I have been seeing a Private Specialist in North London, he has done rT3 and cortisol bloods, adrenal saliva, and urine T3 T4.
Reverse T3 was the only outlier (0.61pmol/lml - with bounds 0.14 to 0.52), and was given two options, ideal option in his eyes was Supplements (as above) or second option T3.
i chose 1st option as im travelling and working abroad for a few months and wouldn't be able to monitor my t3 levels as easily. - but they cost well over 100 pound a month...so cant keep this up for life!!!!
Has anyone had any success getting their reverse T3 down? if so how long? if so what dose?
if not, did you have to then go onto t3 and did that work?
Thanks in advance!
History:-
Im 27 year old male
Diagnosed hypothyroid 2009, but was ill with symptoms many years before this.
Had Encephalitis aged 15 - so hypothyroid isnt nessisairily only cause of symptoms!
weight goes up and down by 20kg as GP keeps changing dose of T4..
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hypoDan
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hi Hypodan I too have been using a private clinician using the Nutriwest products you are using? Once she got my body chemistry right I was able to go back to my Doctor and get my levo dose right which Ruth them checked against her machine. Balancing it with just one or two Nutriwest products. The initial cost was high but now it is just a 2 month visit and only costs around £15 per month. Are you seeing a GP at all????
My clinician uses a Kinetic machine. Some people do not rate them, but they have worked for me over the years. She tests all the chemistry in the body and then using the machine sets about looking to see what will balance with each other to bring any chemistry back in line. For Example: I was getting terrible pains in my legs after exercise (could hardly complete 1 game of golf) Doctor said "that she had not got the meds right yet". The machine clearly showed that my Magnesium & Calcium were very low and my Vit D was almost none existent. Needed 5000 i/us daily for a month to get it up to right levels. 4 Days after starting taking the Nutriwest products (Including Thyro Complex) suggested the pains in my legs were already going. Now I can play 3 games of golf in 3 days!!!! Plus Sea Weed extract for the Iodine which was also low and helps (apparently) to convert T4 to T3.
Now only taking a small amount of Magnesiun/Calcium & Iodine to keep the levels right.
Now that my body chemistry is right I'm only taking 75 mgs Levo instead of 125, although I might have to go back up to 100.
How does your clinician know what levels of supplements you need???
Not ever having heard of a Kinetic machine, I could not comment. A Google search shows nothing whatsoever of a medical/heath type other than a massage machine and sports training equipment by that name, so it must be a pretty rare thing.
Whilst I am no fan of many Allopathic medical practitioners, in the way they interpret many things, the science behind most of it is still very good, and tests and diagnostic means they have at their disposal are as good as you are going to get - however USING those tests constructively in managing conditions is something they are not at all good with!
Such pains you describe are often due to low Magnesium and low Magnesium is almost unbelievably common
I know of people who have taken 20,000iu of Vit D3 daily for many months and STILL not got to the upper quartile of the range. What I have learned however is the wisdom of not supplementing D3 without also using vitamin K2, it helps calcium NOT migrate into the bloodstream from bones (and consequently keeps calcium levels stable too), the blood is NOT the place to have amounts of calcium dumping itself!.
Iodine in thyroid illness cold be a whole major area of discourse on it own.... especially with high antibodies and consequently not a route I have followed.
After all, if blood T3 is optimally high enough, it IS Iodine based! (Tri-IODO-thyronine!).
I must admit I am very dis-inclined to supplementing calcium at all, unless under medical review and as it isn't hard to get optimal levels by selective eating I would much prefer to get it by eating higher calcium foods, and similarly (especially) so with potassium, Magnesium is another issue though, not something that is easy to absorb at all.
This Thyro complex you describe is very much the sort of cobbled-together product I avoid like the plague... it's full of multiple substances, some of unknown effect, and some with very well known effect... D-alpha tocopherol for example is a form of vitamin E I really would not want to take at all (it displaces the gamma form, and may well be worse than none at all!), folic acid is not well absorbed by many people, I much prefer the Tetrahydrofolate type (safer and more absorbed) and Liquorice root is notorious for interactions with drugs; it also has proportionately a lot of copper in relation to very little Zinc to my mind. With some other things, the amounts are not really high enough to be worth bothering with. (although for that reason I suppose won't do any harm)
For many.good iron/ferritin levels (not my problem!) and Vit B12 are vital... and need testing if in doubt - neither are in this product.
