Having spent 18 months on T4 mono therapy and still feeling rubbish my FT4 reached 78% in the range but FT3 was still lagging woefully behind. My TSH was under range and trying even a small amount of T4 on top of 125mcg of Levo made me feel very over medicated so I’ve taken the plunge and I am self medicating T3.
I’m only taking 3mcg twice a day to go “low and slow” following advice from here. WOW! 😳. I can’t believe the difference. I feel so energised it’s incredible. I feel like I did 4 years ago before all these horrible hypo symptoms took over. Can this really work so quickly (5days). In fact I felt an immediate difference on the first day! Think of all the hypo symptoms there are ……….. all gone.
However, I have felt a bit too “wizzy” if that makes sense to I’ve had to stop the second dose in the afternoon.
So just 3mcgs a day.
Is it really that powerful? How is it making me feel so energetic and clear headed? I’m really interested to know how this has happened.
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SarahJane1471
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It is remarkable stuff and hits the spot quickly as it is instantly available, I found the same, it is quite amazing how a little bit of what your body needs can return you to your 'old' self within hours isn't it, especially when you've lost all hope of seeing that person again...
Funny your comment about 'wizzy' Citrinesun and I have renamed Roma 'whizz' as it seems very fast acting but doesn't last 😁
I think it's down to how your receptors respond and how much they have shutdown due to lack of T3, yours are obviously soaking it up and putting it to good use... so a little goes a long way?
You may also find that your ability to convert T4 will improve if not restricted by genes...?
Or you might find as things settle in you will need a little more... like you say slow and steady, listen to your body
I think everything flushed to start with as the life literally flows back into you! Sadly the initial euphoric hit eases as your body adjusts to a steady flow 😊much like wine...
I ended up needing 15- 20mcg ( still fiddling) but would add a little and wait 1/2 weeks for things to settle as like you say it is much faster than waiting for T4 to level up.... are you keeping an eye on your BP / RHR and base temperature? I find these a really useful gauge of how things are settling 🤗
Like you say maybe stick to am to start but weirdly you might in the end take some before bed as it also helps you sleep... I took a sneaky 5mcg before bed last night and had a great nights sleep
Thankyou. Yes BP/pulse all still the same. Low. No palpitations. Just zingy. I will stick to 3mcg until I settle then up it. Think I’m too scared to try night time 😵💫
call me 'overcautious' if you like ( you wouldn't be the first ~ my driving instructor voiced the same opinion .... but that was in 1980 something and i've never come a cropper and i drive 'big trucks with 2 .5 tonne trailers' very well thankyou )
if "3" feels good.... don't make the mistake of assuming that 6 will necessarily be an improvement... personally if "3" made such an improvement to me as it has done to you ... i'd give it a few months and see it that carried on before fiddling with it .
must admit i do enjoy the look on their faces when a small female scarecrow steps out after fitting it between their badly parked BMW's and the gatepost.
thanks tatty. I agree wholeheartedly. I too am a very cautious person. I’m very happy with this dose go far. I actually could weep it’s made me feel so alive !!!!
Can’t agree more with tattybogle comment. I think/I am sure I somehow managed to overlook precisely what she says AND I managed to do it twice. I felt this pressure? to increase my 2.5 mcg per day, when in fact I was already doing very well. I still can’t really understand why I did that. It’s positively weird. I clearly did not fully appreciate what was happening. I also found it difficult to believe the quick improvement - almost immediate. I have had to stop it altogether for the moment because of heart issues. If only I had not increased, I might still be getting the benefits (in saying that my muscles have remained a little improved - I can’t find anywhere that intimates that is possible) but now I am back at square one. DO NOT OVERDO IT!
it's easy to get seduced into thinking we must need more than than 'a teensy weensy bit' of T3 ... partly because everything you come across in print says that "the average thyroid gland produces 80% T4 : 20%T3 "
But that figure was not based on any one real individual.. it was based on 14 individuals whose thyroids all produced significantly different ratio's.
80/20 was just the mathematical 'mean/ average' of those 14 people.
In reality their actual results look like this. Some make teensy weensy amounts of ready made T3 ( person 14).. some make shed loads (person 3)
It's is just as likely that you and SarahJane are the people who made a teensy weensy bit of T3 when healthy , as it is that you are the ones who made shed loads.
(and it it turns out you only need teensy weensy amounts of T3 to feel healthy again then thats a definite 'win' on the financial / supply front.
that makes complete sense. It may be in a few weeks months my body asks for a bit more T3, but it may not 🤷♀️. You were right! Slow is best and listen to your body 🥹
I have had to think about this overnight. There is a lot of mention about where our Frees are and where they should be. This info for T3 flies a bit in the face of that. However I can see it’s a fact from this info. AND it makes sense as to the individualisation we often talk about on the forum. Really good information. At the moment it restores some of my thoughts on T3.
