Hi I have posted for my daughter before, she was diagnosed with Hashimoto's and low adrenal function 12 years ago. In short after no improvements for a number of years we have managed her t3 dosing ourselves. She has thyroid hormone resistance and we are some 5 years into following Dr Lowes protocol. She is on 430mcg of t3 with no signs of over replacement at all. She wants to reach a point of clearing resistance in order to reduce her dose to something more normal as getting a doctor to prescribe t3 here is tricky let alone high doses such as hers!! She would also like to have children and is frightened of causing problems to a developing baby with such high pooling t3. Can any body recommend a doctor or health practitioner that uses Dr Lowe's protocol? I would contact them for a skype appointment? Any other suggestions are welcome. Thank you
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jennygrigg
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Her lab results, if recently tested, must show totally suppressed TSH and FT4 with FT3 in orbit!!
As you will know however Dr Lowe did not rely on lab tests, but serum T3 on 430mcg will certainly ring alarm bells in most quarters. As you will also know cellular/tissue levels of T3 cannot be measured by lab tests.....signs and symptoms only are used. T3 only is the absolute last resort.
How does your daughter feel at the moment, any symptoms of overmedication at all?
How long has she been taking 430mcg T3, that is an extraordinarily large dose. Is she taking this amount in a single dose as Dr Lowe advised for lower doses?
How does your daughter source this T3? Is she confident that the source is reputable and the T3 of good quality?
I expect she monitors her resting heart rate and waking temperature on a daily basis.
How much weight has she lost? This is significant because if she has lost a lot of weight then a fair amount of the T3 dose must be reaching the receptors and therefore the nuclei of the cells where it gets to work! A medics opinion, that makes complete sense... not mine.
Does she check for hand tremors....movement in outstretched arms, sheet of paper on top?
It is possible that on a high dose symptoms of overmedication are similar to undermedication....the converse effect, again the view of a medic. I suspect that happened to me when I reached 212.5mcg.
I too have a form of thyroid hormone resistance and currently take 100mcg T3, it was 212.5 mcg reduced to 200mcg, until after several months on that dose I reached a tipping point and signs of overmedication started and I then knew I had to lower my dose asap.
I'm not sure what you mean by "clearing resistance".
As I understand it (some of) the T3 receptors become "inactive" with RTH which then prevents the hormone reaching the nuclei of the cells where the T3 becomes active. This is sometimes referred to as tissue hypothyroidism. It is an incredibly complicated process but in my own experience I concluded that eventually the force of the high dose T3 kick-started some of the inactive receptors which means I can now cope with a smaller dose....currently 100mcg. It was lower but I had to increase further to reach a therapeutic dose.
I self medicate. I doubt you will find a medic who will prescribe T3 in that amount. Here in the UK getting T3 prescribed at all is frequently a challenge and a consultant has to both agree the need for T3 and to issue a prescription. I have no idea what the protocol is in Australia but I imagine a similar cautious approach is employed.
I have no experience of high T3 in pregnancy so cannot comment other than to say that personally I would need to do a lot of homework first.
Re your comment "high pooling T3" - T3 has a half life of 24 hours in the blood. So, it doesn't stay around long enough to pool. Do you perhaps mean instead, high FT3?
To answer your question about finding a medic who follows Dr Lowe's protocol....difficult if not impossible. GPs in the UK have been called before the GMC for what was regarded as malpractice.
I might suggest Paul Robinson, a thyroid patient advocate, not a medical practitioner, who has many years personal experience and much knowledge regarding use of T3 and the author of several books on the subject. The late Dr Lowe wrote the Foreword to his book Recovering with T3
paulrobinsonthyroid.com/
I would agree you need to discuss this with a knowledgeable professional.
Hi DippyDame,Wow and thank you for your thoughtful and detailed response Yes her latest results are exactly as you described and as i would expect:-
TSH .01mIU/L (0.5-4.00)
FT4 <2.0 pmol/L (7.5-16.0)
FT3 10.9 pmol/L (3.5-6.0)
Interestingly her FT3 reduces with increases in T3!
