When to consider adding T3?: My story is quite... - Thyroid UK

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When to consider adding T3?

Johnfishman22 profile image
16 Replies

My story is quite complicated, so here's the rundown:

- stable 200mcg for years on synthroid, no symptoms ever.

- stopped for 17 days abruptly, when I returned to 200mcg, severe overmedication

- Have had brain fog and fatigue ever since then, this was 2 years ago.

There is nothing else that I can attribute these symptoms too, it only started when I did this with my dose. Everything is great, ferrite, B12, Vitamin D, inflammation markers, etc. This was caused by severe overmedication.

I have had my TSH all throughout the normal range, on all doses, and none have made a difference.

SOMETHING happened to me when I was overmedicated and it has not resolved. Only theory that has come up is receptor desensitization (doctor mentioned this happens with graves patients).

Current bloodwork on 150mcg synthroid:

TSH 2.24 (Trailing up from 0.98 to 1.37 and now 2.24)

FT4 15 (9-19)

FT3 4.3 (2.6-5.8) - exact FT3 number when I felt fine before on 200mcg

Endo loves bloodwork, might even bump me up to 162.5 next appointment as he wants under 2. Doesn't really make a difference, I have felt the same at all these different TSH levels so it's not just about blood levels anymore. Been on all different doses (125mcg - 225mcg) and still had these issues of brain fog and fatigue. It's not a dose issue anymore or blood level issue.

I have been stable for over a year now on 150mcg. At what point do I say okay, I am not recovering properly, and need to try adding super small dose t3?

I have not seen anyone else deal with this and doctors have NO CLUE why I have brain fog and fatigue STILL since my blood work is fine.

Any advice on what my next moves can be? I have been waiting and waiting and these symptoms have not gone away. Please believe me, this is not something random, it only happened when stopping synthroid then restarting and becoming overmedicated.

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Johnfishman22
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GlowCoach profile image
GlowCoachAdministrator

Free T4 (fT4) 15 pmol/L (9 - 19) 60.0%

Free T3 (fT3) 4.3 pmol/L (2.6 - 5.8) 53.1%

I wouldnt say your blood work is fine. You ahve room for improvement in both FT4 & Ft3, so a levo dose increase should help so long as key vitamins are all optimal.

Johnfishman22 profile image
Johnfishman22 in reply toGlowCoach

Increasing levo made me feel like crap, no traditional hyper symptoms at all. I went up to 200mcg again, thinking I needed to get back to my original dose, and tsh was suppressed, FT4 at 17 (9-19), FT3 was pretty much unchanged and symptoms got worse. That's why I'm puzzled and scared to increase synthroid again, brain fog got even worse.

GlowCoach profile image
GlowCoachAdministrator in reply toJohnfishman22

Could you try a different brand of Levo? Do you have any in the US without lactose for instance?

Even if you add T3 you're likelygoing to need a little more Levo to feel well.

Johnfishman22 profile image
Johnfishman22 in reply toGlowCoach

Good idea, I'm in Canada, so similar stuff to US, I believe there is Tirosint. Right now I'm on brand name synthroid. Wouldn't the brand name work better than generic? Also confusing since I was on synthroid for years with no problems at all until I stopped/restarted. Thanks!

GlowCoach profile image
GlowCoachAdministrator in reply toJohnfishman22

WE are all different and what suits one will not suit another. Just because it is a brand name doesnt necessarily make it any better. Its often the fillers that make a difference.

I used to tolerate lactose in pills but that is no longer the case. It would be worth trying Tirosint or similar or just a different brand/generic.

You're not optimally replaced so that alone is a reason for not feeling great.

Have you tried any dietary changes such as strictly gluten free, possibly also dairy free. Only eliminate one thing at a time.

Johnfishman22 profile image
Johnfishman22 in reply toGlowCoach

Good call. I was thinking that as a first option before adding t3. Maybe I can ask for the generic levo and give that a shot. What would you consider optimally replaced? I seem to convert well. But that FT3 does not correlate with how I feel at all. I know for sure going up and suppressing TSH is the wrong move for me, I did it and I got significantly worse. Almost bedridden due to the fatigue, brain fog and muscle weakness (no fast HR or sleep issues).

