Hi, some of you will have read my other posts about having my med slashed by GP and deciding I'm going to try low t3 ratio to t4. But I'm just wondering about reverse t3 and whether it is worth considering clearing any reverse t3 first in case it's built and is causing me problems. I have m.e and I was on 200mcg of t4 and 20mcg t3 from about 2000 until 2008, then my t4 was dropped to 175mcg until 2012 and then to 150mcg from 2012 until my evil GP reduced all my meds to 100mcgs of just t4 two months ago.
For the first two to three weeks I felt the best I have since first hitting the m.e wall in March 2011, then the loss of med kicked in and I felt increasingly worse, worse, worse. Just wondering if my very high prolonged use of t4 could have lead to a build up of reverse t3 and could be significantly contributing to my m.e symptoms? Since blood tests are expensive and not necessarily relevant I am wondering whether it would be worth going total t3 for a bit, like doing a detox before trying my new regime?
If I did that how much t3 should I take alone and how long would it take to clear the reverse t3.
Any advice gratefully received. I will get my new bloods on Monday I hope, if I can extract them from the 1970's style receptionist! But obviously they won't have reverse t3 levels.
Thanks for very ones help and expertise, gratefully appreciated.
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It was a long time ago and my brain has been seriously messed with since due to the m.e brain fog, I know I still had significant weight issues, but my skin wasn't dry and my hair wasn't falling out, but then I did start to get tingling in my face in 2006 and was checked out for MS and now with my m.e hindsight I can see that was the beginning of the decline into m.e. A couple of major pops later, some massive doses of I've antibiotics and that really put the lid on the coffin for my health. Started having treacle days and other symptoms, ovaries went haywire and then bang one day found I couldn't get out of bed. It's been hellish ever since, lots of ups and downs but the ups only amount to a good hour, a good morning, can't be upright for more than 2 hrs at a time before is start feeling Iller and Iller. Ahhhhhhh so you can see why I so hope that what my GP did to me was both awful but may lead to a revision of things that may lead me back to better health. Who knows? Just can't tell.
I'm assuming you've had your B12 tested? And all the other things on Clutter's master list of 'must do's? It's really alarming to me, at least, that in Canada the lowest part of range for B12 is 134 pmol/l. My goodness! And the country average is low 300s. Lots and lots of people, especially vegetarians are in the high 100s. Meantime, optimum is 500 plus! Wow. So much for our much vaunted universal healthcare. The blasted doctors are telling women to take folate assuming they are. Meantime they don't test the B12................. It's dead easy to get high levels of folate. Not so easy to get optimal B12.
Being entirely subversive, I ticked the B12 box on the blood test requisition for yesterday's blood draw. It has not been tested since 2000 and then it was 315. Bahh. Someone here posted a fabulous video about B12. It was a major eye opener that's for sure.
I didn't feel better (from low B12 symptoms - brain fog, tingling, numbness, eye ticks, tinnitus) until my blood test B12 measured >2500. Active B12 test is a more accurate view of what your levels are.
Hi Angel_of_the_North , I know this is an old reply of yours but just wanted to ask you a question about this.
My active B12 result from September 2017 was >256.0 pmol/L. (25.10 -165.00), so I'd always assumed I had a more than adequate level of B12. But you're saying you only felt better when yours got to over 2500?? Or was that serum B12?
I'm trying to work out how to reduce horrendous brain fog. I've been thinking it's T4 toxicity. Of the B12 symptoms you mention I have brain fog & eye ticks sometimes. I don't get tinnitus but I do have overly sensitive hearing - hyperacusis.
I think it maybe time to change your doctor to one who may know what he is doing. It's a big mistake to adjust medication due to the TSH alone.
This is a link of which this is an extract re reverse T3:
1. A popular belief nowadays (proposed by Dr. Dennis Wilson) has not been proven to be true, and much scientific evidence tips the scales in the "false" direction with regard to this idea. The belief is that the process involving impaired T4 to T3 conversion—with increases in reverse-T3—becomes stuck.
2. Laboratory studies have shown that when factors such as increased cortisol levels cause a decrease in T4 to T3 conversion and an increase in T4 to reverse-T3 conversion, the shift in the percentages of T3 and reverse-T3 produced is only temporary.
Regarding your doctor adjusting your doses (according to your TSH level I presume) is most probably the cause of you still being unwell. Some quotes:-
A study by Fraser,[44] for example, showed that the TSH and free T4 tests—which Guttler uses—are in fact highly fallible. Fraser studied patients on T4-replacement. Of 108 patients who were free from hypothyroid symptoms—and any signs of overstimulation—53 (49%) had TSH levels below the lower end of the reference range
Go to date January 25, 2002 on following link re adjusting doses- excerpt:
Dr Lowe: Your observations don’t suggest to me that your pituitary gland isn’t functioning properly. In fact, your observations are consistent with what science tells us about a patient's T4 dose, her TSH level, and her metabolic health or lack of it. If the goal of a doctor is metabolic health for his patient, he has no scientific basis for adjusting her thyroid hormone dose by her TSH level. If the doctor is going to make the imprudent choice of treating the patient with T4 (rather than T3 or a T3/T4 combination), he should be aware of the relevant physiology and treat her on the basis of it. Otherwise, he's likely to ruin her health, as your doctor appears to be doing to yours.
My health has already been ruined and at that point I was on high t4 and t3. The cutting of both is recent and has simply taken me back near to where I was when I first got m.e three years ago. Since taking t3 alone clears reverse t3 I thought it was worth trying to see if it helped, just wondered how long it Wd take.
I did have adrenal saliva test by Genova or whatever they're called three years ago and it showed fatigue. Dr my hill suggested dhea supps that I started on, but wasn't convinced. I've done a lot of all the things suggested to rest adrenals since, endo went ape about dhea, did synaptic test or whatever it's called. Of course it came back normal, I've got m.e after all everything western meds do comes back normal!
