I have worked my way up to taking 80mcg of T3 Thybon - as soon as I started at this dose - I felt fab everything started working and I felt great- around one week later and I have slumped again - do I increase?
Does anyone else take this much T3? : I have... - Thyroid UK
Does anyone else take this much T3?
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Steni
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shawsAdministrator
It is difficult to advise another what to do as the majority on this forum are not medically qualified (even qualified doctors may not know the answers).
However, there is something called Thyroid Hormone Resistance which means the cells are resistant and those who are resistant have to take much larger doses than a normal dose.
There was one of our Advisers, now deceased, who was an expert on Thyroid Hormone Resistance and those who have this condition only recover on exceptionally high doses of T3. You must keep an eye on your temp and pulse and if either goes too high, drop to previous dose.
Dr Lowe advised a 1/4 tablet every 2 weeks whilst trying to get an optimum dose.
In this link there are a number connected with Resistance.
google.com/search?client=fi...
That’s very interesting. Just going to read that article now - thank you
Sadly not ONE word did I understand 😪
Apologies, that was NOT the best link. This may be easier and usually people whose TSH doesn't fit the requirements and their T3 receptor cells have difficulty in getting the T3 into them. I will also state I'm not medically qualified.
There are other informative topics at the top of the page. This site is now archived as Dr Lowe died through an accident.
How big was the last increase? I think it might be worth going down one notch first to double check that you’re not feeling worse due to the increase working through your system. You’ll soon know, if your symptoms were to improve on dose reduction you know you definitely don’t need the increase. I say this because for me, it is much harder to identify a dose which is too high.
Another interesting thought, I’ll try it but I’m thinking it’s not likely because this happens with each increase which I do because I start feeling bad again so I add more - or is that what you just said 😂I’m hopeless - confused doesn’t cut it. I never get any palpitations or any of the other sides of too much - I wish I did just so I knew my body really was functioning.
If the dose is too low then hypo symptoms return and return again a while after each increase ... until you get to the right level for you. Good luck
If the dose is too great then the T3 will go to return T3 and leave your system. The best way to deal with this is to lower the dose to your last level , see how you feel. If you feel under replaced rise by half of your current level.
SlowDragonAdministrator
Looking at your past posts you seem very cavalier in your approach, often running out, or forgetting to take Levothyroxine, or adding in extra doses. Hopping about
It doesn't work like that, each time dose is changed it takes months for the body to adjust
If your changing dose every 5-10 weeks then it's never going to settle, it's incredibly easy to miss the sweet spot
When were vitamin D, folate, ferritin and B12 last tested?
Do you supplement for any deficiencies?
Do you have Hashimoto's? If so are you on strictly gluten free diet?
Consider my knuckles rapped.
Steni,
T3 requires balanced blood sugar levels to become active. Within our cells, mitochondria requires sufficient supplies of glucose fuel, thyroid hormone and nutrients such as B vits, magnesium and Coenzyme Q-10, etc to create that wonderful metabolic energy.
Therefore, even if you have sufficient thyroid hormone in your blood stream, if you don’t eat well to allow sufficient glucose being able to enter your cells, T3 will not be able to work as it should.
Have you considered adrenal problems ? Cortisol issues can inhibit thyroid meds from working by causing a reduction of receptors or receptor insensitivity to thyroid hormone.
All hormones work together and it is common for elevated T3 levels to cause SHBG (sex hormone binding globulin) to rise, which could bind to thyroid hormones making it inactive.
Also be aware that elevated T3 can silently be encouraging more bone absorption than bone production with a net loss of bone mass, eventually resulting in osteoporosis .
It is not advisable to raise your T3 dose without testing your free T3 levels. Have you had iron & nutrients tested ? Have you had SHBG tested ?
Thank you - like many others I am not using my blood tests as my guide - but aiming to notice the relief of symptoms and adverse reactions. I don’t think this is an unusual approach and accordingly I would think waiting for more than 10 weeks to make an increase in T3 was unnecessary ? I am concerned however by your comments about the other possible factors that could be causing resistence and I will check these checked out.
