Optimal range. : Hi guys, If as per the Health... - Thyroid UK

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Optimal range.

Totoro25 profile image
9 Replies

Hi guys,

If as per the Health Unlocked community guidance the optimal TSH for Hypo is around 1.0 mlU/L, why then is there no support for this anywhere for example with Thyroid UK?

They must be aware that there's a big Thyroid knowledge base within the Health Unlocked community.

Everywhere you look on the Internet the recommended TSH range is between 0.4 - 4.0 mlU/L which is always what my GP refers to.

What chance have I got of convincing my doctor if this is set in stone right across the board?

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Totoro25
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9 Replies
Dahliasanddaisies profile image
Dahliasanddaisies

You could try referring to the NICE guidance

'Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.'

So it doesn't give a specific number but you can say you want to trial an increase to see if you can feel better with a slightly lower (but not under range) TSH

nice.org.uk/guidance/ng145

Totoro25 profile image
Totoro25 in reply to Dahliasanddaisies

Thank you for your response it's very much appreciated.

greygoose profile image
greygoose

The problem is, doctors don't understand what ranges are, how they're set nor what they mean. If fact, they have no real idea how to interpret blood test results at all. They shouldn't be dosing by the TSH, anyway, but the whole thing is so messed up none of they have a clue what they're doing.

I think it often helps if you tell doctors that you understand the 'risks' of a low TSH (there aren't any:) and you're will to take full responsibility. A lot of people do that. After all, your doctor is there to advise you, not to dictate to you, and there's no law that says you have to do what he advises. And if that doesn't work, buy your own levo and give yourself a rise. :)

Totoro25 profile image
Totoro25 in reply to greygoose

Thank you for your response it's very much appreciated.

greygoose profile image
greygoose in reply to Totoro25

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator

Link explaining TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

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

bnf.nice.org.uk/drugs/levot...

Some people need a bit less than guidelines, some a bit more

Previous private test results show you have plenty of room to increase your dose

Request “trial” increase in Levo from GP

If they refuse then request referral to endocrinologist of your choice

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email there’s a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

Totoro25 profile image
Totoro25

Thank you for your response it's very much appreciated.

tattybogle profile image
tattybogle

There are lots of references to it in various guidelines / guides for GP's : healthunlocked.com/thyroidu.... /my-list-of-references-recommending-gps-keep-tsh-lower-in-range

Sparklingsunshine profile image
Sparklingsunshine

Its the fatal flaw in dosing by TSH, once on replacement hormones then TSH becomes the least important number. But doctors around the world are trained to do it and very many are fixated on it.

What they should do is also look at your frees, but these are getting tested less and less often. And again if they are vaguely within range then that's good enough, apparently.

Unfortunately it sounds as though your GP has just looked at your results, seen your TSH falls somewhere in the range and decided that is good enough. Many of us have had the same experience.

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