I'm hypothyroid 37 year old male. I'm on a mix of T4 and pure T3 (175 mcg T4, 20 mcg T3). I've started having more joint pain when I started experimenting with T3.
I know low thyroid causes joints to swell, causing pain, but can High thyroid cause it too? I don't remember these issues when I was on 200 mcg T4 only (however I didn't feel as good as I do now).
One of my theories is that I'm overdosing on T3, which might be causing exacerbation of joint pain. Does anyone have any experiences and suggestions around this?
I'll do a blood test later this week to get the exact details as far as the numbers go... But even then the numbers may mean different things to different bodies.
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I am not medically qualified but take T3 alone. I doubt T3 is causing the problem as we have millions of T3 receptor cells in our body, and brain and heart contain the most. 20mcg of T3 is approx equal to 80mcg of T4.
T3 is the active thyroid hormone and we have millions of T3 receptor cells but no T4 receptor cells.
I am not medically qualified but the more I reduced T4, the better I became
Listen to your body as that will let you know if the dose or hormones you take are doing their job, i.e. resolving your symptoms. Sometimes it could be the fillers/binders in the product you take that affects you.
I should know better than to blame the T3 because I'm very low in T3 on 88mcg despite having a high T4 and the recent switch to 75mcg is further reducing T3. I have to be overdosed on T4 just to start making it into the top 20% range in T3. With the reduction to 75mcg and half a barely functioning thyroid left I doubt 5mcg or even 10mcg of T3 is going to make up the difference. On DTE I had to take 120mg to get into the top 20% of T3. If it were low T4 I'd have facial swelling and carpal tunnel but the joint pain, aches and pains, and fatigue is definitely low T3. I've struggled with taking a lot at once but today took it with food a few times and that helped. I've had to change a few times due to fillers.
I’m on just t3. My frozen shoulders pain is coming back in both and has been for a while, now i have forearm and elbow pain i was told was Tennis Elbow by a GP in the family not officially . Going to have to stump up for more bloods to try to figure it out. Sorry that’s no help I’m reading about others trying to find out and feel better as we all are on here.
When we begin taking T3, and have symptoms, we can always increase dose slightly until we are symptom-free.
Dr John Lowe who, before his accidental death, stated that if we still have symptoms, a small increase every few weeks until symptoms are relieved was advised.
His patients only had one blood test for initial diagnosis and thereafter it was all about how the symptoms are being relieved with gradual increases in either NDT or T3. He would never prescribe levo.
He wrote to the BTA before his demise, but they ignored his communication.
Dr Lowe took 150mcg of T3 - in the middle of the night so that nothing could interfere with the uptake.
I am fortunate in that 25mcg has relieved my symptoms. I did take a higher dose but adjusted by taking account of "how I feel". I am fine now and have no clinical symptoms.
The BTA caused uproar on the TUK site when they withdrew bothT3 (due to expense) and then NDT despite it being the very first replacement hormones since 1892. Sometimes I wonder who patients can rely upon when some 'organisations' have 'experts' who I assume have never had the symptoms patients incur with their conditions so they work on 'theory' rather than listening to the patient.
I’m having a very similar issue and I think go with your gut instinct on this. I’ve been overdosing for a while now on NDT. I hadn’t realised it as I’ve been so busy but yes I can feel myself more upright and stretched and far less knee pain. Get your blood test done and you’ll know.
Taken together they are very high doses, which may be right for you but you need to monitor your blood levels of TSH Free T3 & free T4 together regularly and keep a symptom diary to figure it all out. I’d bet you are overmedicated and maybe causing functional testosterone deficiency through raised SHBG from all the thyroid going through your liver. So if you can, test your male sex hormone profile in the same 24 hr period as your thyroid blood test. There isn’t a reliable basis to equivalence of t3 and t4 as replacement, the body needs both in different places in different ways, there may not be a linear relationship for swapping one for the other and the presence of thyroid receptors to be able to utilise ft3 is only part of the picture, the system needs t4 because of the highly specific way it stores and transports and converts according to a multitude of feedback loops. Just chucking loads of t3 In The pot doesn’t make the best soup. I’d aim for physiological replacement which would be t3 at about 10% of your t4 dose (absorption losses of t4 effectively raise that percentage). Then see what your blood levels and symptoms are and adjust if necessary. Also split dose the t3 otherwise it’s too disruptive. You’re aiming for balance and smooth natural circadian levels of TSH &T3 &T4.
