I've just recently started t3 initially 2.5mg twice a day now 5mg twice a day. I've noticed my mood is insane. Feel quite low and serious anger outbursts. T4 is still 125mg. I'll be decreasing to 100mg once I increase t3 to 10mg twice a day as per endos instruction. I don't have a thyroid. Also take high dose body identical progesterone for severe endometriosis. I don't know if this mix of hormones is messing me up but it's very scary and I'm unsure what to do about the dose. Any advice appreciated.
Mood change on T3?: I've just recently started t... - Thyroid UK
Mood change on T3?
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How high was your ft4 and ft3 before adding t3? How long did it take you to build up to 5 mcg x 2 a day? When did you start progesterone and how much? Low moods could be prog for the first few months and t3 could causes outburst of anger if too much or if ft4 was high.
Bloods from April. 2.5mg for just over a week then increased to 5mg. Maybe I need to drop levo to 100mg now. I've been taking g progesterone increasing each month for 5 months. I was trying to get a high enough dose to stop my period after major excision surgery. And to try to combat my extreme estrogen dominance. Had no problems with p until I added in t3.
I feel like you need a levo drop, it's massively over range and not converting to t3. Bound to give you issues. T3 at 10 mcg within a couple of weeks might be top heavy handed, but, I'd reduce that Levo by 12.5 mcg
Thank you, appreciate the advice. I'm not sure if I should go back down to 2.5mg t3 twice a day too. I feel absolutely awful today totally not myself. I'm sure the progesterone dose is affecting things too. What a mess!
Change one thing and Levo is the suspect in this scenario for sure. Progesterone can do stuff too, but if you've been taking it for 5 months by now, don't think it is that
You have to take t3 as they say low and slow. You can't rush t3 as it will give you all sorts of undesirable side effects. Do a blood test before upping the dose each time, every 6 weeks .
I don’t want to get involved with your thyroid treatment: other people on here are far more knowledgeable than me on that subject but I do know about low progesterone effects . Are you sure what you are taking is natural progesterone and not a synthetic version? How do you take it because if you swallow it it is probably synthetic and this can work well at first but suppresses your own progesterone production which can cause symptoms like yours as time goes on, which natural progesterone does not produce.
Yes I'm sure! I take utrogestan and onas cream, both body identical.
Probably not strong enough . Up to 4 x 400 mg cyclogest pessaries daily it gestone injections would give you a better dose but you are unlikely to get anyone to prescribe that for you these days. Sorry I can’t be more helpful.
i only have 3 wks experience of adding 6mcg T3 to levo . ( after 21yrs on just levo) ..... so anything i say at this point needs taking with pinch of salt~ but ~ i think that if i had increased as fast as you are being told to do , it would be giving me some unpleasant problems.
I did 2 wks at 6mcg a day ... all in one dose (just to see if it blew my head off ~trying to avoid the hassle of cutting pills into 8 if possible) .... and concluded that felt a bit much all in one go, felt very up and down, physically and emotionally , some good bits, some unpleasant bits .
Then one week of splitting that same dose into 2 x 3mcg (morning and bedtime) ... which has felt a whole lot better.
the first 2 wks i really struggled at work , overheating at slightest activity , difficulty concentrating heart going faster than usual on exertion ,struggled to find the energy to do the bare minimum .... the 3rd week was a huge improvement .. more energetic , got loads of extra's done , less overheating, heart rate more stable (i work on my own , so getting angry isn't a problem... but it might well have been a problem during week 1 and 2 if there had been anyone around putting pressure on me) .
other than possibly adding another 3mcg in the middle of the day after another week or so depending on how i feel , i have no intention of increasing the dose significantly until my body has had plenty more time to get used to having T3.
at the moment it kind of feels like i need to 'use' it to get my cardio vascular health a bit fitter before adding more ... and i'm open to the idea that 6 or 9mcg a day could possibly be all i need anyway.
