Anyone for a bit of encouragement?

[UKmale_hypo]

If anyone wants to give me some encouragement, that would be just great.

I am titrating up on Levo having been diagnosed with central hypothyroidism last year (well, having diagnosed myself, then explained it all to my endo, then them agreeing). My latest results are below, with the testing being done 4 weeks after being on the doses stated:

04/01/2023: TSH 0.80 FT4 14.2 (9-22) (75mcg)

06/02/2023: TSH 0.46 FT4 14.2 (9-22) (100mcg)

I went up to 125mcg after the last test, so due for testing again at the beginning of March. My consultant said to increase, and to aim for the top of the FT4 range, and probably around 150mcg dose.

I am feeling worse, but I understand that one can feel worse before feeling better. Also, as perhaps the above results show, part of the medication I am taking is actually only replacing what my body is now 'refusing' to make (so to speak), hence the same FT4 but lower TSH (at least that might be part of it). I am feeling increasingly cold, especially in extremities, and also slightly worsened brain fog and mood.

I think my understanding is right, in that it's a question of hitting the sweet spot in terms of FT4 levels and dose, so I am hoping that things will improve when I increase further, and this is just short term pain. I've also been told that titrating up is a rocky road, and not a linear type of improvement. I think I am correct in all of the things I say, but I so still feel rubbish and it's a lonely journey.

In a way it is comforting to see my levels quite far away from where the target is (20+), so the levels and how I feel do tally. I've been told my max dose is 1.6mcg x weight in Kgs, and that's 144, so near enough 150.

So, who wants to join my pity party? Anyone?!

[Greybeard]

Most people do well on levothyroxine once their levels are stabilised so fingers crossed you will be one of the majority. Let the titration process take its course. If at the the end of it the doctor says you are fixed and you still feel like poo, please come back for further advice.

[UKmale_hypo in reply to Greybeard]

Thanks. Yes, I think things will get better - all the evidence suggests this is what will happen. It's a long old slog though, and I am nearly 13 years into really dreadful ill health, so it's been really tough.

[Greybeard in reply to UKmale_hypo]

Yes doctors don't seem to like to admit that people have an underactve thyroid. Uncharitable people could think that doctors are a bit scared of hormones.

[PurpleNails Administrator]

Well it good news you found a sensible endo wiling to treat you.    

You are now on the right track & that’s it encouraging. 

Increases are usually a gradual process & going too fast can cause worse symptoms because the fluctuation is more severe.  

You are increasing a little faster than is recommended & that it better tolerated by some but is counter productive for others.

I know that you have secondary hypothyroidism & waiting for TSH to adjust isn’t such a factor, in your case, but you haven’t had FT3 tested so you can’t tell what exactly is going on with conversion. 

Did FT4 stay exactly the same with the further increase? You would expect to see FT4 rise so FT3 might be altering at greater rate, without testing you can’t be sure.

L-T4 does decrease natural output, but this is usually from a TSH response & that’s what takes time to fully adjust.

The dose of 1.6mcg x weight in Kgs, is a guide not an exact calculation. Also aiming for the 20+ FT4 may not be suitable.  Many do feel best at as FT4 75% & FT3 - 50 - 60% but some naturally feel best with lower than that & that’s another reason why going slower and allowing symptoms to settle is a better approach.  

The down side is we have to be patient & accept gradual improvement when we believe we need more to feel better & I have sympathy for anyone struggling with this. 

Next step - leave 6 weeks on unchanged dose before re-testing.  Include FT3 and key nutrients folate, ferritin, B12 & vitamin D.  

[Rapunzel]

S L O W journey and I can appreciate your ever so gently simmering angst. I won't join your pity party I've got new shoes and I'm ready for the weekend. Pity they're for display purposes only...this sh*t has affected my balance badly 🙃

I gift you acceptance ( a present I might have liked when I was beginning my journey) and hope that T4 is the answer to your quest, as it is for around 80% of those with hypo issues, once the sweet spot has been reached. Might be an idea to have your vitamin levels and T3 tested to give a more rounded idea of where you're at. SeasideSusie Bluedragon help me with the important ones.

Having a supper party shortly; you're welcome to attend. Thick fillet steak later and a couple of glasses of Stellenbosch, maybe a doobie. Life is beautiful and pity ain't too pretty, dude. Loosen up, geezer, we're all rooting for you.

[tattybogle]

Think 'longer' not 'faster' is my rule of thumb nowadays .

i've found the first 4 or 5 weeks after any change in Levo dose .. (even a small change like 12.5mcg) are likely to feel 'not so great'... during those weeks the body is still trying to figure out "WTF just happened" and recalibrate itself .

So pretty much ignore how you feel for those weeks .....pay more attention to how you feel after week 5 onwards on a new dose. It's not just the TSH that takes time to give a true reading following a change in levels .. the body itself takes quite a while to give a true indication of how that dose will feel... and when the dose is about right, how you feel will start to improve slowly after that initial period of WTF has settled down.

also don't make any assumptions about how much you will need .... that 1.6/kg estimate is about as much use in practice as estimating how long it will take someone to drink a pint of beer.

most people on here are not on 1.6/kg .. some are on quite a bit less , some are on quite a bit more.

have faith you're getting somewhere .. and allow it enough time to work .

[JAmanda]

you’d be better to test for t3 levels so you can monitor your progress, I think. But yes it takes time to see any improvements.