FT4 to FT3 Conversion Problem --- Doctors Do Not Order Correct Tests
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.
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.
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
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,
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.
Many of the substances you mentioned are water soluble which means your body doesn't retain it so testing for it wouldn't do much good...you level will change from day to day. The good needs that with water soluble vitamins and minerals, you can supplement without worrying your are over doing it...your body will just get rid of the excess.
Vitamin D is fat soluble which means your body retains it, so testing for it makes sense.
These vitamins/minerals are not necessarily "thyroid related" - Vitamins A, D, E and K are the fat soluble vitamins. Even though other vitamins and minerals may not be fat soluble, testing still makes sense, because but deficiency in these vitamins/minerals are often seen in patients with thyroid conditions, and can cause thyroid like symptoms. In addition, studies have shown that lack of selenium can affect the conversion of T4 to T3.
All of these vitamins serve important rolls in the body and adequate amounts are needed. Without vitamin D, calcium is not absorbed properly; magnesium helps with the muscle/joint aches/pains that are often seen in hypothyroid patients, plus it can help with the constipation. Vitamin B12 deficiency causes a "never ending" fatigue (similar to that found in hypothyroidism); untreated B12 deficiency can also cause numbness/tingling of the hands, arms, feet and legs, along with other things. B12 deficiency (pernicious anemia) often requires supplementation in the shot form, since some of us can't absorb it through the stomach. As I stated previously, selenium deficiency has been linked to adequate conversion of T4 to T3.
If your doctor refuses to test for these vitamins/minerals, you might try supplementing anyway, to see if it makes a difference. The problem with taking a "multi" is that they often don't contain enough of each vitamin/mineral to make a difference. Many of us find that supplementing with individual vitamins/minerals makes the most difference.
Well, in the past, I took Centrum multivitamin at night (with thyroid medicine in the morning). But Centrum gave me chest pains, and so I discontinued the Centrum. So, if I take any multivitamin, it can not be Centrum.
Taking individual vitamins and minerals is probably the best thing, but which ones? Without tests to determine where I am deficient, should I take vitamin E AND selenium AND zinc AND magnesium AND vitamin B12? That is 5 pills, PLUS Synthroid.
What about Omega 3 & 6 fatty acids and free-form amino acids? Should I take those supplements?
I suppose I could go back to the endo and show the endo the websites that I showed the PCP. But, if the endo will not order any tests either, then I'm in trouble.
And, in Chicago, there is a 4 - 6 month wait to see *any* new endo.
I know that this is a medical forum, not a legal forum. But should I threaten to sue my PCP and/or my endo with malpractice if they do not agree to these tests?
Well, I recently reiterated to my PCP that I need to be tested for vitamins E, D, B12, and for selenium, zinc, magnesium. I stated that magnesium helps with the muscle/joint aches/pains that are often seen in hypothyroid patients and that B12 deficiency causes fatigue (similar to that of hypothyroidism).
I pointed out that I could not simply take vitamins and minerals without having blood tests to determine which vitamins and minerals I need, and in what dosages.
The PCP suggested that I have an evaluation at the Integrative Medicine clinic affiliated with the PCP's medical group.
I did some google searches on Integrative Medicine, and I found this website:
According to this website, Integrative Medicine "combines conventional Western medicine with alternative or complementary treatments, such as herbal medicine, acupuncture, massage, biofeedback, yoga, and stress reduction techniques -- all in the effort to treat the whole person. Proponents prefer the term 'complementary' to emphasize that such treatments are used with mainstream medicine, not as replacements or alternatives."
Is Integrative Medicine (IM) really what I need? Are IM doctors the only ones who can test me for vitamin and mineral deficiencies? Has anyone on this forum gone to an IM clinic for treatment of hypothyroidism? Is IM usually covered by health insurance?
Well, I did some research, and I have found three online companies that specialize in private blood tests. These companies are the following:
Request A Test requestatest (dot) com
Private MD Labs www (dot) privatemdlabs (dot) com
Health Testing Centers www (dot) healthtestingcenters (dot) com
For each company, you specify the tests you want, pay money, and the company generates a test order. That test order is taken to a Chicago lab (LabCorp), which draws and analyzes the blood.
Based on the comments in this forum and on my own personal research, I believe that I may need the following tests:
vitamin E (serum)
vitamin D (25 - Hydroxy)
vitamin B12 and folates
vitamin A (serum)
vitamin C (serum)
I spoke to my health-insurance company, and I was told that, if a blood-test order does not come from a doctor, my insurance policy does not cover the test. The above tests cost between $600 and $900 (depending on the online company).
So, I have three options:
1) Get *all* of the tests, at my own expense.
2) Get only *the most important* tests, at my own expense.
3) Find a doctor willing to order the tests, and go to that doctor for one visit only. The purpose of the visit will be to obtain an order for the tests. Because the tests will be ordered by a doctor, these tests will be covered by my insurance. I can then go back to my usual doctors.
This suggestion actually came from a customer-service representative at my insurance company. So, the company presumably agrees with the idea. Actually, I have been receiving allergy injections for over 20 years, and I've thought about asking one of my current allergy doctors to order these tests for me.
So, which option do I go with? If I go with option #2, which tests are the most important ones? Please keep in mind that I am trying to determine what is causing my FT4-to-FT3 conversion issue.
Well, it's been a while since I posted anything in this thread, but I do have some new test results to report. These tests were done during the week of July 17, 2011. First, I was tested for TSH, FT4, FT3, and Vitamin D. These tests were ordered by my endo and were done in his lab. A few days later, I took private blood tests for selenium, vitamin E, vitamin B12, etc. These tests were done at the private lab.
The results from the first group of tests came in before I took my private tests, and these results are:
TSH = 0.109, normal range = 0.340 - 5.600
FREE T4 = 1.41, normal range = 0.71 - 1.81
FREE T3 = 3.4, normal range = 2.3 - 4.2
VIT D, 25-HYDROXY = 13, normal range = 32 - 100
Compared to my test results from mid-February 2011, the current FT4 is the same, and the FT3 has risen from 3.2 to 3.4. As I previously mentioned, I took vitamin D from late May 2010 to early August 2010, and the vitamin D caused my FT4 and FT3 levels to drop. But the last two FT4 tests show an FT4 level much higher than the pre-vitamin D level (1.13), and the current FT3 level (3.4) is the same as the pre-vitamin D level. So, it would appear that my FT4 and FT3 are on the right track.
However, the TSH is 0.109, which is lower than the previous TSH of 0.500. The endo said that my TSH is suppressed and that he wanted to decrease my Synthroid dosage. Currently, I take 137 mcg 4 times a week and 150 mcg 3 times a week. The endo wants me to take 137 mcg 6 times a week and 150 mcg 1 time a week. The endo said that the low TSH suggests that I am subclinically hyperthyroid. He said that subclinical hyperthyroidism increases my risk of cardiac arrhythmias.
I told the endo the following: 1) My FT3 should be in the upper 2/3 of normal range, 3.57 or higher; 2) I wanted to make sure that my FT4 and FT3 levels did not go down; 3) The TSH is not reliable because my hypothyroidism is auto-immune; 4) I want to make sure that we do not lower the Synthroid; and 5) I don't think I've have had any symptoms of *hyper*thyroidism, such as heart palpitations. Just the opposite, I've had pain in my hands and knees, which are hypo symptoms.
