mental health issues with lio?: Hiya So from... - Thyroid UK

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mental health issues with lio?

malohant profile image
13 Replies

Hiya

So from January to August this year I was on a private trial of T3 (initially 2.5mcg/later 5mcg), which at the time I didn't really notice significant improvement - and both private and NHS endo refused to increase my T3 - but having come off it I'm really noticing the difference; part of which I guess could be down to T3 & T4 half-lives (I came off T3 but increased levo from 100mcg to 125mcg)?

Anyway, that's not the reason I'm posting, just context. If I don't feel any improvement by November/December-ish I will be looking for a way to reinstate T3.

My reason for posting is that during this period trialling T3 I had some quite surprising mental health issues, which certainly seem to now have subsided. I am a 39 yr old man, in a happy hetero relationship (in fact engaged to be married) and would have said I was previously feeling more confident within myself about who I was (up until hashi's diagnosis in early 2020 at least) than any other time in my life. Yet there were two very specific moments which left me seriously questioning things about my identity - sexuality and gender - which I had not had cause to seriously think about since my early/mid twenties. This is not in itself a huge issue I suppose, however I couldn;t shake the thoughts for weeks, and have started a course of therapy to try to resolve it. With stopping T3 these 'identity crises' have subsided and I once more feel relatively secure in who I am, so I am wondering if there is some connection between how I respond to T3 and my mental stability? Are there any known side-effects like this? I did ask my private endo and he basically dismissed it out of hand.

I am getting a bit worried that I am going to have to make a choice in the not too distant future between prioritising my mental health and my fatigue :/

Thanks in advance

M x

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malohant
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Jazzw profile image
Jazzw

I think it’s more likely to be because you were under medicated during the period you were on T3–your doctor dropped your levothyroxine dosage unnecessarily.

healthunlocked.com/thyroidu...

It’s a classic “set you up to fail” move we see here all too often—they give you a trial of liothyronine (but nowhere near enough to have a decent therapeutic effect) while dropping your levothyroxine, then tell you that “obviously” liothyronine did nothing to help you.

Under-medication for hypothyroidism will probably leave you battling a deterioration in mental health. It does for me, that’s for sure!

The fact you feel a little better now is probably because you’re now on an increased amount of levothyroxine.

Leaving the thyroid-y stuff aside and wading into territory I probably shouldn’t (wife of a trans-woman, can’t help myself), I think from time to time you probably will revisit thoughts about gender identity if you’ve had them before. That’s not necessarily a bad thing and it’s not a “wrong” thing either, it’s just part of who you are. The difference here is how you’re coping with it all—and as I said earlier, my own mental health has definitely taken a hit when I’ve been under medicated.

malohant profile image
malohant in reply to Jazzw

Thanks Jazzw

Prior to starting T3 I was on 100mcg levo, which I kept while on 2.5mcg lio but when it went up to 5mcg lio my levo was dropped to 75mcg. I think I felt my best on 5mcg lio/75mcg levo (although still think I was undermedicated, as you say, although I was possibly the least undermedicated I have been). The thing that confuses me is why, then when I felt I had the least fatigue since first taking levo, the mental health issues hit but now, having stopped the lio and feeling much more tired all the time, they have subsided.

Apologies, I know we're all just people with experience of thyroid disorders, I'm not expecting anyone to have the answers exactly but I do appreciate your responding to my post and your thoughts on the subject.

M

Jazzw profile image
Jazzw in reply to malohant

I think the fact you were on some liothyronine (5mcg is a titchy amount) made you feel slightly less fatigued—but it’s important to understand that T3 is only 3-4 times more potent than T4.

It’s not an exact equivalent but that 5mcg of T3 was equivalent to (at best) 20mcg of levothyroxine. Meaning that when you were on 75mcg Levo and 5mcg liothyronine you were in effect on 95mcg levothyroxine. Less than 100mcg.

When you were taking 100mcg of Levo and 2.5mcg of liothyronine you were on the equivalent of (at best) 110mcg Levo.

You’re now on 125mcg levothyroxine. Much better. But the chances are you still might be a bit under medicated. Have you had any thyroid blood test results on 125mcg of levothyroxine?

malohant profile image
malohant in reply to Jazzw

Not yet, waiting 2 months before testing.

Lotika profile image
Lotika

In general, I pile on the mental health issues when under medicated; it is low T3 that I particularly notice in my own case: I become quite depressive, very anxious and a little paranoid.

I would agree that endos quite often seem to drop overall dosage by too much when adding T3. They seem to go with the old mantra that 5 mcg T3 is equivalent to about 25 mcg T4, whereas newer research - and my own body - would put the equivalence closer to 5 mcg T3 to 15 mcg T4.

