Do you feel miserable getting off thyroxine, sw... - Thyroid UK

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Do you feel miserable getting off thyroxine, switching to cytomel only?

36 Replies

I would like to know, getting off thyroxine to cytomel causes problems? I added a picture below, it shows labs on cytomel 25 mcg only, it’s interesting my tsh went up. I recently added a new lab work, which shows my labs on cytomel 5mcg, showing tsh is 0.635. Hypothetically, it could mean just need to increase cytomel to 10mcg and my free t3 should go up.

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36 Replies

I’m getting off levothyroxine, started taking cytomel, as far as the withdrawal from the levothyroxine. By stopping levothyroxine, does it cause a significant bad withdrawal at first, since the body has no t4 and only t3.

Greekchick profile image
Greekchick in reply to

Hello! I would not stop levo abruptly - I would gradually replace your levo with the equivalent Cytomel - and see how you feel. Your body will not like any abrupt change. The conversion is 25 mcg levo to 5 mcg Cytomel . Hope this helps.

All the best - I am grappling with a similar situation but will be staying on some levo and supplementing with Cytomel because I don’t convert T4.

This dosing situation is not easy!!! Hoping you feel better soon.

in reply to Greekchick

Yes I had done perfectly on levothyroxine, as far as conversion. I had a friend recommend cytomel, from the start it was great. After sometime on cytomel, everything came crashing down, it seemed to effect my conversion. At any dose of levothyroxine and cytomel together, my moods are bad, like it’s severe depression. I’m trying to figure it out, because I have been immobile awhile.

Greekchick profile image
Greekchick in reply to

This is understandable - when you added Cytomel, your body became accustomed to not converting your T4 to T3 by itself because the medication was doing it for you instead - and so it disrupted your natural ability to convert. In my case, I wasn’t converting to begin with - so I had nothing to disrupt. May I ask why you added Cytomel if you were doing well on levo? Or did I misunderstand and did you need the Cytomel?

I’m not sure what the answer to your problem is here - let me sleep on it - I’m in Canada and its 10:30 pm here and I’m running out of steam - I am 15 weeks post TT. In the meantime, one of our experts, like helvella or diogenes may have an answer to this question tomorrow.

Please know that I am not a doctor. I always tell people here to check with a medical professional .

One possibility i can think of is that you gradually wean off the Cytomel and replace it with levo if you were doing well on levo alone. This would allow your body to regain its ability to convert. But again, I need to think about that. It will be uncomfortable for awhile till your body adjusts. That will be true either way.

Hoping you feel better and so sorry you are having this issue. It’s not fun trying to figure out what to do and in what combination. Thyroid is complicated! All the best.

in reply to Greekchick

Yeah it’s a thyroid problems are complex, by the way I am in the States. We might be in similar time zones. Yeah it could be that I might have lost my ability to convert. I had a friend, who suggested it based on a better energy and less hypothyroid symptoms. I can tell you on levothyroxine, it has been challenging. I see my doctor on Wednesday, I hope she can answer my questions.

Greekchick profile image
Greekchick in reply to

I understand exactly how you feel. Challenging doesn’t begin to describe it. I’d love to know what your endo says. Please update! I’m on the East Coast BTW. All the best.

Angel_of_the_North profile image
Angel_of_the_North in reply to

Well, the levo will hang around in your system for a while so, to start with you'd think you had more thyroid hormone than you actually do. Then it wears off and you are effectively on a lower dose. Usually, you replace levo gradually with T3 - 25mcg T3 is about 75-100mcg levo equivalent

As you’re saying that it might not be smart to necessarily remove t4, but replace some t3 for t4. My endocrinologist said the same thing, she said it didn’t matter on feeling good at first, she said lower the t4 and take the t3. However, I see a lot people on the website forum, who only take t3only, which I find different.

Greekchick profile image
Greekchick in reply to

I didn’t see your results while I was typing my answer to you. I will consider that while I sleep on it!!

Singoutloud profile image
Singoutloud in reply to

Rather than stop t4 completely it is more likely that those people who are T3 only have more transitioned from one to the other gradually over a period of time.

