FT4 to FT3 Conversion Problem --- Doctors Do Not Order Correct Tests

[Bird_42]

Back in April 2011, I posted in a different thread that I felt I had an FT4-to-FT3 conversion
problem. My FT4 was rising, while my FT3 was staying the same. My hypothyroidism symptoms
(arthritic pain in hands, pain in knees, sluggishness, memory lapses) were bad.

Here is the thread:

http://www.medhelp.org/posts/Thyroid-Disorders/I-Stop-Taking-Vitamin-D-Free-T4-Goes-Up-Free-T3-Stays-Same/show/1500525



The poster known as gimel said that I should be tested for the following:

(vitamins A, D, B12) and (RBC magnesium, zinc, and selenium).  

gimel said that deficiencies in some or all of these can cause hypothyroidism symptoms.



I sent an email to my endo, asking for these 6 tests. The endo said that he would order the
vitamin D test but that the other 5 tests are not tests that he normally orders. The endo said
that I should ask my primary-care physician (PCP) for the other 5 tests.

I sent an email to the PCP, asking him for these 5 tests. Like the endo, the PCP said that he would
be willing to order the vitamin D test. However, the PCP wanted to see some information about the
usefulness of the other 5 tests.

So, I did some research.



I found the following website:

http://www.thyroid-info.com/articles/topsupplements.htm

This website shows the relation between thyroid function and vitamins E & D, selenium, and zinc.
The website also mentions vitamins A & C, Omega 3 & 6 fatty acids, and free-form amino acids.


I also found this website:

http://www.*************************/lab-values/

This website explains the tests for vitamin B12, ferritin, and RBC magnesium.


However, the most shocking discovery that I made was this website:

http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php

This website explains that, if a person has autoimmune disease, then vitamin D may make the
autoimmune disease WORSE. My hypothyroidism stems from autoimmune disease. If vitamin D will
make my autoimmune disease worse, then that may explain why my FT4 and FT3 levels went down
when I used vitamin D, even though I used vitamin D and Synthroid far apart from each other.



So, I sent an email to the PCP, telling him about all 3 websites. I said that I should
*definitely* be tested for vitamins E & D, selenium, and zinc. I said that *maybe* I should
also be tested for the following: (vitamins A, C, B12), RBC magnesium, ferritin, Omega 3 & 6
fatty acids, free-form amino acids, and the adrenal glands and stress hormones.

The PCP said that he sees no usefulness to any of these tests, other than the vitamin D test. The PCP
did, however, say that he suggests taking a vitamin and mineral supplement + vitamin E.



First of all, why did the endo tell me to ask the *PCP* for the following 5 tests: (vitamins A, B12)
and (RBC magnesium, zinc, and selenium)? If these tests are thyroid-related, shouldn't the *endo* be
handling them?

And why would the PCP tell me to take vitamins and mineral supplements without first testing me to
find out which vitamins and minerals I am deficient in? He tells me to take vitamin E without testing
my vitamin E levels. Without a blood test, how do I know how much of a dosage of vitamin E I need,
if any?

And the one test the PCP *does* want to give me is for the substance (vitamin D) that I can't
swallow, no matter what, because that substance makes my autoimmune disease worse.

What is going on here?

Thanks for any answers.

[artfemme]

Dear Bird,

If there was ever an example of the Chinese adage "perseverance furthers", it's you ! Lots of good info for everyone in this thread, glad it's still going and that you've been so exact with your data.

Just a thought : Do you always have your blood drawn at the same time of day and without eating prior to the the draw ? It's very important to be consistent when you're comparing your tests and best to have them drawn first thing in the morning. It's shocking, but my first 5 endos never told me that, and many of them drew the blood right there in their office without regard for when I had taken my meds. Of COURSE my FREE T3 levels were always high right after taking it, and then the endos would lower my meds based on their inaccurate testing (which because of my suppressed TSH, never elevated in the first place, convinced them that despite my radical hypo symptoms I shouldn't really be on thyroid meds at ALL. I obviously have a conversion problem according to every bit of research I've been able to find about what a profile like mine indicates....It's not that common, but it's been in the literature for decades. Lazy a-holes and their worship of the TSH test.)

ALL endos should know and should inform patients of the importance of not eating or taking thyroid meds before the blood draw.

