My story: 39yo male, diagnosed some months ago with Hashimoto. Started taking 50mcg (levo). Practily on the next day felt completely drained and stiffed. Made consultations with 3+ doctors ... "We don't know what is the issue, maybe another disease." My dosage was lifted to 75mcg (I struggled with levo for 4 months). Again after a day or two, I felt even worse. After reading here (thank you guys!!!) I found out about rT3. Made a test, my results are: 365pg/ml (lab ref: 90-215). I'm struggling with chronic prostatitis for 4 years. I think this caused the T4 to T3 conversion problem so I decided to take T3 directly.
It was a very slow process (months) but now I'm on 140mcg of Tiromel. The problem is I don't feel better, even a little. I can't leave my app for 7 months now ...
All my other blood tests look fine (ferritin etc)
My questions are:
1. Before starting levo I was tired but not completely drained. I don't understand why. My body was producing T4 for sure. Why the super drain was started only after started taking levo?
2. On 130mcg (T3) I started to feel even worse. Super stiff (more than before), joint pain (didn't have those before). Why? Is this related to T3 forcing my body to stop producing T4? (I will make blood tests soon, going to the lab is a challenge ...)
3. I know I have no other option but continue to up my dosage, but are those things normal?
Any thoughts are welcome but someone experienced on T3 only will be great.
Thank you in advance guys! <3
Best regards
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Maniacos
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Are you sure you are hypothyroid? You initially had a slightly raised TSH but do you have fT3 or fT4 figures from before you started taking thyroid hormone? You switched to Tiromel and mentioned a number of times you were feeling dizzy, vertigo is a sign of thyrotoxicosis. It's not a case of adjusting to T3, if you get vertigo you are on too much hormone, you may get used to higher doses but harm will be done.
Stiffness and joint pain could be due to low magnesium levels. This can occur in hypothyroidism and also in hyperthyroidism. As yours is made worse by increased doses of Tiromel it suggests you are now thyrotoxic (hyper).
Some patients do need very high doses of L-T3 to get better but these patients tend to respond to increasing doses without signs of there being too much. It looks like your problem is not due to hypothyroidism, lots of people have raised TSHs.
Yes, I'm sure. Antibodies tested too, went to multiple doctors. I have 0 hyper symptoms at this point. I'm not dizzy anymore. That was a temporaty effect of rising T3, it passed after a week. My problem (I think) is T4 to T3 conversion, very high rT3. And I think I have a weird/rare condition (ncbi.nlm.nih.gov/pmc/articl... this kinda fits). The fix is T3 (or T4). I can't take T4, I tried. As I said, my other things (magnesium levels) are ~ok. I just don't understand If this is normal behavior. Thank you for your input!
I haven't been in touch with all your previous posts but I got the impression you are not better off since you started thyroid hormone. One point I forgot is have you had a blood test since you have been on high dose Tiromel, just to check it is genuine medicine and you are absorbing it. Have the blood taken about half-way between doses of Tiromel and I would expect your fT3 to be high, it it's not there's something fishy going on.
I'm making the blood tests in the morning. This 'between does' is new to me? My morning test was relatively low fT3 (in the middle). But I need to check if tests need to be on another time. But no matter the test I feel bad ... The whole situation is super bizarre and our doctors here don't even use T3 ...
If you take the blood within a few hours of taking thyroid hormone the blood test will give wrong results, the hormone will not have had time to be bound to proteins, so the free T3, free T4 will look high.
If you take the blood a long time after your last hormone dose T3 in paticular will give a false low reading because it has a short half-life.
Thus, taking the blood about half-way between doses will give a rough average. This matters for patients on T3 medications. If you are only taking levothryoxine it doesn't matter much because levo has a long half-life.
I would be very reluctant to increase dose if you are treating yourself. You are taking a colossal amount. RT3 is an automatic way that T4 works i.e T4 converts to RT3 then into T3.
Unfortunately there's no 'quick fix' when hypo because dose has to be gradually increased. If you feel (if your self-medicating) symptommatic you only increase by a very small amount every 2 weeks (1/4 tablet) until symptoms are relieved. As 25mcg of T3 is equal (approx) in 'its effect' to 100mcg of T4 you are on a huge dose. Do you have Thyroid Hormone Resistance?
We slowly increase dose - and it takes time even for levothyroxine to be absorbed into the body. Levothyroxine is an inactive hormone, i.e. T4. T4 converts to RT3 and then intoT3 and it is T3 which is required in our millions of T3 receptor cells. (there seems to be some confusion about RT3).
