Curious to hear from people taking slow release t3 please. I feel terrible on NDT and felt worse on t4.
Slow release t3 experience : Curious to hear from... - Thyroid UK
Slow release t3 experience
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Rhannii7
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SeasideSusieRemembering
Rhannii7
We don't have slow release T3 here in the UK. Hopefully one of our overseas members may have some experience of it that they can pass on to you.
shawsAdministrator
One of Thyroiduk's Adviser and expert on the use of T3 died through a bad fall but he stated on his website that one daily dose of T3 saturated all of our T3 receptor cells and the effect of that one dose could last up to three days. Of course we have to take a one daily dose which should be sufficient to alleviate our clinical symptoms.
There is no background about your journey to be diagnosed with hypo on your personal page. The following is an excerpt from Dr Lowe's link below:
"Relief of symptoms and better well-being are sufficient for many patients. However, some patients get optimal results only when they also include physiological measures in their treatment regimen. I know some patients who obtain hand-held indirect calorimeters and actually measure their own basal metabolic rates. I know of no other physiological measurement that is more meaningful and useful. There are other relevant and useful measures, though, such as the basal body temperature, basal pulse rate, body weight, and perhaps the voltage of the R-wave on ones ECGs/EKGs.
In finding their safe and effective (optimal) thyroid hormone dosage, some patients use all of these physiological measures and they estimate of the intensity of their hypothyroid symptoms at close intervals to learn whether a particular thyroid hormone dosage is moving them in the right direction. And if they started out with high antithyroid antibody levels, they measure these again at intervals to ensure that their thyroid hormone therapy has acceptably lowered the levels. For Dr. Lowe, patients monitoring their responses to thyroid hormone therapy with these tools constitutes the best of outcome testing, which, in his experience, is more likely to provide patients with optimal treatment results."
Dr. John Lowe was a long-time thyroid and fibromyalgia researcher and practitioner, and Editor of the journal “Thyroid Science.” Dr. John Lowe’s websites: drlowe.com, thyroidscience.com Source: Email interview with John Lowe December 2010
shawsAdministrator
One of Thyroiduk's Advisers took T3 himself but didn't recommend slow-release T3. He was also a scientist/researcher and expert on T3.
He stated that we should take one daily dose of T3 and it then saturated all of our T3 receptor cells which then sent out 'waves' throughout the 24 hours of the day'.
I've found that method suits me
Ok interesting the problem is that im hypersensitive to medications hence the slow t3 recommendation. Im on pig thyroid at the minute all feel wired and all my hair is falling out. Ive tried all forms of t4 nothing works, im so ill all the time. Im desperate.
I understand Rhanni and experience sensitivity to medication increases across all meds. I'm currently trialing slow release t3 (in combo with t4) and am not having a good time with it. Im now told regular t3 is recommended, rather than slow release. I can't explain why but I think I'll switch to it and try.
I think ordinary T3 is more 'helpful' than slow release T3.
Dr John Lowe (deceased due to an accident) was an Adviser to Thyroiduk) and was also a scientist/expert on T3 and would prescribe T3 if patient was 'resistant' to thyroid hormones.
He stated that T3 had to saturate all of our T3 receptor cells (we have many and brain and heart contain the most). and T3 then sends out 'waves' that may last up to three days.
I trialled this myself i.e. took one dose, took none on day 2 and day 3 and I still felt fine.
Thanks for this Shaws, I'll definitely get my hands on some. Fingers crossed.
Hello, how much was your 1 dose? Thanks
I've never needed a high dose and used to take 25mcg T3 now I take 20mcg when I awake and swallow with one glass of water. I then wait an hour before I eat. I have no clinical symptoms at all, I feel well and have normal health. I also have a couple of other autoimmune conditions and I have regular B12 injections as I've also got pernicious anaemia.
If you click on my name it will take you to my 'personal page' and I've put my history in it,
My body couldn't tolerate levothyroxine.