Not cheap either! Abut 30 quid a month.
With supplementing for many things it's not a big worry about getting it right or wrong - water based supplements in excess generally are simply pee-ed away, you have to be more careful with fat soluble stuff though.
My view is, if you *need* to supplement anything then in general individual specific supplementation is much more suitable, one size rarely fits all and that way you can be more selective with WHAT, and why and relate it to what else you take too.
No I haven't done this, but I have used T3 for this purpose.
Something to consider - for me, yes it worked, (2nd attempt as I "bottled out!" the first time, thinking I was hyper when in reality I was hypo and not on nearly enough). As I am only sub-clinically hypothyroid, I was hoping the reduction in T3 would let me live without any thyroid replacement at all, (with everything else in place for proper T4 to T3 conversion)... I was fine for a short while, yes - no RT3 meant I was well, but sadly, within a matter of months, I was back as before - I hadn't removed the cause of the RT3, so I suppose it is inevitable.
My problem in this respect is probably inflammation as I have chronic (intractable) pain.
Do you know the cause of yours?
Can you resolve that cause - I can't do anything about mine, if you don't know what it is, then it's the same!
I take NDT now, and generally I am very "sorted" and given up on worrying about RT3. Taking some T3 (in the NDT) seems to counter the effect of (and some say reduce) the RT3, and I haven't bothered to have it measured since.
If you can get to the bottom of the cause (and there are plenty), then it's probably a very worthwhile approach, if not, then like for me, it's a waste of time
Taking SOME T3 (in NDT form or along with T4) seems to be the easiest way, it seems to reduce/manage RT3, although not as dramatically as using the T3 only solution (btw, I would NOT want to live on T3 only if I didn't have to, it's a bind) although it won't necessarily mean rock bottom RT3!
I don't routinely monitor bloods at all with NDT now... it's based on how I feel, temperature and heart-rate too - that's the way it was done for 80 years, and it seems to work pretty well for me and others on this forum too.
Don't officially know cause, but viral encephalitis followed by post vital fatigue, then thyroids uneven for 8 year s, leading to high cortisol.. Long term stress trying to fight through symptoms for 12 years..... I could go on in regards to how I have needed to mistreat my body not to miss out on education, job, stopping myself being in a pertinent rut and depressed.....
If it looks remotely promising D (and it's not easy to determine this - so it may come down to try it and see) it's likely worth trying to sort whatever the underlying issue is with supplements and other treatments. i.e. to look for a proper 'cure', restoration of balance/normality or healing rather than run with the patch up that replacement hormone can amount to.
Quite a few (especially naturopathically oriented) practitioners will anyway seek to go this sort of route before replacing hormone. It doesn't always work for whatever reason (e.g. the thyroid or whatever system is too damaged, or the treatment doesn't hit the nail on the head ?), but even so there are often good reasons for doing so i think.
One problem with supplementing hormone too early (even for simpler issues like primary hypothyroidism) seems to be that it may well remove the natural signal that would (with a bit of help) have resolved the situation. e.g. an under producing thyroid may well require elevated TSH (the result of our remaining hypo for a period) to trigger the required response.
Another could be that the reverse T3 is e.g. possibly be the result of your system signalling adrenal issues/burnout - as a result of their putting high cortisol for too long due to chronic stress (it's not always evident to the patient), or low due to adrenal fatigue caused by e.g. that same stress in the long term.
Dosing T3 might short term resolve the feeling of fatigue caused by the reverse T3, but longer term might e.g. rob the adrenals of the required rest period. We sometimes it seems need to be prepared to wait it out.
The more natural/physiological response in that situation may be to kick back and relax for some months - while using supplements to help the adrenals to heal, and to fill any nutritional gaps or imbalances. Hard to do at times, but continuing to press on with life/patching the problem with hormone might equally risk more serious e.g. adrenal problems in future.
If nothing else there's quite a few docs about that are reluctant to prescribe hormone 'too' early - it's regarded by some as bad practice.
We're very disposed to seek the fastest seeming fixes, but it's perhaps not always the best route. The supplements seem anyway unlikely to be a long term requirement - if they don't produce the required response within a reasonable period then your practitioner will presumably be required to review the situation?