As for vitamin D, my current level (13) is much lower than my level on my last test (26). The last test was done in mid-May 2010. Obviously, the current level is very low and needs to be increased. The endo recommended that I take ergocalciferol (D2), initially 50000 IU weekly for 12 weeks, then 2000 IU daily. Now, the last time I took vitamin D (late May 2010 - early August 2010), I took cholecalciferol (D3). The "Nature Made" brand that I took contained calcium. Because of the calcium or because vitamin D makes auto-immune disease worse (or because of some other reason), my FT4 and FT3 levels dropped.
So, will D2 make my FT4 and FT3 levels go down the way D3 did? If D2 is better for my FT4 and FT3 levels than D3, then is 50000 IU per week a safe dosage? Or is 50000 IU too much? I thought about taking 20000 IU or 30000 IU per week, but my pharmacy says that there is no D2 dosage between 2000 IU and 50000 IU. So, which dosage should I take?
Now we come to my private blood tests. Here are the results for selenium and vitamin E:
selenium (serum or plasma) = 150 ug/L, normal range = 79 - 326, detection limit = 10
vitamin E (Alpha Tocopherol) (serum) = 7.0 mg/L, normal range = 3.0 - 15.8
I don't know whether the selenium test measured the serum or the plasma, but it seems that the selenium test and the vitamin E test show normal levels. However, it appears that the selenium and the vitamin E levels are in the lower one-third of the normal ranges. So, should I increase my selenium and vitamin E levels with supplements? Or should I leave these levels alone?
One area where I have a definite deficiency is vitamin B12. Here is my B12 result:
vitamin B12 = 189 pg/mL, normal range = 211 - 946
So, I have to take vitamin B12 supplements, vitamin D supplements, and Synthroid, and I have to make sure that these three medications do not interfere with each other. I want the endo to regulate all three medications because I think all three medications pertain to hypothyroidism and are related to each other. But the endo wants to pass the B12 off to my PCP.
Unlike my B12 test, my folates test was normal:
folates (folic acid) (serum) = 14.4 ng/mL, normal range > 3.0
I was also tested for complete blood count (CBC) with differential for the first time since the summer of 2009, when I was first diagnosed with hypothyroidism. All CBC values were in the normal range, except for monocytes.
monocytes = 15%, normal range = 4 - 13
So, the monocytes were a little too high. I know that monocyte levels rise when someone has an infection or when there is stress. So, is my monocyte level bad?
Also, I should mention that my platelet count is 146, normal range = 140 - 415. The count is just above normal. In summer 2009, my platelet count was 121, normal range = 150 - 400. I have read that auto-immune disorders (like my hypothyroidism) can cause the destruction of platelets. So, are these low values expected for someone who has auto-immune hypothyroidism?
Finally, I also had the test for comprehensive metabolic panel. All values are normal, except BUN and BUN/Creatinine ratio.
Creatinine (serum) = 0.98, normal range = 0.76 - 1.27 (normal)
BUN = 22, normal range = 6 - 20 (high)
BUN/Creatinine ratio = 22, normal range = 8 - 19 (high)
Is this anything to worry about?
I should mention that my last BUN test was done in December 2010 at my PCP's lab,
and that the result was BUN = 19, normal range = 7 - 23.
It seems that my current BUN of 22 would be within the normal range of my PCP's lab.
So, I apologize for the long post :), but I would greatly appreciate any comments.
Well, you know that TSH being low, does not necessarily indicate that you are hyper; your FT3 and FT4 are good in their ranges. In view of that, I would resist lowering dosage of thyroid med.
Your B12 is definitely too low and you should have it checked regularly. If your deficiency is caused by pernicious anemia, you won't absorb the B12 from oral supplements and will need to inject instead.
Your D is also low. D3 is what you need to be taking. I really don't think taking the vitamin D is what caused your FT3 and FT4 levels to go down before. I think that was just a coincidence, that you went hypo at that time. To my knowledge, taking vitamin D2 will do nothing, or very little for you. You need to space out the vitamins from your thyroid med, by at least 4 hrs, to prevent them from inhibiting absorption of the thyroid med.
You really need to talk to your doctor about all this. Selenium is toxic if too much is taken and since your level looks good, I'd certainly want a doctor's opinion.
I'm not familiar enough with the creatinine/BUN to comment on those; you should discuss them with your doctor.
Well, I did some research on pernicious anemia, on Wikipedia.
Pernicious anemia is a type of megaloblastic (MB) anemia.
MB anemia occurs as follows: 1) B12 deficiency causes folate deficiency; 2) folate deficiency causes MB anemia. Different types of MB anemia correspond to different causes of the B12 deficiency. In pernicious anemia, the auto-immune destruction of gastric parietal cells leads to a lack of intrinsic factor, which causes a decrease in the absorption of B12 into the blood, which causes the B12 deficiency.
To determine whether I have pernicious anemia, I first have to determine whether I have any MB anemia at all. I do have a B12 deficiency, but we can see that my folates are very normal. So, that suggests that I do not have MB anemia. Furthermore, MB anemia is identified with a high MCV and a normal MCHC (in the CBC blood test). However, my MCV and my MCHC both seem to be normal:
MCV = 91, normal range = 80 - 98
MCHC = 33.4, normal range = 32.0 - 36.0
So, these values also suggest that I do not have MB anemia. So, I probably do not have pernicious anemia.
But the real question is the following: Is it possible to have a decrease in the parietal cells, a decrease in the intrinsic factor, and the loss of B12-absorption ability WITHOUT a resulting folate deficiency and MB anemia? If yes, then my folate, MCV, and MCHC values become irrelevant, and we have to find some other test for this loss of B12-absorption ability.
As for vitamin D, I do believe that the D3 caused my thyroid levels to go down, but I am not sure WHY the D3 caused the thyroid levels to go down. Two possibilities: 1) the D3 contained calcium; 2) vitamin D causes auto-immune disease (like my hypothyroidism) to get worse, as specified in the following link:
Yes, you can have pernicious anemia without having folate deficiency - I do. Look on your lab report and find the RDW - this indicates the size of your red blood cells, and if they are larger than normal, this is suggestive of pernicious anemia. Megaloblastic anemia is caused by folate deficiency OR B12 deficiency.
I won't argue the point of the vitamin D with you, but we do need to be careful when researching -- bottom line is that all vitamins/minerals and other supplements should be separated from thyroid medications by at least 4 hrs. If that simple guideline is followed, you should be able to take most supplements.
There are many good brands of vitamin D on the market that do not contain calcium or soy, which is known to inhibit absorption of thyroid medication.
As to the dosage, that should be determined by your doctor, since vitamin D can be toxic if excess is taken.
Well, my PCP has recommended that I take 2000 mcg of vitamin B12 per day. The PCP recommends the pill version, not the injectable version. So, this probably means that the PCP does not believe that I have pernicious anemia or any other B12-absorption issues. Now I just have to find a B12 brand that does not contain calcium or soy.
As for vitamin D, I will discuss the D2-vs.-D3 issue, as well as proper dosages, with my endo when I meet with him next week.
