I was diagnosed with CFS almost 4 years ago. I have it fairly severe, housebound a lot but not bed bound most of the time.
I used to be a gym manager and trained for natural bodybuilding and powerlifting. I feel this is relevant to mention as I dieted fairly extreme (ketogenically etc) and believe this messed my thyroid up.
So, I have looked into my thyroid and have had numbers back. I am fairly well educated on the subject as I research a lot but need some of you guys opinions and expertise
So my labs are as follows:
TSH 3.47
T4 17
T3 6.0
Now I know the only concerning figure on the surface is TSH perhaps, and only mildly.
Yet with CFS I cannot exercise or even socialise because of the severity of the fatigue and brain fog. This is where its gets interesting.
I have spoke to my Dr (UK CFS, ) who I'm sure you guys have heard of, and agreed on a T3/ Armour Thyroid trial.
I started myself on a low dose 30mg if Armour and the results have been remarkable by my standards.
I literally feel like I have 'liquid energy' running through me. On a subtle level.
Now it has only been 2 days, and this happened within 2 hours of the 30mg a day capsule, which from what I have read is unusual. Any ideas?
Also it was suspected I may have rt3 issues hence the normal ft3 yet all the hypothyroid symptoms. Is my reaction to Armour again more proof of this?
Nothing has worked for me in 4 years and with my history of dieting and seeming evidence it can screw up your rt3 this makes sense to me.
But I don't want to get excited if this is a usual/honeymoon effect so to speak. Any thoughts would be really welcome.
I have all other symptoms of hypothyroid such as low resting pulse (55bpm now, it was 65bpm at rest when I used to train!!)
Hair loss, low libido, extreme fatigue obviously, and low body temperature. Completely unrefreshing/restorative sleep for 4 years.
Thanks guys,
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kinoble
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All of the tests you mentioned were in reference range on the NHS.
My actual test results are posted below:
Free T3 - 6.0 pmol/L (3.1 – 6.8)
Free T4 - 17.6 pmol/L (12.0 – 22.0)
TSH - 3.47 mIU/L (0.27 – 4.2)
Hope that helps. It's mainly the almost instantly reaction I'm having and I know usually it's between 2-6weeks for clinical effect....or so people say.
However perhaps if it is the rt3 that is the issue, that is why...
Yes I do appreciate that your results of the above mentioned tests were in range - but WHERE in the range is important. B12 needs to be around 900 - VitD at the top of the range too - Folate mid range - Ferritin - 80/90. When these things are LOW in the range you will it difficult for any medication to be effective.
I think the Test for rT4 is not available on the NHS. Sorry not aware of the rT3 test - happy to learn new things though
..of course. Glad your levels are so good. Was trying to respond to the symptoms you are still coping with. Sorry do not have experience with Armour. Someone with more knowledge will be along soon ! I am T3 only....
I can believe that you felt a change so quickly and believe it is because Armour contains T3. T3 is the active thyroid hormone required by every single receptor cell in our bodies but of course you have to get to an optimum dose.
There is a possibility that because your TSH never rose high enough to be diagnosed as hypo but were suffering clinical symptoms which was named CFS. As far as I understand, CFS was only named about ten years after the introduction of blood tests and the diagnosis by TSH only.
This is an excerpt from a website by a now deceased doctor (hounded by the GMC) due to prescribing thyroid hormones for patients who had clinical symptoms and recovered their health:-
His research has also extended to the clinical arena. Some fifteen years ago he was asked by colleagues to see patients who were considered to have myalgic encephalopathy or chronic fatigue syndrome or post viral syndrome or post viral fatigue on account of his interest in virus disease. He noted that a number of these patients had clinical features of hypothyroidism but had ‘normal’ levels of thyroid hormones which would lead most workers in the field to reject a diagnosis of hypothyroidism. Dr Skinner has since treated and returned to health many patients who were clinically hypothyroid but had normal thyroid chemistry and has reported these results in a preliminary paper entitled “Clinical response to thyroxine sodium in clinically hypothyroid but biochemically euthyroid patients”. He is disappointed that many doctors have little enthusiasm or will to examine this critical shortfall in patient care which in part motivated his book “Diagnosis and Management of Hypothyroidism”.