Additionally, thoughts - and emotions - are just harder to deal with when undermedicated and floating around in a haze of brain fog!

I know almost nothing about trans issues from personal experience but I think the process of getting married, being so liminal, invites a general questioning around what sort of life we want to live, so from that perspective, it makes sense that you would be thinking about this now. That having been said, the wrong level of thyroid medication can impact us on a psychological level because the brain isn’t getting what it needs, so something of both, perhaps?

BiscuitBaby profile image
BiscuitBaby

hi malohant

I just wanted to say that i agree with poster suggesting under medication. I am trialling t3 at the moment too and i was initially on 125 and 10. The nhs endo reduced this to 75/15 which really didn't feel right. Some things were better but some worse. Its almost as if there wasn't enough to go around. I suspect being male you need a slightly higher dose than me. I think t3 is 3x more than t4. So that would be 15 plus your 75 which is 90. That is less than your original dose. I might be totally wrong in my guess work and someone with more experience than me might come along and correct me!!! But that is my limited understanding of how its worked. You might find that your particular thought patterns were the start of thyroid issues in thr first place. It can take years to manifest in a way you can actually put your finger on! I think if you trial t3 again you maybe dont need to drop levo so much. I hope you find peace with yourself!! Im sure your wife to be is genuinely happy to have someone who is mature enough to process these thoughts and deal with them.

BiscuitBaby profile image
BiscuitBaby

ha! Just noticed that your dose was 100!! Either way...100+15 still less than 125!! Must remember not to post after friday night glass of vino!!!

ashquar profile image
ashquar

Hi

I have agrreed with my endo to trial levo and lio at the moment I'm on 100 levo and 10 lio.

I was self medicating with lio and had a small window of feeling somewhat well,

Now on this my mental health is on the floor and my energy with it.

I know it is the levo giving me these side effects.

Hope this helps.

Hookie01 profile image
Hookie01

Hey, im currently only on levo, waiting to go back on T3 but, i just wanted to say that if i try to increase my levo it also affects my mental health. I get very teary, i hate myself and quite frankly don't want to be here. I get more tired, can't get out of bed etc and my body hurts. Did you actually test your levels when you were on lio?

malohant profile image
malohant in reply to Hookie01

Yes last tests before coming off were TSH: 0.45 / FT4: 12.1 (12-22) / FT3: 4.9 (3.1-6.8). I argued that my FT3 needed to be higher but endo was having none of it.

I definitely have been more tired / unable to get out of bed / body constantly aching since stopping lio. This fatigue has an effect on my mental health too, obviously I get more exhausted and then get easily irritated or grumpy.

The issue I'm asking about is different, I was generally feeling more stable in terms of both fatigue and emotional instability except for these two distinct occasions.

raglansleeve profile image
raglansleeve

For me, too much Levo caused anxiety, but I also believe that anxiety I had before being diagnosed as hypo, was caused by too little thyroid hormone. So many symptoms show up with both hypo and hyperthyroidism, that I think an exact balance is needed on an individual basis (which is really hard to find!). I'm also on Lio, but increases and decreases to that have never affected my mental health. I have not yet found an ideal spot, because some symptoms are still with me, but I'm caught with having to live with some of them to avoid others.

Chouchou1234 profile image
Chouchou1234

hi

I might throw something into the mix . I have insanely low T3 and when I started T3 it was the first time in years i started feeling my sexuality again. I was thinking it’s the hormones kickstarting. I’m confident to know that I like both sexes so it doesn’t bother me but since T3 I definitely have have had my sexuality ignited. But again I’m 46 had T3 of 2.1 before so I was flat lined completely and now my T3 is o ly 4.4 (4 to 6.8) so jeeez if it goes up ⬆️ I’ll be like hello!

But saying that my body dysmorphia is totally out of control so that is mental issues I can literally feel my body expanding. It’s really bad . So yes to that those have gone insane.

Hope your ok and sending a virtual hug .

I don’t know much myself and just started T3 3 months ago and currently on 20mcg a day.

malohant profile image
malohant in reply to Chouchou1234

Hi chouchou

Thanks for your reply, hope you're doing ok.

My FT3 has always been around 4-5 (range 3.1-6.8), it just squeaked up to 5.24 at its peak on lio but then dropped back down to 4.9 on the last test before I stopped it. So I don't know but I don't think it's the same to do with increase of FT3. More wondering if its a side effect of taking it, it is a hormone after all and therefore changing in some way the hormonal balance of my body (which of course would be somewhat different to yours!)

But I do get what you're saying, I think, when I was starting treatment I had very low libido, barely energy to move never mind think about that. It has got better (although still requires significant planning/energy cost, romantic I know) but peaked when I was on lio and is slightly diminishing again with the return of fatigue.

M x

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