T3 side effects?

[naturegirl3434]

I have been on 5mcg T3 for 2 weeks in two split doses. I raised each dose a 1/4 and have been on 7.5mcg for 1 week. I noticed increased muscle pain in legs, hips, and neck and severe stiffness in lower extremities to the point that I am having trouble walking. I had this symptom before when my T4 was high. When we lowered the T4 it went away or at least got a lot better. I am currently on 50mcg of T4 and do labs in 2 weeks. Could this be a side effect of T3 or something that will settle and get better when I level out in a few weeks. Anybody experience this? It almost feels like my legs weigh 100 pounds each. I don't know what to do. Thanks.

[jamesal0]

I have to be careful with T3 in NDT, if I take too much it cranks up my metabolism and attacks my tendons and smaller joints. I didn't understand it at first and thought I had arthritis for about a year. 3 grains (9 mcg (T3) per one grain (60 mg)) will do it to me. These days I take 50mcg of Thyroxin and 60mg of NDT at 7am and then 30 or 60 mg NDT depending on how I'm feeling about 3pm and what I'm doing. Feel cold - take more, going for a 2km swim take more, laying around the house take less etc. If I get heart palpitations, I've taken too much, back off for a few days.

James

[Sus64 in reply to jamesal0]

Would you know in what way the T3 "attacks" tendons and joints? I am having a terrible time with hips and knees and an MRI shows bursitis and tendinosis. Although this problem was developing before I even began NDT, so maybe not connected. My other question would be, when you take your last dose of NDT at 3pm, what time do you do your blood labs - 12 or 24 hour window?

[McPammy]

You are the first person on here that I’ve read that has a similar issue to myself!!

I too have real problems with my legs. They get so heavy to the point that I can’t walk. For 11 years on Levothyroxine they were ok. The past year I’ve hit a brick wall. My legs don’t work properly anymore. It started when my T4 Levothyroxine was increased by my GP last March. They only checked T4 and TSH. My T4 was already high and TSH raised so they increased Levothyroxine. 6 weeks later I collapsed and was hospitalised. My T4 was too high now my TSH now very low but my T3 was also very low. So my TSH saying reduce T4 and increase T3. As NHS refused me T3 I have struggled for a year. However the minute I reduce my T4 my symptoms get better but not better enough to live normally. I even reluctantly stopped all together for a week and I felt great but as soon as reinstated Levothyroxine I was literally on the floor. I went private and the Endocrinologist has confirmed I’m not converting T4 to T3 very well. My T3 medication is due next week and I’m to take 5mcg twice a day like yourself. I’m very sorry to hear you’re having trouble in taking your T3 and your legs are giving you problems again.

Have you had you cortisol checked. Mine keeps going very low. Also have you had B12, D, Ferritin and Folate checked. These are really important to be optimal I believe.

Do you need to increase your T3 as my Endocrinologist said 5mcg twice a day for one month and then bloods to be checked before any increase if any. He is the UK’s leading Endocrine clinician. He also put me in liquid thyroxine. I also split my dose with T4. Liquid makes it so easy and accurate to split. I find doing the split helps my legs more for some reason. Your body doesn’t make T4 in one hit it’s throughout the day so ok to split as long as you steer clear of food etc. This just might help you. From what you’re saying I think you’ve increased too soon as your body is sending you a strong message to let you know.

I’m starting my T3 next week as soon as it arrives. I would find it really good and interesting to keep in touch and see if we could possibly help each other out here.

What do you think?

If you want you could PM me.

I hope you are ok today so far. Yesterday I could hardly walk.

Thank you for your post and sharing your symptoms I really do hope the T3 works for you. Maybe just take it more slowly.

Pam

[jamesal0 in reply to McPammy]

Yes I get the numb feet on Thyroxin too (I think it's T4 pooling, where the lack of conversion leads to a build up of T4 which affects the nerves in hands and feet), on anything more than 100mcg perday for about 5 days. I loose all temperature sensation in the feet. Yet at 100mcg I still wasn't getting a decent TSH . I found NDT is allot better, not perfect, but - I can take 3 grains or equivalent to 150mcg Thyroxin per day without loosing sensation in the feet. But at these levels I run into other issues with tendons and joints, I'm compromising on 50mcg thyroxin and 90mg NDT currently.

[naturegirl3434 in reply to jamesal0]

Thanks for the reply. I too thought of it as being related to T4 pooling because when my T4 was high and they lowered it the problem went away. Then I start the T3 and it comes back. This stuff is so complicated it's driving me crazy.

[naturegirl3434 in reply to McPammy]

Yes, I would love to keep in touch. I decided yesterday to drop my dose back down to 5mcg in two doses and keep with that until I get my labs done in 2 weeks. I am changing doctors soon so I have to wait to get all of the other labs: cortisol, b12, folate etc. My Vitamin D is low and I take a supplement. Yesterday I could barely walk too but today I am a little better today. Thanks so much for reaching out. Maybe we can figure it out together.

