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]

Interesting. Barb, I know that you have no problem with generic Cytomel but many patients, myself among them, have documented adverse reactions. It seems to be very individual, from all the posts I've read. And there is the fact that not only do fillers vary from generic to generic....sometimes even containing CALCIUM carbonate, which of course binds the thyroid medication, gaaah !....and thus vary in the rate of dissolution in the gut, but also that the FDA approves all generics to vary plus-or minus from the brand by up to 10%. While this might not be a huge deal in SOME medications, I think in a fast-acting medication like T3 that it can be a very big deal indeed.

When I was switched by the pharmacy from Cytomel to a generic and didn't notice, after a few months I started to have heart palpitations, dizziness, shortness of breath, and panicky sensations. Since extreme panic attacks had put me in the hospital prior to being put on T3 (I seem to have secondary hypo and my TSH is now non-existant), I was frightened by the return of this symptom. When I questioned the pharmacy and my doc, I was told the medications are exactly the same but that wasn't so for me. I was not yet even on the amount of Cytomel I am on now, which has put my FREE T3 test in the proper range. I was also on a much lower dose of T4 than I am now and my other metabolic labs were still screwy. Now all my labs are fine....cholesterol especially significant.

My T3 dosage was cut and I immediately became severely hypothyroid again. I won't bore you with the saga of getting my labs into the proper ranges, but it took me finally sitting down and making a chart of ALL my labs (going back to 2005), including metabolic and CBC, and including the doses of thyroid medications I had been on, to finally see that the moment I started having problems was directly correlated to the switch from Cytomel to the generic. I insisted on being changed back and began to recover again.

Recently, after over a year of taking my care back from the endocrinologists and having my PCP test my blood every 6 weeks and change my prescriptions accordingly, I became stable enough to order my medication in 3 month supply from Express Scripts. Although my doc prescribed Cytomel, she forgot to check the box that said brand only and I received generic Paddock-manufactured T3 in the mail. It could not be more different from the brand.  

Because it was going to take some time to have the correct medication shipped, I had to substitute 2 Paddock pills per day in lieu of 2 Cytomel to stretch my medication until the new shipment arrived. I take six 5 mcg Cytomel a day to equal 30 mcg. I also take 150 mcg generic T4 and have no problem with the generic for that slow-acting medication. I am lucky in that I have no problem taking all my Cytomel in one dose without adverse effects and don't notice any significant fatigue at the end of the day. I know this is not the case for many.

In fact, I have tried taking two of my Cytomel sublingually in the morning to put it right into my blood stream, swallowing the rest. It didn't seem to make any difference, so I went back to just swallowing them. Cytomel doesn't dissolve readily under my tongue.( I DO take estradiol sublingually and am able therefore to reduce the mg's I take while keeping my labs in a good spot while also avoiding processing that drug through my liver.)

As an experiment, I tried taking a Paddock T3 sublingually. It is a much larger pill than the brand and it dissolved almost instantaneously ! It makes perfect sense then that it would dump the T3 right into the body and perhaps cause a problem for someone who is sensitive to that hormone yet still needs it. And this is one reason why it is especially important for those taking generics to have their doctor specify on their prescription that it must come from a SPECIFIC manufacturer, never change, and have their bloood tests balanced to that specific medication. I always have my T4 filled from Mylan and sometimes have had to wait a day or two to get it because the drugstore only had Paddock or some other manufacturer's product on hand. It is astonishing to me that doctors and pharmacies either don't understand or don't care about the extreme importance of continuity in  medication for hypothyroidism. It is even more important in a fast-acting medication like T3.

I WISH I could take generic T3. For a 3 month supply (in my case that's 540 pills) of the generic with my insurance, I'm charged $10.70. For the same amount of the brand I'm charged 10 times that much, $107.00. Criminal.

[flyingfool]

Several other people have related issues of intolerance when starting T3 medication.  it seems more prevalent when starting at or above the 10 mcg level.  Some people are more sensitive.  As Barb stated because T3 is fast acting people are best to take two doses a day.  

It may be possible that you needed to start out at 2.5 twice a day.  But you should never "fool with" heart issues so caution may well be in order.

What concerns me a little is that you report that you also stopped taking your T4 medication.  if you did not have these heart symptoms prior to taking T3 med, why would you stop your T4 medication?  Are you thinking that eliminating T4 will help "clear out" the Reverse T3 problem as there will be less and less T4 to be converted to RT3?  This may work but understand this may only work by allowing yourself to become pretty significantly Hypo.  And that is no fun either!

Adrenal issues can also affect Reverse T3. have you looked into that possibility?