Thank you , my story sounds similar, I trialed a slow release 35mcg of t3 and couldn't breath. Back on ndt until Paul robinsons book arrives. Nightmare total, my dr doesn't know what to do, im giving the endos a miss as ive seen 8 of them and all useless, ive developed multiple sensitivity to food and tablets , the t3 available in Australia has lactose and acascia in it both triggers, I have compounded t3 ready to go, pretty sure I'm reacting to both available capsules gelatine and cellulose. Im seconds off loosing my job, my life is wrecked, the ndt is causing joint pain and God knows what else. I have severe tmj which is wrecking my life.
It is true that your are not in a high dose. It is great that it works. But I didn't understand, have you another treatment for your polyglandular syndrome 3?
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Also Dr Lowe took and advised huge doses. If you are in the t3 only fb you see that people is around 100mcg. I never tolerated levo, not much t3 either. No more than 25 and a half. I m very syptomatique homebounded and underdosed certainly, I suppose that I have I kind of intolerance or a kind of resistance.
Your first sentence is wrong as he never advised large doses.
I know nothing about FB and have only ever read Dr Lowe's advice and he was also an Adviser to Thyroiduk.
Dr Lowe did not prescribe larger dose of T3 for all his patients. He himself had to take a larger dose because he was 'resistant' to thyroid hormones and that was how T3 saturated all of his T3 receptor cells of which the brain and heart have the most. It also enabled him to function as a researcher/expert on T3/resistance. He prescribed NDTs of T3.
He would never prescribe T4 as he stated it was due to 'finiancial rewards' given to Endocrinologists to prescribe levothyroxine that affected the reduction of NDTs
I am fit and well and symptom-free thanks to Dr John Lowe (RIP) who is missed by all of his patients who recovered their health following his method.
My once daily dose of T3 was higher but is now 20mcg daily and I am symptom-free and feel normal with no clinical symptoms.
25mcg of T3 is equal (approx) in its effect to 100 mcg of levo.
Dr Lowe's family background was that his father and his father's brothers took their own lives and he was fully aware of the effects/distress caused to tamilies.
Dr L began researching when a teenager for reasons that can/could cause suicide.
25mcg of T3 is approx equal to 100mcg of T4, so it seems to be that those patients whose body is 'resistant' require a higher dose than would be normal.
I have - a llittle whle ago - been diagnosed as having a Polyglandular Autoimmune Disease as that covers, alopecia areata (lost all hair and there's no way I can restore it) pernicious anaemia (get regular B12 injections every month (my Mother had pernicious anaemia too but her doctor stopped her B12 injections and told her that her blood test was fine and she needed no more injections.. Both my sister and myself thought that was good (no internet to check things then) but that decision by the doctor caused my Mother to develop stomach cance that caused her demise..
I used to get B12 injections quarterly but new GP said I can have as many as I think I need.
Thank you, it is true that Dr Lowe took large doses for himself. I don't really know what he prescribed to any different patient. I have great weight gain on 25. Seems not working for me. I need more. Best Regards.
What do you mean when you say "He prescribed NDTs of T3?" Are there natural dessicated thyroid T3's?
think shaws meant to write he prescribed NDT's 'and / or' T3 , not NDT's 'of' T3.
No there isn't a separate 'natural' T3 .. just NDT which contains T4 and T3 together. from pig / cow thyroid glands.
OK thanks! . It was wishful thinking on my part! 😅 I'd much rather be taking a natural source of T3 than the pharmaceutical ones!
I also take large doses of T3, but I split it into 5 times a day! I take a total 230mg Tiromel plus one Metavive II (and I only weigh 53 kg)! If I was to try taking it all at once how would I go about making the change?
Canu . That's a heck of a lot of T3 ... what has it improved , symptom wise ?
is your fT3 now very over range when you test after 12 hrs ?
( i assume it must be because it was already over range by a little bit back when you were on 1.5grains NDT)
If you took 230mcg T3 all at once presumably your peak level in the blood would be extremely high for a few hours ~ which may, or may not be a problem ~ diogenes posted a study a while ago suggesting it might not be. Can't remember which , sorry but have a look on his profile page at his list of posts and you'll probably find it .
