A friend who has been in “discussions” with her GP about how proceed with her treatment has said the guidelines state TSH must be above 10
Now I know that some very silly doctors insist on waiting until levels are above 10 but do NHS guidelines really recommend that and if that’s the case why is the ref range something like 0.35 - 5/5.5
nice guidelines :
(note ~ the pertinent word here is 'consider' .... at the end of the day it's up to the individual GP whether they consider it necessary to treat an individual for hypothyroidism before TSH is over 10)
nice.org.uk/guidance/ng145/...
"1.5 Managing and monitoring subclinical hypothyroidism
Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1
Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2
When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3
Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4
Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment. "
Thank you for pointing that out
These are the words:
Thyroid disease: assessment and management
NICE guideline [NG145] Published: 20 November 2019 Last updated: 12 October 2023
1.5.3 Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH
of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the
recommendations in section 1.4 on follow-up and monitoring of hypothyroidism
1.5.4 Consider a 6-month trial of levothyroxine for adults under 65 with subclinical
hypothyroidism who have:
• a TSH above the reference range but lower than 10 mlU/litre on 2 separate
occasions 3 months apart, and
• symptoms of hypothyroidism.
So, in my view, quite clearly they do NOT say TSH must be over 10
But, even if those parts of the guidance did say "must have TSH over 10", the quote below - which appears in a very similar form across NICE guidance, means that no doctor is forced to wait for TSH to be over 10 if their judgement is the patient needs treatment.
Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful
consideration of the evidence available. When exercising their judgement, professionals
and practitioners are expected to take this guideline fully into account, alongside the
individual needs, preferences and values of their patients or the people using their service.
It is not mandatory to apply the recommendations, and the guideline does not override the
responsibility to make decisions appropriate to the circumstances of the individual, in
consultation with them and their families and carers or guardian.
It sometimes comes across that GPs are unaware of this. Or, despite being aware, feel pressures brought to bear which means they have to ignore it. And that is especially bad if local guidance doesn't have a similar clinical judgement clause. I'd go so far as to suggest it could make that guidance illegal.
But, even if those parts of the guidance did say "must have TSH over 10", the quote below - which appears in a very similar form across NICE guidance, means that no doctor is forced to wait for TSH to be over 10 if their judgement is the patient needs treatment
Her doctor made it sound as though her hands were tied and because she’s afraid of being labelled a hypochondriac she isn’t pushing for a raise of levo despite feeling not quite right still
Thank you, will forward this
'she isn’t pushing for a raise of levo despite feeling not quite right'
So this friend is already on levothyroxine, and her GP is saying her TSH needs to be over ten for an increase in levo dose? What are her current test results?
Friend’s levels were above 9 when a GP prescribed levo. New GP said that normally, because of NICE guidelines, patients shouldn’t receive treatment til levels are 10 and over and that the fact that friend was prescribed at only 9 and it’s now down to 2 something, should be enough and therefore no further increase is required
Will ask for exact numbers but I know she’s on 75 and has been for some months, her current FT4 is between 18 and 19 and of course no FT3
Last GP tested both frees and if memory serves they’d risen nicely and conversion looked reasonable
Will get details
Oh dear! This friend defintely needs to join this forum herself! As you're fully aware, she will receive lots of valuable help and support here 😊
I say this to her on a regular basis. It falls on deaf ears but out with her last week I have to say I almost lost it when she said she didn’t want to annoy her GP
I’m my own worst enemy though because I encourage her to talk about it but when she doesn’t head advice it irks somewhat. I have vowed to keep out of it but can’t help myself when I see that she’s still some way from being well
She isn’t depressed anymore or spending afternoons slumped on the sofa but she’s still large with various ailments, on top of which she won’t listen to the facts about her longterm use of PPIs or her ferritin and B12 deficiencies. She’s been a vegetarian for 15 years
It is appalling that we have a GP misinterpreting it one way, while a senior endocrinologist in Cardiff is posting the opposite view.
Pete Taylor @DrPeteTaylor
Guidance does allow below 10 before treatment initiation
4:59 PM · Oct 4, 2024
x.com/DrPeteTaylor/status/1...
Perhaps GP training needs to include enhanced comprehension of NICE guidelines? (They do tend to be written such that they are not easy to understand on their own. So this is not actually facetious.)
Most recent. May 24 to follow
Pathology Investigations FREE T3 ongoing sx. on 75mcg
thyroxine. no improvement in fatigue.
