Does Thyroxin damage the joints?

[renawaltdr]

Hello, I have during 1 1/2 years slowly upped to 168 mcg Novothyral ( T4/T3 combo, 5:1) and notice that my knees have deteriorated greatly since last year‘s hike. Overall, I feel much better than the last 15 years, but joint and muscle pain seem not to go away. FT4 and FT3 are both at the upper end of the range. My idea is to add T3 and reduce T4- I think I do not need so much T4? What do you think?

[greygoose]

Pretty sure thyroxin doesn't damage joints. Why would it? It's the thyroid hormone T4 that your thyroid would make naturally if it could. And, by the sound of it, you're isn't over-range, so I doubt it's that.

Have you had your nutrients tested: vit D, vit B12, folate, ferritin? Low vit D can cause joint and muscle pains.

I think I do not need so much T4?

Why do you think that?

[renawaltdr in reply to greygoose]

Dear Gregoire, thank you for your reply. My ferritin was 198. (35...140), 25-OH-D3 was 51 (30...96 ng/ml), 1,25 DOH-D3 was52(35...80 pg/ml). I have no recent values for B12 and Folate, but I substitute them every 2...3 days. I take 5000 IU D3 dayly, plus Magnesium and K2.

I had read a post where tight tendons were related to T4 and wanted to know if this was a common phenomenon. I also developed a more or less constant headache and read about this in posts also as related to T4. Hence my idea to try to reduce T4 and adding more T3- not a good idea?

[greygoose in reply to renawaltdr]

Gregoire? lol

OK, so your D3 was/is low. Could be the problem. But, have you tried taking zinc?

I've never heard anything about tight tendons, never heard anyone complaining of that before, so I really don't know about that. But, certainly, if you feel that T4 is not for you, it is a good idea to try and take less - or none at all. I take T3 only. But, have you ever been on T4 only, and do you know how well you convert? Might be tricky doing the switch if you don't know that.

[renawaltdr in reply to greygoose]

Thank you Greygoose ( I controlled the spelling now),

What would be a good D3 level?

I was on T4 only for many years from 1996, doing initially well but getting worse and worse ( nobody knew what was the matter.. the usual drama) until with the help of books and thyroidUK I found out my conversion had obviously deteriorated and seems to continue to do so. I had to up my dose for the last 1,5 years slowly and now I think that in order to get enough T3 out of the Novothyral the T4 gets higher than necessary. So by your experience it would not hurt to reduce Novothyral a bit (25 mcg) and add some T3? At least I can buy that by myself, being a dentist.

And yes, I do take zinc as well, apart from the Magnesium. I learned a lot from this forum. Thank you all so much.

[greygoose in reply to renawaltdr]

You can take magnesium and zinc together. It's iron that has to be two hours apart from everything - and four hours from thyroid hormone.

I used to take a fixed T4/T3 combo, and I didn't like it at all! Far too much T4.

But, do you know exactly how bad your conversion was? And, what exactly are your FT3 numbers now: result and range? There's a limit to how much T3 you add, but if you're a very poor converter, probably not much limit to how much T4 you can cut out. Might it not be better to stop the Novothyral altogether, and go onto seperate T4 and T3 doses?

[renawaltdr in reply to greygoose]

Dear Greygoose, thank you very much. I have two results:

From June: fT3 6,7 (3,1...6,8 pmol/l)

fT4 1,7 (0,9....1,7 ng/dl)

From August: fT3. 8,5

fT4. 1,7. ( Same ranges)

The latter probably with less than 24/12 hrs waiting time since I had not to wait in the office as long as usual).

I am very sensitive to exceeding the hours between taking the meds, I then get stress reactions ( strong heartbeat, sweats, arrhythmia, headache) so I am a bit afraid to leave T4 out completely. Have you any ideas how I could proceed?

At the moment I take 100 mcg NT at 3 hrs in the nights and 68,5 mcg NT at three pm. With physical activity I need to take 5 or 2x5 mcg Thybon extra.

Regards, Renate

[greygoose in reply to renawaltdr]

The latter probably with less than 24/12 hrs waiting time since I had not to wait in the office as long as usual).

I'm not sure what you're saying here. With Novothyral, as it contains both T4 and T3, you need to leave a gap of 8 - 12 hours between the last dose and the blood draw.

If you left 24 hours, then you are very over-medicated, and it might be a good idea to reduce your Novothyral by 1/4 tablet and see if things improve.

[renawaltdr in reply to greygoose]

No, I intended to leave 12 hrs but it was about 10 hrs in the end.

[greygoose in reply to renawaltdr]

OK! Well, 10 hours is fine.

So, if I were you, I would start by reducing the Novothyral by 1/4 tablet, anyway - no more than that at a time. See how you feel, and if you feel ok - no extra or exacerbation of symptoms - then reduce by another 1/4 tablet, and add in 25 mcg levo. Hold for six weeks and retest and see what the tests say, and how you feel.

