STILL can't find my dose

[Johnfishman22]

Last time I posted, I was going up to 225mcg, when at 200mcg my tsh was already 0.04 and FT4 17(9-19). Biggest mistake I ever made.

I ended up feeling worse than ever before on 225mcg after about 4 weeks on it. The most SEVERE bedridden fatigue one could experience and the worst brain fog ever. No typical "hyper" symptoms such as fast HR and insomnia, but I did have palpitations.

More is NOT better and was definitely the wrong move. Suppressing my tsh makes me feel even worse. Literally bedridden. I thought theres no way these are hyper symptoms, but they were, it got 10x worse increasing the dose. My tsh cannot be suppressed and matters.

I was told to take 2 weeks off then restart on 150mcg, when in the summer my tsh was 1.04 on it. and just wait many months.

I have been on 150mcg for 13 weeks now, and my symptoms I experienced on 225mcg are STILL here. I can't described how tired I am.

on 150mcg after 13 weeks:

TSH: 0.62

FT4: 14 (9-19)

Going up in dose is not the move, hyper symptoms are literally the exact same as hypo, if not worse. I am seeing an endocrinologist very soon.

When I felt fine, TSH was 1.46 (old post go over this a lot).

How do I get myself out of this mess? Please share any advice, or if you have been severely overmedicated, please share how you got out of it and how long it took. I will do whatever it takes.

Thank you!

[Buddy195 Administrator]

I experienced similar symptoms when I increased my dose too quickly, that’s why I’m now an advocate of low and slow changes. I only add 12.5mcg (alternate days at first), then move to 12.5mcg daily when well tolerated. I find a pill cutter useful for this task.

Was FT3 tested? This would give a complete picture of your thyroid health (and show how well you are converting)

How are your key thyroid vitamins (folate. Ferritin, B12 and vit D)? If these are not optimal, I know from experience that adverse symptoms can worsen.

[Johnfishman22 in reply to Buddy195]

Thought I was going insane thinking I still am hypothyroid with a suppressed tsh - I have been overmedicated before when I stopped 200mcg then restarted it, I had typical hyper symptoms such as fast HR, can't sleep, hot, sweating etc..but none of those this time around. FT3 was not tested, but it has always been solid for me, last time on this dose it was 4.8 (2.6-5.8), and it may even be higher since tsh is lower than previous on same dose (1.04 to 0.62). All vitamins are great, made sure of that! Can it take a while to recover? I'm at 13 weeks and nothing has happened, super strange.

[Buddy195 Administrator in reply to Johnfishman22]

Yes, for many of us it is a slow and bumpy ride to reach optimal thyroid levels. Hang in there!

[SlowDragon Administrator]

What are your most recent vitamin D, folate, B12 and ferritin results

Exactly what vitamin supplements are you taking

As you have Hashimoto’s you may need to be gluten and/or dairy free especially since you became extremely hypothyroid stopping levothyroxine for 17 days

Stopping levothyroxine as you did will have severely shocked adrenal system ( a bit like severe trauma)

It takes many many months for adrenal system to recover

Have you tested testosterone levels or DHEA levels

Also test

Cholesterol levels

Kidney function tests too

[Johnfishman22 in reply to SlowDragon]

I am going private (Canada), and will get these tested, thank you. How is my tsh at 0.62? Could this still be too low for me?

Currently taking 3000IU Vitamin D and 1 B12 tablet daily, that's it.

I am assuming you may have seen/been in this situation before. Can this take months of recovery even while at the same dose? 150mcg tsh 0.62 which is lower than when I felt ok at 1.46 and was on 200mcg, wild the difference now.

[SlowDragon Administrator in reply to Johnfishman22]

You must test TSH, Ft4 and Ft3 together

Just testing TSH and Ft4 is inadequate

Test early morning and last dose levothyroxine 24 hours before test

And you need to test vitamin D, folate, ferritin and B12

Probably need daily vitamin B complex.

Might need separate B12 as well

Test first

Sudden withdrawal of levothyroxine, adrenals would have had to dramatically increase to compensate

Initially cortisol would increase significantly but can then drop if can’t maintain necessary increase…..

So your cortisol levels could be inappropriately high or low

Can take months to resettle and recover

You just have to wait. Maintain optimal vitamin levels and optimal Ft4 and Ft3

Approx 86% of Hashimoto’s patients find gluten free diet of benefit or essential

And approximate 50% find dairy free is similar

In U.K. we can do saliva cortisol test. Don’t think it’s available in Canada

Check out Canadian Thyroid support group

thyroidpatients.ca/home/sit...

Saliva cortisol test example

regeneruslabs.com/products/...

portal-app.inspira-regeneru...