I’m still on the 3mcgs and I’m taking slowly as advised here. My body has spent 4 years deprived of thyroid hormones ( particularly T3) so it will take time for it to recover.
well I hope that’s the case for you. My GP provides the Levo and I self source the T3. ( GP doesn’t know about the T3 and I have no intention of telling her yet)
I experienced an immediate zing with Thybon Henning (less so with Roma). So much so that I thought that I may want to reduce the dose. However, a few weeks further on and my body has got used to it. Still feels good but doesn't last all day and hoping for an increase instead of a reduction. The body adjusts, time will tell.
So pleased it's helping. Yay. I decided yesterday that I'd finally increase my ndt.....I had been feeling rubbish, cold winter so quarter grain increase yesterday. Equivalent of 2mcg of T3. And whoosh, Bob's your uncle, I felt alive.....amazing. This morning could talk properly (had felt like I got something in mouth), energy is back. And of course extra initial weeing!
WOW! you are right I am weeing more. Hopefully get rid of this fluid retention. So yes I feel “ alive “ again. Just cannot believe the difference.
My GP doesn’t know I’m doing this 😬. I’m on my own with this. So fed up I decided to break out of the NHS prison. I can’t afford to go private so it’s all down to me and advice from you guys…………..(oh yeah so NOT on my own)
Could not have done this without the support on here 🙏(cheers SlowDragon )
Awww been there got the badge. Self medicated for 3yrs before finally nhs agreed to pay. I do miss the automony of self medication though, but it is expensive. Luckily my dose allows for a little variation....set up by an older wise GP doctor.....whose now retired. Newbies don't seem to have noticed that....yet. 🤞🤞🤞
and yes the “autonomy” feels great. Oddly I made this decision on the back of my GP diagnosing me with ME/CFS! I absolutely knew that the reason I still felt so shite was being hypo! I’m just not going to tell anyone until I absolutely have to.
Ahhhh the ME/CFS Diagnosis. I had that one too.......specialist consultant diagnosed me & refused to withdraw it once I recovered with proper thyroid treatment. He said the Hypothyroidism was a consequence! Bull!
Indeed. What annoys me is that Hypothyroidism is an exclusion for a diagnosis of CFS/ME. But because their testing protocol misses Hypothyroidism until its very advanced its not picked up. Hence his alledgement that I developed it later on. I had all the classic physical features of Hypothyroidism that is shown in old medical text books. I'm not saying ME/CFS doesn't exist just that there's a whole cohort out there of patients wrongly diagnosed. This must confuse research done on the condition.
totally agree with you. I’ve seen some CFS research that highlights people with CFS have low FT3. ……. Well give them some T3 then!!!! It seems so obvious that it could be studied 🤷♀️
in practice, hypothyroidism as 'an exclusion' seems a bit of a grey area .
untreated hypothyroidism is clearly an exclusion for CFS/ME diagnosis .. but 'treated' hypothyroidism doesn't seem to be .. 'treated' in my case meant the GP writing "Hypothyroidism ~ adequately replaced, stable on dose of 150mcg Levothyroxine " on the referral form .
can't remember if it included TSH/fT4 results , or even said 'in range' .
They were in range when i asked to be referred:
TSH 0.06 [0.02-6]
FT4 23 [11.2-26] but it was 2 and a half yrs later by the time i was actually seen by them ,and they had no interest in what they were.... ever.
The fT4 was actually over range on same dose by the time i saw them (not that they asked) :
TSH 0.04 [ 0.02 -6]
fT4 22.8 [9.5-20]
But that didn't stop them accepting me to the CFS/ME programme for 18 months .. and they were VERY persistent in getting me to fill in and return the QOL forms, especially the one for 6 months after the end of treatment to assess it's success , so i have clearly been included in the clinics 'stats' showing their successful treatment of 'CFS/ME' patients.
But curiously .. there is no official 'diagnosis' of CFS/ME anywhere in my GP medical notes .. but the words "fatigue" "chronic fatigue " and "CFS " do appear frequently in the GP notes when recording my appointments ....... even though those are not words i have EVER used as a way to describe anything to a GP.
So i'm not 100% sure if the NHS 'officially' see me as a CFS/ME patient or not ..... but the CFS/ME clinic have definitely included me in their staistics
that’s terrible treatment! I’ve had a referral appointment to BATH rheumatology dept for April. We shall see what comes from it. I’ve had loads of blood tests which they will see. I will definitely be telling them my hypothyroidism has not been adequately treated. The bloods were done before this experiment with T3 but I won’t be telling them about it ………… it’s a long way off so I don’t know how I will feel by then.
My GP is the one that keeps saying CFS/ME so I’m assume she has stated this on my notes🤷♀️. She knows I’m not happy that Levo mono therapy has not worked for me so it can’t be classed as “successful”. I know the NHS is under pressure but it really is sad that we have to find out how to be well from sites like ours. It shouldn’t have to be this way. What about the people who just don’t have the courage to seek out support like this forum 😏
MY GP definitely knew i didn't consider Levo to have 'worked' .. well not fully anyway,, as soon as i was on a stable dose about 18 month after diagnosis , i was saying very clearly "well it's about 75% better for most of of the time, never 100% ... but i keep crashing for a day or so after i work hard .. why "
i'll be interested to hear what sort of clinical testing/ investigation etc you get out of the rheumatology dept etc ,,, i was expecting something clinical/ clever/ scientific from the ME/CFS clinic which is why i asked to be referred.... waited 2+ yrs .... got given a book (and talked to).