I did speak to a pharmacist about the interactions among Synthroid, vitamin D, and vitamin B12. She said that, as long as I take each vitamin four or more hours after taking Synthroid, it doesn't matter whether I take the vitamins at the same time or separately. The vitamins can be taken at the same time without interfering with each other because vitamin D is fat-soluble and vitamin B12 is water-soluble.
Meanwhile, about 10 days ago, I had the Magnesium RBC test. I was supposed to have this test earlier, at the same time as the B12 test, but the private lab didn't notice the Magnesium RBC test on my test-order paperwork and therefore didn't analyze the blood for Magnesium RBC. So, I had to come in for another blood draw.
Here is the result:
Magnesium RBC = 6.8 mg/dL, normal range = 4.2 - 6.8
Disclaimer: Plasma NOT separated from cells; may falsely decrease RBC Magnesium levels.
So, given the disclaimer, my actual value is 6.8 or higher. Thus, I may have excess Magnesium RBC. What does this mean? And how do I lower my Magnesium RBC? I haven't shown this result to my PCP yet because he just came back from vacation.
There is one more thing that I want to mention. In late June 2011, probably in response to this thread, I received a private message from someone on this forum. I won't mention the person's screen name, but this person's profile reveals that this person has NOT posted anything to any forum. Here is the private message verbatim:
need to lower ur dose of hormone, had the same problem. medication contain only T4. the level of T3 - T4 in my case was 1:4. i.e free T3 will be 4 and free T4 be 1, in ideal gland functioning condition. whenever my gland would function properly, intake of medication would increase in the body and the level of t3 will automatically reduce. when t3 is reduced you would feel less lively and would lose sharpness. hence u need to reduce your dose. however i would recommend you to see an superior endocrinologist cause many doctors as well
as not well informed endocrinologist are aware of this problem. low vitamin d3 and b12 to effect your thyroid function. get help my friend. this disease is not serious but wrong treatment can dramatically effect your life
Now, I had some trouble understanding this message, and I sent a private message to the sender, asking him to elaborate. However, I never got a response. Apparently, this person is saying that I have to reduce my level of thyroid hormone, but I'm not sure why. Do I reduce my FT4 level or my FT3 level? Can someone possibly interpret this private message? My endo actually wants me to decrease my Synthroid intake because my TSH is lower. So, this private message has become very significant.
Many doctors will have a patient try oral B12, prior to beginning shots. To my knowledge, most B12 supplements do not contain calcium or soy; however, do be sure to read the label carefully.
I'm not sure about the PM you got - it really doesn't make much sense. Increased medication, usually increases the levels of FT3 and FT4, if everything is working properly. There is no "set" numbers that we should all have - your "feel good" numbers will different from mine.
In my opinion, your dose does not need to be lowered, simply because of the TSH. That's nonsense. Your FT3 and FT4 are good - I wish I could get mine to those levels. My TSH is much lower than yours (< 0.01) and there's no way I'd let anyone lower my med dosage.
You only need to lower your med dose if your FT3 and FT4 are too high (yours aren't) OR if you have hyper symptoms, which you don't.
"My TSH is much lower than yours (< 0.01) and there's no way I'd let anyone lower my med dosage."
The problem is that the endo can lower the dosage because he has the authority to prescribe the medication. If the endo stops prescribing the current dosage, what can the patient do except to find a new endo? And, here in Chicago, there is maybe a 4 - 6 month (or more)waiting list to see any endo.
"Many doctors will have a patient try oral B12, prior to beginning shots."
If a patient needs B12 shots, is the patient expected to inject himself with the shots? Or will a medical professional do the injections? I already have allergy injections every few weeks. The last thing I need is another injection.
I take B12 orally 1000mcg daily & vid D3 daily. I take both about 3-4hrs after taking my thyroid medication. I had to start out with the B12 shots & eventually could do the oral OTC B12 tablets. For some reason people who have issues with thyroid also have issues with B12 & Vit D.
I tried following the thread, but it became to "over anyaylzed for me".
Whenever my doctors try to lower my thyroid dosage, I have been able to get them to understand (sometimes grudingly) that I actually FEEL good with a TSH that's in the basement because my FT3 and FT4 are right...... of course, if your doctor refuses to listen/write the script, you have no choice but to find another who will....... Oops, had one doctor who wouldn't listen, sent me to very severe hypoland and I kicked him to the curb in a heartbeat.
I have pernicious anemia, which means I do not absorb B12 via oral supplements. Yes, I inject myself weekly because that's the only way I can keep my levels high enough to feel human. I used to go to the doctor's office for the injections, but that cost me a $25 co-pay each week; I can buy the B12 for just over $2 for 10 shots, needles for about $0.10/ea, alcohol swabs are cheap, as are cotton balls....... the supplies for 3 months worth of shots are much less than 1/2 of one co-pay at the doctor's office.
It's not that hard to self-inject; just think of a diabetic who must inject themselves multiple times/day if needed.
You could also try a sublingual or liquid B12 that might be absorbed better. While they will help some, there are those of us, who simply have to inject.
Totie, I'm sorry you had a hard time following the thread or thought it was over analyzed. I'm happy to know that you can take the oral B12 supplements; unfortunately, things aren't quite so cut and dried for some of us.
Well, I went to a vitamin store, and I found three brands of B12 that contain no calcium or soy. These brands are the following:
1) Country Life
1000 mcg, pills/tablets, contains cyanobalamin
1000 mcg, sublingual, contains cobalamin and a very small amount of sugar alcohol
3) Methyl B12
1000 mcg, lozenge form, contains methylcobalamin and is for vegans
The bottle for Methyl B12 says that methylcobalamin is better absorbed than cyanobalamin. Is that true? Also, I am concerned about the sugar alcohol in the Solgar brand. The guy at the vitamin store said that the amount of alcohol was so small that I wouldn't be impaired or intoxicated, but I'm not so sure. So, is Methyl B12 the best brand?
Also, each brand contains magnesium stearate. As I mentioned above, my Magnesium RBC blood test showed a probable excess of magnesium. So, will the magnesium stearate worsen the magnesium excess?
Hi, everyone. It's been a while since I posted anything, and I just wanted to update you guys on my situation. A lot has happened since I last posted. So, this post may be a little long. I apologize for the inconvenience. :)
In late August 2011, I started taking vitamin D3 vcaps, 1000 IU, brand name Bluebonnet. I took these vcaps four times per week, for three weeks. Then I started taking these vcaps every day.
In early September 2011, I started taking vitamin B12, methylcobalamin lozenges, 1000 mcg, brand name Jarrow Formulas. I took these
lozenges four times per week, for two weeks. Then I started taking these lozenges every day.
The D3 vcaps and the B12 lozenges contained no soy and no calcium.
I continued to take Synthroid as follows: 137 mcg, four times per week; 150 mcg, 3 times per week. I had been taking these Synthroid
dosages since June 2010.
