For the past 2 mornings at my usual time of 6.30am, I have been crunching my dose of Levo rather than swallowing, I was trying taking it sublingually to improve absorbtion and avoid my digestive system! What I found was, it sent me into the deepest sleep imaginable for a couple of hours. Better sleep than all night.
I wondered if anyone could enlighten me on the mechanism of Levo, and whether this is a good or bad thing ? I have not noticed any other effects. I always take my T3 sublingually.
Many thanks
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Daffers123
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why would you take the T3 sublingually? the advice I was given was to crunch the T3 - I break it up into small pieces before I crunch to make it easier for myself after crunching unbroken tablet one morning and finding something hard in it - it turned out to be a bit of my front tooth which got broken off trying to crunch the solid tablet. I'd be crunching both the T4 and the T3 if it were me.
Indeed! and with all the covid business I haven't been able to get to the dentist to get that and other matters addressed. What do you mean by 'nibble' on a Cynomel as per Ray Peat's advice?
Ray Peat - sorry - didnt make any sense, did it! Search Ray Peat .com/thyroid and scroll downto Section V Therapies, he has some interesting opinions on thyroid dosing, including topping up during the day with extra small amounts of T3as and when you need it. It works well for me as I can't tolerate much T3.
I got to the dentist (not for anything nearly as serious) and they were all dressed up like astronauts, full body suits etc. and once they finished with me, had to strip down before leaving the surgery. Honestly, the mind boggles. Hope yours is sorted soon
Your dentist experience sounds horrific and just like I had imagined it to be from what I have seen on the news - if they are wearing so much PPE it makes you wonder what is on your own clothes and skin in terms of covid particle after an experience like that. I am holding off going to the dentist for as long as possible to see if things settle down a bit - teeth are manageable in the interim. I did check out the Ray Peat stuff - the "additional T3" is interesting - I have often wondered about that myself about the benefits of a "top up". But I note that he is suggesting that in the context of combined T3 and T4 dosing while I am on T3 only so I'm not sure how it would work in a T3 only context.
BTW re prepping of the T3 dose what I do is I prep mine at bedtime - cut the tablets up into quarters (fiddly, but worth it) and then store them in a little sealed vial which I can then toss into my mouth to take my dose. Somehow this seems to slightly "soften" what is quite a hard tablet and makes it easier to crush in the teeth!
Thats a good tip, I have tried to wrap tiny pieces in foil, unsuccessfully and wastes a lot.
Can I ask how you're getting on with T3 only as my doc wants me to do this while we test Rt3. I have struggled to raise my dose of either hormone, synthetic or NDT, beyond a small dose (ie 50mcg Levo). Just cant increase it. However he has prescribed only 1.25mcg T3, twice a day. Thsts all. No T4. I fear this will leave me feeling seriously hypo.
How much T3 a day do you take? Were you on T4 before? Did you start on low dose?
You're wise to avoid dentist if you can for as long as poss.
Ray Peat does talk quite a lot of sense, I like his approach.
While I can tell you what I am doing and how much I am taking and how I am finding it, I am not sure how much help it will be to you as every person's situation is individual to them, to their symptoms and to their test results etc which I am sure you will appreciate. What might be right for you treatment wise might not be right for me and vice versa. I am self treating for ISTH - a form of thyroid hormone resistance - and the protocol for that, devised by the later Dr John Lowe, is that you take a dose of T3 once per day - so, all in one go. I started out very very low indeed and have been gradually working my way up to my present level of dosing increasing by a quarter of a tablet every 2 weeks. I am currently on 43.75mcg. About 7 weeks ago I began to use progesterone cream to counteract menopause symptoms so as this will boost thyroid function this has meant I have had to adjust down my T3 dose to the present level and I will have to continue to monitor that going forward. I think I have been deficient in both progesterone and thyroid hormone since my early 20's but neither of these were ever picked up by my GP. I sort of muddled through my 20's with great difficulty healthwise but crashed in my very early 30's and was diagnosed with ME/CFS (I already had FMS). I saw an endo last August who said he could not treat me until my TSH was over 10. I calculated that by that stage I would be dead, so I decided to self treat. If I hadn't self treated I probably wouldn't still be here - sounds like an overstatement but its factual. I wasn't functioning - but the thing was I "looked" ok. I'm improving, very slowly, but have some way to go - as some other wise soul on this forum said, it took a long time for my body to get into quite the mess it is in so it is going to take a long time to get out of it. I have very low ferritin, and always have done, which makes it hard for my body to make full use of the T3. I haven't tested yet, but am 99% certain I have a MTFHR issue which further complicates things, and possibly a COMT issue as well. I continue to research research research which is time consuming but it is all you can do if you have to help yourself.
