My (utterly pathetic) private endo took 25 mins at £10 per min to diagnose me with CFS this week. I’d already been offered this diagnosis by my equally incompetent GP around 3 years ago. They call it a ‘diagnosis of exclusion’, in other words, they don’t know and if it’s not depression, it must be CFS, or menopause. It’s not menopause, oestrogen makes me I’ll every time I try it, and it’s not depression. Im done with these idiots telling me to ‘pace myself’.
Anyway, I’ve been Googling obviously, and have come across a few articles regarding CFS and RT3 being commonly seen together. Some recommended T3 treatment and some have good outcomes with it.
I haven’t tested RT3, and not sure if I should. Would my current thyroid tests reveal this problem or is it entirely separate?
Any help appreciated.
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Jamima
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If FT4 and FT3 are tested together, and FT4 is very high and FT3 very - i.e. a conversion problem - then you will have high rT3, that's for sure. BUT high rT3 will be the result of the problem, not the cause, and the low FT3 will cause CFS-like symptoms. T3 is the active hormone (rT3 is inert) and too much or too little T3 causes symptoms. The solution - if you cannot find out why you have poor conversion and correct it - is to add T3 to a reduced dose of levo.
Testing rT3 does not give you any further information, and will possibly confuse things further. Because you could have high rT3 without having high FT4, because high rT3 can be caused by many, many things that have nothing to do with thyroid - infections, for example, low calorie diets, high cortisol, etc. etc. etc. So an rT3 test will show you IF you have high rT3, but it won't tell you why.
Excess rT3 is cerainly not the cause of CFS, possibly the other way round. rT3 itself is not any sort of a problem, it is the result of a probelm elsewhere. So, no, really no point in testing it.
Thank you Greygoose, you're making sense but my brain is not yet up to speed! I suppose my query more specifically, relates to my own results - low/normal FT4 and FT3 along with low TSH which I think points to central hypo, the treatment for which is levo, T3 is specifically excluded, BUT, if I do have high RT3 would it then indicate that T3 would be a better treatment?
No, it doesn't. If your FT4 is low normal, then your high rT3 has nothing to do with thyroid. There's some other cause.
These are some of the causes of high rT3:
* Chronic fatigue
* Acute illness and injury
* Chronic disease
* Increased cortisol (stress)
* Low cortisol (adrenal fatigue)
* Low iron
* Lyme disease
* Chronic inflammation
* Selenium deficiency
* Excess physical, mental and environmental stresses
* Beta-blocker long-term use such as propranolol, metoprolol, etc.
* Physical injury is a common cause of increased RT3
* Viruses, such as flu
* Starvation/severe calorie restriction
* Mistreated diabetes
* Cirrhosis of the liver
* Fatty liver disease
* Renal Failure.
* Fever of unknown cause
* Detoxing high heavy metals levels
* Etc. etc. etc.
Who said that T3 is specifically excluded in Central Hypo? It's treated the same as any other cause of hypothyroidism. So, if you're a poor converter then you need T3 whether it's Central Hypo, Hashi's or whatever.
Ok, so extrapolating that further, if it is CFS that I have, is there any way of distinguishing this from central hypo? They seem to cross over on many levels, and tbh, I don't give a toss what it's called, I just want to treat it with something a little more robust than graded excercise.
I'll try to find the papers which indicated levo for central hypo.
Well, CFS is a syndrome, not a disease. A syndrome is a bunch of symptoms, and symptoms have to be caused by something. And, having looked back through your previous posts, I'm pretty sure that your symptoms are caused by your low T3. Including your depression. You do need treatment. Doctors can be so stupid at times!
So, when you took levo for a week, was that prescribed? Or were you self treating? Such a shame you stopped it. There are some people that just don't get on with T4 - like me - but one week is not enough to tell if you're one of those people. You have to give it a fair trial. I can't imagine any doctor is going to diagnose you and put you straight on T3 only - for a start, they disapprove of T3 only for anybody, but certainly not straight after diagnosis. If that's what you want to try - and I wouldn't blame you if you did - you'd have to self-treat and buy your own, I'm afraid.