And yes CFS is utterly a wastebucket diagnosis and a poor name, but that's for a different discussion
I will check out the links, thankyou.I guess it was just the speed of a reaction that caught my attention. I deliberately started on 30mg which I know is pretty low (half a grain) but still, interesting.
I guess because I didn't have an rt3 test done (obviously not available on the NHS) I am not sure what my levels were.
I will be getting bloods monitored but I'm guessing currently.it's down to 2 reasons- TSH level dropping (impossible in 2 days from what I have read) or more likely T3 having an effect.
Don't get me wrong-im not up and going to the gym again, however to feel an effect and not feel.absolutely horrific from.a small dose of armour is incredible.
Kinoble, it is unusual to have such a positive effect so quickly but it may be due to the 4.5mcg T3 in 30mg Armour. Your results are unusual, it's not common to see raised TSH with high FT3.
rT3 is tricky. It's usually caused by a build up of unconverted thyroxine. I think it's rare, but not impossible, to have high rT3 if you haven't been taking thyroxine. You can order a blood test to measure rT3 and FT3:rT3 ratio via Genova or BlueHorizon thyroiduk.org.uk/tuk/testin... If rT3 is high the thyroxine in Armour may increase it and it may be better to take T3 only until rT3 drops.
Thanks for the info. I agree the test results are unusual somewhat.
I am booking an appt with my Dr to see if just T3 would be better for the exact reasons you specified. It came about from me feeling utterly terrible and deciding to try a small dose of armour which I had ordered a couple months before. My Dr had mentioned Armour or T3 as possible trial options.
Kinoble, Stick with Armour as long as you feel good on it. Pointless to switch because of an unconfirmed suspicion about rT3. If you had rT3 I doubt you'll have felt the positive effect you experienced.
Kinoble, I think it's likely you are having a quick and positive response to the T3 in Armour. A little exogenous T3 can stimulate better natural T4 to T3 conversion.
Your doctor is thinking outside of the box and not hidebound by thyroid protocols. Don't lose him
Is it possible this was THE main issue all along? I mean it has wrecked my life for the last 4 years...can a lack of t3 (or active t3) really be that debilitating?
My only concern is that Armour contains t4 as well and if I'm not converting to t3 then it may make the issue worse (from research I have read today).
But then again, currently the armour is doing something. I know there is a fair bit of trial and error but making things worse potentially would not be great.
Its Dr Myhill is you have heard if her. Hounded by the GMC for thinking outside the box..like all good functional medicine Dr's it seems.
Thanks for the clarification. That's reassuring! I read that someone had their rt3 increase after being out on armour so it worried me a little and wondering if T3 would be better (thus the t4 from armour wouldnt be converted to rt3 if thats the issue.) Trial and error I guess.
Thanks to you and everyone for being so helpful. And so responsive. It's a massive help.
Kinoble, it does happen but the person will generally have been on high dose Levothyroxine or high dose NDT where the thyroxine hasn't converted. I really don't think you need to worry about rT3 if you weren't previously taking thyroid meds and based on the positive effect you've had from Armour.
So based on my lab results and response to Armour is it fair to say that i probably have an issue with t3? I.E. either not converting well as oppose to TSH that has contributed to this extreme fatigue?
I'm just thinking out loud as to what tests I should order. To be fair my Dr will help with this but I do like trying to be as informed as possible, especially from people who have had first hand experience.
Kinoble, FT3 6 is near the top of most ranges and doesn't indicate a conversion issue. Your high TSH is stimulating very good T4 to T3 conversion. Low TSH + high FT4 + low FT3 indicate poor conversion.
