref Range .35-5.50)


Feb 2011:
T3 not tested
Free T4= 1.1 (Reference Range- 0.8-1.8)
TSH, 3rd Generation= 1.80 (no reference range given)
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Old 06-13-2013, 03:18 PM   #5
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Yeah...well, you can plainly see by your FT's that FT4 wasn't really bad...but that then she gave you some. And then you retested...and that's where you can PLAINLY see that the T4 isn't converting into T3 at ALL.

So, like most of us (I went 16 years on T4 getting more and more aches, pains, more autoimmune problems, etc.) JUST T4 only lowers TSH (which isn't USED by the best doctors anyway!!! And certainly not used as a test to raise and lower incoming hormones!!!) and my doctor doesn't DO TSH once he treats...he uses Ft4 and Ft3.

You need a doctor who will use T3 thyroid hormone. ANY doctor will do the tests...and then 'most' of them only STILL look at TSH and T4 and FT4. Sigh.

I really feel for you..had I not gotten myself educated...I'd still be overweight, and really hurting badly, as I have two OTHER autoimmune diseases to handle. (BTW...did your doc EVER do a TPO AB test? Do you know if you have Hashimoto's?).

Perhaps if you say where you are, someone has a good thyroid doctor (who knows enough to also use T3) there.
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Old 06-13-2013, 04:41 PM   #6
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You mention the aches and pains. I've had that since my twins were born in 2003. Not all the time, just when I haven't been moving, mostly just getting up out of bed. One Dr said it could by fibromyalgia brought on by all the stress my body went through- IVF, twin pregnancy, gallstones during the second half of my pregnancy, severe pre-eclampsia, emergency C-section at 33wks then emergency gallbladder surgery 10 days after that. almost 10 yrs later and I still have it so it sounds like it could all be from thyroid issue and 3 Dr's have no clue. ::sigh::

I don't know if I've had those tests done. My RE said I had Hashimoto's, or at least said it sounds like Hashimoto's, I don't remember. I've told my FP this. My FP Dr has done hormone testing on me and even wrote, "No clear signs of PCOS." after I told them I have it, verified by RE previously and it's not something that just comes and goes. So frustrating.

Note: I was taking levo in Dec and the other previous bw's and stopped taking it when I ran out, so it's been about 5 months w/o and that is reflected with the other day's bw. I wanted to see if it was really doing anything or not. It's also frustrating that they didn't bother testing for T3's .

I'm to go in and get tested again in 2 months. Think I should ask her now if I can try a T3 thyroid hormone (what would that be?) or wait until then? Also about the TPO and AB test, now or 2 mo?

I really appreciate your help and explaining this to me
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Old 06-13-2013, 04:43 PM   #7
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btw- I live north of Dallas, TX.
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Old 06-13-2013, 06:49 PM   #8
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I'm waiting for a reply from my Dr asking if we can try adding Np Thyroid. We'll see what she has to say, hopefully tomorrow.
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Old 06-18-2013, 05:48 PM   #9
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ugh. SO frustrating

Here's my original message to my Dr from me:
Quote:
"Can we try adding 'Np Thyroid' to help the T4 convert to T3 and see if that helps with my hypothyroid and side effects please? Been doing a lot of research on this and it could be just what I've been missing all these years. I'm hopeful it'll help with weight loss, increase energy, and overall feeling better. Just adding the Levothyroxine hasn't helped with any of that. What do you think?"
Her reply:
Quote:
I would rather give the levothyroxine a little longer to act and recheck labs. It is possible you are not having good conversion from T4 to T3 but we don't really know that until we recheck labs. I'm not sure what Np thyroid is. I have used armour before which has T3 in it. You are also on a pretty low dose--if you are tolerating but not feeling any better you could increase the dose to 75 mcg, 11/2 pills and we can recheck blood work in about 5 weeks.
My reply back:
Quote:
ok but remember, I've been on levo for a long time and I have never felt any different being on it than off of it, even on 88mcg. That's why I stopped taking it- to see if it's really doing anything. If the numbers were ok then that would mean one less pill i'd have to take. But obviously it IS helping with the TSH level so I'll continue taking it. As far as other typical low T3 symptoms that I have it hasn't helped at all (which is why Dr. A put me on it in the first place years ago). Unfortunately, in my years prior labs while on levo and off of levo the T3 was not checked. We can't just go by the TSH and T4 tests to 'fix' this. When we were going to Dr. R for IVF 10 yrs ago he confirmed that I have PCOS and may have Hashimotos (or maybe Dr A mentioned Hashimoto's, I can't remember) but I don't know if those tests have ever been done. I bring up the PCOS because there is usually thyroid issues as well. I will be going to Dr. D (ob/gyn) for my well woman exam soon and will discuss all of this with her too. When I had the thyroid nuclear scan done 10 yrs ago the radiologist even said my levels were low, even though they were within 'limits'. Let's see how the numbers come up in 2 months for my next lab work.
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Old 06-19-2013, 02:09 PM   #10
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she simply replied to up my dose to 75mcg is symptoms don't improve.

