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

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Optimal range.

Totoro25 profile image
11 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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11 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 toDahliasanddaisies

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 togreygoose

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

greygoose profile image
greygoose in reply toTotoro25

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.

crimple profile image
crimple

Tortoro25, TSH is NOT a thyroid hormone, it comes from the pituitary gland in the brain and “tells” your thyroid to produce the thyroid hormones T4, a storage hormone and T3 the active hormone.

My TSH has stayed at 0.005 for the last 9 years I take 100 mcgm Levo and 15 mcgm Liothyronine. My T4 and T3 levels are about 70% through their ranges. I am not over replaced.

Why medics don’t understand that if you have sufficient hormone circulating ( from thyroid meds) then pituitary won’t send TSH to thyroid, is beyond me. It,s quite logical to me to have a low TSH. Many medics don’t even understand the difference between T4 and T3and the fact that low T3 is the reason for a lot of our problems. Again there is a lack of understanding that many of us are poor converters of T4 to T3.

Medics often only look at TSH and talk about having AFib and osteoporosis if we are below the TSH range. I had AFib before taking T3, only rarely get it now. I had a Dexa bone scan as part of research programme. There is nothing wrong with my bone health. My GPs now accept my low TSH after I told them I prefer a life to just existing!

Totoro25 profile image
Totoro25 in reply tocrimple

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

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