Anyone else had trouble introducing synthetic T... - Thyroid UK

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Anyone else had trouble introducing synthetic T3 & found another form that their body tolerated?

FoxyTed profile image
21 Replies

I need T3, I have had a trial of Thybon and it caused very distressing side effects that I simply could not tolerate. I have been working on adrenals eating well, supplementing etc.

I even tried to add another 25 T4 to my 50mg and it was not good!

Is there hope that another form could suit me? Looking for replies that had similar experience - please only reply if it’s positive - I need hope. I see my T Doc in July again but would love a positive story til then. Tk you

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FoxyTed profile image
FoxyTed
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21 Replies
greygoose profile image
greygoose

How much did you start on? If you started on too high a dose that would have negative effects. :)

FoxyTed profile image
FoxyTed in reply to greygoose

Hi GG I took 5mcg first 2 days and it was hell so I went to 2.5 and no better, I could have tolerated the constant headaches for longer but not the mood thing it was awful

Devonlad profile image
Devonlad

Hi FoxyTed, Like you I have tried Thybon Hennin in addition to my Levo, and didn't get on well with it at all, so I've literally just stopped (3 days ago) and just back to Levo only.

I am looking to probably start NDT, once everything settles down in a few weeks time, so no positive news as such, but you are not alone in trying to get the right meds. Good luck and I'll watch these posts with interest.

FoxyTed profile image
FoxyTed in reply to Devonlad

Devonlad yes we are not on our own for sure all In this together, I’m sure we will get there. Keep me posted please if you try NDT hopefully with success🤞

Koababy20 profile image
Koababy20

Could I ask what your side effects were? I’m on Thybon 10ug from 23rd April and experiencing awful anxiety ??

FoxyTed profile image
FoxyTed in reply to Koababy20

Hi Ko, yes I had awful spikes of anxiety, drastic all day everyday headache, I tried for 5 days & had to stop. Did your anx start at time you started Thybon?

Koababy20 profile image
Koababy20 in reply to FoxyTed

Hi FoxyTed, I initially started at the beginning of April on 5ug Roma T3 prescribed by private Endo with no improvement at all, I was then prescribed Thybon 10ug by Roseway Labs Pharmacist consultation on 15th April. There has since been no improvement at all….and as I said in my post my anxiety has gone through the roof to the point where I have been prescribed an antidepressant 😫which has increased the anxiety (GP says this is an initial side effect ),…I have remained on 10ug Thybon as my last bloods showed T3 still only 4.6….don’t know where to go from here,…

DippyDame profile image
DippyDame

It's positive!!

Most of us need to start on a very low dose....how did you start taking the T3

You are on 50mcg now....it should have taken you many weeks to reach this dose.... otherwise it's like putting high octane racing fuel in an old Mini!!

It may be the Thybon ...but it may be the dosing protocol!

We cannot tell without a dosing timeline....sorry!

FoxyTed profile image
FoxyTed in reply to DippyDame

I’m not on any T3 it’s 50mg of T4

DippyDame profile image
DippyDame in reply to FoxyTed

Sorry, I misunderstood what you wrote.

I expect you mean 50mcg T4, not 50mg.

Most people need to add T3 very slowly and in very low amounts.....did you do that?

FoxyTed profile image
FoxyTed in reply to DippyDame

No need to apologise Dippy. Yes I did it v slowly, my Doc suspected adrenals so he said to start on Adrenal cortex for a time but even that started me of again! It’s all about unpicking and teasing out, trouble is it can be very painful at times🤨 He touched on pituitary, my next apt is July, small steps.

humanbean profile image
humanbean in reply to FoxyTed

my Doc suspected adrenals so he said to start on Adrenal cortex

How did your doctor come to that conclusion? Did he test your cortisol levels? Or did he just make it up?

Cortisol is produced by the adrenal glands.

