T3 and CT3M problems can anyone advise please - Thyroid UK

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T3 and CT3M problems can anyone advise please

TJM3 profile image
TJM3
10 Replies

Hi,

I started the CT3M on Saturday morning after reading Paul Robinsons book, as I have been having problems with T4 and converting to T3. I thought great! it should hopefully sort out my hypo symptoms as well as my bad adrenals and I want to wean off the 5mcg prednisolone I take.

I was taking only 75mcg Thyroxine, reduced it to 50mcg and had to stop it two days ago as I was having very hyper symptoms, but still feeling very tired and hypo at the same time. I have only been having 1.25mcg T3 in the morning (CT3M) and 1.25mcg in the afternoon, it's mad I know it is such a small dose. But I do feel a bit better than i did before i started and my pressures have gone up, but I am so jittery, my pulse is between 70 in the morning and 85 sometimes a bit higher in the day, which they say is ok. I don't know whether it is still the T4 or the T3 doesn't suit me. I don't know what to do, should I come off both or just stick with it and hope the jittering stops.

Has anyone had a similar problem when starting with T3 and CT3M?

Any advice would be great as I am a bit anxious, which isn't helping.

Many thanks x

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Clarebear profile image
Clarebear

Hi - I felt jittery when I first started CT3M. I started taking 1 grain of NDT at 5.30am and then I was taking 1/2 a grain at 3pm. Paul suggested taking 1/2 a grain for the CT3M dose and taking it earlier - about 4am I think i.e. three hours before getting up. I tried this but it didn't have enough of an effect. I found that 3/4 of a grain at 5am really helped, and I stayed on the same dose for about 6 months. I am now taking 1 grain at 5am and am fine with it now.

I know Paul talks about having to titrate the time as well as the dose, maybe you need to try an earlier time?

I'm afraid I'm not really an expert on this, but this is what worked for me. You could try posting a question on the STTM T3 only group which is where they discuss CT3M. Janey Alexander Bowthorpe (STTM) and Paul Robinson are often on there :) xx

TJM3 profile image
TJM3 in reply toClarebear

Hi Clarebear,

Thank you, that is reassuring, it is worrying when you don't know what is going on.

I will try taking it earlier as you suggested and see how I go. I really think this is the answer to my problems, but oh boy! it isn't easy is it. I didn't think such a small dose could have such an effect, although I know it's potent stuff.

I'm glad you are doing well with it, it's encouraging to know.

I will take a look at the STMM T3 group and see what they have to say.

Thanks a lot xx

( I would send a smiley face, but I don't know how you do it, lol)

in reply toTJM3

Whole thread of them... :-)

thyroiduk.healthunlocked.co...

Louise

x

in reply toTJM3

Hi, just read your question - I am in the same boat, trying to find out what to do after starting Ct3M 1 1/2 weeks ago. I feel exactly as you did describe above. How is it going now? Any improvements?

All the best, S

TJM3 profile image
TJM3 in reply to

Hi,

I am sorry to hear you are having the same problems, but stick with it. Since starting back in April I have tried different doses and timings to find out what suits me. At the moment I am feeling a lot better, I am still not 100% but I will get there I am sure.

The problem was I couldn't take much T3, I was very sensitive to it, are you the same? Someone suggested dissolving it in water to start with, which I did, then when that stabilised I crushed it into a powder and had small dabs of it under my tongue. I then managed to dissolve a quarter of a tablet under my tongue and eventually managed to just swallow it whole with no awful effects.

So the point I am at now is I reduced my Thyroxine to 37.mcg, but had to reduce it again to 25mcg and this seems ok at the moment. I now take 13.75mcg T3 at 4.45am, then today I have increased my 11.30 am dose from 2.5mcg to 3.75mcg and at 4.30 I take just 2.5mcg. I need to increase these, but I was concentrating on the am dose.

A few weeks ago I felt my adrenal support was probably not needed anymore as my pressure and pulse were quite high. So I decided to move my prednisolone 6.25mg and adrenal glandulars and Ginseng and Liquorice back an hour. I then sat for 10 minutes before taking them and checked my pressure, pulse and temps. Amazingly, it appeared they were better before I took them, so I started reducing by 1/4 Prednisolone first, I waited six days before reducing again by 1/4 and the results were great. It took me 12 days to come off them all together, I can't believe I have done it without crashing and in fact feeling a bit better. At first though I did have a funny head, but that was all. Last Saturday the 22.06 was my last dose, so on Monday I started to reduce the Adrenal Glandulars, by 1 a day and my Ginseng and Liquorice by 1 drop each a day. Yesterday I had no Ginseng and Liquorice an also finished my Adrenal Glandulars. My pressure, pulse and temps are all ok and I feel pretty good considering I am only relying on the CT3M. My pressure still drops now and again when I stand, but it is a vast improvement, the prednisolone and all the adrenal support never helped me in this way. I am very excited to be off the prednisolone at last, without any problems.

I know this is long winded, but I just wanted to tell you how I did it, so hopefully it will help you. But you must keep a record of pressures etc., oh, I also took my pressures etc., 1 hour after each dose to monitor what it was doing. Just to be on the safe side, when I go out I take some Prednisolone with me just in case I crash, but it has never been the case, I have had no problems at all.

I hope this has been some help to you, I hope so, you can contact me again if you need any more help.

Take care and keep going, I am sure it will pay off. Remember though, it does take time unfortunately, but you will get there!

Tracy :) x

Thank you Tracy for writing this long and informative to me. :-) I do get some hope when reading this. Earlier today I was reading folks story's being on CT3M for 9 months and stopped because of high heart rate and BP - so so depressing!