So far I've been to 6 endos in Los Angeles....in my opinion, all of them have been incompetent if not outright criminally negligent. The last one, who I consulted a few weeks ago at the insistence of my PCP following an rT3 problem way above the norm with a ratio of 10 that caused a surge in hypo symptoms including spastic feet, hair loss, painfully dry skin and drastic weight gain and edema, decided after talking to me for 1/2 an hour and asking NO questions and in the face of two recent blood tests following cessation of T4 and extra supplementation with T3 that showed still-subnormal TSH but also subnormal FREE T4 with FREE T3 at the bottom number of the range....decided (after referring to me in a letter to my PCP as both "Lisa" and "Carla", neither of which is my name...after stating that he "suspected" I purposely did not include thyroid anti-body testing in my "sample" of labs brought to him when there were in fact 4, all negative, included in the COMPLETE health record of 6 years of testing I took to him, collated in folders by year....after saying he "suspected" I must have been referred for FNA of the nodules on my thyroid after I had not been, and that he "suspected" for some reason I had not followed that instruction (why ?? also, the nodules reduced 2 years in a row after I went on T4/T3)....after never ASKING me whether I'd had antibody testing, or if any endo had ever suggested FNA....after belittling me for taking the VIT D and B-12 supplements prescribed for me by a phlebotomist after I tested very low and was bruising and had enlarged RBC...after saying the drastic lowering of my cholesterol and glucose and normalizing of creatinine, BUN, and eGFR and blood pressure after changing nothing except taking T4/T3 therapy initially were "probably coincidental and would have happened anyway...after dismissing ALL my symptoms including macroglossia and hoarse voice and missing outer 1/3 of eyebrows by saying they must be caused by "something else" but refusing to say what...and despite the opinions of 3 psychotherapists that my previous panic attacks and severe depression were due to hypothyroidism after they saw them recur every time my meds were lowered) declared to my PCP that I would benefit by the administration of not one but TWO bi-polar medications and that he wouldn't be surprised if all my problems were not caused by heavy metal poisoning from my vitamins.

At what point is there a class action suit against these bozos ? My PCP just shook her head.

In any case, Bird, don't eat or take your meds before your blood draw, and try to have them done at the same time of day so they aren't affected by the daily fluctuations in metabolism.

Merry Christmas / Happy Holidays.

[Barb135]

As learned from an echocardiogram I had done about 4 years ago, all 4 of the valves in my heart have some regurgitation/leakage.  In spite of the leakage, it wasn't bad enough to worry about at that time (I can't remember the exact percentage of function, but it seems like it was around 58%.  Because I haven't had an echo since then, I have to go in on Jan 3 for another, to see if the leakages have gotten worse or remained the same.  You can live very will with only a percentage of heart function..  It's my understanding that almost no one's heart functions 100%.

You can try supplementing with selenium and see if that helps bring your FT3 levels up.  I find that if I take it daily, my FT3 levels stay good, but if I slack off, they tend to drop. Doesn't mean that will hold true for everyone.

I won't say that endo # 2 is a "bad" doctor; she just might not be what you need. The only thing I don't like about her is that she appears to focus too much on TSH.  You tend to analyze every aspect of every test and every symptom;  most doctors just don't do that.  Even if a test result is out of range, it may not always be a big deal (for instance, my B12 sometimes is above range, but I need it there in order to feel well). It always depends on the test and how out of range it is; in addition, it's okay for some tests to higher than normal, but if they are lower than normal, it's a concern and visa versa. We have rules of thumb for thyroid function, but not all lab tests have to be mid range, upper range, etc.  Likewise with symptoms; not every ache/pain, or other symptom is thyroid related, and since many doctors aren't even aware of all the hypo symptoms, it's very likely that symptoms will get passed off as being caused by something else.

[subire]

Bird, I had this up to read because it had a lot of good information and the stuff you have gone through, can help clarify things for other people on what to do and how to do and etc. I skipped to the end from about the middle because I wanted to see how you were doing and what was up now. I want to say that I am INCREDIBLY sorry that you have not found a doctor that will fully listen to you. I know how frustrating this is, I know how it weighs on you. I want to offer you hugs and support and let you know that you are doing incredibly well! You're a tough cookie!
There ARE many different reasons for similar symptoms. I know you have previuosly checked out your b12, but my level was 296. Technically normal. However, I started a liquid b complex and wabam, stiffness went down and pain went down. I am incredibly low in vitamin d, I start it, and my twitching goes away, shaking, heart palpitations aren't as bad, etc. I know you have issues with vitamin d. I believe you on those. Some people have incredibly funky systems (what I said is just the tip of the ice burg, ugh!) and I'm one of 'em, I know how things are when something doesn't work properly for you. I would say that she is correct in doing a daily dose instead of a long term dose, not only is it better for you, but you do not have a Large amount of vitamin d, and then it slowly decreases and you possibly have low vitamin d by the time you take the next dose. Have you thought of trying the liquid vitamin d? It's possible it'll get into your system sooner and thus less time to interfere. Hugs!

