Like many others here i've had to resort to self medicating, as my GP won't acknowledge that there is something going on with my thyroid.
I've had so much support, so first of all a huge thanks to those who have commented on posts or private messaged me or answered my many questions (!). I literally couldn't have done this without you or this group.
As i have every hypothyroid under the sun, yet have a "normal" TSH, it was suggested to me both here and on TPAUK that i may have Thyroid Hormone Resistance, so that is what I've gone with
I ordered Tiromel from one of the recommended websites and started 4 weeks ago on 25mcg a day. I then increased to 50mcg a day after 2 weeks. My energy levels and sleeping have both improved soooo much already - I'm pretty well like a new person. Plus my temperature is now an average of 36.4 in the mornings rather than 36.2 - so its getting there! I still have off days, but more on days than off!
Today i started on 75mcg a day, as I've been told that people with THR usually need at least this.
Just one question - I know that i keep raising it until i get the symptoms of overdose, then i reduce again til i find my level - what are the symptoms? Feeling fine so far!
Thanks everyone!!
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Rachel1958
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25mcg of T3 is equal, in its 'effect' to 100 mcg of levothyroxine. So a high starting dose.
I take T3 only but my dose is 25mcg daily and that suits me.
You should always take your symptoms into consideration when taking thyroid hormones, and the relief of them. Normally, when increasing dose you should only go up by 1/4 tablet every two weeks always taking note of your symptoms.
You do not yet know whether your are Thyroid Hormone Resistance and I will give you a link from a Scientist who had THR himself. It might be helpful. Read 'Safely getting well with Thyroid Hormones'. He took all his dose once daily, in the middle of the night as nothing interferred with the T3 before or after taking it.
He stated that a once daily dose was preferential as T3 has to saturate all of the millions of T3 receptor cells in our body which then sends out 'waves' and effect of that one dose lasts between one to three days.
Also Dr Lowe recommended increasing every two weeks by a 1/4 tablet, so I am assuming (he'd never prescribe levo) because of the levo dose you take i.e. 100mcg, I'd take 1/4 tablet of T3 every two weeks because 25mcg of T3 has the action of 100mcg of levothyroxine which might be a bit too high. It is always better to be cautious.
Apologies Rachel 1958. You should still raise by 1/4 tablet T3 every two weeks until you feel symptom-free. If you feel over-stimulated drop to previous dose.
You really should only be increasing T3 by 1/4 of a tablet at a time. Going from 50mcg (equivalent of approx 200mcg Levo) to 75mcg (approx 300mcg Levo) is a massive jump, it may be way too much and you could get symptoms of overmedication, and of course you could actually miss your sweet spot. My advice would be to be thankful you haven't been ill by jumping in at 25mcg and increasing to 50mcg after 2 weeks, and to now slow it right down.
Personally, I would have retested 6 weeks after the increase to 50mcg.
I have done the high T3 only protocol of Dr Lowe (practitioner mentioned above by Shaws re THR) who believed it helped those with fibromyalgia. But unlike you I had been on levothyroxin only for 14 years; and still had lots of symptoms: low basal temp ( 35.5 - 35.9 C), all over pain/ weakness, exhaustion, high pulse...yet good to optimal ferritin, folate, Vit D, b12 etc. So initially added T3 to levo. at tiny 1/8 th of a 25 mcg pill and 9 months later got to 75 mcg T3 only, but not felt much different ( stiffness in hips that stopped me walking went almost immediately). Bp, pulse altered fractionally as learnt under medicated and overmedicated produced similar rise as put dose up, and basal temp. only shifted to 36.2C. Never got any other over medicated symptoms, and had wondered whether had Acquired THR...blood tests showed high FT3 (12.7 with range 3.10-6.80). Rather than upping T3 more tested for other possible causes like cortisol ( 1/3 in range low in am, but 2x plus what it should be other 3 test times), even reduced T3 to 50 mcg and added levo. back but got increased pain. So currently back on 50 mcg T3 only, and getting other B12 related bloods (MMA and hCys) tested as b12 symptoms yet high active b12 in blood. Just that all of those taking T3 have a very wide range of experiences...so difficult to advise you, presume you got your vits/ mins tested, and tried levo. to start to prove you needed T3?
Hugh Hamilton? Yes read his book...I ticked many of his boxes, but did not improve on 75 mcg T3, so thought I should try alternative route...might go 75 plus in future if can’t find relief anyway else! What are your FT3 results on these higher doses? Mine was 12.7 ( 3.10-6.80) on 75 mcg and rather concerned to increase it higher on DIY treatment.