[Barb135]

Cytomel (or generic T3) should be taken at regular intervals in order to keep your levels at a constant level.  Some people find that splitting the pills and taking 2.5 in the morning and 2.5 around noon, or so, works best. Taking it every other day or every few days is, basically, useless.  Cytomel is usually contraindicated in someone with a heart issue.

The generic T3's are not stronger than brand name cytomel.  A med that dissolves sublingually, might work faster, because it's going directly into the blood stream via capillaries under the tongue vs having to be swallowed, dissolved, then taken into the blood.

Not all T3 meds dissolve well, sublingulally.  That would depend on the fillers/binders used to make the pills and all manufacturers use different ones. I used to take my cytomel sublingually, but the generic pills I have don't dissolve well enough, so I swallow them.  I've read of some people chewing their pills; never tried that.  

[Bird_42]

(Continued from the post immediately above)



I should mention a few more things. First of all, even before I took the Cytomel, whenever I took a warm shower, after the shower I would experience pains in my chest, and sometimes in the back and in the arms as well. I thought that, since I had a sensitivity to cold temperatures due to my hypothyroidism, my taking a warm shower and then exiting the bathroom into cooler temperatures was causing these pains. But now I wonder, are these pains the sign of some heart problem?

Also, I have read that people who do athletic activity may get voltage criteria for LVH on their EKGs. Just hours before my EKG, I carried a somewhat heavy professional bag to work, and from work to the doctor's office. So, would that kind of exertion just before an EKG cause voltage criteria for LVH?

And then there's the issue of what kind of Cytomel I took. I was under the impression that the endo was prescribing a brand-name drug. The bottle I saw at the pharmacy said, "Liothyronine 5 mcg". I thought that Liothyronine and Cytomel were 2 names for the same *brand-name* drug. However, after taking the pills, I took a closer look at the bottle, and the label said in small print, "Generic for: Cytomel". The pharmacy confirmed that the Liothyronine that I had was a generic for the brand-name Cytomel, and that the prescription allowed for a generic.



The manufacturer of the generic Liothyronine is Paddock, and a google search showed the following online discussion of the Paddock generic:

www (dot) musclechatroom (dot) com/forum/showthread.php?19010-generic-liothyronine-a-BAD-experience

In the discussion's first post, the poster (username "era") states the following:

"When I take a Cytomel tab sublingually, it dissolves at a fairly slow rate. However, the generic liothyronine tabs are very soft, dissolving almost instantly in the mouth."

This person implies that the generic Liothyronine works much faster than the brand-name Cytomel.



So, are Cytomel and Liothyronine supposed to be taken sublingually?

I took Liothyronine and Synthroid at the same time, by swallowing them. Was I supposed to swallow the Synthroid and then take the Liothyronine sublingually?

And does Liothyronine, indeed, work faster than Cytomel?  If yes, then perhaps *that* is why I was feeling so bad after taking Liothyronine? Perhaps Cytomel would have worked slower and would not have given me chest pains, or at least would have given me chest pains to a much lesser extent?



So, it is 5/14/12 as I write this, and I have not had any thyroid medicine since the Synthroid of 5/9/12. I've had some chest discomfort and shortness of breath during the past few days, but these conditions seem to be improving. I definitely feel better today than I did on 5/8, 5/9, and 5/10.

I have not yet visited my primary doctor to check my current EKG against the last two EKGs, but I will probably do this soon.

But the biggest question I have is, what went wrong? Was I supposed to use the brand name of Cytomel, as opposed to generic? Was I supposed to use a smaller dose, like 2.5 mcg every few days instead of 5 mcg every day? I know that a lot of you on this forum have taken Cytomel. So, I'm hoping that you guys can provide some answers.



Once again, thank you very much in advance for any information you can give me, and I look forward to hearing it.

[Bird_42]

Hi, everyone. It's been about three months since I posted anything, and I wanted to give you guys an update. It is a bit long, but trust me, it's very interesting. :)

Back in February 2012, my new endo thought that my FT4 was too high and that my FT3 might be too low. He wanted to lower my FT4 (and
probably my FT3 in the process) before giving me Cytomel to raise the FT3. So, the endo lowered my Synthroid. I went from 150 mcg
3 times per week and 137 mcg 4 times per week, down to 125 mcg every day.

