T3 dosage

[arTistapple]

My T4 to T3 conversion is poor. This is me trying again to manage the introduction of T3. Private endo has provided me with a prescription of Thybon Henning 20mcg to cut into 5mcg pieces. One piece to be taken twice per day. I had such a difficult time last time introducing it, I decided to introduce it at 2.5mcg per day for 9 days, then upping to 5mcg per day for a week or so, before considering another increase. I took the first 5mcg yesterday. One only. Nothing particularly out of the ordinary other than my anxiety of getting myself into a pickle like last time (I think). I really do not want to repeat it. I think my muscle tone is slightly better. I think I am getting upstairs more easily. Although my other shoulder has now frozen or at least it’s now very painful and started long before this question arose and I will have to get some physio.

My question (due in no small part to my previous experience) is about T3 and the body’s need for a regular level of T3. Other posts have mentioned not messing about with the daily amount. The body likes it to be level. Clearly I am not doing that ‘yet’ with this slow introduction.

Can I continue on a slow intro? For example although I took 5mcg yesterday, can I take 2.5mcg today to try to avoid taking too much too soon? Can I alternate 2.5/5 mcgs for a few days to keep the intro slower? I see this is more common with levo but does it apply to T3 too.

I take 100mcg levo.

Last blood test results for endo were: TSH 1.88. Free T4 18.3 (12-22). T3 3.8 (3.1-6.8)

[Hennerton]

I had exactly the same problem and my private endo became so exasperated, he told me to do as I pleased, as he could not offer any more advice. All this because I was having a strong reaction from a tiny dose. With hindsight of my own disastrous beginning, I think you need to keep the same amount of T 3 each day, or your body will not know what is happening to it. The 2.5 amount sounds good, so keep on with that for a week or maybe more and then try an additional 2.5 and keep to that for another two weeks. You may find this is enough, or you may need to increase. I am very thin, hence the low dose. Stay with that and have some blood tests. These will tell you what your levels are like and you can decide from these whether to increase more.

Incidentally, I have had two frozen shoulders anf my consultant nodded when I told him I had no thyroid and said it is very common with thyroid imbalances. A member here recommended a ceramic infrared heat lamp by Beurer and I bought it immediately and used it constantly. Both shoulders began to improve very quickly and I now use it for all aches and pains. It is amazing. My consultant did not recommend physiotherapy. Hope this helps.

[arTistapple in reply to Hennerton]

Thank you for getting back to me. It’s great to know what someone else has done in the same position. I am not thin but I still have a very powerful (and unwelcome) reaction to thyroid medication. I will look at the lamp you suggest. My massage guy is really good but it’s not a ‘cure’, it’s temporary relief but it’s welcome. I have bought an electric blanket which can be left on all night. That has helped much more than I expected. It’s not just the warmth it engenders but the relaxation - fab. The dosage?? Yes I made such a mess last time. Clearly (I think) not being able to get about is a ‘measure’ and I am not easily able to get about. However last time I suddenly lost all power really and experienced a racing heart. Today I literally feel it, even from yesterdays dose, in my wrists and hands making them a bit awkward. It’s early today and very grateful for your reply before I take todays meds. I am thinking I will stick with the 2.5mcgs for a bit longer. Thank you.

[Simplyred57 in reply to Hennerton]

hi could you please post a picture of the lamp or give me the model you bought thank you 😊

[Hennerton in reply to Simplyred57]

The lamp is made by Beurer 300 watt. Ceramic infrared. That is all the information you need. I hope you like it. I use it for any ache or pain and would not be without it.

[Simplyred57 in reply to Hennerton]

thank you so much I’ve had frozen shoulders now ok but have sacroiliac issues now 😫

[SlowDragon Administrator]

no…..You MUST take same dose T3 every day

So yesterday you took 2.5mcg waking and 2.5mcg later in day?