Meanwhile, in August 2011, I began experiencing watery and pulsating sensations in my ears, especially my left ear. My PCP saw fluid
in my left ear. In October 2011, I saw an ear, nose, and throat specialist. The specialist performed a "surface" examination of my ears, nose, and throat, including a tympanometry with reflex threshold on my ears. He found no problems, not even ear fluid. However, he cautioned that problems could still exist and that a deeper examination might find them. A hearing test performed by an audiologist showed that my hearing was OK. The specialist suggested that my allergy-related stuffy nose might be causing the ear problems, and suggested that I take the nasal spray Nasonex. Since Nasonex causes nosebleeds, I declined to take Nasonex.
Since my visit to the specialist, some additional ear problems have surfaced. I've felt pain and clogging in my right ear. Also, when I talk, the right ear sometimes "acts up" and makes my talking sound like a static-filled radio station.
I looked up these ear problems on the Internet, and some people suggested that the pulsating sensations in my ears could be caused by
iron deficiency. Other people suggested that the pain in my right ear could be thyroid related.
By early December 2011, I was experiencing increasing hypothyroidism symptoms again. I was having pain in my knees as I walked up the
stairs. I was experiencing pains in my finger joints. I was having memory and mental lapses. In early December 2011, I took some blood tests, and here are the results:
TSH = 0.108, normal range = 0.340 - 5.600
FREE T4 = 1.20, normal range = 0.61 - 1.81
FREE T3 = 3.3, normal range = 2.3 – 4.2
VIT D, 25-HYDROXY = 26, normal range = 32 - 100
VITAMIN B12 = 448, normal range = 180 – 914
FOLATES (SERUM) = 15.4, normal range > 5.9
Compared to my July 2011 tests, my vit D and B12 levels were up. So, the supplements were working. However the FT4 was down from 1.41 to 1.20. That's a 15% decrease. The FT3 seemed to be down slightly from 3.4 to 3.3. So, it seemed that, once again, vit D was bringing down my thyroid levels. A different brand of vit D had lowered my thyroid levels in summer 2010.
I spoke to my endo. He believed that, because my TSH was 0.109 in July 2011 and 0.108 in December 2011, I was HYPER-thyroid and my
Synthroid should be decreased. I was shocked. The vitamin D was lowering my thyroid levels, and my symptoms matched those lower
levels. And the endo wanted to reduce the Synthroid and lower my thyroid levels even further.
Well, the endo suggested that, if I disagreed, I should find a new endo.
I, too, believed that I should find a new endo. :)
So, I went to the website http://www.thyroid-info.com/topdrs/illinois.htm This website lists doctors who treat thyroid issues based on symptoms, not based on TSH. I found a doctor who looked promising, and I made an appointment. In mid-January 2012, about three weeks before the appointment, I stopped taking the vitamin D, and I started to feel better.
As for the new endo, first of all, unlike my first endo, this new endo is open to using T3 therapy. He prefers Cytomel, but he is also open to desiccated thyroid like Armour.
On the issue of my ear problems, he suggested that my problems could be allergy related. However, between the time I saw the ear specialist and the time I saw this new endo, I spoke to my allergist, and the allergist believes the ear problems are not allergy related. I mentioned to the endo the possibility of iron deficiency, and the endo ordered a blood test for ferritin.
On the issue of vit D and my lowered thyroid levels, I told the endo about this article:
This article describes how vit D exacerbates autoimmune disease like my hypothyroidism. However, the new endo does not believe that I had enough vit D in me to exacerbate my hypothyroidism. Instead, he believes the following:
1) The vit D that I took in summer 2010 lowered my thyroid levels because that vit D brand had calcium in it. He believes this, even though I took the thyroid medicine in the morning and the vit D at night.
2) The Bluebonnet vit D that I recently took (no soy, no calcium) lowered my thyroid levels because I was taking the vit D only 4 - 5 hours after taking the thyroid medicine.
The new endo also believes that, even though the lab's minimum vit D level is 32, some people can be OK with a vit D level of only 25 or 26. So, the endo suggested that it may be a good idea to take the Bluebonnet vit D (no soy, no calcium) 12 hours after the thyroid medicine, only three times a week.
After I discussed the above info with the endo, I took blood tests. Here are the results:
TSH = 0.063, normal range = 0.450 - 4.500
FT4 = 1.53, normal range = 0.82 - 1.77
FT3 = 3.3, normal range = 2.0 - 4.4
VIT D, 25-HYDROXY = 16.5, normal range = 30 - 100
VITAMIN B12 = 887, normal range = 211 - 946
ANTI-TPO Ab = 8, normal range = 0 - 34
ANTI-THYROGLOBULIN Ab < 20, normal range = 0 - 40
FERRITIN, SERUM = 281, normal range = 30 - 400 NG/ML
MONOCYTES = 16, normal range = 4 - 13
BUN = 23, normal range = 6 - 20
PLATELETS = 136, normal range = 140 - 415
The FT4 has increased from 1.20 to 1.53. This is probably because I stopped taking vitamin D. However, the FT3 is still at 3.3.
The endo says that the TSH is suppressed at 0.063 and that I am over-replaced on thyroid hormone. So, he wants to lower my Synthroid to 125 mcg for six weeks, before we add Cytomel. At first, I was shocked that he was focusing on TSH. However, I believe that FT4 should be in the middle of normal range, and my FT4 seems well above that. So, is my FT4 too high? Would lowering my Synthroid (and thus lowering my FT4) be a good idea? Is there some kind of FT4-to-FT3 conversion problem?
Also, the endo says that my vit D is low and that I should take 2000 IU of vit D per day. However, this endo had earlier stated that taking 1000 IU per day, three times a week, would be OK. So, is he being contradictory? Also, what do you guys think of the idea that vit D exacerbates autoimmune disease? The endo said that I didn't have enough vit D in me for the exacerbation, but the article that I showed him didn't say that only a *high* amount of vit D will exacerbate autoimmune disease. Theoretically, *any* amount of vit D can exacerbate the disease.
Also, what about my ear problems? My ferritin seems to be in normal range. So, it doesn't look as if iron deficiency is the cause.
Are these ear problems thyroid related?
Also, my monocytes and BUN are high, and my platelet count is low. Is that anything to worry about?
Thank you very much for any information and comments.
Vitamin D is needed for healthy thyroid function. The vitamin D council recommend between 50 - 80ng/mL (125 - 200nmol/L) for optimal health. T-cells start out inactive, but once triggered they become killer cells that seek out and destroy viruses and bacteria. Researchers from the University of Copenhagen have found that T-cells will lie dormant unless they can find vitamin D. In other words, vitamin D is crucial for activating immune defences.
Vitamin D levels below 30 ng/mL (75 nmol/L) are associated with a fall in the absorption of calcium from the intestine. Levels under 38ng/mL (87nmol/L) are associated with double the risk of respiratory infection. The risk of breast, colon, and rectal cancer fall as vitamin D blood levels rise at least up to 40 ng/mL (100nmol/L). The average person only begins to store vitamin D at 40 ng/mL (100 nmol/L) whereas at 50 ng/mL (125 nmol/L) virtually everyone begins to store it for future use.
BUN is a waste product derived from protein breakdown in the liver. BUN above 25 usually indicates kidney disease but if the creatinine is not above 1.1, then elevated BUN levels could be due to anterior pituitary dysfunction, dehydration, or hypochlorhydria (low stomach acid).
