My endo has changed my regime and has lowered my T4 and is increasing my T3 and it is really worrying me.
Even though I don't get along with levo because I wasn't converting it very well I felt more confident because it did give me a bit of consistent energy. It ran out in the evenings though and I would feel shocking. Didn't feel great in the day either.
Will it ever be possible for me to exercise actively, play sport, feel very energised with consistent energy or will the T3 just keep dipping throughout the day? Peaks and troughs, peaks and troughs?
Please would someone who leads a very active existence and is mostly taking T3 share their experiences.
Afraid its peaks and troughs all the time, at least it was for me until i changed to dessicated thyroid..... The hormones in that are said to be bound, not free so there are no peaks..... I feel tons better on it.... Here is an article about the difference.....
This article always makes me ponder the huge importance of regular, healthy meals and stomach acid, when we consider the T3/T4 in NDT are in fact tightly bound with a thyroglobulin protein, which requires enzymes in order to be released.
I know I felt better with an improved diet and then better again after switching to NDT, and like you do not feel the bumps experienced when medicating synthetics.
Hello - I haven't been taking T3 ( alone, bar two less successful periods combined with T4) for so long -about 6+ months now. A couple months ago I decided to try single dosing in the am - as much to improve the peaks and troughs as anything else. 62.5-70mcg. The change ( from 3x a day) was seamless and the effect obvious immediately. No racing heart ( well, very, very rarely) and enough stamina for the entire day. I wake at 6.30, I go to bed at 10pm on average. When I can ( mostly), I take a nap in the afternoon. I work as a teacher and exercise most days for an hour. Sometimes a little less. I am not how I used to be, I can't exercise too much and long trips and unusually heavy days etc tend to shatter me. But heaps better than a year ago. There will be others along I am sure with more experience of T3.
On the other hand, an afternoon nap refreshes and renews. Waking early, walking then working for 5-7 hours in the classroom( and it's a fairly full-on job) can make me feel tired. If I want to continue using my brain til it's time to cook dinner I find I do better with a nap. A nap is very civilised.
Hi joesmum. I'm on T3 (25mcgs), and small amount of T4 (80 mcgs liquid thyroxine). It's been 3 years since I was diagnosed with hypothyroidism but the last year has been a much better one in relation to my competitive sport (running). I regularly adjust my T3 depending on how hard or how long my run/race is. I've become intuitive with my body and symptoms of being hypo. I do have setbacks and my recovery might take longer but personally the joys of running and competing is my best medicine. I also had open heart surgery two years ago (aortic valve replacement). I am now able to enter marathons and numerous other events and regularly win my age category. I have always been competitive since childhood so maintaining a high level of fitness is 'normal' for me. I understand your need to exercise and I can't contemplate enjoying daily life without doing some form of sport. T3, with an excellent diet (vegetarian, gluten free), works for me. I wish you well 😊
I've added some blood results further down the page to demonstrate why my endo has decided to move forward with mostly T3.
You sound as though you're doing amazingly well AND you've had open heart surgery!! Goodness you're amazing. Having to deal with all this and still managing to keep your spirits up. I do admire you.
Out of interest how did you manage a general anaesthetic with your T3 meds? Did they administer it whilst you were under?
There are lots of people who have used t3 only to lead normal lives. T4 can not run out in the evenings, it has a long half life. That must be caused by something else that is going on with you, or interacting and stopping conversion. You need to find the right dose for you and the right dosing regime. Some people find taking it all in one dose best, others spread it out. I am not leading an active life as I have m.e/CFS, however I take my doses as follows: 30 mcg when I wake in the night between 5-8 depending. 30 at 11am and 20 at 4 pm. I don't get noticeable peaks and troughs related to my doses. I tried taking it all in one dose and personally it made me very ill.
mum, don't think of hormone as medications. Medications are usually foreign to the body and often go against the natural functions but hormones work along with natural substances and therefore should have no side effects unless you have a problem with the fillers.
I take 80mcg T3 only in the morning and this definitely helped with the peaks and troughs. Even taking 40mcg in the morning and 40mcg after lunch meant that I was unable to do much at all in the afternoons/evenings. I am not sporty though so can't advise on anything other than the ups and downs I experienced on T4 and multiple T3 dosing.
I take 80 mcgs of t3 at bedtime and do pretty well on that. I think that I need a little more now it is colder but haven't done it yet. I still don't seem to feel the cold the same as my friends so will stick with 80 in the mean time.
Hi there I have been on T3 only therapy for over 10 years and until I had a stroke 2 years ago I lead a very active life, was spinning at least 5 times a week spent weekends walking with my husband. So I think it is possible, I took my T3 all in one dose first thing in the morning and never really suffered with any peaks or troughs....