To be honest, it has only improved one thing: I feel calmer. I suspect that it's the lack of T4 that caused this rather than the improved T3 levels. Still have fatigue, tinnitus, dry eyes, double vision, muscle wasting and fibromyalgia.
I haven't checked T3 levels after 12 hours. If I wait that long to take T3 I won't be able to get out bed. For my last test, blood was drawn 5 hours after my last T3 dose and 24 hours after last Metavive II dose:
TSH <0.01 (0.27 - 4.20)
Free T4 5.78 (12.00 - 22.00)
Free T3 47.49 (3.10 - 6.80)
Reverse T3 129.2 (90.00 - 215.00)
Canu , Free T3 47.49 (3.10 - 6.80)
That fT3 level would concern me a lot , even after taking into account that it was tested 5hrs after last dose.
if you are not getting any real benefit symptoms wise , are you sure it's worth the risks of having such a high fT3 level ?
( muscle wasting could well be a symptom of too much thyroid hormone , and so could fatigue )
I would strongly suggest you write a post asking for advice from experienced members re. your current 230mcg dose of T3 and the safety (or not) of your extremely high ft3 levels .
Edit: tagging greygoose DippyDame SlowDragon i was worried about this ft3 level and high dose and thought it would be a good idea if someone more experienced than me had a look at @Canu 's replies here .
The muscle wasting happened when I was on T4 only and monitored by a doctor. But you got me worried there. I will ask for advice. Thank you so much!!!
Do you have Hashi's?
Have you had your nutrients tested: vit D, vit B12, folate, ferritin?
And - a shot in the dark, here - do you eat much in the way of unferemented soy - tofu, soy protein, soy milk, etc.?
Is your FT3 always that high on previous tests?
Hi! Yes I do have Hashi's. Vit D was 85 ng/mL (a bit too high)
B12 I tested a few months ago and was slightly above range.
Folate was right at the top of the range a few months ago.
Ferritin this time was 321 (13-148)!!! (compared to 150 a few months ago)
I don't eat soy.
FT3 was previously 14, but this was when I was taking more Metavive and less T3, and also, I had taken last T3 dose more than 8 hours before blood draw, whereas this time I took it 5 hours before blood draw.
Funny thing is, I keep checking my temperature and it's never too high.
Temperature is not a reliable guide to anything thyroid related. Some people's temperature never rises. So, that doesn't mean much.
Even 14 is over-range.
Yes, I realise you took your FT3 just eight hours before the blood draw, but not sure that could account for such a high level. Could be a Hashi's 'hyper' swing, but do you feel hyper? The symptoms you've listed are very vague, could be either under- or over-medicated.
I was once on 225 mcg T3, and thought I was still hypo. It's a very complicated story, but you can read it on my profile, if you're interested. However, the point is, when I was on 225 mcg daily, circumstances caused me to stop my T3, and all my supplements, for six months. After six months, I was obviously very hypo, but my only symptom was weight-gain. So, I started on T3 only again, and worked up slowly, and found I only needed 75 mcg. Any more and I felt hyper - tremble in the hands, etc. Any less and I felt hypo - crocodile skin and anxiety. And, I've stayed more or less on that dose for eight years now. It is so very easy to miss one's sweet-spot, that I really would suggest slowly reducing your dose - not cold turkey, like I did! - and see if you reach a point where you feel better.
One thing that puzzles me, though: why the Metavive?
Thank you! The reason I also take some Metavive is: I took only Metavive before I started slowly reducing it and adding T3. I was afraid to stop the Metavive entirely cause I wasn't feeling much better by reducing it. I will reduce T3 dosage and see. Thanks again!
Let us know how you get on. 
Just noticed your post ...ouch FT3 47.49 Heading up the wooden hill now but will have a look in the morning.My highest dose was 212.5mcg but it soon became obvious that was too much!!
I would be very concerned at such high Ft3
Would recommend you work on (slowly) reducing dose so that Ft3 is within range
It can be extremely difficult to tolerate reducing dose
I keep checking my temperature and it's never too high. Is this a good way to check if you're overmedicated?