[McPammy in reply to naturegirl3434]

Yes I am reaching out. I think you need to take it slow. Good that you dropped your T3 dose back to 5mcg. I’m on 75mcg liquid Levothyroxine. It’s easy for me to split my dose with Levothyroxine as in a syringe. It helps my legs. I’m really interested to see if T3 helps me and how slow I need to go too.

I will be taking 5mcg twice a day also at first. I don’t know why but some days I feel nearly ok recently. Today I wasn’t too bad but yest awful. Maybe the low T4 to T3 has something to do with it.

I hope I can help, even just a little.

Where abouts are you. Are you in the UK or not. I’m in UK Chester. Hope you’re improvement continues. It’s tempting to increase.... dont until after your next tests.

Keep intouch if you’d like to share progress .

Take care

Pamela

[naturegirl3434 in reply to McPammy]

I am in the United States. I was given no guidance on how to start taking the T3. The doctor told me to come home and take 10mcg right off the bat every day. I was scared because he had just over-medicated me with levothyroxine and made me go hyperthyroid. I lowered my own dose of T4 down over a 2 month period (too quickly) and then re-did labs. It showed I was low on T3 so he started me on it. I have not tolerated it well but understand my labs for both T3 and T4 are low and my body needs more time to adjust the levels. I have tried to raise my dose of 5mcg daily a few times now and haven't been able to tolerate the symptoms. I take it in two doses. Thanks for being here

[McPammy in reply to naturegirl3434]

My Dr also over medicated me on T4. That’s when my legs started to collapse on me. Even when I ended up in hospital the Endocrinologist didn’t recognise that I needed to lower my T4 and my T3 was barely there. I didn’t know my blood results at the time and couldn’t understand what on Earth was up with my legs they were so weak. I asked for my blood tests not really knowing what I was looking for. For 11 years I just trusted my Drs. I then quickly realised I was T4 over medicated and reduced it. Within 2 days my legs had improved! But still not great.

Here in the UK Drs on NHS will not give you T3 as there has been an incredible price hike. So since last May I’ve been battling to get a Dr to diagnose my T3 situation. I’ve had the worst year if my life for sure. Been sent down wrong medical routes by Endocrinologist to neurological which took months then back to Endocrinologist. I went private last Dec and only just recently it’s been confirmed privately that I have a T4 to T3 conversion issue and finally privately have been prescribed T3 which I had to get from Germany. In UK it costs £900 a month in Germany £30 a month!! Go figure!! I’ve ordered a years supply just in case things go tits up with Brexit.

I’m really unsure why after 11 years on Levothyroxine my legs have suddenly got this problem. Is there anything you can think of that’s happened with you? I also now found out I have B12 and ferritin deficiency. So on meds now for them. You mentioned vit D deficiency, can you get in the sun where you are. Just 40mins daily will certainly help.

No chance of that in UK especially this time of year.

Sometimes I think I may have had this T3 problem for 12 years, all time since Hashimoto diagnosis and just been getting slowly worse. And trying to diet and lose weight. I use to be ok but since Hashimotos I struggle and always conscious of it. I had a brilliant job as a manger for Rolls-Royce. Last year I had to leave due to this terrible year I’ve had. I’m gutted. I guess health is far more important.

Some Drs don’t know what they are doing and don’t realise the impact on Endocrine patients. It can be devastating and life changing for individuals being given wrong medication or doses.

Definitely get your vitamins checked as soon as you can change Dr.

This is a brilliant site. Even if we can’t find the answer it is good to know you are not alone and have plenty of support. I’ll keep you posted on my T3 introduction which should be this week. I do feel apprehensive in case my legs get worse but hoping for the opposite reaction.

Take care for now

Pam

[naturegirl3434 in reply to McPammy]

Wow! I hate to hear the horrible time you've had but it does feel good to know I am not alone. I have trouble converting T4 to T3 also and have been this way since I was diagnosed with Hashimotos thyroiditis 20 years ago. I have only been on Levothyroxine for past 18 years no T3 (drs wouldn't prescribe it.) The problem with my legs started happening about 10 years ago. I have a few things on my end that happened that may or may not be related to it. 5 years ago I had a 3 level cervical spine surgery (I had disks c5,c6, and c7 replaced in my neck,) due to them flattening my spinal cord and paralyzing me. I always thought after the surgery my legs would get better but they didn't (I have been checked for nerve damage too and have none.) The only time my legs got better was when I went hyperthyroid (the dr raised my T4 when it didn't need to be) and I lowered it down from 125mcg to 50mcg over a few month period. After my first week of being on 50mcg my legs were so much better. It was like I had been over-medicated for years. The other significant change in my life was that after the neck surgery I decided to quit all the pills I had become dependent on (Benzodiazepine: Ativan I was on once at night for over 10 years, Flexeril for 5 years, and Amitriptyline: anti-depressant, and Tramadol for pain.) I have been off of the Benzo for 13 months and the rest of it I have been off of for about 7 months. About 6 months after I quit everything is when my thyroid labs started bouncing all over screwing up. It was like the pills I was taking were masking my symptoms and when I quit them it uncovered the mess my body was really in. Sorry for the novel. Enjoy the read.