[Johnfishman22 in reply to SlowDragon]

my FT3 has always been solid, it was 4.8 (2.6-5.8) last time on this dose, which was last summer, I just kept increasing back to 200mcg because that's what I thought I needed since I was on it for years. For whatever reason, going off it, I don't need as much levo as I once did, no clue why. Even 150mcg is borderline too much.

When I felt good my FT3 was always between 4.2-4.4, never once did it test higher.

Willing to wait as long as it takes. Just don't want to make sudden changes.

It's been 13 weeks on 150mcg, should I wait 6 months?

[tattybogle in reply to Johnfishman22]

but .... don't rely on your previous 'solid' fT3 history ... something has clearly changed.

eg. when TSH is lower on same dose, one explanation could be that fT3 is higher.

[Johnfishman22 in reply to tattybogle]

Yes exactly. The only test which has correlated most with how I feel through all this is my TSH, which everyone says is terrible. I thought that too, then suppressed it like crazy and felt WAY worse. Those hyper symptoms are fatigue and brain fog, x 20.

Last summer when my tsh was 1.81 (125mcg), and then 1.04 (150mcg), I didn't feel normal, but likely rushed it and needed to wait months on months.

Working my way from 125mcg to 200mcg again, tsh 0.04, I started being unable to finish a workout. Severe muscle weakness, couldn't catch my breath. Thought it was hypo symptoms, it wasn't. Went to 225mcg and was bedridden for a few months, and still feel like that right now on 150mcg.

I think my timeline expectations were messed up. I just hear after 8 weeks I should know, or even 12. Well it's been 13 now and nothing has changed on a way lower dose that I felt better on in the summer than now. I'm thinking I need 4-6 months on a lower dose like this, or even to go back to 125mcg and get my tsh between 1-2 again.

[tattybogle in reply to Johnfishman22]

personally , when symptoms are not clear and blood results are confusing/ illogical after 2/3 mths on a dose .... i will wait another 2/3 mths on same dose and retest to see if things are staying consistent , or if anything is going to change by itself . If i'm going to make change in dose i want to be as sure as i can be that it's not just a blip .

Boring, i know ..... but when i'm not sure which direction to go i'd rather have two tests a few mths apart on same dose, to get a better picture before deciding which way to jump.

my own (often weird/ inexplicable) results have taught me not to take one set of results as proof of anything ..and that testing again a few mths later can give very diff. results for no apparent reason ... or that what i expected to happen to them does eventually happen .... but not until 6 or 9 mths after i thought it should .

sometimes my TSH result is so inexplicable that i swear it's 'answering the question before last'. (ref. Two Ronnie's mastermind sketch)

eg. my recent decisions and timescales :

January (4 mths after lowering dose from 112.5 to 100mcg) :

TSH 2.65 [0.57-3.6]..... fT4 15.7 [7.9-14] 128%

TSH 2.9 [0.27-4.2]....... fT4 22.1 [12-22] 101% ..... fT3 4.0 [3.1-6.8] 24%

both on same day taken 1 hour apart.

bit confusing due to high fT4 AND higher than expected TSH. (my TSH has been stable at around 0.05 ish for many yrs previously while fT4 wandered anywhere between 60% to 200% )

so kept same dose .... 10 wks later:

March (same dose / timings etc as previous test)

TSH 1.65 ]0.27-4.2] ... fT4 22.2 [12-22] 102% .....fT3 4.0 [3.1-6.8] 24%

So on the basis of a consistently high end fT4 that was definitely not just a blip, i lowered my dose to 87.5mcg....... i wouldn't have lowered it based only on Jan results.

i am now ready to test again (but annoyingly i got ?covid and then had a tooth abscess and antibiotics recently ... so i have been feeling pretty lousy for weeks now , but am still waiting a few MORE wks till properly over that lot before testing ...... even more boring .

i have literally no idea what next results will be..... logically i'd expect a dose reduction from 100 to 87.5mcg to result in lower fT4/ higher TSH / fT3 a bit higher (because high T4 levels reduce conversion of T4 to T3)

but nothing would surprise me..... so i'll not be taking any bets.

[radd in reply to tattybogle]

‘sometimes my TSH result is so inexplicable that i swear it's 'answering the question before last'. 🤣😆

[Saraaaaz]

if I were you I would get free t3 tested at this point. Get tsh and ft4 at the same time of course for a complete picture. The free t3 result could provide you with the answer to your symptoms. you can’t assume ft3 will be good just because it always has been in the past. Your body is clearly different now. For myself, as I got older, I have needed higher doses and my blood results look completely different than they did even two years ago.