T3 prescription in the EU: Hi guys, I recently... - Thyroid UK

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T3 prescription in the EU

Hi guys,

I recently started Levothyroxine. For the first few days, for a part of the day I felt so much better, my mind was so much more sharp and I laughed for the first time in years. However this has faded to a great degree and I]m tired again.

I'm not from the UK, so I was wondering if you know of a clinic or a doctor within the EU where I can get a prescription for T3?

and merry Christmas!

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73 Replies
RedApple profile image
RedAppleAdministrator

thydroid,Welcome to the forum.

Presumably you have a doctor prescribing your levothyroxine? If so, why would s/he not prescribe T3 for you?

in reply to RedApple

Because it is "not generally recommended" and he would be "responsible" for that treatment so I should see an endo who may or may not be willing to do it. It's just a pain all around.

RedApple profile image
RedAppleAdministrator in reply to

Do post your most recent thyroid blood test results, which should have been done about six weeks after being on your current dose of levothyroxine.

And say what dose of levothyroxine you are currently prescribed. It may simply be that you need a dose increase.

in reply to RedApple

Hi RedApple,

I haven't done any 6-week labs. I'm taking 75mcg. My TSH was very mildly elevated, my FT4 low-, and TPO antibodies elevated.

SlowDragon profile image
SlowDragonAdministrator in reply to

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

in reply to SlowDragon

Fair points, I might try to do 125mcg/daily (which should be my dose).

How has your own experience been with T4? Are you working a 100% job? Do you feel healthy? I'm genuinely curious because I do not know of any T4 success stories in real life.

SlowDragon profile image
SlowDragonAdministrator in reply to

Never increase levothyroxine until after blood test and then only increase by 25mcg at a time

Next step is to get vitamins tested

Coeliac blood test too, just to rule it out, before trialing strictly gluten free diet

RedApple profile image
RedAppleAdministrator in reply to

thyrdroid " I might try to do 125mcg/daily (which should be my dose)."

There is no 'should be' dose. That is one of the dangers of reading literature written by theorists rather than those with real personal experience.

Your dose is the one that makes you feel best.

in reply to RedApple

There's nothing wrong with reading the literature to try to make sense of what you're feeling.

RedApple profile image
RedAppleAdministrator in reply to

Agreed! I have read plenty myself and some I can agree with, some I disagree with.

That's why I cannot emphasis enough that what works for me won't necessarily work for you or anyone else.

The literature might say my dose 'should' be a single 100mcg T4 pill. But if I feel best on 75mcg or 88mcg, or if I feel best by splitting my dose into two shots of 50mcg (e.g. one in the Am, the second in the PM), then that is what I need. Regardless of what any literature or theorist doctor says.

helvella profile image
helvellaAdministrator in reply to

But RedApple was pointing out that though there are formulas, most are deeply questionable.

For example, even if tablets were absolutely equal, and the amount your body needs were absolutely calculable, the variations in absorption from one person to another are sufficient to result in people needing different doses. Truth is there are many variables. Including whether you have any remaining thyroid function. If you have, there is no formula as all are based on full replacement dose.

I created a spreadsheet based on published formulas.

dropbox.com/s/ly6jzjqi0pe7t...

That there are multiple published formulas rather indicates there is no agreed single formula.

SeasideSusie profile image
SeasideSusieAdministrator

thydroid

If you've only recently started Levo and initially felt better, then it's an increase in Levo you need at the moment, not T3. Levo is titrated gradually until symptoms abate and the patient generally feels best when TSH is 1 or below with FT4 and FT3 in the upper part of their reference ranges. So you need to go back to your doctor for an increase in your dose of Levo, retest/increase every 6-8 weeks until your levels are where they need to be for you to feel well. Once your TSH is below one with a high in range FT4, if your FT3 is low in range suggesting poor conversion of T4 to T3 then maybe think about T3.

