So my mum was recently prescribed T3, alongside the T4 she's been taking for over ten years. She has Hashimoto's, the worst symptom being severe fatigue.
She was prescibed .175 of T4 and 15mcg T3 split over 3 doses per day.
Her recent results after this change in medication are attached.
After a week of the T3 being introduced, she felt great. This lasted about a week and a half, before her fatigue returned. The endo has prescribed now prescribed a lowered .15 T4 and raised T3 to 20mcg daily broken down throughout the day.
Also had her on D supplements to raise her levels up.
Why did she feel normal again for that week and then crashed? What should we try next?
Anyone have any ideas? The experience has been a little discouraging.
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kendrewaddams
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Did she start on the whole 15 mcg T3 at once? We usually recommend starting on 5 mcg for a week or so, then adding in a second 5 mcg for another week or so, and then the final 5 mcg if necessary. Starting on 15 mcg T3 is usually too much for people.
How long had she been on 15 mcg T3 when those labs were done? Does she always take her T3 on an empty stomach well away from food/supplements/other medication, just like levo?
Sorry for all the questions, but without knowing all the details it's hard to have any ideas.
OK, well that could be the problem then. To high a dose too soon. Maybe she could stop the T3 for a couple of days and start again? See if she feels better going up slowly.
I don't doubt that's what her endo told her to do, but that doesn't automatically make it the right thing to do because endos know little to nothing about thyroid treatment - especially T3.
Because with hormones - all hormones: levo, T3, HC, testosterone, HGH, you name it - you need to start low and increase slowly. You need to give the body time to get used to them - especially if you've been without for a long time. The body adapts to low hormones in order to cope and keep you alive. Receptors get turned off and have to be slowly switched on again. Start taking hormone replacement and the body has to adapt again. Flood the system with high doses and the body goes into shock and can't tolerate it.
Endos often do this, prescribe too much in one go. Partly out of ignorance, but I do wonder if they don't do it deliberately, setting the patient up to fail. Especially in the UK, where there's this terrible problem with the cost of T3.
I don't think you're allowed to name doctors on here. And maybe he was recommended on here, but that doesn't mean he's perfect. I've never seen him myself. But, telling a patient - especially an elderly patient, as I imagine your mum must be - to start T3 at 15 mcg doesn't say much for his knowledge of treating hypo patients. Sorry you don't like what I'm saying, but experience, plus all the reading I've done on here, informs me that's often the way it is.
I’ve had this effect. I have Hashimotos and a poor converter of Levothyroxine to active T3. Also positive DIO2 gene test. My main symptom when not optimally medicated is severe fatigue. I get this when under or over medicated. I’d suggest that if your mum felt great for the first week and a half on T3 then crashed that it sounds like she’s gone over medicated. I’d reduce the Levothyroxine T4 snd keep on the same original T3 dose. If you change both medication doses at the same time you won’t know which one has worked for you. I’d reduce the Levo first as it looks high in the blood test results whereas the T3 looks fine especially if she left a number of hours from her medication ingestion to the blood draw. If so, as soon as you take your meds within a couple of hours it’ll spike. And if this is your regimen then after a few days your TSH will display a suppression. TSH is much slower to react in blood results than the T3 or T4 readings as this is the reading of medication in you at that point in time.
I’m better if my T4 is middle to low in the range snd my T3 in the middle leaving out my medication the morning I have a blood draw. If I go over medicated my legs crumble snd I lose energy very quickly. As soon as I taper back the meds, mainly Levothyroxine fir me, I’m fine again.
This is extremely helpful thank you. This sounds like my mum. How long a period would you recommend after each change in doses to see if it's had a positive effect?
I’d leave it for about 6 weeks when you’ve altered your Levothyroxine unless your mum doesn’t improve or feels worse. But you should feel a positive response within days. Well I do. T3 acts much quicker than Levothyroxine. So if you change the T3 dose later you should see a difference within 7-10 days max. Usually I feel an immediate response with T3 in about 1/2 days. If reducing the Levothyroxine works though I’d not alter the current T3 dose and carry on with just lowering Levothyroxine. How much are you thinking of reducing Levothyroxine by. I’d say no more than 12.5 then if that doesnt work try 25 and see how that goes. T3 is much more powerful than Levothyroxine and reacts much more quickly. Do you leave 8hrs between each T3 dose. I also split my Levothyroxine into two doses. For some reason I can’t tolerate my dose in one go anymore. I’m now on liquid which makes it very easy to split a dose an tailor it to suit your needs. I get the Wockhardt brand. It’s more expensive than tablet form. I was prescribed it to rule out any interference with excipients. To be honest I felt no difference from tablet form but it is brilliant for measuring your own dose each time. You can up or decrease in very small amounts as it’s liquid.
