T4 Treatment Success Rate?: Hello, I'm sure it's... - Thyroid UK

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T4 Treatment Success Rate?

Jampuppy profile image
23 Replies

Hello,

I'm sure it's hard to get accurate statistics, so maybe I could see if very many here have been happy with their improvement since taking T4.

If you have been satisfied, how long did it take to get to the right dosage?

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Jampuppy profile image
Jampuppy
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23 Replies
bantam12 profile image
bantam12

I'm fine and dandy on T4, can't remember time frame as to long ago.

Jampuppy profile image
Jampuppy in reply to bantam12

Glad to hear it bantam12! Wishing you continued fine-and-dandiness!! Thanks for commenting!

Clutter profile image
Clutter

Jampuppy,

Most people do well on Levothyroxine when they are optimally dosed. It is estimated that there is a subset of 10% to 20% of patients who don't do well on Levothyroxine only and they may benefit from the addition of Liothyronine (T3). There doesn't appear to be an estimate of how many patients do not tolerate Levothyroxine at all and require T3 only.

Jampuppy profile image
Jampuppy in reply to Clutter

Hmm....That's great. Unfortunately I seem to have a sensitivity to the fillers in Levothyroxin. But I have just started Synthroid and am hoping I fall within the *other* small subset of those who cannot take the generic T4 but do well on the brand name.

Jampuppy profile image
Jampuppy in reply to Clutter

Are those UK stats? Or worldwide?

Clutter profile image
Clutter in reply to Jampuppy

Jampuppy,

I've always assumed they're worldwide as I've not seen regional breakdowns.

Jampuppy profile image
Jampuppy in reply to Clutter

Thanks for the comment Clutter!

diogenes profile image
diogenesRemembering in reply to Jampuppy

I would put it this way. Most countries (Europe and USA for example and probably Japan) would agree with the 10-15% estimate for those who don't do well on T4 only. Unfortunately in the UK we seem to have obscurantists in medicine who claim it is only a very few percent. However they cannot know this, because so many patients remove themselves from direct medical care and go it alone and so are not part of the estimates since they are outside the system.

Jampuppy profile image
Jampuppy in reply to diogenes

Right. Accurate stats would be difficult to compile. Are you on T4?

diogenes profile image
diogenesRemembering in reply to Jampuppy

No, but my wife has been for nearly 50 years.

Jampuppy profile image
Jampuppy in reply to diogenes

And doing well, I trust?

diogenes profile image
diogenesRemembering in reply to Jampuppy

Yes until age starts butting in.

Jampuppy profile image
Jampuppy in reply to diogenes

Ahhhh yes! Then the oestrogen starts up! Fun times!

Lindal11 profile image
Lindal11

Hi I have been taking t4 for over 10 yrs and i still didn't feel well i put about 4 stone in weight exhausted all the time hair loss etc. It was only when I was put on t3 about 3yrs ago that I started feeling better. And now that's been stopped !!!!

Jampuppy profile image
Jampuppy in reply to Lindal11

Oh no, Lindal1! I'm so sorry to hear it! Why has T3 been stopped?

Rapunzel profile image
Rapunzel

nhscc.org/latest-news/400m-...

This is in the UK, jampuppy so will not affect you the other side of the pond. I would suggest that the HUTUK forum is not the best place to find an answer to your question.

Although there are a few like bantam12 who do well on levothyroxine (T4) the majority of posters come here because T4 has failed them, or they have not been able to secure a large enough dose to feel well. So the undermedicated, unmedicated ( can't get diagnosed ) and alternatively medicated tend to congregate here. There are many who claim that T4 monotherapy works for them but we are still doubtless overweighted by the 'doctor knows best' brigade here in the UK.

peoplespharmacy.com/2015/01... gives the testimony of one visitor to the site which from my experience would be absolutely typical of how unfortunate a person with hypothyroid issues is, should T4 monotherapy not work for you.

Jampuppy profile image
Jampuppy in reply to Rapunzel

I disagree. I don't think the country is relevant. That I am only beginning on this path, means that varied reports on the effectiveness of T4 is maybe even more valued than for those who are old hands and have made up their minds. So, I would like to continue to listen to people's experiences, here in the USA, in the U.K., China, Bali, wherever one may find himself, and consider each story during my own adventure toward balanced hormones.

helvella profile image
helvellaAdministratorThyroid UK in reply to Jampuppy

Jampuppy,

I think it is great that you are trying to make up your own mind. What we learn for ourselves is so valuable.

However, I do think country is very important. There are so many reasons ranging from diet (what people eat, which nutrients are plentiful, and which are short), medical standards, which medicines available, etc.

For one simple example, I found it difficult to feel right on any of the four formulations of levothyroxine available in the UK. I switched to Aliud and Henning (German makes) and felt much better. Only a few in the UK would realise this was worth trying.

Regarding standards, we in the UK seem to suffer from the perception that doctors cannot diagnose hypothyroidism when TSH is under 10. (Not quite true, but all too often that is what happens - people have to wait until then.)

At present, I seem to be doing OK on levothyroxine monotherapy, but am so very well aware that many do not.

Jampuppy profile image
Jampuppy in reply to helvella

Well, okay it is relevant with regard to drug formulations available, but it's still research worth considering.

Diet to a lesser degree, I imagine unless you live in an isolated area where people maybe are not educated and/or with little organic, raw or international food. Where I live, all of those are available and dietary choices are widely varied. There is no local diet. I have fruitarian friends, vegan, paleo, poverty-stricken relying on prepared food only, hunters, fishers, Indian, ...you name it.

Jampuppy profile image
Jampuppy in reply to Jampuppy

Also, whether docs here diagnose really is luck of the draw. Thankfully I ended up with an endo who considers test results but treats symptoms.

helvella profile image
helvellaAdministratorThyroid UK in reply to Jampuppy

Most of those in the UK who are hypothyroid don't end up with an endo. At all.

Jampuppy profile image
Jampuppy in reply to helvella

Same in the USA. I only was referred to an endo because I am in treatment through the Veterans Administration and they're weird. lol

Jampuppy profile image
Jampuppy in reply to Jampuppy

And I had to fight to get the referral!!

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