Also important are optimal nutrient levels for any thyroid hormone to work properly and before considering adding T3.

in reply to SeasideSusie

Does it take you 6-8 weeks to feel the results of an increase in Levo? I'm definitely not up for that.

SeasideSusie profile image
SeasideSusieAdministrator in reply to

thydroid

It can take that long for the full effects of a dose change (some people feel a difference sooner than that) and for levels to stabilise and show in results which is why we advise retesting 6-8 weeks after a dose change.

in reply to SeasideSusie

I'm more interested in feeling better than what the stabilised levels say. If I'm feeling fatigued and depressed then something is wrong. This is what I felt at first on Levothyroxine.

If you look at the diurnal rhythm of TSH, FT4 and FT3 in euthyroid patients you will see that FT4 is relatively stable whereas TSH and FT3 go through peaks and valleys. The FT3 follows TSH with a 90 minute delay. It is not unthinkable that TSH impacts FT4 -> FT3 conversion. TSH is suppressed by Levothyroxine intake.

SeasideSusie profile image
SeasideSusieAdministrator in reply to

thydroid

You're teaching granny to suck eggs here.

Of course how we feel is important to us, but unfortunately only test results are important to doctors.

Tell us about you.

When you were first prescribed Levo.

What was your initial dose?

Have you had a retest since then?

Have you had an increase in dose?

in reply to SeasideSusie

I'll just come out and say it. I don't believe in T4 monotherapy. All the people I know on T4 are fatigued, overweight and unhappy. I'm willing to bet you that their labs are fine. I'm sorry if I'm coming across as rude, I too am not feeling my best. I was for the first few days of Levothyroxine but this faded, which I believe is due to TSH suppression (further suppressing conversion).

SeasideSusie profile image
SeasideSusieAdministrator in reply to

Thydroid

Why not answer the questions?

If you haven't followed the normal protocol of gradual increases in dose of Levo every 6-8 weeks until TSH goes below 1 to achieve the highest FT4 then see where your FT3 lies, nor tested your nutrient levels to see whether they are optimal or whether they need addressing, then you're not giving Levo a chance.

Sure, some people need T3 but the greater majority of hypo patients are fine on Levo.

RedApple profile image
RedAppleAdministrator in reply to

thydroid, "which I believe is due to TSH suppression (further suppressing conversion)."

By your own admission you have not had any thyroid labs done since taking levothyroxine. So how do you know your TSH is suppressed? You are your own worst enemy at the moment. Long term knowledgeable members here are fully aware that lab numbers aren't the whole story. But they do provide a very useful reference guide when taken in conjunction with symptoms.

Always remember that everyone is an individual and some respond well to T4 monotherapy whilst others need to add a little T3, and others may need to switch to desiccated thyroid products. As yet, it's too soon for you to know which one works best for you. T4 monotherapy is not to be scorned at. It is by far the simplest route to repairing damage done by thyroid disease, so it is in your own interest to give it a fair chance.

in reply to RedApple

Are you willing to share with me your experience with Levothyroxine? I believe that might be more valuable to me than hearing. that I need to try and see. To date I have not heard nor seen success stories with Levothyroxine similar to what I have with combination therapy. On top of that it does not make sense to me after having spent quite a while reading the literature.

The questions I'm most interested in would be:

* Are you on Levothyroxine monotherapy?

* Do you feel healthy?

* Are you working a 100% job?

RedApple profile image
RedAppleAdministrator in reply to

thyrdroid, "spent quite a while reading the literature."

Literature is theory, and frequently written by peple who have no personal experience of thyroid disease and treatments. My own story relates only to me. I repeat, everyone is different. You don't hear from the millions of thyroid patients who are feeling well on T4 only. That's because most of them have no reason to frequent forums, support groups, social media etc. They are feeling fine and getting on with their normal lives.