Yes, that's him. And have just read up on Dr Lowe. I fit the THR profile very well and it seems to be working for me. I'm just so grateful.
I haven't done another blood test yet (since i started treatment) as I'll have to do it privately and it's expensive. But i will definitely do once i find my ideal daily dose. xx
Most people taking high doses of T3 do not see any point in thyroid blood tests. The TSH will be near zero and the Free T3 sky high.
I know someone who had a blood test done by an endo when he was taking 200 mcg T3 daily and his Free T3 was so high that the lab equipment could not measure it and they were concerned that it could upset the calibration of their equipment.
The endo could see that there were no signs of overmedication and just smiled - he could not believe that someone could take so much T3 with no negative impact.
Hi Hugh, yes I do know this re blood tests being rather useless for T3 only...but when you are completely DIYing you feel as though you have to have some reference to ‘judge’ something...i’d done the ‘diary’ recording of bp, pulse, basal temp and being aware of Dr. Lowe’s ‘scale’ recordings also kept details of how I felt too from pains, mobility, mental health/ forgetfulness, fine motor skills , sleeping etc. But got no obvious improvements( except stiffness in hips went within hours of first tiny dose, which allowed me to walk), nor deterioration, nor over medication. Have been on ‘waiting list’ to get Lowe’s fibromyalgia book from British Library for 9 months; your book just confirmed that I could well have THR, but thought since it seems recent may be ‘acquired’ (I had septic shock/ acute pancreatitis 4 years ago, subsequently diagnosed with fibromyalgia, and had wondered if this could have triggered something). Unfortunately I got palpitations etc when undermedicated, so difficult to use such symptoms for over medication. It has been difficult to find evidence that those taking high dose T3 only were getting high FT3 too, thus you will find forum members that get rather nervous at the 75 mcg dose and wonder if they are doing it right! You do see references to regular high FT3 as dangerous, rightly or wrongly. Do THR/ ATHR folks get common hypo complaints associated with Hashi ( I had very raised TgAb only 14 years ago), like low vit/ mins, and are there ways to rule out THR etc ( I have read Diogenes’ new webpage re ATHR)?
"you have to have some reference to ‘judge’ something"
I do not know how you can use blood tests for this. To get a picture of the true Free T3 level you would need a blood test soon after taking it, but most people wait for at least 24 hours before blood tests. Either way it is not really of any benefit.
Lowe’s fibromyalgia book
I have this book but loaned it to a friend several years ago and never got it back. It is very technical and repetitive and is aimed at persuading doctors. I don't think it will help much beyond Dr Lowe's information available online or in my book.
it seems recent may be ‘acquired’
People with the condition are born with the genetic defect but generally live normal lives. It is generally a shock such as illness or stress which brings on the severe symptoms.
regular high FT3 as dangerous
People with hyperthyroidism have high FT3 and because untreated hyperthyroidism is dangerous doctors assume that high FT3 is dangerous. This is wrong!
It is not the level of FT3 which is the issue, but the metabolic rate - if the FT3 is causing very fast heart rate etc that is dangerous. However if the FT3 is high but the metabolic rate is normal then there is no danger.
are there ways to rule out THR
If someone is hypothyroid but not THR then they should feel well with a Free T3 in the upper half of the range. If they need FT3 near the top of the range or above range it points to THR.
As THR is genetic family history can also be a pointer.
Thanks for this...suspected Dr Lowe’s book might not tell me much! My desire for testing ‘to judge something’ is really like a thumbs up...but if everyone gets a high FT3 then it makes no difference. Haven’t got the money to spend on genetic testing, especially when you get the impression endos take little notice anyway, and come from only-child descendants so no aunties, cousins etc etc... I think my mother had/has hypo problems but at 95 she is not keen to have tests, my father a physician himself asked dr. to do thyroid tests and I asked what had been done then (10-12 years ago)...surprise surprise it was TSH and ‘normal’...but remember lots of her symptoms from tinnitus, to feeling very cold.... So my sepsis could have been the trigger...certainly feels like pre- sepsis and post- sepsis period of chronic poor health but then that extra 5 years can make a difference too. At the moment exploring other ailments causing symptoms...including poor sleep (from ‘ fibromyalgia’ pain and bladder wrongly messaging ‘full’) and son given me some Cannabidoil which I think is giving me deeper sleep than had in years, so might repair body!
Does your son have a low heart rate, blood pressure or temperature? These may be present even when a person has good health.