You may find that adding some t4 back in may help but remember that it will take a good few weeks for you to notice any difference as t4 does not work as quickly t3.

waveylines profile image
waveylines

When I went through this.....trying to find the right thyroid medication for me, I was told the following from a well known & respected uk doctor: Start with levothyroxine and slowly increase it so you are optimally treated......common mistake is doctors undertreating patients. If that doesnt work fully we lower the levothyroxine and add a little T3 in, gradually altering the balance of T3 to levothyroxine in, checking blood results, signs & symptoms, if that doesnt work fully then move onto a NDT OR if you dont convert well T3 only.

You havent said you dont convert well but a friend has reported T3 is better. It is for some as they dont convert but for many people a combination of all the thyroid hormones is best. I know two people in my direct life (not online) who have done great on levothyroxine on its own so its a question of carefully and methodically finding whats best for you.

I definately would not leap into T3 only treatment unless you have a diagnosed conversion problem. It sounds as if your doctor is adding some T3 in rather than withdrawing you from levothyroxine all together?

For me a NDT turned out to give me the best response. It took am afraid several years to find this and to find the best brand of ndt for me but once found have been stable ever since.

On top of this you need to make sure your B12, vit D, folate are all optimal as they are commonly low. B12 will help with conversion & uptake too.

I found keeping a daily brief log of what I was taking, alongside my temperature and pulse first thing, signs and symptoms plus blood test results done periodically, a useful record to review how I was doing. Every thyroid change of meds needs to be done slowly with a 6-8week gap to allow the body to adjust and the effects of the change in meds to take effect. Tedious and slow but worth it in the end.

in reply to waveylines

I should get all my blood results on Wednesday, I got my doctor to do bloodwork on estrogen, tsh, free t3, free t4, sex binding globulin, etc. I think the problem might my levothyroxine brand, which I am taking tirosint. Perhaps my body is rejecting the tirosint; I believe the brand could be an issue.

Those results show that you are probably on too low a dose. Low T3 usually causes low mood and you may be getting less now than you were converting from levo. You free t3 is midrange (50%) but your TSH suggests that you need it higher in range to feel well. Most people on T3 only need it around 70-75% of range

SilverAvocado profile image
SilverAvocado

MorganLeesoso, I believe the reason you feel rubbish on this dose is because you're undermedicated. You don't have a freeT3 result there, which means we can't tell much about how you're doing. When on T3-only the freeT3 is really essential to see, because the freeT4 becomes meaningless. I believe the T3 uptake test is derived from freeT4, and doesn't tell us anything about T3. I may be wrong!

In your case, because the result is quite extreme, we're able to get some information from the TSH. Yours is elevated. When on optimal thyroid hormone, particularly T3, we expect to see TSH very low, probably below range. Lots of people are unlucky enough that they will have an under range TSH even though their freeT3 is still nowhere near high enough, because T3 is good at pushing TSH low. Because yours is pretty high, I expect your freeT3 is going to be quite low in range.

The dose you were taking is 25mcg of Cytomel? As others have said, T3 is 3x to 5x more potent than T4 (depending who you ask). So 25mcg of a equivalent to about 75-125mcg of T4. Patients tend to evaluate it more towards the lower end. If you were comfortable on a higher dose of T4 than this, what you've had is a dose decrease.

Are you planning to continue adjusting the dose until its optimal? Its a common mistake to give up on a specific form of thyoid replacement because we've only tried it on a very low dose and felt rotten.

On the other hand, you're saying that you did great in Levothyroxine, and only changed over because a friend had success with T3-only? I very much agree with others in this thread. Try out Levothyroxine fully first, if you then don't feel well reduce that dose and add a small amount of T3, and only after you've fully explored Levo+T3 go on to try something new. If you've done well on Levo I'd either stick with Levo, or try Levo+T3 to see if you can get that little bit more improvement. Don't throw everything out the window and start from scratch.

in reply to SilverAvocado

SilverAvocado, I further feel bad about listening to a friend, whenever she told me about cytomel; she said it was fantastic with reducing hypothyroid symptoms. I didn’t think she had a different form of hypothyroidism, which she has hasimotos. I have a completely different form, whereas she was trying to be a good friend.