RedApple profile image
RedAppleAdministrator in reply to RedApple

I will add that we have had members here who have been convinced that they need to add T3, or take desiccated thyroid And they have gone ahead and done so. Only to find after lots of experimenting, that they do actually feel best on T4 only.

helvella profile image
helvellaAdministrator in reply to

Having been around for a while, I have seen quite a number of people who have gone down a route which includes T3 (whether liothyronine or desiccated thyroid or any of the possible combinations), yet have eventually ended up on T4 monotherapy. By choice.

I am on T4 monotherapy and would be unlikely to take T3. Because, in most respects, T4 monotherapy seems to work pretty well for me.

I'll not be so blinkered as to say or imply that there might not be a possibility of some other regime [1] making slight improvements. But the path from T4 monotherapy to something else could be very long and rocky.

For me, it is not a case of finding it difficult to obtain T3, I could get hold of some almost immediately, should I wish. But I consider that the improvements from T4 monotherapy have been good, my lab results are pretty good, and I do not think that any realistically viable regime including T3 is likely to be any better.

I'm not saying that you will find T4 monotherapy the optimum treatment for you. That would be an assumption. Equally, however many you know who are or were unhappily on T4 monotherapy, it appears to be rather an assumption you will react the same.

And it took me a long time to get from starting dose, via a setback when one make of levothyroxine was sub-potent, to my current state.

Where I to be advising myself what I should have done, it would be test more frequently and, by so doing, being more sure about changing dose - though still very, very slowly.

[1] Please note carefully that I mention "other regime" - which might or might not be a T4/T3 combo, T3 monotherapy, or, in the fullness of time, a thyroid mimetic or another member of the thyroid hormone family.

tattybogle profile image
tattybogle in reply to

Does it take you 6-8 weeks to feel the results of an increase in Levo? I'm definitely not up for that.No, you would expect to feel the results much sooner, often within a few day's , as you have already experienced.

The reason for the 6 weeks delay for the blood test is because it can take the TSH (Thyroid Stimulating Hormone ) a long time to rise in response, so an earlier test would be unrepresentative.

The actual hormone levels T4 and T3 will show accurately in the blood more or less straight away , but the medical profession are stuck on the idea of trying to dose thyroid hormone by just looking at the TSH, which is a shame.

It is very common when starting Levothyroxine for you to feel nothing for a few days , then quite a bit better for a few weeks , and then less good again.

This simply means that it is time to increase the dose, (they do not start you on the full replacement dose in order to allow the body time to get used to functioning at a faster rate than it has been whilst Hypothyroid)

I had this pattern of better, then not so good again, a couple of time before an increase would fix things for few months . When you're near the right dose, how you feel will stay more stable, and dose adjustments will be smaller and further apart.

Trying to avoid this process by jumping straight to adding T3 will not save you hassle , it will probably lead to more hassle in the long run.

Get up to a full replacement dose of Levothyroxine and allow time for your body to settle on a new dose . ( i now wait at least 10 weeks before i make a judgement, how i feel can change every week for a while on a new dose, and often slow steady improvements happen when you keep dose stable for long enough).

Usual dose to end up on is between 75 -125 , but everyone is different, i ended up on 150 for many years, and i'm now on 112.5.

You may well not need to bother with adding T3, and even if you do, finding the right dose of T3 to add to Levo is just as time consuming, and much more of a pain to maintain a supply and constantly argue with Doctors about your TSH level every time you see them about anything.

in reply to tattybogle

Thank you for your comments. The plus side of T3 is that it kicks in immediately and you do not have to wait as long to assess the situation. Are you feeling uncomfortable/anxious/rapid heartbeat? Try decreasing the dose.

I am open to the possibility of Levothyroxine working to an extent, but I believe the way I felt on the first week of Levothyroxine was due to higher levels of T3 that were then suppressed as TSH was suppressed by the added T4 hormone.

