Tapering off T3

[Hashiboy]

For those of you who have seen my posts over the past few months you'll know I've been whining about getting to grips with T3 monotherapy as adding T4 nearly kills me. I saw a new NHS endo last week who proposed a very different approach that he didn't think I'd be willing to try. Long story slightly shortened, my hypothyroidism started very suddenly a few years back after an episode of thyroiditis following a viral infection. I was started on T4 but it just made me sicker and sicker. So I started T3 monotherapy last year and loved the energy but hated the palpitations, shakes and anxiety.His theory was this.

1. My initial hypothyroidism was caused by the attack of thyroiditis not long term autoimmune damage.

2. In cases of thyroiditis 80% to 95% of people have temporary hypothyroidism for 6 to 18 months. And it's very likely that under all the meds I have a recovered thyroid gland.

3. I should have been tapered off T4 rather than being constantly told to add more or experiment with doses and brands by the endos I've seen before.

4. I have the polymorphism linked to inability to convert T4 at an intracellular level. So giving me T4 is a double whammy as it suppresses my TSH and stops any release of my own T3 and provides me with T4 I can't use. This leaves me hypothyroid at a cellular level.

5. Switching to T3 monotherapy has helped but the peaks and troughs are not great and it's still stopping my own thyroid from kicking back in.

6. So the plan is to taper off T3 over the next few months and track to see if my own thyroid is now recovered and waiting dormant ready to start working when all the synthetic T3 is gone.

7. I was scared but also delighted cos if this works out then I will no longer be hypothyroid.

8. I'm a week into reducing and so far so good, some fatigue mixed with weird surges in heart rate.

Be curious to know what people think and wish me luck.

[shaws]

I'm sorry it has taken you a long time to find a replacement thyroid hormone that restored your health.

I've had no problems with T3 and take a low dose and it has resolved all of my clinical symptoms and I feel well and energetic.

I had to diagnose myself - despite a TSH of 100 - as GP phoned to tell me I had no problems and TSH was o.k. Eventually I was prescribed levo which caused me to be very unwell but thousands of people do fine on it.

One of the worst symptoms (before T3) was severe palpitations when on levothyroxine but that, too, has resolved. My health has been restored.

I wish you well too.

[Hashiboy in reply to shaws]

Thanks shaws wishing you well too. I'll let you know what happens once I'm off meds.

[shaws in reply to Hashiboy]

Your Endo sounds helpful and I had severe palpitations when on levo mainly during the night (and I was then linked to the cardiologist as he was trying to find out what was causing the palps).

Fortunately I was prescribed T3 and removed T4 and my body liked that better than T4. Palpitations ceased.

I hope everything works in your favour.

[arTistapple]

Sounds like an interesting situation. I hope you post again to let us know what happens.

[Hidden]

Are you still taking a steroid inhaler?

[Hashiboy in reply to Hidden]

Hidden yep, my breathing has never quite back to normal since COVID.

[Hidden in reply to Hashiboy]

I've just been back over some of your posts to sort of timeline it out as I thought it might be helpful to see it.

5 (?) years on just levo - no results. What dose was that?

June 2022 (?) you reduced levo to 25mcg and introduced 40mcg T3. - No results

July 2022 (?) you dropped levo entirely and increased T3. Now on 50mcg T3 only. No results

September 2022 (?) after 8 (?) weeks on 50mcg T3 only your results were

TSH - 0.13

T3 - 4.5 (3.1 - 6.8)

T4 - no result

19/10/22 results on 50mcg T3only were:

TSH - 0.84

T4 - 0.5 (12 - 22)

T3 - 4.4 (3.1 - 6.8)

You tried adding 25 mcg T4 and dropped to 40mcg T3 for 4 days.

1st December 2022 - You added 10mcg T3 - total dose now 60mcg - No results. (although too early to test if you've only been on the dose for 2 weeks.)

[Hidden in reply to Hidden]

I've read your posts as they pop up in my feed over the last few months and I was slightly horrified that your endo added 50mcg T3 in one go! More so to read he's suggesting just not taking any hormone replacement! 😱

Do you have any results for B12, folate, Ferritin, or Vit D?

All these need to be optimal for your T3 to work.

It doesn't sound like high doses is the right course of action for you if you're getting panic attacks after taking your biggest dose.

Looks like there is an absorption issue because 60mcg is a big dose of T3!

Questions:

What were your results that initiated the T4 prescription?

What are your results for B12, folate, Ferritin, or Vit D

What were your bloods on your various different doses?

Have you been tested for antibodies?

