T3 high help : Hi All, I would be grateful for... - Thyroid UK

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T3 high help

lisaas profile image
54 Replies

Hi All, I would be grateful for some expert advice. I have had hypothyroidism for many years. I did well on levothyroxine up until about 2 years ago. My t3 was at the lower end of the range. So in my wisdom (or stupidity) I decided to try t3 only. I weaned down the t4 and added in the t3 slowly until I reached 75mcg. I take this in 2 split doses. I feel great,the best I have ever felt. The swelling and oedema I had is less,my memory is getting better, I have more energy etc. But my gp is worried because my blood test are abnormal. They are tsh 0.01 (0.3 to 4.9) t3 9.0 (4.00-7.2) t4 1.2 (12 to 22)

Do I need to lower my t3? Do I need to do anything with the t4?

Thanks in advance ☺️

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lisaas
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54 Replies
DippyDame profile image
DippyDame

I can only refer to my own experience... I'm T3-only too.

When taking T3-only FT4 and TSH drop naturally and FT3 will rise.

Your labs are reasonably "normal" for 75mcg T3

That is just how the body works.

Your GP doesn't appear to understand this.

S/he is no doubt focussing on TSH

On T3-only signs and symptoms are used to monitor the dose

On T3-only we are often told FT3 should remain within range to avoid overmedication

However some of us need the higher dose to overcome hormone resistance which can cause low cellular T3....and ill health.

To avoid overmedication regularly monitor resting heart rate and basal temp and be aware of hand tremors.

We are all different!

If I felt as you do I would be maintaining the status quo

If splitting is working well....good.

I take my full dose at bedtime so we'll away from all food and drinks.

You may find this reassuring

thyroidpatients.ca/2019/08/...

Good to hear that you feel well now.

lisaas profile image
lisaas in reply toDippyDame

Thank you! This is very reassuring 😀

Alejandrita17 profile image
Alejandrita17

Be careful with insuline resistance. Taking t3 puts you at risk.

radd profile image
radd in reply toAlejandrita17

Alejandrita17,

Only high amounts.

jendwall profile image
jendwall in reply toradd

What is considered "high amounts" of T3? And what if you need the T3 and you have insulin resistance? What do you do?

Alejandrita17 profile image
Alejandrita17 in reply tojendwall

It's a cost-benefit desition.

radd profile image
radd in reply tojendwall

jendwall,

An excess (or inadequate) amount of T3 is subjective for each person. And the amount each requires is of no less importance, ie I require a little but without that essential ‘little’ I simply can not convert enough T4 meds to retain well-being.

This is because for many people the way their conversion enzymes work is in the presence of a little exogenous T3 the enzymes action becomes up-regulated so conversion abilities increase. This means we end up with a lot more T3 in our body’s than the amount we medicate (or additionally make if we still have some thyroid gland working).

For others that extra T3 amount will make little difference to their conversion enzymes due to further impaired de-iodination and so requiring larger T3 doses, maybe even whole replacement (T3-only meds). The T4:T3 ratio is different in every person and it is only finding that ratio that brings & retains our well being.

T3 will only drive insulin resistance if the amount is too high for own individual needs as its abilities in potentiating insulin signalling, cell sensitivity and improved storage & synthesis may actually contribute towards reversing insulin resistance as happened in my own case.

Therefore, having insulin resistance is not a reason to not take T3 if you need it, but only if you do actually need it, evidenced by labs & symptoms when every other avenue to increase T4’s performance has been explored, as many add T3 much too early in there recovery regime which then muddys the waters later when recovery isn’t achieved, and conditions such as insulin resistance have appeared.

jendwall profile image
jendwall in reply toradd

Thanks for the time you took in answering!

thyr01d profile image
thyr01d in reply tojendwall

My consultant considers over 40 mcg a high amount. That said, he prescribes according to my symptoms and asks my GP to do regular heart and bone checks.

jendwall profile image
jendwall in reply tothyr01d

Would you please be willing to share what specific heart and bone checks your doctor runs? Thank you.

thyr01d profile image
thyr01d in reply tojendwall

Yes, of course, ECG for the heart and DEXA scan for bones.

Alejandrita17 profile image
Alejandrita17 in reply toradd

But what about the peaks you have once you take the pill? That's My main concern.

radd profile image
radd in reply toAlejandrita17

A17,

I agree high peaks can bring unwanted side effects and the reason why those of us sensitive to T3’s powerful actions have to multi-dose.

shaws profile image
shawsAdministrator in reply toAlejandrita17

I take my one daily dose of T3 when I awake. I have no clinical symptoms, feel well and body is calm and normal.

