So last week I was here all excited as I finally had a bottle of T3!
Whilst I am a sensible, educated person and I realise these things don’t just work overnight (tho I was secretly hoping), I’m not sure I expected to feel so rubbish.
Headaches - constantly, tinnitus is back along with chest pressure and some chest pains - I think but I could just be being paranoid - and my undermedicated annoying stiff neck is also back, and it’s all really not going how I hoped it might!
Now compared to where I’ve been, these things are minor, and no doubt transitory, so I’m up for waiting to see how it pans out but can anyone help me feel better about this?
I’m on 125mcg levo which I take at night and 2x5mcg T3, taken first thing and at about 4 pm.
Do I need to go less? Do I need to go more? Do I need to just take my 45 day script and do bloods like the consultant said and bide my time?
Tell me it gets better and roughly when? 🙏🏻
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Murphysmum
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Well I can only speak from my own experience. I couldn't tolerate T3 until strictly gluten free.
I found it wasn't a walk in the park, when it was finally added successfully. I always find symptoms get better and worse initially, then gets worse before it gets better. Usually about weeks 5-7 after a dose change approx I want to chuck the whole lot in the bin!
I love your commitment to the “frees” slowdragon! No, that’s a line I absolutely wont cross! Whilst I did consider gf, dairy is a step too far! 😂
I never expected this to be an easy transition. My body certainly hasn’t had enough T3 for the last 18 months and probably not before that either, though I’ll never know. So suddenly changing 15 years of treatment wasn’t going to be without it’s downfalls.
I guess I just need to hear some people tell me it’ll be fine!
I was horrified at idea of gluten free diet. But I was virtually immobile. Prepared to try anything. I would never go back. I wouldn't even consider anything else. Loads of GF options, even eating out is rarely an issue
Yes I haven't gone dairy free yet.......but many, many people on here are either both Dairy and GF or just dairy free
Even at my GP practice it was recommended I try dairy free. I am considering it
It’s whatever works for the individual isn’t it? I like all my dairy-based foods way too much to give it up! (Said whilst eating a yoghurt!)
I’m not as bad as you were otherwise I think I would try anything. I feel like I’m 95% of who I was two years ago but finding how to get back that last little bit is proving difficult. I’m not convinced that dietary changes will help as they weren’t an issue before, although I guess that same logic could be applied to making changes to meds.
I started off hypo and was up to 125mcg levo. Then developed antibodies and health took a big dive, went GF and that helped eventually also went lactofree. I now have organic butter and lacto free (Arla) milk, cheese and cream, they do yoghurt too. I still supplement with Vit D and K also B12 and B complex.
Realised there was still room for improvement and am now slowly adding T3.
Started with 6.25mcg of Greek (from internet) In December I managed to get private scrip from GP and ordered Thybon Henning from Germany and now on 10mcg. Have just done 4 weeks of this and will need to increase once I have done some bloods. Symptoms come on again in afternoon. (German T3 cost me £50 and Boots would have charged £1000 for 100 x 20mcgm tablets!!)
I decided it took me along time to go downhill so getting back to the top will also take time. Patience has never been one of my virtues, so I just look at the symptoms I used to have and see how many have now gone!! Hope you soon see a bit of improvement. I understand your frustration.
I, like you, have a distinct lack of patience and although I know there is no quick route out of thyroid issues I suppose I was quietly hoping I’d instantly feel some improvement! And d’you know, there is - my legs finally feel light again and I feel I’m able to summon up some more energy/muscle strength where before I felt like I was humphing sand bags around with me. This has been an almost instant change. So that’s a big improvement and you’re right, I can’t lose sight of where I’ve been.
Onwards and upwards... I must remember this. Thankyou for your reply, sometimes you just need to hear that someone else has done it 😊
I am the same went gluten free for over two and a half years, also dairy free, antibodies still over 1300 (range 0-60) so now I feel I have to live with it, although a lady came to my house to do a sensitivity test of which I was a bit sceptical about until things like tomatoes, milk, eggs flagged up which I already knew and included all the wheats so I still avoid gluten but am not so particular if I do eat something with gluten as I figure I can't feel any worse lol.