. so (captain cautious here, lol ) i'm going to wait 6 wks at least at 6 or maybe 9mcg in total then do bloods so i know where i am before even considering increasing dose
we are all going to respond differently , but i'm pretty sure i would not have enjoyed getting up to 10mcg within 10 days as you have ..... pretty sure it would have given me angry outbursts too .
Thanks for the information. I was actually told by the endo to take 10mg twice a day! So on the advice of this group I started at 2.5mg x 2. I had no ill effect with that dose so I was keen to increase after a week. I had heart palpitations badly one night after a few glasses of wine. And now I've had this awful outburst today. It's week one thousand of the school holidays with 3 kids under 10 so my patience is running low as it is! I wonder if I should go back to 2.5mg per day and reduce levo also. I'm so upset as I was expecting T3 to be a miracle for me with zero energy for 13 years after a thyroidectomy for ThyCa. I feel like I can't take much more I'm so depressed with it all.
i got lost .... in total, are you now on 5mcg / day , or 10mcg/ day ?
and how high was fT4 on just 125mcg levo ?
so hard to decide isn't it....... but the kids would probably prefer 'boring grumpy sloth' to 'unpredictable shouty monster' while you are experimenting for the next few months to get it right ...... 3 kids off school is not the ideal time to change how all your cells work, ... so bearing that in mind , if i were you i'd stick at whatever dose of T3 feels comfortable for a month and then re-asses how you feel .
i spent the last 4 yrs on here just being a nosey parker watching others add T3 before taking the plunge myself .. so i know that "Eurika, my body loves the T3 and i have my energy back " is ......pretty darned rare.
it's way much more common to have to fiddle about for months to get anywhere, and often it gets worse before it gets better, and loads and loads of people go up too fast and regret it and have to start all over again ..... slower.
Don't get depressed about this process probably taking months rather than days..... making anything good takes time and care to get it right .
My daughter was given 20mcg t3 and told to take it in the morning as it might affect sleep. With advice from this group she split it in 4 and took 5mcg at 6am, then added 5 mcg at 4pm before adding the third dose at 11am. Recently she has had some mild symptoms so increased the 11am to 10mcg. This has taken 3years to get to this point. She also takes 125/150mcg t4 at night. So low and slow seems the way to go.
I too was told to take 10mcg twice a day and felt pretty awful on that. I cut back to 5mcg twice a day and instantly felt better. I have just this morning decided to up my dose to 10mcg in the morning and 5mcg in the pm to see if I can get anywhere near the 10mcg twice daily that my doctor wants me on...we shall see. The good thing is (at least in my experience) if it is too much you can cut back and quite quickly feel a bit better again. I too have no thyroid. Good luck!
Thanks for replying. We must be told to start on a higher dose due to no thyroid. Can I ask what dose of levo you're on please? This morning I've taken 100mg levo and 5mg t3. I'll take the other 5mg t3 an hour before dinner. I've just had vitamins and minerals results back and my calcium is abnormally low. Ferritin just in normal. I've started iron, vit d and now I'll need to add calcium. Sick to my stomach with the amount of pills I take daily.
Sadly your thyroid status has no bearing on how much an endo will tell you to start on. They are pretty much clueless. They go around spouting absolute rubbish about thyroid and over loading patients with too much hormone too fast. We use them to get a prescription if we can, then we studiously ignore them and learn how to do it ourselves from forums like this and from books. They are diabetes specialists. We are specialists in our own selves.
endocrinology profession is completely two faced ( and / or just plain stupid) in their attitudes and practices around T3 use .....
"no chance, don't be silly, it's very strong and potentially dangerous so we don't want to prescribe it at all "
"oh alright, if you insist , here ... start on 20mcg all at once and see me in 3 -6months when i might or might not even bother testing your fT3 "
bunch of muppets.
iether it's potentially dangerous and they should tread cautiously and monitor carefully....... or it's not a big deal and we could all be allowed to 'suck it and see' if we are struggling on levo only .
