Feeling awful again

[Pearlteapot]

Hi, this tale has been told many times before.

Last week I went to see my Endo and asked to raise by T3 from 10mcg to 15 mcg because I was crashing in the evenings.

I was feeling good and healthy throughout the daytime on a dose of 125mcg Levo and 10 mcg Lio, both taken in the morning. But by 7 or 8pm I was down and out.

He agreed to the increase in Lio but only on condition that I reduced by Levo to 112mcg because he didn't want my TSH to reduce below 0.04 which he defines as supressed rather than low. He said he is only interested in TSH levels and not T3 levels (I hear a collective sigh around the forum).

So, my test on 28.2.23 before seeing the Endo was

TSH 0.07

T3 5.4 (3.1 -6.8)

T4 18 (12-22)

My previous test on 18.1.23 on the same dose of 125 Levo/10 Lio was a month after starting combination treatment and was:

TSH 0.05

T3 6.7 same ranges

T4 18.4 same ranges

So really after an extra five weeks on the same doses of combination therapy my T3 has dropped a little and my TSH has risen an infinitesimal amount, which are probably related.

I can't believe how much worse i now feel since the 12.5 mcg reduction in Levo. I am crashing mid morning. Then taking my third 5mcg dose at 4pm and crashing again by 6.30pm. I was working well and now I'm working badly. I was exercising and now I'm not. I'm thinking that the extra 5mcg of T3 will have reduced my T4 and that together with the reduction in Levo my T4 will have dropped quite a lot so that any benefit I was getting from endogenous conversion is now reduced.

Or could it be that the extra T3 is making me feel worse? I don't think I'm over medicated. Heart rate fine, bowels fine, no jitter. But not sleeping very well.

Not sure what to do. Too early after the dose change to test again. Want to put my Levo back up.

Any ideas?

Perhaps I should add that I haven't tested my vitamins since November. Then D was 129 and B Active was 89, Folate was 29.4. I am very regular with my D supplements, less so with B because I've been testing quite a lot so stop B for a week beforehand. It could have dropped.

TIA

[Lalatoot]

Ah Pearl that's why I would advise to change one thing at a time. Yes it means changes are done slowly and you may have a bad few weeks but by only changing one thing at a time you know what is having the effect.

I think that you need to ride it out for the 6 weeks or so till blood tests. these may help you to decide what to do next.

Things do take time. 18months on from settling on my combo doses, i am still improving. It can be a longterm slow process.

[Pearlteapot in reply to Lalatoot]

I've actually written to the Endo asking him if I can change one thing a time - so we know what is having the effect and on that basis to put the levo back up to where it was and just change the Lio! This is of course sophistry on my part, to some extent.

But when you settled on your combo dose, what led you to settle and not change?

[Lalatoot in reply to Pearlteapot]

The endo decided my initial combo dose would be 50mcg levo and 20 mcg lio (that was a decrease of 50mcg levo and add in 20mcg lio). Endo was surprised when I didn't change to that dose overnight but worked my way to it over months. Endo had given me 1 year's trial so had time to do this and also had good relationship with endo (who was lovely but not knowledgeable).

Bloods after 8 weeks on endo's dose ft4 0% ft3 76%. I felt awful. obviously needed more levo. TSH very low but it had been under range on 100mcg levo alone.

So I started increasing levo and decreasing lio one thing at a time waiting 8 weeks and doing bloods. After 2 years of changes my TSH was undetectable, ft4 50% at its lowest and ft3 72% average. This is on 2 x 50mcg levo and 5mcg and 2.5mcg lio taken morning and bedtime.

I reckoned I could go on changing doses to try to get ft4 slightly higher but that might mean the I would at some stage need to reduce lio to 5mcg. And I had no guarantee that a higher ft4 would improve things. Before I added lio I had been on 2 x 50mcg levo (ft4 was 60% on levo alone; tsh under range) so I had just arrived back at my original dose. Plus I reckoned that a normal thyroid produces around 100mcg t4 and 10mcg t3 and I have no thyroid so I was at a status quo dose. (there was no difference in ft3 when I was on 7.5mcg lio total daily and 10mcg lio daily so I opted for lower dose). This is when I decided to see how things improved longer term. 18 months on and I am still improving and getting more like me again.