If you take your T3 properly (I take mine once daily) and I am now well, symptom-free and energetic. I do not feel ill. T3 doesn't quite work like levothyroxine. It Is absorbed quickly into our blood stream and goes into our Receptor Cells (levo is inactive and T3 active). Thereafter its effect lasts between one to three days. I shall give you a link and the doctor took 150mcg T3 daily (he's now deceased through accident) he was thyroid hormone resistant.
Thank you Shaw's. Today is my first day of 25 mcgs of T3. Doing fine. In the past I've ne ear been higher than 15 mcgs.
I'm just going to go along with it all...
Thank you all so much for your replies. They are very positive and really give me hope.
When I was on 100 levo my FT3 was still below range. I am tertiary hypothyroid and so the TSH is always low.
FT4. 13.9 (8.27-23.1)
FT3. 3.87 L (4.17- 9.46)
TSH. 0.35 L (0.46- 4.68)
You can see why my endo said it was pointless carrying on with levo alone.
My current regime is 50mcgs levo and 25 mcgs of T3. I'm still very, very tired but I am much less hungry, far less bloated, still struggling with depression but hopeful after reading all your experiences that this is the best way forward.
I have a great endo. He has never dealt with anyone like me before but is determined to get me well. I feel very lucky.
I'm due to raise by another 5mcgs of T3 mid December.
Your t4 isn't in the best place either, it could be you just need more hormones all round. Or that NDT would suit you better. If using t4 you want the level in the top quarter of the range and similar for t3. The problem with combining Levo with a larger dose of t3, the body naturally has a 9/1 ratio t4 to t3 is that you are liable to turn much of the t4 into reverse t3 if the body senses enough t3. It might be worth shifting the time of your t4 dose. I take a tiny bit of NDT and I take that last thing at night away from my t3. Is your endo NHS? He's being very open minded.
Yes my endo is NHS. He treats mostly hypopituitary and hypothalamus problems and usually uses T3 to treat because hypopituitary or secondary/tertiary hypos have virtually no TSH and therefore a very impaired conversion rate. Also we have no primary thyroid function whatsoever and do not realease any T3. The use of T3 with pituitary specialists is quite common place.
Finding adequate dosing is difficult because bloods are virtually useless.
Sadly most endos deal with diabetes and the odd tricky thyroid patient so they have very little experience using T3 or a point blank refusal to prescribe it.
I realise I'm fortunate. But I wouldn't wish hypothalamus issues on anyone!!
I have an endo who knows v little but I twisted his arm and he prescribes me t3. How did you get diagnosed when tsh is God and Drs don't think beyond it 99 times out of 100? What's the procedure?
It took a very long time to get a diagnosis until my blood levels dropped dramatically. Just to confuse the issue I do also have Hashimoto's. Which must be linked somehow.
When I was finally diagnosed with central ( tertiary) all my blood levels were below range. At which point I was so poorly that my GP sent me straight to an endo.
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It is hard to differentiate symptoms, i have a diagnodis of M.E, treating with T3 did not remove my symptoms although it helped reduce some of them, i couldnkt tell you which now it is so long ago and i have treated my ‘M.E’ with additional things since so I can’t tell you which were impacted by which. Some people are diagnosed M.E and take T3 of Natural thyroid hormone and recover completely. I have also had to look at chronic Lyme and more recently mould exposure. It is all very complex and each person is different. I am still ill enough to spend 50% of my day in bed it is more that my suffering has reduced. I think all one can do is try things and if they help they help. I self medicated with T3 first. You won’t get it off an endo these days, i am on the verge of having mine taken away. I will just self medicate because i do better on it. It hasn’t cured me of ‘M.E’. Good luck.
Could you possibly explain this a little more please?
I take 125 t4 and 46.5 t3 and I still fail to feel well despite having good t3 levels (though slightly low t4). I wonder if I am converting too much to rt3 and sometimes I wonder if I am thyroid hormone resistant. I'm struggling to find an answer!
I'm not sure which part needs further explanation. Perhaps u cd private message me so we don't dominate this thread, with your specific questions and I can explain if I can?
Yes! Might be you need to divide your doses so it works optimally for you. I have found that when engaging in tennis (strenuously for two hours), I need double my normal dose of T3. I do not have any peaks and valleys anymore. However, you must continue to tweak the amount you need (T3). It is much akin to insulin to a diabetic. Stressful times whether mental or physical call for more hormone.
Keep notes about activities and diet, along with amounts of respective hormones ingested and times taken. It will make the tweaking job much simpler for you when more active or under stress of any kind.
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Sometimes the NHS is fab
Other T3 is available in the UK by special request. I am now on Sandoz. €20 for 30 tablets (25mcg) from Boots. Feeling miles better! 
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