This is just guess-work, you understand. It's not something I've ever done. I went from Euthyral (T4+T3) to NDT, so not quite the same thing.

[renawaltdr in reply to greygoose]

Thank you. I have no idea what could help and just have to try. Why did you change to NDT? It is something I also consider.

[greygoose in reply to renawaltdr]

I changed because I read so much about it and how wonderful it was! It wasn't wonderful for me! It made me very ill. And, I think that part of it was due to there being too much T4 in it. I need high levels of T3, and even on 6 grains I wasn't getting enough. I'm on T3 only, now, 75 mcg.

[renawaltdr in reply to greygoose]

Dear Greygoose, I am sorry that NDT made you sick. I didn‘t know that could happen.

For me, simply reducing Novothyral didn‘t work, main symptoms increased. I will reduce NT by 25 mcg and add 5 mcg T3 for a while, then may be repeat that and after 2months or so have a test. I will not add T4.

Thank you for your patience and help.

Regards, Renate

[greygoose in reply to renawaltdr]

NDT doesn't suit eveyone, anymore than levo does.

Yes, sorry, I got confused, I meant to say 5 mcg T3. Sorry.

[Lora7again]

One of my Aunts is in her 70s has just had her knee joint replaced and she has never taken thyroxine. She thinks it is because she has been a shop worker most of her working life and spent a lot of the time standing or bending down ... so wear and tear. Just to add my husband has knee pain and he used to be a long distance runner and would run about 20 miles a week and take part in road races as a hobby. He no longer does this now he is in his 60s and has painful knees.

[humanbean in reply to Lora7again]

Your husband sounds like mine. My husband has got no obvious thyroid problems. But he uses an exercise bike quite strenuously several times a week because he finds it helps with his asthma. His knees are absolutely knackered now but he still uses the bike. The only thing that helps is keeping his vitamin D as close to optimal as he can.

[annnsandell]

There is a theory that over medication can cause reduced bone density but assuming you do not have injuries, is this more likely to be wearing of the knee joints or even arthritus? How old are you? Knee x-rays will show wear and damage.

[renawaltdr in reply to annnsandell]

Thank you. I am 64 and afraid you are right.

[silverfox7]

I’ve been a member of this group for quite a time and try to read daily but I’ve never come across a link between tight tendons and T4 so I’m thinking it may just be a thought from one of our members rather than a certainty. I feel that if true we would be more aware of it happening.

[penny in reply to silverfox7]

I’m thinking, in a vague way, that I was reading a comment from the late, great Dr Lowe about lack of T3 and hence APT. There’s a link there, as energy (APT) is needed for muscles to stretch, not contract, so those with low T3/APT have tight muscles as they are in constant contraction. Ligaments join bone to bone; tendons join muscle to bone.

[vocalEK in reply to penny]

What is APT? I found 28 things it might mean,

acronymfinder.com/Science-a...

but none of them fit this particular context.

[penny in reply to vocalEK]

Hi VocalEK, my apologies, I transposed the letters; it is ATP.

Adenosine triphosphate (ATP) is a nucleotide used in cells as a coenzyme. It is often called the "molecular unit of currency": ATP transports chemical energy within cells for metabolism. Every cell uses ATP for energy. It consists of a base (adenine) and three phosphate groups.

[nagasakih2o]

My two penneth - I'm an avid gym goer so know my body well.

Levo caused me terrible joint and muscular pain. I went through a phase 12 months ago where I couldn't run; it was like my knee joints were grinding. I knew exactly what it was due to never experiencing it on NDT. I proved it by stopping and it went away. I was back up to 5 mile treadmill runs within 4 weeks. BTW, I convert T4-T3 just fine.

Due to the NP THYROID re-formulation junk I'm now back on Levo (not by choice) and guess what, pains everywhere. It's literally poison to me.

If we ever get an NDT that works, I will never touch levo again.

If in doubt, stop it for a couple if weeks and rule it out!

[renawaltdr in reply to nagasakih2o]

Thank you so much! That is very helpful for me. Yes my knees seem to be grinding! I will try to get some NDT and Test it for some weeks.

Regards, Renate

[Meanbeannyc in reply to nagasakih2o]

Why don’t u just add T3 to levo?

[Jocelin]

Great to read all these various thoughts! It sure is a subject that in my opinion needs much more investigation, so thanks renawaltdr, for posting your question. I am not able to give a useful reaction. But I do have doubts also. I have hypothyroidism about 30 years now, and have diabetes type 1 for 40 years now. A few years after getting hypothyroid I did get irritated knee tendons, which never went away. Later during the years I developed complaints which were diagnosed as RSI, trigger finger, Dupuytren syndrome, carpal tunnel syndrome, light form of Raynaud syndrome, osteoarthritis and frozen shoulder. I had lots of tests in 2018 and 2019 but did not get a 'satisfying' answer to why I developed all these mobility problems and also had doubts about all these 'separate diagnoses' that they weren't even able to confirm with all imaging material. I ended up in a consult with a reumatologist/immunologist at a universitary hospital and he simply told me I had to accept that it is all a result of glycation of connective tissue due to the longlasting diabetes, the so called condition 'Limited Joint Mobility' . It was very confronting, because I always have taken every effort to regulate my blood sugars as good as possible and my internist always complimented me by saying I gave such good example. Still I find it difficult to believe that all this is a complication of my diabetes. Of course there is a huge chance it plays a significant role in my complete physical condition and my therefore limited possibility to stay healthy. But I am sure that also the levo (and the liothyronine) that I use, are not completely replacing the own thyroid hormones and could therefore account for inducing such things as joint problems. Just as a lack of vitamin D could, or a lack of vitamin K, etcetera. I hope that it gets more attention in the medicatl world. And thanks also to nagasaki2o, for sharing your experience. Food for thought for me also.

