Thyrotoxic multinodular goitre 2018, RAI 2019, hypothyroid/desperate/suffering ever since :)!
Have tried T4 monotherapy, T4/T3 combo, and have managed to achieve pretty 'optimal' on paper thyroid results using Levo 75mcg T3 37.5mcg:
TSH 0.08 mU/L (Range: 0.27 - 4.2)
Free T3 6.84 pmol/L (Range: 3.1 - 6.8)
Free Thyroxine 13.600 pmol/L (Range: 12 - 22)
Reverse T3 >200ng/dl (Range: 8 - 31)
However I separately tested Reverse T3 for the first time, in an attempt to pinpoint the source of my debilitating hypo symptoms (I consistently have low waking body temp to support that it is the thyroid). You can see it is absurdly above range - literally above the maximum possible to register I believe. Unfortunately it is very expensive to run again straight away (and 3 week turnaround) to double check to see if it is a lab error.
After much consideration, I have since titrated down my Levo and have commenced T3 monotherapy. 3 weeks of no Levo and having uptitrated to 50mcg T3, I have the following results (I know it is early days):
TSH 0.52 mU/L (Range: 0.27 - 4.2)
Free T3 7.48 pmol/L (Range: 3.1 - 6.8)
Free Thyroxine 3.83 pmol/L (Range: 12 - 22)
My symptoms here are still overtly hypothyroid including low body temp (I know too well what hyper feels like). This makes me believe that the RT3 theory of receptor blockage is at least somewhat true in my case. How on earth an I feel so hypo with a T3 that high? My iron, cortisol, and other markers look good, and I can't seem to be able to pin it on anything but the elevated RT3.
Have I missed anything or am I doing the right thing in persisting with T3 monotherapy to clear the RT3 over the next month or two in order to feel better. If that happens then I may introduce a modest dose of Levo in the future to see how that goes.
Does anybody think I have to increase my T3 further in order to fully suppress TSH and thus endogenous T4 production to stop any conversion to RT3? Or will clearance be successful with my current numbers?
Any advice welcome, I am really doing this as a last resort as I can barely cope any longer. Thanks guys
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I am in a similar boat to you, in so much that I had reached pretty much normal T3 levels but had felt no improvement in symptoms.
I had an RT3 of 70ng/dl, but this was only taken a few weeks after beginning T3 mono therapy. I have now been on 120mcg T3 only for about two weeks, but as yet no noticeable change in symptoms. I am hoping it will come.
Out of interest, are you aware of having done anything linked to high RT3 levels? How do you find weight management?
Do you know what caused your elevated RT3? 120mcg T3 seems like a lot compared to my measely 50mcg haha! What do your thyroid numbers look like on that (if you have tested).
I remember an acute period of stress all the way back from the beginning of covid where I was working in A&E. It was prolonged and my symptoms may have gotten worse since then but its a tenuous link.
I think the high RT3 is when I pushed my T4 right up from 75 to 112 as an experiment. Felt improvement intially and then it declined into hypo symptoms - I'm suspecting from the increased RT3 conversion which has remained and I'm now trying to clear!
Weight tends to fluctuate on me. I am a 28 year old male reasonably in shape with the help of testosterone replacement and gym when I muster the energy. How about yourself?
Hi thanks for the response! Yes thankfully aware of that difference can be an easy mistake to make. I am above the normal range yep, but still very hypothyroid symptomatically (and low body temp). This leads me to believe the high RT3 has something to do with this either directly or as a proxy marker for a deiodinase 3 enzyme issue for example. If my T3 is that high there must be some other reason it is not getting to my cells
Many say they manage well if FT3 in top part of range and are not affected by low FT4.
Others say they need both FT3 & FT4 to be good in range.
Looks like your FT4 was low and FT3 top of range when you switched to T3 only. Making the FT3 higher & FT4 very low which may be the reason for your symptoms?
You may also be making too many alterations too quickly. It takes 6 weeks in a continuous & consistent dose see how the dose ultimately settles.
There’s is also a varied complexity of hyper / hypo symptoms. Your high FT3 may be giving hyper symptoms but you experience hypo type symptoms.
Do you have a Fitbit type tracker? How is heart rate, this can be a good indicator.
Im not clued up on RT3, but I’m sure I read on here the theory that RT3 blocks receptors is not supported. Hopefully someone with greater knowledge be be along to explain the science.
I managed to go hyperthyroid when I was doing combination T4/T3 therapy, and had a very distinct set of symptoms. This was from bumping T3 dose up quite sharply.
