Anyone had Reverse T3 problems: Just wondering if... - Thyroid UK

Thyroid UK

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Anyone had Reverse T3 problems

Hidden
Hidden

Just wondering if anyone had RT3 test done to try and solve their ongoing symptoms. Been on a T4/3 combo for 4 months and still not managed to feel well, despite titrating dose.

14 Replies
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The opinion is that you stop taking T4 which is turning into reverse T3 while taking T3.

THINKING THAT SYNTHETIC T4 ALONG WITH SYNTHETIC T3 IS JUST AS ADEQUATE AS NATURAL DESICCATED THYROID Adding synthetic T3 to your Synthroid or other T4 brands is definitely a step up from being on T4 alone! We applaud that addition. But….to say it’s equal to being on desiccated thyroid t’ain’t so. Too many patients who have been on the synthetic combo, and switched to desiccated thyroid, report that the results were even better. That’s impressive. Besides, with desiccated thyroid, you are getting exactly what your own thyroid gives you–T4, T3, T2, T1 and calcitonin. Makes a difference.

Also, this is all about reverse T3: thyroid-rt3.com/backgrou.htm

Hidden
Hidden

First of all I don't need a lecture, thank you, and I am not deaf. For every person that reports good effects on NDT there is one that reports it didn't work for them. If only life was as simple as taking NDT.

I understand what RT3 is and why it happens, I was only asking for other people's experiences following an RT3 test and how they solved it.

roslin
roslin in reply to Hidden

Hi Jan

I have also thought about doing a RT3 test but I am not quite sure what to do with the results. RT3 is made from T4 so I suppose the only way to treat it is by going T3 only. Have you had a look at the RT3 yahoo group?

Roslinxx

I have never had a rT3 test as I can't afford it, however I am convinced rT3 is my issue. I tried NDT and it didn't work for me, although it was much better than levothyroxine. Unfortunately I don't seems to be able to tolerate any amount of t4, whether from synthetic levo or NDT. I have only ever been well on T3 only, firstly when I was initially diagnosed many years ago and again now.

Although I noticed considerable improvement switching from levo to NDT, I didn't feel properly well until switching to t3 only. It may be that, in the future when my body has fully recovered from the years of levo abuse, I can add a little t4 and maybe go to NDT but at the moment I can't tolerate enough to feel well due to (I think) a build-up of rT3.

I think it will take a while on my rather high dose of t3 before I feel completely well. It can take up to three months for the reverse t3 to fully leave the system. Hopefully I will be able to reduce the dose :)

This is just my personal experience. Others may find that the amount of t4 in NDT isn't as troublesome for them and will feel well on it. Unfortunately that hasn't been my experience - yet :)

Carolyn x

Hidden
Hidden in reply to PinkNinja

Is the RT3 test unduly expensive? never even looked to see the cost. I am just searching around at the moment to see what might be getting in the way of progress (if anything). I know there are many other factors that can impact on uptake and have had quite a few of the obvious deficiencies checked out but nothing much has come up as yet.

It just might be Carolyn, that its all going to take rather longer than 4 months for things to work properly again. After all, Phase 2 of my thyroid hell took me a few years to get into although I was completely well during Phase 1 on T4 only.

PinkNinja
PinkNinja in reply to Hidden

It's unduly expensive for me. I am finally working again for the first time in many years in a low paid job (teaching assistant) to get experience before doing my year's on-the-job teacher training. As I am also having to pay for my T3, I don't have any spare cash. I'm not sure how much the test is but I'm sure there is information on the main Thyroid UK website. I will see if I can find it later.

It can take many months to fully recover, even after getting onto the right dose of the right medication. I hope it doesn't take too long for you to get well :)

PinkNinja
PinkNinja in reply to PinkNinja

The reverse T3 test is £62

thyroiduk.org.uk/tuk/testin...