So how much T3 should I be taking using your 10% formula with T4 fixed at 175 mcg? Sorry not sure exactly how you mean to calculate it.. Is it literally 10% of 175 so 17.5 mcg of T3? I was going to lower my T3 to 15mcg (after my blood test).
I take a higher dose of T3 than doctors would like. have done so for years. When I moved to a new GP, in the interests of good relations I agreed to try reducing it slightly. Dry skin came back, ankles started to lock and hurt the way they used to in the 25+ years I was symptomatic but not diagnosed or treated.. Raised dose again and all fine. I have to do leg stretches for the rest of my life as my calf muscles contracted so much but T3 not guilty
Yes stiff painful ankles are my first signs of getting hypo and needing more t3, I am t3 only 75mcg at bedtime. 75mcg is fine for a sedentary life, if i wanted to be active i would need much more but then my blood tests would be way over and my endo would flip out. I developed serious joint pain after my thyroid removed, i was housebound, t3 massively improved all my symptoms but i still get joint pain im not sure full recovery is possible after tt, i was a competitive sports woman before TT. my strength, endurance and speed went almost over night.
you are the first other person I have heard of who had the locking ankles problem. I saw a series of doctors when I was about 20, spent a hot summer in foot to knee bandages, one doctor pronounced that my Achilles' tendons were too short and referred me to physio where I found that infra red lamps helped unlock the ankles. Over a few years I found using the infra red when they just would not unlock worked and I always had to wear socks in bed to keep them warm, wear a slight heel and rotate my ankles to free them before I put weight on them in the morning.
Once I was t3 only I remember the first day I woke up and walked to the kitchen, I walked I didn't hobble and shuffle like a 100 year old, I cried. I have no achilles response at all and of course once I started getting better and did more reading i found no achilles response was a way they use to diagnose hypothyroidism, also I was covered in bloated water retention and fat that you can't pinch (mucin) another 100% hypo sign, obvs drs are no longer taught any of this as the have tsh to go by (slaps head) I still sometimes get the metal rod ankles, usually winter I up my t3 for a week then drop back down, it seems to do the trick for me. I will remember the infra red next time X
I'd forgotten the puffy ankles! I was showing what I now understand were clear symptoms from the late 60s so they were not all that clued up then.And several other opportunities over the years to consider the thyroid as the problem were not taken.
Well 10% was a guesstimate and still on the high side but I was figuring that if you needed about 150 t4 15mcg t3 wasn’t too much of a drop initially. but I was figuring that your blood test results could suggest even less t3 was needed - the physiological ratio of a healthy thyroid output (which is what we are replacing) has been shown to be about 12:1 t4:t3 but it’s complicated and highly individual (for me - I currently take 2.5mcg t3 together with 37mcg t4 3 times a day which is about 8% of my absorbed t4 and may yet prove slightly too much t3 for me - I know all this from frequent blood tests including total dose and total & free t4 levels over many years). The theory is that the healthy thyroid gland produces 20% of total daily t3 requirements and that if you are given supra-physiological t4 replacement the body will make up the lost t3 but...... that ignores the questions over the physiological abnormalities of excess t4 and suppressed TSH to jack up free t3 levels and that if the body is evolved to fine tune itself with thyroidal t3 output capacity we should do something to facilitate that - if nothing else lack of capacity to deliver thyroidal t3 may be messing up the control mechanisms even if it’s not leaving us stricken by what looks like low free t3 on a blood test. Normal healthy individuals have lower t4 and higher t3 than many replacement thyroid hormone regimes give and for some theoretically treated hypothyroid patients that means perpetually out of balance thyroid related metabolism
I was on 150 T4 and 22 T3. Bloods were midrange FT4 and 60% range FT3 (last T4 dose 24 hours before the test, last T3 dose 12 hours as that, according to this forum the golden standard).
I had all the joint issues and energy crashes where I was fine a few days and then have some kind of episode and be left really weak and tired for a week.
So my theory was that my T4 was too low. (Earlier I took 200T4 with no T3 with bloods ~110% range FT4 and 40% range T3. The low FT3 pushed me to try T3.) So based on the 200 T4 results I've adjusted to 175 T4. This should get me to around 80% range FT4. But I do think I'll need to reduce T3 to at least 15, maybe even 10 at a later point depending on further tests and symptoms.
