T3 dosing: I'm dosing on my own but could use... - Thyroid UK

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T3 dosing

RobinAnn profile image
39 Replies

I'm dosing on my own but could use some input.

Most recent FT3 was 2.5 (2.0-4.4)

I was taking 60 mcg. I'm now at 80 mcg and I haven't noticed any changes. I somewhat think I'm maybe getting worse. I take it all at once when I wake. How fast should I raise and by what size dose?

I also have major food sensitivities and I'm getting really turned off by food - nothing appeals to me or satisfies my taste. Have others had this too or might this be a different issue?

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RobinAnn profile image
RobinAnn
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39 Replies
Mahala1959 profile image
Mahala1959

Are you taking T4? In any case you ought to have a blood tests if you are increasing your dose to see where you are. Thyroid malfunction and gluten sensitivity/coeliac disease are strongly linked, do you think gluten could be the culprit in your food sensitivity issue?

RobinAnn profile image
RobinAnn in reply toMahala1959

Hello Mahalaa 1959. I came fairly close to a thyroid coma when I took t4 - no conversion. So no T4, I can only tolerate T3.

I have been gluten free and dairy free for years. I eat low FODMAP (fructose and other natural sugars) too. I must eat low fat because of a bad pancreas. Not much food choices left after that plus I'm just so turned off of food right now. I also have issues with low stomach acid.

Doctors won't help me unless I take T4... hell will freeze over first. I am dosing by symptoms, temps and pulse. Which was a very successful technique for many years before the advent of questionable blood tests.

My ferritin levels are not great so I'm working on that too (in the evening)

Mahala1959 profile image
Mahala1959 in reply toRobinAnn

It sounds like you have everything more or less under control apart from the iron so good luck with that.

shaws profile image
shawsAdministrator in reply toRobinAnn

I would only raise by about 1/4 and thereafter about every 2 weeks taking note of temp and pulse. If either goes too high reduce back to previous dose. (I am not medically qualified and have hypothyroidism which was undiagnosed/unmedicated). I now take T3 only.

This is a link from Dr Lowe (scientist/researcher/doctor) who had thyroid hormone resistance himself - his dose was 150mccg daily (in middle of night). Second link is 'Safely getting well with Thyroid Hormones'.

web.archive.org/web/2010103...

web.archive.org/web/2010112...

web.archive.org/web/2010103...

web.archive.org/web/2010103...

The link below has more topics some of which are now inaccessible as it is archived due to Dr L's early demise.

web.archive.org/web/2010103...

RobinAnn profile image
RobinAnn in reply toshaws

Hey Shaws, I'll start checking the links and thanks. Want to clarify: to raise by 1/4, from my 100 mcg tablet or from my 20 mcg tablet?

Currently I'm raising 10 mcg every two weeks. And I feel like TSHit.

shaws profile image
shawsAdministrator in reply toRobinAnn

I didn't know there was a 100mcg T3 tablet. I only thought there was 20mg (UK) or 25mcg (abroad)?

shaws profile image
shawsAdministrator in reply toshaws

Do you take your dose on an empty stomach and wait about an hour before eating?

RobinAnn profile image
RobinAnn in reply toshaws

My 100 mcg is German. Hopefully I will soon have a Turkish 100 mcg to try. 100mcg is much more cost effective and doesn't require jamming such a huge mouthful under the tongue. I still get a rx here but not sure how much longer since I'm refusing their t4 therapy ( busy working the system though)

Currently take my full dose first think in morning and hold off on food for an hour or more. Just green tea until breakfast.

shaws profile image
shawsAdministrator in reply toRobinAnn

You don't dissolve under your tongue. You should take it with one glass of water as the molecules in thyroid hormones are too large to be absorbed by the tongue so you may not be getting the amount you think you're taking.

I didn't know there was a 100mcg. :)

All thyroid hormones have to be swallowed with one glass of water and wait for about an hour before eating as you are doing.

RobinAnn profile image
RobinAnn in reply toshaws

No way.. I've been doing under the tongue for years😢.

Crap!