It's hard not to conclude that they don't want to prescribe it and when forced to , they intend to have most people say " it made me feel horrible" so they can stop prescribing it.
It's far more likely that these endos are setting you up to fail by prescribing too high a dose of T3. You can't tell me that they don't know people are going to feel bad starting on too high a dose because I just don't believe it. Thing is, they don't want to prescribe it. They are terrified of it and want to put people of taking it. So, if you go back to them and say, oh I feel worse on T3, they can say well, T3 is obviously not for you, then. And stop prescribing it!
Taking calcium supplements is a very bad idea unless you have to. It its poorly absrobed and tends to build up in the arteries and soft tissues. If you are taking vit D, that will increase your absorption of calcium from food so you probably won't need the supplements. But you do need to take vit K2-MK7 with it to make sure the extra calcium goes into the teeth and bones, and doesn't build up in the arteries.
I just had vitamins and minerals checked. Would you say I shouldn't supplement calcium with this result? I'm getting the tingling in hands and feet, headaches daily and awful fatigue. I've just started high dose vitd&k2 combined. Three arrows Heme iron just arrived today.
That is low, yes. So, what is your doctor doing about it? Has he checked your kidneys and your parathyroids? I really don't think you should start calcium supplements without further investigation.
I paid privately for the bloods so the gp doesn't have them. I've often wondered if I have a parathyroid issue due to the thyroidectomy and a dozen lymph nodes being removed. Im sure i had it checked years ago. I guess I'll need to get this investigated. The high dose progesterone could be affecting the calcium.
I'm not expert but I would have thought it more likely to be a parathyroid problem than due to the progesterone.
Would you mind me asking what lymph nodes you had removed, was it the neck lymph nodes.
Yes, radical neck dissection with lymph nodes removed.
Thanks for getting back to me, I was intrigued because now I have 2 lumps on my left side of neck and ENT are refusing to take them out as it’s dangerous with lots of blood vessels around. And to top that I have just been diagnosed with breast cancer, don’t know whether they will operate or I have tablets for 5 years, it seems a waiting game at the moment.
It's known as setting you up to fail .so they don't have to prescribe it. I was told to take 20mcg at first daily which gave me the most horrendous headache. I was told on here to take 2.5mcg a day for a while then do blood test. gradually I increased and am still on 10mcg daily as any higher makes me feel gastly. That is since 2019, thyroidectomy in 2018.
I am paying to see a private doctor so I don't think that is the case for me. I had been trying Armour which I didn't altogether get on with and she thought as I had been used to the T3 in it I wouldn't experience any side effects but it was like rocket fuel for me and I felt awful. Little bit scared to up the dose now but am tentively giving it a go...
I think dropping back to 2.5mcg would be a good idea and also reducing your Levo, which is way over. I have always felt rubbish if my Levo was over range by as much a one point. Ignore the endo. They are dangerous. Mine rushed me at one point. It's just horrible. They do more damage than they do good.
T3 has never been a miracle for me either. But on balance, if I take it carefully, it's better than without it. Too much overheats me horribly and increases my heart rate. I get short tempered and even more tired. Yesterday I felt rubbish (I'm under dosed at the moment and trying to work up in a different way to last time) and I had to go to work so I took 2.25mcg of T3 extra to my usual dose of Levo and NDT. I was convinced it would wake me up a bit. I actually fell asleep on my desk. Fortunately I work for myself, on my own.
Heavens! After reading how 6mcgs affect you, I think I must have been half dead because I was put straight onto 20mcg with 100mcg of Levo and then that was increased to 40mcgs with a reduction of Levo to 75mcgs. I can’t say I noticed very much at all, plus I was taking it all in one go at that time!🤪😳
to put it into context , i suspect that i would not have noticed any effect from 6mcg if i'd started adding it when i was younger and still fitter than i am now .