Hi and thanks for explaining your experiences. I do appreciate its different for all of us but its so helpful to learn and broaden knowledge and find other areas to search for answers. Its outrageous the enfo refused to treat you
Dr Lowe was truly ahead of his time - I have read some of his T3 protocol stuff. Particularly of interest as my (private, hugely expensive)thyroid specialist wants me on T3 only as he suspects either RT3 or some other form of hormone resistance. He has prescribed a very low dose (1.25mcg twice daily). I am utterly terrified that this tiny dose will leave me feeling extremely hypo . I hadn't realised Dr L had a protocol I can read up on. I have struggled with this fir 15 years now, (hashimoto's), never able to stabilise dose. Low ferritin here too and on bio identical HRT which I don't absorb well.
Have MTHFR defect and also COMTs which mean I'm not properly clearing hormones from system.
Sorry for going on, but my point is that you've told me about ISTH which I can now research and also that you've been surviving on low doses of T3 , increasing slowly.
So that's really helped and encouraged me, thank you so much
Wow - did you do the tests for MTFHR and COMT ?- if so I'd be interested to know did you do them privately and if you used an online test kit as I'd like to do the same, as I suspect that I am not clearing hormones from my system properly either and very likely have estrogen dominance - which can in turn have knock on effects on thyroid function. And also the low ferritin too - are you taking the bioidentical HRT orally? I'm not an expert but it is possible you might be having problems because if you are taking it orally it has to pass through the digestive system and be processed via the liver - with the MTFHR and COMT snps you might have a problem with that. By using it in the cream form it gets straight into your blood stream which is why I'm using the progesterone cream and finding it helpful. Low dose melatonin is also helpful.
You should read Hugh Hamilton's book Impaired Sensitivity to Thyroid Hormone [avail on Amazon uk]. I found it helpful. Just to be clear I started off at the lowest possible dose of T3 - 6.25mcg - and had to survive on that for 2 weeks until I could go up to 12.5mcg etc. I was very very hypo indeed until I got to about 25-30ish-mcg. It is only now that I am at my current dose that I am starting to feel any way functional. You could try to raise all this with your (pricey, private) endo (you have my sympathy) and see how you get on but I wouldn't have massive expectations that he is going to understand what seems to be fairly little understood in terms of thyroid dysfunction - and it is possible to be both hashi and ISTH; just because you have one does not preclude you from having the other, in which case if you are hashi and have ISTH then the correct treatment approach for you might be a single dose of T3 once a day gradually working up your way through the doses until you reach your own treatment window. I don't yet know if I am also hashi. Endo was supposed to arrange an ultrasound test to confirm or rule out but it never happened and with all the covid hoo ha it has likely fallen off the radar.
Yes I had the DNA Blue when it was first launched by Blue Horizon a couple of years back. Saliva kit so easy to do. I didn't go in for 23AndMe level as the above really answered a lot of my questions. Cant remember cost but if you would like to see the type of results I can try and post them on my profile. Let me know .
Starting low would be a must for me as I'm so sensitive and never got T3 up dose wise, although my levels have been satisfactory on the low dose I got from NDT BUT my hair fell out and I suspect might be the animal hormone. Tried low dose for a year.
I do also believe that timing of taking T3 could important for me.
