More success with T3: Here is new success story... - Thyroid UK

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More success with T3

PaulRobinson profile image
37 Replies

Here is new success story kindly submitted by someone who has significantly improved through the use of T3 and CT3M:

recoveringwitht3.com/succes...

Best wishes,

Paul

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PaulRobinson
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37 Replies
PR4NOW profile image
PR4NOW

Paul, have you been able to keep track of any numbers regarding how many people have had success with the CT3M protocol or with T3 only? PR

PaulRobinson profile image
PaulRobinson

I don't do statistics Paul - I know there are a LOT - many many many more than I ever get success stories from. I just work with people. I don't collect a lot of data - sorry mate!

jlovell88 profile image
jlovell88

I was on 250 micrograms of t4 and feeling terrible. I went to an alternate thyroid specialist and was given an RT3 test. That was high and I was switched to t3. First 100 micrograms =400 micrograms of t4. Then I reduce it because it causes high blood pressure. But I feel good. Then I hear that 1.66 micrograms per kilogram is total replacement. Since I weigh 100 kilos, that would be a dose of 166 micrograms of t4. That works fine for me except that it gives me a TSH level of about 20. My regular doctors insist that TSH matters and feeling good does not. Rather than arguing with doctors I have decided to take 250 micrograms t4 when I am being tested and 166 the rest of the time. I am not obligated to play by their rules.

PaulRobinson profile image
PaulRobinson in reply tojlovell88

100 mcg T3 would be more than most people using my protocol would take. Most start with 2-3 doses of 10 mcg per day and build up slowly as T4 and reverse T3 clears. My protocol is quite different to other suggested ways of using T3 - it is safer and more effective than other protocols. In addition you can't calculate how much T3 to use based on a T4 dosage.

Good luck anyway!

jlovell88 profile image
jlovell88 in reply toPaulRobinson

I agree that 100 mcg T3 is too much. It is what I was prescribed. About 40 mcg is enough for me. But what I am saying is that I don't have to get a conservative doctor to agree that my TSH is at the right level. T3 apparently has more trouble getting through the blood brain barrier and thus does not produce as much negative feedback to the pituitary. In my experience most doctors do not seem to be thinkers. They could be replaced cheaply by computer programs. An informed person can read the rules they go by in the literature. That would reduce the cost of health care!

I have not seen how you determine T3 dosage, but it sounds like something for me to pay attention to. I will try to find it.

PaulRobinson profile image
PaulRobinson in reply tojlovell88

That info on T3 in the brain is just wrong. Plain, utterly incorrect. It is going around the Internet now and it isn't true.

There are plenty of people on only T3 (some without thyroid glands or thyroids that don't work any more and have no T4 at all) that have totally perfect brain function on modest doses of T3. I am one and I know many others.

Some people take one slice of research and extrapolate results that are not true from it. If that research was true then people like me wouldn't be able to dress themselves without help on a morning let alone advising other thyroid patients or writing books :)

This 'research' and subsequent Internet rumour is similar to the one that says that everyone needs some T4 and rT3 - just not true :)

jlovell88 profile image
jlovell88 in reply toPaulRobinson

I will keep in mind what you say. It does not make sense that t3 would have more trouble with the barrier than t4 since it is a smaller molecule. I assumed there might be a transport mechanism.

helvella profile image
helvellaAdministrator in reply tojlovell88

There is a transport mechanism. Well, at least one!

Have a look at thyroid hormone transporters Monocarboxylate Transporter 10 (MCT10) and Monocarboxylate Transporter 8 (MCT8). (There may be others but you would be likely to come across them if you look for these.)

Size of molecule is not the only criterion - though it is important. Things like charge are also critical and, though any chemistry I once knew is long gone, I suspect that T4 and T3 could have significantly different charge characteristics.

Rod

PaulRobinson profile image
PaulRobinson in reply tohelvella

Rod as always you are a mine of information!!!! :)

PinkNinja profile image
PinkNinja in reply toPaulRobinson

I'm on t3 only (100mcg) and my brain function is better than its been in years! It was rubbish on t4. I thought there was research that suggests the brain needs some direct t3. I hadn't heard this latest "research" stating the opposite. It does annoy me when research gets twisted.

It's always good to hear new success stories. Thanks Paul :)

Carolyn x

PaulRobinson profile image
PaulRobinson in reply toPinkNinja

Good to hear you are doing well on T3 Carolyn!

lizanne profile image
lizanne in reply toPinkNinja

Hi Carolyn - I have been on 125-15-mcg of T4 and 40mcg of T3 with worsening hypo symptoms including brain fog, anxiety, hair loss increasing. I have tried CT3M unsuccessfully before (my fault I think) and want to try it again as saliva tests have always revealed adrenal problems with very low DHEA. I have bought new thermometer, charts to track etc have already been taking BP etc. My question is did you take T3 and manage all of this by yourself or is there a Ct3M section/forum somewhere?