When i started levo in my early 30's i had no issues at all increasing from 50mcg to 100mcg to 150mcg , i was pretty fit at that time , but now i'm closer to 60 than 30, had recently started getting heart grumblings and pulsatile tinnitus on levo only , and in the last 6 or so years have become much less physically fit compared to how i used to be.
Well it was only about 5 years ago for me so late 60’s and I’m very imobile!😩
ah ... that blows my theory then lol
Dosing is so personal ( particularly once T3 is introduced) that the only workable theory is the one that works for the individual!
Hope the T3 helps.
Thanks dd,
..... if only endocrinologists knew how to spell 'individual' ..... they might manage their job more effectively .
Gawd....you made me check my spelling! Old age doesn't help my once good spelling!!
Oh goodness! I've always been rubbish at spelling. So I really hope mine doesn't get worse the older I get.
I am convinced that poor spelling is a hypo symptom. Given all the other brain symptoms that go with low thyroid hormones, I don't see why it wouldn't be.
I have always been a poor speller, right from the get-go. But I've always been an avid, vivid reader and have a wide ranging vocabulary. I read scripts out loud well on a first read through because I think my eyes are ahead of my brain on the page. I actually think I read in such a glancing way that I don't really see the words and therefore don't remember how to spell them.
Now, when my dose is too low, my reading speed and enjoyment really goes down. At my worst I could not read at all. I always know if my dose needs adjusting when my book sits on the side table barely moving.
I've always read a lot, too, even as a young child, but I can't visualise words. I've also been hypo since I was about 8 years old so pretty sure there's a connection.
sharing my experience too:
One more vote that your T4 needs to come down, and we are all different on T3 but when I started with 10 a day (5 in the morning and 5 at night) it took me about 9 months for wild palpitations to stop. Now, I was underreplaced overall so I think it was also due to being under on T4.
But if I could go back and do it again I’d never jump in with T3 10 mgs a day at once.
Also
I will reiterate
Change one thing at a time
Not because changing more than one thing is “bad” but because when you have a negative impact you will have no hope of knowing exactly what’s causing it.
Sometimes it’s not possible to change one thing at a time. And I know the conventional wisdom for adding t3 is to drop t4 by 25 mcgs a day. I did that.
That being said - you are in a position where you actually don’t know which change is causing which reactions.
For me - I have chosen to stay a little sub-optimal for a little longer and have made the smallest of changes for the longest periods that I can.
me too .. having experienced becoming overdosed on levo in the past, i decided i'd sooner start out a little underdosed and creep up to the right place , rather than overcook it and have to come back down.
Thanks for replying. I know you're saying change one thing at once, but I feel I need to go back down to 2.5 x 2 t3 and also reduce the levo. I'm so upset with this, I've had 13 years feeling awful after TT and was hoping this would help.
I haven’t followed exactly all the variables here.
Yeah, the add t3 reduce t4 at the same time is a funny one as it happens all the time against the “change one thing at a time” advice.
But I actually think it’s easier for you to decide - because your t4 is just too high and it needs to come down. Can you reduce your Levo by 12.5 a day? I would personally that’s my 2 cents.
And I think you said you’re only in week 1 or 2 (or is it more?) of 10 mcg T3.? Is that true? In my own experience 10 was tough for me. It’s fine for others. I’m not so sure it’s the t3 causing your symptoms (no way to know) and you might just end up on 10 anyways.
So either stick it out.
Try not to whip lash. If you just upped to 10, then I’d be inclined to revert to 5 a day.
But whatever you do - Make your choice now and set the clock for 6-8 weeks before you second guess yourself again.
Disclaimer- I haven’t grasped all the details above nor have I looked at previous posts of yours. Just sharing my experiences!
Thanks, yes I'm on week 2, just upped to 10 total per day from 5. I think I might stay at the 10 t3 and reduce levo as my t4 was too high. So hard to know what to do for the best.