Thanks for the info. I did read the ft3 reading includes rt3 aswell so can still be low ft3 functionally but in labs its high because the rt3 makes up for it? Maybe I am mistaken!
What's your take on my experience of I may ask then I.E. what might be wrong with my thyroid?
I feel like I am hypothyroid and clearly responding but my labs suggest not...at least at base level.
I have read about rt3 dominance....which someone who had almost identical labs had to me and same symptoms and that was offered as an explanation.
Total Free T3(FT3) measurement measures T3 and rT3 combined.
So it is not referring to the Free T3 test.
The link below appears (if I have understood it correctly) to recommend a low cross-reactivity for rT3 precisely because inability to distinguish makes the test towards meaningless.
Moderators can be just as wrong as endos! I'd appreciate if anyone has definitive information. (Mind, these things might vary depending on the manufacturer of the test.)
Hmm I'm a tad confused! You are right with the quote, what it seemed.to my (brain fogged) mind was that my ft3 is 6.0, but seeing as that includes rt3 it could mean my ft3 is actually 0.5 and the rt3 5.5 which would still be a result if 6.0 and in range, but really not good!
Hence why rt3, must be measured.
He refers to total free T3 as ft3 so I thought they were the same...
Doesn't make sense in my book! Using the phrase "Total Free T3" is simply ridiculous because of its confusion-causing capacity.
Ranges of several tests grabbed from a random USA lab:
T3 Total - ng/ml (0.58 - 1.59)
T3 Free - pg/ml (1.7 - 3.7)
T4 Free - ng/dL (0.70 - 1.48)
Reverse T3 - pg/ml (90 - 350)
So the range of numeric values of RT3 is massively greater than that of Free T3 - and approaching that of Total T3. If RT3 were simply added to FT3, then the result would show vast numbers of people with FT3 way beyond top of range.
Very true. Not sure what he means now.....and I thought it was such an eloquent reply
So I'm now wondering in the UK if ft3 includes rt3 or not. Judging by US levels I guess not. Wonder what was meant by that as even if his terminology was wrong, what he is implying seems to be that you can have normal ft3 and rt3 skyhigh thus making you hypothyroid, or at least symptomatic...
Further, no-one ever seems to discuss the possibility that RT3 probably also exists in both bound and unbound states - just like regular T3. I'd guess that what is measured is really Total RT3.
If you can measure RT3 without suggesting that the result includes regular T3, why does he suggest that a T3 result includes RT3? That is, the existence of the RT3 test means that they CAN distinguish between T3 and RT3 (at least in some tests).
I've never understood this idea that FT3 somehow includes rT3 as well. I'm sure I've posted this before, but kinoble won't have seen this info before so I'll post it again.
The last time I had both FT3 and rT3 measured in the same set of tests the reference ranges and units were :
FT3 : 2.8 - 6.5 pmol/L
rT3 : 0.14 - 0.54 pmol/mL
Imagine someone gets results which are exactly mid-range in each test i.e.
FT3 : 4.65 pmol/L
rT3 : 0.34 pmol/mL
To convert both test results to the same units for comparison the rT3 must be multiplied by 1000, so the results being compared now are :
FT3 : 4.65 pmol/L
rT3 : 340 pmol/L
So there is approximately 73 times as much rT3 as there is Free T3 when someone has levels of each which are exactly mid-range.
So to my mind the idea that the FT3 measurement somehow hides the rT3 within it doesn't make sense - unless you have a Tardis perhaps.
If the argument is "Total T3 contains both Free T3 and Reverse T3", then I'd be convinced. But people almost never seem to say that - they almost always say the rT3 is included in the Free T3, which is nonsense as far as I'm concerned.
I have read some people saying something similar to "Your high FT3 and your continuing hypo symptoms suggest that your FT3 is mostly made up of Reverse T3" - or words to that effect.
To me personally, it makes no sense, because of the reasons I gave earlier - the amount of reverse T3 made is far in excess of the amount of Free T3 made, so how can the larger amount be contained within the smaller amount?