Thanks for that amazing heads-up

shaws profile image
shawsAdministrator in reply toRobinAnn

Many people think it can dissolve. Google and you'll see medical responses. Really we shouldn't have to do this if we got treated optimally.

I'd just carry on with your 10mcg increase :)

RobinAnn profile image
RobinAnn in reply toshaws

Starting tomorrow I'll take my t3 with a glass of water. I'm super curious if that changes things. I hope so. I woke so depressed today. I've so had enough.

shaws profile image
shawsAdministrator in reply toRobinAnn

It might not happen quickly and I think it will take a few days anyway to settle. I had to change from one T3 to another.

EbonyEvans profile image
EbonyEvans in reply toshaws

There’s a 75mcg called Triyotex too.

RobinAnn profile image
RobinAnn in reply toshaws

Shaws, one of the links you included was actually a download of a chapter from Dr. L's book. Do you have any more of those?

Hillwoman profile image
Hillwoman

It's possible that you also have partial peripheral resistance/insensitivity to thyroid hormone. In such cases people have to take supraphysiological doses of T3 (no T4) before they see much effect.

I'm slowly increasing my own T3, having very belatedly realised that insensitivity to TH is one of my hypo-T problems. Currently I'm on 150 mcg, taken once daily when I wake. I've seen a few improvements, but I think I need to bump it up a bit further. Oh, and it's very important to keep on monitoring pulse, basal temp, BP, pattern of symptoms, nutritional status etc.

RobinAnn profile image
RobinAnn

Hillwoman, yeah, that all makes sense. But at what rate or frequency do you raise and how much do you increase each time?

Do you dose purely by symptoms or do you test your blood?

You wrote ...insensitivity to TH...

What is TH?

shaws profile image
shawsAdministrator in reply toRobinAnn

Going by symptoms is simpler than blood tests.

web.archive.org/web/2010103...

RobinAnn profile image
RobinAnn in reply toshaws

I agree. Especially since I have doctor allergy.😂

Hillwoman profile image
Hillwoman in reply toRobinAnn

Sorry, I've only just seen your reply...

TH is thyroid hormone.

The rate and frequency of increase in T3 dose has to be judged on personal response, as everyone is different. I'd been without adequate thyroid hormone since infancy when I started on T3 monotherapy at age 43/44, and consequently my heart over-reacted to small increases. Eventually, the palps would settle. Nowadays I find that I get palps etc. when I need to increase the T3 and my heart settles down again afterwards.

RobinAnn profile image
RobinAnn in reply toHillwoman

Hillwoman- that's really interesting regarding the palps. I've had them as long as I can remember. They got much worse on t4. But when they did an EKG nothing showed up. Lately they seem to be increasing again. Although not really even sure what it is- maybe more of a muscle flutter in my chest. It doesn't effect my pulse.

Hillwoman profile image
Hillwoman in reply toRobinAnn

Yes, if nothing is going on at the time of your EKG/ECG, the diagnosis is 'normal'.

T3sortedme profile image
T3sortedme

If you are definitely taking T3 which is Liothyronine (not T4 - which is thyroxin) you need to take in in divided doses spread over the day. I take mine at 6.45am, 12.00 and 5pm (20mcg each time = 60mcg per day). It is important to take them at exactly the same time every day. T3 only lasts so many hours and will not get you through the whole day on one dose. You may well need less if you spread it through the day. If you really need 100mcg I would take it as 40mcg at normal wake up time, 40 much at 12 and 20mcg at 5pm.

I've tried a range of doses and timing over the last 4 years and found this works well for me. We are all different so you will need to experiment a bit but consistency (same each day) and spreading the doses across the day are key. Your body adjusts to each change, so if you change something, keep it the same for a month before you alter it again.

Hope that's helpful for you. If you want to learn more, read Paul Robinson's book Recovering on T3. It is quite technical but the best book on the subject.

RobinAnn profile image
RobinAnn in reply toT3sortedme

Hey T3sortedme- yeah I'm really certain it's t3. T4 is a poison for my body.

Divided doses, not so sure. Right now I take all at once. Any time I try to divide I often forget until just after I've had something to eat.