Thank you greygoose. When I last trialled levo, I was also using a very low dose hrt. I now know by trialling hrt independently, that it causes me a lot of problems because I think it's interfering with my thyroid metabolism, in fact I know it is, I can feel it, and I don't need that. I'm going to re-start the levo entirely on its own, give it a month and re-test. Hopefully some strings of the puzzle will unravel then.
Who said it was a diagnosis? It's just a list of possible causes of excess rT3. And, just because doctors don't recognise it doesn't mean it doesn't exist. Anyway, I didn't write the list, I copied it from somewhere else.
That said, I was diagnosed with adrenal fatigue - by a doctor who had it himself - he used those very words. My cortisol was very low, but not low enough to be Addison's. And, if you start talking about 'adrenal insufficiency' on here, when you actually mean adrenal fatigue, a lot of people will start shouting at you! lol Adrenal Insufficiency, on here, is taken to be Addison's.
I didn’t say it doesn’t exist in my opinion (I don’t know enough to judge). I was saying that it isn’t a medical diagnosis. So in other words, a lot of doctors may dismiss someone who says adrenal fatigue is causing rT3.
But I know for sure that not all cases of adrenal insufficiency are Addison’s. Sometimes it’s caused by the pituitary, for example.
Yes, I do know that pituitary problems can cause adrenal insufficiency. What I don't understand is why you felt it necessary to comment at all. I can't imagine anyone reading that list rushing to their doctor to complain that adrenal fatigue is causing excess rT3, that wasn't why I posted it. And, they would probably be asked what rT3 was. How many doctors know anything about rT3? Most of them don't even know what normal T3 is. What I wrote in that response was just a reply explaining to the OP why testing rT3 isn't worth it because it doesn't give you any useful information. The fact that doctors won't diagnose you with adrenal fatigue is neither here nor there. And really not worth mentioning. I am perplexed. 🤔
RT3 is commonly raised in CFS (and other illness) and would certainly be a contributory reason for feeling hypo symptoms.
Testing RT3 is discouraged by many forum members because it is expensive and unable to indicate reasoning why RT3 should be raised. It can also be difficult to interpret because it isn’t the actual RT3 but the mechanisms driving it that is damaging.
However, it can a useful tool for assessing the depth of (own or exogenous) thyroid hormones involvement regarding symptoms, and give a goal to work towards as biochemistry often improves long before improvements of lagging symptoms.
Thank you Radd. It is expensive, but so are endos at £10 a min who forward you to a CFS clinic for 'controlled exercise regimes.' I'm trying to work out if I should just re-start levo at 50 dose and put up with feeling awful for at least a month to determine if it will eventually work out or, if I should have this test and if RT3 is high, pursue T3 treatment.
They used to say medicate T3 to clear excess RT3 but that is old thinking now as the known mechanism that drives T4 to RT3 concurrently drives T3 to inactive form T2.
Your previous FT3 was low but there’s no way of knowing if that was the result of poor conversion, or actual poor T4 levels or up-regulated conversion of RT3 (ie you have enough ‘total’ T4 as indicated by your TSH but it’s being converted to an inactive forms).
If I were you I would save the RT3 test money to spend on private TFT’s and buying/medicating Levo whilst ensuring essential cofactors are optimised to encourage better T4 - T3 conversion. Then if FT3 levels were to remain low after several months of optimising T4 levels you could add a little T3 or NDT to help raise them. I wouldn't recommend T3 meds too early if you are still suffering those adrenaline surges.
You said you also have low sex hormones and this is often linked to low thyroid and adrenal reserves. Have you enquired about HRT from your GP as this will help thyroid hormones work better.
You also said you were suffering insulin resistance. Are you following a protocol to reverse this as thyroid hormones require balanced glucose levels for better cell uptake?
Have you other issues that you are addressing? ie gut issues/food intolerances, elevated inflammation, infections, etc?
All these issues can be caused by low thyroid hormone and ironically effect further thyroid hormones negatively so you will need a whole package for effective utilisation of thyroid hormone or you chance further being converted to inactive RT3.
