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I've been on 50 mcg levo for 6 years. 50-year-old male, 5' 11" 215. Got Covid two years ago and my Thyroid went a little crazy. Dr first sent me to a neurologist based on my symptoms but nothing turned up.
Sent me next to an Endocrinologist.
I have every symptom of low T4. Every symptom no joke.
My reading last year was .73. Our hospital's low range was .60 so my Endocrinologist told me my Thyroid was fine (had it scanned too with very small nodule that was all that was noted) and that I probably had a food allergy.
But in doing research I'm seeing the low range for T4 at several major leading hospitals is above the .60 my hospital refers to and above the .73 that I had.
Mt Sinai is .90 at the low end, Rochester is .90, Cleveland Clinic is .90, Harvard .80, John's Hopkins .80 etc...
Has anyone else had experience with this and have any advice? Clearly my Endocrinologist is sticking with the .60 that may come from Labcorp. But is .73 low enough that this needs addressed since if I was a patient at the hospitals I mentioned my free T4 would be below their lower limits?
First, and most important question, how do you feel? Do you have sex drive? Energy? 210lbs at your height is obese.
If you feel fine, I wouldn't do anything. Check your Iodine levels and exercise more. Once you lose some weight, re-take that test. And take it in the summer, not the winter.
The TSH is more stable but that can have fluctuations throughout the day. One tries to target the TSH to within the reference range. Some doctors might prefer a low reading within the reference range or a higher level within the reference range based on your own medical history.
As far as the free T4 goes one has to go by the laboratory who performed the test to determine the reference range to use. There is no standardization of methods and procedures as each testing method is patented by private companies. The two main methods involve free T4 by two step immunoassay and then we have the reference method which is a technique by equilibrium dialysis. The method is much more difficult to perform and very operator dependent.
One uses the TSH to assess thyroid status with primary hypothyroidism. The assumption is and proven with a mathematical model correlating the TSH to be inversely proportional to the free T4. The exception is when one has a normal TSH and one finds an aberrant free T4. Under these limited situations then the free T4 by dialysis is very helpful in situations of central hypothyroidism. It is also helpful in non-thyroidal illness and in exogenous interference.
Some medications can impact thyroid status and some medical conditions can also cause alterations apart from primary thyroid disorders. Under these situations they body can resist increases of thyroxine by shunting excess thyroxine into reverse T3 rather than regular T3.
There are other tests that thyroid status can impact like SHBG and other tests for which one can assess thyroid status that is separate from TSH and free T4. That's one option if one is still disputing if one is euthyroid or not.
The young docs seem to have a propensity for treating lab tests, not patients....You state that your sypmptoms all seem to suggest low thyroid activity, but symptoms of that are just general "I don't feel good" complaints which are common to life & aging in general. You don't get the real, specific symptoms of hypothyroidism until your levels are really low.
You also claim your troubles started with CoViD two y/a...Any viral infection can cause an acute or subacute thyroiditis, which really screws up thyroid function tests in a way that don't seem to make any sense, and they usually return to baseline normal within weeks to months without any intervention.
The best lab indication of under-active thyroid, as MLG poiints out above, is the TSH. If yours is in the normal range, then your pituitary gland thinks you have the right amount of circulating, active thyroid hormone, and the goal is to make the pitutary happy.
BTW- 50 ugm of thyroxine is about half the dose that 95% of pts require. Also as MLG points out, there is a small argument about what the treatment goal should be when giving thyroid replacement -- Some think giving enough to get the TSH into normal ranger is appropriate...but that would mean that the pituitary thinks the thyroid gland still needs some encouragement to make more T4 to make up a deficit....I always shot for a TSH in the low end of normal and also checked T4 levels to make sure it wasn't too much.
You've been treated for six years. The treatment is merely replacement therapy- It doesn't treat the underlying cause-- usually a form of autimmune impairment of gland tissue. It's been progressing for at least six years, so the small dose that still required some of your own thyroid activity to make up the shortfall (indicatd by normal TSH) is no longer adequate.