I think you should start from the beginning again and I am not medically qualified. I take T3 alone and am well. One of TUK's deceased Advisers had Thyroid Hormone Resistance and his dose was 150 per day. He took it in the middle of the night so that nothing interfered with the uptake. He was well, had no symptoms and was able to do his work. Read the Safely Getting Well on the following link etc which is by Dr Lowe and I hope it helps.
'T4 converts to RT3 then into T3'. T4 is converted to T3 by type-2 deiodinase (D2). D2 increases in hypothyroidism. T4 is converted to equal amounts of T3 and rT3 by type-1 deiodinase (D1). T4 is converted to rT3 by type-3 deiodinase (D3). D1 and D3 both increase in hyperthyroidism. So there is no conversion of rT3 to T3. (I don't think you meant to suggest there was, it just comes across the wrong way).
It's thought converting T4 to rT3 is a mechanism for reducing thyroid activity in cases of hyperthyroidism or when the body wants to slow down e.g. during starvation or severe illness.
The points about taking it slowly are pertinent. Even if the hormonal balance could adjust within a short time the metabolic effects take a long time to feed through. Things like the build up of mucous in hypo and muscle wastage in hyper take quite a while to correct.
Thank you and I couldn't find Dr Lowe's comment earlier today but it is as follows:-
"Dr. Lowe: Some readers will not be familiar with reverse-T3, and I know from experience that many others harbor misconceptions about the molecule. Because of this, I have summarized in the box below what we know about reverse-T3. I've answered your question below the summary.
Conversion of T4 to T3 and Reverse-T3: A Summary
The thyroid gland secretes mostly T4 and very little T3. Most of the T3 that drives cell metabolism is produced by action of the enzyme named 5'-deiodinase, which converts T4 to T3. (We pronounce the "5'-" as "five-prime.")
Without this conversion of T4 to T3, cells have too little T3 to maintain normal metabolism; metabolism then slows down. T3, therefore, is the metabolically active thyroid hormone. For the most part, T4 is metabolically inactive. T4 "drives" metabolism only after the deiodinase enzyme converts it to T3.
Another enzyme called 5-deiodinase continually converts some T4 to reverse-T3. Reverse-T3 does not stimulate metabolism. It is produced as a way to help clear some T4 from the body.
Under normal conditions, cells continually convert about 40% of T4 to T3. They convert about 60% of T4 to reverse-T3. Hour-by-hour, conversion of T4 continues with slight shifts in the percentage of T4 converted to T3 and reverse-T3. Under normal conditions, the body eliminates reverse-T3 rapidly. Other enzymes quickly convert reverse-T3 to T2 and T2 to T1, and the body eliminates these molecules within roughly 24-hours. (The process of deiodination in the body is a bit more complicated than I can explain in this short summary.) The point is that the process of deiodination is dynamic and constantly changing, depending on the body's needs."
Thanks, this is a good explanation. There is one tiny error: 5'-deiodinase is not the enzyme but the activity of stripping an iodine atom from the 5th position of the outer ring to make T3. The enzymes are D1, D2 and D3. Sorry if I'm confusing anyone, this is just a technical point. The main issue is whether Maniacos is hypothyroid and what their current hormone levels are.
I was interested to learn about this rare condition, but the link doesn't work.
Just because your magnesium blood test said your levels are good, doesn't actually mean they are, due to the way the body handles magnesium. It will almost always be in-range. If I were you, I would try taking some, anyway.
The fact that rT3 is high means that there is a problem somewhere, but the test doesn't tell you what the problem is. As you are taking T3 only, it's not due to a conversion problem, so you need to find out what that problem is: have you had some sort of infection or injury? Do you take Beta Blockers? Do you have low ferritin or high cortisol?
Also, as your thyroid is obviously still making some T4 (otherwise you wouldn't have any rT3) it could be the high dose of T3 you are taking that is causing that T4 to convert to rT3. Over-dosing on T3 can cause high rT3. But, if you're not absorbing the T3 properly, then that wouldn't be the cause. You need labs on this high dose to find out how much you're absorbing. Do you split your dose of T3? Do you always take it on an empty stomach, etc. just like you would levo?
rT3 is not a problem in itself, but it does indicate a problem. It doesn't cause symptoms, or block T3 receptors or anything like that - and it certainly doesn't convert to T3! It converts to T2 after a couple of hours. But, you efforts should be directed at finding out why it's high.
Sadly everything said is opposing to all the articles about high rT3 . So all became much more confusing. My 1st question is still mega bizarre: "1. Before starting levo I was tired but not completely drained. I don't understand why. My body was producing T4 for sure. Why the super drain was started only after started taking levo?" This kicks out any hormone resistance and etc. I'm self-medicating because our doctors think T3 is some kind of poison ... It's not even sold here
I would imagine that all the articles you have read on rT3 are rather old and out of date. Research has moved on and we now know more about rT3.