Also, I took my last dose of T3 only 5 hours before blood draw. (If I waited more, I wouldn't be able to get out of bed)
Suggest you write new post about your situation rather than hijack this one
With info on vitamin levels, supplements etc as well
Yes, you're right! Sorry! I keep getting replies on this one and get carried away!
Canu I need high dose T3 -only to function...it took me a long time, much reading and experimenting to find this out.
Medics and many tests and treatments failed to resolve my problem
I have a form of Thyroid Hormone Resistance which I've likely had all my life.
My max dose was 212.5mcg up to that stage I was tolerating the increasing doses....
I lost a lot of weight, including some muscle tone!
I self source and self medicate T3 but at an annual review my GP was alarmed by my labs and insisted I lower my dose.
She ordered a scan which showed a healthy heart.
I wasn't convinced about the dose reduction but in a spirit of co-operation !!! agreed to lower the dose to 50mcg for a few days then to start slowly increasing the dose again.
Long story, short...
I now manage on 100mcg which I take in a single dose at bedtime.
We don't know the exact hormone content of Metavive 1 so we cannot calculate your total T3 intake...but clearly in excess of 230mcg which I would suggest is concerning.
Why are you taking Metavive 1?
Do you know if you have a form of Thyroid Hormone Resistance.( RTH)..it certainly looks that way otherwise you would be very unwell on that dose.
It sounds as if you have lost weight and you mention muscle wasting which is a symptom of overmedication.
RTH means that resistance exists which is preventing T3 from ( adequately) entering the cells.
T3 does not become active until it reaches the nuclei of the cells via T3 receptors.
The T3 in the serum that fails to enter the cells just sloshes around in the serum and is eventually metabolised and excreted via bowel and bladder. ...it does not become active so does not fulfill it's function.
Taking a high dose acts like a battering ram against the cells and that force enables some of the dose to be pushed into the nuclei ...active T3 specifically supports brain function, heart function, and digestion, and it plays a role in your metabolic rate and bone health.
Low cellular T3 = poor health.
Your weight is low and your muscles are wasting which suggest more than enough T3 is reaching the nuclei and a reduction is worth considering to prevent damage to the body
The idea is to find the lowest dose that is effective...not the highest dose you can tolerate!
It is also possible to experience the converse effect of T3....that is overmedication feels like undermedication!
Very important to check your resting heart rate...I do this at least once daily.
My resting heart rate sits around 60 bpm.
Do you check for hand tremors ( not shakes)....arms outstretched, palms down thumbs almost touching...lay a sheet of paper over the backs of your hands and any tremor will show as movement of the paper.
Temperature is not thought to be the most accurate guide to medicating T3
I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome when medics could not work out why I reached the stage where I could barely function...I'm now convinced some of those symptoms were the result of low cellular T3.
It is perfectly possible that you might need high dose T3, though I would be concerned about your dose particularly when you say you feel little improvement....and show signs of overmedication.
We are all very different so I can only refer to , and share, my own experience and to what I've learned during my very long and rocky thyroid journey so I'm not in a position to tell you what to do but I would urge you to very carefully review your T3 dose.
My thyroid journey is related in my bio should you be interested.
Some links you may find helpful...
frontiersin.org/articles/10...
thyroidpatients.ca/2019/08/...
healthrising.org/blog/2019/...
rejuvagencenter.com/thyroid...
Sorry this is rather rushed but hope something resonates with you
Rant over!!
Good luck
It’s a month later how are you doing and what dose of T3 are you on now?
Oh so sorry. Thank you for the update. It’s a tough road isn’t it! I wish you well.
Thank you, its been 5 years of utter hell, nothing works, im on ndt and my hair and skin is so dry, I feel terrible, anxiety, hair falling out. Im so sick of this disease. My eyes are all swollen
I have had this for many many years but last seven pure hellll. Syn quit working for me and couldn’t get the NDT figured out so went thirty days ago to t3 only. It’s such a tightrope. I almost spend more time laying down than upright because I feel sooooo awful,. Hair falling out, dry skin, acne, extreme fatigue. I had quite high Reverse T3 so I know that’s part of the struggle. So many people say t3 was magic for me and felt so good three days afterwards! I am still waiting for that magic!
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