Aunds profile image
Aunds in reply toAlejandrita17

Hi Alejandrita17 . I haven’t heard about high T3 and insulin resistance, could you say a little more or point me in the right direction. Thank you.

Alejandrita17 profile image
Alejandrita17 in reply toAunds

Talking t3 can impair glucose metabolism. I think it is even said in the package. That's why if you take t3 you have to often check your sugar levels. Google "t3 and insuline resistance" and You Will find many papers on this subject.

radd profile image
radd in reply toAunds

Aunds, lisaas , Capella1 ,

T3 is the active hormone that increases metabolism. Everyones required amount varies and those who medicate T3-only (so a substantial amount) are more at risk of blood glucose issues by increasing gluconeogenesis in the liver (glucose synthesised from noncarb sources, ie amino acids, glycerol, etc) . This continued high glucose output then leads to cell insensitivity and classic insulin resistance that then exacerbates the condition further.

All research refers to insulin resistance in the state of hyperthyroidism as the result of mainly heptic influence because of the exact same driving mechanisms.

The insulin resistance may then become further compounded by high levels of cortisol which is also a driver for gluconegenesis (along with glucagon, growth hormone, adrenaline, etc), and leptin resistance. Leptin (known as the hunger hormone) puts our body into starvation-mode when high glucose levels remain constant in the blood stream that can not be used efficiently, and will hang onto fat stores (same mechanisms as when we follow a calorie deficient diet).

Leptin is made in our fat stores so the more fat we accumulate, the higher our leptin levels become. When leptin resistance occurs (similar to insulin resistance), we may remain hungry after eating as the brain-tummy connection is lost, so are more likely to overeat.

We need balanced glucose levels, insulin & leptin to be able to utilise thyroid hormone meds effectively, or meds can start working against us. I have read research showing as soon as leptin levels reduce the up-regulated D3 enzyme that will be converting T3 to an inactive form will stop, and T3 meds become more effective again.

This whole catalogue of events means recovery becomes further distanced and why once over-weight it can be difficult to lose. It also exemplifies how just ‘upping the old thyroid meds’ in an effort to boost metabolism to shift some weight can dramatically back fire.

Aunds profile image
Aunds in reply toradd

Dear Radd. Wow that’s so informative, thank you for taking the time to write such a detailed reply. That’s so helpful thank you.

lisaas profile image
lisaas in reply toAlejandrita17

Ooh I would be interested to know more too

Capella1 profile image
Capella1 in reply toAlejandrita17

I want to no more please becasue am on metavive with T3

thyr01d profile image
thyr01d in reply toAlejandrita17

This is really interesting Alejandrita, please, could you pm me more info or a source?

Alejandrita17 profile image
Alejandrita17 in reply tothyr01d

Here's a link:

ncbi.nlm.nih.gov/pmc/articl....

Alejandrita17 profile image
Alejandrita17 in reply tothyr01d

The main problem is the peak right after you take the medication.

Heloise profile image
Heloise

My test results are similar to yours and I've been on T3 only for several years. An endocrinologist thought I must be causing some sort of damage although every test she did in the office I passed. I asked what damage. She said it would take more testing to find out. She was very hostile at the start and maybe I should have asked her to do them but I doubt she would. If you have no hyper symptoms I wouldn't worry. T3 only may be a new paradigm for them.

lisaas profile image
lisaas in reply toHeloise

Thank you 😊 this is really reassuring. I'm feeling so much better too so I really don't want to go backwards and feel horrid again.

Heloise profile image
Heloise in reply tolisaas

Hang in there. The Canadian website that Dippy posted is all about T3 or have you seen it already because they claim 75 mcgs T3 is the proper dose for many people.

shaws profile image
shawsAdministrator in reply toHeloise

I only need a T3 dose of 20 or 25mcg early a.m. to feel well and symptom-free.

Heloise profile image
Heloise in reply toshaws

That's good, shaws. I don't think they meant EVERYONE needs 75 mcgs. but weren't you on a higher dose previously? It's on that Canadian site that DippyDame posted.

shaws profile image
shawsAdministrator in reply toHeloise

Dr John Lowe took a higher dose as he was 'resistant' to thyroid hormones.

Heloise profile image
Heloise in reply toshaws

Perhaps that is what stuck in my mind. Did he ever explain why he was resistant? Do you think the dieodinase were dysfunctional?

shaws profile image
shawsAdministrator in reply toHeloise

I will try to find out what caused Dr L's resistance.

shaws profile image
shawsAdministrator in reply toshaws

This might be a reason:

Terminology

Sometimes the phrase thyroid hormone resistance is used to identify cases where patients with autoimmune thyroid disorders respond poorly to normal doses of replacement thyroid hormone, this is thought to occur where patients have developed antibodies to thyroid hormones. Antibodies to thyroid hormones quite commonly occur in such disorders, and may interfere with the normal clinical assays used in monitoring such disorders, and in unusual cases may have further independent clinical significance.

psychology.fandom.com/wiki/...