I'm not sure what I think about all this RT3 stuff and 'clearing' it - also I'm not convinced by the T3 / RT3 ratio and I have serious concerns about T3 only - obviously there are different opinions but RT3 can be worsened by being on too high dose of T3 and too much T3 can cause other serious issues. You might be interested in this: tiredthyroid.com/rt3.html
And I'm not denying RT3 exists or that it slows down conversion, but more why it happens and what we need to do about it....personally I favour lowering the dose until you've other things going the right way rather than T3 only. I appreciate others feel differently.
I definitely had issues when I was on a high dose of T4 and a low dose of T3 but I also had major issues with anaemia, candida, gut, vit and mineral deficiency, sex hormone problems and sluggish adrenals... as I had very severe autoimmune T3 toxicity for years, my endo said that people like me have poor peripheral metabolism. I'm doing far better on NDT but it's not perfect either ... it's a bit of a headache, trying to work out which is the best way to tackle things.
No personally I m sceptical about a lot of things, but it don't see how being on t3 only for a couple of weeks Wd do any great damage if that's what it Wd take. Then if there was a build up of rt3 it Wd be reduced and if not no harm done, start afresh trying to find my correct calibration for t4 t3. From what uv said, ans so many other comments I've read here, Blanchard might be correct in his observations and perhaps 125mcg t4 or lower combined with 2.5 of t3 might serve me better than any other combo. NDT has a much higher ratio than that.
What I'm really interested in is - putting aside the what's and what nots - how much and how long to take t3 for in order to clear rt3?
I've got about half way through it, but brain fog means I can go no further today. Is the essential point that if rt3 is high because of imbalances if you sort those out the rt3 should come down, that it is all part of thee no balancing system? So that if I found my optimal balance no cleansing of rt3 Wd be necessary as the body would naturally reduce it to a better balance?
That's part of it, that RT3 is a natural phenomenon, that various factors cause it, including being on too much as well as too little hormone - or illness, or imbalanced co factors. That high levels of T3 can cause it, and that the ratio is flawed, and that there are other risk factors for being on T3 only (or too much T3) including other hormone imbalances, and it can mess up your congitive function, and that your brain and body needs T4 - it's not just a storage hormone. I'd persevere brain fog allowing - it is complicated, because thyroid physiology is complicated.
Also RT3 does NOT block the receptor ... that's a flawed idea too.
Too much t3 does not make high rt3..it is only made from t4. I have watched my labs for 18 months on t3 only with no rt3 and 13 months of rt3 being too high. Good luck finding out exactly what causes it. Inflammation can be the reason. My rt3 cleared 6 weeks after stopping t4. I have seen much evidence of high levels of rt3 causing hypo symptoms, no matter how much t3 was added and no matter how high the levels of free t3 were. Some only get well cutting all t4. That may mean blocked receptors.
That's not true I'm afraid, that's why hyPERthyroid people with T3 toxicity have very high levels of RT3. tiredthyroid.com/rt3.html Also if RT3 blocked receptors, it would therefore be impossible to be hyPER.
I appreciate it's contentious but it's biologically impossible for RT3 to block receptors ...
I have t3 toxicity right now, from being on t3 only and my rt3 is way underrange. My ft4 is non existent. When a person is Hyperthyroid from the thryoid gland spilling hormones, t4 is spilled also..that is why the rt3 gets high. No t4 equals no rt3.
My T4 never went out of range when I was T3 toxic - I was truly very very seriously ill with hyperthyroidism, it's not the same as inducing it with meds. We'll have to agree to disagree. I think RT3 is a red herring and I'm opposed to T3 only... that's my view.
I have read TiredThyroid..am very familiar with it. I have not done well on t3 only. My liver enzymes, glucose are high and creatnine is low showing muscle wasting..it has been a horrible nightmare. I have added t4 back at a lowish dose and dropped some t3, but now i'm swelling again, but also trembling and anxious, but bp low and heart rate gets low too, until i try to sleep, then it gets into the 90's. I don't know what to do.
I don't know, I'm still fat despite everything on paper looking perfect. My endo seems to think my peripheral metabolism is extremely poor. I'm beginning to think I'm on too much T3 relative to T4 (I feel dreadful with low T4, it really does seem to improve my mood). Sorry to hear of your troubles - it's a nightmare isn't it? I did horribly on T4 plus T3 and only did about two days of T3 only, only to feel worse. I feel massively better on NDT but also a bit overmedicated. About to test all again as my creatnine was also low-ish. My gums are also receeding (I had terrible dental trouble pre diagnosis, and then on carbimazole and post TT on levo).
I've read the Tired Thyroid blog and site but just ploughing through the book, it makes a lot of sense.
Were we chatting on the other forum? There's a lady there having the exact same issue? I'm doing vastly better on NDT - all the mucin on my arms is gone, I'm much more like my old self and whilst I'm still three stone up - my shape and water retention is so much better.
I think the other thing with T3 only (or too much T3) is that it sends the SHBG too high which then increase oestrogen and tanks testosterone - my SHBG is over range. I've just come off HC (which really did help with anxiety and the shakes at first) but think that didnt' help either and as I followed STTM protocols I think my dose was too high.
I have another desperate friend who did T3 only and she is in a right pickle, her liver enzymes are dangerously high.
How's your iron and do you do anything for adrenals?
Yes, it's a horrible nightmare and i feel very depressed now. My stomach and arms have myxedema, but i lost the rest and went down in weight on t3 only, but it is creeping back. I also had a Hashi's flare at the same time that i started t3 only and had diarrhea for 5 months. My gums are receding too and now are bleeding. My tongue is swollen, some indents from my teeth, but not horribly so. How is yours? I'm down to my normal weight, but still have the myxedema. I have had no appetite for months and can't sleep. My normal weight would be a Skeleton at this point. Our metabolism is slow, for sure. We are not on the right dose or combination. I'm hyper and hypo at the same time. I have never felt normally since 2010..2009, i was hyper for 9 months but didn't know what it was...it was terrible. I lost so much muscle and mine is wasting again now. I feel anxious and my muscles are shrinking and weak. I'm now on 62 t4 to keep the rt3 levels down and 31 t3, just went back up today because the swelling is returning, but don't feel well..nightsweats, trembling..but otherwise hypo. I may have to go back to 25 t3.