Thank you Radd. I sourced some levo a few months ago and gave it a short trial alongside low dose hrt. I felt truly awful, so stopped after a week. I now know that I just can't tolerate hrt at the moment, I've trialled it independently and it always makes me feel more hypo. I can tolerate very small 10-20mg of topical progesterone so I may consider that again. The hrt results indicate to me that its a thyroid problem and therefor I've decided to re-trial the levo at 50 dose with nothing else to muddy the picture. I'm now dairy and wheat free although I understand my levo contains lactose but I'll just have to learn how to tolerate that. I'm trying to manage my glucose issues by keeping carbs low at mealtimes, I've noticed a difference doing that, but it's not easy, I love rice and rice noodles! Last time I tested b12, d and ferritin they were all good and I'll continue to supplement these.
Thank you for your support, it's much appreciated.
I'm trying to work out why 50mcg Levo previously made you feel so bad. Except for adrenal issues (ie altered heart beats, spaciness, etc), generally initial Levo replacement is felt as positive, and it is only later that Levo ramifications will show if for instance conversion abilities are impaired or iron levels are inadequate. Therefore, it may not be a good idea to take Levo until more of your problems are realised as you don't want to be adding fuel to a fire. How exactly did it make you feel?
Have you had a DUTCH? If you have Central Hypothyroidism, then others pituitary hormones could be messed up including sex hormones and usage of cortisol, etc..
Have you ever had the 'totals' measured, TT4 & TT3?
'Totals' are not generally useful because we know our approximate levels through medication and only the 'frees' can become active, but you are not medicating. You are relying on the amounts your body is making so given you have a (presumably) skewed TSH so levels are not indicative, it could be useful in knowing if you are making enough thyroid hormone.
If 'totals' were low the treatment would be replacement meds, ie Levo. If 'totals' were adequate you would be looking at supplements to reduce binding hormones such as TBG & SHBG and encourage conversion of the 'frees'. These binding transporter proteins become elevated when other hormones imbalances occur and this is where the HRT would be come in together with tailored supplements.
Yes, if you read helvella 's Vade Mecum 😁, a useful referential handbook/manual/object that is constantly carried about one’s person you will note DUTCH stands for "Dried Urine Test for Comprehensive Hormones’.
Through certain measurements of hormones (thyroid, oestrogen. cortisol & metabolites, etc) a good practitioner is able to evaluate uptake, usage , excretion, etc.
I suffered long term & huge hormonal imbalances and benefited from this test tenfold. As the O/P Jamima also appears to have a complex medical state unable to even to tolerate HRT or additional thyroid hormone this test might be of benefit to her.
Thank you Radd. The levo made me feel incredibly tired and somewhat foggy. I’m only on day 2 and it’s doing the same again. Terrible day today, slept for 3 hours this afternoon. I haven’t had a DUTCH test but I’m wondering if I ought to try NDT instead of levo?
Can I just jump in here and give you my experience.
Before I knew better (and learned so much from this forum) I tested rT3.
First time was in 2001 when I was seeing one of the eminent private doctors. I was advised to leave my 3 grains Armour off for 48 hours (yes the private doctor and lab did suggest that!) and the results came back with FT4 of 45% through range, FT3 of 19% through rang and rT3 at 19 (15-35) so the rT3 was a pretty good result.
As I didn't do well on NDT I went back on Levo for many years and then decided in earnest in 2015 that I must sort myself out or what's left of my life would probably be even more miserable that it was. I did a raft of tests before seeing a private practioner, including rT3 again.
Blood test showed poor conversion with FT4 at 165% to produce only 55% FT3. This was backed up with a urine test which showed FT4 39% through range and FT3 below range.
I added some T3 to my Levo.
Tested rT3 again some while later and it was 22 (10.0-24.0) so it was higher when T3 was added to my Levo, ratio of Levo to T3 at that time was the same as NDT at 4:1.
6 months later I tested again and had increased my T3 slightly as I still wasn't well. This time my rT3 was 29 (10.0-24.0) with FT4 at 36% and FT3 at 75% so taking more T3 didn't reduce my rT3, something had made it even higher but it was obviously not an excess of unconverted T4. But testing can't tell you what.