Hi!!I take 5mcg T3 7am. 32mcg Levothyroxine 12 noon. A further 5mcg T3 at 3pm and then my last 32mcg Levothyroxine at 4.30pm. Sounds like a phaff. I used to just take Levothyroxine once a day on waking but for some reason I don’t understand I can’t tolerate doing it in one go anymore. I’ve tried a few times but end up very very weak suddenly. So I stopped trying and splitting it was the only way I could take the right amount.
That's interesting, and unique that you found this way of dosing. When you started taking T3 upon waking, did you start w/2.5 and work your way to 5? Or just 5 right off the bat? Did you get a fast heart rate when you started T3? Your past struggles were similar to mine now and I have been given T3, but just don't know how to get past the fast heart rate. If you had a fast heart rate, did eventually go away as your body got used to it?
Hi. I started straight away on 5mcg twice a day. I didn’t work up my doses. I’ve never had a fast heart rate on T3 medication nor Levothyroxine. I wear a Nike Apple Watch and my heart rate is monitored while I wear it. I use to feel as though my body was racing before I started T3 but wearing the watched showed my heart rate was fine. I believe the feeling I was getting was my body trying to convert the Levothyroxine I’m not entirely sure though. I’ve had my heart checked in hospital and I have no issues whatsoever with it. Do you wear a Fitbit or watch to track your heart rate. Could it be adrenaline surging? I use to think it was adrenaline but my cortisol was very low.
I have one of those things you put on your finger for pulse/oxygen. When I took only a 1/4 of a 5 T3, my heart raced for about 20mins then went back to normal. I tried this around 2:30pm. I initially felt a good feeling for about 5 mins before the heart palps. After they went away, I felt very brain fogged and out of it for hours. I really didn't understand that, and such a tiny bit. Any clues? Is it cortisol?
It doesn’t sound good does it really. I’m not sure why you felt so wrong after taking T3. Did you say you’ve had one adrenal gland removed in an earlier message? If so, it could be down to that. Are you on hydrocortisone medication? It could be that too if you are. I’ve read that any adrenal issues should be sorted before taking T3 medication. I had very low cortisol before taking T3. I didn’t have adrenal issues though as I had a Synacthen test to prove that. Mine was low due to low T3. Higher T3 when medicated boosted my cortisol. I’m sorry I don’t have the answer I’m just going on my own personal symptoms and diagnosis. Are you vitamins optimal this could help. Eat plenty of citrus fruits.
My Vit D is low I know that. I 'was' supplementing until I was told to stop because the active vitamin D was high normal. I need to get that tested again, and have a lab for it. I had a surgery in June so my iron was 70 (27-159). My NP says she likes it as 70?? That's not even half-way through the range. Ferritin was 57 (15-150). I had a Cortisol blood test was 13, which is avg, but my saliva cortisol came back high normal morning and all points after that high. So my cortisol is all messed up right and not taking anymore Cortef for months, and I feel terribly weak and lightheaded. Unintentionally lost weight and it's not good. Yes, had one gland removed. Either the remaining finally woke up and doesn't know what it's doing, or I'm screwed. Saliva look like Cushing's but I look and feel like Addison's. Have been taking Levo alone for the first time since Dx 6/7 years ago, and it's been really tough. I cannot stand thyroid medication, but without it I feel worse. I should probably start my own post! I'm sorry for going O/T. But was really interested in your regimen. I remember when you were low in cortisol, and I was too, but I took Cortef. I too failed Stim test, but still needed the Cortef. Only took 7.5 once in the am. I miss it because it was the answer to my constant light-headed dizzy feeling. I only get relief from it in the middle of the night and early morning. After that, my day is ruined with weakness and dizzyness. UG.
Well something is definitely not right. I’m so sorry I wish I could offer some help or hope. I’m only going on my own experiences here. Do you check your blood pressure regularly. It might be worth checking especially when you feel dizzy. But that’ll be a symptom maybe and not the root cause. I’ve never heard of someone having an adrenal gland removed before, was it down to cancer. Sounds like with your high heart rate, weight loss and dizzy ness it’s more over active than under. Have you had your pitruity gland checked. You mention cushings disease has this been investigated by a Dr. I truly wish I had some guidance for you here but I’m at a bit of a loss. Could you start a new post asking for help and someone may spot it who has similar issues. I wish I could help more. Do you eat plenty of fresh food, oranges, bananas, grapefruit, apples. Salads, fresh tuna etc. This is my main diet these days with the odd cake thrown in for my happy state of mind. Oh and a vodka or two now and then.