[Pearlteapot in reply to Lalatoot]

That's a very interesting account indeed, thank you. I recall seeing you refer to the natural 100/10 ratio before, although I suppose that if one is a bad converter one would not try to emulate that. I'm till on 'trial' so don't have scope to adjust as I wish but once I have a secure prescription things could be different. Astonishing that your Endo wanted you to reduce 50 mcg Levo and add in 20 Lio all at one go. Wow what a massive drop in T4 you would have had suddenly. Slowly must have been bad enough.

[Lalatoot in reply to Pearlteapot]

It seems to be the protocol for the nhs endos here. Must say to do that in their thyroid guide book.Once the GP takes over from the endo they will not change your prescription. They prescribe what the endo has told them you need. It is likely if you asked for a dose change they would consult with the endo. That makes it important to get your doses sorted before the endo passes care back. At least make sure the dose of lio is adequate. I don't know but I think it would be cheaper and easier to buy extra levo if you wanted a higher dose than to source extra lio.

I don't know if I am a bad convertor or if my body just needed that little amount of t3 a working thyroid would have produced. Certainly my results on levo only pointed to poor conversion TSH 0.19 below range, ft4 60% ft3 17%.

Adding 7.5mcg lio to my original 100mcg levo has boosted my ft3 from 17% to 72% and reduced my ft4 from 60% to 50%.

[jrbarnes in reply to Lalatoot]

your comment caught my eye because I don't think I'm a bad convertor but that I need a little extra T3 since I had half removed and the other side is non functional. I've tried every type of combo ratio over these past three years and one thing remains true-I can't function without enough Levo in the mix. A significant amount of Levo combined with 10mcg T3 can be a powerful combo so I'm on about 107mcg T4 and 5mcg T3 at the moment. I don't do well alternating higher and lower doses on alternate days so I split two doses to get roughly 107mcg daily. I've had to rethink the idea that I need a load of T3 to make things better. At this point if I have to increase the T3 I will do it in very small amounts like 2.5mcg. Good to know you're improving on these amounts and gives me the reassurance to stick with this and see if I can improve.

[Lalatoot in reply to jrbarnes]

Yes stick with it. Sometimes we only need a little. I think McPammy is also on a very low t3 dose added to levo and has found that that is all she needs .

[FancyPants54]

I don't know if it's right or wrong, but I would put the Levo back up and keep on with the extra T3 and let that all settle and have a blood test. If you have enough Levo to do that with. Even if we need some T3 to help us, we will still get some conversion from T4 as well. So mess about with the T4 and you run the risk of reducing your conversion. I would not stick with this situation for 6 weeks. You can't be crashing twice a day when you were only crashing once before. Reverse. Perhaps even go back to the previous 10mcg of T3 and the 125 Levo and let that settle down again for 4 or 5 weeks and then try the extra 5 T3. Then you will know if it is the extra T3 that causes you to crash. Right now you are having to guess.

[Pearlteapot]

This sounds right to me, thanks for this. Even if I feel it is right it's hard to go against Endo advice solo, without conferring, even though it is messing up my ability to work. I have only been on the reduced T4 for 6 days, so should be able to get back to where I was quite quickly on the T4 front.

[SlowDragon Administrator]

Are you taking as 3 x 5mcg doses spread through the day

Are brand of levothyroxine and brand of T3 always the same

[radd]

Pearlteapot,

If you can feel ‘good and healthy’ all day and not slump until 7pm or 8pm, I would say that’s great progress and you are on the right track. 

Thyroid hormone replacement meds can take years to reach their full potential, and once the correct dose/ratio is found, they have a cumulative effect but it still took me five years medicating a little bit of added T3 to reclaim good thermogenics. 

Impatience risks us making unnecessary med changes and placing too much focus on numbers. If tests were carried out as per forum protocol I think your February results look good and wouldn’t be changing anything but concentrating on helping what is there to work better. 

The symptoms of too little or too much thyroid hormones (of either or both T4 and T3) are often blurred as if we exceed the sweet spot, we risk meds starting to work against us and inducing hypo symptoms which can take many months to recover from. 

