Added T3 and feeling worse than on Levo only

[PixieElv]

Hello There

I am so confused and at the end of my tether.

I was doing really well on 150mcg of Levo, apart from having a really dead spot in the afternoon when I needed a nap (not ideal when you have to work).

My Endo suggested I had 10mcg of Lio at 12noon to see if that helps, whilst lowering Levo to 125mcg. i started Lio slowly on 5mcg and had no problem. I’ve since upped it to 10mcg.

However, most of my hypo problems have come back. I am now tired all day, my mood is really low,i have gained 1/2 stone (in 3.5 weeks), i look like I am 5 months pregnant, my skin is awful (eczema is back), hair is falling out, I am achy like an old person, sleep is poor etc.

I’ve got blood results from when i was on 150mcg and they are pretty good. If it hadn’t been for the afternoon ‘dead zone’, it would have been great.

I don’t have bloods from the T3 addition as it’s only been 3.5 weeks.

What shall i do? Stop T3? Increase T3? increase Levo? Levo only? Could it be menopause? People suggested Adrenal glands are suffering, but why would they start to do that only AFTER I add T3?

I am so desperate and confused. Help please.

[Lalatoot]

Unfortunately it is all about individual body preference when you are on combo. It takes a long time work out by trial and error what levels of ft4 and ft3 are optimal and what doses of levo and lio are needed to achieve those doses. There is no way round this. I would cut back to 5mcg lio and consider your options once bloods are done.

[PixieElv in reply to Lalatoot]

thank you Lalatoot,It’s just so depressing when you started to feel better (after years!) and try to tweak your dose to get rid off the afternoon slump and end up on square one…

[Hidden]

If you felt otherwise well on levo, perhaps splitting your dose would've helped?

[PixieElv in reply to Hidden]

Hi plant lady, Good idea. I tried first thing and last thing and that made my sleep worse, but i could try lunch time with Levo.

[Wired123]

First 2-3 weeks on Lio can be quite hairy. If you’re really struggling I would try taking it back down to 5mcg a day and see how you get on.

Do you feel more hungry on Lio, that’s apparently common and can drive up weight.

Also worth checking your heart rate if you have a fitness band/smart watch. How much higher is your HR vs before starting Lio?

I suspect your drop in T4 is the culprit as Endos idiotically reduce T4 too much when adding in T3. I felt unwell reducing my T4 so Endo eventually compromised and I now take 50mcg less per week - 150mcg 6 days a week, 100mcg 1 day a week.

[PixieElv in reply to Wired123]

Hi Wired123I have been stomach rumbling hungry and eating like a horse on Lio, no joke. I mean who eats 3 burgers????

My heart rate is lower on Lio, I’d say almost too low.

If i have to choose I’ll take the afternoon sleep and a good morning on Levo rather than the always exhausted, depressed, scaly and overweight on Lio

[Wired123 in reply to PixieElv]

Not everyone needs Lio, my Endo says you should know within a few days if it’s working or not. If it’s making you feel worse then it’s not right for you.

However I would add different brands suit different people better. The brand I take works for me, I switched brands and did not feel well.

You may want to try another brand as well as consider NDT. You may need a special practitioner who can prescribe NDT, other forum members will be happy to suggest someone.

[PixieElv in reply to Wired123]

Hi Wired123Thank you

I am learning so much!

First i thought T3 was the end all and be all. Then I leant it is tricky to use and now that it doesn’t suit some people.

I am beginning to think that I am one of those people…

Levo is better for me (I think…but who knows…)

[Wired123 in reply to PixieElv]

Try different brands before you discount Lio completely. One brand totally does not work for me, so it’s not just a Lio issue

[london81]

how old are you and what day of your cycle was this test done? unsure how they can label fsh and lh normal without knowing day of cycle. was it a day 3 test?

as for the t3 it doesn’t suit everyone but as wired mentions often endos reduce t4 too drastically when adding t3 which can cause symptoms to returning. i reduced my ndt by 1 grain (38t4 and 8 t3 ) and my free t4 crashed = weight gain , puffy face, tired etc

[PixieElv in reply to london81]

That’s good to know London81, thank you.

My Endo thinks that Oestrogen is too low and could be beginning of menopause (there’s a whole different story there as my pituitary gland condition means this is menopause the second time round…)

but who knows???

[Josephineinamachine]

Oh no 😖 When are you taking your T3? Do you take shed loads of vitamins as is advised on here? I now rattle with them but won’t stop them because I think they really help. There is the slighted possibility your Free T3 might have gone a bit high in only 3 weeks…I don’t know if mine was high from blood tests but I knew I had too much in my system when I raised too quickly and it felt very similar to your issues - I bloated and got my pains back and became exhausted. Cut back to a small dose and started again…increasing slowly so my body and head adjusts. Seems better and not had horrid symptoms back?

[PixieElv in reply to Josephineinamachine]

Hi JosephineinamachineI am taking the T3 at noon and Levo at 5am.

i am like you, I rattle with vitamins 😂,

I split them out so they don’t interfere with the Levo or Lio or with each other. One of the Admins very helpfully posted a post about what to take with what and what interferes with what.

And you are right it really helps, especially the B12.

[JAmanda]

I also suspect the reduction in Levo is what’s affecting you. Docs always seem to lower Levo but I don’t know why as your t4 was fine as it was and the T3 wouldn’t raise it further. I’d give yourself a good chance by going back on your old Levo dose, as well as the additional T3 spread over 3 doses across the day - or indeed just an hour before your expected slump.

