Have the Nice guidelines changed?

[Molliemoo1]

Have the Nice guidelines for underactive thyroid in pregnancy changed? Can't seem to find the reference to tsh below 2 anymore and the recommendation for how often to be tested in pregnancy?

cks.nice.org.uk/hypothyroid...

[Clutter]

Molliemoo,

The links below recommend TSH 0.4-2.0 for women planning conception.

cks.nice.org.uk/hypothyroid...

cks.nice.org.uk/hypothyroid...

Edit: The recommendations have changed! The pages of recommendations 6 and 7 are now empty

[MidnightBlue in reply to Clutter]

clutter, I can't seem to get the links to work.

[Clutter in reply to MidnightBlue]

MidnightBlue,

I've reposted the links which should work now.

[Molliemoo1 in reply to Clutter]

Hi Clutter, when I click on this link, it gives me a heading of "hypothyroidism" but no content?

[Clutter in reply to Molliemoo1]

Mollimoo1,

They appear to have changed the pages

[humanbean]

It looks to me as if, yes, they have changed. There is a line near the top of the page that says

"Last revised in April 2016"

I am gobsmacked. They seem not to care whether women miscarry or produce kids with problems.

[Molliemoo1]

I really hope I'm wrong. those guidelines got me the treatment I needed.

I wonder when the Tablet trial results will be published

[Molliemoo1 in reply to Molliemoo1]

Hidden misswinky34

[misswinky34 in reply to Molliemoo1]

😮 they have changed- I've got the printout with the old ranges on! Bet my midwife and GP don't know this!!

[humanbean]

The changes that have been made seem to be malicious. What chance does someone have to get pregnant, stay pregnant, and have a healthy child if they have a TSH at the top of the reference range? And of course, if TSH is in the reference range there is a good chance they won't even bother measuring the Free T4, and it goes without saying they won't measure the Free T3.

This makes me so ANGRY!

[Jazzw in reply to humanbean]

It does feel malicious, doesn't it? I wonder whether anyone's queried whether it's a typo? *Who* changed it, I wonder? Maybe a freedom of information request is order. It would be an easy one for them to answer, so should get a response.

[Jazzw in reply to Jazzw]

There is a feedback form here: nice.org.uk/leave-feedback

Might be worth an ask?

[Molliemoo1 in reply to Jazzw]

Very disappointing. I will submit a feedback form tomorrow.

[humanbean in reply to Molliemoo1]

Let us know what response you get.

[misswinky34]

Human bean my GP told me they are only interested in the tsh. I had to really push for t4 result. And like you said they don't test t3 but in the past endo have said t4 is equally as important as it can flag conversion issues.

It's playing with lives.. Literally!

[humanbean in reply to misswinky34]

Sometimes I think one or two of the medical profession might be warming to their thyroid patients. Then something happens, out of the blue, (like this change to the NICE guidelines for example) and I realise I am deluding myself.

[Molliemoo1]

It's a real shame. I was looking for it because a mum to be on a baby board I'm on was asking how frequently she should be tested. Seems to be no guidance on this now. It was a resource that a lot of us used to push our doctors to proper treatment.

[humanbean]

I just looked at another page on the NICE clinical knowledge summaries :

cks.nice.org.uk/hypothyroid...

^^ It's the page for managing people with subclinical hypothyroidism who are not pregnant.

Part way down that page I noticed this (note the bold bit - my bolding) :

Many people with SCH do not need treatment, but if a decision is made to treat, prescribe levothyroxine (LT4).

Do not prescribe combination therapy (LT4 and LT3) in primary care.

Aim (in most people) to reach a stable TSH level in the lower half of the reference range (0.4–2.5 mU/L).

It seems that aiming for the lower half of the reference range is mentioned in the case of subclinical hypothyroidism where the person is not pregnant, but it isn't mentioned in the case of people who have overt hypothyroidism who are not pregnant, or in people who are planning a pregnancy.

Whoever updated this particular subject made a bit of a mess of it.

[Molliemoo1 in reply to humanbean]

Very strange. Changed from 2 to 2.5 as well.

[misswinky34]

Exactly molliemoo without the ammo we will lose the fight. It's dangerous why can't they realise that. No wonder people self medicate and pay for private testing. Well spotted anyway, I wouldn't have known.

[kayaktime]

Oh boy...can't believe the guidelines have changed. That's going to give lots of GPs an out from treating us properly. Utterly ridiculous when the cost of medicine / testing is weighed up against the consequences of bad treatment.

[TupennyRush]

Thyroid UK asked for people to act as Guinea pigs on the new guidance a while ago. I signed up, read it and sent quite a long email to them on the first page edit where they asked for feedback.

Email mentioned t3/ndt and various other items

I haven't been asked to comment on any of the other page changes...

[Molliemoo1 in reply to TupennyRush]

maybe it's worth highlighting to Thyroid UK then to see if they can do anything

[LouiseRoberts in reply to TupennyRush]

We were just advertising it! Not in control of it at all I'm afraid.

[LouiseRoberts]

If you look at the references at the bottom of the CKS page they include the ETA Guidelines which include this:

On the base of published studies, mostly from western countries, either the guidelines sponsored by the American Thyroid Association or by the American Endocrine Society suggested the following reference range: first trimester, 0.1 to 2.5 mU/l; second trimester, 0.2 to 3.0 mU/l; third trimester, 0.3 to 3.0–3.5 mU/l [6, 9, 15–17].

Not sure if this will help to put people's minds at rest a bit? xx

[humanbean in reply to LouiseRoberts]

Thanks for pointing that out Louise. I wonder how many GPs are going to follow up the references though? I looked at the reference titles and I have looked at some of them before - and they are LONG. I can't see GPs bothering to read them even if they look up the documents.

It is also obvious that the clinical knowledge summaries are poorly summarised from the references they quote. When I first realised the change that had been made I wondered if it was malicious. Now I suspect the problem is good old incompetence.

[Molliemoo1 in reply to LouiseRoberts]

Thanks Louise. Unfortunately it was hard enough to get the doctor to acknowledge the original wording, not sure they'll pay much attention to this.

For now, my subclinical hypothyroidism is acknowledged and there is some attempt at keeping my tsh below 2.5 during my pregnancy. My last result was below 2 for the first time.

I achieved this through the support and guidance of people in this forum and the original Nice guidelines. I worry that other women in my situation have one less vital resource in their battle to get treated and monitored. And it really did feel like a battle.

[Ansteynomad]

Bring me the chains and I'll be off to find some railings!

Surely this requires a campaign? The implications for women and children are huge.

[Clutter]

Molliemoo1,

I found I had copied the NICE guidelines before they changed in April 2016. There is a copy pasted in this link healthunlocked.com/thyroidu...