We have not spoken before. Hey, at least i'm not alone.
I have normal AM cortisol and the other 3x a day are 1 point below range. I take Licorice for that. My tests show i metabolize cortisone quickly. In 2012 a doctor put me on HC and i swelled up like a balloon, gaining 3 pounds per week and my BP went very high, switched to Pred and i became hot and sweaty and still held fluid, switched to medrol and my blood sugar and bp were high..so i weaned off . I feel i must not need it or it would have helped.
My SHBG was high when i was really hypo. Whatever that means. I feel like it's all hopeless. I don't know where to turn. I have only been on 62 t4 for 3 weeks. by that time i usually feel something. I will have to get tested soon.
T3 only is not a normal state. Is your friend with the liver enzymes, cutting her dose? I was only on 50-62 when my liver and blood sugar went bad.
My stomach is much much better after I went on autoimmune paleo and then paleo and got really diligent about gut and diet. Total bore but i had a good endo and also saw a private gastro and I did two rounds of metronidazole for parasite and sibo, two rounds of nystatin, one round of another antibiotic for another parasite (only three days worth, the gastro put me on it) and I take Symprove and Bimuno pre and pro biotics. I'm strictly gluten free now and I take digestive aids - digestive enzymes and Betaine HCL. I felt dreadful on antibiotics initially - in the first week - and then significantly better in the second week.
I also ate a lot of fermented foods - water kefir, unpasteurised sauerkraut and for a while I air frieghted in (on ice!) a special probiotic called Mutaflor from Germany which was good E-coli bacteria as my digestive test showed I had none. I also take S Boulardii on and off as it competes with Candida in the gut.
I was reading in the tired thryoid book that levothyroxine needs stomach acid to detach a molecule and NDT doesn't for conversion. Do you think your gut might be something to do wtih it? I felt a lot, lot better for all the gut stuff I did and I do seem to absorb better. Probiotics and keeping on top of candida (which can be worsened by HC) really helped my digestion.
I also have that MTHFR thingy (not sure how much of a red herring it is) and take activated B vits and Thorne Methyl guard to try and combat that. I also inject methyl B12.
I had to come back to live with my parents I was so ill, but this means any income I do have can go on my health (I rent out my flat and live on the rent!) and they've helped me too, I'm lucky, as I've been able to get other opinions.
I also take a little milk thistle in my herbal tea as most first pass thyroid conversion happens in the liver ...
I am one of those people that needs T4 to feel well and I only started to feel better in my head - depression, anxiety etc when my T4 came up around 20 ... however, I felt like death warmed up on both synthetic T4 only and T4 plus T3 despite the numbers being OK, life only really changed on NDT even though it's not perfect. For instance I had chronic (and i mean CHRONIC) constipation on 175 levo and 30 T3. My whole body vibrated, I could feel my pulse all over and I used to lie in bed either a) worrying I was going to die or b) hoping I would actually die as being alive was such a living hell. As I had my thyroid removed, I felt doubly vulnerable as there was no way out. I truly do know how dark and desperate that place is.
i think Adrenals had a lot to do with it also, and low iron - sorting out my iron levels (I take BlueBonnet Chelated Iron 27mg) but I needed an infusion at first. I seem to be maintaining now. I was on HC but now I'm just on glandulars ...
I take all the right vits and minerals and have just switched to food based vitamins but make sure I get enough selenium, zinc etc.
Sex hormones are getting better but I tried progesterone (for my zero prog and oest) BEFORE I'd supported my adrenals and my doctor kept telling me to increase the dose. The result was my prog fell even further (to less than 5) and my oesterogen went up to 800!! My morning cortisol also went up to 55 on the saliva test and was over 20 the rest of the day. I nearly jumped off a bridge at that point, I felt my own body hated me. Desperate doesn't even describe that point, my poor mother just watched me sob and sob and sob and sob ... horrific.
I had horrific mucin on levo, despite my blood tests looking good although my levels gradually fell lower and lower despite increasing doses. My endo at the time was convinced it was gut absorption .... I think that is true to some extent but I still felt utterly, utterly dreadful. I lost about half of my head hair on levo and all the hair on my arms and legs fell out, it's all grown back on NDT. i dont shake or vibrate, I can sleep, my heart doesn't skip a beat all the time, I can think pretty well.
The ratio of T4 to T3 is trial and error I think as too much T3 will activate an enzyme to increase T4 to RT3 ... it's a minefield. For me though, NDT is most of the answer I feel (apart from still being fat) and I certainly don't feel like I wish I was dead (which was my constant thought for a LONG time post op).
Re SHBG mine was LOW on levo, and is now HIGH on NDT. However other things can make it go high, including oestrogen dominance. See here: drgregemerson.com/fact-file... High SHBG can also bind thyroid hormones further worsening hypothyroidism.
I wish I knew what to say that would fix it, and i understand how utterly desperate it feels to be tired, sick, foggy and trying to figure it all out.
Keeping a diary helped me and only changing on thing at a time so I could track symptoms. I check in with Dr P (he's a good, good, kind man if a bit eccentric!) and he's got these great daily dairies that I use so I can back track.
I'm sure you know all this and I hope the TUK folks won't mind but Dr P wrote a fact sheet for TPA that I post here: tpauk.com/main/?page_id=1599
Hang on in there, it really is possible to get better I believe, I feel I am nearly there, I am a million times better than I was , I feel I am just fine tuning now, and no longer in the depths of despair. Naturally I'd love to lose 3 stone
Hi me again, I was just on the other forum and looked at the lady I thought was you (!!) and the thing you both have in common aside from all these horrific symptoms is .... LIQUORICE.