My daughter has never had any signs of over stimulation. Her average heart rate (from her watch ) is 52bpm, she hasn't had any weight loss - in fact she works so hard to maintain her weight with diet and exercise and no tremors or sweating.
She takes her 430mcg in a single morning dose and has done so for about 4 years. She manages to get a private script from a functional doctor but this is always highly stressful thinking the doctor may stop it due to AMA investigation. It is the same here in Australia when T3 is mentioned. The T3 is compounded at a local pharmacy.
She hasn't checked temperatures for some time as she has been a fly in fly out worker in a regional mine (as an exercise physiologist not a miner) where her day starts at 3am.
Sorry, I do mean re activating receptors when i refer to clearing resistance and pooling I mean high FT3 serum reading.
When you were following Dr Lowe's protocol did you just keep making small increases until you felt over stimulation? And does this feel like described by others as sweating, shaky, high heart rate, anxious and jittery or did you feel something different? I am wondering if we try increasing a little more to reach this point as my daughter really wants to be on a "normal-ish" dose. It just gets quite scary.
I'm very surprised that on a dose of 430mcg T3 your daughter's FT3 is 10.9 pmol/L (3.5-6.0). I would have expected her serum level to be much higher. I would also expect her metabolism to go into "overdrive" with resultant weight loss.
I can only suggest that the hormone is either not reaching the serum from the stomach or that the T3 content in the compounded medication is very weak. Have you considered discussing this with the pharmacy.
With that FT3 level I can understand why the dose is being tolerated.... with RTH existing.
After diagnosis 20+ years ago I was prescribed levothyroxine which never made a great difference and which eventually left me barely able to function. From conversations with both my GP and endo it was clear that my only hope of improvement was to self medicate and add T3 which I had to self source. By this time I had tested positive for the Dio2 polymorphism/ homozygous which research indicates causes poorer conversion than if heterozygous. I titrated various T4/T3 combos with very little improvement until I decided levo had to go. My T3 journey is detailed in my profile - click on my avatar if interested.
We are advised to increase until we feel better, ideally we should not need to reach the point where we feel overmedicated!
I'm now convinced after much "digging" that I've had RTH all my life and that low T3 has always been a factor ( early blood tests suggest this is likely) which may be a combination of both the Dio2 snp and RTH....or even also another genetic issue. I was aged 70 when the full force of this hit me and by then the damage causing my symptoms was not all recoverable ( according to research) but I now function reasonably well but fatigue and pain still exist to a degree.
I recently ended up in A&E in serious pain but all tests and scans were fine so I was sent home with analgesics and told to rest. Then it dawned on me, I'd had a very stressful year, family bereavement 200 miles away and I had to cope with all related things remotely. I didn't realise I was physically and mentally exhausted. Lightbulb moment....I concluded the stress had lowered my T3 (then 75mcg) so slowly increased to 100mcg and I'm recovering again. My medics hadn't a clue and suggested a musculoskeletal problem!
Such are the complexities of dealing with thyroid disease and RTH. I'm lucky I have a supportive husband.
I fully sympathise with your daughter, I really have no suggestions other than she tries reducing her dose, maybe by half, wait a few days see if symptoms return and if so very slowly increase again.....and, check with the pharmacy, explain that the dose has had little impact on her FT3 or symptoms and ask if they can offer an explanation.
I'm not a medic so cannot advise, all I can offer is my own experience which may or may not work for someone else. I'm not sure I'd be comfortable increasing from 430mcg but as we always say here we are all different with different needs. The bottom line is, "How does she feel", how debilitating are her symptoms.
Just a few of my thoughts....fingers crossed that you both find the answer. Come back to us anytime, here we're all in this mess together.
Thank you so much DippyDame, certainly ideas for us to look at. I'm sorry life has been so hard for you. We are in this mess together and it shouldn't be that we have to do it alone or without doctors help but it is what it is and we will push on. I wish you health and happiness and will touch base with any updates or helpful thoughts. Take care. 😃😃
Good luck....I think the determination to keep looking for answers is important. My grandmother used to say, "I'd rather wear out than rust out", something I try to follow.