My GP said at the time i asked to be referred " I don't think it's the right place for you , and i'm not sure you'll get on with them ".... correct ..... you should have heard how angry i was at the 2nd appointment after i'd read the book .
no , was contemplating it , but last year was pretty good on levo now i'm in charge of my dose and i don't let the GP meddle ,,and anyway i'm used to 'me' now so life works ok at the moment. Haven't ruled out having a play at some point though , but if i do i'll just DIY, can't see any point whatsoever letting anyone else get involved in things if i do, From what i see on here, endo's would just fuck it up way more than i ever could.
🤣I always love reading your posts. You crack me up 😂. Having had a shite few months with bad PTSD attack/DVT/exhaustion where I could barely get out of bed I’d just had enough of waiting. With a supply of T3 j thought I’d experiment. I don’t have money to go private as I’m too knackered to work. Would love to work and get my life back to 2018 levels.
not sure i want 'a job' again .. got quite used to this "semi retired" malarkey in the last 3 ys and got plenty to keep me busy .... got 2 "semi knackerd" houses to do up. Just waiting for thing to warm up a bit in march and i'll be down a cellar murdering woodworms.
mind u , if life get's anymore bloody expensive i may have to reconsider that 'Job' position.... that'll be interesting .. know of any jobs for 57yr olds, which aren't overly physical, don't involve using 'tech', and don't involve being nice or obedient or talking to other people ?
😂 ………. Cleaning 🤷♀️. Don’t know where you live but when I had the energy to clean private houses I got £13 an hour cash in hand 🤚. It must go with age. I’m 58 and prefer no stress/people/annoying bosses. Garden and fields/river/canal behind my house is just perfect for me…………. a beach would be my dream 💭
i did 'get by' quite nicely on cleaning posh folks country piles for a few yrs ... spose i could go back to it...,ain't got a van anymore though so i'd have to find something more local.
I've got a beach 150 mtrs from my front door . very nice it is too and i can see mountians with snow on, over the water. to get to my blood tests i just walk up thebeach for a mile and half in my sandals .. it's ace .
mind you what's outside my back door is rather less salubrious ... Alleys , Sofa's . ...... Arsonists .
🤣. Yep lots of posh people in my town ( not me obvs). Sounds like you live in a great place (with security cameras). Rich people love a good cleaner and will pay 💷. However it’s exhausting and I just can’t do it anymore. Weirdly, I found it really satisfying. No stress. No work to take home. No bosses/public/colleagues to piss me off. I hated cleaning until 12 years ago now I’m OCD 😂………..maybe it’s another symptom of hypo !!!💭
maybe i'll try getting the council to pay me to clean the alleys since i do it anyway.
Cleaning is great , i love it too ..... obviously i mean cleaning 'other peoples' dirt .. my own house ...well .....about 3% of it is very very clean even under the floorboards and right into the corners .. corners are sooo important when you clean something don't you think ? ...the other 97% ranges from 'patina ' to 'filthy' depending on how closely you look lol
Wow! That's a disgrace Tattyboogle. Hypothyroidism is an exclusion - might be why it's not formerly on their correspondence then. Shame on them.
I remember that programme at the specialist centre. The psychologists said I was a very positive thinker and proactive! The oT recommended chair raisers that I needed to buy. The programme was one of a graduated increase in activity.....failed dismally on this as crashed everytime I tried to increase (can't think why!!!) & of course that was my fault. then the homeopathy chap was very nice but despite his best efforts couldn't find anything that worked.....even ordered some special remedy fro. France! Bless.... of course what I needed was thyroid treatment......but clearly my blood levels didn't meet the requirement for that.....my body did though!!
😳is that what it’s like?!!! Oh shite. I’ve had so much of that with my mental ill health I really will loose my s..t if they try that. Don’t get me wrong ive tried many many alternative treatments and I think if they work then brilliant. But know my mind and body very well so this kind of centre will not work for me
It was like that over a decade ago....no idea what its like now...
Maybe you don't get the sugar pills anymore..... and I believe they're not meant to enforce exercise anymore. I believe I was seen once by psychologist, once by OT, Twice re exercise prog plus a couple of phone calls & several times by homeopathy. They discharged me after that. I was glad.
interesting how different that is to what i got,,, what year was yours ?
mine was about 2010..... i got "a lady in a room" ( and the book! ).. same lady ... same room .. see her once a month ... we talked about 'boom and bust' a lot(which was useful for me, to be fair ) , she said i was one of her 'high functioning' patients and they had many who were more incapacitated than me , (but everyone got better if they wanted to bad enough don't ya know ...)