Heloise profile image
Heloise in reply toshaws

Thank you, shaws. That website will take a while to peruse and lots of food for thought. I've been looking at sarcoidosis lately and this statement caught my eye. Dr. Marshall has invented a protocol for Sarcoidosis and autoimmune disease that is proving to free many thyroid hormone resistant patients from their symptoms and their large doses of medication.

The entire immune reaction seems wide open for good reason due to the complexities and mutations involved.

Thank you, again.

shaws profile image
shawsAdministrator in reply toHeloise

My dose was higher but have found that a lower dose of T3 is now needed. I can adjust T3 'according to how I feel'. At present I have no symptoms and feel well.

Heloise profile image
Heloise in reply toshaws

Thanks, shaws. I will keep that in mind. I had a small crisis during mail lapses from the Covid and delivery problems. I thought I might run out so I was taking doses every other day and it didn't seem to make a difference so maybe I don't need as much either.

shaws profile image
shawsAdministrator in reply toHeloise

Heloise, it seems that for many of us it is a matter of'trial and error' and hopefully the 'trial' can lead us to being symptom-free.

helvella profile image
helvellaAdministrator in reply toHeloise

I find it appalling that:

In countries that have 25 microgram liothyronine tablets, 75 micrograms is usually the amount regarded as a full dose.

In countries that have 20 microgram liothyronine tablets, 60 micrograms is usually the amount regarded as a full dose.

The difference appears almost entirely down to the convenience of prescribing three tablets a day. 15 micrograms of liothyronine is a significant difference. 75 is 25% greater than 60.

Heloise profile image
Heloise in reply tohelvella

I know. I think you can still get 5 mcg. tablets but cutting tablets is ridiculously difficult if you break up your dosing. And then there is a potency issue. thyroidrt3.com/which.htm

helvella profile image
helvellaAdministrator in reply toHeloise

I so wish that thyroidT3 site would get updated!

RedApple profile image
RedAppleAdministrator in reply tohelvella

Agreed. It is so out of date that it's actually useless now. So the author should either update it or remove it.

Heloise profile image
Heloise in reply tohelvella

I still consider it somewhat useful. Cynomel and Tryotex are still sold online and I agree with their opinions on both. Actually the Viatris link is pretty interesting although I just took a glance. Cynomel is going out of supply again, haha, so right up to date.

helvella profile image
helvellaAdministrator in reply toHeloise

The Viatris link only works because the Mylan site redirects you to Viatris!

But what it doesn't tell you is that Viatris was formed by a merger of Mylan and Upjohn (a subsidiary of Pfizer). And that Greenstone is a brand owned by Viatris. And Greenstone Liothyronine has absolutely identical ingredients to Pfizer Cytomel and is made by the same company in Europe (Peptido GmBH).

And it confuses by implying that Generic T3 by Goldshield is different to Tertroxin. Which has never been the case.

And the UK has several additional liothyronine products from Morningside, Teva, Roma and (possibly) Accord and Colonis.

I suspect that you find some utility in the site because you know what is what. A newcomer would, I am pretty sure, be confused and misled.

Heloise profile image
Heloise in reply tohelvella

Perhaps YOU should have a website, Rod. (I'll be embarrassed if you do:) It's probably hard to keep up with all the changes in the industry.

Right now I would take any of the above! It would be good if we could count on reliable, affordable liothyronine. My son said he could get it in bulk if I were willing

to make my own tablet. Actually I think he could do that as well. hmmmm

helvella profile image
helvellaAdministrator in reply toHeloise

I have thought about it, but I decided that producing documents was a better approach. Partly because I don't wish to compete, or even be thought to compete, with existing websites.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/shcwdwpedzr93...

From Google Drive:

drive.google.com/file/d/12N...

helvella - Vade Mecum for Thyroid

The term vade mecum means:

1. A referential book such as a handbook or manual.

2. A useful object, constantly carried on one’s person.

Please don't get put off by the number of pages!

In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.

Not everything is in this one document - my major medicines document is still separate!

From Dropbox:

dropbox.com/s/vp5ct1cwc03bl...

From Google Drive:

drive.google.com/file/d/1ZW...

A PDF Conversion of Dr Lowe’s Thyroid Science Website

A conversion of some of Dr Lowe’s website into a PDF to help make it accessible.

From Dropbox:

dropbox.com/s/w7cjut689r1w1...