Increase in BUN level can be caused by kidney damage, excessive protein intake, certain drugs, intestinal bleeding, low fluid intake, gout, exercise, heart failure, boron deficiency, decreased digestive enzyme production from the pancreas. Less common causes include metallic poisoning, pneumonia, ulcers, Addison's disease, increased protein catabolism, dysbiosis, congestive heart failure.
An increased percentage of monocytes may be due to chronic inflammatory disease, parasitic infection, tuberculosis, viral infection (eg: infectious mononucleosis (Epstein Barr Virus), mumps, measles). While there are many causes of low platelets (thrombocytopenia), bacterial and viral infection are listed causes.
Epstein Barr Virus is something to check out. An article from stop the thyroid madness: "Why you, as a hypothyroid patient, need to be aware of the Epstein Barr Virus." has more info.
When i was very deficient in magnesium, if i talked too loud i would get a crackling sound. I also had noise sensitivity (everything was too loud), and sometimes i could hear my heart beating pulsing in my ear. I also had sudden loud ringing in one ear which would then subside again but not 100% sure if this was due to magnesium. I did have that symptom again recently and i am showing a few signs of low magnesium again so it's possible.
Magnesium is the most important co factor for vitamin D absorption. After 6 months of taking 5000IU of vitamin D daily, my vitamin D levels only rose from 11.5ng/mL (28 nmol/L) to 17.5ng/mL (43nmol/L) as i was magnesium deficient. Vitamin D supplementation can worsen an existing magnesium deficiency. I know! One good reason for feel better when stopping vitamin D supplements is if you have a magnesium deficiency. :)
Hmm my vitamin D levels were 12ng/mL (30nmol/L) and only rose to 16ng/mL (40nmol/L) in 6 months actually. :) Who knows where i got that other info from..my brain meh! :) I see you had top of the range RBC magnesium. Should of read that prior to my answer lol. But anyway, no magnesium blood test is accurate although RBC magnesium is better than serum magnesium.
Vitamin D levels below 30 ng/mL (75 nmol/L) are associated with a fall in the absorption of calcium from the intestine. Levels under 38ng/mL (87nmol/L) are associated with double the risk of respiratory infection. The risk of breast, colon, and rectal cancer fall as vitamin D blood levels rise at least up to 40 ng/mL (100nmol/L). The average person only begins to store vitamin D at 40 ng/mL (100 nmol/L) whereas at 50 ng/mL (125 nmol/L) virtually everyone begins to store it for future use.
I read this part and became alarmed. I have been Vit D deficient since I had a TT and that's been over 2yrs. I haven't been consistent with taking my Vit D supplements, so my levels vary on labs, the lowest being 16 and the highest at 20. I recently became persistent with taking all of my vit's due to the fact that I feel like crap from hypo symptoms. Thanks for the info.
No problem. :) Knowledge is power. My doctor told the receptionist no action needed when i called for my vitamin D results (16ng/mL/40nmol/L). Ummm O_o My doctor's office is a nutritional power free zone. :P
You're absolutely correct, knowledge is power! One thing i can truly say about everything that i'm going through because of not having a thyroid is this: I'm more educated about the power of a functioning thyroid. :))
To Red and all....butting in here, stumbled upon the thread while posting a new question.
Low B12 turned out to be one of the first most obvious signs of my developing hypothyroidism. I went to a blood specialist at Cedars-Sinai in Los Angeles because I had unusual and persistent bruising, lasted forever though often I couldn't recall bumping myself. the specialist did a lot of testing in her office and told me I had pernicious anemia based on enlarged Red blood cells, w/ the bruising as a presenting symptom. I later found out that, yes, pernicious anemia is auto-immune related and also related to HYPO.
Don't have time to spend here but wanted to tell you that the blood specialist told me that B12 sourced from methylcobalamine is the one that is most easily absorbed into the body, and that without that source other B12s are a waste of money and the Bs excreted. She recommended NOW brand sublingual as the one most readily absorbed, especially since it doesn't go through the digestive tract. She said that the other recommended one is JARROW, which is a capsule. I have been taking the NOW Ultra B12, which contains the other Bs as well, since 2005. When I get lazy and don't take it, I not only feel fatigued after a short while, but the bruising comes back too. I was told to take a minimum of 1500 mcg a day...I take 3 droppers (they only fill about 1/2 way) which is about 2000.
As for Vit D....15 - 30 minutes a day in the sun without sunscreen gives you what you need , but that isn't always possible and in any case low D IS associated with hypothyroidism and we may have trouble synthesizing it. When I was finally tested, I had way below the norm and my calcium labs were off too. My PCP resisted testing me, but after I insisted and we got the labs back, she was shocked. At first I was prescribed 3000 units a day. After a year or so, my gynecologist, who deals with hormonal issues and seems more familiar with thyroid issues than any endo I've gone to looked at me latest labs and said the D3 was still too low, down at the bottom of the range. She said it should be around 50 in the range and raised my dose to 5000 units a day. I found a sub-linual 5000 unit sublingual SPRAY that makes it so easy to take....even when I'm lazy with my other vitamins, I can always take D and B-12, and the taste is good too. The sub-lingual D3 doesn't have any soy or calcium. The brand I found is L.A. Naturals, and I feel much better since I've started taking it. Strangely enough, it's manufactured in Indiana, not L.A., where I live.
I don't test positive for Hashi's , although my sister has it, so I can't speak to whether it affects your levels or not. All I know is that these brands work for me. NOT selling them, pimping them, nothing like that what-so-ever. Just FYI, my experience.
Hi, Red. Thank you very much for your information.
You wrote: "Vitamin D levels below 30 ng/mL (75 nmol/L) are associated with a fall in the absorption of calcium from the intestine."
In mid-July 2011, my vit D was 13 (normal range = 32 - 100). A few days after the vit D test, I took a calcium test, and my calcium was 9.3 (normal range = 8.7 - 10.2). In early February 2012, my vit D was 16.5 (normal range = 30 - 100), and my calcium was 9.3 (normal range = 8.7 - 10.2).
So, my vit D amounts were low, but my calcium amounts seemed normal. Or is 9.3 too low?
Also, you wrote: "Magnesium is the most important co factor for vitamin D absorption. Vitamin D supplementation can worsen an existing magnesium deficiency."
In late August 2011, I started taking 1000 IU vcaps of vit D3. I took these vcaps four times per week, for three weeks. Then I started taking these vcaps every day.
In early December 2011, my vit D was 26 (normal range = 32 - 100), up from 13 in mid-July 2011. So, I don't think that I have a problem with absorption of vit D. This is, of course, consistent with my high level of magnesium RBC that you pointed out.
As far as my ear problems, I have experienced the crackling sound and the pulsating sensations. However, I have not experienced the noise sensitivity where everything is too loud, and I have not experienced loud ringing.
Also, my new endo says that magnesium serum is the best magnesium test. Who knows? :)
As for the theory that vit D exacerbates autoimmune disease, there is one way to test this theory. I could resume taking vit D, as my new endo suggests. After about six weeks, I could do a blood test for Anti-TPO and Anti-TG antibodies. I have never before been tested for these antibodies while taking vit D. Are there any *other* kinds of antibodies that could attack the thyroid gland?