I googled it, it can cause racing heart and elevated heart rate in some people. Just a thought but when I was really, really sick (I think mostly T4 toxic as my body just couldn't use the levo, but also deficient in some key co factors) then adaptogens had a paradoxical affect and made me feel very very stimulated rather than calmed. Glandular adrenal extracts also had the same effect. Like I was plugged into the mains. Very very agitated and anxious.
None of these things have that affect on me now at all (and Dr P told me the idea that there is 'adrenaline' in some glandulars is a load of clap trap and even if there was adrenaline has a half life of two seconds). But ashwaganda, liquorice, ginseng, etc all sent me over the edge. I also crashed my electrolytes once by drinking too much dandelion tea.
It's just a thought but you could do an experiment and leave out all supplements bar the essentials (your Bs, C, D, minerals, iron, omegas) and just see how you feel? When I was sick and starting out on NDT I took the absolute bear minimum to keep me alive and added the others back in later.
I really appreciate you thinking of me and checking the other forum out! I feel so alone sometimes and have been, like you, praying and hoping i die if i don't get better, because this is no way to live. It is torture..horrible odd, frightening symptoms and the doc's treating me like i have a mental problem.. I'm so brain fogged, i just can't think well right now. Just losing my old body and my mind is so very sad. My body looks very lumpy and puffy. I hold alot of fluid and my skin is thick and won't pinch. I think those of us with Myxedema have an especially hard time getting our meds right.
I only take 75mgs of Licorice. Was told to do this by a Pharmacist who studied integrative medicine and compounding..he makes up my sex hormones. I have had these issues before starting Licorice, so i don't think that is the issue. I have forgotten it and feel no different. Like you, i have lost my progesterone and also, estrogen and DHEA. I have been on them for nearly 4 years, with no improvements. My symptoms come from my Thyroid meds or lack of hormone or too much. I don't know how on earth to get the meds right.
I have tried desiccated 3x and each time my swelling and anxiety got horrible at even a small dose, sweating etc..they just made me feel worse. That can happen with hashi's and dessicated . Sometimes it makes the Hashi's flare up and it does for me, for some reason. My food sensitivity tests show a low grade problem with Pork. I have stopped all dairy..milk and cheese. Tests show cortisol normal upon awakening and then 1 point under range the rest of the day. The tests show i use up cortisone rapidly, not cortisol..what ever that means, so Licorice should help, so they say.
I don't know what to do about the rt3. I have had 3 doctors who are alternative, tell me to keep my t4 intake on the low side, so as not to make too much. I have never made rt3 because of too much t3. But i have made it with t4. I won't to play it on the safe side and keep the rt3 down.. i can barely stand this any longer. I have been homebound since 2010, i rarely go out of the house because of symptoms.
I may have said this, that i am down to a normal weight, lower than i have been in 4 years because i have gone hyper on the t3 for nearly 6 months and had a hashi's attack after trying the dessicated, but my shape is not the same and i look lumpy. I did lose some myxedema and this is my first weight loss in 4 years. It is all swelling and fluid.
Hopefully some knowledgeable person will come along and help here.
All I meant was if you are taking a bit too much T3, as well as T4, the T3 stimulates and enzyme that converts the T4 to RT3 faster. I personally think RT3 is a red herring .... but the science makes my head hurt. T3 also speeds up adrenal hormone clearance. Again not saying don't take T3 but it's getting the balance right.
Which you already know and can't figure out, I realise ...
The other thing, sex hormones. When I went onto progesterone, before I'd got my body going the right way, and was still where you are now, it wrongly converted to more oestrogen and to cortisol. It was absolutely hideous. On the saliva test my morning cortisol was 55!! It was over 20 the rest of the day. My oestrogen went from off the bottom of the range to over 800!! Some people can't tolerate progesterone, others can after they've got the whole system coaxed back to life. The rule of thumb is sex hormones last not first. Do you take DHEA too? Again it creates paradoxical symptoms in some including anger, and despair like feelings. I think that in sick bodies, sometimes those hormonal cascades don't go the right way. I had to stop the progesterone and felt better in about 10 days (it can build in the fat and tissues even if it's not showing on tests). My prog and oest have now normalised, I take a bit of bioidentical T gel, and am about to test all again - sex hormones are my new hobby.
I'm sure I've asked but is your iron OK? Have you got results of a full iron panel inc serum iron and saturation %? Where's your ferritin, B12, D3, folate etc?
Finally, when you tried NDT what dose did you start on? As you are used to some T3 you could probably start on a slightly higher dose rather than the tiddly amount most start on, I started on 1.5 grains - you could probably start on 1 grain. I also had three attempts at NDT and felt horrific all three times - the last time was when the progesterone was also in the mix and I was on the brink of jumping off a bridge. Getting off the progesterone, getting on adrenal support really helped and getting my iron OPTIMAL (not just normal by crappy NHS standards) turned it all around. I also added a bit of T4 to the NDT for a few weeks whilst I got myself going the right way.
All my food sensitivities have gone now including a weird reaction to pork and like you my antibodies initially rose on NDT until I could get the iron high enough and then increase the NDT dose, they are now zero - this is super-important for me as I had cancer and antibodies are measured as cancer markers. I asked Dr P about the antibodies flare and NDT and he said in all his years of practice he's never seen it ... by which I mean that it invokes a permanent autoimmune response. I know others say that and I honestly was scared to death but it did all come right.
As my saliva test was relatively normal, I'd been advised that all was fine, but in the end I decided to do adrenal support. Dr P examined me and we decided it had to be that, I had all the signs and symptoms, had been sick a long time, been on carbimazole for too long, and been on my arse on levo and T3 for 18 months.
But that's me not you ...
But it was like shouting up from the bottom of a deep well - walking through treacle and the inbetween bit on NDT - on too low a dose, waiting to raise was horrific. But my mucin started to go, the fluid started to go, and the old me started to emerge. OK so I'm chubby - but I look like 'me' albeit a slightly bigger version. I've lost a stone in the last three months too, and now I'm off HC I feel better again.