I was told that things do get slightly worse before they get better and to take T3 very slowly, you are taking 5mcg twice a day straight off maybe just do once a day for the first week or even two weeks and gradually ease into it.
In fact I haven’t taken my T3 today - I’m having a day off! Sadly I still have a headache and I’m getting those weird, dizzy brain spells that then ache at the base of my skull. Oh how I hate that, it’s such a disconcerting feeling. But I wonder if giving it a few weeks for my T4 to lower before adding in the T3 again might help. I don’t know but I definitely felt better a week ago!! 😩
A friend of mine who has been on prescribed T3, no levo, reckons that it takes a good six weeks or more to settle down and in the meantime one can expect possible horrible symptoms likes aches and pains. I have Hashimotos, high anxiety, broken bones through osteoporosis and hyperparathryoidism (also being ignored by endo) so I feel as rough as, but will try and stick it out for the six weeks. I hope you feel a bit better soon.
Thank you... and good luck finding your “sweet spot” too!
Argh, I just feel awful, but I know I couldn’t expect to just change things and there be no kick back from my body. I’m taking a couple of days to reset I think, then I’ll reintroduce - low and slow!
I might suggest that a lot of trial and error may be involved before you discover the combination that best suits you...but with patience and time you should find it.
It has taken me almost a year to go from that first delivery of T3 to feeling human again!
I believe it has taken others even longer.
During that time I've discovered that I am DIO2 homozygous and almost certainly thyroid hormone resistance - both of which came with challenges and required a lot of reading/investigation/monitoring/testing. And, most recently, that my DHEA is at rock bottom.
I was first diagnosed hypo about 20 years ago and told "this little white pill will make you well again"....it didn't, but I struggled on until I could barely function.
My GP had run out of ideas following many scopes, scans and treatments so I knew I had to take control ...that eventually led me to today where I self medicate with T3-only. Like you I hit a lot of obstacles and sometimes felt I'd never improve....but I did!
My T3 levels must have been gradually diminishing over many years....
I'm not suggesting these are your problems but hoping my experience will offer some encouragement! You can improve but as we have all found out here there is no quick fix and once you understand that it takes the pressure off and helps a little so that you can concentrate on learning more and slowly improving your health.
I didn't have to follow the advice of an endo (my guidance and support came from here) but going by many people's experiences here I'm not sure I would have improved that way. Sadly most medics have a very limited knowledge of thyroid issues as many of us have discovered.
Hang on in there because there is light at the end of the tunnel!
Yes, with the correct treatment you will get better but remember that T3 is a very potent hormone and must be added very gradually and by no more than 5mcg/ 6.25mcg at each step. I suspect you may have added too much T3 too soon,
Even Dr Toft couldn’t quite decide what was going on with me... a little bit of my soul died at that point!
I wonder too if I’ve “managed” on levo for the last 15 years. I would say I was fine for years but in the very late stages (like month) of my first pregnancy, my brain function suddenly dipped. Everyone said baby brain and it’ll go, but it never did. Again, things remained constant until after I had my second child when again, my energy levels took a definite dip. Again, “aw, you’ve got two young kids” etc, etc but I literally crashed and burned at 7pm and have remained that way. I used to play sport in the evenings after a full day in a physical job and I couldn’t dream of that now!
Then onto what I think was an immune flare in 2017 after a period of prolonged stress which has left me where I am now.... slowly improving (now I almost back to normal) but unable to get fully well.
When I look back, for years I had dizzy spells. I recall phoning my boss to tell him I wasn’t going to drive that day as I felt so dizzy. I also had really lethargic days with no reason for them, ie, I hadn’t run a marathon the day before.
So I wonder too if my T3 levels had been gradually depleting too. I think I got away with it until I had two kids and the physical toll that requires if your body meant I never fully got back to optimal levels (of anything with hindsight).
I’m very heartened by your reply because I find it hard to work out what’s changed now compared to 2 years ago.
I may look into the DI02 thing as it might explain a few things.
I think I’ll take a few days to regroup and then reintroduce T3 but at half the amount. 😊
Just going out but I'll have a look at your profile this evening....