Requested By: GLEPA-POR-NHS-
4781350607
Serum free triiodothyronine level 5.1
pmol/L [3.5 - 6.5]
Specimen
Specimen Type: Multiple
Specimen Reference#: 1
Collected: 25 Sep 2024
Received: 25 Sep 2024
Requester Sample ID: 34190513
Provider Sample ID: BS-24269H3608
Pathology Investigations
Thyroid function test LTC Bloods - complete LTC / task sarah
Requested By: GLEA-POR-NHS-
4781350607
Serum TSH level 2.81 mU/L [0.35 - 5.5]
Serum free T4 level 18.0 pmol/L [10.5 - 21.0]
General Information
Service Type: New
Status: Unspecified
Provider Report ID: Batch_90263265
Report Date: 26 Sep 2024
Essential to test vitamin D, folate, B12 and ferritin and maintain GOOD vitamin levels
Two separate tests at least 6-8 weeks apart with TSH over 5……plus symptoms……and especially if high thyroid antibodies
GP could/should offer trial on Levo
Starting levothyroxine - flow chart
gps.northcentrallondonccg.n...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
I’ve forwarded the links to her but they’ll likely remain unread
I’ve read the first and can’t find anything that would relate specifically to her (unless I’ve missed something) and will read the second one later
Thank you SlowDragon
When taking levothyroxine TSH should be kept LOW in range
Get her to join the forum
Guidelines of dose Levo by weight
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...
nhs.uk/medicines/levothyrox...
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
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).
Most important results are ALWAYS Ft4 and Ft3 and symptoms
As a vegetarian and on PPI she will need to work hard and continuously to maintain GOOD vitamin levels
Low vitamins tend to lower TSH
Essential to maintain good vitamin levels
Vitamin D at least over 80nmol
Serum B12 at least over 500
Active B12 at least over 70
Folate at least in top third of range
Ferritin at least over 70
Thanks to you and others on the forum I’ve repeatedly told her all of this and more and to be fair, with lots of nudges and support she’s managed a degree of self advocacy but I think she’s run out of steam and because she won’t join the forum or read much because she thinks she won’t understand any of it, she lacks the confidence to dig her heels in and stand her ground. As soon as GP exerts authority friend backs down
I’ve offered to accompany her but that was declined. I myself am a bit bored with repeating myself but I posted this in an effort to illustrate that the guidelines have many nuances and are just that, guidelines for a GP to intelligently interpret and apply
Thank you again for trying to help
Vegetarians often can’t believe their dietary choices are making/keeping them unwell
I know several long term vegetarians who are B12 deficient and severely anaemic……but refuse to address the issues.
Low iron can increase risk of developing Hashimoto’s
You can only lead a horse to water ……
🐴 💦
I myself was vegetarian for 2-3 years before developing Hashimoto’s…..had terrible diet at the time …..quite likely vitamin deficiencies were contributing factor……plus quitting smoking dramatically increases risk
Lots of us here didn’t realise the impact of lifestyle choices and now have to live with the damage. The important thing is to try to change bad habits and maintain good ones. Sounds as though you have and have and also have come a long way. Admirable and is what many of us are striving for
For myself, strictly gluten free, dairy free and soya free are essential.
Plus significant daily vitamin supplementation
And very fine tuning of Levo and T3
And ALWAYS same brand lactose free Levo and T3 at each prescription
Various symptoms will have been addressed and improved with your lifestyle changes, do feel as though any damage has been reversed
Ppi like Omeprazole will lower vitamin levels even further
gov.uk/drug-safety-update/p...
webmd.com/heartburn-gerd/ne...
pharmacytimes.com/publicati...
PPI and increased risk T2 diabetes
gut.bmj.com/content/early/2...
Iron Deficiency and PPI
medpagetoday.com/resource-c...
futurity.org/anemia-proton-...
onlinelibrary.wiley.com/doi...
sciencedirect.com/science/a...
She swears blind she has high acid levels. Like you say, you can take a horse to water - in this case dragged - so after this effort I’ll stop nagging her. Poor woman must dread seeing me 🙂
tattybogle
helvella
RedApple
SlowDragon
Would you mind mentioning, and anything else you can think of, she has a long way to go before getting to the lowest point. In fact, if my calculation is right at 2.81 she’s roughly 8x higher than the lowest point. I’m hoping saying this will illustrate to her she has a strong point/case for an increase and will galvanise her into fighting for what she needs
This is rather cynical of me but her original GP agreed to test FT3, this new one wouldn’t. Could it be that some doctors, for whatever reason, don’t even want to know what FT3 levels are because the alternative is that they’re ignorant to the importance of it and that’s scarier to me
GP fail - ignoring NICE guidelines 
Liothyronin guidelines to Endos
NHS Guidelines for TSH when on Levo
GP appointment - NHS or NICE guidelines? Sources for TSH info?
Levo Brands/NICE guidelines