Recently a man about 40, who seems fit and does park runs, mentioned that he has developed tinnitus. I asked if he had thyroid issues or a low heart rate. He replied that his heart rate is 50. He obviously has a thyroid problem but will never get a doctor to diagnose it.
In relation to your health Dr John Lowe found that T3 dosages ranged from 50 mcg to 500 mcg although most require dosages only between 100 and 150 mcg. It may be worth trying an increase.
"Unfortunately, we can’t determine when we first evaluate a patient whether she has thyroid hormone resistance. We can only suspect that she might. If she has a diagnosis of fibromyalgia, chronicfatigue syndrome, or ME, this means that she has symptoms typical of hypothyroidism or thyroid hormone resistance.The symptoms, of course, are also typical of other possible conditions. The most common ones are multiple nutritional de-ficiencies, cortisol deficiency, low physical fitness, or the use of metabolism-slowing drugs. Any of these may cause symptoms re-markably similar to those of thyroid hormone deficiency or resistance:-
and
"We want to emphasize that our patients use plain T3—not sustained-release or timed-release T3. They take their full dose of T3 on an empty stomach (one hour before a meal, or three hours after) once each day (see Figure 1).When thyroid hormone resistance patients use T3, therapeutic effects from a newly increased dose may occur within several days to a week. It’s reasonable for these patients to re-evaluate the intensity of their symptoms a week after they increase their T3 dose (seeChapter 3).We can’t give a specific starting dose for patients in general. It varies for different patients, depending on their health status,severity of their symptoms, and other factors. Many patients, however, start with what the clinician calculates to be a full replacement dose—one that provides all the thyroid hormone a normal thyroid gland would produce to regulate metabolism. The patient’s doctor should help her calculate an appropriate starting dose.From the starting dose, the patient gradually increases the thyroid hormone at intervals that may vary from several days to a week or two. She increases her dose based on her doctor’s calculations; the amount of each increase is most often small. Gradually,through these increases, she reaches what we call her “therapeutic window”—the dose at which she has no symptoms of overstimulation, and her hypothyroid-like symptoms improve or disappear altogether. In most cases, her therapeutic window involves doses of T3 that would overstimulate people whose cells respond normally to thyroid hormone.
Dr Lowe believed fibro, ME, or CFS, which were only named about ten years after the introduction of blood tests and levo, were due to thyroid hormone resistance. Before that we were diagnosed upon clinical symptoms (no blood tests invented then) and given dose of NDT (T3, T2, T1 and calcitonin) which was raised according to symptoms until we had none.
I'm glad you're well on T3 as I am and quite a number of members too.
Yes the fibromyalgia diagnosis on top of far earlier hypo/Hashi diagnosis, with FT3 stuck in 40% range, is what prompted me down Dr Lowe’s T3 route, but not worked up to 75 mcg so at moment going down other avenues!
It might not be THR, but central hypo. I wouldn't have started on 25mcg, but if you feel OK, perhaps it is THR. Don't increase too fast as you may miss your sweet spot. ie don't go from 25 to 50 to 75 - just increase by 5 mcg at a time about every 2-4 weeks
Symptoms: suspected i had hypothyroid for years - really feel the cold even in summer, exhausted ALL THE TIME, very poor sleep quality when i manage to sleep, unexplained low ferritin for years, dry scaly skin, mild depression, no get up and go, gained weight over last 5 years or so, unexplained muscle aches, the memory capacity of a goldfish, constipation despite good diet, etc.
Even i can see TSH is too high! and i know B12 is - but i take a supplement ,which explains why it is. So not bothered.
hs-CRP 0.93 <5.0 mg/L Ferritin 81.1 13 - 150 ug/L
Thyroid Function
TSH 3.77 0.27 - 4.20 mIU/L
T4 Total 105.0 66 - 181 nmol/L
Free T4 17.60 12.0 - 22.0 pmol/L
Free T3 5.31 3.1 - 6.8 pmol/L
Immunology
Anti-Thyroidperoxidase abs 11.0 <34 kIU/L
Anti-Thyroglobulin Abs 18 <115 kU/L
Vitamins
Vitamin D (25 OH) 111 Deficient <30 nmol/L Insufficient 30 - 50 Consider reducing dose >175 Vitamin B12 H 641 Deficient <145 pmol/L New range Insufficient 145 - 300 Consider reducing dose >569
True. I really don't fancy rocking up to my GP and announcing i'm self treating,though! Although, of course, the fact that i'm responding so well is the proof i have THR. Did you see my results i posted further up?
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