A genetic test might be a good idea it certainly helped point me in the right direction and confirmed the v poor conversion I suspected.
Do you have a copy of your original (diagnostic) test, I first saw mine a couple of months ago and immediately realised my then GP has missed a red flag.
My health started to decline about 40 years ago....so chin up, you'll get there! It just takes time to join up the dots!
.Just had a look at your results from a month ago.
Your TSH is low but that would be suppressed by the addition of levo (the pituitary would not then send a message to the thyroid to produce more T4....so low TSH results)
Your nutrients are all too low which may be affecting your general health as well as conversion.
Both FT4 and FT3 are high in range which does not immediately suggest poor conversion...but that may not be the case.
Instead (and as a starting point) I might suggest that your levo dose is too high.
This may mean that you have some unconverted T4 pooling in your system which needs to be cleared by reducing your dose. This I believe may be causing adverse effects.
If may also be the case that levo/T4 does not suit you and T3 is the way to go.
Through trial and error/titration at various levels I found it does not suit me.
Did your endo suggest T3?
Was this after those private blood tests?
What reason did he/she give? Your private blood test of a month ago does not immediately indicate low T3/ more T3 required but...again, that may be misleading!
Although your serum T3 appears high that does not mean it is reaching cellular level where it is required to do what it does in the trillions of cells in the body.
It may be that your T3 receptors have partially and gradually shut down over many years due to a lack of an adequate and constant supply of T3 in the past.
Over the years the amount of slowly reducing available T3 may have kept you ticking over until the cellular T3 level became low enough to cause problems.
I have concluded that this is what happened to me over many years until I could barely function.
I base all this on personal experience, observation and results but I would suggest that you need to slowly decrease your T4 dose while very gradually increasing your T3 dose until you find your sweet spot.
However, were you to discover that your conversion is very poor - and at this stage after adding thyroid hormones that is difficult to ascertain - it may be that T3-only is what is required to achieve wellbeing. A genetic test would provide the definitive answer.
If it turns out that RTH is the problem you may need to take a large dose of T3 in order to provide enough to penetrate the cells via the remaining active T3 receptors.
I currently take 100mcg in a single dose in the early morning....without RTH that would leave me vastly overmedicated!
I hesitate to suggest that you may be resistance to thyroid hormones (RTH) but I certainly think it worth investigating. If you wish I can give you a link to an ebook which offers easy to read info.
Do you monitor your temperature, if it is consistently low then RTH is a strong possibility.
I'm afraid this is a bit of a hasty ramble but hopefully it might include something that helps because I understand your frustration and determination to feel better.
Hello Murphysmum , Strength and Sympathy for you . In my experience dosing with low dose NDT for my T3 mix with a higher dose T4 (Levo) is the way to go . Knowing your FT3 FT4 TSH values are very important . You might need to lower your T4 before adding any T3 . In addition It might be advisable that you lower the T3 to 5mcg and split it . Try 2.5mcg T3 AM and 2.5mcg T3 PM . I further split my T4 in half too . I find that this way dosing works well for me . Personally I don't do well with high dose T3 either . It causes me to have palpitations anxiety irritability lethargy hunger not feeling satiety aches and pain .
Go Slow and Low . Slow and Steady Wins the race .
Nutrients are very important . They help our thyroid meds to work better for us .
Vitamin "D" /K2 , B-Complex , B-12/folate , Fish oil , Magnesium , Iron if you test low , Celtic Sea Salt for Electrolytes/ Adrenals .
Going for me gluten dairy sugar soy coffee free made a huge difference too .
Agh. I give up. For the moment anyway SlowDragon elaine2447 jgelliss DippyDame Thank you all for all your responses - I’ll try to include replies to some queries in this response.
So, a week past Wednesday I started on 5mcg x2 daily of T3, and reduced my levo dose then to 125mcg per day. (Prior to this I had reduced to 175mcg after my most recent bloods showed I was over medicated on 200.)
The first couple of days seemed fine but with a bad headache that seemed to increase towards the end of the day. I stuck with it until Wednesday when I posted here. On Thursday I had a day off! Just to reset and to confirm that the headaches and I’ll feeling were as a result of the T3. They were.