Maybe your doc has some views on the pros and cons of this?
Wow!! Insightful stuff!! Think this has given me confidence to wait this out before hitting t3!! I'm in Australia now aiming to soak up the sun and not work the crazy life I had in London... So finger crossed!!!
"an under producing thyroid may well require elevated TSH (the result of our remaining hypo for a period) to trigger the required response"
Yes, a PERIOD, but how long!?
Surely no-one here is or has ever rushed into fully replace on the basis on one or two readings, even less urgently when they are faced with having to do it on their own....most people I have spoken to have been battling for AGES before getting that far - I forget how long I have had TSH over 2.5... YEARS, maybe tens of years! I was ill back in the 1980s what now could likely be described as Sick Euthyroid, but was seen as some sort of vague post-viral condition and although I did improve after several months (and a pontless Endo referral!), I never got "better." I have got or had just about any and every symptom you could care to mention too from Queen Anne's sign to dry skin to nail problems to exhaustion to plantar fasciitis to carpel tunnel syndrome, weight gain, lethargy, noise sensitivity, memory issues (scares me some of the big events about which I have totally forgotten the detail, brain fog (putting it mildly!).... I could go on and on, but I won't! That's not to mention the other Endocrine issues I have from years of being on Opiate pain killers. (Opiates are known to lower TSH in animals, but ALLEGEDLY not in humans... hmm, yeah sure! (That is my problem I really suspect, the endocrine signalling [all of it, not just TSH!] has been turned down to a "lower volume"
Before I started even with RT3, TSH was always over 2.5. I have since had a (probably) viral thryoiditis with real hyper symptoms, and rock bottom TSH (<0.01) that lasted briefly and since then it's been up over 5, it's been down as far as 3.5, (still seen as Hypo in civilised countries) but in the meantime I haven't been well throughout. Low T4 and T3 too... although frankly unless I have paid for it, relatively FEW T3/4 bloods ever courtesy of the NHS, but they were never ever in the upper part of the range, that according to GPs and Endos alike is just plain FINE!
There comes a point when in the face of the "bleeding obvious" you have to do SOMETHING about it, and whist I am well aware of being as subject to the placebo effect as anyone else, I feel far better now than I did then! If I had waited any longer I fear I might have ended up like my Mother, who was undiagnosed years, then under-treated since with premature heart failure the result, or too old to tell the difference, like my Uncle who was in his 70's before they finally sussed it!
I'm another P that came through that route. The fatigue set in in the late 80s, and it was downhill all the way from there to landing in hospital in 2005 long after loss of a career and enormous suffering with clotting in a left renal artery and dangerously high blood pressure - which led to the discovery of a thyroid cancer, a total thyroidectomy and retrospective discovery of advanced auto immune thyroid desease. (diagnosed by the pathologist after the surgery)
I spent from 1997 onwards trying get a diagnosis of hypothyroidism - it was obvious from long before that it was the problem in that i was ill with all the symptoms and multiple consequential illnesses too. It was never ever diagnosed.
I was even treated holistically for about 9 months by a holistic GP in the early 2000s - he couldn't get my thyroid working again - but didn't move on to make a formal diagnosis of hypothyroidism either. (the usual problem with bum blood values, and fear of professional censure if he prescribed hormone)
There's no question but that we have to act - for good or ill. That if these more holistic/natural methods don't deliver within a reasonable period that we have to try other stuff.
I'd happily have settled for hormone after my nine months under the above guy as it was around then that my downward trajectory really steepened - but against that if i'd got to him maybe 6-10 years earlier it's very possible that he might have succeeded.
My suggestion to Dan took from his post that he's most likely at a similarly early stage - nothing like where we ended up.
I guess all i meant by that was that many would suggest that thyroid problems have their origins in gut, adrenal and auto immune issues - and that if the thyroid is not too badly damaged that it may be possible to obtain a more complete recovery by treating these underlying issues. That immeditately prescribing hormone may mean that the thyroid never fully recovers, and we need lifelong replacement.
That doesn't mean that many of us don't end up in this awful limbo where we get neither effective treatment of the underlying causes - nor proper diagnosis of the hypothyroidism. So we're left to suffer....
Hopefully I can restore as much of my natural health as I can over the next month's/years, but it annoys me so much that modern medicine isn't it s all cracked up to be and that without this forum, were all alone.