[Bird_42]

bump

[Bird_42]

(Continued from the post immediately above)


I began this new dosage six weeks ago. During these past six weeks, I have continued to feel hypo symptoms: ice-cold hands, memory lapses, sluggishness when going up the stairs, pain in my knees.

On a few occasions, I felt some "pulsating" in the arm. But I had the same reaction when I first started taking thyroid medicine in the summer of 2009 (50 mcg of levo per day). Also, I felt "pulsating" in one of my butt cheeks on one occasion, and I felt "pulsating" in one of my legs on a different occasion.

I have also felt some chest/heart discomfort, but that may be because I've been going to bed very late and possibly not getting enough sleep.



I had some blood tests a few days ago (mid-December). These tests were done at Endo 2's clinic, and here are the results:

FT4 = 1.32 (normal range = 0.82 - 1.77)

FT3 = 2.7  (normal range = 2.0 - 4.4)

TSH = 0.531  (normal range = 0.450 - 4.500)

Vitamin D = 11.0  (normal range = 30 - 100)



The FT4 value is in the middle of normal range, which is good.

But the FT3 is way too low. The FT3 should be in the upper one-third of normal range (3.6 - 4.4), but the FT3 is only 2.7, 25% below 3.6. Also, the FT3 is much lower than the FT3 of late October (3.2), even though the amount of Synthroid that I've taken since late October has *increased*. So there may be an "FT4-to-FT3 conversion" problem. There may be deficiencies in Selenium and Vitamin E, which help in conversion.

My Vitamin D level is very low as well.



So what does Endo 2 say about all of this?

She believes that my TSH, FT4, and FT3 labs are good, and that there must be non-endocrine reasons for my symptoms (cold hands, memory lapses, etc). She wants to keep the Synthroid dosage the same because the TSH is on the lower end of normal. She says that the FT3 swing from 3.2 to 2.7 is simply one of the day-to-day variations in FT3 levels. She said she could order Selenium and Vitamin E tests, to check for conversion issues.

She also said that I should take 1 50000-IU Vitamin D pill per week, for 8 weeks. I told her that, as I have learned repeatedly, Vitamin D interferes with my body's absorption of thyroid medicine. I said I wanted to get my thyroid levels up before taking Vitamin D. I also told her that I had heard bad things about the 50000-IU pill and that, if I were to resume taking Vitamin D, I would take a smaller dose. In response, she said that I should take 2000 IU of Vitamin D per day.



It would have been reasonable if Endo 2 had said the following: my FT3 is bad, my symptoms are bad, BUT she has concerns about increasing the Synthroid in light of my heart discomfort and the regurgitation and atrial dilation shown in my echo. However, the fact that she thinks that 2.7 is a good FT3 result, the fact that she believes my symptoms to be non-endocrine, and the fact that she does not want to increase the Synthroid because she is worried about TSH, make me believe that she is not a good doctor. What is really puzzling is that she did increase the Synthroid in late October, when the TSH was 0.24, *below* the normal range (0.40 - 4.00).

Three TSH-obsessed doctors treated my thyroid problem before I met Endo 2's predecessor Endo 1, and Endo 2 seems to be like them.

Endo 1 was recommended on the following website:
thyroid-info (dot) com / topdrs / illinois (dot) htm

But even Endo 1 was a bit too concerned about TSH, in my view.

In addition to being TSH-obsessed, Endo 2 doesn't seem to listen to me. After I explained that Vitamin D interferes with my body's absorption of thyroid medicine, she ignored that and simply said that, instead of
taking the 50000-IU pill, I should take 2000 IU of Vitamin D per day.



So here are my questions:

1) Is my echocardiogram indeed "normal"? How concerned should I be about the trivial or trace regurgitation and the mild atrial dilation? How careful should I be about increasing the Synthroid dosage?

2) Why did the FT3 plunge from 3.2 to 2.7? Is there a conversion problem? I had Selenium and Vitamin E tests in the summer of 2011, and my levels were normal.

3) Is Endo 2 a bad doctor? Should I find a new doctor?



Thank you for any information.

[Bird_42]

Well, it's been seven months since I posted anything to this thread. Some new developments have occurred, and I'll give you guys an update.

When I last posted (mid-May 2012), I had just taken Liothyronine (generic for Cytomel) for three days (in conjunction with Synthroid 125), had developed a bad reaction to the Liothyronine (chest pains, feeling too hot, etc), and had accumulated an excessive amount of thyroid hormone in my body. On advice from my then-endo (let's call him Endo 1), I did not take ANY thyroid medicine for five days. The purpose of skipping the thyroid meds for five days was to get rid of excess thyroid hormone.