I am new, though lurking and learning for a long time. My opinion is that your high T4 is what is causing your symptoms. Adding the T3 probably caused a slight increase in your T3 level, which since you are a bad converter, caused your T4 to go higher, or convert to more RT3. I have been dealing with Thyroid issues for over 25 years. The worst I have every felt was when my T4 was high and T3 was low, and my T4 has never been as high as yours is, and I struggle to get my T3 up above bottom 1/4 of range.
Back in 2007 I was started on 25 mcg T3 (all in AM) due to bad conversion. I believe looking back it was the only size of T3 available to the system the Dr and I were both stuck in (US Military), and they weren't allowed to recommend splitting. I didn't notice any negative side effects, and my symptoms got much better but not instantly. When my T3 was still low, she upped it to 50. Again no immediate symptoms, but did have more energy. After a while I noticed an inability to stay focused on tasks and an increase in appetite leading to an increase in weight so I went back to the 25. I am currently on 37.5 mcg T4 and 25 T3. Some day I hope to have the energy to fill in my profile and ask for advice but will leave me out of it for now, except to say that I have read about so many people who have issues with adding T3 in very small doses to add my opinion that their may be some mechanism that causes the T4 to increase and that is what is causing the problem.
I also did read here recently that President Kennedy was diagnosed with mild hypothyroidism in 1955 and given 50 mcg T3 till he died (and he did not die of atrial fibrillation). Also many studies of psychiatric patients using T3 only (and some at incredibly high doses (up to 175 mcg in one study) did not show the side effects people on T4 and adding a little T3 show.
If it was me I would set my priority getting the T4 down, even being more drastic about it (but testing it very frequently if you do that). The T3 may even increase as the T4 goes down. I suggest you read as much of Tania Smith (Thyroid Patients Canada), even if you don't comprehend all the details you will learn a lot. She has a great article on why raising T4 is the worst thing you can do to raise a low T3 (and low T3 is what causes hypo symptoms.
Progesterone interacts with thyroid hormones in several ways. It has been shown to influence thyroid-stimulating hormone (TSH) levels and thyroid hormones like thyroxine (T4) and triiodothyronine (T3). Studies have found that progesterone therapy can decrease TSH levels and increase FreeT4 levels.....but doesn't appear to affect FT3.
Your FT4 (April) is far too high....over range FT4 is not advisable and it will only become rT3 which is the product of excess unconverted T4, it is the metabolically inactive form of T3.....and does nothing re thyroid issues
.FT3 at April test= 27.03% through ref range so conversion is/was poor. You need to test again.
Your T3 increase has been on the speedy side but we are all different.
Now ....5mcg T3 twice a day...a jump to 10mcg twice a day is too much......7.5mcg twice a day more appropriate
Do not increase by more than 2.5mcg per dose and for T3, no sooner than every 2 weeks.
You do need to reduce levo....probably quite considerably so long as you are on progesterone
I think your high FT4 is your problem....your hormones are out of balance
I've been taking progesterone increasing each month for 5 months.
How much progesterone are you now taking? Is it possible that side effects may be adding to your problem, or is your dose now too high?
I'd suggest you have another full thyroid test but only after 6 weeks on a steady dose of thyroid hormone.... this gives you a baseline to work from
Only alter your dose after this test....the results will point to the way forward.....otherwise you will end up chasing shadows!!
And only alter one thing at a time
I need high dose T3-only to function....it's not the scary hormone that medics often warn about but only if used correctly, like any other medication.
You need the T3!
For good health every cell in the body must be flooded with T3 by way of an adequate andconstant supply
Your FT3 was well within range in April....if/as you increase dose keep level within range to avoid overmedication.
How you feel/ symptoms are hugely important so keep a record of them
In fact keep a record of your medication/ doses/ effects if you don't already do so. I do this using a diary some prefer a spreadsheet
It's a long slow, boring process achieving your therapeutic dose....patience is key. Not easy with young children.
Take a deep breath, work out your plan/ timetable and above all do not rush the mediation....there is light at the end of the tunnel. Boring as it is ease off on wine meantime.... very little can cause an upset
Good luck!