I'm amazed you could cope on such a tiny dose for 2 weeks, did you suffer anxiety ? I always do if my hormones get too low.
I am on cream HRT which I am not absorbing well, so waste of money. We tried sub lingual pastilles but I absorbed that too well, and starting having periods after years of none. Didnt much like that so, back to creams. Agsin hugely expensive.
When I saw Dr P years 8 ago now, he recommended Wellsprings 20:1 which I am thinking might be worth a try . Do you use progesterone only, if so, every day or with a week off ?
I managed to track down Dr Lowes info and will def order the book you mention.
No point in trying this with endo or specialist , you're right. Better help on here
Apologies for not getting back to you sooner but have been having tech difficulties.
I didn't know BH did a DNA test - I always had reservations about the 23AndMe testing as A) media reports suggest they share your data around (at a profit) and B) I don't want a hugely broad spectrum test warning me about things I'd only worry about. But I would like to know about MTFHR, COMT and PEMT. Sounds like the BH kit might be what I need. Am going to suggest that rather than add results to your profile maybe you could PM them to me and then I could just delete them after reading.
The first 2 weeks on the very low dose T3 were horrendous but just something I knew I had to get through - I don't remember suffering anxiety as such but do remember having the most awful migraine headaches - the kind where you would happily take a sledgehammer to your skull if it would bring relief.
Why do you think you are not absorbing the cream HRT well? Did you try rotating the application sites? did you try taking magnesium alongside? phytoesteogens? Maybe it was the brand of cream - sometimes changing brands and maybe going for a higher quality brand can make a massive difference - I cannot recommend my brand highly enough. It is expensive but lasts a long time and is making a huge difference so worth it in the end.
Lucky you getting to see Dr P! about 4 years ago I had an appointment with him all set up, flights booked etc but on the day was too unwell to travel so had to cancel. Funnily enough, I looked at the ingredient list for Wellsprings 20:1 just the other day but there was a lot of stuff in it I didn't like the sound of - I use Elan Organics which comes from USA - would be worth you looking into it. Very pure product. I use progesterone only, with some phytoestrogens, magnesium, melatonin and Igennus B complex. As I am ED I wouldn't want to add estrogen. To date I haven't taken a break yet and have been using it twice a day with the advice not to take a break until I get to day 60 to allow the body to get as close as possible to a "saturation level" after being deficient for such a long time. I am due to break for 4-5 days at day 60 and then take a break thereafter on day 30 of each cycle for 4-5 days. TBH am dreading the break as I don't know how I will cope if all the horrible symptoms come back on the break. I can PM you a link to a very good book on the subject - a 300 odd page long PDF - if you want.
There is a wealth of info re Dr Lowe on the net - he also has his huge book "the Metabolic Treatment of Fibromyalgia" where he sets out his T3 only treatment for FMS as a form of THR and he has other shorter books which you might come across on google although I haven't read them yet - I have some links I will try to dig out and post for you. I'm not suggesting you don't try this with endo or specialist, but just that if you do so don't have any expectation that they will understand what you are talking about. I could be wrong of course, and it would be interesting to see what response you might get if you raise it. I am self treating because I know GP wouldn't have a clue and doubt endo would either - but am in the position that I dread them doing a blood test and me having to admit to them what I am doing because they just wouldn't get it and I don't relish the likely backlash!
I will attempt to send the test results by PM later today. Am assuming just like attaching file to an email?
I would be keen to read the PDF as I struggle with HRT. I go to Marion Marion Gluck Clinic in London, hugely expensive. We realised I wasn't absorbing creams particularly well from blood results. However I was also ED and am very keen to get off the Gluck roundabout . Dr P always said progesterone supplements was best way and would sort the imbalance. For all I know the HRT is contributing to my non tolerance thyroid hormone.
I like the sound of yours and will look into it, thank you.
I have managed to overdose the T3 already and feel ghastly! Even on a tiny dose of 5mcg split. Can only assume it's the T4 still in system. We are in middle of a protracted house move and sale so its probably not wisest time to try. Feeling under enormous stress. Trouble is how to limp on for another 4 weeks.