From Google Drive:

drive.google.com/file/d/1Rl...

helvella - Historical Context of Thyroid Treatment in the UK

Extracts of possible interest mostly from The Chemist and Druggist. These documents are currently still being developed.

Pre-1900 document

From Dropbox:

dropbox.com/s/h9mul6hdfqfew...

From Google Drive:

drive.google.com/file/d/1I4...

1900-1949 document

From Dropbox:

dropbox.com/s/a2wd7agpfcrcj...

From Google Drive:

drive.google.com/file/d/1iE...

1950-1999 document

From Dropbox:

dropbox.com/s/barcg7h4uj2nm...

From Google Drive:

drive.google.com/file/d/1ZO...

2000 onwards

From Dropbox:

dropbox.com/s/dwgrmoxqj24el...

From Google Drive:

drive.google.com/file/d/1gG...

That represents well over a thousand pages. Which anyone can download and read however they wish. Phones. Laptops. Tablets. Desktops. No need to have internet access once you have downloaded what you want.

And I do regularly update them!

Heloise profile image
Heloise in reply tohelvella

That is an amazing compilation, Rod! Of course I had to look up the famous people with thyroid disease, haha. It will be interesting to look at thyroid hormone in a more global way....or were you just deciding which country to visit. I doubt anyone is going to make corrections any time soon. It really must have been an enormous project and have to congratulate you for doing it! Are you also recommending pasta siringa:)

WaterLou profile image
WaterLou

I like DippyDame’s response. I have struggled with GP knowledge issues for 50 years. Over time, I developed my own protocol that works well for me. I reduced my Synthroid (275-175 mcg) to as low a level as comfortable, slowly, while increasing T3, both day and night doses of 5 mcg each. My GP seems to go along with me but it has been a slow learning process for him. Most Docs are reluctant to admit that they don’t understand the issues very well. But the advice to monitor HR and body temp, as well as how do you feel, is the best advice, but keep an 👁 on the numbers as a guide. Also refer your GP to the Doc that developed the TSH test, Dr, Robert Utiger. He warns Docs not to use TSH for therapy, it is a diagnosis tool. I could write a book of my experiences but why bother, they don’t listen to patients.

Lou

Litatamon profile image
Litatamon in reply toWaterLou

Hi Lou,

Can you guide me to monitoring HR and body temperature - a good explanation for me to understand.

Thank you in advance.

WaterLou profile image
WaterLou in reply toLitatamon

It’s difficult to say how you might need to monitor your metrics. I am male, 82 , so my experience may not correlate. I use temporal thermometer and pulse oximeter to monitor myself. I am very low HR, 50 BPM or less if I don’t keep my T3 up to a minimum. My goal is consistency. I discovered many years ago that my HR dropped to a very low number <35, during my sleep. I would awaken gasping for breath on many nights. After getting dressed and heading to the ER, my breathing was normal. My GP (who was also hypo) suggested T3 and that did the trick. Additionally, my short-term memory problems were solved. There is much more to the story but this limited forum is not equipped for attachments.

As an afterthought, I use fasting, 3 days per week. That technique yields excellent results in many ways, both in terms of chemistry and how one feels. For those fighting glucose issues, it works wonders.

I hope that helps,

Lou

JanePound profile image
JanePound

I’ve been on extended release T3 for over 20 years. I wear a Fitbit so I am always aware of my pulse, which stays around 62-72 bpm. If I were to have trouble with my GP, I would take my temperature before getting up and document it for additional proof that I’m doing well.

My TSH is almost non existent. I still have trouble losing weight but I continue to feel really well. I’m almost 69, do circuit training twice a week and recently added burlesque dancing to the mix.

lisaas profile image
lisaas in reply toJanePound

Do you also get really low t4 with t3 medication?

Another GP rang me abd he seemed a lot calmer about it all. He said as long as I'm feeling well he would not be concerned, but he would speak to my endocrinologist. My endocrinologist does not know much about t3 though.

JanePound profile image
JanePound

I haven’t set up my patient access request yet as this is a relatively new GP - we moved a year or so ago. I seem to remember that my T4 is non existent.

lisaas profile image
lisaas in reply toJanePound

I'm glad I came on here. All this information is really reassuring 🙂

shaws profile image
shawsAdministrator

Dr John Lowe, scientist, did not split doses as he stated that one dose should saturate all of our T3 receptor cells and they, in turn, sent out waves for the next few days. The following is what helvella copied.

dropbox.com/s/w7cjut689r1w1...

thyr01d profile image
thyr01d

Like Shaws, I no longer need as much T3 as I did, I feel as if my body now needs just a maintenance dose where at first it needed sort of replenishing - no medical evidence, just personal opinion, but maybe you too will be able to reduce gradually?

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