The young docs seem to have a propensity for treating lab tests, not patients....You state that your sypmptoms all seem to suggest low thyroid activity, but symptoms of that are just general "I don't feel good" complaints which are common to life & aging in general. You don't get the real, specific symptoms of hypothyroidism until your levels are really low.
...
BTW- 50 ugm of thyroxine is about half the dose that 95% of pts require. Also as MLG points out, there is a small argument about what the treatment goal should be when giving thyroid replacement -- Some think giving enough to get the TSH into normal ranger is appropriate...but that would mean that the pituitary thinks the thyroid gland still needs some encouragement to make more T4 to make up a deficit....I always shot for a TSH in the low end of normal and also checked T4 levels to make sure it wasn't too much.
...
Thanks GLM for admitting that (especially) young docs don't care much about subjective symptoms and go for the lab test. That, in conjunction with minimally dosing hypothyroidism means that lots of patients end up feeling just barely okay for the rest of their lives. I found a doctor who allows me to stay at the minimum of TSH and also lets me take some liothyronine since I'm a poor converter - it really helps to be listened to.
As for OP - yes, you may be due for a higher dose. I don't think you gave your TSH - because it's more in range and you want to use FT4 to dose from? As long as you still have your thyroid both tests should be consulted to get a fuller picture.
In over 40 yrs of practice and dozens upon dozens, if not hundred of pts with hypothyroidism, I only came across one who had been stable for 20 yrs on the same 100ugm dose, then gradually started showing dry skin, lethargy, somnolence, anemia etc. His T4 remained in the normal zone, but TSH was drifting up. His Free T3 was low- his ability to convert T4 to T3 (the active form of the hormone) had apparetly become impaired.
I decided to play it cute and add in the Liothyronine. After a few months of screwing around trying to titrate it accurately, we just gave up. We went to a higher dose of thyroxine and let his own conversion abilities figure out the details...After all-- it's not the T4 per se that accounts for the symptoms of over-active thyroid, it's the level of the T3 that counts.
Hey, MLG- if you're still listening-- how accurate are free T3 levels and do they cycle much normally?
OP, in addition to a thyroid supplement, you need a thyroid support formula. The thyroid needs trace elements of iodine to function properly (key in the production of T4), and selenium, to name just two important thyroid support components. As a thyroid patient, you're going to have to do your own research; you're going to have to inform yourself in greater detail, because most MD's, even endocrinologists, are a bit out to lunch on thyroid. Or you could look for a doctor who works independently of insurance, which means you pay him/her for their time out-of-pocket. Some of those docs stay on top of the latest thyroid research and innovations, and are much more knowledgeable than most PCP's and specialists.
For starters, you could go on the website of a company called Biotics Research, and look at their thyroid products, to begin exploring this aspect of thyroid treatment. They have one called Thyrostim, that provides thorough thyroid support. The company requires patients to be referred by their doctor in order to buy from them directly, but you can find their products at online vendors, some of whom are people with a medical background who have studied thyroid. Amazon also carries their products.
You could consider this to be the first step in your thyroid self-education. You could try the support product for a few months (along with your thyroid supplement), then test to see if there's a difference in your lab results.
In over 40 yrs of practice and dozens upon dozens, if not hundred of pts with hypothyroidism, I only came across one who had been stable for 20 yrs on the same 100ugm dose, then gradually started showing dry skin, lethargy, somnolence, anemia etc. His T4 remained in the normal zone, but TSH was drifting up. His Free T3 was low- his ability to convert T4 to T3 (the active form of the hormone) had apparetly become impaired.
I decided to play it cute and add in the Liothyronine. After a few months of screwing around trying to titrate it accurately, we just gave up. We went to a higher dose of thyroxine and let his own conversion abilities figure out the details...After all-- it's not the T4 per se that accounts for the symptoms of over-active thyroid, it's the level of the T3 that counts.
Hey, MLG- if you're still listening-- how accurate are free T3 levels and do they cycle much normally?
I have never treated a patient so I have to use logic. If somebody is diagnosed years ago based on symptoms and laboratory findings and is treated effectively in the past based on those symptoms and quantities then that means something. If things change then one needs to know if the issue is a a primary thyroid issue or are we seeing things based on nonthyroidal alterations in the thyroid testing. People with hypothyroidism are not immune to those changes. Simply looking at thyroid hormones and TSH are not going to answer that question as each can change.