[renawaltdr in reply to Jocelin]

Thank you Jocelin for your interesting report! When I was undermedicated thyroid-wise, unfortunately for many years, I also developed frozen shoulder both sides , which was very physiotherapy-resistant and stayed endlessly, carpal tunnel syndrome, and trigger fingers which I still have. I am not diabetic; my mother was so maybe a genetic weakness.

[DM1971]

I was diagnosed with Hashi’s approx 2.5 years ago, since then my symptoms have got worse since I started taking levo. Originally fatigue, insomnia and digestive issues but 6 months in knee/hip joint pain and enthesitis (inflammation) of the hamstrings with no obvious cause despite variety of tests / MRI.

I don’t believe I have been sufficiently medicated and have just started a T4/T3 trial with an NHS Endo, so not sure if it’s the levo that’s caused the issues or the fact that I haven’t converted T4 well so hypo got worse ? Of course NHS didn’t test T3 when I was first diagnosed so I have no baseline from which to judge, and didn’t have this forum back then. I think I read somewhere that your own thyroid hormone production decreases once you take levo ??

I’m really interested to understand others experiences around these symptoms, I’m hoping for me the addition of T3 will improve this but early days yet.

[Widawake]

I have been having rapidly worsening joint and muscLe symptoms, painful spasms cramps etc. Giving up gluten recently has given a noticeable improvement. It has also improved my mental health

[renawaltdr in reply to Widawake]

Thank you. I am gluten free also for about two years. But it did not help with the joints, unfortunately.

[Widawake in reply to renawaltdr]

Have you tried flexo seq?

[renawaltdr in reply to Widawake]

Thank you. What is it? I don‘t know it.

[Widawake in reply to Widawake]

Google it and read what people say about it. It seems to have helped me but took a couple of weeks to kick in. It is available over the counter at chemists. Very expensive but worth it for the relief flexiseq is the brand name

[nagasakih2o]

Gluten free also here with healthy ranges of B12 and D3+K2 due to daily supplementation.

None of the above helped with Joint/muscle issues.

I do genuinely believe that synthetic Levo is utilized/processed by the body differently to natural NDT.

I can see noticeable changes, I.E. Veins especially in the sides of my head become prominent on Levo. I feel head pressure. If i drink alcohol it kicks off an headache. I don't get any of this on NDT.

[DM1971 in reply to nagasakih2o]

I have been gluten free for 6 months and during that time went dairy free too for about 2 of those but can’t say I noticed any difference for either. Started eating dairy a few weeks ago and today started eating gluten, went all out sandwich on proper bread, donut and 2 beers 😄 Only time will tell if it makes any difference.

[jamesal0]

Hi Renawaltdr

Thyroid meds don't in themselves damage the joints. But taking too much causes joint/tendon/foot sole/fingertip/rib end pain. This is particularly so with T3 drugs. I would just optimize down for a few weeks and see if the pain goes away. It's a balance between feeling good, body temp, energy levels and pain levels. The only other thing old men's like me need is B12 and Testosterone in upper range. I take prescribed sups for both.

regards

James

[Sparklegrrl]

When my Vitamin D levels where insufficient I was getting a lot of joint pain - flare ups long term injuries and new joint pain. I've been supplementing since i found out my levels were low and it has made a lot of difference to my pain levels. The new joint pain I was having had pretty much gone, and the pain from the long term injuries is less frequent and not as bad when I have it.

[renawaltdr in reply to Sparklegrrl]

Thank you Sparklegrrl! I think this is a thing I will immediately tackle. How are your Vit.D3- Levels when you feel well? Mine was not as brilliant as I thought after frequent sunbathing and taking 5000 IU Vit. D3 /day through the summer.(51 ng/ml, Range 30...80). It is about 125 mmol/l.

I will start with 10000IU for two months and then continue with 7500IU/d.

Regards, Renate

[Sparklegrrl]

I'm not sure what mine are right now but my last test in August was up to 73 nmol - it was 30.6 at it's lowest. I'm trying to get mine up some more - the Vitamin D Society recommends between 100 - 150 nmol. Once I was out of the insufficient category i started to notice a difference in my joint issues, and am hoping that will continue as I get my levels up further.