1. It's the sort of thing that can happen when you start levo. It happened to me. Starting out on levo can sometimes lower your T4 rather than raise it, because the thyroid stops production, and the levo you are taking is not enough to even replace it, let alone raise the level. Do you have labs from the time you were diagnosed and your labs after the first six weeks? They might show something of the sort.
Most doctors think T3 is some kind of poison. They have no idea what it does because they do not learn about it in med school. Their education in thyroid is brief and scant, and does not equip them to successfully treat patients that do not react well to levo.
Hardly surprising that small doses of Levothyroxine left you exhausted. Most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine. Guidelines are 1.6mcg Levothyroxine per kilo of weight
You were likely never on high enough dose
How are you taking this enormous dose of T3?
As several smaller doses per day?
After each 5mcg dose increase in T3 it's important to wait and let levels settle. Bloods should be retested 6-8 weeks after each 5mcg dose increase
It's incredibly easy to miss the sweet spot.
Over medication symptoms can be remarkably similar to under medication results
when on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Suggest you get bloods tested including vitamin levels
it's not the levo dose the problem. I was 4 months on it. I'm not just tired. I can't make more than 3 squads and I'm not overweight. My strength just vanishes. Bigger dose = worse feel. I take T3 5 times a day. Those "8-12 hour" fits my blood testing. My last dose is right before going to bed. Everyone is advising different things Hopefully, someone with rT3 problem/experience will chime in.
Muscle weakness is a sign of being hyper or overmedication. That's why you feel worse with a higher dose. I suspect you are on too much T3 and have missed your sweet spot. Too much rT3 can be caused by overdosing T3 (if you still have a thyroid gland), as well as stress and acute or chronic illness, or calorie restriction. It's a also a marker of heart disease risk. How do you manage to fit in 5 doses and still leave an hour before and two hours after food? I had enough trouble trying to fit in 4 doses, so I eventually went back to 3 doses a day.
It's not overmedication or hyper because it started on a 50mcg dose of levo. I have a chronic illness (prostatitis) and that why I thought I have a conversion problem, but T3 only didn't help at all Doses are
I am not offering to explain any of it! You'll have to do your own research. The reason everyone is suggesting different things to you is because thyroid issues are complicated and lots of different things can go wrong.
One thing that nobody else has suggested is that the first time you took levo and reacted badly to it might have been because you have problems with the excipients/fillers that are used to turn the active ingredient into a pill. This is very common. The best way of testing this is just to try a different brand of Levo and see if it has any impact on your symptoms. It is also possible to try liquid T4.
Another thing that could be relevant is your cortisol levels. Adrenal function is badly affected by low thyroid hormones. Theoretically the adrenals ought to return to normal function when missing thyroid hormones are replaced, but this doesn't always happen.
I had high levels of reverse T3 when I first started treating myself. I also tried high doses of T3 because I got no benefit from T4/Levo. I seemed to be remarkably resistant to the effects of T3 and at the highest level I was taking 200mcg of T3 per day. I got scared by this high dose and dropped back to 150mcg of T3 per day. A few weeks went past and then one day I "went hyper" in dramatic fashion. I had to stop taking the T3 cold turkey because even the tiniest dose would make my heart go crazy. I tried T3 again after about three months, but I was no longer resistant to it and could only take about 25mcg per day or less, which I was pleased with from a financial point of view. I couldn't have sustained a dose of 150mcg or more on a permanent basis, it would have been far too expensive.
Another issue with getting benefit from thyroid treatment is you must have reasonably good levels of vitamins and minerals. If you haven't tested the basics (iron, ferritin, vitamin D, folate, vitamin B12) then you really ought to. If money is no object then I would add zinc, copper, vitamin A and testing more B vitamins to your list, but most of us get by without these.
Maniacos 😔 your poor thing. I was only housebound for 3mths but I can emphathis with how you are feeling. I’m so sorry you haven’t found any answers. Maybe you jut don’t react well to synthetic hormones? Have you thought about a more natural solution like NDT?
You left me quite confused guys My plan is to make blood test on this level very soon (I will ask for someone to come by, to avoid going there. I tried to do a squad today and fell down ... this is my strength level...) I plan to deal down my T3 intake to get a little bit more strength (full stop sounds a bit too much ? I spend 7 months to go to this level) because I found new doctors here in my city. Professors! My question is:
What kind of blood tests to do? I want all possible ideas.
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