NHS Guidelines for TSH when on Levo

[medwards]

Hi

I have seen a few post here that say that when on Levothyroxine, NHS guidelines say that the aim is to get TSH below 1 (or at least below 2). I can’t find these guidelines. Can someone please provide evidence for this? Thanks.

[helvella Administrator Thyroid UK]

The full NICE guidelines are readily available here:

nice.org.uk/guidance/ng145

I suggest you have a read - NHS guidelines shouldn't be substantially different wherever they come from.

[SlowDragon Administrator in reply to helvella]

There's no mention at all of where TSH results should be on any NICE guidelines...other than "within range"

[helvella Administrator Thyroid UK in reply to SlowDragon]

I was primarily answering this request: I can’t find these guidelines.

Within those, this is what they say:

The committee discussed how people and healthcare professionals adjust the dose of levothyroxine in response to thyroid symptoms. The committee agreed that there may be some benefit to some people of changes in levothyroxine dose even when their TSH is in the reference range, as the reference range is based on average population values. However they also noted that the non-specific nature of thyroid symptoms may make it easy to misattribute other symptoms to thyroid disease which will not respond to levothyroxine dose changes.

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

They also recommend starting dosing at 1.6 micrograms per kilogram (or thereabouts - depending on tablet dosages/weight) which will usually result in a TSH at the low end. (I take significantly less than that and my TSH is at the bottom of my local lab's TSH range.) So there is an implicit agreement that TSH is acceptable at the low end of range whilst the statement I quoted, on its own, seems to give little or no such guidance. Nonetheless it allows levothyroxine to be increased to reach a TSH at the bottom of the range.

I believe that these NICE guidelines currently probably trump local guidelines - most of which will be older and developed in a less critical environment. That is, however much we might disagree with these guidelines, we can accept that a significant amount of work went into them. But they are not suited to snippet quoting (notwithstanding that is what I have done!) hence better for the original poster to see the full NG145 guidance.

[SlowDragon Administrator in reply to helvella]

This link says TSH under 2.5

gp-update.co.uk/SM4/Mutable...

“Treatment was less aggressive than that recommended in the UK, so it is possible that the results may be different if standard UK practice is followed (UK guidance suggests aiming for a TSH of 0.5–2.5, whereas these trials aimed for a TSH <3.7).”

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine and FT4 near top of range

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine if patients continue to have symptoms at higher levels

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

[medwards in reply to SlowDragon]

Thanks for this; this is exactly what I’ve been looking for. My GP was refusing to treat me but begrudgingly agreed when TSH went to 6.5 (T4 15). They put me on low dose of 25ug Levo for 3 months. I felt better at first then not so much & asked to be re-tested. TSH was down to 3.4 (T4 18) & they have refused to increase dose as my readings are now ‘normal’.

I did mention that ‘surely, on medication the aim should be to get my TSH below 2’ but the GP just smiled at me & told me my levels were in the normal range.

I will take a copy of this next time.

Thanks.

[pennyannie]

Hello Medwards

I believe that the THS test originated to be used as a diagnostic tool to establish if the patient has a thyroid health problem.

Once on any thyroid hormone replacement the TSH test, looked at in isolation, is of little value, and this seems especially true of people with an autoimmune thyroid health issue, and or no thyroid production, through the medical intervention of surgery or RAI ablation.

Sadly it seems many patients are now dosed and monitored on just a TSH blood test result. I know this is what happened to me and that I had to pay the NHS laboratory to extend my yearly thyroid blood test to cover both T3 and T4. The result showed an in range TSH but with a T3 at 25% through the range compared to a T4 at 80% through the range.

This therefore showed that I wasn't converting to T4 into T3 and why I was dealing with such debilitating symptoms, including reduced cognitive functions.

This result also allowed me a dose increase, that was refused prior to the T3 and T4 result, and a referral to endocrinology.

By the time my endo appointment came through, my TSH had become suppressed but I felt so much better. However I was refused a trial of T3 owing to the suppressed TSH.

I now self medicate, have a suppressed TSH and am so much better and not housebound.

I am now without the disabling symptoms that being dosed and monitored on a TSH blood test result and being kept in range caused me.

I'm with Graves Disease and had RAI thyroid ablation in 2005 and became very unwell some 8 years later, and I now manage lingering Graves, thyroid eye disease and hypothyroidism.

[SlowDragon Administrator]

And there’s this ......proof that majority of population have TSH between 1-2

Median TSH graph

healthunlocked.com/thyroidu...

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