GlowCoach profile image
GlowCoachAdministrator in reply toJohnfishman22

Definitely experiment with finding a different brand or generic of levo that may suit you better before adding T3, as that will just complicate things.

Look at the excipients of the Levo you get and try and work out if one ingredient is an issue for you.

Johnfishman22 profile image
Johnfishman22 in reply toGlowCoach

Appreciate it. This only happened after being overmedicated, have you seen/delt with this before? Every doctor assumes after lowering the dose I should be 100% back to normal, but 2 years later I STILL have awful brain fog and fatigue. I was told it should go away over time... 1 year on the same dose and it has not. I'm at my Witts end, I cannot deal with this for any longer. I really did not want to add t3 but see no real other option that could work.

SlowDragon profile image
SlowDragonAmbassador

Was test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Try SMALL increase upwards

150mcg and 175mcg on alternate days or 162mcg daily

Retest in 8 weeks

Please add actual vitamin results and ranges

I have not seen anyone else deal with this and doctors have NO CLUE why I have brain fog and fatigue STILL since my blood work is fine.

You will have seriously shocked your adrenals suddenly stopping levothyroxine.

Have you done 4 point saliva cortisol test and tested DHEA

amazon.com/Adrenal-Fatigue-...

And tested testosterone?

Brain fog ….often gluten

Get coeliac blood test BEFORE cutting gluten out completely

Can take a year after cutting gluten to see brain fog lift

Johnfishman22 profile image
Johnfishman22 in reply toSlowDragon

Test is always around 8:50am. I book an appointment each time.

I am worried about increasing, it made things worse. No traditional hyper symptoms just bad fatigue. TSH has been increasing very slowly on 150mcg though, and I have been on it for over a year now.

I did test cortisol, was fine 194 (140-535) nmol/L

Testosterone 22.3 (8.4-28.8)

I am skeptical about gluten, since I never had issues prior to stopping/restarting synthroid, so this is definelty related to my thyroid. I had no problems before this. Even doc agrees but doesn't know what to do since this is rare, usually people don't just stop and restart high doses.

I have had TSH through range, at 0.68, 0.98, 1.37 and 2.24 now on 150mcg, I felt the same, so shooting for a specific TSH does not help me feel better. I'm stumped.

Thanks for helping as always

SlowDragon profile image
SlowDragonAmbassador in reply toJohnfishman22

I did test cortisol, was fine 194 (140-535) nmol/L

But have you checked diurnal rhythm with 4 point cortisol test

like this

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Johnfishman22 profile image
Johnfishman22 in reply toSlowDragon

No I have not, endo just did that one

Catlover1981 profile image
Catlover1981

Hi. I went through a period of not taking my medication and I was on 150mcg Levothyroxine. I then panicked and went back on it and ended up in hospital with 160bpm heart rate. How did you restart because I was told going from 0 to 150mcg of Levothyroxine could have made the rhythm of my heart go haywire?

Johnfishman22 profile image
Johnfishman22 in reply toCatlover1981

I went from 0 to 200mcg and my heart rate SKYROCKETED and I couldn't sleep, traditional hyper symptoms. Those went away when I lowered the dose but the brain fog and fatigue did not. Can you explain what happened to you? did you get brain fog and fatigue, and have you recovered?

Catlover1981 profile image
Catlover1981

I had no symptoms and was diagnosed with supraventricular tachycardia and they lowered my dose to 125mcg and was put on heart rate lowering medication and touch wood my heart rate is now 75bpm.

Jazzw profile image
Jazzw

When people feel crap trying to increase their thyroid hormone replacement dosage it’s often because of nutritional deficiencies. Low ferritin is frequently an issue, as can be low Vit B12, folate and Vit D.

Have you had any of those tested?

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