People on the forums just did not know what to say to me, I was so distressed and in such a mess. It was a very, very frightening time.
Best wishes to you, I hope that helped and didn't confuse or exasperate!
Thanks for all of your help..i wish i could add more, but i'm breathless again today and have to lay down. I have sex hormones replace before thyroid and have felt no different. Cortisol is low 3x out of the day. Only using small dose of licorice. I cannot do any ndt it gives me a hashi's flare and i can't raise do to hyper symptoms at a very low dose. off to lay down now.
I had similar experience to you both with Pregnenolone and with Liquorice extract. They sent my Cortisol levels through the roof. Both boost unselectively levels of steroid hormones. I felt like Mr Angry on both.
Girlscout2 and faith63 I'm glad you two have found some common ground , but what strikes me listening to you both is that your t3 t4 ratio is wrong and that is exactly what Kenneth Blanchard says, and the good turning to bad is what he's observed and treated with his extremely low does of t3 to t4. If you haven't read it you may might it very interesting and helpful to do so. It's about £7 on amazon including p&p. good luck I'd be interested to hear how you both get on.
Thanks, I'll have a look. I'm not sure, I had very very serious Graves disease undiagnosed for over a decade, I seem to be one of those people that likes quite a good dose of T3 also, the theory being that my receptors have downregulated a bit after such a long period of toxicity, in fact I only seem to feel anything approaching well with everything near the top of the range.... I am thinking my ratio is now off but still researching as levo (with or without T3) made me feel so horrifically unwell, I'm a bit loathe to go near the stuff again even if I were to add it to NDT (which is what the Tired Thyroid writer does) ... thanks again xx
Well I am now medically rendered permanently hypO as my thyroid was surgically removed but my excellent old German endo felt that my disease process started when I was 17 (from taking a very detailed history, and by the shrivelled and inflamed state of my thyroid) so I've been thyrotoxic most of my life, my body and brain are used to being fairly well dosed! My current endo said that people like me, with poor peripheral metabolism and conversion do better on NDT ...
On 125 levo only my T4 was about 17 and my T3 2.1 so I don't think I convert levo very well
Ideally starting with a 98.5 T4 to 1.5 T3 ratio. So i've started with 125mcg T4 and am trying to get as little as 2.50 T3 out of my 20mcg tab. Means doing some fine razor blade cutting as he got slow release compounds made up for his patients. He also adjusts the dose up and down at the turn of the season autumn and spring, but he uses how people feel very much as a guide, but that's his starting point. He has found that over 20 years or so using tiny amounts of T3 in relation to T4 has stopped that, 'oh it all feels better' and then 'oh its slipped again so do I need to up the dose?' experience.
I'm not sure of his science, more than anything it is experience driven and as with all these things its rather suck it and see!
I used to be on 112 t4 and 10 t3..i do not convert well and my rt3 went over range when i dropped my t4 to 100, in order to add more t3. I don't convert well, so i need more t3 less t4.
Well, my ft4 levels have been high in range and ft3 levels are low. Also, a reverse t3 test shows high in range or over range, meaning your t4 is converted into an inactive form, rather than to t3..which is the active hormone. T4 has to be converted to be useful. Although there is supposedly some benefit to t4 in and of itself, but i don't think has been entirely proven.
This was written two years ago. I cannot tolerate synthetic medication in any form, I'm suicidal within days, all my body hair falls out, I have constant booming in my ears, I can't sleep, I can't breathe, I continually sweat and I have one bowel movement a week. All my jewellery has to be cut off my fingers due to the swelling, I am covered in mucin, I gain stones in weight, etc etc etc etc
I've been on NDT for three years, my T4 to T3 ratio is tickety boo and I'm much better.
Incidentally my blood results on synthetics and natural are the same, but I am a different person. Also in the last two years since this was written, I have moved on a great deal in my understanding, and am now focusing on different issues. My problem is not my thyroid, that is stabilised as best as it's ever going to be.
No Rebecca this page: tiredthyroid.com/rt3-2.html makes that claim but many proteins produced in the liver including SHBG and Methionine are stimulated more four times as strongly by T4 (not T3) - the gonadal chapter of Williams discuses this. It's one of the few bits of conventional Endocrinology where a distinct role for T4 is acknowledged.
Why not just try it and see? Listen to your body and your symptoms.
I had over the range reverse T3, came off levo for a week first, then spent a couple of months on T3 only, in the hope of lowering the reverse T3, and it worked very well for me. I was self-medicating so I adjusted my dose according to my symptoms.
A couple of months after I stopped the experiment I did a (private) thyroid panel again and my reverse T3 was back in mid-range. Overall my test results were the best I'd had in the last five years or so. I have no regrets about doing what I did.
With so much importance given to rT3 I cannot understand why the Endo's don't do it, have asked and asked, sorry cannot afford to go private. Surely this should be with the overall package of thyroid treatments. There is always a missing link and we do not get the whole real picture of what is going on. Surely we have that right?
I felt hugely better after my two months on T3 only, and the feeling of being much better than I was has been maintained ever since. If I was going to give myself marks out of 10 for how well I felt, I would have said 3 out of 10 before the T3, and 7 out of 10 after it.
There were other things going on at the same time which will have had an impact on how I am feeling. For instance I was very low in iron, and I have been treating myself for that for over a year now. I didn't really make much headway in improving my iron levels until after the T3 experiment. Whether that was related or just a coincidence, I simply can't say. My iron levels are still not ideal, but they are a lot better than they were.
I'm still on T3 only but I only take very small doses of it now. When my reverse T3 was high I was able to tolerate large doses of T3. But since I cleared the reverse T3 I only need small amounts of T3 which I'm relieved about.
Since I am self-medicating I was worried about the amounts of T3 I seemed to need when I had high rT3, as it would have been very expensive to keep it going long term.
I haven't taken any T4 since November last year, and in fact I'm rather scared to try it again, because I felt so ill on it. My next experiment, when I can get my act together (I'm a world-class procrastinator), is to try NDT. I did try it very briefly last year, but not for long enough to give it a real test.
