Stopping T3: Hello I have been on T3 now for... - Thyroid UK

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Stopping T3

Daffers123 profile image
36 Replies

Hello

I have been on T3 now for 2 months and am not doing too well. Still getting palps, flutters, etc. after each dose and all my doses are small (1/2, 1/4 and1/4). Have been unsuccessful in raising as easily get toxic sym ptoms.

2 doctors have suggested I come off it altogether for a week to get some blood tests done to see what my bloods are showing.

When I try to cut the doses down I get dreadful palpitations and anxiety .

Is there a good way to stop T3 (even if only for a while). I came off T4 easily but am starting to feel like a heroin addict needing my fix. I wake up at 6.30am longing to take it. Is this normal please ?

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Daffers123
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36 Replies
gabkad profile image
gabkad

Daffers, I've looked through your old posts. Have you had your B12, ferritin, folate, vitamin D3 and A tested? Also magnesium?

If your heart is doing flipflops with extremely minor changes in T3 levels, then there's something going on. You need to get checked out for other health problems. Maybe get an EKG done as well. Kidney function. Etc. A full check up of everything needs doing.

Daffers123 profile image
Daffers123 in reply to gabkad

Hi Gabi

Thanks for looking at my stuff. had B12, ferritin, folate, D3. magnesium tested in Feb ad all fine. Not Vit A though. Have had ECG at A&E, heart monitor for 24 hours and bloods to test liver.

As you say,, something else must be going on. Got doctors appt on Monday so will ask him - trouble is don't know what to suggest we test for next. Maybe a nuclear scan to show up any infections etc. - I am really at a loss with all this

Thanks for your advice

A

gabkad profile image
gabkad in reply to Daffers123

Possibly a cardiologist is a good idea.

shaws profile image
shawsAdministrator in reply to Daffers123

Have you posted your blood tests with the ranges. Even though GP said 'all fine' they may not be at an optimum level.

T4 is easier to come off as a dose taken today will take around 5 weeks to slowly diminish. T3 as you know is the active hormone and is absorbed into the bloodstream in hours (I remember seeing 6 mentioned) but the action then begins when the T3 saturates the receptor cells and the effect then continues for between 1 and 3 days.

I take my one daily dose 30mcg and am fortunate to be fine. Some people need a higher dose if your cells are resistant.

This is a link with an excerpt :-

And finally, why do I specify that the typical patient use one full dose of non-timed-release Cytomel for life? Because extensive testing has shown that this is safe, effective, and most economical—when used within the context of our entire protocol.

Some of his patients took high doses if resistant. I have also read elsewhere that too low a dose can cause also cause problems.

web.archive.org/web/2010103...

Also read the question dated January 30, 2002

As a T3 user I found it was essential that vitamins and minerals were at good levels. In addition I found from experience that my adrenals needed support otherwise T3 did not work.

How often do you take your small dose?

130396 profile image
130396 in reply to

Cinnamon girl. How did you support adrenals when taking T3

in reply to 130396

130396 - I started off by taking Nutri Adrenal supplements but had to stop as they made me feel dreadful. I then bought Isocort though believe this is no longer available.

What helped me was sleeping as much as I needed to, pacing myself ie one busy day followed by a quiet day/spreading things out, gentle exercise and fresh air as well as a reasonable diet. Important not to get upset or cross too.

Daffers123 profile image
Daffers123 in reply to

Funnily enough Nutri Adrenals made me feel dreadful too - I tried them a year or so ago after some advice from Dp DP. I will have a look for Isocort, is it ssafe to self medicate ? I am so frightened as I have been struggling for months and not got much better, and dont want to make myself really ill again

Thanks

A

Angel_of_the_North profile image
Angel_of_the_North in reply to Daffers123

Isocort is no longer manufactured.

marmaris profile image
marmaris in reply to

Can you tell me how you supported your Adrenals please cinnamon_girl? I feel this is why I am not any better on T3. Had all necessary vits and iron done ok, and I take minerals and vits also.

in reply to marmaris

See above! It was really getting into a completely different mindset where my health had to be the most important thing in my life. I realised that I was the only person who could get myself better and, in some ways, was quite empowering.

Daffers123 profile image
Daffers123 in reply to

Got bravely up to 1/2 at 7am, 1/4+1/8 at 1pm and not sure whether to continue with 1/8 at 5pm or try to drop that and include it in lunch time.

