NICE guidelines subclinical hypothyroidism - Thyroid UK

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NICE guidelines subclinical hypothyroidism

richard123 profile image
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It is recognized, however, that some people with TSH levels between 4.5 mU/L and 10 mU/L have symptoms compatible with hypothyroidism [Surks et al, 2004]. Therefore, clinicians and patients may decide on a trial of levothyroxine while monitoring for an improvement in symptoms.

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richard123 profile image
richard123
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shaws profile image
shawsAdministrator

That's what is says but not what they do. Most will wait till TSH is 10 and by that time patients can be suffering quite badly and sometimes TSH never reaches 10. Patients are also told it's not hypo - bloods are 'in range' and doctors haven't a clue what a clinical symptom is but will give something other than thyroid hormones and so the saga continues.

Members have also taken a research paper to GP but it is ignored.

richard123 profile image
richard123 in reply to shaws

My gp says 5.9 is ok but it's highlighted as out of range over 4.5. So the confusion is it's out of range but that's fine, why not set range higher if it's ok to have a tsh of up to 10 as it's so confusing or misleading to patients

joyce59 profile image
joyce59 in reply to richard123

my TSH was 9.53 in 2013 and i wasnt even told then i was sub clinical so i put the symptoms down to the menopause. i was only told about the thyroid problem during a blood test on 10/2/2014.

shaws profile image
shawsAdministrator in reply to richard123

In the USA they lowered their range to around 3. Why is UK sticking to 10? This is a paper by one of Thyriduk's Advisers which may interest you:

thyroiduk.org.uk/tuk/thyroi...

and

raypeat.com/articles/articl...

ann_g_k profile image
ann_g_k in reply to shaws

Hi Shaws, I read only a couple of days ago that the US upper limit is 4.5 and that was from the recently updated guidelines so I'm very confused. Unfortunately I can't remember how I found the document but will see if I can trace it and will send the URL.

shaws profile image
shawsAdministrator in reply to ann_g_k

I believe you may be right and these are two excerpts. First says, at most labs:-

1. Thyroid Stimulating Hormone (TSH) - Start with TSH. This measures a pituitary hormone that responds to changes in thyroid blood levels, and is a key test for many doctors. At most labs in the U.S., the reference range is from around 0.5 to 5.5.

2.

Updated December 04, 2014.

(Download a PDF copy of this article to print for your files, or to give a copy to your doctor )

These findings led to the recommendation in January 2003 by the American Association of Clinical Endocrinologists (AACE) that doctors "consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0. AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now."

thyroid.about.com/od/gettes...

HarryE profile image
HarryE

My TSH only ever tested at a maximum of 4 & I was so incapacitated I was off work for 4 months! Subclinical my a%#@!

Spareribs profile image
Spareribs

Mine was over 5 and with only half a thyroid - 'sub-clinical' for at least 4 years. I did ask for a trial - no we don't do that, even 'tho antibodies raised too.

Finally TSH tested at 19.79 & given a prescription before Xmas - 25mcg - feeling rubbish(er).

Nickinoo1 profile image
Nickinoo1 in reply to Spareribs

Goodness 25mcg isn't going to do a lot! No wonder you feel rubbisher!

Got my PT booked for next week. Can you tell me how long after your PT you got that TSH?

I had awful symptoms and crashed last month and TSH only 2.9. Have had as high as 5.4 but absolutely no treatment. To get to 10 i would be on my knees!

Spareribs profile image
Spareribs in reply to Nickinoo1

No it's not! - my thinking is it's just stopping the small amount (if any) that was being produced. Haven't seen the GP yet (appointment this week) I'm dreading if they 'treat by numbers' - but I do have NDT in case :D

TSH 1.6 before op - 2.5 after, then 5.24 6 months after op, I was referred back for 6 monthly check-ups (TSH always over 3.7) then supplemented Vit D & had TSH of 1.6 so was discharged.

Good luck with the op - take your own soft food (& water!) - I would have got one of those triangular pillows if I'd realised it was better to sleep upright for a few nights. J x

Nickinoo1 profile image
Nickinoo1 in reply to Spareribs

Thanks. :)

Oh that's a good idea. I have one of those so will use it. Got to ask was it because of being sore or breathing - just so I know :)

I am now on Thyroid-s week 3 and no hesitation to go that route. I have a life to lead and it seems to be helping.

Soup is in the cupboard along with cold drinks and ice cream. Penalty is washing up for the year for those who touch them before my op.

Spareribs profile image
Spareribs in reply to Nickinoo1

I was starving after the op (waited all day & was last) but couldn't manage toast as a bit sore & no water to be found! Also just as well I took my own paracetamol - as didn't see a doc for meds 'til 2am (co-codomol).

I think it was mostly my neck just felt uncomfortable when lying down, scrunched up, but can't really remember!

Why are you having a partial thyroidectomy? (apologies if you said previously).

Nickinoo1 profile image
Nickinoo1 in reply to Spareribs

I have a nodule 3cm x 2.77cm. My sternohyoid muscle is now distended down the front of my neck and my vocal chords not working properly - apparently all unconnected but all appeared this past 5 months.

I had an inconclusive FNA and core biopsy also the same apparently.

Consultant said surgery within 8 weeks and two days after seeing him get a call to say urgent op next Friday. Pre op Monday. Last consultant appointment I was fine and issues with speech/ swallowing all in my head. Go figure! :)

Will add paracetamol to my list.

Spareribs profile image
Spareribs in reply to Nickinoo1

or something stronger!

Well I didn't realise I could feel the lump when swallowing 'til it went, my voice has been thin since, wouldn't be surprised if a lump would displace muscle - makes sense when looking at whole picture.

You don't think it's reduced after taking meds? Maybe not if a single nodule - in hindsight I would have liked to have tried, but mine was 'dodgy'. I have seen reports of multinodular goitres reducing, as a goitre can be an attempt to produce more hormone.

Don't forget to tell the consultant it wasn't in your head but in your neck!

Nickinoo1 profile image
Nickinoo1 in reply to Spareribs

Edit: Ok that posted well lol.

Thanks for the tips we shall see what this week brings. :)

keysgirls profile image
keysgirls

Hi, my tsh is 4.55 and ft3 is 4 Ft4 is 11 I have joint pain, muscle pain dry/course hair, brain fog. Everything, I feel like crap! I Have only half of thyroid due to 2cm nodule, then followed by papillary microcarcinoma. Contain to thyroid so did not need to remove other side. Ever since surgery(Sept.21) I have felt awful! My tsh continues to go up and T4 is going down. I am borderline. Even the American base hospital tells me I am in normal range. ITs so frustrating and maddening that I feel like crap! I work parttime and have 3 girls. I just want to feel better again! BEginning to feel like that will never happen. US has same issues its not just here. I want to find a thyroid specialist to go too. I am afraid that my ins won't pay and it will be left up to me. At this point I feel so bad i just may do it. Sorry, I know you all are in the same boat.

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