Your calcium levels are in good range, the mid 9's. That you have vitamin D deficiency with normal calcium levels is likely to be secondary hyperparathryoidism. This excerpt from the Linus Pauling Institute:
"In vitamin D deficiency, calcium absorption cannot be increased enough to satisfy the body’s calcium needs (2). Consequently, PTH production by the parathyroid glands is increased and calcium is mobilized from the skeleton to maintain normal serum calcium levels—a condition known as secondary hyperparathyroidism. Although it has long been known that severe vitamin D deficiency has serious consequences for bone health, recent research suggests that less obvious states of vitamin D deficiency are common and increase the risk of osteoporosis and other health problems (16, 17)."
I found an interesting article from natural news titled "Know the Importance of Taking Enough Magnesium with Your Vitamin D" Wish i had read this article earlier!
"Vitamin D, just like all other nutrients, works in harmony with several other nutrients to perform its many functions. Most importantly, vitamin D requires and 'uses up' magnesium to convert from supplements or sun into its active form in the blood. As such, it is a big mistake to simply take large doses of Vitamin D without taking the need for magnesium into consideration."
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.
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.
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:
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.
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.
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?
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.
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".
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.
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?
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!
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.
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.
Hi, subire. Thank you very much for the kind words! I really appreciate them!
As for Vitamin B12, the website www (dot) stopthethyroidmadness (dot) com/lab-values
states that, for a normal range similar to (180 - 900), a good value for B12 is 800 or higher. After taking 1000-mcg Methyl B12 lozenges (made by Jarrow Formulas) every day, from mid-September 2011 to early February 2012, my B12 level in early February was 887 (normal range = 211 - 946).
However, Endo 1 (my current endo's immediate predecessor) advised me to take the B12 lozenges only three times per week, which I've been doing since mid-February 2012. As a result, my B12 level dropped. The B12 level was 637 (normal range = 211 - 946) in mid-April 2012, and 626 (normal range = 180 - 933) in late October 2012.
Maybe I should go back to taking the B12 lozenges every day.
You mentioned Liquid B Complex, and I found a Liquid B Complex product on the following website:
www (dot) gnc (dot) com/product/index (dot) jsp?productId=11535359
But this product includes Vitamin B6, and I have heard that Vitamin B6 may cause people to have intense dreams. Supposedly, Vitamin B6 helps with amino-acid production for neuro transmitters like serotonin and melatonin, which regulate our sleep and dreams.
Also, the B12 in this Liquid B Complex product is Cyanocobalamin, as opposed to Methylcobalamin, which supposedly is absorbed better by the body.
So, Liquid B Complex may not be the right product for me.
As for liquid Vitamin D, I remember finding such a product, but I think it had calcium or soy. Calcium and soy interfere with the absorption of thyroid medicine into the blood.
Once again, subire, thank you very much for your words of encouragement!
Every thyroid blood test that I've had, was administered to me BEFORE I took my thyroid medicine and BEFORE I ate anything.
I'm sort of a night owl. I go to sleep late and wake up late. I have thyroid blood tests done between 12 PM and 2 PM.
Now, the story that you tell about your own dealings with a bad endo is a little hard to understand. A little clarification may be helpful. You say that you experienced cessation of T4 and extra supplementation of T3. So, does that mean that you stopped taking T4 medicine (such as Synthroid) and started taking T3 medicine (such as Cytomel)?
Also, you say that your TSH was sub-normal. So, was the TSH value higher than the normal range? Or lower than the normal range?
And you say that a phlebotomist prescribed Vitamins D and B12 for you. Since phlebotomists (people who draw blood in blood tests) are not doctors and can't prescribe anything, I'm assuming that this phlebotomist simply advised you to take these vitamins. Is that the case? If yes, that would be kind of unusual. In my experience, phlebotomists usually do not offer any medical advice. In fact, one of my phlebotomists even told me that she had no idea was TSH meant. :)
As for your endo's saying that your macroglossia, hoarse voice, and partially missing eyebrows were caused by something other than hypothyroidism (presumably because your thyroid test results were within a certain "normal range"), that seems to be a common practice among endos. My current endo said the same thing. She, too, doesn't know what "else" could be causing these symptoms. She simply told me to talk to my PCP.
Silly me, of course I meant a hematologist....doi ! My B-12 and D levels were really low below range and my RBC enlarged. The hematologist diagnosed pernicious anemia. The brand of liquid B-12 she told me to take is NOW brand Ultra B-12, which you can find at Whole Foods but is cheaper at some health food stores. It contains all the B's and folic acid as well. The 5000 units of B-12 is sourced from methylcobalamin, cyanocobalamin, and dibecoside in co-enzyme form, which are synergistic. The only other brand she recommended was the Jarrow you have been taking, but she said the NOW sublingual was superior.
Sorry if the endo story was unclear. Also gratuitous no doubt, but to clarify...I got worse of Synthroid only and didn't get better until I took levothyroxine generic and Cytomel together. My TSH has never been high in range, but I had ALL the symptoms of hypothyroid, not just the few grosser ones I mentioned. After a year of complaining and hair loss, I was finally sent for an ultrasound, which showed nodules on both nodes. I was initially put on Synthroid "to control their growth." The symptoms got worse, but went away with the addition of T3. I tried Armour...it made me worse and I went back on T4/Cytomel and got better again. Then the drugstore changed the Cytomel to generic T3 and I didn't notice. 4 months later, I was sick again. I was sent to a series of endos, all who only looked at my T4 and of course did obsolete total and uptake tests. The one FREE T4 test I had showed the level to be at the bottom of the range which of course endos deem to be "fine" even if symptoms continue to worsen. My TSH went from its historic .89 up to 1.6 but this was considered inconsequential. Finally as my health continued to decline, my PCP took pity on me and let me get blood tests every 6 weeks for over a year that included FREE T3 tests (very low to start) and adjust the levels of my medications until they were in the middle (T4) to the upper 1/4 (T3) of the range. At that point my TSH was suppressed way below the range, but she felt comfortable with that after reading science from medical journals that I took her. She was appalled at my callous treatment by the various endos, as she watched me gain 15 lbs of edema in 3 weeks after they lowered my meds because of my TSH. It seemed pretty clear to me that I was dealing with a conversion problem, and she agreed. But then I started to gain weight and had a gradual resumption of some symptoms such as edema of the extremities and abdomen, hair loss again, leg cramps, foot spasms, and more. I went and had rT3 tested and it was high-out-of-range and with a low ratio to T3. So I had to go off levothyroxine completely for 3 months and have blood tests again once a month until the rT3 cleared. During that time, I had to take extra T3 to try to make up for the deficit. Blood tests showed my TSH still low (but this is to be expected after having it surpressed for a long time) my FREE T4 below the normal range, and my FREE T3 at the very bottom number of the range. The last endo I saw did not see fit to remark on this. Now I am back on a low dose of T4 and my usual dose of Cytomel for one month. I have to wait 2 more weeks, then go in for a new blood test and see where I am. Feeling really awful...the edema went away after a week off T4, but now has returned in spades, worse than before. Both my antibody tests have always been normal. I will test PTH at the next blood draw.....had it done only once back in 2005 when I first went to an endo. I hope that clears things up.