So far with one dose I feel fine but if this changes as I increase I will certainly revisit that possibility.

Thanks for the book tip. How does he differ from Dr. Lowe?

T3sortedme profile image
T3sortedme in reply toRobinAnn

Listen to Sandy12. I don't know about impaired sensitivity but clearly is an issue for you. If what you are doing is working for you, stick with it. It is a big dose in one go but there is probably good reason for it.

Best of luck.

RobinAnn profile image
RobinAnn in reply toT3sortedme

You guys are so positive and supportive- something I'm often lacking.

I really appreciate it.

RobinAnn profile image
RobinAnn

Sandy12...that was well articulated. So far I'm definitely a Lowe type.

shaws profile image
shawsAdministrator

They are made particularly to dissolve in our stomach and then disperse the hormones (I am not medically qualified). Why would you not want the best from

Liquid levo isn't quite the same as its made differently, just like the sublingual tablet for heart which is made expressly to dissolve in mouth.

Why would you not want to have the 'best' effect possible from thyroid hormones.

RobinAnn profile image
RobinAnn in reply toshaws

Sounds logical.

shaws profile image
shawsAdministrator

I cannot find the link which explains what you describe above and it was by a scientist/researcher/doctor who wrote and published and treated patients by this method:-

web.archive.org/web/2010103...

web.archive.org/web/2010121...

Dr Lowe was also an Adviser to Thyroiduk.org.uk and Director of Fibromyaliga Research Foundation.

shaws profile image
shawsAdministrator

You are very fortunate as it is very rare nowadays to find his books/articles. This is an extract re fibro:-

Big Pharma Hits Pay Dirt: Fibromyalgia Patients Targeted as a Hugely-Profitable Drug Market. If you're a fibromyalgia patient, you're now targeted as a rich source of revenue from drug sales. Bookmark this page to soon read linked documents. These show the concerted efforts Big Pharma and its affiliates are devoting to you as a mother-lode of financial profit.

He wasn't afraid to speak his mind with regard to helping patients and in order to do so he had to relinquish his licence just as Dr P had to do.

Nutripea1220 profile image
Nutripea1220

Hi all, this thread is old but I’m looking for someone like me. My doctor says I have partial peripheral resistance and I am on 300t3. I was on 150 went I went to see him with hypo symptoms, still, and he raised me to 200, then 250 then 300 within 6 days. I feel no different. He says if I can tolerate 150 I have resistance. It all so frustrating. He explained some systems (heart for example) can race whereas other systems in our body can remain hypo. It’s nice working with someone so knowledgeable but frustrating to be the exception to the rule. My resting heart rate is about 82 on 300. Otherwise I still fell hypo. (Tired, low, weight gain).

ninalater profile image
ninalater in reply toNutripea1220

HI there, I am thinking I have partial peripheral resistance as well. I used to be on 10grains of NDT plus 75mcgT3, and was quite well for a good few years, had a jawbone graft surgery, then went cray hypo quickly after that. After a few years of trying to figure out why I suddenly got ill again, I figured out I probably had an RT3 issue from buildup and then the surgery made it worse. So I then made the switch last summer and did the RT3 clearing protocol by going to 1grain NDT and the rest as T3. Currently at 1grain and about 130mcgT3 and still horribly hypo.

How are you feeling now on 300mcg? My old NDT dose equals to 325mcg T3, and if I add in the additional 75mcg T3 I used to take with it, I should be on about 400mcg T3. I'm not sure I should go that high because it seems like so much. Any info would be appreciated since it's hard to find info online about peripheral resistance dosing. Thanks and best wishes on your journey to health!

jennygrigg profile image
jennygrigg in reply toninalater

Hi ninalater

I know this is an old thread but I am always looking for answers to help my 23 year old daughter who has hashi's and Addison's disease. I am really excited to read of others who are taking mega doses of t3 :) My daughter is on 400mcg t3 and whilst she feels better she is not yet optimised. We have to self treat (in Australia) as doctors rarely use t3 and consider anything over 100 as extremely dangerous. My daughter still has low temps, slow pulse, struggles to maintain weight, poor sleep, dry skin ....... the list is endless. How are you feeling now? Have you increased your dose further?