Many thanks for any help

Lizanne

PinkNinja profile image
PinkNinja in reply tolizanne

Although I take t3, I didn't need to follow CT3M because my adrenals responded well to rest and supplementation. Also the T3 itself helped a lot.

Paul Robinson, the original poster, is probably the best person to ask as he developed the protocol.

Sorry I couldn't be more help.

Carolyn x

PaulRobinson profile image
PaulRobinson in reply toPinkNinja

I responded CarolynB - I just gave my website link which has general info and my blog which does contain a link to the group. I wasn't sure if I was allowed to just put the link to my forum here.

Thanks!

PinkNinja profile image
PinkNinja in reply toPaulRobinson

I'm would think it's fine to post the link. It's quite a specialist protocol with which many of us here have little or no personal experience or expertise. If you are worried about posting the link you could message her instead.

Thanks for responding :)

Carolyn x

PaulRobinson profile image
PaulRobinson in reply toPinkNinja

Thanks Carolyn! :)

PaulRobinson profile image
PaulRobinson in reply tolizanne

I have my own group on Facebook. But I am not sure about the policies of posting that link here. If you look on my website then in the blog section you'll fine a blog post with the link in: recoveringwitht3.com

I suspect the T4 you are taking is part of the issue. Your TSH will be suppressed which typically gives the worst possible FT4 to FT3 conversion ratio and the max rT3.

Doing CT3M with that much T4 and rT3 in the system is not likely to work very well. See if you can find my group - you'll get good support there.

Good luck!

Paul

lizanne profile image
lizanne in reply toPaulRobinson

Thank you Carolyn and Paul. Paul is Facebook the only CT3M forum you are involved in or is there another (I am not a Facebook user) but I definitely need a support group/guidance to try and get this right!

lizanne profile image
lizanne in reply tolizanne

Sorry Paul - just answered my own question - just saw the link on your site to the forums you are involved in !

PaulRobinson profile image
PaulRobinson in reply tolizanne

That list is out of date. I need to rewrite it. The one I gave you is the only one I am truly active on.

PaulRobinson profile image
PaulRobinson in reply tolizanne

Its the only one where I do detailed work yes. I also have 10 admins who are all reasonably trained up on the protocol.

PaulRobinson profile image
PaulRobinson in reply tolizanne

My FB group is:

facebook.com/groups/Recover...

We focus on T3 use with/without CT3M.

Cheers,

Paul

lizanne profile image
lizanne in reply toPaulRobinson

Paul the only thing about Facebook Is friends and family all see what you post don't they I think? And I want to keep my health issues private while I struggle through to find a cure. Is that the only forum you are active on?

PaulRobinson profile image
PaulRobinson in reply tolizanne

It is a closed group. Only those that join can see posts.

mickstability profile image
mickstability in reply toPaulRobinson

Yep, I'm one. 80mcg T3 does it for me.

PaulRobinson profile image
PaulRobinson in reply tomickstability

Great!

Rose2408 profile image
Rose2408

Hello Paul. I just stumbled upon this post & wondered if you would answer a (probably easy) question for me. I would greatly appreciate any comments.

T4 doesn't seem to do much for me at all & I hate taking it full stop...but I have mixed thyroid cancer, reoccourance & spread. No thyroid. Due to this I am using TSH suppression to attempt to keep my TSH at 0.1.

Do you believe I Can I cut out T4 altogether & use T3 only to achieve this? I find it almost impossible to take anymore than 100mcg of T4, however I seem to be able to take plenty of T3 with ease. So my obvious solution would be to take only T3 but I am unsure if this will have the desired effect on my TSH levels.

I apologize that I do not know your principles so I'm sorry if I'm on the wrong track.

I'm currently taking 100mcg T4 & 45mcg T3.

Thank you

Donna

Rose2408 profile image
Rose2408 in reply toRose2408

Oh sorry I also take my T3 in 10mcg at 4 hourly intervals...

PaulRobinson profile image
PaulRobinson in reply toRose2408

I have met many and worked with some thyroid patients who have had TTs after thyroid cancer. Yes T3 only can work but the doses have to be high enough to totally suppress TSH. This is often easy to do because T3 is so suppressive to TSH. If someone has other issues like low iron or cortisol or another issue that is exposed when T3 monotherapy is used then these may need to get resolved. Another approach that is often employed is to dose with T3 and if when the optimal level is found TSH is not totally suppressed then a little T4 may then be added.

Although, the medical profession doesn't often offer T3 monotherapy many TT cancer patients do use it successfully.