I dont have much experience with synthetic T3 only a few weeks. I'm normally on Natural Dedicated Thyroid these days. But for a few weeks between trying to get a ok TSH on Levo and feeling like a dead dog all the time. I tried 20mcg liothyronine T3 three times a day . And I just crashed from feeling great one minute to feeling like somebody just put the handbrake on about every 2 hours . I feel we need T4 too, - Natural or Synthetic and really the raw T3 is just a helper. But what do I really know - I only tried it for a couple of weeks.
One thing I do know is everything is about thyroid for us - every now and again I convince myself I've go some rare disease and then I fiddle with my thyroid medication/dosage and magically the disease goes away. Just keep adjusting and trying other thyroid products. There is so much out there (NDT Pig Thyroid, Cow Thyroid, herbal Thyroid supplements, Liothyronine, Levo veriants. The internet is amazing what you can buy - And you can mix an match.)
The other thing I learnt from competitive sailing "if in doubt let it out" this means when you get lost with your sail tune the best option is to detune - always go down in doseage and then slowly work your way back up. So if 430mcg seems like a lot - maybe it is ? Try taking half for a week. And just use symptoms as a guide - how is my temperature ? - 35ish C is a little low maybe I need more, I have a constant head ache - maybe I'm taking too much, I get tingles in my feet and hands - too much, I cant put weight on - too much, slight heart palps - too much, cant sleep - too much, cold in bed at 2am - not enough . The thing is - you can't get a blood test every few days and track what is going on, so really there's not much point in doing them at all - apart from making your GP happy - and what do GP's know - they don't take thyroid drugs - it's all theory and NHS rules/regs - very little hands on practical knowledge.
I self medicated on T3 to begin with, 75mcg helped but made the best impact for me taking at bedtime as my cortisol production is very low 95 [150-550] I saw Endo who agreed no signs of being over replaced and took over prescribing. I still had muscle weakness, joint pain and fatigue. I over time went up to 150mcg but the last symptoms just never went, I reduced down again to 75mcg but started feeling more hypo, I am on 100mcg in one dose at bedtime. My Endo monitors my temps, heart rate, blood pressure, cholesterol, I have annual dexa scan for bone density, heart and also SHBG as that will apparently show long term over use mine sits just under range 68 [70-90] a lady I know takes a bigger dose so all her symptoms gone but her shbg was at 120. It is very difficult for those of us with resistance. My t3 goes up to 10-11 for up to 4-6 hours after my dose, but drops off rapidly back to 1 after 8-10 hours. My Endo kept me in for t3 tests every 2 hours after my dose. I have never had tremors, high heart rate, I sleep well, however I often feel warm but my temp when checked average 35. For me I think I am stuck with the last symptoms, it's as good as it gets for me. I had most hypo symptoms all gone with t3 but never managed to get back to full health at a level of fitness before my thyroid removed. Many people recover fully, I am not one of them. I am often warned about t3 but I have to weigh up risk V's reward. Without large dose of t3 I do not function. I also recommend Paul Robinson as he has done a lot of work on T3. Also Dr Sarah myhill online. Very best regards.
Thank you endomad for your response and your story. I'm sorry you have not regained full health. I always have hope that medical advancements may one day provide all the answers, stem cell therapy even. I don't want my daughter, who has struggled for 27 years to have to live a half life so I will keep searching for answers. I wish you health and happiness in your journey. Take care😀😀
Totally agree she is far too young to give up. I was 50 when my thyroid removed and I often wonder if my high octane life or sports, travel, fun, career etc maybe burnt my thyroid out! I was 55 before I started to feel better, I am sure that the totally wrong and at times no treatment of my hypothyroidism did permanent damage that is maybe irreversible. My joints may be worn due to too much sport but the pain only happened after TT, muscle weakness is prob due to my lack of activity and at 60 maybe i should expect less energy....at 27 no your daughter should not. I had lived a full & fun life before my thyroid debacle xxx keep pushing xx
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