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Sharing Test Results any advice?
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Sharing Test Results any advice?

Was prescribed levothyroxine and took it for one, two, three, four weeks or so and felt awful.  Blood tests revealed the following levels:  I had to stop taking it.  Did not tell doc.  Blood was drawn and this was the result:
Levothyroxine 100 mcg
4/29/02
TSH       .65
Free T4  1.07
Felt SO bad you can't imagine.  Chose to STOP taking T4 on my own.

5/29/02
TSH      4.19
Free T4   .82
Getting Levothyroxine out of my system.  Felt better here.  I don’t think doctor knew I had stopped the meds and was researching this disease!!!!!!!!!!!!!!

Did lots of research and started looking towards T3 and T4 combined after reading
“The Thyroid Solution.”  TSH skyrocketed to 88.55 in the meantime>
7/5/02
TSH      88,55
Free T4     ,40

8/5/02
TSH       16.46
Free T4      .62
Free T3      2.7
After one month on Armour above.  One grain.

9/4/02
TSH        2.17
Free T4     .67

10/1/02
TSH      .32
Free T4  .72
Free T3  3.1
Did not feel good.  Stopped Armour for a bit.  Good Lord!

11/16/02
TSH     68,28
Free T4   .43

I was nursing my child and that was not helping so I stopped nursing.    I started biting tiny pieces of the Armour Thyroid once a day.
1/13/03
TSH    32.14
Free T4   .59
Free T3  2.3

2/18/03
TSH        27.48
Free T4  .57

GOOD BYE DOCTORS HELLO JESUS UNTIL 2006!!!!
4/25/06
TSH      5.86  
Free T4   .70
Here I don't even know what happened or what I was doing.  I just have a copy of this test.  Maybe I stopped keeping track for a while, but managed to have this one.  I know I felt terrible!!!!  

I finally try again in 2010 after I get out of bed!!!!
10/28/10
TSH       4.74
Free T4   NOT TESTED!  must have been a thyroid cascade!!!!

Most recent (well almost)
4/19/13
TSH          5.64
Free T4      .71
This is with no meds.  Pretty much where I was in 2006.

Last test showed TSH of 10 or so.  Have not gone to pick up a copy yet.
Apparently adrenals looked good???????  Feel like they're shot!!!!!
8 Comments Post a Comment
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Avatar_f_tn
So, is there a question in there?  LOL

What are the reference ranges on your FT3 and FT4?  Ranges vary lab to lab (and are adjusted from time to time within the same lab), so you have to post both together.  

How were your adrenals tested?  Did you have a 24-hour saliva test or another test that gave discrete readings several time throughout the day?

Have you hade B-12 and D tested?  Iron and ferritin?
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Avatar_m_tn
Ahhhh.  Now we have this in two threads.  How about re-posting on the original thread and I will try again to get this thread deleted?
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649848_tn?1357751184
Also see my comments on this thread...... toward the bottom.

http://www.medhelp.org/posts/Thyroid-Disorders/Tirosint--what-are-you-doing-to-me/show/1433910

Maybe we should leave them all?
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Avatar_m_tn
Yes, there is a question in there. lol!  Thanks for your response.  Not sure about "two different threads problem"  Sorry.   At the beginning I wrote "Sharing Test Results Any Advice"  I am "asking" if there is any advice based on test results from a full year, plus a test result from 2006 and the one in 2010 and my most recent one (well almost) from 2013.  My MOST recent test results from an endocronologist in June are:

TSH    8.010 uIU/mL (0.4 - 4.0 )  ,
Free T4 is .9 ng/dl  (0.7 - 1.9 )  
TPOAb which came up as 0.5 IU/mL (0.0 - 9.0)

I showed her my past tests and she didn't even order Free T3!!!!!!
She laughed at my most recent results ( TSH  5.64) and said, "THAT'S not what's causing your problems."  And you know what?  I hadn't even talked symptoms with her yet so must be something in my GP's notes when she got my this referral.