Thanks very much. My mum has been saying that she feels her Levo is too high, it's a particular feeling she gets from it apparently, so this may also be an issue.
I think over the years, the Drs have just upped her Levo to silly amounts, because it wasn't working so they thought she needed more.
Another thing - in the past when they upped her Levo, she would experience a similar effect to the T3, she would feel good for a week then slump again. Do you have any experience with this?
Yes I have. My Dr upped my Levothyroxine when my TSH was high. They hadn’t tested my T3. Within about 6 weeks I was so weak I could hardly move. At this point I wasn’t on T3 medication yet. My heart rate dropped into the 40’s. I collapsed at home. I didn’t faint I just couldn’t hold myself up or get off the floor unaided. I was taken to hospital. When they did my bloods after this Levothyroxine increase my TSH was suppressed, T4 was over range and my T3 was just scrapping in at the bottom of the range. Over medication on Levothyroxine has this effect on me. This confirmed I am a poor converter but the NHS refused to trial me on T3 medication. My cortisol was also low. Ferritin was too low and B12 also too low. As soon as I started the correct dose of T3 everything changed for the better with such positivity. I only need 5mcg twice a day 8hrs apart with 65mcg Levothyroxine now. I’ve just reduced my Levo from 75 to 65 a day split into two doses and I feel much better. I have had the DIO2 gene test and was positive. Has your mum had this test.
I’m 62 and piled on loads of weight being poorly medicated over years. Since introducing T3 I’ve lost 4.5st without even trying to and feel about 20 years younger. I dont know why I get so fatigued if I go under or over medicated. It’s like my body’s alarm system or something warning me to stop the amount of medication. It’s like trying to drive with the handbrake full on. My body feels extremely heavy and I have no energy to hold myself up let alone walk.
You can get the DIO2 gene test through Regenerus Laboratories. It costs about £85 for the test. You can get a person to call you and interpret the result for you. This adds about a further £65 or so. On the form they’ll ask for your practitioner. Just put Thyroid UK this is acceptable to them. Doing it this way you get the result and not your Dr. The test checks to see if you have the faulty DIO2 gene. You can have it from one parent or both. If positive that proves you poorly convert T4 Levothyroxine to T3 and should do better on combined treatments. A positive tests takes about 3 weeks. Family members should also take the test if you are positive. I took my positive result to my GP. It’s now scanned on my NHS file. I’ve checked it on my Patient Access, do you have Patient Access? I now get T3 Liothyronine off the NHS. They can’t argue with the facts. But I did also get a 3 month trial privately first through my private only Endocrinologist in Oxford who also helped me no end to get well. The NHS basically abandoned me as they wouldn’t pay for the Liothyronine due to 6000% price hike by the manufacturer, now recently fined £100m for over pricing.
I don’t think there are any DIO2 results on here as it’s all personal and private. Unless there have been posts on it and people asking questions.
Just wondering when she also takes the 15mcg. I’m aware you said split into 3 throughout the day but I believe from my own experinece that when is quite critical too. I was given 10mcg of T3 and told morning and night. Did nothing for me at all as I was taking in waking and before bed. Endo wasn’t clear. So I mentioned it not working and we discussed times with my doc and she said early morning at like 4.30/5am. So wake up take it go back to sleep. Then another mid morning and another early/mid afternoon. It definitely makes a difference to me. No more afternoon slumps. We also did a cortisol test I think it was and it showed how my levels were raised and lowered throughout the day. Very interesting.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Splitting levothyroxine into 2 smaller doses can be helpful too
Only make one change at a time, otherwise can’t work out what’s helping
Have Endo check progesterone, selenium and iodine levels. There are other hormones and trace minerals that affect the conversion of t4 to the t3 for our body to use for energy. Research this until your blue in the face. It’s the only way to understand the endocrine system. Your understanding will help your doctor to understand.
I think she felt good at first because the T3 is really felt at first hence why some find it hard to start taking it. But over time the body adjusts to it so you don’t get that good feeling. For me a T3 level of 4 would be way too low. I need to be over 6. If I were her I’d reduce the t4 by 25 maybe but add in more T3. I went up and up on T3 from 10 to 32.5 a day. Finally my bones don’t hurt.
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