I was quoted around £70 for raw RT3 test plus blood draw and 'consultant GP' fees added to this.[Private BMI hospital]

The ratio of FreeT3 to RT3 is important. I think >20:1 is optimal.

So little gets done routinely on any T3 [cost,difficulty, lack of knowledge and, I think, defensiveness in the NHS] that it's looking the golden grail of treatment options to those unhappy on T4 synthetics.Well, me for one!

PinkNinja
PinkNinja in reply to tegz

I think you hit the nail on the head with the 'defensiveness' comment. The current RoCP guidelines for thyroid treatment smack of 'defensiveness'. They are constantly justifying each guideline. Shame really. I'm sure it would cost the NHS far less in the long run if they tested and treated thyroid disorders properly, on GP visit's and anti-depressant scripts alone! Think of all those poor patients who are borderline and not treated who are back and forth to their GP being referred from pillar to post for this possibility or that, and getting prescribed all sorts of things to see if it might help, all the while gaining weight and cholesterol and blood sugar and blood pressure which also end up being treated....

Sorry, rant over :D

And sorry to Jan too...

Hidden
Hidden

Whether you test or not, unless you have a pretty good idea what the initial cause of the high RT3 IS, then how are you going to keep it low once you go through the process?

Been there, done it, worked pretty much as I had hoped but it clearly came back within a matter of months, (didn't bother retesting, it was obvious enough!) most probably chronic pain in my case, but there are lots of other causes.

Living on T3 only is not an option I would fancy, that would keep RT3 low regardless, but for me this would be a last resort. Fortunately NDT has been fine for me, and generally pretty good, and I have forgotten about trying to manipulate RT3.

tegz
tegz in reply to Hidden

I realise you're settled ok on NDT, but what was the problem with T3 use, Pict?

Hidden
Hidden in reply to tegz

Up and down all day. Never *quite* sure if you are a bit over or under too.

Even 3x daily dosing was not very good, 4x was passably OK, 5 times would be better, but you need to sleep! (I know all about T3 half life, but in practice I found multiple dosing made a LOT of difference to me) Plus, even once forgetting to carry it around is a real problem meaning you need to go home pronto and get it.

OK, it is FAR better than suffering if there is no alternative option, but whilst people can certainly live on T3 only, I am not totally convinced it is the best option for very many people, in the same way that not everyone does great on T4 only and even NDT is not the unioversal answer for all either.

I also worry about things like an accident... what if you were unable to swallow? - are you going to get T3 administered quickly? (That's bad enough worry with Hydrocortisone, but at least it is something that is readily available at all A&Es)

tegz
tegz in reply to Hidden

To update- I've been through one 'cycle' of T3 therapy now and found it reasonable Ok to manage. I got up to 50mcgs daily, which was probably a bit high, and settled out on 40 for some months.

My weight dropped and apart from some oedema in kness and BP surges I felt better on it. I was OK on two doses a day generally. I did titrate carefully and started on 3X 5mcgs dose.

Not wishing to stay on for life [if that option remained on NHS] and wanting to see if RT3 reduced when TSH was zero for some weeks I stopped to take a benchmark FT3, FT4, TSH and RT3 [the last at own cost]. Awaiting results -and restarted T3 already.

Even my NHS consultant failed on getting RT3 done :( but he's not an Endo. [wink wink]

My aim is to test for Wilsons syndrome [temp back to 35.5 am] and also to pursue high hair Arsenic level which can mimic low thyroid.

I'm having to push the whole time, don't we know :(

There is info online about Wilsons Temperature Syndrome, mentioned on here too.

This is NOT 'UAT', rather stress established hormonal response [habitual] -but the treatment is T3 3Xdin small doses [I think7mcg from memory] and ceases after 2 or 3 days and is repeated as needed for success.

Maybe people on T4 &/or T3 have touch of both WTS and UAT and alternating regimes or even a mix may be a way forward to lift base T3 and rekindle essential body hormonal balance over time?

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