This MOST recent testing by this new endo consisted only of these tests plus the cortisol testing (short ACTH)  results below.
**************************************************************************************
For my past test results (that are in the previous thread)  (from 2002 to 2003 then one in 2006 and one in 2010)  the following LAB REFERENCES were used:
LAB REFERENCES USED:
TSH     .34 - 4.82

LAB REFERENCES USED:
Free T4                      71 - 1.85
(GP) 2013 test used  .59 - 1.61   SAY WHAT???

LAB REFERENCES USED:
Free T3             2.3 - 4.2


TESTS.................FROM.................THIS.................YEAR......................................2013

CORTISOL TEST: (Endo June)
ACTH short test. Basal coritsol, cortisol at 30 minutes and then 60 minutes
Initial was 10.8  ug/dl      
LAB REFERENCE USED:
8am  6- 23 ug/dl
8pm   0-9   ug/dl
My test was done between 2:00pm and 3:00pm    Endo said  it didn't really matter   SAY WHAT??
30 minute mark (more like 20) 22.7 ug/dl
60 minute mark (not quite)       28.8 ug/dl
So it DOES double and almost triple, but basal cortisol level of 10.8 around 2:00pm to 3:00pm in the afternoon should indicate adrenal insufficiency should it not?


Vitamin D (GP in April)
LAB REFERNCE USED:
Deficient <10 ng/mL
Insufficient  10 - 29 ng/mL          My vitamin D was at 27.9 ng/mL  (my GP did this test in April)
Sufficient  30  - 100 ng/mL         In April I had an appointment with a new GP and my results
                                               TSH 5.64 mIU/L (.34 - 4.82)   and Free T4 .71 mg/dL  (.59 - 1.61)

Not tested for levels of ferritin, iron or B12.  Never.  Testing after testing after testing as far as I can tell.
MOST recent labs showed insufficient vitamin D of 27.9


THYR PEROXIDASE AB (Endo)
LAB REFERENCE USED:
( 0.0 - 9.0 )

My TPOAb is at   0.5  IU/mL

So..........
Advice?
I guess my biggest fear is T4 ONLY.
I have developed a tremendous fear from the years of research I have done.
I am currently taking tirosint 25mcg but only after taking 25 mcg of levothyroxine TWO TIMES and getting serious heart palps and some heavy metabolic activity.  You see... I have not been able to eat right for quite some time.  I have virtually no metabolism. It was great to hear and feel activity but I had to run to use the bathroom over and over and over.  I have given up gluten for 2 months now and it is VERY hard.  Apparently levothyroxine pills contain gluten.  I believe I have an intolerance or even celiac's.  The bloating that can occur is incredible.  My girth skyrockets to astronomical proportions.  I am really afraid to eat much of anything now. I stick to protein as I find it the least offensive to my system.  I chew alot of double bubble gum right now just to chew.  
I am thinking T3 ALL THE TIME.  I am obsessing because I know it is the more active form that the body uses within hours.  When I was on T4 only I felt T4'D.  Like toxic T4'd.  When I went on Armour my T4 never got high enough even though my T3 increased (when the then doctor ordered that test)  I asked him all the time, but when I'd look at the paperwork he hadn't checked the Free T3 box afterall.  I wanted to check it SO bad!  I think my metabolism will start up again with T3.  Should I trust this T4 ONLY?  What if I take it until my next appointment in SEPTEMBER and become worse than ever as it builds up in my system and does not convert to T3?
I don't want to be T4'd again.  I don't want to just keep taking T4 ONLY.  What should I watch for as the days go by.  I need to stop taking it at the very first sign that it is NOT converting.  I have been on it now for over two weeks and I do not notice any improvement but I am starting to feel T4'd.
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Avatar_f_tn
Hmmmm...T4aphobia?  There's a lot of literature out there that will tell you that no one should be on T4 only, that no one does well on it.  B/S...pardon me...but that's not true.  Many people don't feel well unless on a T3/T4 combo, but at the same time, many do just fine on T4 only.  T4 is the therapy of choice in most of the world.  It's not for everybody, but nor do some people need both T3 and T4, nor can some people tolerate it.