Drew me some pictures and we tried to figure out a weekly exercise plan that found my 'baseline of activity' that didn't cause symptoms and to only increase from that in a VERY controlled / gradual way, and go back a stage if it caused relapse.
I found it utterly impractical in reality , basically found it impossible to stick to such a low baseline and not do more activity than that and still look after kids /life/ work ... might have been possible if had childcare and didn't have any responsibitlies for 12 months ~but not in real life .... She said my life was bit chaotic (which i think was their get out clause for it not working , i had an alternative lifestyle true but i wasn't 'choatic ') and anyway whose life isn't a bit chaotic when they're a self employed single parent with hypothyroidism that isn't fixed by levo but the doctor says it is even though they're a zombie after 4 pm and crash for 3 days after a full days work ?
Their letter to my GP accepting his referral said i'd "been accepted for individual therapy" and the discharge letter proudly said i'd "completed their 18mth "pragmatic rehabilitation treatment programme" .
Mostly hogwash .
The book was really useful though ,after i'd read it (and done a lot of swearing at it's thinly veiled pseudo scientific contents) it kept my wonky chest of drawers with three legs from being wobbly for about 10 years. lol
😅 Glad u found a practical use for the book Tattyboogle. If I'd been given one I'd probably have used it as tinder for my log burner!!
I went to the clinic in 2007/8 I think. So that notion that it's all in the mind was there in your sessions..... They fell flat on their face with that one for me as the psychologist was very impressed with my positive outlook & proactive approach. Sort of knock it on the head that it was my mind being the problem. Stupid notion in any case!! Equally though no one thought to check my thyroid again though at the clinic.
I was like you single parent with a full time demanding job to hold down. How on earth are you meant to keep things low based.......not designed for busy working Mums eh?
Are they any further forward now I wonder...I shall wait with interest to how Sarah Jane gets on.
After a bit of a tussle with my GP about anti-depressants, she is putting me forward to a CFS/ME clinic. If it’s anything like the cardio/exercise place I got sent to after my heart attack it could be very good. Who’da thunk it? A diagnosis of CFS/ME could be useful? No offence to anyone else with this diagnosis!
it could be useful IF the CFS/ME clinic is interested in what actually happens to your body..... in my (and wavylines) experience, they were not remotely interested in that , it was based on an assumption that the issue could be fixed by a psychological approach. But our experience (detailed in replies above this one), was a few yrs ago . (i went to one around 2010) .. So it is possible things may be looked at differently now with the growing acceptance in some quarters that long covid is a physical 'thing' .
So it could be worth going along to see what they offer.... but honestly i'd say don't get your hopes up too much ... you may be pleasantly surprised , but you may find all that is on offer at most places is a variation on the theme of CBT to get rid of your negative attitude to exercise or getting better/ and learning how to pace yourself .
The obvious downside of a CFS/ME 'diagnosis' is that it may colour / limit any further investigations / treatment options , as everything apart from 'broken leg' , can then just be attributed "to your 'fatigue' ,and you've had all we can offer for that" .
In practice i don't think it makes much difference to how GP's treat you whether there is an 'offical' diagnosis of CFS /ME or not .. once they have formed that opinion about the cause of any symptoms you have ,they will run with it anyway even if it's not officially noted .
So .... IF you get you to go to a proper clinic doing proper research based physical investigations. THEN it may be useful to have a CFS/ME diagnosis. but other than that i can't honestly see it being 'useful' for anything .
Disclaimer .. This is just the jaded and grumpy opinion of a cynical woman about to go out in the freezing drizzle for bus journey to the dentist for something expensive and probably unpleasant . lol .
Not at all. I agree wholeheartedly. I was hoping for physical reconditioning only. Since stopping exercise have slipped into Type 2 diabetes whereas had been on the cusp for many years.
I might have jumped into that one since the research is so powerful. I think I might just have got overexcited that CFS/ME were getting more interest in T3. Squash that.
I think the research shows people with CFS/ME have low FT3 levels but no research so far actually giving patients T3. Although it seems an obvious thing to do 🤷♀️
The prescribing formularies for most CCG's( ICB's now) limit prescribing of T3 to Endocrinologists .. many don't allow it anymore for 'treatment resistant depression' ( it use to be the case that a psychiatrist could prescribe it for that purpose )
So unless the CFS/ME clinic have an Endo on the team .... it's probably 'not happening'
According to the blurb I’ve read the Bath Centre says I will have access to a rheumatologist/endo/physio…….,,,,,, we shall see. But I think you are probably right ( again 😂)
Yes it is really powerful stuff. You might find that in a few weeks you can add back in the extra 3mcgs as symptoms may return, but not always. See how it goes.