I track my temperature and heart rate/BP etc. My waking temperature especially always clocks in low around 36.1 degrees. When I was hyper this was always well above 37. I find heart rate is a tricky one because obviously it is high when hyper, but also high when I am hypo as the body is compensating with increased adrenaline
I've just reread my first post to your first post some years ago :
So, I see you have started self medicating with T3 and hope this goes well for you :
I think it inevitable that you will have high reverse T3 after a period of hyperthyroid activity
and I believe this will then be compounded by treating with T4 thyroid hormone replacement and compounded further by treatment in primary care on just a TSH reading which is totally inappropriate.
In a " normal " " healthy " individual excess T4 is turned into reverse T3 by the body which is lost through the body's system leaving you back at square 1 ready for a new day and the body's checks and balances all over again.
When hyperthyroid you are in overdrive and excess T4 is building as is reverse T3 - and the system is like a boiling saucepan - the vent in the lid isn't doing enough, so you take the lid of, and / or cut the heat to the saucepan and turn it off.
So you take the AT meds and or end up with either a thyroidectomy or RAI thyroid ablation.
Your whole body is likely to still be in some trauma from everything having been over stimulated and needs time to recover and rebuild.
You are then prescribed T4 at a guess estimate of around 100 mcg and dosed and monitored on a TSH which doesn't tell anybody anything when you haven't a thyroid as your HPT axis is now not working since your thyroid has either been surgically removed or burnt out and disabled in your neck and can't respond, as the end of the Hypothalamus / Pituitary / Thyroid feedback loop.
T4 thyroid hormone replacement needs optimal vitamins and minerals to work well and convert to T3 in the body.
RAI is known to trash vitamins and minerals :
Increasing T4 thinking that's the answer only compounds the problem and likely results in more excess T4 being made into reverse T3 as your body isn't able to convert it into T3. until your vitamins and minerals are optimal.
RAI treatment slowly burns out your thyroid in situ but also to a lesser extent is taken up by other glands and organs within the body including the gonads - and other T3 receptor sites throughout the body that can leave the patient with symptoms similar to those of fibromyalgia / chronic fatigue, and Sjogrens Syndrome.
I think I've gone around in a circle which is what happens in a healthy body as we all have a level of reverse T3 - it's normal and it's healthy and relies on a fully functioning working thyroid working to balance out the hormones.
Without a thyroid you need to be putting in your own fuel everyday which can be a challenge as you can't always second guess what fuel you need one any given day.
Ignore the TSH - it is irrelevant if you haven't a thyroid - and not accurate measure of anything once on any form of thyroid hormone replacement.
I had reverse T3 - after 10 years on monotherapy with T4 and managed and dosed on a TSH in primary care, after RAI thyroid ablation in 2005, and became very unwell.
I tried a T3/ T4 combo but couldn't find anywhere close to where I needed to be but kept thinking my T4 had o around 100 mcg - so maybe why I felt turbo charged.
I don't know where my reverse T3 is now, i am just over 4 years into self medicating with Natural Desiccated Thyroid and take 13.50 mcg T3 + 57 mcg T4 - and am so much better and would imagine by having almost halved my T4 intake my reverse T3 has unblocked itself or become surplus to requirements.
All you can do is try all the thyroid hormone options and see what suits you best :
Hello again penny! Thank you much for taking the time to help me out yet again. You were so helpful and kind last time, and again this time.
It’s a wonderful summary you’ve given, I have spent the past 2 years doing pretty much none stop research trying to fix myself to no avail. Somehow through the nightmare I managed to get into medical school with the aim of helping to treat patients like us properly one day as a doctor. 1 semester in, but in my current state it seems challenging to imagine me getting through the next 5 years!!
Very interesting insight about how my RT3 would likely have been through the roof from my initial years of undetected hyperthyroidism - I hadn’t thought about that. My assumption is that it was sky high as a result of Levo conversion alone. In September I bumped by Levo up drastically from 75mcg to 112.5mcg and continued the additional 6.25mcg T3 I was taking. For a week I felt PHENOMENAL, near total symptom resolution, before it all came crashing down. Disappointing, but it did give me the 100% confirmation that my issues were thyroid related, which is what I needed.
Now, 3 weeks into my T3 monotherapy I have started feeling absolutely horrendous - despite my above range T3. Certainly hypo though, as I managed to push myself hyper with a sudden T3 increase in the past whilst doing T4/T3 combo and the symptoms were night and day different.
Now I’m unsure whether to try and see through T3 monotherapy for a minimum of 8 weeks and test to see how I feel + if my RT3 has come down.
I have never tried NDT so I think if I abandon T3 mono I may give that a shot.