As for Wilson's Temperature Syndrome, I have no opinion, sorry. I know it is not accepted in the mainstream, but then lots of things aren't so that isn't a particularly damning thing to say.
If I've understood the theory properly, it is one of those ideas where it is difficult to know which came first - chicken or egg. Did basal temperature drop first and then Wilson's Temperature Syndrome developed? Or did hypothyroidism symptoms develop first thus causing basal temperatures to drop?
Unless someone developed a large and expensive experiment which went on for 20 years with lots of monitoring of temperature and symptoms, so that people could be followed up to identify who got which condition(s), and what their basal temperature was, I don't think this question could be answered very easily.
I'm not sure.specifically what you mean but I did say above when Clutter replied that the rt3 didn't make.sense.anymore. I was.just reading from an endos reply (link above) who I think.phrased.it.wrong.
So.apologies.if.I confused.things.
It's definitely plateud for.me, so not.sure what to.do.from.now
I think the issue for me.is either my the (which has been 3.4 and higher before) is the problem.or more likely my t3 I am making is not being used by the cells so well. Dr Myhill called it T3 receptor resistance I believe.
The T3 receptor.resistance has been likened to.insulin resistance by Dr Myhill in terms.of physiology. There may be a chemical, toxic.stress.involved blocking.the receptors uptake. I believe there was.something.published.in the Oxford.medical.journal.about this but do.not have the link.to hand
The idea.is though normal.tests results may mean jack as we.can make/convert as much t3 as we.like.but if it's not getting into.cells....
Yea I agree the Ft3 is a bit of a.misnomer. Though from what i can tell That.would still.not matter if the ratio.was high/rt3 was high too.
Again it's pure speculation. I don't know is.wrong unfortunately, but I also Know that medicine.does.not have all the answers in writing yet. This cellular hypothyroidism may be one of them.
I still have the lasting benefit I did, but the 'instant feeling' wore.off after a few days. So.I believe it is helping, but not as dramatically.
So, do.I follow guidelines and raise the dose from 30mg to 45mg of Armour?
Or wait? I would have raised already as the say 2 weeks but I wanted to be sensible. I'm having a blood test for rt3 next week.
Thoughts would.be helpful.
The thing I'm.concerned.about is my tsh dropping too quickly or becoming suppressed (a long way off I would.imagine due to it seemingly taking longer than 2 weeks to.drop, by all accounts 6-8weeks when you have reached the right dose).
Secondly is my t3 due to it being in range and high already (6.0/6.8).
Again I realise that I may.not typically hypothyroid based on bloods for those of you wondering, though I am hugely by symptoms and my specialist believes rt3 may be the cause. I'm can't see her till October Though!
I am no expert but I do believe that, aside from possibly being ready to go up again (I take you are looking at STTM also) while you are adjusting, don't be tempted to push yourself to see if you can find that energy again and try to make it rise to your needs. It is not good for your body and can damage mitochondria and muscle tissue. I'm probably talking suck eggs Until you make a decision or get advice on your next dose ( I self-dose and what works for me might not for another) I would echo not to worry about rt3 and suppressed TSH, overly. How you feel is more important. There is also a forum for NDT and T3 users only on fb and in Yahoo groups. What I like about this forum is that it is very egalitarian and a host of help floods in from admin as well as other members.
I have not read all the posts but I was diagnosed with FMS/CFS for 18 months before thyroid ranges went slightly out. I won't go into why that can happen cos you and most everyone else on this thread will be up on it. I also had a very fast reaction to NDT. Within less than two weeks I had energy. I could of cried as I had forgotten what that was like and I was housebound most of the time with a massive list of symptoms. My journey towards functional was winding as I was titrating up (and down again) and all those other reasons it's a two step forward one back, but I got here. I am delighted to read you are being trialled with thyroid hormone. The best of luck and don't boom and bust with that new energy in the bank
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