Thanks for taking the time to respond. I'm on a very high therapeutic dose of body identical progesterone to try to keep my severe endometriosis at bay, after major surgery 5 months ago. I was coping very well on that before adding the T3. I should have reduced the T4 straight away, but I started so low on 2.5 twice a day I thought I would keep t4 where is was to begin with. I'm now on 5mg twice a day, so 10 in total. Do you think I should keep the T3 5mg twice a day and bring the levo down to 100 or 112.5? This is what I'm considering rather than lowering the T3 again. Yes, I know the wine needs to go...3 kids and neverending summer holidays often = too much wine! Thanks for the advice.
Crikey....I really was being "Granny" re the wine....I'm 79 and used to enjoy a glass or three!!
Expecting our grandsons (8 and 10) next week...maybe I'll be raiding the wine racks too!! They race around the house and garden shouting after one another.....no neighbours to disturb!
In your shoes I'd def be reducing Levo....I think you can afford to drop 25mcg...2 stages if you prefer.
I'd stick with the T3
Test after 6 weeks.....
It's not a quick fix unfortunately.....took me nearly a year to reach my therapeutic dose of T3-only......but no small children to cope with
You've had a rotten time of it, hope you get some me-time. Take care,
Morning!
I can only share my experience as we all know there are so many nuances to hormone replacement, and people react differently. My mood improved significantly when I started taking t3, I managed to come off Sertraline which I'd been on for 3 years within 6 months. I also use progesterone cream.
As others have said I'd 100% reduce levothyroxine, it's not converting to t3 and high t4 (for me, even within range) can make you feel awful.
Good luck!
T3 is a bit of a shock to the system as it's an active hormone unlike Levothyroxine, so it's best to build up gradually. It can cause symptoms of anxiety, panic, palpitations, disturbed sleep etc in the first couple of weeks but should settle after this. I've just had an increase and it was a rough 2 weeks but fine now. I hope things settle soon.
I think you have a good plan re sticking to same dose of T3 and reducing T4 but just wanted to add that when I was on progesterone contraceptive injections my angry outbursts went through the roof.
Thanks. I've been pretty stable on the progesterone, it's body identical so doesn't have the side effects of synthetic progestins like the contraceptives. The high t4 and introduction of t3 can't be helping.
That happened to me to on that 3 month depo-provera injection. i'd been on it previously after my first kid , and to be honest i though i was just a sometimes explosively angry mum, with a very short fuse , then i came off it to have 2nd kid and then had another injection a few months after the birth . I had been calm for many months ,but within 24 hrs i had 2 hideous outbursts and smacked both my kids .... didn't have it again .
You have much too high FT4 it takes a few weeks to leave the system. Your do need T3 but require a drop in Levo 12.5 to start with. Then to 100 maybe.
Thanks. I've decided just to go down to 100 levo. I go up and down by 25mg without any problems usually. I'll see how 100 levo and 5mg t3 twice a day goes and get bloods done in 6 weeks.
Hey there, personally I found T3 improved my mood almost instantly I started taking it initially at 10mcg day split into two doses of 5mcg 8 hours apart.
I have also found progesterone a bit of a challenge and read that it can affect mood.
Your free T4 result looks very high. Has it always been that way?
That's good you had instant improvement. No, I believe the T4 is a false high as I didn't know not to take my levo before test at that point. It's usually 23 24 so still too high in relation to t3. The progesterone I take is body identical so doesn't have the side effects of synthetic progestins which I've taken in the past. I was fine on the P before adding in t3. My levo dose was too high, I was scared to reduce it but I hope I'm on the right track now it's down to 100.
Just a thought. If you're on Teva T3, that could be the problem. My wife can't tolerate that brand - it makes her extremely anxious and emotional.