"Endocrine Society
View all recommendations from this society
Released October 16, 2013*; updated July 17, 2017
Don’t order a total or free T3 level when assessing levothyroxine (T4) dose in hypothyroid patients.
T4 is converted into T3 at the cellular level in virtually all organs. Intracellular T3 levels regulate pituitary secretion and blood levels of TSH, as well as the effects of thyroid hormone in multiple organs. However, T3 levels in blood are not reliable indicators of intracellular T3 concentration. Compared to patients with intact thyroid glands, patients taking T4 may have higher blood T4 and lower blood T3 levels. There is controversy as to whether a normal TSH reflects adequate intracellular T3 levels in all organs, However, even in patients taking both levothyroxine and liothyronine, there are no data suggesting that the blood level of total or free T3 correlates with a patient’s clinical response. Therefore, in most patients a normal TSH indicates a correct dose of T4. "
You couple that with hypothalamic-pituitary-thyroid axis changes that are not related to primary thyroid disease then one ends up running blind. Before going that route I would try and do additional testing to assess the peripheral markers of tissues and organs thyroid status like SHBG and BNP and others to see if levels are high or low. If low and we have a normal TSH then one is implicating central hypothyroidism or or isolated TSH deficiency. Typically that is a sign of hypopituitarism and other pituitary hormones should be assessed. One would also repeat the free T4 and use another manufacturer to rule out laboratory interference or do a T4 by dialysis. There is a relationship between the TSH and the free T4 and the reason for that discrepancy needs to be investigated.
That's what I would be looking into if that happened to me. I prefer hard evidence rather than simply making assumptions.
Have you tried supplementing vitamin D (dosage > 15000 iu), zinc and magnesium ?
I am not a doctor, but in your position I would apply the same treatment that men with low T do. No sugar, no drugs/no alcohol, low carbs, veggies, healthy fats, poultry meat oily fish and eggs. Intermittent fasting. Sprinting and working out, weight loss (how about getting under 200lbs), natural supplements. Become a fitness freak. The whole nine yards.
Low T4 could mean low T which in turn will mean decrease of muscle and bone mass over time, low drive etc...
I prefer hard evidence rather than simply making assumptions.
In perfect world, that would work well. But the world isn't perfect and individual differences make pooled data and averages meaningless for so many things....
That's why the TSH is a good indication of what the pituitary 'thinks" is going on physiologically for that individual...
...but logically, a "normal" TSH means the thyroid gland needs encouragement to put out some T4 --> exogenous T4 + residual endogenous T4 = normal T4...Because exogenous T4 does nothing to address the underlying, presumabley continuing damage to thyroid tissue, dosing should need to be increased over time if you're aiming at a normal TSH as endpoint of titration....It makes more sense just to provide all exogenous T4 and not to depend on residual T4 secretion....It would also tend to discourage the probabilities of development of autonomous thyroid nodules....(edit--just thought of an analogy-- When you build a fire in the fireplace to heat your cabin, do you turn the thermostat on the furnace off, or do you just turn it down, then monkey around with adjustments trying to get the room temp just right?)
I suspected that about free T3. I rarely even ordered free T4. It's kinda like counting your cows as you drive around the pasture each day-- You can count heads, or you can count legs and divide by four. Given that three- legged cows aren't too common, your conclusion will usually be the same either way.
Another edit, cuz my last comment reminded me of an experience-- Last summer I was driving down the 2-lane past a farm house one Sunday afternoon, and I saw a farmer resting in the shade of a big oak, a little kid palying witha balll on the lawn, and walking across the lawn was a large hog with a wooden leg...I just had to stop and ask the story---"Well," says the farmer, "A month ago, my kid was playiing out here alone and a coyote came out of the woods, stalked him and was about to pounce when that hog jumped in, attacked the coyote and scared him off...Well, we were so grateful to the hog for saving the boy's life that we just didn't have the heart to slaughter it all at once...."
Last edited by guidoLaMoto; 02-09-2023 at 05:29 AM..
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