Yes hw did you support your adrenals please ?

W3ndy2159 profile image
W3ndy2159

As a T3 user I agree with cinnamon girl. It is essential to health adrenals when on T3. Have you had them checked? All vitamin and minerals iron folates ferritin ect need to be optimum too. I had heart irregularities but they stopped when I reduced my T4 dose. Are you on combo? Mine were thro being over medicated not adrenals tho. Hope you get sorted soon.

Daffers123 profile image
Daffers123 in reply to W3ndy2159

Thank you. I think I would be better on combo as am very sensitive to meds and small changes in doses.

A

lottie-bas profile image
lottie-bas

I felt dreadful while taking T3, feel much better without T3, I know for some people it is a wonder drug. I also took it for a few months a year ago and had same problems

lottie-bas

Daffers123 profile image
Daffers123 in reply to lottie-bas

Hi Lottie,

How did you get off it ? Its really stressing me out as if I try to cut a dose, I get heart palps and feel so so tired and am worried about my driving ccapability etc. Mayybe I need some T4 as well, to help me get off it. Were you on T3 only - what size dose and how long for ?

Thanks

Andrea

lottie-bas profile image
lottie-bas in reply to Daffers123

Sorry haven't answered just seen your post. I was on T4 of 50 and T3 of 20. I reduced my thyroxine before starting T3. It is the about the third time I have tried to go onto T3 and this time I was on it for about 8 weeks. I thought I should keep trying, the endocrine has given it to me each time. I had a thyroidectomy 2 years ago.

But it never works for me Makes me feel really ill.

Lottie

Chicken12 profile image
Chicken12

Hi I was put on T3 in April and I have never felt better. My Endo told me if I had any heart palpitations I was to stop taking it immediately, She also said T3 does not suit everyone and unfortunately you could be one of those. I started on a 20mcg pill cut in half and taken twice a day. After two weeks this was increased to 1 pill twice a day.

Daffers123 profile image
Daffers123 in reply to Chicken12

Hi Chicken

Didnt you get any palps at all, even at the beginning ? I cant believe you increased after 2 weeks to double the starting dose. Maybe it just doesnt suit me. How did you know when you were taking a big enough dose to suite you ?

A

Chicken12 profile image
Chicken12 in reply to Daffers123

I had no heart palps at all in the beginning. When I started taking it gave me energy, it made me feel normal again and I could remember things, because I was having problems with memory.

After 2 weeks I was ready to increase to 2 pills a day. I could feel the dose wearing off, I was tired again. After a few weeks I increased to 3 pills a day. Sometimes I take 2 pills a day, other times I take 3.

A few weeks ago I did have heart palps, and I reduced dose and they stopped. So I increased after a few days. I have hashimos, so its swings and roundabouts. I don't think I will ever be able to say 3 pills a day T3 I think I have to keep tweaking. I was also told never to take T3 after 5pm unless I was having a late night. It can keep you awake. 4pm is my cut off.

I felt the effects of the T3 immediately. Energy, happier, just felt normal.

Daffers123 profile image
Daffers123 in reply to Chicken12

Thats what I was hoping for but its making me worse and more ill, Think its adrenal or cortisol related . I feel when I need to take another (part) pill but when I raise the dose I just get hyper symptoms. Dont know what to do.

puncturedbicycle profile image
puncturedbicycle in reply to Daffers123

I had such a similar experience. I would feel worn out when it was time for my second t3 dose but then my pulse would rise. I also have adrenal issues and I've been trying to deal with it (CT3M, dhea, rest, adrenal/thyroid support supplements etc) but nothing seems to change.

I tried a single early morning dose which did work a bit better but I was worn out by the evening so it seemed I might need a second dose anyway.

It no longer seems to raise my heart rate but a) in the end I added some levo because my t3 levels were falling and b) I'm due a test so I don't know yet if I'm adequately medicated.

The adrenal thing is such a drag. I feel for you.

Daffers123 profile image
Daffers123 in reply to puncturedbicycle

thank you so much for your message. We sound exactly the same with our problems. How much DHEA do you take ? I have some but havent dared start it yet. I get lost as to which direction to go in.

I am also better with my morning dose, but as you say, it doesnt last and when I tried to increase my lunchtime dose yesterday by a tiny amount, it set my pulse and heart off again, and I just felt like a zombie for a couple of hours. I also found I couldnt take any after around 4pm as it upset my sleep etc. I have high cortisol at night and in the morning, and low during the day (!)