And yes, endos seem to always say that symptoms must be caused by something else. The last one, based on talking to me for 1/2 an hour at most, suggested I might be bi-polar (funny how my therapist never thought so..you know, the one I saw for several years for the severe depression and panic attacks that went away as soon as I took Cytomel, or the other one who said in her opinion my problem was hypothyroid) and he also posited that I was suffering from heavy metal poisoning because I take vitamins. Because he ignored my latest blood tests and ignored historic ones and because he also referred to me as both "Carla" and "Lisa" (nither of which is my name) in the letter he sent to my PCP (who couldn't believe it and told me to try to find another one) I intend to report him to my State medical board.
Meh. Lucky I had a PCP who is willing to deal with me and prescribe what I ask her for according to my blood tests, but she feels uncomfortable about it because (especially with rT3) she's exceeded her medical knowledge...she's an internist with a specialty in nephrology ! What does she know from the cursory classes in medical school long ago ? One would think that in a big city such as Los Angeles, with me being at one of the best hospitals in the city and with a PPO so I can go outside the hospital if necessary, that I could find a decent endo who would take my insurance. But NOooooooooo, apparently not.
"ALL endos should know and should inform patients of the importance of not eating or taking thyroid meds before the blood draw."
Fasting is not necessary for thyroid blood work. It's only necessary for such things as cholesterol, etc. Ask your doctor whether fasting is necessary or not.
Not taking thyroid med prior to thyroid labs, applies only in the case of a T3 med, because of the short time it gets into/out of the system. T4 meds can be taken prior because it takes them so long to reach potential.
I believe this is only YOUR opinion, Barb. I take T3 so I always have my labs done first thing in the morning, so it's a moot point for me personally. However the last naturopath I consulted told me neither thyroid medication should be taken before the test, and I've read differing opinions to yours as well. My doctor now prefers that I do not take either T4 or T3 before my labs, and the lab told me it's best not even to have had anything to drink before the test. Here is one differing opinion, from Mary Shoman's website:
"Usually, our doctors tell us that fasting is not necessary for thyroid blood tests, nor does it matter when tests are done -- particularly TSH tests. Only those patients taking an external source of T3 -- such as Cytomel, Armour Thyroid, Nature-throid, or a time-released T3 medication -- need to be aware of when they've taken their medication and the timing of testing, as T3 is active only for hours in the body, while T4, both synthetic and natural, has a much longer period of activity. Given that TSH tests reflect the impact of several weeks of medication, it's hard to argue that time of day or fasting would have an impact on the testing and results.
Interestingly, however, research by Scobbo et. al. in 2004 showed that TSH tests declined in 97 of 100 of the people studied -- by an average of 26.39% -- when compared to early morning, fasting, TSH test results. This resulted in as many as 6% of patients being reclassified from the diagnosis of subclinical hypothyroidism to "normal."
Researchers concluded that the diagnosis of subclinical hypothyroidism should not be made only on a fasting TSH measurement.
Implications for Patients
Essentially, these researchers retested patients later, when they could get a normal range result and declare the patients to be free of hypothyroidism.
Doing so, however -- retesting a patient without fasting, later in the day, in order to see if an elevated TSH level will then drop down to be "borderline normal" -- is questionable medicine, at best.
It's particularly questionable, given that researchers have not established that the earlier, fasting level results are any less valid than the later, non-fasting, "normal range" results. Researchers also don't even know how fasting affects thyroid function or TSH values, or why TSH values would be different based on fasting or non-fasting.
In some cases, if you are having your thyroid testing done along with other bloodwork -- such as glucose, insulin, or cholesterol levels done -- you will be asked to fast, and have your test done first thing in the morning. In other cases, your doctor may not dictate when to have your TSH test, or whether or not to fast. But be aware that if you test later in the day and you've eaten, you are likely to have a lower TSH level than if you test earlier in the day with fasting.
Other information actually supports the idea that patients should not take any thyroid medication the day of testing, until after tests are completed.
The Thyroid Manager online textbook mentions that
Serum T4 concentrations peak 2 to 4 hours after an oral dose and remain above normal for approximately 6 hours in patients receiving daily replacement therapy.
For this reason, thyroid expert Richard Shames, MD has the following recommendation:
I absolutely recommend that patients have any morning blood tests evaluating the thyroid before taking any thyroid medication. I have always told my patients to do it this way."
Since it is just as easy, at least for me, to go to the lab and have the draw done first thing in the morning, and since in fact when endos drew my blood in their office later in the day after I had taken my meds, my FREE T4 as well as my FREE T3 was elevated more than it was when I had the tests done in the lab before I took my meds.....and since it is easy enough already for endos to mis-diagnose labs based on their own agenda (forgive my bitterness, but this is MY experience)....I personally choose to err on the side of caution and not take my meds before the blood draw.
Because there seems to be controversy, perhaps readers should Google "thyroid blood tests" and decide for themselves. If readers want to consider actual science and not patient-oriented websites and forums, pose your question something similar to this :
"Should thyroid medication be taken before a blood test meta-analysis." By putting the words "meta-analysis" after any query you are more likely to be taken to articles in medical journals.
This is why SYMPTOMS are to be primary with blood labs being secondary to proper treatment.
Also most all the discussion talks about the variability of TSH. And most of us here know that TSH is virtually totally useless and is so variable. The discussion above is just further proof as to how variable and unreliable and obsolete the TSH test is.
As far as T4 I'm not so sure. I would seem to make some sense that the FT4 number MIGHT be slightly higher. After all you ARE putting medication onto your blood. But what significant amount that would be I guess is the debatable question. Something that we know takes weeks to stabilize in the blood would certainly suggest the single daily dose wouldn't have a very significant alteration.
T3 knowing that this is active and immediately available in hours seems clearly to suggest that T3 medication should not be taken before a test.
I think the REAL point that should be considered is that the testing time AND whether or not you have eaten and/or taken medication should be as close to 100% consistent as possible.
Then symptoms with a consistent testing lab, testing time, fasting and medication before the tests remaining constant. Compare the symptoms with the blood tests and keep adjusting slowly the medication to alleviate symptoms is what is needed. The lab numbers are relative to the symptoms, not the other way around.
One endo we've seen when asked about separating the medication from food said. Sure absorption is affected. But if you take the medication and eat similarly each day, all that needs to be done is raise the dosage to make up for any loss of absorption. In his experience he would rather have the person take thier medication when it is convenient AND consistent. The consistency of the person taking the medication and nor forgetting or what not is dramatically decreased when it best fits in with the individual persons lifestyle. In other words, he would rather just prescribe a higher dosage than would otherwise be necessary if the person was consistently taking their med with breakfast for example every day. Than a person who forgets every few days to take medication because they forgot to wait for X amount of time after eating etc.
Again I think that keeping everything consistent is most important. Whether a person wants to maximize the efficiency of the medication by separation of food and timing etc is a personal decision.
A person who does NOT take medicine and fasts for an early morning blood test seems like about the most perfect consistent thing that could be done. So I see nothing wrong with this and maybe even the best thing to do. But that may not work out for some people's life or work schedule.
