Final dosage

[Dryski]

Why does it appear that most patients end up on 125mcg and get stuck there regardless of weight or lab numbers. Am I at a dead end?

[Jaydee1507 Administrator]

Long time ago when I was first diagnosed and began treatment on Levo, when I got to 125mcgs Levo I was told that I was on a good dose and and this would be 'enough', whatever that was supposed to mean.

It was like some magic number had been achieved and hey presto I should be radiating health and energy. Not.

As thyroid patients we do need to become our own health advocates with GP’s and Endocrinologists. They get little training in how to make us feel well, instead relying on lab numbers on paper. Take some time to read up on your condition, learn and get your confidence up. This will stand you in good stead when discussing your condition and challenging things that  medic say. Take printed medical papers with you evidencing what you are asking for, and also take someone along with you if you feel it would help.

Have you shared your latest results with us, including latest vitamin results - ferritin, folate, B12 & D3?

[Dryski in reply to Jaydee1507]

Thanks for all our responses. I'm a 245lb female ft4 is 1.08 and tsh was 2.06. Most recent I have. I take 50,000 vit d weekly and have for twenty years.

[greygoose]

It's probably that with most people, 125 mcg gets most people to the TSH level that doctors want it to be. In other words, just pure ignorance on the doctor's part.

Being a bolshy sort of person, I pushed and pushed until I got up to 200 mcg. But, when I said I still felt hypo, the doctor told me I couldn't increase my dose any further because that was the largest pill they made! 🤣🤣🤣 (This is in France.) And it never occurred to the measily little squirt that you could take a 200 pill and a 25 pill and swallow them together to give you 225 mcg! And these people run the country and breed. It beggars belief.

[Dryski in reply to greygoose]

Thanks again. I just feel that there should be more to feel better. This condition must keep people running at turtle speed regardless of levothyroxine dose.

[greygoose in reply to Dryski]

And you're perfectly right. Your TSH is too high and your FT4 too low, and they haven't even tested the most important number: the FT3. It's just pure ignorance on their part, and yet they think they know it all because that's what they learnt in med school. It's their education that is wrong, not us! It's not about the TSH. We, the patients, don't give a toss what the TSH is because we know what it does, and - more importantly - what it doesn't do. Doctors don't know any of that. And, that is why so many hypos, like muself, self-treat because we're fed up with being fobbed off and gas-lighted by doctors who know less about it than we do! Personally, I'll never trust a doctor again!

[jgelliss in reply to greygoose]

👍👍👍👍

[Rosebud1955 in reply to greygoose]

GG, what a shame. A grade 3 child would know that if you add 25 to 200 you will end up with 225. Those are the idiots who want to be in charge of our health. No wonder we can’t trust them!

[greygoose in reply to Rosebud1955]

Exactly! But, as you can imagine, I didn't stay with him very long, but found an endo that would prescribe me T3. He wasn't much better at maths, but at least I got what I wanted.

[Stills in reply to greygoose]

I really wish doctors would read these posts

[greygoose in reply to Stills]

Me too!

[gabkad in reply to greygoose]

Every so often it seems someone like that does interject around here and then disappears.

[greygoose in reply to gabkad]

Remember MrsChips? lol

[helvella Administrator Thyroid UK in reply to Stills]

They might well read these posts. Indeed, it is quite clear that a number do read. There have been numerous references to various patient forums in published papers.

The fact that posts here are, by default, open to access by doctors and researchers is a significant plus for HU. Private facebook groups, forums which require membership, etc., are understandable and probably have their place. And individual posts here can be restricted to members.

But there are HU rules about professionals signing up.

A considerable number of members were signed up as if doctors but, when contacted, ignored requests to clarify their status (qualifications, etc.).

Member names like "doctor_smith" are not, in general, allowed.

[Stills in reply to helvella]

I’m tempted to show some of these posts to my GP if only I could get an appointment .

Given that Drs chosen role is to help the ill they should be reading posts on HU as part of their ongoing g professional development.

[helvella Administrator Thyroid UK in reply to Stills]

Certainly a module on "Understanding patient forums" could be a good thing.

Appreciate why and how patients use forums, the benefits and risks, and that one forum is very different to another. Plus how to advise patients considering the use of forums.

[Stills in reply to helvella]

A very considered response showing admirable restraint 😉

[jgelliss in reply to greygoose]

👏👏👏👏

[SlowDragon Administrator]

We have many people on higher doses of Levo

And many, many more left on ludicrously low doses

Approximately how do you weigh?

Are your vitamins optimal

[Dryski in reply to SlowDragon]

I am female in us, 245lb, free t4 1.08 with range here of 0.76 to 1.46. Tsh of 2.06 with range of 0.36 to 3.74. In range but still exhausted. On vit d of 50,000 weekly.

[SlowDragon Administrator in reply to Dryski]

245lb = 111kg

111kg x 1.6mcg Levo = 175mcg as likely daily dose Levo

Obviously you need Ft3 tested at same time as TSH and Ft4

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

on Levo TSH should always be below 2

Most thyroid patients will have TSH around or below 1 when adequately treated

And Ft4 at least 70% through range

FT4: 1.08 pmol/l (Range 0.76 - 1.46)

Ft4 only 45.71% through range

So you’re in need of 25mcg dose increase

And test folate, ferritin and B12

Is your hypothyroidism autoimmune

Are you on absolutely strictly gluten free diet

If not get coeliac blood test before considering trial

[mrskiki]

I finally got to 150mcg and my FT4 is top of range and TSH lowest, so GPs theory I’m in best of health 🙄

[Sparklingsunshine in reply to mrskiki]

I do hope you are climbing Everest, running marathons and bungee jumping. Its the least you can do 😆

[Charlie-Farley]

Hi Dryski

Links to stuff

The relationship between TSH and dose is not linear and the relationship between you being well and your TSH being in range is not guaranteed either. GPs are routinely undermedicating people because they do not know enough to step outside of the basic guidelines and use the latitude that is ACTUALLY written in.

NICE guidelines on levothyroxine.

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

NICE guidelines on hypothyroidism 

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

The two links above are essential reading for anyone with hypothyroidism, and you will see that there is latitude within the guidelines to work on the symptoms rather than TSH. They have put that there because they know the current paradigm does not work for many people, but they do not have the kahunas to actually say it.

Research treads around egos and long, established careers that have been perpetuating the flawed narrative.

Drs don’t read up to date literature so just presume the guidelines are sufficient and have no idea what goes on in the background- they just follow blindly then get irritated when the patient doesn’t get better and gaslight the patient rather than think this isn’t right? 🤔

I’ve written a pinned post on NICE and NHS guidelines - the useful bits. Just picking them apart so people can see where we can get leverage. Another pinned post by Tattybogle deals with ok for a low TSH.