I posted somewhere up above about the diurnal rhythm of TSH, FT4 and FT3 in euthyroid patients. FT4 was relatively constant. TSH and FT3 went through peaks and valleys, FT3 followed TSH with a roughly 90 minute delay. As if TSH was to an extent driving the FT4 -> FT3 conversion. It is then not unthinkable that by suppressing TSH you are subsequently suppressing this conversion.

There exists a study on depressed people taking mirtazapine. The ones who felt the best at the end of the study saw the greatest decreases in FT4 and increases in FT3. Those who had the highest FT4 at the beginning were the least likely to see any benefits. Yet patients on Levothyroxine often have to stay very high on the FT4 range to feel "good".

I just feel like this thing is a bit off. I recently read a thread posted by a woman I know, asking others if they too felt way too tired on Levothyroxine, I saw so many comments from women having been on it for years and not seeing any improvements, not believing that there could be any improvements.

I believe their doctors should be ashamed of themselves for not offering them a trial of T3, and owe them an apology. Estradiol is also known to suppress FT4 -> FT3 conversion so this should be even harder on women. Likewise just anecdotally all the hypothyroid people I know in real life are fatigued, unhappy and overweight.

in reply to tattybogle

Having said that.. I might try another Levothyroxine increase. But I will probably continue looking for a source of T3.

tattybogle profile image
tattybogle in reply to

You're quite right to be dubious about the effectiveness of t4 alone , may here do feel better when they add something different...But ........and it's a 'big' but..... Your post implies they you have only just started Levo .

Given that hypothyroidism will usually require lifelong hormone replacement, you'd be daft to throw out the possibility of fixing it in the simplest and cheapest way possible. Levo does work for some , my auntie was fine on it albiet on a larger dose than you'd be offered without a fight nowadays, i think she took 200mcg .

Once you start adding T3 to Levo you will have a constant argument with every doctor you see for everything whether thyroid related or not, because your TSH will be lower than on Levo, and they'll want to reduce you levo, and they won't use their brain about anything else you say , they'll just blame absolutely everything on theT3.

If you read thyroid forums /chat sites etc on the internet , you will be getting a very skewed picture of life on Levo , because the ones who are OK on it don't go on thyroid sites.

I'm not saying you definitely won't need T3 or NDT in the end, but if you get there knowing for certain that you tried t4 alone properly first, it will mean it's easier for you to trust yourself in the face of a lifetime of doctors telling you your heart is at risk from what you're doing.

And however sure of yourself you feel right now , trust me , it does get into your head that maybe they're right and you're wrong when you feel a funny heart beat at night and start thinking about life after a stroke .

in reply to tattybogle

Thanks, and yeah no doubt I would never get 200mcg. If life wants to give me a stroke or a heart attack then all I ask is that it kills me. :)

But thank you, you're right, at the very least I will try some increases in Levothyroxine. However I will never accept any form of disability, I want some energy back in my life.

tattybogle profile image
tattybogle in reply to

Be careful what you wish for .........'life' doesn't care what you ask for....... my aforementioned auntie had a very full and energetic life and was farming sheep into her 70's........ then they kept insisting her levo was lowered and she was less good for a few years but still managing, and then coincidentally or not she had a stroke which i wish had killed her but it just left her to rot in bed for 5 years..... not a good way to go , trust me.

I remember being very ,very angry at someone who told me years ago that i was 'disabled' now , because of hypothyroidism,........ but if i'd accepted the truth in it , i might have take hypothyroidism more seriously ,(despite Doctors implying it was a 'non problem') and put more effort into finding the best treatment and doing other nutritonal /lifestyle improvements.

You thyroid controls Everything, and it goes wrong slowly , and your cells work less well. Getting well once you have taken over the role of your natural regulation system (Hypothalamus / pituitary/TSH) to keep things in balance and respond to varying demands is a complicated business, and will never be as good as what the body could do for itself, no matter what you take.

in reply to tattybogle

I did not mean to take the stroke lightly. What I mean is life without improvements means nothing. Let me have more energy or death.