I agree with you. The only part of Mary Shomen's article that interested me occurred in the section titled "Other Findings." I've never had elevated TSH yet have had every hypo symptom and low FREEs without medication, so SYMPTOM relief is certainly paramount to me. Yet I recommend the section on TSH to those who DO have classic hypothyroidism, just as a point of information.
I always have my labs drawn at the same time of day and under the same dietary conditions...it only makes sense to me to be consistent. Otherwise it would be like that old saw, comparing apples to oranges. And I always get a copy of my labs and write my current dose of medication on it for future reference. But that's just me.
TSH "Values are highest in the early morning and lowest in the afternoon"
"Thyroid Stimulating Hormone (TSH)
An indicator of thyroid function.
Normal range for an adult: 0.4 – 5.5 mU/mL
This test may be measured any time of the day without fasting."
"Do I need to fast before taking the test?
No. Fasting is not required before a thyroid function lab test."
"Thyroid function tests include: TSH, T4 and T3 estimations. All these tests may be measured any time of the day without need for fasting."
"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."
Barb, I wanted to discuss your comments about your use of Selenium.
In the summer of 2011, I was tested for Selenium and Vitamin E, two substances that aid in FT4-to-FT3 conversion. The results of the tests were as follows:
Selenium (serum/plasma) = 150 ug/L, normal range = 79 - 326, detection limit = 10
vitamin E (Alpha Tocopherol) (serum) = 7.0 mg/L, normal range = 3.0 - 15.8
Each value was within the normal range, but each value was in the lower one-third of the normal range. So, were my values too low?
When you started taking Selenium, what was your Selenium value in relation to the normal range? And what dose of Selenium do you take, and how often?
As for my heart, I previously mentioned that, back in May 2012, I took a five-day break from thyroid medicine. Shortly after I resumed taking Synthroid 125, I started feeling a loud and hard heartbeat. And I've felt this loud and hard heartbeat from time to time. I googled "loud heartbeat" on the Internet. Some said that a loud heartbeat was caused by anxiety. However, others said that a loud heartbeat indicated a possible heart problem, and my then-endo's EKG had, indeed, shown possible LVH (left ventricular hypertrophy).
My echocardiogram from mid-July 2012 seemed to show an absence of LVH. According to the report, "The LV ejection fraction is normal. The visually estimated left ventricular ejection fraction is normal at 65 to 70%."
However, the report did indicate that the atria were mildly dilated, that some 2D measurements were above normal range, and that three valves had trace or trivial regurgitation. One theory is that one or more of these things caused my loud and hard heartbeat.
Another possible cause of my loud and hard heartbeat is hypothyroidism. What is the evidence for this? Well, for starters, the loud and hard heartbeat began very shortly after I took the five-day break from thyroid medicine.
Also, I have previously mentioned my belief that Vitamin D interferes with my body's absorption of thyroid medicine. One day in mid-June 2012, I took a 1000-IU Vitamin D pill, and I felt some heart discomfort right after that. This convinced me, that the Vitamin D's interference with my body's absorption of thyroid medicine might be causing hypothyroidism, and that the hypothyroidism, in turn, might be causing the heart discomfort. So, once again, I stopped taking Vitamin D.
Furthermore, some woman said on a different message board that hypothyroidism was causing her to have "racing pulse". Well, if hypothyroidism can cause "racing pulse", then hypothyroidism can also cause a loud and hard heartbeat.
I don't remember the exact number of my selenium result, but it was in the low normal range. I take a 200 mcg capsule/day, which from my research is safe, even though the RDA is only something like 70 mcg. Selenium can be toxic if taken in too large dosages, so talk to your doctor before supplementing.
I've had the rapid, loud, pounding heartbeat a lot. I also had a complete heart workup, because of it. While all 4 of the valves in my heart leak/regurgitate, that is not what causes the loud heartbeat. Mostly it's caused by anxiety and it happens even when I don't "feel" particularly anxious and even sometimes, when I'm in the best of spirits, which can also cause a form of anxiety.
Consumption of all vitamins/minerals should be separated from thyroid medication by at least 4 hours. To be on the safe side, I take my Tirosint (T4) first thing in the morning, then my T3 about an hour later, then again around noon. I take all vitamins/minerals at bedtime to insure adequate separation.
Well, about 10 days ago, I had some new blood tests.
These blood tests included five thyroid tests (TSH, Total T4, Free T4, Total T3, Free T3). My endo believes that the Total T4 and Total T3 tests give a more complete picture.
Here are the results:
TSH = 0.446 (normal range = 0.450 - 4.500 uIU/mL)
Total T4 = 9.9 (normal range = 4.5 - 12.0 ug/dL)
FT4 = 1.41 (normal range = 0.82 - 1.77 ng/dL)
Total T3 = 106 (normal range = 71 - 180 ng/dL)
FT3 = 3.0 (normal range = 2.0 - 4.4 pg/mL)
My Total T4 level is above the middle of the Total T4 normal range, and my FT4 is above the middle of the FT4 normal range.
However, my Total T3 is in the lower one-third of the Total T3 normal range, and my FT3 is below the middle of the FT3 normal range.
To me, this indicates an "FT4-to-T3 conversion" problem.
The blood tests from 10 days ago also included tests for Vitamin E, Selenium, and Zinc. Deficiencies in these substances could interfere with "FT4-to-T3" conversion. Since Zinc is connected to Copper, and since Copper is connected to Iron, I was tested for Copper and Iron (Ferritin) as well.
Too much or too little Cortisol also can interfere with "FT4-to-T3" conversion. I was tested for Cortisol, too.
Here are the results:
vitamin E (Alpha Tocopherol) (serum) = 7.8 (normal range = 4.6 - 17.8 mg/L)
Selenium (plasma or serum) = 161 (normal range = 79 - 326 ug/L)
Zinc (plasma or serum) = 90 (normal range = 56 - 134 ug/dL)
Copper (plasma or serum) = 114 (normal range = 72 - 166 ug/dL)
Cortisol - AM = 18.1 (normal range = 6.2 - 19.4 ug/dL)
Note: I had the Cortisol test done at my "morning awakening". Because I usually go to bed late and wake up late, my "morning awakening" was about 1:15 PM. The Cortisol test, and the ten other blood tests mentioned above, were all done with the same blood draw.
Well, the Zinc is just a little below the middle of the Zinc normal range, and the Copper is just a little below the middle of the Copper normal range. The Ferritin is in the upper one-third of the Ferritin normal range. So, the Zinc, Copper, and Ferritin levels seem to be correct.
My Cortisol level seems to be in the very high normal range. Could my Cortisol level be *too* high? Could my Cortisol level be causing "FT4-to-T3 conversion" problems?
Now we come to the Selenium and the Vitamin E. My Selenium level is in the lower one-third of the Selenium normal range, and my Vitamin E level is in the lower one-fourth of the Vitamin E normal range. So, it seems to me that my Selenium and Vitamin E levels are too low. It seems that these low levels are the most likely cause of "FT4-to-T3 conversion" problems.
Well, I was thinking that I should start taking Vitamin E supplements and/or Selenium supplements. I could start out by taking the lowest doses of these supplements (400 IU of Vitamin E and 100 mcg of Selenium), three times a week. I could take these supplements with my 1000-mcg Vitamin B12 supplements, which I also take three times a week.
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