I don't expect a quick reply BTW. sometimes I can't face putting computer on st all.
Oh you poor thing - house move would be horrendous and not helping matters at all. If you are taking estrogen as your HRT and you have ED then the estrogen and ED will be impacting your thyroid function making things worse. That being the case you might be better to go prog only. I'll pm you the link to the book which you may find helpful. I'm sorry the T3 was too much for you even at that lower dose - I know what it feels like as I had to tinker with dosage after introducing the progesterone and for a while my T3 dose was too high - only fractionally - but I was hypo miserable.
I am wondering whether your best bet might be to let the T3 clear your system by stopping it and if you plan to reintroduce it then would it help you to marginally lower your T4 dose to accommodate the T3 dose? But if so I would advise you to put a specific new post out to the forum about that describing what has happened as there are plenty of people here who could better advise you about how to do that than I could.
All thyroid hormones are designed to be swallowed so that the stomach acid can detach them from the sodium molecules they're attached to to make the pill, and allow them to be absorbed in the gut. Thyroid hormone molecules are too large to be absorbed through the mucus membrane in the mouth, so it hangs around in the mouth until swallowed. Which is ok, as long as you don't start drinking coffee or something straight after, which will prevent thyroid hormone from being absorbed.
I have no idea why you slept well after crunching your levo. Coincidence? Even when you swallow it, it stays in the stomach for a good half hour before passing into to be absorbed through the gut wall. It then has to be converted into T3 before it becomes active.
i am allergic/hypersensitive to liothyronine sodium (and now possibly to my body’s endogenous t3 as well) and am wondering if the lack of absorption in the mouth is part of the reason the multiple desensitization protocols i’ve done at this point (using oral vs intravenous dosing) have only ever been partially and temporarily successful at best. i’ll be writing a post about this soon and will tag you if you wouldn’t mind, grey goose - i’d appreciate your input
hello! I would love to hear more about this as well since I too am hypersensitive to liothyronine and even levothyroxine. I’m more curious to hear your thoughts about hypersensitivity to your body’s endogenous T3 as I feel like my body is the same with T3 and T4. No doctor can figure it out. Thank you!
Hormones are such a fine balance. My dose of both thyroid hormomes will not stabilise, I am continually adjusting by tiny amounts. I notice the smallest adjustment very quickly. Tricky to know, which hormone needs to be iincreased/reduced as a lot of symptoms are the same.
I struggle with the same thing. I notice the tiniest dose change very, very quickly by having adverse symptoms. Doctors tell me it's impossible to have a reaction to a dose that quickly. To me it's like taking a headache medicine like Tylenol or Advil - I feel it immediately. Makes taking any medication very tough.
Hi, yes I totally get that. Ive been told same by doctors but I'm forever juggling my dose. I cant raise it enough to suppress my own thyroid as the side effects of raising are horrible.
How do you cope - just juggling and spending a lot of time not feeling great? What are you taking ?
Couldn’t have said it better myself - I can’t raise to a therapeutic dose to combat the hypo symptoms because of the horrendous side effects. If I stopped the thyroid medicine, the side effects stop, so it’s directly related. I successfully took thyroid medication and was optimally treated for 8 years and then bam, they made me sick.
I cope, but barely. I do spend a lot of time feeling poorly. I live in the USA and I have been around the country to many specialists at the best hospitals. Even the Cleveland Clinic and Mayo Clinic told me it’s impossible to feel what I’m feeling. I’ve had every test imaginable. For awhile it was thought to be adrenals or hypopituitarism, but that now seems ruled out. I’ve recently stumbled on Mast Cell Activation Syndrome. I’ve started the medication protocol for that and so far it seems to be helping me tolerate the thyroid medication better. Fingers crossed!
