Gp and NICE

[Mividauk2]

I had been told they never received my email with all the info I got from here the links to GP Notebook etc.

So which part of the NICE guidelines can I use?

They are totally ignoring my symptoms, they don't think blood test need any action to be taken.

I will re send the email and I do want to add some NICE guidelines that support my request to go up 25 mg in levothyroxine.

I will also print it all out and take a copy to the surgery.

If this fails I will go to a private endocrinologist because I am not feeling well.

I am aiming to make a complain, the manager is a partner in the surgery. Their google reviews are awful. I need to break off with this surgery forever.

[SlowDragon Administrator]

with TSH over range and only on 75mcg levothyroxine you should automatically get 25mcg dose increase in levothyroxine

Previous post with guidelines

healthunlocked.com/thyroidu...

[Mividauk2 in reply to SlowDragon]

I know that but since November I have been told the test shows I don't need to.

I included in the email all those links you and SeasideSusie shared with me in the previous post.

I want to add something from NICE that supports my request.

As they are obligated to follow NICE guidelines. I have been told.

[SlowDragon Administrator in reply to Mividauk2]

you need to remind them you are on levothyroxine and anyone on levothyroxine should always have TSH below 2

Most people when adequately treated will have TSH around or under 1

Insist on 25mcg dose increase in levothyroxine too 100mcg and bloods retested 6-8 weeks time

Book early morning test, ideally just before 9am and last dose levothyroxine 24 hours before test

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

TSH should be under 2 as an absolute maximum when on levothyroxine 

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

 

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

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

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

[Mividauk2 in reply to SlowDragon]

They will say my last test shows TSH 1.1 But I am not feeling good or any better.

My ft4 says 16 any supporting documents for the t4?

Btw monitor my health has dispatched the fullt thyroid test, I am excited about that.

[SlowDragon Administrator in reply to Mividauk2]

so wait and do Monitor My Health test and then take results in

What’s the range on Ft4 result

All four vitamins need to be at optimal levels

Low vitamin levels tend to lower TSH making it harder to get dose increase in levothyroxine

[Mividauk2 in reply to SlowDragon]

Ft4 range is (12 -22)

[SlowDragon Administrator in reply to Mividauk2]

FT4: 16 pmol/l (Range 12 - 22)

So Ft4 only 40.00% through range

Most people when adequately treated on just levothyroxine will have Ft4 at least 70-80% through range

[Mividauk2 in reply to SlowDragon]

Thank you, Do you know of any links that support this, any NICE links?

[SlowDragon Administrator in reply to Mividauk2]

Guidelines I gave you on dose levothyroxine by weight

That if you have symptoms dose levothyroxine should be increased

NHS England Liothyronine guidelines July 2019

 

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

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

[Mividauk2 in reply to SlowDragon]

I need to find a place to weigh myself now.

[tattybogle]

IF the last thyroid blood tests they did was that one in November ? .. and IF the TSH 5.5 was over the reference range ( pretty sure it will be ~you need to look for the reference range ~should be on there somewhere ) .... Then nice says "aim to keep within reference range" so you can use that .

NICE thyroid guidelines say "3 months" (not 6-8 weeks) for repeat blood tests ... so if you had NOT been on 75mcg for 3 months BEFORE that November blood test .. then unfortunately they could say say "we are waiting 3 months to see the effect of 75mcg" .

But ...if they DO say that ,then they DO have to test again "3 months after you started on 75mcg" which must be reasonably soon ? .....the NICE guideline does very clearly say "3 months... until you have two similar results WITHIN THE REFERENCE RANGE"

(Note* There IS a limit on GP's ordering TSH 'retests' at some labs , usually "no retest within 3 months if the last TSH was in range " ... so if your latest TSH was OVER the reference range, then a retest should be allowed by the lab whenever the GP orders it .... even if it less than 3 months since the last one )

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

"1.4.1Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.

1.4.2Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.

Adults

1.4.3For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.

1.4.4Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine.

~~~~~~~~~~~~~~~~~~~

1.5.4Consider 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."

[Mividauk2 in reply to tattybogle]

Hi. I saw those in the website but it doesn't help my request.

my latest thyroid test was the 6th Jan and says TSH 1.1 and FT4 16.0.

They only started treating me in September with 50 mg, October went up to 75 mg and I am still now in Jan in 75 mg.

Symptoms are not any better

[tattybogle in reply to Mividauk2]

it can STILL be used ,even though TSH is now 1.1

"If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression"

" TSH suppression" really means "TSH unmeasurable ie less than the tests can count " ~ However your GP may interpret it as "TSH below range" ..... but whichever definition they insist on .... 75mcg dose has NOT suppressed your TSH, and they DO NOT KNOW if 87.5mcg or even 100mcg will suppress your TSH unless they try it .

The NICE guideline clearly says they can adjust dose if symptoms persist ....so you point to that bit and argue that your symptoms persist and they have a significant effect of your daily life/ability to function , and therefore you would like them to follow their own guidelines to try adjusting your dose to try to achieve optimal wellbeing...

present your request as 'quite reasonably asking for a trial of 'x' dose for 6 months to see what happens to my symptoms and blood' NOT as a demand to increase dose and stay on it forever regardless of bloods.

[Mividauk2 in reply to tattybogle]

Thank you.

[SlowDragon Administrator]

Serum ferritin 36 ug/L (13 - 150)

Serum vitamin B12 372 ng/L (197 - 771)

Serum Folate 4.1 ug (3.9 -26.8)

Combined total vit 2 + d3 lvl 67 nmol/L

All these are far too low and result in low TSH

Working on improving low vitamin levels will enable you to get dose increase in levothyroxine

Are you now taking daily B12 and vitamin D

Adding separate vitamin B complex 1-2 weeks after starting separate b12

Meanwhile working on improving very low ferritin by increasing iron rich foods in your diet

[Mividauk2 in reply to SlowDragon]

Started b12 this morning and I felt the difference.

[SlowDragon Administrator in reply to Mividauk2]

So in weeks time add vitamin B complex

Meanwhile working on improving low ferritin levels

Red meat every day. Liver or liver pate once a week

Orange juice with meal. Etc etc

Start vitamin D supplements week or so after starting B complex

Lastly add magnesium supplement afternoon or bedtime (must be four hours away from levothyroxine)

[Mividauk2 in reply to SlowDragon]

Meat is part of my diet but I am adding orange juice to the meals. I am adding liver to my diet too.I been taking magnesium for a long time.

Thank you