Stay on this for 5-7 days

Before SLOWLY increasing

Would consider adding 3rd 2.5mcg as next step

Taking 3 doses per day at roughly equal 8 hours intervals - waking, mid-afternoon and bedtime

T3 at bedtime often improves sleep

Or if T3 keeps you awake 6am, noon and 6pn

Then wait a week

very slowly increase each dose to 5mcg

Initially increase morning dose to 5mcg

Wait at least a week

Let any increase in anxiety subside after dose increase before considering increasing mid afternoon dose

Retest 6-8 weeks after getting to 3 x 5mcg every day

[arTistapple in reply to SlowDragon]

I started with only one dose of 2.5 pm g per day for 9 days. Yesterday I took only one dose of 5mcg. Today I have not slept well and have now noticed my wrists and hands are ‘wonky’. I recognise the feeling and do not want to repeat my mistake of last time - although I think I may have already done just that! I could either go back to my one dose of 2.5mcg now only? OR all going well take another 8 or so hours later? That would equate the 5mcg I took yesterday but spread over the day? SlowDragon I realise I have been a piece of work with this and I appreciate your first reply. Can you further advise on what to do today? Then I can follow your instructions above.

[SlowDragon Administrator in reply to arTistapple]

I would take two doses of 2.5mcg at moment

Waking and about 4-5pm

After 7 days add 3rd 2.5mcg dose

Let you body adjust to having a steady 2.5mcg added 3 x day

Wait at least a week…..perhaps longer before trying to increase waking dose to 5mcg

[arTistapple in reply to SlowDragon]

Ok that sounds like a plan. Thank you.

[arTistapple in reply to SlowDragon]

SlowDragon I was unable to take your advice. Basically fear. Greatest apologies etc. So my position now is I have not taken any more T3 since the one single dose of 5 mcg Monday morning. Previously single doses of 2.5mcg for 9 days. Tuesday night a shocking 20 minute episode of rapid heartbeat. Took my Levo as usual on Wednesday because although I did not feel well on Levo alone, it was my ‘comfort’ of a sort, looking back from this horrible episode I am having now. I knew I did not feel quite as hellish on it! Wednesday (this night through to morning) another wake up call at this time, 2 am. Another 20 minutes or so not good with pounding heart, followed by a bit of relief. However it has started again, about 5am, perhaps not so bad as being woken by it, but not good at all. Today I hope to speak to my endo. All this reminds me of myself years ago before I went ‘slow’. It was not good but I was a lot younger then. That period lasted many years. At my age my heart will not be as good as it was then to take this strain. I have been thinking about what I have done wrong and off course the fact that I was taking a small dose only once per day was giving me a big drop overnight. I can imagine that this might the problem. Circadian rhythm etc. I think the endo might stop the ‘trial’ and I now think I would go along with that. However, throwing myself back into the medics hands (particularly if I now do have to go cap in hand to the big NO T3 guy) feels very disappointing to say the least. If I was not panicking before this second night of rapid strong heartbeat, I may be now! You may imagine by now, my imagination is running riot.

Any first aid measures you can think of to deal with this in the short term would be appreciated.

I apologise again for not making use of your always excellent advice. Just too scared. I am clocking up the instances of not taking proper advice. I put it down to years of not being listened to. Now I can’t even hear the advice I am being given properly.

[SlowDragon Administrator in reply to arTistapple]

Fast/strong heart beat can be because thyroid levels are too low

Having stopped T3 your body having to readjust

Perhaps go back to just levothyroxine. Wait 6-8 weeks. Retest thyroid and vitamins. Make sure all vitamins are optimal

Then consider restarting again ….SLOWLY

How much levothyroxine are you taking

Always same brand at each prescription

Approximately how much do you weigh in kilo

Remind me. Are you gluten free, dairy free, soya free and caffeine free

[arTistapple in reply to SlowDragon]

100mcg levo. Weight 95kgs. No weight gain or loss overall since commencing levo. I think. I try to take as little notice as possible re: weight. Too many years wasted.

An increase to 125mcg was horrendous. Dropped back but some good stuff remained, less brain fog (if you can believe that on my current behaviour).

Not always same brand, although if they sent Teva I would ask for another prescription due to all the bad reviews.

NOT gluten free. Have previously tried but no major difference really. However I feel more comfortable if I avoid it. Soya free and caffeine free.

I agree, I think I may have made too many changes recently what with the 125mcg fiasco not all that long ago too. I was working with too fine deadlines. I obviously hoped I was getting away with it. So conveniently put aside!

So six to eight weeks wait to restart and start SLOWLY.