I'd read my Recovering with T3 book. I also have a Facebook group that supports patients - you can find it via my book facebook page or my website.

Best wishes,

Paul

Rose2408 profile image
Rose2408 in reply toPaulRobinson

Thank you so much. I will certainly try to find your book. I am in Australia but I'm sure to find it!

You are right about the specialists fear of T3. I am not sure if they're lazy in reading the bloods or just refusing to allow change.

I have been very ill & following my TT (May 13) I was given scripts for T3 to prepare for RAI, at first I was so sick at the change of medication - now realizing it was not the T3 it was the fact the Endo put me straight on 80mcg of T3 the same day I stopped the T4, (he hadn't heard of T4 half life?!) but after 2 weeks I felt fantastic...this is when I first googled what was this magic little white pill that made me feel great that they told me to stop taking! I then started self-medicating as I simply could not cope with huge doses of T4 but I desperately need to get my TSH down to stop the cancer spread.

I realised I had scripts for 500 pills left so my plan is to have my TSH down before I meet my new Professor next month & hopefully she will agree to treat me on T3 instead....I have a 5yr old I need to look after alone and I just can't in T4 so I'm praying it will work! From what I've been advised I will need my TSH suppressed for more than 5 years so I need her to agree or I will not cope. I do have adrenal & liver tumors and I do have quite low levels of iron, Vit d etc but my immune system is rejecting injections for these so they'll have to wait. My body does react extremely well to T3 so it might work, I just need to take it every 3-4 hours or I'm flat as a tack!!

Thank you again for your time!

Donna

PaulRobinson profile image
PaulRobinson in reply toRose2408

If the doses of T3 are large enough then it should last more than 3-4 hours. Please read my book. There are other things that may need to get addressed in order to make the T3 work more effectively and then it should last longer than 3-4 hours after a dose.

Iron needs to be addressed for sure but cortisol may also need to be addressed (I have a method for doing that using T3 - see the book).

B12, folate and vitamin D should be tested and if any are in the low end of the range then they should be supplemented. D with 5000 IUs of D3, B12 with 5000 mcg methyl cobalamin sublingual or patches and folate with methyl folate. B6 as methyl B6 (also known as P5P) should also be used to support the B12 use.

Good magnesium supplements and/or transdermal magnesium is also important.

Good luck!

jlovell88 profile image
jlovell88

Does high TSH, say 15, cause a problem like promoting thyroid cancer? Or is it just an indicator of the feedback loop?

PaulRobinson profile image
PaulRobinson in reply tojlovell88

TSH 15 indicates hypo for sure but thyroid cancer is a totally different issue.

wakeham profile image
wakeham

Hi Paul

Thank you for all the information you put on line, I have taken your advise after reading your book and help from staff on line, and for seven months now I have taken the largest part of my T3 (30mcg) early morning which left 10mcg for 2pm which has helped me to feel a lot less tired,no sore throat unless I get over tired,I sleep a lot better than I did. So for me I feel that I'm winning slowly.

My Endo laughed at me when I told him I thought that taking my vitamins especially B12 has helped me a lot!He said that thyroid problems gets the blame for a lot of things which is not true.!

As I have high Antibodies I wonder if you could tell me if Red blood cell distribution width of 11% with range of 12.00%- 16.00% is anything to worry about ? This has been on my blood test for the last two occasions, my T3 is in range at 6.2 pmol/L ( 2.60 - 6.10pmol/L)

FT4 < 5.3pmol/L ( 900 - 19.00)

TSH < 0.03 mu/L ( 0.35 - 4.94mu/L )

I still have a lot of Hot/flushes which the Endo has no answer for! he tells me to carry on taking HRT.

I wonder if you have any remarks. Thank for your time.

Regards wakeham.

PaulRobinson profile image
PaulRobinson in reply towakeham

Hi Wakeham, sorry I don't know anything about red blood cell distributions. FT3 is still quite modest for someone on T3. You may need more daytime T3 as most people often feel they need to dose three times per day with T3. 10 mcg for a daytime dose is often the minimal amount that is effective also. Basically, you could be under-dosed still.

If B12 helped then consider 5000 mcg methyl cobalamin (B12) sublingual taken around the same time as methyl B6 (P5P). Vitamin D often is low also (if low end of the range and you don't have kidney issues then consider 5000 IUS D3). Take magnesium also - almost everyone is magnesium deficient.

Good luck!

helvella profile image
helvellaAdministrator in reply towakeham

Have a look here:

emedicine.medscape.com/arti...

(You might have to sign up - if so, it will be free.)

Not sure that a very slightly low RDW has much to say! But I might have missed the important factor.

Rod

wakeham profile image
wakeham in reply tohelvella

Thank you Rod and Paul for your help.Regards wakeham.

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