Firstly I started with the CT3M but unfortunately after a while I was getting severe headaches due to sleep disturbance. I then took the first dose at whatever time I woke up and the remaining two doses at lunch time and late afternoon.
The window of 'feeling fantastic' on T3 has long since gone despite increasing the dose. Adrenals are being treated with the maximum dose of Isocort.
Am still under-medicated and have just started increasing T3 again to a total of 112 mcg daily.
Just feeling incredibly disappointed that my body is still shonky and desperately want my life back!
So ... shall work towards one daily dose of T3 and see what happens. Failing that, adrenal testing may be needed.
as you may remember I moved to a once a day 'bedtime dose' a while ago and am doing well on it.
Bedtime is a good idea as your adrenals need the T3 while you are sleeping.
I did this 'gradually', ie: used to take 25mcg at bedtime and 50mcg twice a day over rest of day, so one day I took 25 as I woke up, 50mcg in day and 50mcg bedtime, then took 25/25/75 then 25/100 then 125, adjusting every 5 days or so.
Yes, I do remember but didn't know how you worked it! Thanks for explaining and it was the adjustment period that concerned me. Think I'll need to write it down each day as the brain fog hasn't disappeared.
I did much the same as nbd and take my t3 at bedtime 70mcg and usually get to sleep within 15 mins and sleep all night apart from getting up for a pee. I don't know how to stop that. I don't drink a lot in the evening.
That's interesting. I have to take some NDT in the evening or I don't sleep well and I don't feel well during the following day. It seems counter-intuitive though, but definitely seems to work.
tanny - it's circadian and means that you work out your optimum time for the first dose thereby enabling adrenals to fully utilise T3. For example, if you wake at 8.00 am then you would take your first pill at 4.00 am. Everyone is different as regards timings so it's trial and error.
Paul Robinson discovered CT3M and he wrote 'Recovering with T3' which explains the reasoning.
Hi cinnamon, My daughter couldn't get on with CT3M either. She persevered with it as she always does with some new suggested treatment, but she found that having to wake at an early hour to take the first dose exhausted her, and then she didn't wake again till late in the morning. It was logistically impossible and made her feel a lot worse - headaches, brain fog etc.
She has reverted to one morning dose as originally suggested to her by Dr Lowe (100mcg summer and 125mcg winter). Whilst still not 100% this T3 regime works better for her. She couldn't get on with taking ANY at bedtime - keeps her awake! She has found that now that her adrenals are operating better she has been able to drop right back on them and will soon be off them completely - just on 3 isocort only now.
Wouldn't it be great if the same magic bullet worked for everyone, but I think we all have to work out what is best for us as individuals.
Jane x
• in reply to
Hi Jane. It's such a shame as many people have found this method to work for them.
That's interesting that your daughter takes it in the morning but it's good that she's feeling better than she was.
I couldn't agree more about the magic bullet! How I wish there was one and we could all stop feeling that our lives have been put on hold for far too long.
This is a comment from Dr Lowe and cursor down to the question dated July 5, 2000
Dr. Lowe: Whoever posted the statement was right. In my experience, for thyroid hormone resistance patients, sustained-release T3 is a poor alternative to plain T3 taken once per day. We don’t have enough evidence to know why plain T3 is more effective.
Shaws - do you think that plain T3 works better than the slow release version? I've only used the slow release kind since I began with T3 years ago. Do you have any idea how long it woul d take to know, if I switched to the plain, whether it works equally well? I have to order the slow release from the USA, but if the proposed USA national health plan dictated by the federal government goes through it may be hard to get slow release T3 out of the country, if they still allow it to be made.
I am not medically qualified but if Dr Lowe says plain T3 is preferential to time-release I would go by him. He himself took plain T3 and used it for his patients. He did not only prescribe T3 but NDT as well depending on the patient.
This is also an excerpt from the above link:
Lab studies have shown that mutant, low affinity T3-receptors properly regulate gene transcription only after they're exposed to saturation amounts of T3. Under normal conditions, T3-receptors aren’t saturated, and the use of sustained-release T3 isn’t likely to provide saturation. Saturation isn’t likely to occur with sustained-release T3 because the T3 enters cells only in small amounts over an extended time. As a result, it’s not likely that large enough amounts of T3 will reach the receptors at one time to saturate them. But plain T3 in single doses enters cells in larger amounts. These larger amounts may provide the saturation needed to provoke transcription regulation by mutant T3-receptors. If so, these saturation amounts of T3 may induce waves of transcription that on the clinical level relieve symptoms of hypometabolism.
It means Natural Dessicated Thyroid hormone. It was the original used before levothyroxine became the only one to be prescribed by the NHS. It is called natural as it is usually made from pigs/cows thyroid and it is not synthetic like levo. Many people do well on levo but many do not and NDT contains all the Ts, such as T1, T2, T3, T4 and calcitonin and maybe other things we are unaware of. Names of products are: Armour, Erfa, Naturethroid, Westhroid, ThyroidS and Thyroid (I think how it is spelled) but some doctors will prescribe a few of these but not many and so have to go private. They are more expensive than levothyroxine (about £1.50 p.m.) and about £10/£15 per month for NDT.
The T3 wasn't working for me after the initial glory period until I cleaned up my gut and now it is working very smoothly again and am managing on 40mcg daily, even with no thyroid activity proven......
I was very surprised that I had gut issues as I have always eaten pretty healthily....obviously not healthily enough for my unique constitution!
Have done and am doing an elimination diet...it is VERY interesting! I am finding that I am very much more sensitive than I had believed Even supplements in tablet form were likely poisoning me YIKES!!!!!
Personally I feel that the elimination diet i did is the best...you feel so clean and clear and it is very noticable when something contaminates the system.
the elimination bit was easy it has been bringing foods back in that has been more challenging....I am seeing that I am VERY sensitive and I don't like feeling less than 100% LOL!!!!
Yes label reading does become part of life, I have contaminated myself a couple of times because I didn't read the labels
Message me your email and I'll send you some info.....
The ability to reply to this post has been turned off.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.