Stopping Levo starting T3 Cytomel: Hi all, would... - Thyroid UK

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Stopping Levo starting T3 Cytomel

aineyy profile image
17 Replies

Hi all, would appreciate peoples thoughts & experiences. Bit of background started 50mg of levo back in Sept 2015, after a bit of a shaky start after 3 weeks started to feel much better, but then at the beginning of Dec I became very ill, complete exhaustion, horrendous anxiety (never suffered before), wildly fluctuation temperatures, & blood pressure, heart palpitations, vomiting, diarrhoea, insomnia, lost a stone in weight, to be honest I thought I was dying. My doctors tested me for just about everything going to be fair & my thyroid levels were fine, they found low Vit D beneath ref range of 25, low Ferritin of 20, borderline low cortisol, although had synacthen test & not addisons. Due to being so ill, I forgot to take my Levo & by the end of the day I felt so much better. I reported this to my GP & consultant who felt it was poisoning my system & to reduce it down to 25mg, whilst they came up with a plan, this I did & again felt much better. Is it even possible for Levo to cause this horrendous reaction?

I have now come off the levo completely & they are trialing me on Cytomel this 1st week 5mg in the morning & 5mg in the afternoon, next week 5mg split across 3 doses & the week after increasing the first dose to 10mg, does this sound reasonable? I am also having to keep a log of body temp, BP & pulse, so far so good, feel a little dizzy but vitals holding steady.

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I just recently started with T3 only, but I am self-medicating, I don't have support from a doctor and I get my own T3 (I use Uni Pharma). I am on 75 mcg now and I feel good but I still don't know is this my optimal dose or I'll have to raise it in near future.

aineyy profile image
aineyy in reply to

Hi thank you for your reply, can I ask how long it took you to build up to the 75?

in reply to aineyy

Not long because I was already on both t3 and t4 so I just stopped with t4 and added what should be equivalent in t3.

Heracles profile image
Heracles in reply to

Hello message me please :-)

aineyy profile image
aineyy in reply to

Hi, could you PM me your source for Uni Pharma T3 please, I am currently on this through the NHS & it suits me well, but they have just refused to increase my dose, even though my blood results show my T3, to be right on the bottom of 'normal', thanks in advance.

in reply to aineyy

Sent you link on PM.

marsaday profile image
marsaday

T3 is best used in the smallest doses, so 5mcg are good. Tracking all these vital signs makes it easier to see if all is going well or not.

aineyy profile image
aineyy in reply to marsaday

Thank you for that Marsaday, good to know I'm starting on an OK dosse.

I would not have any use of 5 mcg of T3, for most people this is nothing, especially if they are on only T3. In that case if they take 5 mcg and it is enough for them than I suppose they don't need meds at all.

aineyy profile image
aineyy in reply to

HI thank you for you reply the 10mg per day is only a starting dose for 1 week, then it will be increased, on a weekly basis, due to my bad reaction to the levo, we are taking baby steps. How much T3 do you take? & how long did it take you to build up to a full dose.

in reply to aineyy

I did it fast, for me it was OK but I know they say you should go easy. But I am impatient, I know. I dropped my Synthroid over night for 100 mcg and took 25 mcg of T3 instead. After just a week I dropped another 100 mcg, so now I am on 50 mcg of T3 and 50 mcg of Synthroid. I will probably drop T4 completely soon. I feel good although I did it so quickly, I don't think everyone should do it like me, most people need slow change but in my case it worked.

aineyy profile image
aineyy in reply to

Glad things worked out for you. I too am impatient, but have to go slow due to other issues, thanks for your input, much appreciated.

in reply to aineyy

Good luck :)

marsaday profile image
marsaday

The body makes 1-2mcg of T3 per hour. Replicating this is useful. Some need more per day obviously. So i don't mean a person takes 5mcg per day, rather per dose. You will then multi dose per day.

Some people, probably loads of people not requiring thyroid meds, would benefit from a small 5mcg dose of T3 per day. Tuning thyroid performance for an average person would bring huge health benefits. This may be looked at in the future as health care progresses, but for now it is all about treating when actually ill.

I think using T3 is best done when we compliment our own T4 production. This means allowing the TSH to not get too suppressed as this will decrease conversion. This all needs blood testing and can be very impractical to do, which is a shame because if we could blood test when we required we could see the inside picture a lot clearer. So we have to rely on how we feel, which is the best method, but some blood test back up is useful.

If on T3 only then yes higher amounts are needed, but i think many people are actually on too much T3 and this is acting against their own natural rhythm. I think a T3 intake of 25-50 T3 per day is going to be the optimal amount (based on the body making 1-2mcg per hour). These doses are then divided up to fit in with when we are awake.

Timing of doses is very important i find.

Heracles profile image
Heracles in reply to marsaday

So if i went on 75mcg dose but was taking it only once a day on empty bench when i wake up..

When would u suggest me to take it if i go back on t3 for example 50mcg every day splited to 2x25mcg morning and afternoon will do better than one high time dose?

aineyy profile image
aineyy in reply to Heracles

Hi Heracles, I am currently on 40mg of T3 only per day, I take the first dose of 20 at 6a.m & the second at 12.30, that seems to work for me, although we are all different & it takes some time to get the dosage & the splitting of doses right for you. I am aware that some just take 1 large dose in the morning & others are splitting up to 5 times per day. I found monitoring my body temperature, heart rate & BP regularly through the day helped me to decide when best to take by slit doses.

All the best

Jayne

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helvellaAdministratorThyroid UK

You have posted a response onto an old thread. Whilst some people might notice it, many won't.

Also, in this case, the information in the thread is out-of-date.

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