I've been posting quite a lot in the past 2-3 months Dan on how it seems that chronic stress (often as as a result of learned or exaggerated stress responses/or even foetal/post traumatic issues rather than the 'now' situation) and no doubt individual predisposition is often the precursor of chronic fatigue and hypothyroidism - and how this scenario so easily progresses on into the auto immune, gut and other illnesses so many here report.
A quick search or two using terms like 'chronic stress', exaggerated stress response, and cortisol should bring up a lot of it.
Here goes again - this uses your post as an excuse. (pardon me for those who have read it before)
The problem is that if we lose homestasis or balance of our systems through overdoing it/lack of care it can so hard, and so long a road to get back - that's if we ever can. The key is catch it early, sort it out and run with lifestyle changes to prevent it happening again.
I'm writing partly from personal experience - i ended up in the above zone and with serious illness after 15 years+ of struggling with hypothyroidism and chronic fatigue which led up to a thyroid cancer, advanced thyroid auto and wider auto immune disease, gout, repeated infections and a thyroidectomy in 2005 - and have managed to somehow with lots of work to be lucky enough to be guided back to reasonable health.
I started with almost zero awareness of my body, and of what staying healthy (especially in a high pressure job) entailed - i was the classic ruler of the universe (in my own mind) driven by personal inadequacy to over achive.
I didn't figure this out from scratch. It's rather the case that having spent a lot of time on mindwork (meditation, visualisation, energy work etc), diet to eliminate problems foods (gluten, additives, milk, sugar and one or two peculiar to me), supplementation (minerals - see the thyroid UK list), dental mercury removal and optimising thryoid replacement dose/T3 and T4 mix I seemed by early this year to have run up against a brick wall.
I was in decent shape, but still struggling with low stamina, gut issues, not feeling great, some aches and pains and high blood pressure.
It pointed to adrenal issues, and research threw up a sizeable body of work out there on treatment of chronic stress, and the cycle by which the resulting raised cortisol output becomes chronic, and leads on into all sorts of consequent isues (weight gain, problems with sugar/tendency to diabetes, hypothyroidism etc) and eventual adrenal exhaustion.
There's no guarantees, but it's by now looking like this approach has possibly cracked it for me - i got through yesterday with zero blood pressure meds, while my stress responses (still to be re-tested via the Genova saliva based cortisol test) seem to have normalised.
There's a number of web pages and books that set out the broad approach, but two refrences I've posted repeatedly are a much more specific than it looks manual describing the condition and how to treat it by Clymer Health clymer-healing.myshopify.co... (the title is 'Mastering Your Life'), and this series of web pages which describes one lady's symptoms and experience of a very similar treatment protocol for the problem under a different lady naturopath. medicinegarden.com/2011/02/...
My experience has been very similar to what she describes, but use your own judgement in respect of all of this stuff as while i've seen no issues there's no guarantees that any is safe or effective.
Key elements if the stress responses have become exaggerated and programmed seem to be getting an adrenal stress profile done by Genova or the like to see if you have a real adrenal problem, and understand what stage it is at and how to treat it - and the use of adaptogens like rhodiola and Seriphos (phosphorylated serine) to give the system a chance to re-programme itself to normal ise the stress responses. If the adrenals are exhausted then supplementation of these may be required too - but the method matters.
I'm inclined to feel at this stage that the adrenal profile should (barring obvious pointers elsewhere) almost be the first port of call for anybody running into fatigue problems. It may not be definitive, and for sure thyroid testing and evaluation is critical too - but on the other hand if the adrenal situation is not right then neither can the thyroid metabolism be.
Don't rely wholly on conventional medicine, or any other type. The key step seems to be to take responsibility for ourselves, and to learn to walk between the raindrops. To extract what's positive from mainstream and alternative medicine worlds, but to avoid the bull/the tempation to capitulate and place ourselves in the hands of an incompetent.
There's a lot of good information out there, but a lot of well dressed twaddle masquerading as officilaly sanctioned 'fact' too - an hour or two on this site should dispel any illusions regarding the competence of conservative medicine in this field...