Can I ask you if you, when you tried to find the right dose and timing, changed from day to day? I feel I can´t stand it for a few days. I am on NDT and HC and really want to come off HC, so badly. I was advised to swap CM dose to T3 because I suspect I have conversion problems as well. I think I am going to try that - I have Liothyronin 20 mcg at home, but not sure how much to take for CM dose.

How bad was your adrenals? Did you do a saliva test before? MIne was under range all four times...:-(

Do you remeber when your high heart rate went? Was that a change in time or dosing, or both?

Can I ask you where you get your T3 from? NHS?

I am sorry to ask you all this questions, it is so confusing to understand what to do right.

Have a lovely weekend ,and I can´t stress how encouraging it is to hear that you are feeling better and I am so happy for you - just wish again and again and again I will be there one day.

All the best, SannaK

TJM3 profile image
TJM3 in reply to

Hi Sannak,

Thank you for your kind words and I am sure you can do it too! As for people coming off after 9 months I wonder if they monitored their pulse, pressure etc., because sometimes the dose and timing may need to be changed, so don't worry.

It has taken a while to find the right time, but I didn't change from day to day, as you need to let things settle, if you keep changing too soon you can't get a clear picture. Paul says to give it about five days to see how you are reacting. But I know it is difficult when you feel so ill.

I also have a conversion problem, I found out by having a home blood test, for FT4 and FT3, have you had this done? I found out about the test via the thyroid UK site.

My FT4 was at the high end and the FT3 was at the low end, I was taking thyroxine at the time and decide to read Paul's CT3M book, have you got it? I stopped the Thyroxine for a while and tried T3 only, I became quite ill and realised I needed a little T4, so I started taking 25mcg. I took the CM dose at 5.30am, 11/2 hours before getting up,which was only 1.25mcg to start with and stayed at this time for a few weeks, I gradually increased the dose by 1.25mcg. But I did have the jitters and my pulse was on the high side for me.But someone said a high pulse can be caused by a lack of thyroid hormone as well as too much, so I steadily increased by 1.25mcg each time and it has helped. The CM dose has been the most effective, I no longer have the jitters and have raised it quite a lot from where I started, I moved my time back to 5.15am, but It didn't help, but a week or so later I tried it again and was fine, and then 5.00 for a week, and now 4.45am which is great. I used to take a further 1.25mcg when I got up, but that gave me the jitters so I stopped it. I now have my next dose at 11.30am and a dose at 4.30pm, it seems to work at the moment. So the dose and timing was tweaked a little.

I did have saliva tests done about 4 years ago, they too were at the bottom of the range, my DHEAS were below normal until midnight they just reached the bottom line.

I will send you a private message to tell you where I get my T3.

It's no problem answering your questions, I just hope it helps you and gives you the courage to carry on with it. It's a pity its not one size fits all, but it isn't unfortunately.

Take care and have good weekend too.

Tracy:) x

Hi Tracy, I am so glad for all the info you wrote down. It does seem like you are doing the right things. I am happy for you. Still good after stopping pred? Do hope so:-)

I have now ordered the reverse T3 test kit and am going to ask the nurse to fill the tube next week when I am doing my labs at my GP. Cross fingers. I also bought a blood pressure reader today. I think I have low BP. Have your BP gone up with Ct3M?

Yes, I am very sensitive to T3 as well. Before I got on NDT and HC I tried taking it but could not tolerate even 5 mcg. At the moment I take 6 mcg in the 0,75 grain NDT I take for my CM dose and then I take 10 mcg more spread out in two more doses over the day. And that works. So I guess the HC maybe helped me raising it, but it is still to little to feel good from so I need to increase.

I am like you going to concentrate on the CM dose and try to raise that to start with. You started on a lower amount than me, so it is very reassuring to hear, and I hope I can do it as well. How often did you tried to raise T3 your CM dose and with how much?

I am also curious how you are able to divide the pills into such small micro amounts?

I am going to answer your info about T3 ordering as well..

Thanks again

Sanna

I started to take BP, temp and pulse before and after I take HC. You also mentioned that your vitals were actually better befor taking Prednisolone and glandulards. I wonder in what way they were better?

Mine, when I did today first time, BP and pulse raised 1/2 h after taking HC, from BP BP 106/64, pulse 71 to 107/62, pulse 84 - I dont now if that is good or bad. My BP is low so would be good if it raised??

TJM3 profile image
TJM3 in reply to

Hi, sorry for getting back to you late, I have only just got on to my computer.

I am glad you have got your monitor and are having the blood tests, that will all help you. As for the small dose of T3, I use Cytomel 5mcg and just cut them in quarters, it's a little tricky, but worth it if you are sensitive. I would just increase by 1.25mcg and when I felt ok for about 5 days to a week, I would increase it again, always taking temp, pulse, bp in the morning before I awoke and after other doses.

My bp would go down when I took the prednisolone and glandulars, but I noticed wihtout them my pressures would be a little better, so I took the chance and reduced them until I was off them completely. They are not perfect but a lot better than they have ever been while taking prednioslone.This morning they were 103/53 to 103/56, which is good for me, but over the weekend they were 105/55 to 110/62 first thing in the morning, which is fantastic considering I had a busy weekend, but this never ever happened while taking the prednisolone or glandulars, they always dropped.

I am no expert, it's just what is happening for me, I am still in the early stages myself, but so far so good. Maybe the sttm group could give you some more advice, I tried to join but I didn't have a facebook account.

Keep going and you will get there I am sure.Keep smiling:-)

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