Yesterday my endo and I agreed to put some Levo in (50mcg) with 6.25 of T3 as, like you, my levels havent raised in the past month. No wonder as each time I try to raise, get the problems...

I have joined Paul Robinsons Facebook Group 'Recovering with T3' but am beginning to think T3 mono might just not work for me. Also dont know how many more opinions I can cope with!

Do keep in touch, its so nice to talk to people with similar problems.

Andrea

puncturedbicycle profile image
puncturedbicycle in reply to Daffers123

Hi Andrea. I'm on 2 x 25mg per day - one in the morning and one in the afternoon. I've been taking it on and off for ages and it has never done the least bit of good. (Sorry, I'm not feeling very positive tonight which may colour my reply more than a little.)

I haven't the first idea what my thyroid levels might be now. I was eventually on 25mcg t3 alone over the summer and my tsh and t3 were right out of whack. I have added in 50mcg levo and eventually I even added in more t3, which in combination is not raising my pulse. Pulse is lower than when I was on t3 alone and temp is still low. I am VERY irritable and I hope that doesn't mean I am now on too much. I only added in a bit more (and then a bit more) because I was so blinking tired and it seemed to help a little. I sleep fine and my temp is low so I assume I am not overmedicated but I have been overmedicated before with normal pulse and temp. If I find I am overmedicated I again face the question of which hormone to reduce, levo or t3.

Like you I am overwhelmed by all the opinions and theories. I am also on that fb group but my cognition is so utterly awful I can't take in the subtleties of the CT3M. I do follow the morning protocol and I do take supplements for the important vitamins and minerals.

Yes, please stay in touch! Even if it is to commiserate. :-)

faith63 profile image
faith63

I would try taking the t3 once per day. That is the way Dr. Lowe, a pioneer in t3 researc did it with his patients. They did not improve on multiple dosing. When you cut your dose, you get anxiety and palps..maybe the dose is too low.

marmaris profile image
marmaris in reply to faith63

I have studied Dr Lowes work a lot and his T3 research. I have been taking 30mcgs T3 and started to split three times a day. Once I took two tablets in the days (although was higher 50mcgs and cynomel not nhs got atrial fibrilation), so worried me a bit. No problems under this but a bit afraid to take 30mcs all at once even though weaker NHS.

Daffers123 profile image
Daffers123 in reply to marmaris

Hi Marmaris

Are you on T3 only ? I am on cynomel as had allergic reaction to NHS T3. Are you still splitting 3 times daily? I darent take mine all at once. Do you get palps every time you take it ? Or if you increase your dose ?

A

marmaris profile image
marmaris in reply to Daffers123

Hi Daffers I am still splitting the dosage and have lately taken a dose in the evening and also changed to take my T4 in the evening also. I do not get a lot of palps but I find the NHS T3 to be weak and I am sure that this is because it is Mercury Pharma, I was on that a while with the T4 also but changed it.

Daffers123 profile image
Daffers123 in reply to marmaris

Which brand of T4 do you use? I cant use Mercury as they put acacia powder in it. Having looked on Paul Robinsons FB site re T3 it seems like my main problem is insufficient adrenal function. Saliva test came back Stage 2 maladaptation, but endo dismissed it totally. Dr in London more interested but too slow so think I will have to buy some HC.

Andrea

faith63 profile image
faith63 in reply to marmaris

I would try it or change nothing if it is working for you. I'm fortunate that my doctor has given me Beta Blockers which take the racing heart and palps away quickly. It is great stuff.

My heart has given me so many problems since i developed Hashimoto.

Daffers123 profile image
Daffers123 in reply to faith63

Yes maybe you're right about the dose and taking it once. A bit scary though...

faith63 profile image
faith63 in reply to Daffers123

I hate the heart stuff..it is the only reason i had trouble raising. It has been a horrible experience..the Hashimotos, going hyper to hypo and back.

Daffers123 profile image
Daffers123 in reply to faith63

I will try and be brave and take it in one go and see what happens

Thank you

25mcg of T3 is a lot to start with for some people.

Daffers123 profile image
Daffers123

Please let me know how you get on ?

Daffers123 profile image
Daffers123

Good luck and please let us know how you get on. I really thought T3 would be the answer for me, but sadly seems not.

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