I'd still give myself 6 or 7 out of 10 for how I feel most of the time, but I want more out of life than that!
I haven't had antibodies or reverse T3 tested for a couple of years. At the time of that testing my antibodies were negative (and always have been). Reverse T3 was in range.
I last had TSH, Free T4 and Free T3 tested in May this year.
No - cant afford to pay for that, just seemed probably because of my health problems and my initial reaction when my gp cut my t4 dose and all my t3. I've spent so much money on trying to recover from m.e I feel it makes more sense to try things that it could be and observe the effect. I have a few months worth of t3 left over from when my GP took it away. I'm not sure about being on t3 on its own for so long. I'm not sure about any of it. Perhaps if I got my dose optimal between t4 and t3 it would sort itself out. Kenneth Blanchard's approach might interest you. I've just read Functional Approach to Hypothyroidism. His results are interesting.
Thanks for the suggestion. I've never heard of Kenneth Blanchard.
Whatever you choose to do, just be aware of your symptoms, blood pressure, heart rate and temperature, keep lots of notes, and be careful.
I may have done well on temporary high-dose T3, but I couldn't say, with hand on heart, that I would recommend what I did to anyone else. There are too many variables and too many things that could go wrong.
Lots of ppl here seem to take t3 only, it's not something I want to sustain even if I do try it. Having m.e makes it very hard to know what is what symptom wise they can vary from hr to hr, it's a pain. Like yesterday I felt best I have since GP slashed my meds because I reintroduced 25mcgs t4 and 5 mugs of t3 last Monday and as week progressed felt symptoms reduce until yesterday nite I felt my usual level of illness that I'd had before GP cut meds two months ago. Then in night tingling really bad, woke up sugar crashing and have been feeling nauseous all day. So I'm thinking is that just the usual m.e roller coaster or shd I reduce or decrease one of my doses. Really hard to know if coming or going. Thanks for sharing your experiences though, all helps.
Hi. I am temporarily on a small t3 only dose (15 mcg in 2-3 daily doses). 8 months ago I was put on t4, felt very good at the beginning, less so as time passed, then the doc raised the t4 and everything repeated as before. I thought I did not convert well. I made privately the rt3 test which showed a poor ft3/rt3 ratio of 8.55. Maybe because of the illness I had had before (asthma, gerd) or high ft4 shown in the blood test.
So I decided to go on a 2 month probe of t3 only in small doses to get rid of rt3 and see the reaction. The first month was very good, but now less so (I need another week to finish the experiment, make the blood test and start switching to combo t4/t3) At the moment I have a feeling I need to raise the dose which I am reluctant to do as I plan to switch soon to the combo ratio t4-t3 of 4:1. If I go high on t3 only, I do not know how to switch smoothly to the combo including t4. I could tell you more in a few weeks' time. What I surely know is that I do not want to stay indefinately on t3 only. If the t4 is not necessary, the body would never have used it in the first place, would probably produce t3 directly.
2-3 months of t3 only to clear the rt3, cut down the colesterol, recover the liver, get rid of the depression and then go back to combo t4/t3 or armour was my plan.
That's interesting and helpful. Read Kenneth Blanchard too in your investigations u may recognise some problems uv had and how to resolve them . If u google him you'll find his books. Thanks
What makes you think you need to still be clearing Rt3, couldnt it be that your body is now saying its time to do combo again? Where did you get the original idea of how long to do it for?
I got the idea from Stop the thy.madness. They say 8-12 weeks to cut down the rt3. I go tomorrow to see the blood result of ft3. ft4 and tsh will probably be very low. To tell you the truth.. all this time I had the feeling I was doing something unnatural. I felt very good the First month, but now I have the feeling I should raise the dose as some tiredness and fog have come back. So. I can't wait to start the combo t4/t3 tomorrow, slowly cutting down ft3 and raising ft4. I will inform you about my blood results and how I am doing on the combination.
Hi. Being on 50 mcg t4 only (with returning symptoms of fogginess, tiredness etc.), poor ratio of ft3/rt3 of 8.55 I switched to a 2 month probe of t3 only in a small dose (15 mcg in 2-3 daily doses). After the first month I felt optimal, during the second month less so.
So here are the blood results:
T4 only 50 mcg with mild hypo symptoms:
TSH : 0.64 (0.27 – 4.2)
FT4 : 19 (12-22) raised from previous 14.5
FT3: 3.8 (3.1 – 6.8) fallen from previous 4.3
After a 2 month probe on T3 only (15 mcg in 2/3 doses):
TSH: 1.68 (0.27 – 4.2)
Ft4 : 12 (12-22)
Ft3: 4.9 (3.1 – 6.8)
Fe 19 (11-32). TIBC 58 (49-72), Ferritin 150 (35-400), b12 866 (195-663) after supplementing
My aim was to raise the ft3 and get rid of the rt3. So now, what I need, I guess, is both t4 and t3 in a combo. Surprisingly that small dose of T3 and no t4 did not surpress the TSH at all. On the contrary, it proved that I really need it. I am already gradually putting back small doses of t4 and cutting down t3, waiting for THE day when I'll both feel and test positive and see the result. What my guess is now, my combo ratio I need might be a school perfect 4:1.
Thanks, really interesting. Don't assume that because when you were on t3 only and needed it, that if you are on combo you need anywhere near as much. Are you paying for private tests and self medicating?
I find it really interesting that so many people on the forum have the experience of starting on some replacement, t4, or t3 or t4/t3 combo and sometimes even NDT and feel good to start with and then it starts slipping again and the automatic response is that logically one needs more. That's how I ended up on 175mcg t4 and 20mcgs t3 after 17 years on thyroid replacement. However, now I am beginning to wonder how much a role being over medicated plays in my three years of M.E/CFS. Because of course I was looking out for hyper symptoms. I wasn't expecting the range of symptoms I have had for the past three years, or if I was on too little I was looking for my classic hypo symptoms - dry skin, hair falling out, weight gain.