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Just Echoing what everyone is saying especially TiggerMe with our nickname for Roma lol. It definitely made me stay wide awake most the night but then everything else felt a bit flat to say the least heart rate slow BP low, but when I first started tiromel I felt alive and I lost half a stone, hr fast..
however have others have said you can get used to it, and the sort of 'honeymoon period fizzles out' I guess not in everyone,
but certainly seems there is an initial buzz bcoz you are getting what you desperately need to function, then you may need to tweek a little up or down,
I'm still tweaking 🤔
it seems it's an ongoing thing I find I do need more if I have a lot of stress and not so much at calmer times in my life.
just test regularly and pay attention to your body I would say.
I was the same as you though I could not get on with 125mcg levo at all anything over 100 & I felt over, but still not well, until adding T3..
#predictive text spelling tweaking for twerking.. 🤣🤣 good job I noticed! lol..
I felt an immediate positive reaction when I started T3 liothyronine Thybon Henning combined with Liquid Levothyroxine. Oh boy what a game changer. I went from being unable to hold myself up even to eat and had to be helped to the loo. The NHS basically abandoned me. I had lost my brilliant job as it had been going on for 18 months getting worse and worse. I went private only and was prescribed T3 liothyronine immediately. As soon as I took the T3 it felt nothing short of a miracle. I was up walking and doing things I could not manage prior. I piled on 4st then rapidly lost it after starting T3. I feel 10 or more years younger, alive, enjoying life and happy. It really did happen very quickly. I take 5mcg twice a day 8hrs apart. I’ve tried a few brands and for myself Thybon Henning is the best. Eventually the NHS prescribed the T3 they supply Morningside Healthcare 5mcg size tablets. I find they give me a big rush but I feel it doesn’t last long. I got my bloods done after switching to Morningside brand and my TSH had gone up, T3 down and my weight had crept up too. So either I need more than 2 doses a day of that brand or a higher dosage twice a day. It’s all about trial and error but it takes time. Be careful not to overdo it or you could go over medicated and some of those symptoms can be very similar to under medicated, heavy feelings, sleep issues, feeling hunger cravings, dizziness. The list is endless really.
I’m so pleased you feel so good. I’ve not looked back since starting T3. It’s a miracle drug. My friends and family cannot believe the positive change in me. I’ve not put any weight back on as I’m now full of energy and go on daily brisk walks and join the gym over the winter months. Punch the air with glee and enjoy life!👍😀🎉👏
Thankyou so much for that. I’m going to go low and slow ( as advised by SlowDragon ) . So please you feel well again. Four years ago I was a fit healthy size 14, walking across countryside four miles a day, cleaning private houses 3 hrs a day, then living life the rest of the day. I’ve become a size 18 couch potato 🥔, not having the energy to even shower, cook, brain fog, cold, daytime sleeping ( the list goes on).
I will be careful and continue testing. If I only need a small dose, say 5 mcgs a day, then I have a year supply ( which will be more soon 😜).
I will avoid my GP for now. They’ve not asked me for blood tests since j started Levo. It’s been me suggesting tests! My TSH is underrange already so I’m guessing it will be undetectable on T3 🤷♀️.
your story sounds similar to mine. I went from an active size 14 to laying on the sofa unable to walk and a size 18 within 18 months. I just didn’t have the energy nor strength to hold my own body up. Dreadful isn’t it all. My GP admitted he knew nothing about the thyroid or its conditions, only test results to be in range. He said on two occasions that I may as well be talking to a plumber! I then went private and was diagnosed straight away as a very poor converter of T4 to T3. I have the faulty DIO2 gene I later found out. It was a miracle when I started T3. I couldn’t believe it for ages. At first my TSH went suppressed and the Drs not liking that I decided to slightly reduce my levo dose from 75mcg a day to 68mcg a day. I didn’t change my T3 doses of 5mcg twice a day. Hey presto my TSH came just about into range and importantly I was feeling brilliant too. So my lesson learned is that it’s not just about the amount of T3 you’re taking but also about how much T4 you are taking too. The TSH looks overall at both T4 and T3 levels in your system. I keep my T4 and T3 levels just below mid way this keeps my TSH just about in range. That’s without taking meds that morning. Soon as I take them the levels go up. I get my bloods checked every 3 months and have done so for some time now. Always my TSH is within range.. just. Last time it was 0.89 (0.35- 5.50). It can be done with tweaking levo as well as lio in my experience. The only reason I tweaked it is my NHS Endo threatened me with withdrawing my T3 prescription if my TSH was suppressed. Not a great thing to say to a patient when they can see the importance and improvements of T3. Stupid even. He should have said I’ll help you manage your levels with correct dosing. Anyways, I did it myself. Now he is very pleased and never questions my prescriptions. Similarly with my private Endocrinologist also. My life has never been so energised and happy in many years.
Thankyou . Really appreciate that information. I will wait until I’ve found the correct T3 dose. Test bloods ( privately) and look what my TSH is doing. If it’s really bad I’ll try what you suggest. It’s at 0.02 (0.38-5.33) at the moment. It will be interesting to see what happens.