Would love any advice you have to share. What would you do in my situation? I’m really at the end of my tether today. Thanks as always in advance. Hope you are doing well
Well a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1,T2 and calcitonin plus and measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
The thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
I think when you haven't the thyroid gland it's much more difficult the find the right balance of your T3 and T4 hormones. as the gland - and I liken the gland to your gear box - isn't there to regulate anything, and slow down, or pick up speed, according to what is happening during the day.
We read that people seem to feel at their best when their T4 is in / or towards the top quadrant of the range with their T3 slightly lower in its range and that the ratio of T3 to T4 should be coming in at around 1 / 4 - T3/T4.
Natural Desiccated Thyroid was successfully used to treat hypothyroidism for over 100 years and long before the " science of blood tests " which was introduced along with the guidelines and ranges by Big Pharma in the middle of the last century, on the back of NDT.
NDT is made from pig thyroid dried and ground down into tablets, referred to as grains, and you simply dosed to the relief of symptoms and was readily available and is still meant to be available on the NHS on a " named patient only " prescription.
NDT contains all the same know hormones as the of the human gland and has a fixed ratio of T3 and T4 in each grain/tablet, at around a 1/4 ratio T3/ T4 :
The T3 and T4 in NDT are bound to the protein thyroglubin which is slowly broken and digested in the stomach with the T3 and T4 then released into the blood stream which seems to me a much softer, more natural way.
My concern is if my Reverse T3 remains sky high, then I will inevitably run into the same problems I have had, using NDT or any other dosing combination?
So I am thinking of gritting my teeth in an attempt to get this RT3 down, then depending on how I'm doing ,will certainly be looking into giving NDT a try
Well, I don't think there is any point making yourself ill over something you can't really do anything about and which I believe will come down in it's own time and I don't believe has much to do with what you are dealing with.
Before I started self medicating I had to work on building up and maintaining my ferritin, folate, B12 and vitamin D at optimal levels.
I found Dr Peatfields book - Your Thyroid and How To Keep It Healthy a relatively easy, sometimes funny, amusing read.
He wrote the book for patients to enable them to treat themselves as he took NDT for hypothyroidism and was disillusioned with the way things had gone within the medical profession and Big Pharma.
The following link is from Paul Robinsons blog which identifies how low thyroid hormone often results in low testosterone and a lowering of D1 activity so reducing conversion of T4- T3.
The following link from Tania Smith explains how an up-regulation of D3 not only converts higher levels of T4 to RT3 but will simultaneously turn T3 to an inactive T2.
Just as it is yesterdays news that RT3 blocks T3 receptors so it is that high amounts of T3 will not clear RT3. And as a young male taking high amounts of T3 meds you also risk elevating SHBG that will bind more thyroid hormone leaving less ‘free’ available for cell uptake.
Have you had nutrients and iron tested recently as all thyroid hormone meds require optimal levels to prevent excess RT3. A good read is Recovering With T3 by Paul Robinson.
Thank you so much for the response. That second link especially is incredibly informative. I have had iron and nutrients tested in December and they came back at decent levels. Maybe I need to interrogate them again however.
So is the reason we want to prevent excess RT3, in essence, that it means our D3 enzymes are not upregulated, so we are able to get the level of T3 intracellular binding which we require?
Yes, the deiodinases are enzymes controlling thyroid hormones activity/deactivation, but we also require the right balance of T4, T3 & RT3 to regulate them.
I agree with pennyannie above that what you are doing risks not reducing RT3 (or slowing the unregulated D3 enzyme) and even if it was to reduce slightly just because of the T4 reduction, if wouldn’t stay reduced because you haven’t addressed the root cause.
We address nutrient & iron deficiencies first because they are common in people with low thyroid hormone, and also because inadequate iron levels in particular are a common cause of excess RT3. Many members often find optimising helps their meds to start working better, but the situation is further complicated because iron is both a cause and result of low thyroid hormone, as many other conditions causing excess RT3 are.
Therefore, once we’re on that ‘get better’ road, other things all contributing twards the excess RT3 (or unregulated D3 enzyme) such as low levels of inflammation, gut issues, liver congestion all miraculously start improving and reducing excess RT3 levels further.
If elevated RT3 has been present for sometime, then it might be worth considering elevated cortisol levels which again will bring its own contribution towards further RT3. If & when meds, iron, nutrients & cortisol are all good, then other non-thyroidal causes would be considered and literally could be anything such as living with mould, food intolerances, elevated oestrogen, and is usually a combination of many factors rather than an isolated condition.
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