Steni,
I haven’t heard of waiting ten weeks for a dose adjustment. Six weeks is the recommended norm for T4 but T3 is usually a week and done by pulse, temp & symptoms.
The reason for testing is to ensure levels haven’t become so massively elevated that other negative factors may have come into play.
You may find reading “Recovering With T3” by Paul Robinson to be a useful tool.
Apologies I got confused with the replies. It was Slow Dragon who mentioned this - see her reply to mine above which seems to imply that changing doses ‘every 6 to 20 weeks’ was cavilier. I thought 6 weeks was fine for changing doses?
I too have the same reaction as you to increases! Over the years I have learned that 6 weeks was indeed too quick for me to increase (or decrease) doses and need to wait at least 3 months. This includes staying on the same dose, but changing the timing - and only changing the timing of one dose at a time. I think I'm fairly rare, so this may not apply to you, but saw the above comments and thought I'd mention it just in case. It can be frustrating to wait so long when you just want to feel well again. Especially when you get a glimpse of it during each increase.
What is you pulse and temperature Steni? these are the best guides to dosage, especially if you have resistance. Also you do need your B12, ferritin, folate and Vitamin d tested.
Steni in reply to
My tempreture remains low - Mandy
Then there’s your answer. I’m crap at testing pulse but I’m constantly checking my temperature as I’ve had to change brands of NDT
in reply to Steni
Steni. Your body is not able to use the thyroid hormones you are taking very well. This can be because of low B12, low ferritin, low Vit D or low folate. It might also be because of adrenal issues or because you have thyroid resistance and will need very high levels of hormone.
If you are taking high levels of thyroid hormone it is important to be taking your pulse. I expect there are utube instructions if you haven't got the knack of it yet.
Yes! I take 87.5mcg T3 (and possibly rising) others here may take higher doses, however T3 is a very potent hormone and overmedication is to be avoided.
Daily monitoring of both heart rate and basal temperature is important to avoid overstimulation as is increasing your dose by no more than 5mcg/6.25mcg (quarter of your tablet strength) no sooner than every 2 weeks. This is not a quick fix remedy (think headache/paracetamol!) and must be followed with due care.
You may find this ebook helpful, I certainly did.
It's available on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton.
I also found the work of the late Dr John Lowe very helpful
Not much to add except, higher dose T3 is capable of making you feel good regardless of thyroid hormone deficiency. With T3 it is very easy to over replace and suppress TSH, which can reduce bone strength amongst other things and chronically downregulate the HPT axis.
T3 can make you feel better for a short while even if it's not actually making you better, and this effect usually crashes after a short while.
Bear this in mind when considering upping T3 dose.
A suppressed TSH does not reduce bone strength. That just isn't true.
Suppressed TSH might not be a direct cause of bone loss, however TSH has been shown to help prevent bone resorption, and is one of many factors involved.
anonymous45,
"TSH has been shown to help prevent bone resorption"
Can you please point us at the source for this information?
RedApple,
I once read about research into Mice TSH that effects both osteoblastic bone formation and osteoclastic bone resorption but considering many of us on the forum operate on suppressed TSH's, it can't be very significant.
I considered it applied more to the natural decrease of TSH that comes with old age and the frailer skeleton.
Please see my response below. Bone metabolism is obviously very complex, with many factors involved. I simply wished to point out that there is likely TSH involvement in bone resorption.
A meta analysis also found no causal link. This conflicting research is common when not much is yet known about complex mechanisms such as the involvement of thyroid hormones and thyroptropic hormones in bone metabolism.
If that is so, why aren't all of us who've had a suppressed TSH for years, falling apart due to reabsorbed bone? I, too, would like to see the justification for that statement. 
Because there are dozens of factors involved in bone metabolism. Suppressed TSH is only a risk factor for bone mineral density loss. Having suppressed TSH does not automatically result in osteoporosis; but the research suggests that it is able to negatively impact bone metabolism.