Of course this is complicated, and I have this problem due to autoimmunity. All I do there is I eat gluten free and try to eat healthy. Other treatments for it aren't very appealing excepting thyroid hormone. I've felt that there can be immense improvements there but at first glance Levothyroxine doesn't seem so promising.

I'm sorry to hear about your aunt. Life isn't fair sometimes.

tattybogle profile image
tattybogle in reply to

It's Ok , i know you weren't taking it lightly .And i do appreciate you've looked into this quite a lot already . I guess we all just want to make sure you've properly considered the 'Hare and the Tortoise' aspect of this .

(the tortoise wins the race in the end , in case you are not familiar with the story)

.....lets suppose that you go too quickly and are taking some Levo and some T3 and feel amazing for a few weeks/months, but then feel rubbish again , and no matter what you try adjusting you can't find stability......( this is a very, very common tale on here)

How much more annoying would it be at that point to have to go all the way back to where you are now and try increasing Levo in Slow Steady Small increments to see if 100, or 112.5 , or 125 , or 137.5 , or 150 would have worked anyway ?

I do agree with you , that there is a point in treatment where Doctors should say , right , if you're still not back to yourself , let's try adding a tiny amount of T3 to Levo. And it should not be so blummin difficult to get prescribed it, it should just be common sense.

But i see so many post on here where people have got themselves in a right mess by not having the patience to move steadily , wait patiently, and observe properly.

And by the time they need help here , their Doctors have already got them down as someone who is determined to get T3 for the 'buzz' and they'll never listen to a word you say again.

in reply to SeasideSusie

Though I would be curious to hear your own experience with increasing Levothyroxine and seeing the benefits?

SeasideSusie profile image
SeasideSusieAdministrator in reply to

thydroid

It usually takes 8 weeks for my levels to stabilise and test results to reflect this. I have always found dose increases have no short term effect and it takes me quite a while to realise I feel an improvement. Lowering dose has an effect more quickly.

SlowDragon profile image
SlowDragonAdministrator in reply to

Personally I find it takes 8-10 weeks to see initial benefits....and typically further improvements over 16-24 weeks

So I will test at 8 weeks, then again at 16-20 weeks. Alway TSH, Ft4 and Ft3 together.

Many people find different brands of levothyroxine (and T3) are not interchangeable.

All four vitamins must be maintained at optimal levels. This frequently requires extensive supplements.

Autoimmune thyroid disease also called Hashimoto’s is as much about optimal vitamin levels as it is optimal thyroid levels

SlowDragon profile image
SlowDragonAdministrator

Far too soon to be considering adding T3

Bloods should be retested 6-8 weeks after each dose increase in levothyroxine

Unless extremely petite likely to need further increases in levothyroxine (and bloods retested 6-8 weeks after EACH dose increase)

Guidelines on dose levothyroxine by weight is 1.6mcg levothyroxine per kilo of your weight

Absolutely essential to regularly retest vitamin D, folate, ferritin and B12

These all need to be OPTIMAL before even considering adding T3

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

High thyroid antibodies confirms autoimmune thyroid disease

Vast majority of Hashimoto’s patients find strictly gluten free diet helps or is essential.. .....and should be trialed BEFORE considering adding T3 as well

All thyroid hormones take weeks/months to settle after any dose changes

Wether on just levothyroxine or levothyroxine plus T3......we ALWAYS need to wait 6-8 weeks before retesting

From your comments and lack of blood results it’s impossible for responsible members to supply the information you think need. Two very knowledgeable and helpful admins have kindly taken time to respond to your request. You absolutely need to get regular blood tests, post the results on here and then members will be able to understand your situation and offer specific advice.

Both SeasideSusie and RedApple have explained things to you.

Hypothyroidism is for life. It takes a considerable time to find the perfect dose. Patience is needed rushing into T3 could do far more harm than good.

in reply to Miffie

How are you feeling on T4 monotherapy?

