JC Lowe thyroid hormone resistance protocol

Hi

Has any one here had experience with John Lowe's protocol for thyroid hormone resistance and required really high doses of t3 to feel well. I am asking for my 22 year old daughter who has felt better on higher than normal doses of t3 but has never been truly optimised. We are now following JC Lowes protocol and she is on a very, very high dose but still has very low basal temps and no signs of over stimulation at all. Any advice is gratefully accepted. thank you :)

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  • I have been underactive for well over twenty years now on a high dosage of levo. I'm always reading lately about t3:as feeling still poorly on t4. I didn't realise that body builders take t3 ( not saying All) take to help them and they don't have thyroid problems.

    I have felt like rubbish for most my life but did manage a reduction in thyroxine since attending a meeting and only then did I realise I was meant to take my meds on empty tummy and nothing but water for at least half hour after taking meds ( clearly noted on medication instructions that I did not read given drs instruction and he did not say).

    This lead to a slight decrease in meds yippee but I still feel naff lol.

    So I suppose I'm asking is your daughter taking meds correctly. x

  • Thank you veryangirl44I. Yes she is following Dr Lowes protocol to the letter of the law. It may be that she has not reached her correct level yet despite being crazy high. Dr Lowe has had patients needing 600mcg!!!! We are not near that level yet thank goodness. :)

  • Hi

    My daughter takes high doses of T3. She has taken up to 175mg. of T3 without having symptoms of hyper, it was only reaching 200mg. she developed palpitations so reduced her dose. She had been ill for five years before self treating with T3 and feels 80% better now she is now treating with T3.

    Previous to this her TSH reached 4.7 but Doctor would not treat. She saw the late Dr. Skinner who diagnose hypo. and she got up to 175 mcg. levo. with no improvement, then tried NDT again no improvement so tried T3.

    Interesting she recently stopped T3 as her G.P. wanted to do lots of blood tests regarding another health problem and said she was going to check her thyroid, and she had not told her Doctor she was self medicating with T3. She stopped her T3 for sixteen days before the blood tests and the result for TSH was 32.

    I think she may have thyroid hormone resistance but getting the doctors to recognise this is impossible.

    What is your daughters history.

  • My daughter has basically been unwell since birth, in fact she had clusters of symptoms that doctors had no answers for when I took her to them to see if she had some sort of syndrome. She is on hydrocortisone for Addison's disease and has Hashimoto's finally diagnosed at 15 years. We tried the stock standard t4 and she felt progressively worse, then ndt which put her already high antibodies even higher, then 3 years ago t3 only. She was on 150mcg but there were still many symptoms, so more research led me to JC Lowe's protocol. She is now near 300mcg and still nothing yet! Fingers crossed we get to optimum health soon and your daughter too :)

  • *jennygrigg I was on 120 mcg T3 for about 3 years with 250 mcg levo doing great but the endo made me reduce T3 over a year or so down to 60 mcg during which time weight gain 4 stone + losts of symptoms. I went to my pharmacist who helped me schedule all my meds which optimised the Thyroid medication results, 3 years later lost 3 stone mind in better place so able to excerise and diet not as good as when on higher dose but lots better. I now take most of my thyroid meds early morning at least 2 hrs before any food wake up take the meds go back to sleep blood test show TSH suppressed as you would expect I find I am so much better and n signs of over medicated. but they are still trying to get me to reduce more !! No Way.!!

  • I take a high dose of T3, but nowhere near enough. I've recently had to drop down to 112.5 mcg from 150 mcg at a point when I really needed to increase the dose again, the reason being that my heart suddenly developed odd arrhythmias that I thought might be AF. The rest of me needs much more T3 than this - I'm nowhere near my sweet spot yet.

  • Yes, AF is very well likely a piece of the puzzle. When your adrenals aren.t well supported, symptoms of t3 intolerance can occur, including palpitations. There is some really good info on adrenals at rt3-adrenals.org. Good luck and take care :)

  • Thanks, Jennygrigg. I've been taking adrenal support for years, so not sure this is the problem. Another factor to puzzle out. :-)

  • Hi Jennygrigg - yes, Dr Lowe's T3 protocol is something I'm trying at the moment. I've only been trying it for a few months - currently taking 87.5mcg T3, and hope to be on 100mcg in a day or two. At the moment I've seen some positive changes but nothing like as many as I'd expected so I guess I may have to go a lot higher. I haven't had any palpitations or any other "hyper" symptoms yet, but I am worried about doing this on my own and would much prefer that I had a doctor overseeing all this.

    Funnily enough, a locum doc at my practice recently ordered blood tests for something else - including TSH. When my TSH came out so low I thought I'd better confess to him that I was taking T3. I sent him a letter about it - I haven't heard back! :-D So, I don't know what he thinks about this.

    Oh, by the way, I've been ill for a very long time - since the 1990s. I was first given the ME/chronic fatigue diagnosis in 1999 after several years of being fobbed off. Then, I got a fibromyalgia diagnosis around 10 years ago after developing joint pain all over. I guess the longer you're ill, the longer it will take to show real signs of improvement, perhaps?

    I hope your daughter finds the right dose for her soon. Has she shown any small improvements in any areas yet?

  • Hi CarolineC57,

    Good luck and optimal health to you too :) I know what you mean about self treating, I am basically treating my daughter based on my research, doctors generally only like t4 here in Australia - I would love medical support!!! Since first beginning t3 only about 3 years ago she has seen real improvements, but there is still a piece of the puzzle missing and given she is now on a very high dose of t3, without any overstimulation, it confirms that piece is thyroid hormone resistance. She has been ill for a long time like you and you are right it will take time. Merry Xmas to you and your loved ones and take care x

  • I initially used John Lowes protocol to try and reduce my high rt3. I had trouble taking such high doses of T3, however, my adrenal were struggling and this was probably why. I cut back to small doses four times daily and added adrenal cortex to my daily supplements. With regular increases I'm now taking 75mcg Cytomel daily, my temps are hovering at 98...I'll continue to increase Cytomel until my temps are at 98.6. I believe unsteady temps (I take mine 3 time a day and divide by 3 to get my average) are due to adrenal issues and low temps are related to being hypothyroidism.

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