Thanks for confirming that essentially I'm too high and the symptoms are because of it. Previously, I thought being a bit high is not a problem, but obviously it is.
I developed (or at least it got much worse) bursitis in both shoulders, knee, hip, ankle and wrist pain as well as putting my back out almost once a month. As you can see it's getting critical.
It’s interesting isn’t it that too much t4, which people often talk about being almost inactive, can make us feel adverse effects.... I struggled with levothyroxine for years until I figured that it was that causing problems including similar things to what you describe. The solution does seem to be taking as little as possible levothyroxine to achieve ft4 of around 14-16 and then topping up the T3 if necessary (to about 4.6-4.8), splitting the levothyroxine as well as the liothyronine also makes a big difference ~ it reduces the single dose overdose side effects, one of which is excess t4 slowing down t3 conversion by conning the body into thinking there’s too much t4/t3 action when the total dose over 24HRS is actually ok. The healthy system never dumps an entire 24 hrs supply of free T4 all at once! As an aside I would also say that leaving longer than usual between thyroid hormone doses and blood tests is wrong wrong wrong, yes there will be a surge for an hour or so after a dose that would give an unhelpful blood test (another reason for split dosing into smaller more physiological amounts) but if we are on a replacement regime we want to see the blood level outcomes of our usual regime because that is our steady state condition, so far as we can get it. It’s also possible that testing when levels are dropping below the point we would have replaced the daily demand will cause TSH to fluctuate from where it was before we interrupted our daily replacement just to take a blood test!..... there’s no logic to it at all so if it’s a gold standard it’s fools gold
As I've mentioned, it seems that when I have roughly 50% T4 (16.6 with my labs in New Zealand), I need way too much T3 or I get side effects like energy crashes and joint pain.
As to splitting the doses. Yes, the thyroid gland releases the hormones smoothly, but I think it would be an extremely difficult protocol to follow to attempt to simulate that smoothness throughout the day. It would be nearly impossible to set each dose through the day so that it absorbs even 80% as well as another. You would have to time it e.g. one hour before a meal and 3 hours after. The meals would have to roughly be similar. You'd need to have the medication mix available throughout the day and reminders /timers set up. The day could be skiing on a mountain or having a strategy day out at work. Basically, I'd have structure my day all around the protocol. I think there would be such a high error rate that taking the meds in a controlled way in the morning 1 hour before breakfast would be superior medically and would allow the patient to experience life to its fullest.
However, I'm sure there are cases where the above protocol may be the only way to feel even remotely OK. In such cases the person is likely to be so disabled that they aren't skiing on mountains or attending long events etc. In such cases, even having a couple of hours feeling good might be a blessing and the protocol might be completely worth it.
I'm a pretty active and fit guy, so I fall into the first category where the protocol is likely to make my life miserable. So for now I'm staying with once a day approach.
I did think about a dose before bed, but again my dinner times and foods are so varied that my absorption would be wildly different. For example, the difference is huge between my Saturday - a heavy lunch with a couple of drinks in the evening VS a Monday - a late dinner of potatoes and Salmon...
In the future, I'm sure with nano technology a chip would be invented that releases T4 & T3 continuously into the bloodstream. All these hormone absorption and delivery issues solved.
Dr John Lowe was a scientist/researcher/doctor and his forte was T3. He himself took his dose in the middle of the night so that nothing interfered with its uptake. His dose was large as he was 'thyroid hormone resistant'.
Now that you've mentioned it yes, I have joint pain since starting T3. It may just coincidence given my age (64) but your post made me realise I didn't have any problem with joints or arthritis before starting T3 and neither of my parents nor brothers have this.