I restarted on Friday but reduced the dose to 2.5mcg T3 twice a day. For reference, I take my levo at night and was taking the T3 first thing and around 430pm. Yesterday, I was ill. I had a really bad headache all day, sharp shooting pains in my head accompanied by dizziness and pain/stiffness at the base of my skull. It was really disconcerting and although I have had these symptoms before, they tended to be shorter lived. I find the sharp pains and dizziness the worst of my symptoms as I worry for my brain health, it’s not nice.
Maybe I need to get my vitamin levels spot on before resuming? Maybe T3 isn’t for me?
I realise things might get worse before they get better and I was determine to see it through but Ifind these symptoms really scary and as soon as I stop T3, they stop.
Any further advice? I’m really stuck now, don’t know which way to go. I could just return to 175mcg levo and live with it but I had such hopes for including a little T3 😢
It sounds like you might be very sensitive to the T3. Perhaps it could even be worth trying just one 2.5mcg dose each day to see if you can tolerate that? I've just increased my T3 dose (like you, I'm on T4+T3) and had some unpleasant side effects at first, which made me seriously consider dropping back down. They weren't as worrying as yours seem to be, though.Two weeks in I feel like I'm starting to edge out the other side. Just my experience, and I certainly can't advise pressing on when it might not be right for you, but just wanted to share that sometimes it can pass as things settle down. Very best of luck to you, it's really not an easy process.
Thank you. I’m normally far more relaxed about these things.
I realise it’s only a week, I mean a week for goodness sake. I’ve been trying to feel normal again for 18 months now!
But these head ‘sensations’ for lack of a better term are really not nice. I may try as you suggest in a few days time, thankfully the effects seem to wear off as quick as they come so I’m fine today.
Thanks for your reply though, it’s always very reassuring to hear someone in a similar situation 😊
Really glad to hear the side effects have passed so quickly. They're disconcerting aren't they, especially when all we have is our intuitive sense of when to push through and when to dial back -- and that is hard to trust when you're trialling T3 for the first time! It sounds like you have a bit of scope to work on the vits and come back to T3, maybe it'll be a smoother ride once those are at optimal levels. Best of luck to you.
I feel your frustrations . But don't give up . Persistence and patients pay off . But I must tell you that thyroid meds are to be reduced slowly not more than 25mcg at the most at a time and hold it for 6 weeks . I sometimes raise or lower my T4 by 12.5mcg only . You can sometimes over shoot your *Sweet Spot* . Then you run labs with T4 T3 TSH to see if and how the values have changed because you don't want to shoot in the dark .Your lab values are very important too . You need to know what needs to be raised or lowered ? Your body also needs time to acclimate to the new dose changes . Just remember *Slow and Steady Wins The Race* . Please read this great Article . It will explain to you why we need to wait with new thyroid dose change . Meantime nutrients will help you with your thyroid meds too to work better . Vitamin "D" /K2 , B-Complex , B-12/Folate , Iron if you test low Vitamin "C" , Celtic Sea Salt for Electrolytes /Adrenals .
Thank you. I’ve been around the foum for about 18 months now so have read lots but I’m really deflated by this.
My vits are not yet perfect so I may take some time to work on that before returning to try T3.
As I said, my last bloods were showing is was over medicated on 200mcg levo so I dropped to 175 for about 3 weeks prior to starting T3. However, I cannot stand the weird sore head, dizziness etc that is coming with it. I really thought I’d be able to push through but I can’t stand it.
I was only taking 125 levo and 2.5 T3 and it’s making me feel awful.
Should I just shelf it for a while and once my vits and mins are better, try again?
It's beneficial to have your vitamins up to par . When you do your next BW for your thyroid values ask to have your vitamin "D" , B12/Folate , Iron , Magnesium values checked too . You might want to have your Adrenal/Cortisol checked via 24 hour saliva and DHEA-S via BW .
Magnesium, folate and vit d are now fine. Still working on b12 and ferritin although they’re in range, just not optimal. Wonder too if some of what I’m feeling is b12 related but I’ll try a bit more to get this up before I pursue that avenue.
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