As for Circadian Rythym. I should have realised the two doses (whatever they were) were to cover the 24 hour period!?!?

Thank you again.

[SlowDragon Administrator in reply to arTistapple]

You need to think of T3 as (certainly initially when you start) …as short acting

So three small doses roughly 8 hours apart is what you’re aiming for

Starting with single dose

Week later add 2nd dose- 10 hours after first dose

Week later add 3rd dose and tweak timing of 2nd dose earlier in day

You’re likely extremely under medicated on only 100mcg and 95kg

Guidelines on dose by weight is 152mcg per day

Suggest you revisit increasing levothyroxine SLOWLY

Work out which brand levothyroxine suits you best

ONLY get that brand

Increase to 112.5mcg per day initially

You could try splitting dose levothyroxine as half in morning and half at bedtime

If you notice improvements gluten free you need to be strictly gluten free. Otherwise it’s waste of time

Trying dairy free in a month or so too

[arTistapple in reply to SlowDragon]

I clearly have not been paying enough attention. So much attention on getting the T3 and not enough on quite why and what to do if things do not go according to plan! Thank you.

[Lalatoot in reply to arTistapple]

I would try the 2 x 2.5 daily. It may be that you only need a little at a time. You can leave it at that for 6 to 8 weeks and then do bloods. Decide what to do next once you have your results. Dr. Ken Blanchard stated that he thought other drs were fixated on prescribing initial doses of 20mcg daily because that was the common size of the original tablets and so medics assumed that was the dose. However true this is or not, doctors do seem to often prescribe a daily dose of 20mcg!

Some of us only need a small amount of t3 added to our levo. I take 5mcg t3 first thing and 2.5mcg bedtime . This small amount added to my levo has brought my t3 up from 17% to 72%.

[arTistapple in reply to Lalatoot]

Lalatout I always like your frank posts. I have had this particular conversation with myself umpteen times. Somewhere within me I know that even a tiny amount can make a huge difference. I just can’t trust myself very well on this. I know you have posted this before. I thought I was not responding as well as I could (having made this mistake before I am trying to unravel it all). I guess I want it to be a total Eureka moment - and maybe it is and I am just not hearing! Summary I am getting up the stairs better. I can stand longer prepping and cooking. I am not depressed but I do get angry! I sleep less during the day. My catarrh (of years and years standing) is easier to get rid of and I am urinating more again - with no pain. General stiffness is better. constipation improved. What’s not to like? Thank you for getting back to me. I truly appreciate it.

[Lalatoot in reply to arTistapple]

It is about how we measure improvements. After 18 months on my doses I can't do all I would like to do and I still have blips. But I can do so much more than I could a year ago. I don't think my body needs a change in thyroid hormone levels now - what it needs is the time to adapt to my current levels after many years of running on empty. And some damage may never repair fully - for example the tinnitus that came when I was hyper has never gone and will never go; my hearing loss won't improve.

Think back to a year ago and see how well you are doing now!

[arTistapple in reply to Lalatoot]

You are so right. This time last year I could not shake off the depression. I get to have a better quality of sleep. Now I make some plans and take some interest in things. I would like to not just take an interest but actually be able to DO stuff. I think I have been hypothyroid for so long the tanks are empty. In fact I think my body does not know where to put the T3 first. It may be putting the T3 somewhere inappropriate to my wishes. The body may have its own plans, although to me it hardly seems to know what to do with it, creating unpalatable symptoms. @DippyDame talks about T3 receptors and the need for time for them to learn how to operate again - I hope I have that correct! So maybe too much is going to not the quite correct places or not in quite the order, as the receptors have been switched off. When I got my first levo, it clearly protected my heart and I was out of pain (on trying to get about) in my heart for more than twenty years. The muscles other than the heart are a wee bit different and I think they could take more time. That muscle at the front of our thighs is huge and no doubt will need to suck up the T3 and I hope improve a very painful pirifirmis, so my walking will improve. My pulsatile tinnitus was acquired going on to the 100mcg of levo and I still hope to get rid but it’s amazing what you can learn to put up with - especially if you are feeling better! I am going to try to trust my body a bit more as to what to do with the T3, whilst not ignoring the distressing symptoms. Sorry about the long reply. Your post made me think more. Thank you

[crimple in reply to Lalatoot]

Lalatoot, I also added in T3 very slowly. I was self medicating so even more cautious, even though I did regular blood test to check levels. It took me about a year to add in 20 mcgm Thybon to 100 mcgm levo. Now on Sigma Pharma, since NHS accepted I needed T3 (poor converter) and take 2 x 5mcgm am and 1 x 5 mcgm evening. 100 levo in the morning.