If you have non-celiac gluten intolerance or celiac disease (you can be tested for that to verify), and if whichever levo pills you were on (manufacturer?) contain gluten, then it's quite probably the fillers and not the active ingredient (T4) that caused your symptoms.  Tirosint has no gluten and very little filler, so it's hypoallergenic.  Do you have the bloating on Tirosint?

Chewing gum is probably not a real good solution.  1) It can ruin your teeth.  2) Chewing gum makes you hungry.  3) You're just pumping sugar into your gut,

You won't notice much improvement for a while when first starting meds.  In fact, as the body has to rebalance once on meds, it's not unusual to feel a bit worse.  It takes T4 4-6 weeks to reach its full potential in your blood.  You're on a very low dose, so it's unlikely you'll see much improvement at all until you get closer to a therapeutic dose.  The longer you were hypo, the longer it will take for symptoms to resolve...looks like you've been hypo for over a decade, so you'll have to have patience.

T4 will not just keep building and building in your system if it's not converted.  That's not how it works.  There is no "sign" that you are not converting without lab tests.  

I'd request FT3 testing again next time...check the box...you're doctor will never remember what he ordered, or if he does, he'll just think it was an input error or whatever.  In your labs, I don't really see a conversion problem (although it's tough to say because FT4 levels at the same time were so low).  Your FT3 levels weren't great, but they're what you'd expect with FT4 on the bottom of or below range.

You've been hypo for a looong time.  When you re-introduce thyroid hormones, you are probably going to have a few hyper symptoms, like heart palps and diarrhea.  Your body has been compensating for the lack of thyroid hormones for years.  When they're re-introduced, everything that's been compensating has to adjust.  Also, since T3 is much more potent and faster-acting than T4, it has the potential to cause even more hyper-like symptoms.  You can start out even lower if you have to.  Tirosint comes in 13 mcg, or you can take a 25 every other day...ask your doctor about that.

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Avatar_m_tn
Check the box!  LOL!  Love it!  Thanks so much for your response.  You folks are a true blessing.  So........no such thing as T4 build up?  ....well, I'll be.  Glad to clarify that.  Really felt like it in my brain.  Unfortunately, I have something confusing to report.  I was feeling worse on the tirosint, Maybe because 25mcg doesn't get into my system well through the gelcap or 25mcg  only one time in the morning sucked.   Since I had metabolic activity, albeit an overload, on the levothyroxine manufactured by Mylan (sorry for leaving that out) AND since I CAN cut those pills in half, I take 12.5 mcg in the am and 12.5 mcg in the pm AND I am taking them sublingually.  Please let me know if all of this as as ludicrous as thinking T4 can build up in my system if it is not converting because that still makes sense to me lol!  I am still pursuing Armour as I would prefer to have a doctor who at least WOULD prescribe it should it become important.
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Avatar_f_tn
No, when there's too much T4, your body will convert more to RT3, which is inert, and less to T3, which is active.  However, since your FT4 is so low, it's much more likely that you will merrily convert available T4 to T3, which might give you those hyper symptoms for a while.  The problem is that the amount of available T3 that your body is hungry for and the amount that you are currently used to are very different.  You and your meds have to learn to live with each other.

Some people who are very sensitive to meds take theirs more than once a day.  If it works, there's nothing wrong with it.  You should get better absorption taking it sublingually.  

I agree that it would be nice to find a doctor who prescribes desiccated just in case.  I'd like all doctors to be open to all meds.  However, practicality rears its ugly head, and if you live in a fairly rural area, like I do, you have to make certain compromises when it comes to doctors.  My endo will prescribe desiccated (I asked him), but I know he does it very reluctantly.  It's not an issue for me because I have a heart arrhythmia and am not a candidate for desiccated.  You have to pick your battles, I guess.
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Avatar_m_tn
Just wanted to make sure you catch the PM I sent with some doctor info.
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