Take care

[McPammy in reply to naturegirl3434]

Oh my goodness. What a terrible time you’ve had. I couldn’t clearly make out why you needed neck surgery. Are you saying they messed up in surgery. Then with you going hyperthyroid and possibly was for years then things got better after you reduced from 125mcg to 50mcg sounds like you could have been over medicated for years. Can you get hold of your blood tests from those years to find out if you were over medicated. If for nothing else but just to know what happened. Just to prove it to yourself at least. My legs definitely went wrong when over medicated. I had been over medicated during the previous 11 years on a few occasions but my legs were ok then maybe the over medication was brief. Something just went terribly wrong this time. It was like every time I took Levothyroxine the brakes in my body would slam on. I could feel it coming on in my chest first then my legs would be tingling next thing if I tried to walk I couldn’t. Or clinging to door frames and handles or kitchen worktops etc. They would collapse beneath me. I had to lay down all day for months last year. It was terrifying at times.

I was put on Ativan when I was 24. A long time ago. I had a problem with sleep. My stupid Dr gave me Ativan. I was quickly addicted. It took 6 years and a lot of determination and running 40 miles a week to get rid of them out my body. It was a struggle but I did it. I’m convinced Levothyroxine is the culprit now. If I/we take our daily dose and it’s not getting converted where is it going in our bodies. Is it that causing the weakness, I just don’t know. And if we introduce T3 with same amount T4 again where is the T4 going if not being converted.

I’m so sorry to hear of the time you’ve had/having.

Are you feeling any better with lowering T3 back to 5mcg twice a day. I think you said you are in 50mcg Levothyroxine also. Your next bloods will be interesting. Why don’t you keep a diary or maybe you already do. I’ve started to write in my phone how I am and what meds I’ve taken daily. I’ve asked for 2 blood forms from my GP today. I like to keep them in case I’m very bad then I go that same day for a blood test. Usually there is something wrong. Sometimes it’s my cortisol being quite low. But I’m not sure if it’s balancing with low T3. That old saying ‘ your hormones are out of balance’

Keep positive and keep low and slow until blood tests are next done.

Pam

[naturegirl3434 in reply to McPammy]

Oh my gosh McPammy: You should read this article I just found. It sounds like what might be happening to us with the T4 and our legs and the cortisol?

stopthethyroidmadness.com/p...

[McPammy in reply to naturegirl3434]

Hi,

I just had a read. Well done with your research ! I have heard of pooling. Maybe this is where the T4 is going that’s not converted.

It talks a lot about high T3 or high Cortisol. I have low T3 and low cortisol with high T4. So I’m not sure if it’s the same for me. I’m getting my bloods done tomorrow morning for TSH T4 T3 and cortisol. I want to check my levels just before I start with the T3. I should have results by Wed.

I’m going to look deeper into this subject. Maybe we could ask on here if anyone suffering from pooling to see if our situations are similar.

I read it again in the morning I’m just off to bed.

Have a good day

Pamela

[SlowDragon Administrator]

There's no point testing levels until been on constant dose for 6-8 weeks

You probably increased too soon

Generally starting on 2 x 5mcg and hold at this until tested 6-8 weeks later

I find it's common to feel worse 4-7 weeks after increase in dose. It's extremely tempting to change dose again at that point. But we need to wait and let levels all rebalance

[naturegirl3434 in reply to SlowDragon]

Thanks. I dropped my dose back down to 5mcg in two doses and I will stick with this until labs are done.

[DebTex]

Hi, just wanted to say that you and I are taking almost the exact meds and dosage right now, mine aren’t working out and I posted my lab results on here and everyone told me I’m under medicated but I’m looking to try something else, and to find a new Dr. instead of increasing because I am having too much heart racing and palpitations on the T3. I’ve had more stiffness like you too, but I was thinking it was from being undermedicated, I’m sorry I don’t have any advice, the good people on this forum will, just wanted to let you know that you aren’t alone, I hope that you can get straightened out soon.

[McPammy in reply to DebTex]

Sometimes being under or over medicated can give you similar symptoms. Don’t increase T3 until you’ve had your bloods done. It’s tempting, please wait to be sure.