Yet what so many of us seem to describe is not being able to get it right, or feeling okay and then it changing again and again - and that's why I'm trialing Dr Kenneth Blanchard's approach because he experienced that same up and down with his patients until he started using miniscule t3 quantities with t4 and began to find he had much happier patients.
I am just in two minds as to whether to do what you've done and clear any over load of rt3 first, or get the dose balanced and let the body naturally clear the rt3 with the significantly reduced t3. So I was on 20mcg t3 and have started using as close to 2.5mcgs as i can get breaking up my pills.
Isnt it too much t3 that contributes toward the body converting t4 to rt3? The danger in putting back t4 gradually is that you still have so much ratio of t3 that the t4 will still be used to make rt3 undoing all your good work. Perhaps having significantly reduced rt3 you should actually go back to a proper t4 dose and take t3 way back to 2.5mcgs or whatever you can manage, then ramp from there until you find a good place, rather than bringing them toward each other simultaneously, if you see what I mean?
Anyway be really interested to hear what you proceed with and how it goes.
Your Ferritin wants to be nearer 200, bear in mind as Thyroid hormones normalise it exposes Vitamin deficiencies. Your Thyroid results on T3 suggest you need slightly more of it without the T4.
I Know what you are meaning - cutting down T3 from 15 mcg to 3 mcg and raising T4 from 0 to 60 mcg.
That is my ultimate goal, but logically I am reluctant to do it now in a one single move. It would be quite a shock for the body. I am afraid of the reaction. I want it to be a slow taming process. So I plan to do it in a 3-4 weeks' time, slowly cutting down T3 and at the same time introducing T4. I will carefully listen to my body waiting for THE day when I will be optimal. I plan then to do a blood test to see which ratio that would be.
As far as the rt3 is concerned, I thought I had it because of my extreme stress and illness which I developed in the last year(asthma and Gerd). Now both of them are under perfect control and I feel very good. I think there must be a reason for the body do convert sometimes to rt3 to slow down the metabolism. I am also very food sensitivie. I cut out gluten completely, later I found that even corn does not suit me (probably all sort of GMO food either). In the past I had many infections, was put on antibiotics many times so probably the gut and imuno system are compromised, so I try to put to harmony all the things together. The body was under stress for many years and it takes much time and patience to get back to normal. That is why I avoid any more stress and move up and down with numbers very cautiously and slowly.
Yes I had enormous amounts of intro venus anti biotics when I was very ill for weeks and several major opps. I think the last operation triggered my M.E. Do let me know how you progress.
I know this thread is from 9 years ago, but I am keen to understand how you are doing today. I have been through the thread, and from my point of view there appears to be a lot of bogus responses and advice that is not sound.
I have been exactly where you are.
1. High reverseT3 can, and does 100% block T3 from working correctly within the cell. This has been proven, and there is usually a DIO1 & DIO2 gene defect. This is something you can get tested.
2. High reverseT3, Even If you reduce T4 to minimum, and Increase T3 ratio, can still cause Issues (not for everyone, but for some) with full blown hypothyroid sypmtoms (check out a very good blog, also plenty youtube videos from Dr Westin Childs)
3. ReverseT3 can absolutely be reduced by dropping all T4 Medications, and using T3 Monotherapy, however this is considered an absolute last resport when all other methods have failed. There are literally thousands and thousands of patients around the world thriving on T3 only monotherapy (there is a great book, recovering from hypothyroidism with T3M Written by Paul Robinson - I am using this protocol today).
4. For some people, T3 Mono-therapy is the only option, so whether or not there is advice on here of people telling you it is dangerous and not to do it, you need to take command and control of your own symptoms and body with the support of a doctor that is open to help to trial different medications and different mono therapies to see what works best.
5. Very high levels of reverseT3 can take 12+ weeks to reduce to a healthy level. So you need to be extremely patient. Many people will try to go down the route of T3 Mono therapy after stopping T4 medications (If you have a thyroid or not) only to find themselves not feeling any better, and in some cases feeling worse. A contributing reason for this is due tot he fact that reverseT3 is still stopping T3 from doing its job properly at a cellular level until the RT3 is flushed out. During this period, If you take too much T3, It can still pool Into reverseT3 for two reasons... Firstly, T4 will stay in your blood for around 5-6 weeks, so you need to start extremely slowly with T3 mono therapy and stay only on anywhere between 20mcg - 25mcg's per day for the first 5-6 weeks. You should expect to be hypo during this time and its something that if you are serious about trying to heal your body with this approach, it will take time. You are not able to truly know if T3 Mono therapy will 100% work for you until after 12 weeks, or whenever the RT3 has cleared. The second reason you can still pull into reverseT3 If taking too much T3 during this period, Is because this has what you body has been doing at a cellular level for years and its a natural process, so with the T3 not being able to do its job correctly for the first 12 weeks, and with still having T4 in your blood, as well as you receptors being in a state of protection, expect continued fatigue, brain fog and hypo symptoms for a minimum of 3 months (the odd lucky person adapts fast and off they go, but usually not the case).
All In all, It Is a massive game of patients... And when people have been sick for soo long, similar to a few comments on here such as "I tried T3 on Its own and it made me sicker and stopped after a few days"... The transition Is not being done correctly.
You need to have expectations that you will not get better within a few weeks if your reverseT3 Is extremely high (years of T4 abuse and RT3 Pooling takes time to resolve)
It takes the endocrine system a full two months on any medication to get into the cells... And then you will have a period of adjusting to the correct dose, that can take another 3 months, so whatever combination, or monotherapy you are going to try - you need to stay consistent, be committed, be patient and set your body up for success. This is much harder than you may think, especially when bed ridden, I have been there.