By the way, the private practioner was rubbish, I ditched her and followed advice from the forum. My FT4 and FT3 are pretty much settled (I seem to need them both fairly well balanced over half way through range) and a ratio of Levo to T3 of 9:1 seems to be about right for me at the moment.
I wouldn't waste money on rT3 testing again because if it comes back high it just can't tell you why.
Thank you SeasideSusie - that's very interesting. I've decided to trial levo again, without using anything other than vits alongside. I'll hopefully get a picture of what's going on in terms of my t4/t3 ratios after a trial. I'm desperately disappointed in the medics I've seen so far, so concur with your evaluation. There must be so many people (mostly women it seems) out there with very low quality of life because they're mis-diagnosed, truly appalling.
My plan is to report back here after a 6 week trial and re-test. Thank you for your support.
I thought after much controversy and campaigning by CFS advocates and charities, that graded exercise was no longer to be prescribed by the NHS , as in many cases it can worsen patients, not make them better.
It's never been accepted by those in the know as useful or beneficial. I've always suspected that it's a case of being seen to be doing something because medics have very little idea about what causes CFS, let alone how to treat it.
I have Fibro, which shares many features with CFS, they've never effectively treated that either. It's a dustbin diagnosis, frankly. Getting my thyroid treated finally, after years of strongly suspecting it wasn't working properly has helped far more than years of painkillers antidepressants and sleeping pills ever did. I wish you luck.
Thank you Sparklingsunshine - that's my conclusion too - a dustbin diagnosis or as the private endo calls it 'a diagnosis of exclusion'. I'm very much of the opinion that system failures cause disease, not vague, wafty syndromes. You may see that I've decided to trial levo again, I hope after 6 weeks that I'll see a clearer picture of something!
I'm still at the start of getting a possible underactive thyroid diagnosis.
My thinking if I get offered Levo (although I don't have a known heart condition) I will probably start at 25 dose. I know that it replaces and doesn't top up your thyroid levels but I believe I've had hypothyroidism since a teenager.
Would that work for you? Start at the low dose or even split the dose so hopefully making it easier for your body to tolerate?
Obviously those on the forum with much knowledge and experience will be able to guide you as to whether that's a good idea or not? I've read on the forum about other members splitting their doses in this way.
I've found taking Levo all at once doesn't suit me, so I take half on waking up, half on going to bed. I've only been doing it for a few days, before that I tried very early morning, around 3am, then early afternoon. But I found timing meals, hot drinks and other meds was problematic that way. Its too soon to tell for me but bedtime dosing is believed to increase effectiveness.
Thank you Hedgeree - I had considered starting at 25 dose but I've read a few posts where it actually makes people feel worse! I'm going all in, just can't live like this anymore, I've lost almost 4 years of my life 2 where I barely left the house, although lockdowns had some part to play in that. I've had enough, and the lunatic endo who's happy to dose herself up on various hormones and rob me of £250 for a 25 min chat, sealed the deal - I'm self medicating. I'll re-test in 6 weeks and will report back. Thank you for your suggestions.
Yes I can understand that feeling....I've lost so much time to feeling unwell, much of it spent lying down feeling nauseous and family and friends thinking I'm just being lazy.
I meant to ask did you get your Synacthen test results yet?
Hello Hedgeree - yes, they arrived yesterday - baseline 342 rising to 686 so they're 'robustly normal' according to the NHS gynaecologist. I must say, I don't feel anything like robustly normal.
Unless you are elderly or have a heart condition, 50mcg is the usual starting dose, with 25mcg increments every 6-8 weeks until symptoms abate.
That said though some are very sensitive to thyroid hormones and may have to build up much more slowly. Some members use 12.5mcg increases or even 6.25mcg. It's very individual.
Thank you DippyDame - I'm only on day 2 of 50 levo, not feeling great at all. I think your link to low FT3 was the article I found and made me curious. Like you say, CFS is just a collection of symptoms which also crossover a collection of symptoms for other illnesses! Yes, the private endo said that she had low frees like me and felt awful but then her tsh shot up and she started treatment, my tsh has always remained between 1 -1.8 at the very highest over 4 years, no sign of upward trajectory which I think would be apparent by now.
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