I hope there's a prize for this somewhere- but my [privately sourced] figure for RevT3 was as I feared -when it came without the range attached. It's 31.5 ug/L.No idea why they switch to US units for some tests- must be advanced machines for over here still So,that's 90X over top limit !!! - and I still feel better than when on Levo, as if we need be told. [The range is 0.09 - 0.35, btw].
Whether this is an anomaly remains to be seen but I thought it may flag some comment.
I see Endo No3 [still digging around] next week, but already know he's been dismissive over Wilsons, RT3 etc. even though on the 'helpful list'.
At least he was way out with the Cushings query as ,like I thought the days Cortisol output was actually pretty low so unless I can get Adrenal help and then some T3 I'm stuffed with the NHS..
There is a T4+T3 [4:1] mentioned somewhere -but it could be the US that use it.
I've seen good arguments for not neglecting T4 whilst on synthetic T3.
As a vegetarian I'm not keen to use NDT, tbh. Will have to see what is offered, if anything.
There may be other reasons for high RT3 -like serious illness running obscured, but I'm still kicking!
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I find that reverse T3 result to be so off the scale that I simply don't believe it. I wonder if someone converted from one set of units to another and made a mistake? I would contact the company that did the testing and ask if they had ever had a result even close to that before - ever - from anyone at all! If they haven't then I would suspect a mistake. And in that case the company should do another test for you for free, in my opinion.
Me too- but they took nearly two weeks -andbloods were taken by a private clinic doing all the right moves, afaik!
RT3 is not done during illness or trauma as this can drive the reading up, I do know.
I contacted the lab to ask about ranges [when they weren't passed on initially] and they refused to tell me -even though I knew thwe actual figure and was paying for it!
Typical of todays box tickers and they didn't even let on they couldn't do the RBC Magnesium test either and substituted another not needed. I already have the bill too!
From that I doubt they'll do bugger all free- and the Hospital concerned will want to protect their position as always happens.Some of the tests were subbed to Genova anyway- so in future I will try Biolab who take bloods in Oxford privately.
So was it Genova who screwed up? I'm confused! If you've found an unhelpful lab I think people would like to know about it.
I've had my RT3 done by Genova twice, and each time the waiting time for results was nearly two weeks and that is because the blood for the rT3 test is processed in some way in the UK and is then sent off to the US for testing.
The first time I had rT3 measured it was 0.72 (0.14 - 0.54) pmol/mL. I did a web search to see if I could find anyone who quoted their rT3 results and I only found one person quoting results higher than mine - theirs was about three times what mine was and they sounded as though they were bedridden and very ill indeed.
I started treating myself with T3 only to try and reduce the rT3 and for a couple of months I was extraordinarily unresponsive to the stuff. I rapidly went up in dose, and took as much as 200mcg for a few days, but spent most of the time taking 150mcg per day. I then went hyper and cut down and eventually stopped taking the T3 altogether. I've never been able to tolerate high doses ever since.
My next rT3 test, done about three months after stopping the very high doses of T3, was 0.35 (0.14 - 0.54) pmol/mL. So it was almost exactly mid-range. I felt a lot better for it too.
The main lab wasn't Genova but they appeared to be indicated bt referral 900 as they do the tests where others don't here.
This was for RT3,Iodine,Selenium and Magnesium. 3 high and one lowish [Mag] but the wrong sample type.
At present I'm treating the result as valid and passed it on th GP and maybe Endo for next week. It's at least out there now to discus and can't be ignored.
If 2 decimal points out- it's still near top of the range, anyway!
I can't think they would not retest and recheck this somehow, really!
it will hopefully be done again now at the NHS cost- I spent over £500 on these tests and over 300 last year. What a blooming struggle -and well below par to boot... educating pricey medics to do their job.
As there is no recognition of reverse T3 in the UK, I doubt that any tests have been established with the UK in mind. Indeed, I thought that at one time RT3 tests were actually sent to the USA?
Bizarrely, I have just seen a new paper by our "friend" Weetman, AP in which he actually mentions rT3. (Actually, two typos within about 10 characters mean gets the name wrong and the abbreviation - calling it T3.) That has the context of people with HIV in whom (apparently) rT3 is low with "normal" free T3.
How anyone would ever know that when they rarely get tested for FT3, are effectively never tested for rT3, I can't tell you! Could Weetman have decided there is more to thyroid than TSH?
I read recently that HIV cases present with HIGH RT3 commonly. This would make sense to me, as RT3 can be high in any illness, already -but this seemed specific to HIV & thus contrary to your link above.
I have two similar readings taken for FT3 from local hospitals after GP was refused. One via an Endo and the other private in this recent test. ~ 5.0pmol/l -1/3 up the scale, so hardly optimal.
The RT3 being high would explain a lot.I'm puzzled as to whyI don't feel worse- but I have fought back do 5 to 20+ miles hiking every week, resting and staying positive.
One thing that has kept me going is places like Thyroid uk -where I can feel less alone and help others, where possible.
The bottom line is this- Doctors have taken the right for people to self medicate with licensed drugs and are legally obligated to treat where indicated. If the patient requests a treatment and it is refused they are legally liable, whatever the backup from the state that empowers their decisions.
If a move was made to stop private imports of meds ,say for thyroid, the lid would come off the bubbling pot at last -which is why it is allowed to continue. They would have to provide, even on private script what was best for the patient.
Putting things in writing and pushing for right treatment is not our way in this society but patients are tiring of watching their very lives slip down the tube- while richly paid medics pronounce on our sanity etc.
Whatever- I would still prefer to find an holistic solution as HC is just as flaky to trial as Levo, it appears, from some comments here and there.
I will update with my follow up Endo appt. next week.
My guess- he will be obliged to repeat T3/RT3 [the former not suppled by his own lab] last time!
Also, I intend to pursue 24Hr Cortisol saliva check and already have info on DrD-P to follow up, as a backup plan.
My cortisol 24hr saliva was above average, but not terrible. The evening one was still double what it should be. I was worried more that adrenals would be low function- which would make T3 therapy more difficult according to the word on this. The high evening cortisol would go with my broken sleep pattern though so at least I don't need to worry about low cortisol triggering adrenalin reaction in the night, as can happen per Paul Robinson.
I've been on T3 about 2 months now and just starting to make progress on an increasing dose- up to 35mcg now, split 3 or 4 times in the day, clear of food.
I haven't been given an upper limit though I earler suggested 40. i think I will go past this, but carefully so. I have seen reports of 4 times this dose in a young male, but results still weren't forthcoming there.
Due to lack of guidance and the cost of RT3 tests I've decided to head for the initial target of FT3 >5.5 and see if I feel better there as RT3 hopefully drops.
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