Please also note, I am not for, or against any method of medications or supplements. NDT Improved my symptoms, however my reverseT3 was 100% of my T4 and my RT3 numbers crept up to *655 (through the roof, could not function). You need to be kind to your body, do whats right for you and ensure you have the right medical team that will support you. If they do not support things you want to try, find alternatives doctors or endo's that will. Also, Its not the best practice to have more than x1 endo at any given time, this can cause more confusion. We can all get better, however being patient and taking things a day at a time and expecting for improvement not to be drastic is a key expectation to set yourself... I am currently 3 weeks into T3 monotherapy having tried everything else, and all other combinations for a minimum of 6months at a time. Do I feel better? Not really. Perhaps for an hour here or there. No light switch has come on as yet but I am committed to staying the course for a further 5 months while taking detailed notes and keeping my eye on symptoms over this duration to find out what will be my long term pursuit of therapy.
Most importantly, I am trialing T3 monotherapy starting a low dose, In a very safe manner because everything else has failed me. This is my last resort. I do not accept living a life of mysery, and will keep fighting until my body responds to the correct theraputic hormone dose, regarless if that is T3 Monotherapy, NDT, T4/T3 Combo. I will NEVER Be able to go on T4 monotherapy.... Ever.
Good luck, be careful, and take your time. Wishing everyone well.
thank you for your long and detailed reply. Yes it is a along time ago. I have made progress since then, but my life is still very restricted by ME. I eventually joined Paul Robinson’s Facebook group (sadly no longer available) and went over to T3 only treatment, taking my first dose in the early hours of the morning to support cortisol production. I still use this methodology today and am currently on between 50 to 60 mcg per day, and even managed to get my endocrinologist to prescribe it for me.
It hasn’t been a wonder cure, and I have had several episodes of Tachycardic A Fib, which they are convinced are a result of the T3, but which on reflection over the years i do not think is the case, there is no evidence of cause and effect. I think my heart goes into A Fib when the body has been placed on more stress for one reason or another and this has happened when my dose is as it is or I have dropped it significantly in fear.
I have done many, many other things to support a recovery from ME (you name and I would be amazed if I hadn’t done it) and I can definitely say my suffering is so much lower, many symptoms dropped bit by bit with each thing I applied or addressed, but I still can’t break free of it and trigger kick back if I push it. And this despite applying 4 different methodologies to address TMS, or retrain my neural pathways, from within 6 months of first getting Ill to more recent years.
What has transformed is my cortisol stress test results, were pretty flatlined 9 years ago and I did self prescribe some hydrocortisone for a year or two to support my adrenals. I have just had my cortisol levels tested a couple of weeks ago and they were the closest to normal I have ever seen, which is very reassuring.
I try to live with gratitude for the suffering I no longer experience, and acceptance for what remains of it and how I can’t see I will ever lead a normal life again. I think after 13 years of fighting to recover I have to accept that is the case now, whilst always having a hint of hope.
Anyway, hopefully others will still discover and gain from this thread and your latest contribution. And maybe long covid will be the game changer the ME community needs to have the scientific world finally at least attempting to understand what is going on rather than dismissing this all as learned behaviour, neurosis or ‘repressed childhood trauma’ .
Take care and keep as well as your situation allows you.
You have a great attitude, and deserve to have continued improvement. I also brought LDN on board through my endo about 2 months ago and I am working slowly through therapeutic dosing. This Defo seems play a positive role in managing stress and I am not even close to being at the top end of the low dose, so this may also be an important part in my journey.
Can I ask, when you reverted to T3 only, and having low cortisol issues, did you find it difficult to increase dosages and move up the gears initially? I am only 3 weeks in and I am taking it very slowly but thankfully my adrenals are all contact, despite suffering from a bit of low cortisol on the morning, more then likely brought on by a few years of T4 monotherapy that has comtributwdnto clearing out. Changes diet with some blood sugar issues and spikes as well so taking things slow. I still find 3 weeks in I am still very tired in the mornings, especially when I take my first dose. Wondered if you experienced this and if it improved after 12-14 weeks of therapy while both T4 and RT3 reduced?
Really grateful for your response, I think it’s helpful to have our own element of therapy on this thread, it can help with healing. I deeply want to get better, I have a new little girl and an extremely supportive wife but I’ve been sick for about 5 years now and I am hoping this T3 method will bring improvements combined with the sacrifices and lifestyle changes I have already made.
Take care and keen to know more about your T3 journey in the intitial stages. Did it get worse before it got better?
Hi again, it’s so long ago and I have done so many things since that to be honest I can barely remember much about it. I also have ongoing and worsening memory problems, I thought that would get better as I made progress and whilst the brain fog is definitely gone the majority of the time, my short term memory problems get worse. I used to have a razor sharp memory too. So sorry I can’t help you with details.
All I know is that whenever I try to introduce any T4 whether Levo or amour I get worse. I also used LDN but in the end wasn’t sure whether it was placebo or not.
i would say the 3 biggest changes in addition to t3 for me came with working with an ME nutritionist from the Optimum Health Clinic (but I could only afford that once I had fought for PIP) using a rife machine to kill pathogens (makes me sound like a nutter but it was the most effective thing and definitely helped me) and my partner remediating our old stone cottage for mould, which meant I lived with my best friend for 5 months, whilst she went through the house from top to toe erradicating every sign of mould including get rid of most of our belongs which could not be washed etc.
Buti don’t know what your symptoms are, if they are ‘chronic fatigue’ classic hypothyroidism or complex ME. I started with about 20 daily symptoms which made my life a living hell, and now I cycle through about 4 key ones on top of classic fatigue/exhaustion which now fluctuates much more from one part of the day to another.
My daughter was 5 when i first hit the wall, i had had to fight very hard to become a mother for one reason and another, least of all homophobia, and it is the biggest grief of my life that she is almost 18 and I am only now able to enjoy a bit more of her life with her, but of course she is a teenager, nearly an adult. No one can give you those years back. I have been so fortunate though to have an amazing partner who stepped into the breach all round.
Good luck. I would say that addressing multiple issues via multiple approaches is the way forward. Everything I have implemented has helped me move forward some how, whether a tiny step or a large step and they all mean that the quality of my life is much more enjoyable.
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