After seeing a new endo I have been taking T3 for just over a month now. I introduced it slowly as advised and so am now taking 5mcg three times a day, plus 50 mcg levo in the morning. I coped well until I added the third 5mcg T3 (just over a week ago) and have had more hypo symptoms and 'crash' days which is getting me down. I am seeing the endo again in 3 weeks and getting blood tests done before then but I'd love to have the advice of this forum on what to do in the meantime!
I know they say be patient, and it doesn't suit everyone, but I'm wondering how long to wait and hope my body adjusts to the current dose, which seems about right given that before this I was on 75 mcg levo which seemed the norm for my body weight.
Any advice welcomed - thanks!
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Zadock
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Thanks tattybogle. Yes, you may be right. I can give that a try. I just wonder how long you need to try each change of dose before knowing if it's right for you? I assume with T3 it's fairly quick to take effect.
There is a big difference between how long T3 (or T4) takes to 'take effect'. (hours T3 /days T4).... and how long it takes the body to get used to and stabilise on that new level of hormone (and then adjust TSH in response to that new level.. and then adjust thyroid's own production of T4/3 in response to that TSH level .... and then TSH to respond again to that slightly different level of T4/3 )
only once this chain reaction has stabilised on the new dose ...( at least 6 weeks ) can the body THEN start to make improvements to some of the symptoms.
This is not to say you won't notice any effects in the first hours /days/ weeks.. you will , of course ..... but you should not consider how you feel in those first few weeks as a true representation of how your body will respond to that dose once it has been receiving it consistently over a couple of months ... some improvements in some symptoms occur gradually over months.
When iv'e changed levo dose by as little as 12.5mcg , the first 4/5 weeks have often felt worse , or at least 'a bit all over the place' , with how i felt changing every week .... and if i'd been asked at week 5 "is this dose better or worse ?" i'd have said i think it's not the right dose for me ...... but by week 6 i realised i was beginning to feel a little better for a few days at a time. and when i've left the dose the same for 3/4 months ... i realise overall i feel better than i did on the previous dose .
I now adjust my dose like this: make a small change , make a note of how i feel at the end of each week for the first 4/5 weeks , but don't worry about it.
after week 5/6 and a blood test .. pay more attention to if things are improving or getting worse .... it it's improving slowly or if i'm not sure .. i leave the dose as it is for another month to wait and see. if it's getting worse after 5/6 weeks .. i'll have a rethink about the new dose .
I realise T3 is a different experience to levo ..but i'm pretty sure the same basic principle applies ie. it's no use judging anything in the first few weeks, before the body has had time to become accustomed to the new levels once everything has had time to settle ... it's like trying to see how much water is in a measuring jug just after you put it down on the table .. the water level is still going up/ down, side to side .... you need to wait for it to settle then read it .
You explain that so well - thank you! I guess I need to be more patient though it's hard to persevere after increasing the T3 dose and feeling rubbish so much of the time. But your advice does make sense and I'll take any change very slowly as you say. Thank you.
I'm only in my early 3rd month of adding T3. My dr has changed the dosage twice-- raising the T3 and reducing the T4. Then wait 7-8 wks for a blood test. I want to be optimal levels once in my life!
That's interesting - you are a month or two ahead of me then. It's clear from this forum that we are all different in so far as what works best for each of us, so I suppose we shouldn't be surprised when an endo doesn't find the best prescription right away.
If you are gaining symptoms with the addition of the third T3 dose raise instead of losing symptoms, then you should stop taking it until bloods are done to assess levels.
It maybe you don’t need the third dose. Many members only medicate 10mcg T3, myself included. Maybe you need more but it is still too early for your body to accept. Maybe you have adrenal issues or inadequate iron levels and your body will never accept until these are addressed before or alongside any T3 increase. Maybe it’s the Levo that needs increasing as
50mcg is quite a low dose.
Thyroid meds can be fussy and it is important to optimise the necessary cofactors such as iron, Vit B12, folate and Vit D. If you post all labs when you next have them including ranges (numbers in brackets), members will comment.
Thanks radd. My iron levels are ok and adrenals ok other than slightly raised at bedtime. At least that what the saliva test showed. Vitamins are all good also.
My blood tests (thyroid) are booked for Tuesday so if I drop the third dose now I won't know my results on 3 doses, but I'm tempted to drop it anyway just to feel better! And I will post the results as the advice here is so helpful.
Taking T3 shouldn't be an endurance exercise. It should make you feel better and by taking it when it makes you feel unwell could make things worse. However, you have seen great improvements 10mcg T3 and what you don't want is for endo to reduce your dose just because of third-dose symptoms so be careful what you say at the appointment.
If it were me I would be sneaky, stop third dose of T3 but not tell endo. Then if endo's bloods show adequate T3 levels on 10mcg you will know yourself that the bad side effects were through over-medication on 15mcg. If bloods show you are still under medicated on T3 and required that third dose you can introduce yourself later more slowly over the next few weeks/months. Endo is unlikely to comment on lowish T3 levels as they prefer them that way anyway.
Also if you don't need that third dose but kept it on prescription, it will allow you to stockpile in case they suddenly decide to withdraw the whole lot which happens quite frequently.
