Was hoping for some advice please: Didn't really... - Thyroid UK

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Was hoping for some advice please

Jefner profile image
19 Replies

Didn't really receive any advice from my previous post

healthunlocked.com/thyroidu...

After dropping from 125mcg Levo to 100mcg and retesting after 9 weeks, my T4, very surprisingly, is still quite high in range and I think I still feel overmedicated. As with last year's results it I expected it to have gone right to the bottom of the range on 100mcg but it hasn't. Obviously down to this damn Hashi's.

Because it is difficult to really tell what is going on because of the continual anxiety, I am still feeling more jittery, shaky, tremors,irritable, overemotional, erratic, blurry vision, depressed, Difficulty concentrating,Fatigue/feeling extremely tired, feel too warm where others feel cold, slightly loose bowels, intermittent palps.

Most have a sweetspot in their T4 range? Mine is still quite high.

I dont know what to do about my T4 dosage? I know my T3 still needs looking at but arn't we supposed to work on one thing at a time?

I am thinking of dropping by another 25mcg because looking at my latest results, the drop from 125 to 100 didn't have that much of an impact in bringing my T4 levels lower (from 22.7 to 20.5).

From much earlier results 75mcg has never been enough for me but that was then and this is now. I feel like I am losing control of everything and need some help please

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Jefner
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19 Replies
Buddy195 profile image
Buddy195Administrator

I always adjust by 12.5mcg Jefner, as I find 25mcg too much of a change and large adjustments seem to spike my anxiety. Adjusting gradually also enabled me to find my ‘sweet spot’ where I feel most well. Some members are absolutely fine with FT4 high in the range, but personally I like mine no higher than 60-65% in range, although I seem fine with FT3 higher. It’s tricky to find the dosage where you feel most well, physically and mentally.

Jefner profile image
Jefner in reply to Buddy195

i have never found a dose where I feel well, and everyone will say it's down to my low T3 but most forget that I have had anxiety issues on and off for most of my life so this damn thyroid stuff is just exacerbating it all. From memory I don't do that well on high FT4 but as I said considering the 15mcg drop over a 9 week period didn't make that much difference in my levels, another 15mcg might do it so then I can tackle my low T3.

Someone said to just add more T3 and it can suppress my high FT4 levels so I wouldn't need to decrease. Is that right?

I am just at a total loss in what to do, it just seems to all be getting worse rather than better. I don't seem to be able to stabilise for long on any dose and I am tired of chucking more Diazepam down my throat just to be able to get through each day

I wonder if it's worth trying another Endo, although I did last year and all I got back was "you are adequately medicated" and he could see my T3 was at rock bottom and just sent me off

Buddy195 profile image
Buddy195Administrator in reply to Jefner

Someone said to just add more T3 and it can suppress my high FT4 levels so I wouldn't need to decrease

Personally, I reduced Levo prior to adding Lio and therefore ensured my FT4 was well within range.

I agree that increasing your FT3 will likely benefit your mental health; I felt so much better ( as a poor converter) when adding Liothyronine and getting FT3 higher in the range.

Jefner profile image
Jefner in reply to Buddy195

yeah but what do you consider "well within range"

Buddy195 profile image
Buddy195Administrator

Free T4 20.5 (12.0 - 22.0 pmol/L)

Am I correct this was your last test result? Many would consider this well within range.

I just pointed out that (for me) I need FT4 lower than this, as I’ve found FT4 high in the range does affect my anxiety levels.

Jefner profile image
Jefner in reply to Buddy195

yes that's what I mentioned in my post, I feel I too need it lower and I was greatly surprised that dropping it by 15 barely dropped my FT4 (from 22.7 - 20.5) compared to last year when it hit right at the bottom when I did exactly the same thing. I hate this Hashi's I just can't get my levels right at all

Buddy195 profile image
Buddy195Administrator in reply to Jefner

greygoose and others provided me with reassurance that Hashis is a bumpy & somewhat challenging journey for many…that’s why we have so many forum members. Hang in there Jefner… continue to make slow, steady adjustments until you find the right level for you.

Jefner profile image
Jefner

helvella

helvella profile image
helvellaAdministratorThyroid UK in reply to Jefner

I think the experiences of people who take, or have taken, T3 are far more valuable than my guesswork. :-)

Jefner profile image
Jefner in reply to helvella

I just don't know what to do about my still high FT4 levels.

helvella profile image
helvellaAdministratorThyroid UK in reply to Jefner

Go slowly.

You could drop by 12.5 and see how it goes. You might feel otherwise but it is something that can reasonably be done slowly. If you drop by 12.5 and, if you really feel it has not done enough, drop by another 12.5. Even if that is "too soon" by the usual suggestions.

Jefner profile image
Jefner in reply to helvella

yes, even though it was recommended by my April results I drop to 112 from 125 because of being over range, my gut feeling was to go back on 100 and risk going hypo as I did last year when I dropped the 15mcg. When I was on 125 and dropped to 100 my FT4 hit rock bottom of the range which is why I went back up to 125. So obviously dropping again back to 100 again in May, I just ASSUMED my FT4 would hit rock bottom again but it's barely touched my FT4 levels. My latest result back on 100 took me aback it really did. I am glad I went on my gut feeling tbh and didn't drop to the 112mcg as planned or my FT4 might barely have dropped at all. See the difference, it's barely budged from 22.7 and I still feel overmedicated.

July 2023 100mcg Levo ........Free T4 12.0 (12.0 - 22.0 pmol/L)

July 2024 100mcg Levo ..........Free T4 20.05 12.0 - 22.0 pmol/L)

This damn hashi's is a complete nightmare, I am up and down like a yo yo and have never been stable on any damn dose for years now and am at a total loss.

I could try dropping by 12.5mcg which would equate to an 87.5mcg dose but looking at my results in that dropping by 15mcg barely made any difference, I just can't help thinking 12.5mcg won't be enough and if I tried that, how long would it be before I felt it wasn't enough and had to make another tweak. Not sure how I could work out the drop of 12.5mcg as my tabs are 100 and 25. How would I cut my tabs to get that dose?

My T3 needs attending to I know but every time I look at doing an increase I get crappy test results where my FT4 is either too low or too high and it gets put on the backburner until I can get my FT4 levels in a better place but at the moment I just don't feel I am EVER going to stabilise on any dose, it's all over the place and has been for years

SlowDragon profile image
SlowDragonAdministrator in reply to Jefner

I would only reduce by SMALL amount

Perhaps by 12.5mcg on 4 days per week

Retest in 8 weeks

Jefner profile image
Jefner in reply to SlowDragon

hey@SlowDragon was hoping you would be around. thanks for replying. So even though lowering by 15mcg from 125 didn't have much of an impact in lowering my FT4 ie. was 22.7 on 125mcg....9 weeks later on 100mcg = 20.5....you think that dropping to 75mcg might be a little too much?

What about if I alternated between 100 and 75?

SlowDragon profile image
SlowDragonAdministrator in reply to Jefner

Yes … try 75mcg either 3 or 4 days a week …..retest in 8 weeks

Or cut tablets and take 87.5mcg daily

Litatamon profile image
Litatamon

How long are you waiting between these drops?

Jefner profile image
Jefner in reply to Litatamon

last tweak was 9 weeks ago when I tested

Litatamon profile image
Litatamon in reply to Jefner

Okay, did I miss your t3 result or is it never tested?

Jefner profile image
Jefner in reply to Litatamon

it's listed in my original post if you click on the link

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