Miffie profile image
Miffie in reply to

I don’t presently take levo, I have sixty odd years of hypothyroidism and varying medication behind me. My case is possibly a little different to yours?Maybe not as you don’t have any profile info. I’d be interested in sharing if you too had you thyroid destroyed by radiation in the early 1950s. Everything was so different then wasn’t it? From your post I thought you were newly diagnosed. So apologies if I get that all wrong.

I was fine to start with, going back over 20 years. Was 56 then. Got up to 150mcg. Then down to 125mcg. Was OK for around five years. Then started to put on weight and became v stressed when husband started on downward spiral with no conclusive diagnosis. Kept taking tablets and put up with male doctor's satisfaction with TSH levels (started with knowledgeable female who had the nerve to retire!). Gradually got more muzzy~headed and lacking energy. More weight gain. Referred to endo who just followed the GP's thoughts. Then v strong bones turned out to be osteoporotic and even more despairing. In January 2018, saw another endo who said I needed T3 but couldn't prescribe it in UK and that I'd have to source from Germany or similar. So I did. Gradually replaced levo with T3. Gradually increased t3 and reduced levo. Gradually felt better and better. Now, since earlier this year, feel really good and for the last eight months have been on 75mcg t3 only, despite GP suggesting I put back levo. I haven't.

Ready for final exit from EU, I've sourced t3 in the form of Tiromel (25mcg) at around £11 for 100, without a prescription.

This is all on the suggestion of a very good endo who has, unfortunately, retired.

For safety, I'd suggest you do things gradually with GP but if you don't start to feel better on levo, ask to see an endo who specialises in thyroid. List available from Thyroid UK.

Over the two years, without trying, I've lost 1.5 stones of the nearly three I put on on top of eight stone. Now need to remove a stone to 8.5 because I think I could look too skinny at 76, although only 5'2".

Unfortunately, you can't feel really well quickly, having gradually got ill. And I'm not convinced that being on levo for so long hasn't stopped my body converting t4 to t3, so that's why I'm now on just t3. It would be lovely to skip all the in between but the professionals on here will probably tell you it's not safe. And, don't forget, it can harm your heart!

Good luck. Lynn

in reply to Kandahar

Thanks Lynn, this was really reassuring to hear. Did you buy the Tiromel over the counter in the EU?

Kandahar profile image
Kandahar in reply to

On line without prescription. Comes from Hong Kong so no Brexit effects.

👍

That's good. You seem quite content, are you on monotherapy?

I do not have to accept anything.

I'm sorry to hear that, life isn't always fair. I'm glad you're able to make the best of what you have.

I said this on a different thread but why on earth would you commit yourself to a very expensive, potential very unreliable method of self treating without even giving the cheapest, easiest, method a try first? If you can get it on prescription, more the better!

There is so much knowledge here, if you choose to hear it.

I have been on T4 since June. It's been up and down and just last week I posted here in a moment of melancholy but I am almost back to my old self. I am doing very well on only T4, I believe I will make a full recovery on T4 only.

You're going to find people are reluctant to share their stories with you when you're being so squirrelly about your own.

in reply to

Good luck with your recovery, sounds bumpy so far.

in reply to

😂 Goodness, if that's what you took from that you're being astonishingly single minded about this.

Best of luck finding the silver bullet. Do report back if you find it! :)

in reply to

It is, I haven't to date heard that Levothyroxine success story. Your reply only added to the batch of the contrary.

in reply to

I mean, sure. When I wrote "I am doing very well on only T4, I believe I will make a full recovery on T4 only." I absolutely meant, it's terrible on T4 and I will never be well again.

😂

Kandahar profile image
Kandahar in reply to

What do you mean ‘it’s terrible on t4 and I’ll never be well again’ but also saying ‘I believe I will make a full recovery on t4 only’? I’m confused!

in reply to Kandahar

I was being sarcastic because OP was being deliberately obtuse.