SilverAvocado profile image
SilverAvocado in reply to

Everyone is different, most people will feel well on Levothyroxine (T4) alone, and some people will need something else, some form of T3. It doesn't make too much difference how you've become hypothyroid, anyone can find they need T3.

For people who have been sick for a long time, and finally get to try some T3 it can feel amazing! I'm not surprised your friend was very enthusiastic. But its not a magic potion, it won't help everyone, and has to be used properly just like T4.

Many people will want a little bit of T3 added to their T4. Its more extreme and unusual to need T3 only.

Andtired profile image
Andtired

Are you splitting the 25mcg into 2 doses? The half life of T3 is only 8 hrs (for me 6hrs) my dosing is 25mcg @ 4am, 10mcg@ 10am, 10mcg @ 3pm. MAKE SURE YOUR IRON IS UP! Or you'll get reactions. Also lower caffeine intake or you'll heart will race. The half life of T4 is 3 or 4 weeks so you may need more T3 as you clear T4. Good luck!

in reply to Andtired

Andtired, you make a good point on the dosage, my doctor never tested my blood level of thyroid hormone on cytomel. Lol! The doctor had told me everyone takes cytomel 25mg. What a big liar, she probably wanted to placate me, so I would have a placebo effect.

Everyone I want to thank you, I got good information from all the post. I can’t wait to talk with my doctor on the information, especially check my vitamins. Ask if I can get an increase in meds, it might be low.

Andtired profile image
Andtired

Labs don't really matter when on T3 only. TSH & T4 will be suppressed and T3 will depend on when last dose was taken. Symptoms are really the only indicator.

in reply to Andtired

Yes when I was cytomel 5mcg, I had a tsh 0.6 and I believe might free t3 be low. I suppose a increase from cytomel 5mcg to cytomel 10mcg, it might work.

silverfox7 profile image
silverfox7

Remember as well that you have a store of Levo in your body so adding in T3 needs to be done slowly.

in reply to silverfox7

Silverfox7 All accounts your right, my doctors are misinformed on proper thyroid treatment, one doctor told me thyroid hormone is a placebo effect. One doctor said it’s all about the numbers.

SlowDragon profile image
SlowDragonAdministrator

The majority of patients are on T4 only

Some people need small dose of T3 added alongside Levothyroxine. (Typically 10mcg, 15mcg or 20mcg per day, often as divided dose)

Far fewer people need T3 only

Have you done extensive trial of adding small dose of T3 alongside Levothyroxine?

If not, you might want to do so

in reply to SlowDragon

Yeah I heard a lot of people have done good on both cytomel and levothyroxine together. I feel the side effects with both are not beneficial, I would rather stick with one. I had tried cytomel together with levothyroxine at various dosages. I can say both gave me bad side effects, taking them to together is not good, especially with me.

silverfox7 profile image
silverfox7

Another important fact is to get everything tested as TSH is unreliable in some anyway and when taking any form of T3 then T3 must be within the range but near the top so never over. Might be easier to search the STTM book for how to go from Levo to NDT. It feels a lot easier to get the dosage right. Then if you are on it for a while and get bloods then you can tell whether you still need to address a not optimal T3

in reply to silverfox7

Yes I plan to get my labs in 2 weeks, allowing me to give tirosint to leave my system.

Rachel1958 profile image
Rachel1958

I hope you are feeling a bit better, Morgan.

A slight diversion - I'm thinking of trying Cytomel instead of Tiromel. Does anyone here buy it rather then get it prescribed? I'm self treating, so would like to know the best place to buy it from.

in reply to Rachel1958

I get my liothyronine (cytomel) prescribed, don’t know of any online pharmacy selling cytomel.

Rachel1958 profile image
Rachel1958 in reply to

Thanks - think I'll stick to Tiromel for now!

in reply to Rachel1958

That’s good! Yeah, I’m in a place to where my health is vastly different, although I’m self willing improvements.

Rachel1958 profile image
Rachel1958 in reply to

I'm so glad yoi're feeling better. Did you change to taking Cytomel only? x

in reply to Rachel1958

I’m taking both tirosint and cytomel, it seems superior than taking one.

in reply to Rachel1958

I hope your situation works out too!

Rachel1958 profile image
Rachel1958 in reply to

Thank you!

I’m trying to get my body readjusted

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