I fully understand that TSH needs to be suppressed for a number of reasons, or as a byproduct of requiring moderate-high doses NDT or T3 to be healthy and happy. I only wished to point out the potential risk of this.
Sounds more like scare-mongering, to me, because you stated it as a fact. And to people who are new to this, that's pretty scary.
It really is.
I know, that's why I questioned it.
My planned journey to India isn’t going too well ! Having obtained a new prescription of T3 and packing it carefully into my hand luggage - the case is now lost at Heathrow and I’m without any Thyroid meds in Mumbai !
Oh, no! That is terrible. Hope they can get it back to you soon. You probably won't feel any effects for a few days - I once went for six months without!
You can buy it over the counter there. I was in India a couple of years ago and found it easy to obtain. I was with people who live there though which I suppose made it easier for me. I do hope you get sorted. Have a lovely time and take care x
I assure you that wasn't my intention. I only wish to inform based on the little knowledge I am able to pick up from medical literature.
I do understand your concern however, and I will try to balance information sharing with a little more empathy in future.
TBQH, I don't know what isn't scary about having to take medication for the rest of my life to stay alive. I do tend to get too wrapped up in the science, probably because getting an explanation and trying to understand are comforting to my logically-focused brain; and thus I apologise if I was too quick to comment.
I do understand. And, I do have a tendency to be like that, myself. I've scared the life out of more than one poor soul with my over-eagerness to share the gory details, and I've had to learn to restrain myself. It's best if we can break things gently, and at a speed that matches the person's learning curve. x
There is likely involvement of TSH in bone formation and resorption due to the presence of TSH receptors in osteoclasts and osteoblasts. There are studies indicating a causal link between TSH and bone density, even when T4/T3 are controlled for.
ncbi.nlm.nih.gov/pubmed/189...
endocrine-abstracts.org/ea/...
nature.com/articles/boneres...
hindawi.com/journals/ije/20...
ncbi.nlm.nih.gov/pubmed/146...
These studies suggest that anywhere within the normal range for TSH has little effect on bone mineral density, but that suppressed TSH is associated with lower BMD and high TSH is associated with higher BMD. TSHR knockout mice treated with exogenous thyroid hormones (they produce no T4 or T3 of their own) had low BMD even after normalisation of hormone levels; suggesting the TSH receptor is involved.
Some studies suggest a relationship, but are not able to conclusively state whether TSH or excessive fT3 is the cause:
thyroidresearchjournal.biom...
Some studies show that excessive T3/Circulating active thyroid hormones are indeed a cause of bone loss in hyperthyroidism, with a small or undefined contribution from TSH.
academic.oup.com/mend/artic...
TL;DR - T4, T3, and TSH are all likely involved in maintaining bone mineral density. The research into TSH being a culprit is relatively new, and there are not yet enough studies to conclusively prove a causal link. However, there is plenty of evidence to suggest that TSH is at very least somewhat involved, independent of circulating thyroid hormones.
Is it the same isoform of TSH that is supposedly involved in bone resorption as in managing thyroid hormone?
ncbi.nlm.nih.gov/pmc/articl...
I find this issue about low TSH being a problem very difficult to accept. When low TSH truly indicates excessive thyroid hormone levels, yes, there is an issue. But can anyone prove it is the low TSH that causes anything?
Take a typical reference range for TSH of, say, 0.4 to 4.0. That means that any amount of TSH in a range that at the top is ten times that at the bottom is OK. Yet it is the final step of around one tenth of that range, dropping from 0.4 to zero (or possibly 0.1 or whatever other value is taken as "suppressed") that causes all the problems?
Even more ridiculous, if someone has a high TSH of 40, they might be diagnosed hypothyroid, but no-one shouts that such a massive level of TSH will in itself be affecting bones. Bear in mind, 40 is 100 times 0.4. Yet eyelids are not batted.
That's a good point, to my knowledge (and after a quick scan down that journal article); the different isoforms differ in activity but have unknown selectivity (no evidence I can find). I still need to find time to research and understand this properly though, so it is possible; though relatively unlikely.