To be clear: I feel well and believe I will make a full recovery on just T4.

in reply to

This is a terrible disease that will eat you alive if you can't find a regime that works for you.

I sincerely hope you find what works for you.

in reply to

Likewise. All my best to you.

tattybogle profile image
tattybogle in reply to

, I haven't to date heard that Levothyroxine success story.....well you won't hear many on here , (or on the internet anywhere),Noel Gallagher(or was it Liam?) is hypothyroid and he's not on here.!

This is a site that people with problems on levo find to try and get help. But there are many people on here who have siblings/relatives who do fine on Leo and cant' see what all the fuss is about.

The usually quoted estimates are that there are approx 15% of hypothyroidism patients who do not do well on Levo... personally i wouldn't be surprised if it is a lot more than that, because many who still struggle will be told by their GP that your thyroid problem is 'fixed ' now , so anything wrong is 'something else'..... but even taking that into account, i think it is likely that a majority of hypothyroid patients do perfectly well once on full stable dose of Levo.

And i know 2 of them... they both look at me like i've got two heads if i mention that i'm not fixed with Levo.

in reply to tattybogle

A lot of people accept their fate. I recently spoke to a woman I know who has hpothyroidism and asked her if she was on T3. She said no. She was on Levo and she is on 100% disability. She is always tired, every day. She went on to post in a facebook group full of hypo people (I would argue, maybe on a whole that would be a group with less problems than the people on here). All the responses were the same. "I don't think I'll ever be fixed" "Been on levo for years, never noticed any difference" with not a single one saying "Oh I went on Levo and I'm so much better."

Do note that the only reply on this thread that was wholly positive was the one from the person using T3.

Edit: I'm not saying T3 is a silver bullet for everything everywhere. But it's worth a shot.

tattybogle profile image
tattybogle in reply to

And a lot of people don't want to hear advice when they've already made their mind up.

You asked for a doctor or clinic who would prescribe T3 ... we've all been trying to answer that question in a responsible way...... the answer is no one responsible will prescribe you T3 until you have been on a reasonable dose of Levo for long enough to at least get a blood test done.

in reply to tattybogle

You're correct, I don't want to hear it, and my mind will not change. In this thread I've had replies from several people, all seem not entirely well on Levothyroxine monotherapy. Then one person on T3 chimes in and they're very satisfied with their response.

I've likewise stated that I had a very positive response in the beginning which faded. This likely correlates with TSH suppression. It's a common story with testosterone replacement as well. However it is not a 1:1 scenario as with testosterone you do not have the T4 -> T3 complication.

So keep pushing Levothyroxine monotherapy if you like - if you're happy with it I'm happy for you. And all of the other ones as well. It is not the answer I'm looking for and I will continue looking to get T3 prescribed.

tattybogle profile image
tattybogle in reply to

None of the answers here are pushing Levo monotherapy.... they are all pushing steady progression , and careful monitoring of symptoms combined with blood test results , and staying on a dose long enough to know the results before rushing on to a higher dose or a different very potent hormone. To suggest anything else would not be wise. Many people here are prescribed T3 , no one is against it.

"Do it carefully or you'll end up worse off and taking longer about it" is the message you seem unwilling to hear.

I've likewise stated that I had a very positive response in the beginning which faded. This likely correlates with TSH suppression.

Well, you wouldn't know if 75mcg of Levo suppressed your TSH , because you've not tested it , but in my experience , it would be unusual for TSH to fall below 1 on that amount of Levo

in reply to tattybogle

Just found out I'm not alone in the world with this view:

"Initial improvement followed by decline

Dr Blanchard observed that some patients improved on thyroxin and then worsened. He describes a "sweet spot" of optimal levels of T4. He believes the reason for this is that TSH is partly responsible for converting T4 to T3 - so if levels of these hormones are too high, TSH is switched off and with that comes a switching off of T4 to T3 conversion. T3 is the day hormone that fires us up and because T4 is slow acting there may be a delay in noticing this "switch off" of T4 converting to T3 and this can be clinically very confusing."