ugh. Again, I don't feel any different on 50mcg OR on 88mcg. I give up.
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Old 06-19-2013, 06:28 PM   #11
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Don't give up...let's try and find a doctor who WILL do natural thyroid or cytomel with T4. Maybe if you say WHERE you are (state, perhaps which side of the state, etc. large cities near you? Within say, a driving time of one to two hours one way?) someone will know a doctor who is more 'thyroid savvy'.
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Old 06-19-2013, 06:41 PM   #12
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Originally Posted by Karenlee View Post
she simply replied to up my dose to 75mcg is symptoms don't improve.

ugh. Again, I don't feel any different on 50mcg OR on 88mcg. I give up.
Don't give up on feeling better. Give up on that doctor. Would you keep going back to a mechanic that couldn't fix you car or a grocery store that didn't carry you brand of coffee?
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Old 06-20-2013, 04:44 AM   #13
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Karenlee, since you're in north Dallas, TX, (post #7 Lokarbiebarbie) you need to look up the Yahoo Thyroid Group for Texas. There's one for every state. Just look for Groups, then Thyroid by state. I'm Sure they can help you find a doctor in your area.

Also, if my Free T3 was That low (below range), I'd wouldn't be able to function at all.
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Old 06-20-2013, 02:19 PM   #14
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Thanks Terry.

I really don't know what 'not functioning' means. Motivation to do stuff? Sure, but I don't know what's "normal" and what's not. Am I motivated to clean my house or do laundry? Not really, never have been. I hate it and it's obvious and my husband hates that. lol Motivated to keep excersizing for more than 2 days in a row? nope. But that's just discipline that I also lack. lol Except that I DID stop biting my nails. again. lol

So, I don't know what's "Normal" and what's not "normal". Yes, I will be changing Dr's. Another situation has come up in the last couple of days with my husband that has sealed the deal. They seem to just want to script more and more, or higher and higher, medicine(s) rather than fixing the problems and I've had it. They've gotten too busy over the years and it's all about the money now instead of smart care.
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Old 06-20-2013, 10:26 PM   #15
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Function, as in no energy and couldn't stay awake in the afternoon. When my T3 tanked, 4 years ago now, I literally could not stay awake in the afternoons. No energy, draggy. I was on 100 mcg. Levo at the time (for a few years) and they dropped it to 75 and added in some T3. It took some tweaking to get a right dose over some months but I'm doing well now. Your FT3 would be scary low for me if those were my results. T3 is our energy. Your FT4 looks pretty good at around mid-range.

The thing was, I didn't know how bad I felt Until I felt better and it was a World of difference.
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Old 06-21-2013, 05:41 AM   #16
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I didn't get the 'no energy and naps' thing with low T3...I got the 'brainfog, no libido, couldn't concentrate, muscles and bones ached' with low T3. It's different for everyone.
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Old 06-21-2013, 05:16 PM   #17
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Ah, how could I forget about the brainfog and trying to pull a word out of the the air I couldn't think of. Hate that!
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Old 06-24-2013, 11:51 AM   #18
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I do tend to need closer to 12 hrs of sleep to feel rested but I usually don't get that. if I don't I'm ok for the day though. I don't like to take naps. messes my time of the day up ( mentally) and I don't feel any better after. lol. but what Loka said definitely sounds like how I feel.

stupid drs for not testing my t3 and not even trying TRY ::: grumble:::

so does Levo help raise t3 a little too?
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Old 06-24-2013, 01:11 PM   #19
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I want to recommend a doctor in Houston. His name is Dr. Luis Rodriguez with the Texas Institute for Reproductive Medicine & Endocrinology. 7400 Fannin St., Houston, Texas.

I was put on Synthroid (T4 only) and for 6 years I just got worse and worse. I went to different doctors and was told it was Fibromyalgia, depression, lack of sleep, you're just getting older, etc. After 6 years, I heard about this doctor in Houston and he was my last resort visit. He changed my meds to Armour Thyroid and it has changed my life! I now feel better than I have for years. The aches and pains, have gone and I'm able to sleep. I drive 5 hours to see this doctor and he is worth every penny!

You need to find a Dr who will prescribe you T4/T3.
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Old 06-24-2013, 05:10 PM   #20
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Quote:
Originally Posted by Karenlee View Post
I do tend to need closer to 12 hrs of sleep to feel rested but I usually don't get that. if I don't I'm ok for the day though. I don't like to take naps. messes my time of the day up ( mentally) and I don't feel any better after. lol. but what Loka said definitely sounds like how I feel.

stupid drs for not testing my t3 and not even trying TRY ::: grumble:::

so does Levo help raise t3 a little too?

Only if your body is Converting T4 to T3. I have to take both.
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Old 06-24-2013, 07:17 PM   #21
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Quote:
Originally Posted by LESESKI View Post
I want to recommend a doctor in Houston. His name is Dr. Luis Rodriguez with the Texas Institute for Reproductive Medicine & Endocrinology. 7400 Fannin St., Houston, Texas.

I was put on Synthroid (T4 only) and for 6 years I just got worse and worse. I went to different doctors and was told it was Fibromyalgia, depression, lack of sleep, you're just getting older, etc. After 6 years, I heard about this doctor in Houston and he was my last resort visit. He changed my meds to Armour Thyroid and it has changed my life! I now feel better than I have for years. The aches and pains, have gone and I'm able to sleep. I drive 5 hours to see this doctor and he is worth every penny!

You need to find a Dr who will prescribe you T4/T3.
Thrilled for you!

I wish my sis who lives in houston would listen to me. I kept telling her to go to him!
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