So, from mid-February 2012 to mid-April 2012, I took the following:

125 mcg of Synthroid in the morning, every day

1000 IU of vitamin D and 1000 mcg of vitamin B12, about 12 - 16 hours after the Synthroid, three times per week



In mid-April, I had new blood tests, and here are the results:

TSH = 0.224 (up from 0.063 in early February), normal range = 0.450 - 4.500

FT4 = 1.36 (down from 1.53 in early February), normal range = 0.82 - 1.77

FT3 = 2.8 (down from 3.3 in early February), normal range = 2.0 - 4.4

Total T3 = 102, normal range = 71 - 180    (no Total T3 test in early February)

VIT D, 25-HYDROXY = 18.6 (up from 16.5 in early February), normal range = 30 - 100

VITAMIN B12 = 637 (down from 887 in early February), normal range = 211 - 946



The FT4 value (1.36) was at about the middle of the FT4 normal range. However, the FT3 value, in my opinion, was way too low. I've read that the FT3 should be in the upper one-third of normal range, which in this case would be 3.6 - 4.4. My FT3 value (2.8) was 22% below 3.6.

And my hypothyroidism symptoms matched the low FT3 value. I was experiencing pain in my arms and legs, sensitivity to cold temperatures, trouble remembering things, constipation, etc.

However, my new endo seemed to be balking at giving me Cytomel. He said in a letter that my TSH (0.224) showed that I was hyperthyroid. He insisted that I discuss the issue with him in person. Well, I went to see him, and he agreed to give me Cytomel.

He wanted me to take 10 mcg of Cytomel per day (in 5-mcg pills). I would take the first 5-mcg pill with the 125-mcg Synthroid in the morning (I would swallow both pills at the same time). About 6 hours later, I would swallow the second 5-mcg pill. I would do this every day. However, to acclimate my body to the Cytomel, I would spend the first four days taking only one
5-mcg Cytomel pill, in the morning with the Synthroid. If all went well, I would start taking two 5-mcg pills on day 5. As for vitamins D and B12, I would take them about 12 - 16 hours after the morning Synthroid, three times per week, just as before.



So, on 5/6/12, a little more than 3 weeks after the mid-April blood tests, I started the Cytomel. After the 5/6/12 Cytomel pill, I felt hot to some extent, and I felt some tightness (or pain) in my chest and in my underarm areas. Those feelings continued after I took the 5/7/12 Cytomel pill. After the first two Cytomel pills, the feelings of heat and pain were mild, and these feelings were at a level that I thought I could handle.

However, after the 5/8/12 Cytomel pill, my feelings of heat and pain increased, and I felt bad. I woke up on 5/9/12 still feeling bad. So, on 5/9/12, I took the Synthroid but skipped the Cytomel, and I told the endo how I felt. He said that I was becoming hyperthyroid and that I should stop the Cytomel, and I agreed.

On 5/10/12, I was still feeling bad. So, I skipped BOTH Cytomel AND Synthroid, and I went to work (some light acting in an industrial video). After work, I visited the endo, and he gave me an EKG. The EKG was normal (no arrythmia, no heart attack, normal heart rate), EXCEPT for the fact that I had "voltage criteria for left ventricular hypertrophy (LVH)".

LVH is the thickening of the heart's left ventricle, and the EKG showed that it was *possible* that I have it. The endo said that, if I do have LVH, the LVH was NOT caused by the Cytomel. However, the Cytomel (or any other source of stress) would aggravate the LVH (LVH plus stress = chest pains). The endo also said that, if I had LVH, the LVH criteria would show up on an EKG whether stress was present or not. I told the endo that my previous two EKGs (July 2009 and October 2011) were totally normal (no LVH criteria), which meant that I did not have LVH in July 2009 or in October 2011. The endo said that it would be highly unlikely for
LVH to materialize between October 2011 and now. However, he still recommended that I have an echocardiogram and/or a stress test to
test for LVH conclusively. He also said that I should go back to my primary doctor and check the current EKG against the two previous EKGs. It is entirely possible that all three EKGs match and that the "voltage criteria" in the current EKG are simply a part of *my* normal EKG.

During this visit, the endo admitted that the Cytomel dose of 5 mcg per day was too high and that the FT4 level should have been reduced even more. The endo reiterated that I should stay away from Cytomel for the time being and that I should stay away from Synthroid for a few days.



(Continued in the post immediately below)

[Red_Star]

Hi, yes sublingual is amazing! :) I use 2000mcg daily of sublingual B12 spray for my juvenile pernicious anaemia.  I use the cyanocobalamin form of B12 as methylcobalamin sublingual B12 spray isn't available where i live.  I have read methylcobalamin is a better form of B12 however both forms boost B12 levels. I have antibodies to intrinsic factor and parietal cells and the only way my B12 is optimal is because of my B12 sublingual! :)

I also have Hashimoto's thyroiditis. I have read 50% with autoimmune pernicious anaemia have elevated TPO antibodies. Figures i'd be the 1 in 2.  The 100 per million chance of having juvenile pernicious anaemia wasn't enough apparently. Why can't i win lotto instead lol.