It has its role, but mainstream medicine in truth failed me utterly over all the years - to diagnose the cause of my fatigue, the hypothyroidism and the auto immune disease - and since 2005 has done little but to erect road blocks/fee booths to block access to the required medication. Multiple consultant physicians meanwhile failed to do more than fiddle with blood pressure pills in response to that problem.
My sense is that it's more than worth the investment of time and effort in learning how to how live and stay healthy - the earlier the better since it beats the hell out of struggling for a large chunk (at best) of a person's lifetime with illness and feeling bad....
Unfortunately my low adrenal response hasn't improved after a few years... I still need the hydrocortisone, about a year or so ago I slowly weaned off to try, and was "walking" generally - not too ill, so my adrenals were still outputting but the hypoglycaemic events returned even on low carbs Afraid that seems to be the effect of the Opiates in my case.
No use at all - I am exactly someone who SHOULDN'T! I have chronic pain - hence chronic *inflammation*, I can only attempt to lower that and manage it best as I can, certainly can't get rid of it, miracles are hard to come by!
Like many other conditions, there are easy-fix common situations, and small numbers of more unusual cases whose circumstances are less well known. I am not convinced I am in the easy category.
That said, I am not totally convinced about it either, genuine adrenal fatigue (or whatever you want to call it, there are plenty of options!) is pretty scary on it's own, with panic and adrenaline release stress enough in it's own right. dosing T3 whilst low on cortisol is not something I am keen to try, it's bad enough without the T3!
I am one for following tried and tested protocols, rather than ones that very few people have successes with, using physiological doses of Hydrocortisone has been used (abroad, not here other than Addisons!) for decades.
After being well for some time, it's also not something I fancy, being ill again!
The only 'Golden Rule' in the thyroid patient world that I know of is: "There is no one size fits all". It always comes down to taking responsibility for your own health and trying to figure out what your own body needs. Each one of us has unique genes and life experience. Chronic pain has to be one of the most difficult experiences to deal with and it is good to see you write "After being well for some time". I also am one of the 'unusual cases' and I have used HC for 25 years. I think Paul R. is on to something and so do hundreds who have found that CT3M works. He very clearly states, over and over, that it is not for everyone. You have considered it and decided it is not for you, that is all that needs to be said, your decision is the only one that counts. None of us that have spent some time in the living hell of "Zombieland, the land of the living dead", ever want to go back there again. I'm glad you found what works for you. Respectfully, PR
Interesting to see you have used HC for so long.... I lose track now, (see: the memory is fantastic!) but it must be over 4 years now, the adrenal issues were by far the greatest priority for me, I was barely upright at times, yet to an Endo, I was fine!
Chronic pain is indeed difficult although I have recently re-set my pain reference points since having kidney stones - that's brought a whole new appreciation of pain! Very shortly be having surgery - Hydrocortisone dosing discussed with very accepting and understanding surgeon, not yet seen the Anaesthetist though!
picton, I've been under twice for hernia operations and what they did with me was 100mg soluble cortef, essentially liquid HC, right before the operation. It leaves you feeling very antsy but then they put you under and by the time I woke up I didn't notice anything. Well, not from that anyway. PR
Yes, that's exactly what I was planning, (I had dosed only about 20g extra for Cystoscopy, it's not as invasive) but what I am expecting is some sort of prim and proper grilling over Hydrocortisone and how terribly dangerous it is! (didn't get that from the Surgeon!)
Hi P. Not sure what you mean by 'opiates', but this might be of some interest if you've not found it already/it's relevant.
In my digging on the topic of HPA (hypothyalmus/pituitary/adrenal) programming and high/low adrenal output i tripped over a forum for people recovering from long term use of benzodiazepines. (valium and the like - the site was benzo buddies) No idea if there's much sense coming up there, but they seemed to be trying all sorts of routes.
It seems that benzos can cause a particularly nasty version of HPA programming that can take ages and be very resistant and difficult to sort out.
I'm intrigued by your mention of hypoglycaemic events. I've had similar tendencies since I was a kid - getting the wobbles due to low blood sugar if i didn't mind what/how and when i ate.
It became much more pronounced since i developed hypothyroidism - which seems like it has an adrenal component. The blood sugar issues may well have an adrenal component too - can't remember the details but i seem to recall reading something about it.
I've made it through the day without blood pressure meds today for the first time in many many years after about 2 1/2 months of work to reduce my cortisol levels. That's using adaptogens as posted elsewhere.