Thank you radd. I'll bear that in mind. Though it's terrible that we are forced to even consider deceiving the professionals! I'm still feeling optimistic about putting my trust in this latest endo so we'll see how the next appointment goes....
Maybe you reduced your Levo too much? Maybe you’d be better taking all your 15 lio in one go with your Levo in the morning? I find taking bits of lio across the day makes my body call out for more lio a few hours after each dose (head and ear ache). Some people do take lio all in one go - something about flooding the receptors. greygoose ?
I take 100/25 first thing and wait an hour and tolerate it much better than when I was religiously trying to have six hour gaps between lio doses (hard to find times to eat and drink and take vitamins when always need at least an hour either side of meds).
This is a very interesting comment you made. It rings a big bell for me in my mind. I too find that splitting my T3 dose makes me feel like T3 run out and I feel I need more T3 to dose with. Dosing with all my T3 in one go works best for me too. In addition I find from my experiences that if I don't have enough of the T4 my T3 doesn't work well for me.I'm glad you posted your experiences with the T3 .
You’re welcome. Actually I saw your post on NAC the other day and went back to taking them (I’d forgotten why I was taking them so gave up!). Hopefully they’ll help the long list of stuff in the article, all of which I have.
Lots of members take their meds all in one go and it appears to works very well for them, but you need strong adrenal glands or risk palpations, etc. . Shaws is a big advocate of this that follows Dr Lowes theory on flooding the receptors.
However, because you have only been medicating a month, haven’t optimised your dose and are having difficulties with that third dose, if you change timings now you will muddy the waters.
Also if you can’t tolerate 15mcg in small increments spread over say 12 hours, taking it all in one go risks a much larger unwanted reaction. T3 must always be introduced low & slow and timing adjustments made later after the body has complete tolerance 😊
I crashed when taking my third 5mcg T3 dose. I was over medicated on T3. I take 64mcg Levothyroxine a day too. Maybe speak on the phone to your endocrinologist and request a blood test while you’re having these crashes. You’ll be able to capture what’s going on. I did this and my T3 level was abnormally high. I reverted to 5mcg twice a day 8hrs apart and I’ve been great ever since along with my 64mcg Levothyroxine. I’m on liquid Levothyroxine so it’s easy to reduce tiny amounts. My TSH is now 0.90(0.35-5.50) and my T4 and T3 are midway in the ranges. I tend to do much better keeping my TSH around 1.00. Which means my T4 and T3 also are in range. A couple of times I went over range and that led to crashing.
Also check the timing of your crashes. T3 peaks 2-4hrs in. If it’s around that timing it could be too much T3. I doubt T4 Levothyroxine would make any difference as it just sits waiting to be converted, only would if your taking more which I doubt.
Over medication often feels like under medication.
Thanks McPammy that's interesting. My full thryoid tests are next week and my GP only does TSH which was done yesterday. She did say that if the endo had requested them all (TSH, T3, T4) on 'the system' they could do them. He did request them by letter, but apparently that's not enough ?! Unfortunately I've never mastered doing them myself so always have to pay extra for a hospital appointment.
Re the 'crashes' it's hard to see any pattern frankly. Sometimes a few hours, sometimes a full day and sometimes persisting over longer periods.
Still - we all have to keep trying to find what suits us best, don't we.
I take T3 once daily with one glass of water and wait an hour before I eat.
I am well and symptom-free.
I follow the method by Dr John Lowe who was also an Adviser to Thyroiuduk when I joined the forum. Unfortunately for us, he fell which caused damage to brain and he died shortly afterwards but did his research up until his last day.
He stated that one daily dose could last for up to three days. I trialled this - took one dose - none on day two and day three and the dose did last.
Dr Lowe would never prescribe levothyroxine - he prescribed NDTs (natural dessicated thyroid hormones) given since 1892 and was the very first replacement that saved lives from then on.
He prescribed T3 (liothyronine) to patients who were 'resistant' to thyroid hormones (T4) and couldn't convert to T3.
T3 saturates all of the T3 receptor cells and sends out 'waves' throughout the 24 hours of the day.
Thank you shaws. Yes I had heard about Dr Lowe - that is so sad.... I haven't tried his approach, or NDT so definitely one to consider. I managed pretty well on levo for most of the past five years, but am a poor converter so my efforts now are with the aim of not only feeling good but also hoping to protecting myself against some of the potential long-term risks. It's so complicated though isn't it?! And the more I learn the more I realise I don't know.
You have to be your own advocate, it is great you can tell the difference in a 5mcg & when. Then be able to assist your dr with your dosage. I am post thyroidectomy (no thyroid). A T4 only (Levo & any other synthetic) will not convert into T3 so necessary for good levels. Having been on Armour NDT, I am now compounding NP T3-25mcg T4-47mcg (2nd adjustment by increasing T3 & reducing T4. hoping for better results next test. Thinking I'm that person who still needs more T3. Much good luck, it's a roller coaster.
Thank you and I'm sorry you are struggling. There are so many variables aren't there? But thank you for your advice. Whereas I haven't entirely followed my endo's advice and have increased T3 more slowly, at this point I'm still optimistic that I can trust his interpretation of what next week's results show. Good luck to you.
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