How stable can we expect to be on T4/T3 combination therapy? / Hashis and jobs.

[Lotika]

Hi -

I’m on a T4/T3 combination trial and think we might be closing in on the right dose, finally, which is good. I’m not 100% sure yet, but things are definitely better than they have been since I scored an increase in T3 last week.

I feel well enough today that I’m in the mood for considering getting a job at some point. But. What sort of career move I make next really depends on how stable I’m going to be on whatever dose I end up with. On T4 only, I would feel awful for days or weeks at a time for no apparent reason and then feel ok for a few days or a couple of weeks. None of this seemed to coincide with eating well or taking care of myself. I’ve had a bit of this with the trial but think that antibiotics could have been to blame.

So, we could conclude that when I was feeling well on levo only I was having a hashis flare and therefore there is always going to be some wonkiness. Or that my conversion was going up and down with vitamin levels and causing the fluctuations. I felt awesome (by my standards at the time!) on the day they finally tested fT3 and it was at 11%, but I thought my body was supposed to ache all the time, so I’m guessing fT3 must have been horrific on the bad days?!

Has anyone got to their right level on T4/T3 and found that things stop fluctuating so hugely or do the massive fluctuations continue for life? And if so, are they as bad as they used to be on levo only or milder?

I am basically trying to work out if I’m looking for a job as someone with a long term disability, in which case, I likely need to be realistic about what I can take on and indeed, hope to earn, or whether I ought to be stable enough to manage most of the time.

What has your experience been? I am hoping combination therapy is a bit more stable as I won’t be so much at the mercy of my poor conversion... but.. ?!?!

Thank you!

[Wired123]

Hey Lotika, totally resonate with what you have said.

On T4 only lots of ups and downs, mainly bad days with the odd good day. Work was difficult, even simple stuff felt hard and over complicated. I was always frustrated and irritable and looking to avoid work/cut corners.

Added T3 to my T4 and my brain has woken up again and things seem easier. I can take on more and the brain has capacity to do more. I can’t say every day is perfect and sometimes I can now spot which foods have caused it as there are much fewer bad days, so it’s easy to spot that for example wheat or fizzy drinks caused a reaction the next day.

I would try to keep a diary of food, activity and how you feel/mood so you can get a better handle on it.

Good luck!!!

[Lotika in reply to Wired123]

That does indeed sound very familiar!

You’re right - I really did ought to be keeping a symptom diary looking at food and dose timing etc. Taking T3 in the middle of the day is a challenge.

It is such a relief to know that it shouldn’t be as all over the place as it was and that fingers crossed, etc, I hopefully don’t have to let it impact my career more than it already has!

[JAmanda]

I don't think I have flares or fluctuations really, I just think I've never been well and had an ever increasing need for meds as my body got used to each increase. Could it be that you've always needed the meds you're on now and will be well and settled on them?

[Lotika in reply to JAmanda]

I am hoping so!! I definitely did have fluctuations in the past... I never felt right and always had brain fog but some days were definitely significantly better than others, bizarrely.

I will definitely try to keep a track of where we are with diet and exercise and timing of dose against symptoms, though...

[Buddy195 Administrator]

Hi Lotika, I’m still very cautious on the combination treatment..... I’ve not had the ‘eureka’ moment of feeling great, but I’m cautiously optimistic & trying not to worry about having another Hashimotos ‘flare’. I’m liking the sound of the food diary suggested by Wired123 ..... although I never eat gluten, I try to limit dairy & sugar. I’m keen to eliminate inflammation as much as I can. My husband thinks I read into things too much!

[Lotika in reply to Buddy195]

Ha! I definitely read too much into things so I hear you there! So I am achy now, I think because I didn’t take my second T3 far enough from lunch and my lunch probably had lots of iron in it (lentil and spinach soup) which maybe doesn’t help absorb meds either... so it feels like I didn’t take it at all. I am definitely going to start the food diary as Wired123 suggests as there is something going on around diet and absorption / timing of medication, I’m sure of it! I think it is the only way to get to the bottom of things. And I do like a good spreadsheet!

[Buddy195 Administrator in reply to Lotika]

I’m taking thyroid meds at 6:30am and 11pm to avoid food clashes. Taking supplements at lunch & magnesium at 5pm. I’m increasingly tired on an evening, but I’m finding it hard teaching wearing a face mask all day. Looking forward to 3 day weekend already!

[Lotika in reply to Buddy195]

I was doing the same but the endo wanted me to move the second dose to late lunchtime and I have to say it made a difference. He thought it would help prevent the late afternoon / early evening energy crash, which it did to some extent. I have had to move the supplements to bedtime to accommodate it. Oddly i suspect it works better on days I get up later - and therefore take the second dose further away from food! Gosh, yes, teaching at all, let alone with the face mask would be exhausting enough on its own! Roll on the weekend!

[Wired123 in reply to Lotika]

I take mine at 7.30am and 2.30pm, leaves enough of a gap to eat breakfast and lunch without interfering with the T3. Endo feels an hour away from food is ideal.

I’ve found since starting T3 I wake up much earlier than I used to. I attribute this to T3 giving me better sleep quality and also higher morning cortisol.

[Wired123 in reply to Lotika]

If you like spreadsheets then there’s a career as an accountant waiting for you!

[Lovecake]

I am on T4/T3. I have spells where I think “I can do more - get a job - go out more”. Then I have a few days where I think “who was I kidding?”But, there is definite improvement. I do more than when I was on T4 only.

I have a part time job and it’s flexi. That way, if I feel rough I can leave the work until I am ok (I too love spreadsheets, but if I have brain fog, I steer clear of them).

Then you could build up your hours as and when you feel able to. I also work from home, so if I feel up to doing the work after 5pm then that’s ok too.

I may be awkward, but it is taking me a long time to get really balanced with constant energy (that includes brain power). I also get migraines - some connected to low thyroid function, some not - so that is an added bonus for me too.

Good luck, I’m sure you’ll find something that suits you ☺️