[Pearlteapot in reply to radd]

hello fellow insomniac. I hear you. Thank you. I’m going to go back to my previous dose. X

[Hopetoheal22]

hi Pearlteapot, so sorry you’re feeling awful, it’s such a tricky one to get everything balanced isn’t it. I’ve just started T3 but haven’t lowered my T4 as requested by endo as last time I decreased it by 25mcg (after a trial increase of the same amount) I crashed quite badly. Who knows what caused what though!

Just a thought, if you’re not sleeping well then I’d say it’s very understandable (although not ideal) to be exhausted by the evening. My sleep is hit and miss and on days where I haven’t slept enough I am dead on my feet by 5pm! Any thoughts on why your sleep isn’t great? Mine is due to perimenopause I think. I’m doing my best to optimise it (magnesium, blue light blocking glasses in evening, exercise and daylight as much as poss, don’t eat after 8pm) but only so much I can do, but on days where I’ve slept more everything is better!

Good luck and hope you feel better asap 😊

[Pearlteapot in reply to Hopetoheal22]

I'm pretty sure that my poor sleep is related to my dose change. I was sleeping well before. I am under no particular stress. Whether its due to the extra T3 or the reduction in T4 who knows, that's the problem with changing two things at once. I took my T4 very early this morning and went into a deep sleep, so perhaps that's a clue. or perhaps not since it is supposed to peak rather slowly. Perhaps that is a placebo effect.

Thank you for your comment A reduction of 25mcg seems a lot to me.

[Hopetoheal22 in reply to Pearlteapot]

it’s so hard to know isn’t it. Especially when the effects of any changes are often not immediate and sometimes you feel worse before better! Yes re sleep, if nothing else has changed then sounds like due to dose change. I hope you figure it out and feel better soon, let us know how you get on and good luck 🤞

[Lovecake]

My endo asked me to lower my Levo too, to “try” and raise my TSH a little. It was 0.01 at the time and my levels were lower than yours.

After 2 weeks on the lower dose I put it back up as I had the same as you - felt like I’d hit a brick wall. I told my endo that I couldn’t live like that. My vits were reasonable too. But I increased my methyl folate dose by taking Thorne Basic B and that helped a bit.

This was a year ago and then more recently I had bloods taken (in order to get my T3 prescription) and my TSH had risen to 0.02 - endo was pleased but I was feeling not so good as Ft4 had dropped again.

I persuaded him to agree to me rounding up my Levo from 100 x 5 and 75 x 2, to 100mcg every day. I have to agree that I am aware of the health issues with a very low TSH. But I can’t function if the TSH is higher. So what is worse? No life, barely moving most days at the age of 57? Or get on with things (still not running or being Wonder Woman) that include looking after my young grandsons now each week…….?

It seems that some of us get very low TSH results once we are on T3 (mine was below range on T4 only) and it’s frustrating because we are not over medicated. But the docs/endos have to go by their guidelines or they might get struck off.

[Lovecake in reply to Lovecake]

I also upped my T3 to 15mcg and have ended up on 12.5mcg. I take 5mcg with my Levo, 2.5mcg in the afternoon and 5mcg during the night.

As others have said, give it a few weeks and then reduce if it feels too much. I’m sure you’ll find the correct dose for you, but it might take a while.

[Pearlteapot in reply to Lovecake]

2.5mcg. Are you cutting a 20 mcg pill into 1/8ths? Actually that sounds well worth a try for me. I’m going to get steady on my previous dose first though.

[Lovecake in reply to Pearlteapot]

Yes. I break mine (Thybon). Occasionally the pieces are a tad smaller, but in general they are pretty similar. On the day, if I know I’m going to be busy I might take a piece that is bigger than on a day that I’m relaxing. But it’s working ok for now.

I read some interviews of people who are on T3 (as in scientific people) and several seem to take more T3 on a day they are really busy. The day my son got married I took an extra 2.5mcg T3 and managed to stay at the venue till 9pm (plus hour to drive home). Pretty pathetic really, but was a long day and that’s what I could cope with. (Then had 2 days at home doing nothing).