Just to update……. Whoosh/wizzing has stopped and I had a little lunchtime nap. I’ve now added an extra 3mcgs in the PM. It’s been an hour since the second dose and I feel better again 😳. This is really powerful stuff. It’s been 1week since I started T3
Glad to hear..... Dr S explained it like this: when your are hypothyroid your body and system goes into a sleep position......so you have to wake the body up slowly by adding the thyroid hormone in in small amounts. As it wakes, it needs a bit more and a bit more and so forth. So increasing the dose slowly keeps pace with the state of alertness of your body and the speed your body is currently running at. Hence why we titrate the dose upwards slowly. Bless Dr S.....always explained everything so well.
that makes perfect sense, Thankyou. I’ve just come back from a 4 mile cross country walk with a friend 😳I haven’t done that for about 2 years!! I’m windswept and pleasantly tired with my feet up. …….. and that’s on top of the 2 miles at 8 this morning. This how I was 4 years ago 🙌🙌🙌🙌🙌
So pleased you've had a bit of the old you .and got the wind in your hair
At the risk of sounding like a kill joy ... a friendly warning from one who has always had to learn things 'the hard way '
Pacing .
Remember that little red car ?
You've been parked up in the garage for quite a while.
6 miles of walking in one day is almost certainly 'too much' when you haven't been doing that level of activity for months/ years .
I do honestly understand how impossible it is to resist the impulse to keep going because you're enjoying feeling like a normal person again.. but your body is not used to it and plenty of people on here still have problems with 'crashing' even on T3...so don't push your luck .
Pacing is all about learning to stopping 'before' you want to .
if you pay for today later on .. don't panic , it will be ok ... you may have to learn this lesson the hard way like i did ....
🙏I hear ya! Today I was testing myself……I knew that tomorrow I can have a day of rest. But you are absolutely right. I too push myself too far at times. 👍
but we only know it cos we got it wrong ourselves already ~ more than once ,... i'm my case i refused to really learn that lesson for about 15 years until i'd had personality transplant
Don't beat yourself up SJ .
and don't worry ..it's not permanent f*&%*d , but you can probably forget about having a nice time again till about thursday ... then aim for something more like one mile walk 'every day', and if you do ok with that ,put some tunes on and have dance round the house while you hoover .
build it up to a 2 mile walk every day over a few weeks...... kinda thing
'Boom and Bust' is a monster that will try to fool you into feeding it ~ when you feel like "you" again, it wants you to carry on ... don't feed it.
🤣🤷♀️. To be fair I already trudge a couple of miles first thing with my dog. The extra on Saturday was a test. But yes a big mistake. It was back to bed this afternoon. Then I just started worrying that I’m doing the wrong thing taking T3 😩😬. I’ll stick to 3mcgs in the morning. Bad girl Sarah 🤦♀️
Who wouldn't enjoy the feeling of being themselves againwhen they've been lost ... you're not bad .. you're human .
Don't doubt yourself, or the T3 .. just let yourself recuperate gently for a few days ... same as you would if somebody else had just run a marathon and collapsed on your doorstep .
UPDATE: it’s been 12 days ofT3 and I wanted to update this post to show progress ( or not). I initially felt fantastic starting T3, 3 mcgs twice a day, but after a few days once a day.
On day 8 I totally overdid it ( because I felt good) and felt the consequences for 3 days.
I’m still feeling both jittery yet having more energy. It’s so confusing🤦♀️. I feel overmedicated. It’s not simple though. My pulse and blood pressure remain unchanged. Low. The thing is I am “ buzzing” but not in a good way 😬. I don’t really know what to do now. Should I stop or will my body get use to the T3?
I’ve been taking a very small dose of T3 for 16 days now. I’m not sure that it’s agreeing with me.
I so confused about this because initially I felt fantastic. My energy levels were like they were prior to being diagnosed. And they still are even though I’m only taking 3mcgs a day with my 125mcgs of Levo.
The thing is if I add another 3mcgs I’m so “whizzy” I can’t sleep for more than 4 hrs and wake in the night so jittery I can’t get back to sleep.
I tried not taking any T3 one day and still felt great that day without the jitters.
So now taking it in the morning. By lunchtime the internal jitters and spaced out rush start and then by 7pm they ease off which then means I can sleep. (Oh and a stiff neck for 2hrs)
Is there any way of taking T3 without getting the rush/jitters?
I don’t want to give up T3. I’m just so confused how so little can have such a massive affect on my body. Is it worth persevering?
you've got 16 days more experience of taking T3 than i have, so out of the two of us that makes you the expert ... lol
but .... my instinct says keep your dose (and time) the same and give it a few more weeks for your body to get used to it.
If i change levo dose by just 12.5mcg ,....for the first 4/5 weeks i will feel different every few days , sleep and all sorts of different symptoms are all over the place ........and from then on, i can start to tell more reliably if it's getting better .. or getting worse .