I'm also on T3 and levo and I know exactly what you're talking about. I had a period of time on T3 where I couldn't control my anger and I was lashing out frequently in a very uncharacteristic way. My free T3 level was over the normal range and my T4 was top of the normal range. I noticed I felt more like myself when my T3 was at the top of the normal range (so like 6–6.8 when normal range goes up to 6.8) and T4 about 19 or 20 rather than 21 or 22 (in a range that goes up to 22). But if I go lower than this I start to get hypo symptoms. I'm on 25 mcg T3 (which I split into two doses) and 162.5 mcg levo.
Thanks so much for this, at least I don't feel like such a monster with the anger! My hormones are just a complete mess across the board with huge estrogen dominance due to endometriosis which I'm trying to address with a high dose of body identical progesterone. And now the thyroid med changes. It's been a storm brewing! Can't wait to get the kids back to school and get my health back on track.
I'm sure others are better qualified than me to provide an input of such a drug regimen change from experience.
However, in the context of your, albeit transitional, very high T4 which seems not to be converting into T3, two things spring to mind that do not seem to have been mentioned here.
One is that if it's not going into T3, it could well be going into Reverse T3. As measuring FT3 (the active hormone) seems to be an exotic notion to many medics, good luck getting Reverse T3 measured by them. Although it could account for many symptoms.
And the second is that it may well be that you have a common polymorphism affecting your conversion of T4 to T3 within your cells anyway, like a hetero or (more severe) homozygous DIO2 gene profile.
Testing will also be the only answer to rule this out.
To see if there may be any merit in either fitting with your symptoms you might try e.g. a Perplexity.ai question like the attached.
I certainly hope that things settle down for you on the new regimen. However, it is a journey, and encountering unusual features in any transition can be telling because it may reveal something of lasting importance. So, you are right to ring the changes.
Thanks, I appreciate this information. I have just about every symptom on that list apart from swelling. How depressing! I wonder if there's anywhere I could get the test privately, I'll look into it. What can I do about exceeed reverse T3?
You can't. rT3 is controversial on here. Some of us say it's a pointless test because all sorts of things cause rT3, it's fleeting and we can't control it other than by fiddling with the meds, as you are already doing now. US patients seem to get the test easily and so they do.
As for the polymorphism, yes I have the Dio2 genetic issue inherited from one parent so my conversion is spasmodic. But we use that test to help us get a prescription for T3, which is the only solution to it. You already have the prescription and the poor conversion so you don't need the test. We have to save our money for the tests we can actually influence. Having too high a FT4 will increase your rT3. So bringing it down will reduce it. I have never tested for rT3. It's not available on the NHS and is too expensive privately and even if I have it, there's little I can do about it other than what I am already working on.
How depressing! I wonder if there's anywhere I could get the test privately, I'll look into it. What can I do about exceeed reverse T3?
No!....rT3 is only going to take you up a blind alley!
Once you get your FT4 level lowered by reducing levo then rT3 shouldn't be a consideration.
rT3 is the product of excess unconverted T4, it is the metabolically inactive form of T3.
An rT3 test tells you nothing other than it's high or low but there are many reasons for that ...but only one is related to thyroid function
You don't need an expensive and lengthy rT3 test to judge T4 to T3 conversion status you can do that by comparing FT4 with FT3 before T3 is introduced....high FT4 with low FT3 indicates poor T4 to T3 conversion
As for symptoms.....those develop when FT4 and FT3 levels are wrong for you, the result of wrong diagnosis and/or wrong medication. You have to look in the right place!!
I suffered for decades because of both wrong diagnosis and wrong medication.......rediculous but true!
Some of us have a thyroid genetic test which can, in some circumstances, be useful. If the Dio2 is inherited from both parents( homozygous, like me) then the impact on conversion can be greater.. It can help persuade some endos to prescribe T3....but not all!!
But you have T3 prescribed so not really applicable!!
Your low cellular FT3 is most likely responsible for (most of) your symptoms....certainly not rT3!
Correct your FT4 and FT3 and forget about rT3, it's a red herring!!
thyroidpatients.ca/2019/11/...