Levothyroxine monotherapy is indeed confusing.

Kandahar profile image
Kandahar in reply to

I did get better on levo for a number

Of years but not longterm. Did get depressed and put up with it for while because busy trying to find solution to husband’s problems. Told couldn’t so restarted fighting for

Myself.

Can understand people who put up with their bad lot. So defeatist! I’m not

like that. Also, like you, I like to plan for

all eventualities and find out my options even if I don’t need them now.

Hope you find an increase in levo will do

It for you. Come back to me and I hope that by then I’ll still know a reliable and reasonably-priced source of t3. Don’t know what I’ll do if that happens. But will sort that when I think it looks likely, just as I did in the run up toBrexit.

Good luck! Lynn

in reply to Kandahar

Thanks Lynn!

I agree it is much too common that people accept their fate. I know so many in real life who are depressed, overweight and fatigued to a degree where they can't do much of anything. Yet their doctor tells them they're fine because their numbers look good.

I finally got some T3 and I'm already feeling fantastic as I thought I would!

I wish you all the best.

tattybogle profile image
tattybogle in reply to

An astonishingly quick result........ considering 24 hrs ago you said you were still looking to get hold of any.I'd say be careful , but you probably wouldn't listen.

in reply to tattybogle

You're right again, but I still wish you the best and hope you find what works for you. My (unwanted) advise to you would be to be unafraid to explore new options and to not let others deter you from doing so.

tattybogle profile image
tattybogle in reply to

I'm careful who i take advice from, and your report of feeling instantaneously fantastic on magically appearing T3, rather makes me doubt your sanity.

in reply to tattybogle

That's your choice. Your story of years of not really being well isn't that convincing either. Why would I want to replicate those results?

tattybogle profile image
tattybogle in reply to

My story and my blood test results are visible , honest and available for all to see and make their own mind up about. Yours are not.

I did not suggest you replicate my journey, nor did i try and put you off trying T3 in a a way which is likely to help you.

I and everyone else here suggest you approach thyroid hormone replacement, whatever you use with, care and responsibility.

Your lack of open ness about what you're doing/taking does not so far indicate that you are being careful or responsible.

in reply to tattybogle

And please, no further input from you or people who are generally unsatisfied with their health. If you cannot answer the following with a yes, then I do not care what your input is.

* Are you healthy?

* Are you working a 100% job? (This is just to make sure you're not kidding yourself with question #1)

* Are you happy?

If you can then I'll consider your recommendation for T4 monotherapy.

RedApple profile image
RedAppleAdministrator in reply to

thydroid, This is an open support forum. If you're not interested in input from others, then there's no point you being here.I am closing this post to further comment.

I just want to say that I’ve found it invaluable to post my blood results on this forum and have knowledgable and informed forum members respond. Getting my key vitamins optimal and Levothyroxine dose adjusted upwards was only achieved by me listening to the admin team (and other established members) and following their advice. I think this is essential before deciding if T3 may help improve symptoms.

One thing I’ve leaned on my thyroid journey is make any changes slowly and test regularly. I ended up in A and E when my Levo dose was adjusted upwards too quickly and I am now very cautious when changing medication.

I trust the admin team in this forum far more than any medics I have seen.

in reply to Buddy195

Hi Buddy195,

I'm glad to hear that you've gotten your vitamins / Levothyroxine dose optimal. However I stand by my assessment, I do not believe T4 monotherapy is optimal. If you're happy on it, I'm happy for you. If not, don't be afraid to explore other options.

I am exploring other options, but only after getting vitamins optimal and upping my Levothyroxine FIRST!

in reply to Buddy195

Good for you, I applaud you for it. Your approach is just as good if you're happy with it.

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