I've tried all of the thyroid meds known to man - all the T4 medications, combo T4/T3, NDT, compounded meds, T3 only, you name it. I couldn't tolerate any of them. Before this I was great for 8 years on brand name Synthroid 75mcg. Right now I started back on liquid Tirosint 50mcg (to start). Thankfully my insurance pays for the bulk of it and they are virtually without fillers. There isn't anyone specifically that I follow for mast cell disease. I just did a lot of research and found out what the starting treatment is for it and compared the lists of H1 and H2 blockers to what I already had in the house and started there. The treatment can include chemotherapy for very severe cases, but I'm hoping I can get by with the over the counter medicine. So far it appears to be helping a lot. I'm no where near normal, but I seem to be able to take the Tirosint a lot easier now without becoming very sick. I am taking an H1 and H2 blocker along with an 81mg aspirin around 9pm and then I take my Tirosint last thing before bed. I'm still only taking the Tirosint every other night though so I don't overdo it. While traveling the country seeing doctors, I even included 2 allergists and 1 immunologist in my search, but mast cell disease never came up. I'm really hopeful I finally stumbled upon the answer. I'm just now sure if I should go back for formal mast cell testing or not. I hope this helps you too!
Thanks yes, again I could have written that myself, apart from seeing immumologists which I have thought of. Ive read about mast cell and histamine a bit too. I think I even worked out if I was H1 or H2 dominant, maybe by reading Datiis Kharazians book (one of so many books ..)
Tirosint is the only thing left to try assuming I cant tolerate T3 only and I'm expecting to have to pay. I'm glad you are at least getting that. Sounds like a low dose is working for you.
Its weird that we were both ok on T4 for years and then became unable to tolerate it. My belief is that a doctor told me to increase my dose too high , at that time I knew nothing and doctors were Gods, so I increased. When I look back to how I changed without realising at the time, this was the start of being overmedicatef and Hashis becoming overt.
I don’t have antibodies for Hashis, so I can’t say that’s my issue. I do have a multi-nodular goiter though and I know you can have Hashis without the antibodies, so it is possible I still have it I guess. For me, my issues started after a very stressful, traumatic, emotional experience. That’s really the only thing I can tie it to. The thyroid medication issue started exactly two months to the day the trauma happened. I’ve always associated the two. I have also read that mast cell activation can begin due to trauma/stress - like altering the DNA. I spend a lot of time worrying what I have wrong with me and my brain goes to very bad places. Even after discussing Mast Cell with my Endocrinologist, who admitted it was not his area of specialty, I got worried because he said you can just have idiopathic Mast Cell Activation Syndrome or a worse kind that can cause organ damage or go into leukemia. My family tells me that I’ve battled it for 2.5 years now so if it was something really serious I still wouldn’t be here. I guess there is something to that. All of my scans and labs always come back great, aside from thyroid because I’m never on high enough meds. My only other issue is iron deficiency which I read yesterday can often go hand and hand with mast cell issues. Feel free to private message me on here anytime. I have another pen pal on here just like us who I often speak with and we bounce ideas around.
Levo isn't made to be sublingual. We have to swallow this inactive thyroid hormone on an empty stomach and should be taken with one full glass of water and wait an hour before eating.
The purpose of levo (inactive thyroid hormone T4) is to convert into T3 (Active hormone needed in our millions of T3 receptor cells).
I am too - Tirasint for 10 months after 17 years of Levo tabs - have had Hashi for 23 ears but when it started I was hyper for the first 4 years. So far I am not very impressed by Tirosint except for being able to eat straight after taking it. My TSH is nicely suppressed bit my FT3 is still not as high as I would like.
I disagree with statements that crunching tablets has no advantage. Obviously, the action of stomach acid is still required for the breakdown of the powder and release of thyroid hormone which will be absorbed further along the digestive tract. But in cases where stomach acid is low, crunching will allow that process to work faster and more efficiently.
We chew food for a reason: enzmes present in the mouth, chiefly amylase, will begin to break down sugars and starches (if present), but chiefly the chewing process signals to the stomach to get ready to receive the food by stimulating whatever acid production is possible for that individual and the muscular contractions that will move the chyme along to the next stage.
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