It is true that thyroid hormone levels and cortisol levels are related. But the symptoms of too much cortisol and too little cortisol are not as different as you might expect. And adrenal cortex might be fine if cortisol is too low, but it's a disaster if your cortisol is already too high.

Any doctor suspecting a cortisol problem will probably do a blood test. The better doctors will do it at 9am or as close to it as possible. The bad ones will do a "random" cortisol blood test at any time, and those are useless. Cortisol has a circadian rhythm, and levels at 9am are many times higher than they are at, say, 4pm.

A rough picture to show what I mean :

perfectketo.com/wp-content/...

But even blood tests for cortisol have limited use. Saliva is a better medium for testing cortisol in people like us (with thyroid disease). Cortisol testing in blood and saliva are not testing exactly the same thing. Cortisol is carried around the bloodstream attached to transport proteins (known as bound or total cortisol). For the body to make use of cortisol it must be detached from its transport proteins (known as unbound or free cortisol).

Cortisol in blood is bound or total (or inactive).

Cortisol in saliva is unbound or free (or active).

A good level of bound cortisol does not necessarily mean that free cortisol is at a good level too.

A good test for saliva cortisol is this one :

regeneruslabs.com/products/...

Sadly, the price has risen a huge amount in the last year like everything else on the planet.

...

You might find this link useful :

paulrobinsonthyroid.com/sym...

J675 profile image
J675

My own experience with most of the commercially available T3 hasn't been great and that hasn't been related to the dosage or how slowly I've increased my dose. I've tried TH, Uni Pharma Tiromel and Grossman and each has given me side effects, mostly anxiety and edema. I've switched to compounded slow release T3 which only contains T3, rice flour and some type of cellulose and, although it's not perfect, it's a million times better for me.

Perhaps you're super sensitive to the fillers rather than the synthetic T3 itself.

buggles84 profile image
buggles84 in reply to J675

Where do you get compounded T3?Isn't all T3 compounded with binders?

J675 profile image
J675 in reply to buggles84

There are various pharmacies in the UK that can supply compounded meds with minimal fillers. One of the best known ones, and the one that I use, is Roseway Labs. They can supply T3, T4 and NDT with minimal excipients.

FoxyTed profile image
FoxyTed in reply to J675

Thanks for reply re the compounded. It’s good that it’s suiting you better, is that because you were sensitive to fillers?

J675 profile image
J675 in reply to FoxyTed

I'm assuming so. Over the past couple of years I've become more and more sensitive to foods, toiletries, cleaning products etc. I used to be fine with branded T4, but now... My body says, no way! Literally the only thyroid replacement that I've tried that hasn't caused any issues and that I can tolerate now is the compounded T3.

Brightness14 profile image
Brightness14

You need to start on a very low dose and build it up then, perhaps cut your dose in half to start with and then increase. When I started on T3 mine was 25mcg I had to cut it into 8 parts to start with.

FoxyTed profile image
FoxyTed in reply to Brightness14

Hi Brightness, I started low 5mcg then 2.5mcg but my mood was so so bad I could not stick it out and headaches all day. It’s so frustrating that something we need can be so horrid to bear! I believe there is another way somehow, right now I’m just happy to be half way back to normal - best wishes

Brightness14 profile image
Brightness14 in reply to FoxyTed

Thank you I am lucky in that I have never had a headache in my life I don't know why. I must be missing the headache nerve. I hope that you sort it out soon.

Regenallotment profile image
Regenallotment

It’s likely you need to get your T4 somewhere up around 100mcg for around 12 weeks before considering T3. Annoying but true.

Next step for you is 75mcg T4 if your symptoms and signs show that is what is needed. 8 weeks on that then test again and see if you need 87-100mcg T4 etc. as you get closer to optimal the adjustments get smaller.

When introducing T3 I had to start with 2.5mcg for 3 months, then 5 etc.

I’ve got the t-shirt on wanting to rush but it actually takes longer as you have to unpick all the ups and downs. 🌱

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