It's early days, and far too early to say whether or not there's something fundamental going on (it seems that the aim in HPA re-programming in this case may be to encourage growth of the number of receptors for whatever acts to counter cortisol or something like that), but it's quite promising.
Your situation may be quite different, if only because your adrenals are still low (?) - this is just in case it might trigger a thought.
The balancing act could be to find a way to support the adrenals enough to let them recover, but not overdo it/do it for too long - to the point where they may not be worked hard enough to grow into taking up the running...
Yes, I can relate to some of that - even as a schoolkid, I had the classic late afternoon "low blood sugar" droopy feeling and even sometimes shaky... in fact when I look back, my glucose metabolism was always a bit less than ideal...(up to now it still hasn't developed into Diabetes, despite family members in that position, but I do have reactive hypoglycaemia and Insulin resistance which I control with low carb eating) lived on carbs, as many people do.... but became ADDICTED to carbs after long term eating low calorie/low fat dieting (rebound weight gain etc.), and when my existing disabilities worsened and took over, the fitness went totally and I was almost wheelchair bound for a while, and as well as massive weight gain, the Endocrine problems became the big issue and flattened me! Opiates.... 20 years or so - Codeine based, then Tramadol for many years and now stronger Opiates - Buprenorphine.... all known of course to cause adrenal insufficiency (even the type Endos DO admit exists!) and hypogonadism... low testosterone which I do have (and am treated for - that's a challenge in itself).
Long term use of NSAIDs (decades!) are also having some noticeable long term effects too... eg. kidneys- preteinuria and might be a factor in my Hypertension too, although the period of unexplained uncontrollability of that I had that came on a year ago MIGHT just be due to the damage Kidney stores have caused some of which I am having surgically removed in the coming weeks!
Cortisol is very significant in blood glucose regulation, as you say.
The effect of opiates on HPTA (and more!) is well known, but NOT well understood and even less well treated and handled. A condition called "Opiate Induced Endocrinopathy" has been documented, but I reckon it is decades away from being an everyday well understood condition. It's hardly likely that my any of this is going to recover whilst still under bombardment from opiates though, hence it's never figured high in my strategy, although I do think it a good idea to try for many people.
Despite the similarities you're into territory i don't have much feel for P. It's scary just how illness of this sort can eventually end up manifesting as a complex of interactive problems if not nipped in the bud - it eventually gets very hard to develop any sort of a view on healing approaches beyond responding to symptoms.
We're (those of us so predisposed) it seems the canaries of the modern world - showing up the problems of modern lifetsyles. Against that it seems that medicines can play a signficant part in creating the scenario too.
My impression is that understanding is only a part of the problem in accessing rational treatment - that social, economic, professional and bureaucratic factors mean that in effect very complex problems of this sort may end up effectively excluded from more than superficial engagement unless we take responsibility for ourselves...
It probably sounds trite - but good luck with the project. ..
HYPO DAN: Please Please Please tell me the name of your Dr. in North London. I have been searching for so long and if they prescribe armour and do these tests they must know what they are doing. I live in NW London, and I know they are private, at this point willing to pay whatever for right treatment and tests! Thank you!
hypo Dan yes please can you please also tell me the name of the private doctor you have seen in North London. getting nowhere with NHS endo who says there is no scientific evidence for the use of T3 in humans and will not accept the ASI saliva test as evidence for adrenal malfunction also says the short Synacthen test was normal and has stated in no uncertain terms that I must not have Prednisone (low dose) and has written to the GP that I must not be prescribed it, have tried on 3 or 4 times to do without it and I get very bad pains in the loins and gut plus I can hardly stand.
Picton, Vajra ,and PR4now ,reading your posts has been so interesting and informative
I am learning a lot from your experiences and knowledge you have certainly been through a lot I wish I had you guts and knowledge. am at my wits end at present . Hospital endo will not accept I have an adrenal problem ,does not accept the ASI test say not reliable my short Synacthen test say was normal 372 basal and 734 at 30 minutes. told I don't need prednisone and has written to the GP I am not have it , Tried a few times to do without but get nasty pains in loin and can't stand after awhile .
actually I'll have to continue this tomorrow as it it rather late and I beginning to feel unwell and covered in sweat plus funny heart beat so I better rest.
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