I would strongly recommend sticking with it , as you are , for 6 weeks ,
I've seen many people automatically increasing dose from 3/ 5mcg within just a few weeks .... and seen so many other people stop trying something after 2/3 week because it really doesn't feel right .... but my gut instinct is :
if it takes my body 4 or 5 weeks to figure out what to do about a small dose change of 12.5mcg levo which is 'small beer'..
then surely it would take most peoples bodies at least the same amount of time to figure out what to do with a much bigger change like "a daily swig of the 'hard stuff'
Allow it to have some stability and consistency in what tools it can expect to be given every day , before you judge it on what it manages to do with them .
thanks tattybogle . That does make sense. I’m just panicking a bit because my TSH is below range already. Should I reduce the Levo by 12.5mcgs? Would that make a difference to the rush/jitters I get in the afternoons?
a) you have to start that '6 week' clock all over again
b) your body is unsettled again.
Rather than tweaking anything at this early point , if it was me i would be trying to find a way to deal with feeling jittery for another couple of weeks .. eg , i'd try running up and down the stairs a when it started, or going a brisk walk ,to see it that helped burn some of those jittery feelings off a bit .
very good point ( as per 😂). I will try to be patient. I’m just hoping they wear off ( the side effects) because I definitely feel I have loads more energy. Thanks Tatty 👍
Based on my observation that when you start working in a bakery you get a few weeks of "what a wonderful smell i'm working in" .... before your nose gets used to it and you don't notice it any more. ( shame )
Which is as good a theory as you'll be getting out of me on a sunday afternoon
I'm wondering if the jitters are adrenal related? I to have low BP which doesn't rise much when standing and relatively low RHR now back to 70 which is around my sweet spot.
T3 has a knock on effect and is taxing your system as it has upped your tick over, it can be tough on your adrenals, if they are already flagging after years of holding everything together this could be the reason for the jitters?
I take my T3 full dose first thing which works best for me as I found splitting I'd always get a slump I don't get the jitters unless I overdo something.... like this morning I went to spend an hour weeding a gravel drive for my daughter and came back trembling, tea, biscuits and an adrenal tablet which I should have taken before I started really... all good by the time I've finished my tea, so was it the digestives that helped possible low sugar or the glandular 🤷♀️
I've been building up using adrenal glandulars which seem to help but I'm not giving up on the biscuits!!
T3 is marvellous stuff but it makes you think you can suddenly get on with stuff BUT you really have to pace yourself or it catches up with you bigtime like you have discovered 😞
I walk 5-8 miles most days but if I try to up my speed or do something more intense it all goes pear shaped!
I'm thinking Hidden is our adrenal glandular guru as she has been a user 😆a little longer than me and I'm hoping she'll jump in and share 🤗
I can't remember are you on the adrenal cocktails? 🍹
thank you. That kind of makes sense. I do get strange wobbles with dizzy/jitters than a sudden craving for salt/sugar. But I’ve been having that for years. I’d not linked that with adrenal fatigue 🤔. I’ve thought about glandulars but I don’t want to add anything more if I can help it. I’ve been a bit lax with the cocktails this week but will start them again ( good shout).
Hi there, I haven’t got anything useful to say but just wanted to thank you for posting. I’m in a similar position and not started t3 but really interested in how it works out for you. Please do continue to let us know how get on and I hope you find a resolution.
I thought I’d update this post just in case anyone may be searching about T3.
It’s been three weeks now and yesterday I increased my dose to 6.25mcgs. My body adjusted to the the previous dose and I felt ready to go up. This is also much easier to cut a 25mcg tablet.
I would definitely say to anyone that is sensitive to meds to go low and slow with T3 as I have found it very powerful.
I am feeling so much better than on T4 only. My brain fog gone, no constipation, more energy, Achilles heel pain has gone etc
But, I do get a really stiff painful neck 2 hrs after taking in the morning which lasts for about an hour ( weird one I know). And now I’ve upped the dose I have a very small tremor in my fingers when I hold my hands out in front. This disappeared after a week when I started T3
I am also a bit zingy still, but nothing like I was in week two.
I think I will stick to this dose for the next 6 weeks then test.
oh dear 🙈I think this has gone wrong. I’ve felt far too zingy on this increased dose of 6mcgs. I’ve been having really bad buzzing/ vibrations. So bad it woke me up at 4 am and I could not get back to sleep. I’m so frustrated with this.
Any suggestions what I do next? Do I go back to 3mcgs and wait a bit longer. Or reduce Levo ( I’m currently on 125mcgs).
Has anyone else had this and persevered with T3 and then it settles.?
I've had this and once I'd checked my cortisol levels... low... I've been adding adrenal cortex and the buzz has gone! 🤗
You might want to drop back to 3mcg and hope your cortisol levels pick up, especially if you are feeling a bit to whizzy... I can't remember if you have checked your cortisol already?
Edit...
Thinking about it, it kicked in when I had reduced my T4... So I had been increasing my T4 at this time as it had dropped back to 25% now back to 72%, your T4 was only around 60% in January so I wouldn't have thought dropping it will help, as it has likely dropped already with the addition of T3?