I find it incredibly difficult to fine tune my levo/lio combo. On 125 mcg levo and 20mcg lio, I'm over-replaced and start to feel very anxious, back hurts, ankle joints and wrist joints get sore and I have broken sleep. Yet reducing to 100 mcg levo and 20 mcg lio I have underactive thyroid symptoms, including fatigue. I reduced lio to 10mcg (5mcg taken twice a day) and that got rid of the anxiety symptoms, but not all the over-replaced feeling, so now going to try 112 mcg levo and 10mcg lio 🙄 Recent blood tests were showing TSH as undetectable, free T3 and free T4 top of the range but I was feeling over-replaced at that point, so I need to reduce slightly! It's difficult to get it exactly right, then you have issues like if you lose or put on weight, or absorption is reduced due to another issue, or even it getting colder - which throws my levels out. I do think it's worth sticking to and trying to figure out. My GP wanted to take me off T3 cos its so difficult to get it right - but I said HELL NO! The difference in quality of life is unbelievable and I have way more energy to actually do things
Hmm, I have been taking natural thyrxin for around 4 years. Around two years ago, I noticed that I was getting dry skin, and pains in my legs. It all sounded like low thyriod but my blood tests we coming back with a supressed TSH and all the other markers as high. Ie FT4, T3, etc.I was only taking 1/4 of a grain with 75 MCR of T4. The leg pains got so bad I was unable to walk no more that 25 m with out a break. All the muscles in my rump area were so painful I could not sit. I have reverted 100 MCr of T4 and It takes me ages to wake up in the morning around 3 hours but I can walk. One thing that is strange, i am having night sweats, which i have never had before. its a mine field.
MY T3 was reduced back in May from 20 mcg to 10 mcg, but still on 200 mcg of T4, which I call my Natural dose (Always been on it as long as I can remember since a child). I have to say, I do not get as much joint pain since the reduction, but I have recently been diagnosed with Rheumatoid arthritis and Osteoarthritis in my hands and feet. (not on medication yet for that) - but I think the latest diagnosis is coincidental and going on before the reduction of the T3 medication.
You have to remember that your body can only utilise t3. Your body would normally convert t4 into t3 to make your body work. The fact you have been given both probably means your body can’t convert properly
Think of t4 as a filing cabinet and when your body needs to do something it takes a bit out of the cabinet and converts it. Some people can’t convert so are given a special file (T3) that converts it. Your body may not need so much T3 to work but I’ve never heard of either making joints get inflamed. By feeling better because your thyroid is functioning better you may be doing too much using muscles harder than previously. You need to find out why you were given T3 and get them to check your T3, T4 and TSH levels each time you have a blood test
I don't take T4 at all. It made me very ill and very symptomatic. In fact I was much worse on it than before I diagnosed myself - one day after GP told me I had no problems with my blood tests. Unfortunately he didn't seem to notice the TSH was was 99.9. All symptoms resolved with T3. I had severe palpitations on levothyroxine and even the cardiologist couldn't figure it out and was thinking of putting an implant in my heart but, thankfully, T3 was added to T4 initially and then went onto T3 only and I've had no problems since.
YES! Sorry, haven’t read all the comments above but I had joint pain with T4/T3. It was the T4 causing the problem, almost as if too much made my bones ache.
Are you taking any Vitamin D supplements? It's been a dreadful November and we're all locked down so are you perhaps Vitamin D defficient? You could ask for a Vitamin D test, low vitamin D certainly causes joint pain so does low B12, too much T3 doesn't do that, more likely to give you palpitations if anything,, I would say it's just got much colder and damper and you've got joint pain... Vitamin D below the optimal 80 mark is probably to blame
I have had increasing joint pain since taking T3 but, after taking it for about 14 weeks, it suddenly dawned on me that the joint pain had increased since raising my dose of T3 to 12.5 mcg. I was taking Uni Pharma. I stopped taking it and tried Mexican T3 - extreme joint pain was replaced with headaches, diarrhoea, nausea and swollen ankles. I have since stopped all T3 and gone back to Levo only for the time being until my Turkish T3 arrives. If that doesn’t work then the only avenue left for me is NDT as I’ve never been well on Levo and can’t get T3 on NHS. It’s absolutely ridiculous that my NHS Endo recognises that I need T3 but can’t prescribe it.😡
I think the simple answer is yes both too high and too low thyroid hormone replacement can lead to similar symptoms especially in muscles. I never stay in balance for long (nice when I am) and find myself tweaking my T4 levels back and forth mainly with the seasons and such. I am a big believer in Vitamin D too as that always seems to help. If I am too higher level I tend to also get insomnia/sleep apnoea and a racy or spaced out feeling so that helps me identify which way I have gone.
My non expert opinion might be to look at tweaking T4 levels before T3 but I have never taken T3 and breaking down T3 into repeated smaller doses if not already.
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im not sure full recovery is possible after tt, i was a competitive sports woman before TT. my strength, endurance and speed went almost over night.
help with blood results
How much T3,t4 body still produce when on NDT?
Bad Headaches with T3?
Chest pain with even small amount of T3?
Muscle/Joint Pain