The following comment from the late Dr Midgley (our hugely valued and much missed TUK advisor) explains...
I recommend Tania Smith's latest blog on the meaning or otherwise of rT3 in thyroid hormone activity. She discusses its meaning in several scenarios and uses our, Bianco's, Ito's and Gullo's work in supporting her argument. This should put the rT3 situation in its real position in the scheme of things.
It's easy to get carried away with excessive testing because very often the answer is right under your nose in just a few straightforward, basic tests.....we just need to learn where to look!
You now have a good working plan as you have already pointed out to me/us......stick to it, avoid heading up a blind alley, and be very patient. I understand how challenging it can be, my journey is related in my bio if you're interested!
Also....bear in mind that progesterone can cause FT4 to increase so that if/when you stop it you may need to adjust your Levo dose
Sorry about the long rant!
Best of luck....you can do this and we're all here to support and help you.
There are no symptoms of rT3. It is inert, so how can it cause symptoms? Those are the symptoms of low T3.
Of course the OP will have high rT3 with that level of FT4, that goes without saying. She doesn't need a test to prove it. But the high rT3 is the result of conversion problems, not the cause of it. It's like the over-flow pipe in the bath, making sure the water level doesn't get to high, converting to rT3 gets rid of some of the excess T4 and recycles the iodine. rT3 only stays in the system for a couple of hours before it is converted to T2, then T1, etc.
The problem lies not only in the fact that the FT3 is too low, but that what little T3 there is will have been down-graded by the deiodinase used to convert it, to a form of T3 that is less active than normal. So, yes, the levo does need reducing to bring it back to a reasonable level, and that might even improve conversion a little. But testing for rT3 and DIO2 is totally unnecessary.
there are loads of potential causes of high reverseT3, (the deiodinase's are what convert our T4 to T3 , but to regulate the system they can also convert it to reverse T3 which is inactive . high reverseT3 happens when T4 is converted more into reversT3 than T3, it's a dsort of mechanism to slow the body down .... happens while ill , or with calorie restriction etc loads of causes.. also happens of T4 level is too high for the body )
testing it is expensive ( about £100 or more) and test usually has to be sent to america to be done, so results take a while to come back .
and if the rT3 result is high , and if the cause was too much T4 , the solution would be to reduce T4 dose ( and then potentially add some T3 if still not doing well on lower levo dose) .... which you are already doing. so not much point in you forking out £100 in my opinion .
greygoose is better at explaining why rT3 is not usually worth bothering with than me. but basically you can usually tell all you need to know from comparing fT4 levels to fT3 levels .
report all to doctor. we hope you even out soon
wow! This is an amazingly long thread so I’ve only read about the first 3rd, apologies if what I’m about to say has been said.
I have done the journey you’re on. I initially given T3 to run alongside my levo. I had issues starting T3, mainly really bad ice pick headaches and had to drop to 1/4 tablets, so about 1.75mcg per dose to begin with. I had palpitations about half an hour after taking my T3 for a good number of months afterwards. In fact, I had forgotten about this until I read it, so it did go but I couldn’t tell you when.
My reason for posting is that I found I couldn’t cope with levo and T3. I don’t think I’ve found anyone else on here who had the same issue but I’m happy to find someone! It was as if the levo blocked the T3 from getting in, so although I felt better, I got to a point where all my joints ached so badly, and my limbs felt like concrete. But if I recall correctly, I think I got to around 30mcg T3 and I kept reducing my levo, until gradually I got to T3 only. And I felt sooooo much better.
It probably took a few more months, but all the pains I had slowly disappeared, and I felt like the old me again.
The one thing we take from the forum is that everyone is different, and this is by no means medical advice, but it’s just a note to bear in mind that a mixture may not be for you. One may prevent the other from working effectively. Again, apologies if this has been discussed!
And as for the progesterone, well im having my own struggles with that atm, see my other posts! Good luck 😉