I have never been known for patience but I was determined to take things slowly after 8 years of being undertreated. arTistapple just go slowly and I hope when you look back you will be able to list the improvements. I sleep better, palpitations stopped, pulsatile tinnitus stopped and I have more energy. Good luck

[Kapuna]

This may be a strange question, it have you done a DNA test? Both my husband and I had ours done through Ancestry and found we both had the possibility of poor T3/T4 conversion. It is genetic and probably inherited.

[arTistapple in reply to Kapuna]

I have not bothered with the DNA test because my blood tests seem very clear. Conversion is poor. Other stuff from the DNA test I do not want confirmation of. I live in an area where the chief endo is against T3 and I don’t have the fight in me to use the DNA test to get a prescription. Hence I have not done it. If the T3 thing works out I will just pay for the prescription as it’s less hassle. However I will keep your suggestion in the back of my mind. Thank you.

[SlowDragon Administrator in reply to arTistapple]

if going to do Dio2 test with aim of getting T3 on NHS you would need to use Regenerus as it’s a recognised Genetic test

thyroiduk.org/deiodinase-2-...

regeneruslabs.com/products/...

Increasing numbers of patients are getting T3 prescribed on NHS

Number prescriptions increasing by approximately 500 every 2 months

openprescribing.net/analyse...

Searchable by ICB area or even by GP practice

[Lalatoot in reply to arTistapple]

My endo doesn't recognise the test as valid. However I did get NHS t3 as she did understand that my ft4 being at 60% and my ft3 at 17% with below range tsh signified poor conversion.

[Kapuna in reply to arTistapple]

I totally understand you’re not wanting to fight with your endo! I have been in a pitched battle over the TSH test. At my age (79), my mother was told she was hyper because her TSH was “too high” and her Levothyroxine was cut back to the point she became hypo. Her last years were miserable and I am not willing to live like that. I believe in quality of life over quantity. Fortunately I had an endocrinologist who suggested T3 (I lived in California) and that worked. Now I am in Hawaii and my endo here wants me to cut the T3 back even though my scores are within normal. So my fight goes on. Good luck with yours!

[arTistapple in reply to Kapuna]

Yup the whole getting the correct meds is just as stressing as having the illness in the first place. Quality over quantity (although they seem to be trying to deprive us of both). There just seems to be no respect for us thyroid patients. It seems to me it’s a petty power thing. It’s ludicrous if it was not so serious. Good luck with yours too Kapuna.

[arTistapple]

I will off course give this more thought when I have a bit more fight in me. Thank you so much SlowDragon.

[Hennerton]

I have been reading this thread and originally wrote to you regarding the infrared lamp. My heart goes out to you because I well remember my own battle with adding T3 and my private endocrinologist, who eventually told me in a very angry email to do as I pleased, as he had no further suggestions. Looking back, he was hopelessly unaware of how each body is so different and he worked on a one size fits all method that simply isn’t good enough but even if I had rudely told him that, he would never have believed me. We are very low in the endocrinologist’s pecking order. Basically they are making all their money from diabetes. Thyroid matters bore them and yield nothing of interest to most of them.

Once I realised I was on my own and before I discovered this site, I beavered away trying all manner of combinations of treatments and wasted lots of money on failures like NDT, which was definitely not for me,

I then saw a marvellous doctor, much loved by his patients, who sadly suffered a stroke and died and could treat me no more but I was by then on my own way, understanding my body. It is all a matter of time. Be strong and patient and trust in tiny doses of T3. This wonderful doctor had given me the chance to listen to my body and so I waited for its reactions and understood what to do. Slowly I improved and so will you. Frankly if there were more kind and knowledgeable endocrinologists, this site would not need to exist. What a disgrace to the NHS.