NICE guideline draft (June 2019): I was hoping... - Thyroid UK

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NICE guideline draft (June 2019)

HollieBerry profile image
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I was hoping that the ranges might improve once NICE finally updated their guidelines but apparently not šŸ˜’

ā€œEvidence showed no clinically important benefits of maintaining TSH levels in the lower rather than higher end of the normal TSH reference range. Given the need for additional medication to achieve a TSH level in the lower end of the reference range, with the potential for adverse effects and increased cost, the committee concluded that as a starting point TSH levels could be maintained at any point within the reference range.ā€

So this must be why they werenā€™t concerned that my latest TSH was 4.11 and I feel utterly lousy.

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HollieBerry profile image
HollieBerry
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SlowDragon profile image
SlowDragonAdministrator

Most people with Hashimoto's need TSH as near zero as manageable ....and as most primary hypothyroidism is due to Hashimoto's.....the NICE guidelines are hopeless

Only plus side to new guidelines was this

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

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Previous post shows you needed 25mcg dose increase. Did you increase?

healthunlocked.com/thyroidu...

HollieBerry profile image
HollieBerry in reply to SlowDragon

Iā€™ve increased it by 25mcg myself. Not sure how thatā€™s gonna go down?? Iā€™ve done it because I started taking the Yasmin contraceptive pill last week... when I tried this earlier in the year after 6+ weeks I ended up bed ridden for 4 days. Docs didnā€™t test my bloods at the time.. they just diagnosed me with fibro! It was through my own research I realised how the estrogen effects thyroid, stopped the Yasmin and within weeks I recovered. So I know it seems ridiculous to take that same contraception again but Iā€™m hoping to adjust my levo to suit this, hence why Iā€™ve increased now to prevent getting ill... is that a reasonable plan? The reason for continuing with Yasmin is because after 9mths of zero hormonal contraception my monthly mood swings are dangerous. Depression causes suicidal feelings. Iā€™ve logged moods the whole time and the pattern related to menstrual cycle is undeniable. I would love to be hormone free and natural but I obviously need something to stabilise my sex hormones.

I hope Iā€™m doing the right things here? I feel itā€™s trial and error to get the right balance? x

Lora7again profile image
Lora7again

Disgusting! They all need to go back to medical school!

Jazzw profile image
Jazzw

Does it cite which ā€œevidenceā€ they used to come to that conclusion? Cos I havenā€™t seen any...

Jazzw profile image
Jazzw in reply to Jazzw

Hmm. To answer my own question, hereā€™s the longer rationale: nice.org.uk/guidance/ng145/...

Iā€™m not convinced by their definition of ā€œevidenceā€.

Enjoy. Itā€™s awful.

MissGrace profile image
MissGrace

Itā€™s so depressing. They just donā€™t care. Itā€™s all about numbers and theories and b*ll*cks. Why do they want so many ill people?

Donā€™t they understand what may work for the majority may not work for a significant minority - a minority with hopes and dreams and plans who donā€™t have to be stuck in a shadow-life if only a bit more effort was made with their medication and a bit more freedom to medicate sufficiently was the norm.

Itā€™s like we alive in an alternate universe to current medical ā€˜thinkingā€™ (I use that term loosely because if you follow directives without question you arenā€™t thinking at all!)

Sick of reading these b*ll*cks ā€˜back of a fag packetā€™ studies. B*st*rds. šŸ¤øšŸæā€ā™€ļøšŸ„›

RedApple profile image
RedAppleAdministrator in reply to MissGrace

MissGrace Why do they want so many ill people?

Clearly you just don't understand! We're not ill. Their numbers prove it. Anything else is absolutely in our imagination. We're just a bunch of moaning minnies who have nothing better to do than sit around complaining, reading dubious info on the net and posting on dangerous forums.

HollieBerry profile image
HollieBerry in reply to RedApple

Hahaaaa šŸ˜‚

Zephyrbear profile image
Zephyrbear in reply to MissGrace

Why do they want so many Iā€™ll people??? Because weā€™ll be ā€˜oven readyā€™ cash cows once the NHS is sold off to Donald... thatā€™s why!!!

MissGrace profile image
MissGrace in reply to Zephyrbear

That suggests a level of joined up thinking of which I think they are incapable. Lol. šŸ¤øšŸæā€ā™€ļøšŸ„›

diogenes profile image
diogenesRemembering

Well, it's rather easy to understand. The team for N CE have a remit. That is, to study consequences only by TSH and FT4. They apparently are neither aware of, or do not understand that excluding FT3 measurement from studies nullifies the value of such studies. They still cling to the naive idea that therapy is merely a rerun of health (that is if you give enough T4, all will convert it adequately to T3 and all will be well). That it isn't so hasn't yet swum into their myopic sight.

RedApple profile image
RedAppleAdministrator in reply to diogenes

Someone famous once said, ā€œWhat the eye doesn't see and the mind doesn't know, doesn't exist.ā€

I'll reword that to: What the eye doesn't see (FT3), the mind doesn't have to think about, hence the problem won't exist.

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