It wasn't an issue when I first introduced T3 and I've been up to 25mcg and dropped back to 15mcg...
Gosh it is so hard to know, maybe stick with it as it has only been a few days and it might settle and give your body a little longer to adjust, the trouble with blood cortisol is that it shows total cortisol (so might be misleading you) rather than available which is what the saliva test shows.... also it can be high in the morning and then drop low for the rest of the day, which is why you have to do it 4 times.
Mine was ok'ish first thing and then dropped off
It's tricky without knowing your real state of play.. how was it when you just took the 3mcg T3 less buzzy? Maybe drop back if that is the case.... either way you probably need to give it another week to settle
I'm afraid you are in the zone of suck it and see which works best for you, sounds like you are pretty tuned in but you need to give it time 🙃
HR/BP and temp all low. I’m going to go back to 3mcgs again. I think I should leave it to settle for a while. I take in the morning with my Levo so it seems strange that the buzzing is so bad in the night 🤷♀️. Really appreciate your advice on this. Thank you 🙏
Sounds sensible, like you say it is strong stuff and all the reactivating that is going on feels good and bad as we are so used to barely ticking over 🤗
I thought I’d update this post just in case someone does a search re the use of T3.
I started 4 weeks ago and I can honestly say it’s been a game changer for me. At first I over did it with the dose and running around like an idiot over doing things because I thought I could after 4 years of no energy. That was a very big mistake.
However I have now been taking 3mcgs ( yes ONLY a tiny dose) along with my 125mcgs Levo first thing.
Positives - no constipation, energy levels unlimited, water retention going, Achilles tendinitis gone, no brain fog, no underlying depression, sharper/quicker speech, not sleeping at lunchtime, needing less sleep at night, carpal tunnel better.
Negatives- buzzing/pulsating in nervous system worse, pain in knees has returned.
That’s it 🤷♀️. I’m not sure I even care what my blood tests will look like. I’m feeling better everyday. But being careful not to overdo things.
I want to update this post. 2 months on from adding T3 to my T4 I’ve just had results from my Monitor My Health tests.
After nearly two years of trying to get well my results are..,
TSH 0.01 (0.27-4.2)
FT4 19.1(12-22) 71%
FT3 5.4(3.1-6.8) 62.2_%
These are the best figures I’ve ever had………
I feel really well. Almost as good as 4 years ago before my symptoms started!!!!!
I still crash a little when I push myself too far, which I believe is just being unfit from years of being hypo.
This is a note to those hoping f😘to get well…… it can happen if you follow the guidance here.
My TSH is quite low but I really don’t care as my FT4/3 are nice and high in range and my symptoms are almost gone. It’s taken a long time but I’m 90% better.
Sarah Jane it might be good if you put this in a new post to encourage others. Folks might not see it embedded here. Your experience gives hope to folks particularly as others like me keep telling folks it wasn't a quick fix adding t3 and it can take years to find the doses you need . And yet here you are. So glad it has worked well for you
They might. But it is very easy to skim past older posts - rather assuming there will be nothing new. (Even if it is plain as a pikestaff that there is something!)
I don't think they've introduced a post-inches tax recently?
Leave what you've added here - and post as well! Nothing like celebrating good progress.
I think that crashing from pushing too far is an inherent problem. If you knew for sure exactly what you were going to do, and could judge how much extra it would take, you could add a bit ahead. But that is effectively impossible for most of us, most of the time. All you can do is add a little bit when you have already slumped a bit.
People without thyroid issues have no idea how much their bodies do to compensate for what happens in their lives. Mostly quietly, in the background.
that’s a very good idea about adding extra when I know something extra is going on in my day ( I think that’s what you mean 🤔). And yes when I slump I take a little extra 3 mcgs. It’s a powerful/ tricky hormone is T3 😂. I have also noticed that mental/ emotional stress affects my energy levels too, which is helped with T3. I’m still only taking 3mcgs twice a day.
I’m on levo only for now but your experience / update has put a smile on my face and gave me hope. I’m not feeling well right now but one day I hope I will. It’s nice to hear some good news.
I would have been happy to just take Levo but I couldn’t tolerate more than 125mcgs. It took me nearly two years to get to that dose. Sometimes felt like giving up Levo but it did give me SOME improvement. So persevere. The reason I opted for a little T3 is that I just don’t have any energy. I am fortunate that I have a supplier who travels to Greece frequently. Hang in there with Levo ✋
when I started on ndt I felt like a different person, I was only 30 or there abouts and one day standing in shower thinking wow is this how normal people feel. I lost weight, I could work again, my daughter noticed I was up early hoovering where I used to feel like a zombie in the mornings. As others have said it some what wears off and you need to keep an eye on free t3 levels and signs of over medication but yes it’s a wonderful feeling to be back in the real world
yes I think I was undiagnosed for 20 years. So I agree. On the way back let’s say! I think it took at least a year or two for me including starting to work on my deficiencies and gut. Good luck!
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