jennygrigg profile image
jennygrigg in reply toNutripea1220

Hi Nutripea1220

I know this is an old thread but I am always looking for answers to help my 23 year old daughter who has hashi's and Addison's disease. I am really excited to read of others who are taking mega doses of t3 :) My daughter is on 400mcg t3 and whilst she feels better she is not yet optimised. We have to self treat (in Australia) as doctors rarely use t3 and consider anything over 100 as extremely dangerous. My daughter still has low temps, slow pulse, struggles to maintain weight, poor sleep, dry skin ....... the list is endless. How are you feeling now? Have you increased your dose further?

Nutripea1220 profile image
Nutripea1220

Hi,

I feel for her greatly. Do try a phone consult with Dr Hugh Melnick in NY. He really doesn’t charge unreasonably for phone consults, from what I’ve heard. He can help you. No affiliation, just a kind doctor.

My personal experience was that 300 made me feel weird. I can’t explain it. Not shaky, my heart felt fine, I was still cold, but I felt a ‘heaviness’ in my throat/ chest area. It was annoying. My other doctor said I was fine - but I reduced to 250. On 250 I feel like I should be taking more but don’t have that weird feeling. He wanted me on 450! So go figure. It’s a frustrating game of whack a mole!

I am 45 and my skin is unbearably dry. I guess that’s not a side effect but it’s my only annoyance. As for weight: I lost about 1 lb a month... so 20 lbs in 20 months —in other words it was very very slow ( with fluctuations it seemed like it wasn’t moving at all... I just focused on each new low) but I’m back where I started and happy.

The frustration for me is that on 250 I definitely still have hypo symptoms. That one doctor I saw said to increase to 450 and take beta blockers, but I personally didn’t want to do that. I’m not saying it’s wrong. I prefer my Dr (Melnick) who explained sometimes you have to settle about half way rather than risk making some systems hyper.

I tested my bones and they are a-ok!! Perfect!

The only thing I would say is that for a time my estrogen had rocketed (1700!!!!!) and now it’s about 10. I think I’m in menopause, but I do believe there’s a relationship between estrogen and t3, though not one I can properly explain. If estrogen is high then t3 can’t do it’s job, or something like that.

Now I have no estrogen or progesterone (I went from 1700 to 10 in a month). 😐

Your daughter is young so that won’t be her issue.

Try calling Melnick. He’s lovely. I think about 68years old and so smart. No affiliation, he has just helped me so much. I know he had a patient on 600. We are oddities, but not alone!

Best luck -keep us posted. This is so awful. You are lucky you can find t3. My pharmacist balked, and needed a call from the doctor!

jennygrigg profile image
jennygrigg in reply toNutripea1220

Thank you so very much for your detailed reply and your thoughts. :) I will follow up and do some research on Dr Melnick. I

I wonder if you estrogen rocketed because of it's inverse relationship with cortisol. Cortisol is required to transport t3 to our receptor cells and high doses of t3 require high amounts of cortisol. Many people have low adrenal function and the lower your cortisol levels the higher your estrogen will be. Just a thought, but it sounds as though your body has adapted and/or menopause has lowered estrogen levels.

Again thank you and I wish you health and happiness.

Nutripea1220 profile image
Nutripea1220 in reply tojennygrigg

Thank you so much. So so sorry about all those type os. I have a horrible habit of typing texts and sending without reviewing. I apologize several times a day. You’d think I’d learn! Apologizing takes longer than it would to edit in the first place, but I am too enthusiastic.

Good luck. And I do believe there are doctors out there who understand this. Mine could possibly refer you to someone closer?

If your daughter is taking 400 and I was taking 300, and here we are chatting, we are clearly resistant because these doses would be fatal to someone who responds to 65.

jennygrigg profile image
jennygrigg in reply toNutripea1220

:) You are absolutely correct about the high doses! I have looked at Dr Melnick's site and will also search for doctors here in Australia.

I will keep in touch too. It is really nice to be able to speak to someone else who knows about this condition. Thank you and good luck.:)

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