Have you been tested for coeliacs?

When do you take your steroid inhaler? - I'm wondering if it could interefere with the T3? humanbean Do you know?

[Hashiboy in reply to Hidden]

Hi Hidden gosh, that's a lot of questions. Please don't be scared that I'm coming off meds. my new endo isn't the private endo who put me on 50mcg T3. I had thyroiditis a few years back (sometimes called sub acute or DeQuervains thyroiditis) so I initially went suddenly hyper, then tested normal then a few weeks later had a TSH of 20 and T4 of 8 (12-22) and was started on levo,. People normally then recover and it looks like everyone I've seen has forgotten this and just added more and more thyroid medicine that I probably no longer need.

Unlike most people here, I'm not under medicated or in need of T3 or NDT. I've probably recovered and am being made sick my thyroid medication messing up my own endocrine system. Once the new endo suggested this it all made do much sense n in the if my history sand reaction to thyroid meds.

My GP was very good and also tested for all the things you mention. All vitamins and iron good and no celiacs. II am positive for antibodies but not highly and antibodies at my level are not always predictive of autoimmune hypothyroidism.

Levo at 130 completely suppresses my TSH. It helped a bit in the beginning but I think my new endo is right. For DeQuervain's the T4 should only be temporary and I've been inadvertently medicated like someone with permanent hypothyroidism. I'll know for sure once I'm off thyroid meds.

And yes 50 to 60 mcg was a very ambitious and perhaps over enthusiastic easy to start T3 and I certainly didn't get on with that. I wonder if private clinicians assume we are paying cos we want T3 so are freer in prescribing.

As of today I'm down to 30mcg and will drop to 20 in a month, so far I'm a bit wobbly at times but definitely keen to continue. Next Thyroid tests in early Jan

Good luck with trying to get your local NHS to provide T3. I'm currently moving in the other direction and hope to be of it soon.

[Hidden in reply to Hashiboy]

Are you vitamins optimal or just in range?

Did you have 2 over range TSH results? or only one?

[Hashiboy in reply to Hidden]

Hidden yep all optimal. When I hit the hypothyroid stage five years ago I had lots of over range TSH results. I was very well cared for and thoroughly investigated but my original endo left so no one thought to check if I'd move past the hypo phase.

[Hidden in reply to Hashiboy]

Sorry for all the questions - I just wanted to get a clearer picture of where things stood!

It might be helpful for someone else in the future to see it all.

My worry is that with repeated over range TSH, and presumably symptoms?, and over range antibodies, coming off all meds in those circumstances sounds incredibly risky.

I wish you well on this journey, and in the kindest possible way hope in the future you don't need to come back here!

I'd be minded to investigate the absorption issue - your T3 should've been higher on 60mcg.

Keep in mind that you might feel very much better once you're off all meds - it's a common phenomena - but you might then feel very very much worse. Keep a keen eye on your symptoms once you're off them.

Lang may yer lum reek!

[Hashiboy in reply to Hidden]

Thanks for all the replies and I'll keep a close eye on what happens to my symptoms and TSH Hidden the news endo promises of I feel awful and my TSH zooms back up he'll get me back onto a suitable T3 or T3/T4 therapy. And humanbean is much more expert than me but I don't think my inhaler interfered with thyroid stuff much.

[humanbean in reply to Hidden]

I'm not sure if steroid inhalers would interfere with absorption of thyroid hormones, sorry. My suspicion would be that they don't, but I wouldn't swear to it. Thyroid hormones are absorbed via the gut, not the lungs.

[Hidden in reply to humanbean]

Thanks Humanbean!

[Dizzy444]

I’m very interested in your situation as I have similar history. I have a private endo who only doses by tsh result, my t3 has never been above bottom of the range. Did your endo think that your would start to work once you were off meds ? Did you have a scan of your thyroid and we’re there nodules, if so how do these affect thyroid function ? Can a scan predict functioning ? I used to be quite fit and healthy but over the last two years I’m now in a position that I’m really struggling, recently I had both knees literally lock up along with thumb joints and walking is quite painful as is using my hands. But as long as my tsh is in range that’s all that matters to the doctors. I wonder if you could pm me your endos name, he sounds really good.

[Hashiboy in reply to Dizzy444]

Hi Dizzy444 No scan, everything decided based on history, previous tests and the fact I get worse on more T4 and T3. I wouldn't recommend doing the same as me without endo supervision and a clear history of subacute thyroiditis of greater than 18 months.

[Dizzy444 in reply to Hashiboy]

Thank you I think I need a good endocrinologist