[PixieElv]

Thank you JAmandaThat’s what I’ve been starting to think. my T4 and T3 were within range and with Lio lowering the T4, there’s no need to lower T4, right?

A little more T4 a little less T3, seems worth a try

[SlowDragon Administrator]

Recommend splitting the T3

5mcg waking and 5mcg mid-late afternoon

[PixieElv in reply to SlowDragon]

Hello SlowDragonThank you 😊

[Hashihouseman]

Can’t understand why the endocrinologist increased your thyroid replacement in any way shape or form with the blood test results you are showing! Your free T3 was fine your free t4 a little on the high side and your TSH was overly suppressed; what the hell did he think giving you 10 µg of T3 was going to do.!?! When we overdose we can create symptoms of hypothyroidism a tissue level it won’t show up in the blood but essentially it’s like having too much sugar…… you end up with a sugar crash! I wonder if the endocrinologist thoroughly checked out your adrenals? Thyroid replacement is contra indicated with weak adrenals in other words you can end up masking adrenal insufficiency with excess thyroid. Go back to the levels you were on and figure out whether adrenal insufficiency or lifestyle is causing afternoon slump. Afternoon slump is not that uncommon in human beings for many reasons we are designed to take naps ! I’d be thrilled to have 5 mcg t3 from all that t4, you clearly convert well. One other thing you could try and it’s very easy to try is splitting your levothyroxine dose into four don’t worry about absorption issues just take it before bed, in the morning when you wake and a couple of times during the day I suspect it will iron out the afternoon nap wrinkle.

[PixieElv in reply to Hashihouseman]

Hi Hashihouseman

thank you. I should say that have central or secondary hypothyroidism, so ignore TSH. It is of no relevance as the pituitary gland isn’t working properly. (T4/T3 low and TSH fine)

I had a Synacthen test and saliva test for the adrenal glands. Synacthen was fine but saliva wasn’t a great test and a bit meaningless, so I will retry this.

I know my results ‘look’ great but when I say afternoon slump, I mean I cannot keep my eyes open. I fell asleep on a kitchen chair while having my hair cut the other day.

It is just all so confusing. One thing is clear that the T3 at the current dose and time isn’t doing me any good

[Hashihouseman in reply to PixieElv]

ah OK quite different in terms of TSH then, that's a bummer, as if the usual complications weren't bad enough I have the same afternoon slump, really severe, resting pulse drops to low 40's torpor! The thing that ameliorates it is 4-5 x a day levothyroxine! Sounds a pain but compared to the roller coaster of T3 it really isn't. T3 is a tricky customer, its the first thing our thyroid would produce as TSH rises, a kind of pump primer or spark plug effect but the real t3 work is done by t4 - t3 conversion at cellular level tissue sites, this doesn't reflect so well into blood levels which are more broad long term sufficiency indicators. So if we ramp up free T3 without our body being in T3 demand mode (which at a plasma level you never are, by all accounts with suppressed TSH, it will confuse things and may not get to the cellular tissue sites before it has had an excess effect along the way. In terms of how we actually feel we need to optimise cellular/tissue compartment T4-T3 conversion and that means sufficient T4 yes but not too much at once because the body is set up for drip feed T4, not all in one go T4, excess will slow down rate of conversion and or increase reverse T3 and or slow down T4 active transport mechanisms.

[PixieElv in reply to Hashihouseman]

Ohh that makes a lot of sense! Thank youI was wondering why on Earth T3 would make me worse when it’s supposed to be the holy grail/thing that our bodies need.

It also makes sense why I felt much better on T4 only

Gosh this is so complicated!

I’ll try and substitute my 12 noon T3 with T4. And try another dose at bed time.

I’ll also look into supporting my adrenals. A lot of what I’m experiencing also sounds like, although functioning under stress, they don’t produce enough during the day.

Hurrah for the great people and advice on here!

[Hashihouseman]

T3 is not a caffeine or cortisol substitute and t4 is much easier to manage in split dosing with similar effect.

[McPammy]

I’d say if you felt ok on 5mcg doses of T3 then go back to that regimen. Do you split your T3 dose leaving 8hrs between. You can have the same symptoms being over or under medicated. I think your afternoon crash is the T3 peaking too high. This will give you a suppressed or very low TSH level which you have. If the bloods your showing was with at least 8hrs without ingestion of T3 then when you take it it peaks atound the 4hr point. Would this coincide with the hour your taking the T3, 4hrs or so later you get a slump. The slump will be the over medicated T3 peak point.

[PixieElv in reply to McPammy]

Hi McPammythank you. It’s good to know that over and under are so similar.

It’s worth mentioning that have central or secondary hypothyroidism, so ignore TSH results. This means the pituitary gland isn’t working properly. (It manifests as T4/T3 low and TSH fine if untreated and is hard to get a diagnosis as most GPs only test TSH).

My afternoon exhausting was a leftover from Levo only treatment. Mornings are great, afternoons are ‘twilight zone’…I thought I could cure it with some T3.

I almost immediately felt less well on T3, even just 5mcg but thought I persevere.

[Snqanq]

Hi PixieElv, me again we are on the same road.. feeling awful..If you dont mind me asking how old are you now regards menopause and whats your symptoms?

As I think of menopause also Im 43 but not sure as it says thyroids illness can mimic ... that make me worst recently with hot flashes night time mostly, more depressed & anxiety..

Im strugging to get sleep.. I need Alprazolam (anti anxiety..) to aid me to sleep

Let me know how you think x

[PixieElv in reply to Snqanq]

HiyaJust DMed you. X