[Pearlteapot in reply to Lovecake]

thanks

[Kapuna]

Have you looked into splitting the T3 so that you take, say, 7.5 in the morning and 5 at night? I was taking 10 a day and felt better when I split them to 5 in the morning and 5 at night. I wouldn’t change your Thyroxine from where it is.

[Pearlteapot]

Update on this situation. I reverted to my previous dose of 125 Levo and 10 T3 and feel much better again, until early evening as before. It took about a week for the extra 12.5mcg of levo to get me back to where I was. Still a much better state of affairs than when I posted. I will let this settle as advised here. I'm curious about the idea that T3 receptors re-activate over time.

[Pearlteapot]

I thought I’d update this post. The endo agreed for me to stay at 125 mcg Levo and increase T3 to 15mcg because I said I wanted to change only one thing at a time.

For the last few weeks I have felt normal for the first time in a year. I don’t crash. I get normal tired, not thyroid fatigue. This weekend I cycled 64km and felt tired afterwards but didn’t crash. Today I walked 6 miles and felt fine.

I can actually make evening plans and be confident that I won’t need to cancel. I can do my job I’m regaining my confidence

I am soooo relieved. Light after a dark tunnel. Fingers crossed that it lasts. So much help and support on this forum. Thank you all xxx

[TiggerMe Ambassador in reply to Pearlteapot]

Great to hear 🤗 they do seem to like to over reduce our T4 when giving T3.... makes me wonder if it's a tac tic, they know it'll make us feel awful and then they blame it on the T3 and snatch that away again??

[ettiebetty in reply to Pearlteapot]

I'm so happy for you. thank you so much for updating for us xx

[Pearlteapot]

ha! That was 8 months ago. It didn’t last. I just post about it less frequently because I’ve come to accept that no solution is stable. I’m now on 30 mcg lio alongside the same 125 of levo and taking a cocktail of other hormones, dhea, estrogel, progesterone and lots of B vits and feeling fairly normal at present (although not this evening).

[TiggerMe Ambassador in reply to Pearlteapot]

How are you getting along with the dhea? I've been using 15mcg and certainly think it is helping balance things out a bit, I'm about to swop over to micronized 10mcg 🤷‍♀️

[Pearlteapot in reply to TiggerMe]

Replied to you but in the wrong box 📦

[Pearlteapot]

micronised what? Progesterone? I think the 3 hormones are helping me a lot. For one thing I sleep properly now which obviously makes a huge difference. I just generally don’t feel so beaten. When my dhea was very low my skin on arms went all crinkly like. 75 year old but I’m only 61. Seems better now and that improvement must be internal too. I can do two yoga classes in succession, one hot followed by a vinyasa so that’s pretty good. Still get slumps occasionally. Usually if I mistime my dose. I’m only taking 10mcg dhea. My hair is greasier than before- !!! Weep ye kings!

[TiggerMe Ambassador in reply to Pearlteapot]

That all sounds pretty positive 👏 Just the thought of Yoga still makes me cross 😠 perhaps I have roid rage🙃

"Micronized DHEA is 3 to 4 times better absorbed than non-micronized. Micronization means that the individual particles of DHEA have been reduced to very small size. Regular DHEA may elevate testosterone levels leading to sexual aggression, while micronized DHEA sulfate may promote overall well-being. Oral micronized and unmicronized dehydroepiandrosterone resulted in increases in serum dehydroepiandrosterone, dehydroepiandrosterone sulfate, and testosterone."

Perhaps I'll notice the difference if I fancy getting yogic? 🧘‍♀️ Even if it is the warrior pose? 😏

p.s. I use testosterone but I have noticed I can lower my level of added estrogen since the addition of dhea and only add testosterone 2-3 times a week... I thought the underlined bit sounded promising 🤷‍♀️ seem to remember reading that micronized is also a little easier on the liver...?

[Pearlteapot in reply to TiggerMe]

Interesting! I have an appointment next week so shall ask about this. Just looked at my bottle to see if micronised (no) and realised I am taking 50mg. I could do with some sexual aggression so it’s fine! But will ask my functional doctor about it next week (and all the men who stumble unwittingly into my path).