After those five days, I resumed taking Synthroid 125 (but NOT the Liothyronine). For a week, I took the Synthroid 125 every other day. Then I started taking it every day. About 10 days after I resumed the Synthroid 125, I had some thyroid blood tests. Here are the results:

TSH = 2.150 (normal range = 0.340 - 5.600)

Free T4 = 1.14 (normal range = 0.61 - 1.81)

Free T3 = 2.3 (normal range = 2.3 - 4.2)

After five days of no thryoid meds, these low FT4 and FT3 values were expected.



In late May 2012, I had a second thyroid ultrasound. The first one occurred in June 2010. For both ultrasounds, there were no nodules and no calcifications. Everything was normal. The only "problem" was that, between June 2010 and May 2012, my thyroid became significantly smaller. Endo 1 said that a likely reason for this was that my immune system was destroying my thyroid. My hypothyroidism is autoimmune in nature, after all. Endo 1 said that he was not worried about the shrinking thyroid.



At the end of June 2012, Endo 1 moved to another state. His successor at the clinic became my new endo. Let's call her Endo 2.





In mid-July, I had an echocardiogram (echo, for short). Back in mid-May, right after I had taken Liothyronine for three days, Endo 1 gave me an EKG. The EKG showed "voltage criteria for left ventricular hypertrophy (LVH)". He strongly suggested that I have an echo.


The results of my echo are very detailed; so I'll give you guys a brief summary.

My echo showed that three valves (mitral, tricuspid, and pulmonic) have trace or trivial regurgitation. The left atrial area and the right atrial area are mildly dilated.

For the 2D measurements, some values are above normal range.

The LV ejection fraction is normal. The visually estimated left ventricular ejection fraction is normal at 65 to 70%.


My primary doctor (PCP) declared that this echo was "normal".





In late October, I had been feeling symptoms of hypothyroidism for a few months. I was feeling the following: cramping in my feet, sensitivity to the cold (especially since the arrival of cold weather in the fall), pain in my knees, pain in my back (near the kidneys), memory lapses, and a decrease in the sharpness of my mind.

Endo 2 ordered some blood tests.


Because one of the tests she ordered was Magnesium RBC, I had to have all the tests done at a nearby hospital. This hospital's thyroid tests were kind of unusual.

My FT4 was 1.1 (normal range = 0.7 - 1.5). The other normal ranges that I've experienced over the years are (0.71 - 1.81), (0.61 - 1.81), and (0.82 - 1.77). The lower limit of the hospital's normal range (0.7) is in line with the lower limits of the other normal ranges, but the upper limit of the hospital's normal range (1.5) is much smaller than the upper limits of the other normal ranges.

I've read in this forum that a person's FT4 should be in the middle of the normal range, and my FT4 value (1.1) is right in the middle of the normal range (0.7 - 1.5). However, this normal range (0.7 - 1.5) seems to be much narrower than the other normal ranges.

My FT3 was 3.2 (normal range = 2.5 - 3.9). This normal range is in line with the other normal ranges that I've experienced over the years. However, the hospital analyzes the FT3 test via a method called "dialysis".

My TSH was 0.24 (normal range = 0.40 - 4.00). This normal range is in line with the normal range at Endo 1 and Endo 2's clinic (0.450 - 4.500). However, the hospital calls this test "TSH - 3rd Generation", whatever "3rd Generation" means.


So, bottom line:

FT4 = 1.1 (normal range = 0.7 - 1.5)   Normal range may be too narrow.

FT3 = 3.2 (normal range = 2.5 - 3.9)   Analyzed by "dialysis".

TSH = 0.24 (normal range = 0.40 - 4.00)   "3rd Generation".  


One interesting note:   In mid-April, my Vitamin D was 18.6 (normal range = 30 - 100). In mid-June, I stopped taking Vitamin D supplements. In late October, my Vitamin D was 21.6 (same normal range). One would expect the Vitamin D to be lower, not higher.



Well, Endo 2 told me that my echocardiogram was "normal". However, Endo 2 also said, that the echo indicated that any increase in thyroid medicine would have to be VERY GRADUAL. And I desperately wanted an increase in Synthroid because of my hypo symptoms.

Endo 2 did increase the Synthroid, from (Synthroid 125, every day), to (Synthroid 125, 6x/week) and (Synthroid 137, 1x/week). I went from 875 mcg/week to 887 mcg/week. It was a very gradual increase, although Endo 2 was reluctant to increase the Synthroid at all.


(Continued in the post immediately below)