The TSH-R gene, coding for the receptor has 3 confirmed isoforms also (with 2 additional potential isoforms under study). These as of yet don't appear to alter in ability to complex with TSH, but likely are involved in different functions (e.g. hypothalamus vs. osteoclasts and osteoblasts).
One of the studies I linked discusses that hypothyroid patients with elevated TSH have higher bone mineral densities, however due to other dysfunctions arising from thyroid hormone deficiency, these bones are still weaker despite higher density. This study suggests that whilst hyperthyroidism/graves has a higher risk of osteoporosis; a hypothyroid patient is still at greater risk of fractures.
This seems to back up what several other studies have found, in that a TSH within the wide "normal" range does not alter bone metabolism; if there is an effect of TSH, it is only in the extremes at high and low ends of the spectrum.
Oh lord - what have started. I don’t
understand a word of it and truthfully I’m not going try, too much information for me and it seems like many others don’t agree?
I wouldn't worry about it. It's a discussion often held on here, and the more you read it, the more you understand.
Apologies for the excessively scientific discussion. I fear I accidentally derailed your post by wanting to get the science right.
On a more personal note, my only recommendation would be (for anyone with chronically suppressed TSH): get a bone density scan every few years - just to be on the safe side. This is only really crucial IMHO if the patient is an aging post-menopausal female, as they are most at risk of fractures.
However, I shall refrain from posting on this thread anymore lest I continue to interfere with the intended topic. Best of luck getting healthy and my apologies again!
How would you know if it ‘wasn’t actually making your better’ if you couldn’t rely on how you felt what would you rely on??
T3-- including that in NDT-- suppresses TSH. Period. Greygoose is correct. That's not a cause of reduced bone strength. I knew this from my own research, but was touched when my endo told me to let my GP know that suppressed TSH is totally normal when taking any form of T3. Mine tests <0.01
Do you take your T3 in a single dose, if you are THR then splitting is unlikely to work.
Time of dose very much depends on what works best for you.
I started with a bedtime dose but have now moved to early morning.....I sleep better.
Low temp signals THR....mine is still low.
When you increase your dose your body will initially react to that but if the dose is still too low symptoms will creep back.....just my experience I'm not a medic.
Have you had a blood test recently?
I take it all in one go - as per Dr Lowes thinking ( flooding the cells) and I must say that apart from sluggish bowels and weight I cannot describe how much better I feel- I have a Buisness and work with my family who cannot recognise me from the confused slug creature I was before T3. I just wondered if I could get Reid if the remaining symptoms by increasing but on the advice here I will wait - I have been in 80mcg for 5 weeks so I will wait until it’s been 3 months. The thing is because T 3 has such a short half life , I thought it worked straight away - it certainly feels like it does. ?
I understand that 6 weeks is the recommended interval between testing/ increasing dose.
Personally I wouldn't wait 3 months...just remember to check temp and pulse daily, any rise above "normal" suggests overmedication.
Sluggish bowels suggest under medication.
Glad you feel so much better T3 has certainly improved my wellbeing tho' I'm not quite on an optimal dose yet.
Only my opinion but I'd be inclined to add another 6.25mcg after 6 weeks, if, after a couple of days it feels too much then drop back again and re test/wait a bit longer.
Listen to your body!
Take care
DD
I have been taking 75 mcg for a long time, now - about 5 years. Normally that is ok. Last night, I noticed my skin was getting scaly again - always a first sign for me of under-medication. So, this morning I increased by 6.25. I'll see how it goes.
We need what we need, and comparing doses isn't much help to anyone. And, if you're going to dose by symptoms, you need to know your body very well.
My doctor has patients on 10 grains of NDT. That's 350-380 mg of T4 (depending on brand) and 80-90 mcg of T3. It's possible they have thyroid hormone resistance, but they need that much to feel fine and rid themselves of all hypo symptoms.
Np thyroid
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