Am I wrong

[shelly2510]

So just a little info. I am currently on 125mg levo. Was on 100mg till last August. I have been tired all the time. After the increase they did another blood test last year and claimed normal. The symptoms are still there. Doctors have said I am not sue another blood test. What am I meant ti do

[shelly2510]

Here my other tests

My free ts

[greygoose in reply to shelly2510]

Well, they're not your Free Ts, because there's only the FT4. That is high, but that doesn't mean much without the FT3. But doctors just don't understand that. You're probably a poor converter, and your FT3 is low, causing your fatigue. But, even if they did the FT3 and it was low, they wouldn't do anything about it because they just don't care. They don't care how you feel.

So, all you can do - if possible - is get private testing, with antibodies and nutrients, and see what you can do yourself.

I can't read your first page of results - too small and blurry - but I'm guessing they are TSH results, and they're in-range. And that's all doctors care about - for them, if it's in-range it has to be good and you're making a fuss about nothing - it's all in your head! So, you honestly aren't going to get any more help out of them, and it's down to you now to look after yourself. And full testing is the first step.

[SlowDragon Administrator]

welcome to the forum

Just testing TSH and Ft4 is completely inadequate

Do you know if you have autoimmune thyroid disease

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[shelly2510]

Here is a clear image

Tst

[tattybogle]

if i've read it right ( bit blurry) :

the Aug TSH was to high 11.54[0.27 -4.2]

fT4 pretty low 11.6 [10 -21] ..... so they increased your dose .

October TSH still says 'abnormal '....is the TSH still over range at 4. something ? , or is it below range ?

fT4 relatively high at 19 [10 - 21]

To say you 'aren't due a retest yet' is incorrect .. they don't retest more than annually IF results are stable, and IF the TSH is in range... it's not and you have symptoms , so they should still be looking to get it in range. not fobbing you off with annual testing .

Since TSH was clearly still abnormal at October retest, then by rights they should be willing to retest now . especially since you are having symptoms.

since fT4 level was looking fairly high in Oct , it may be that your TSH was just taking a long time to change (see the guideline below about high TSH sometimes taking up to 6 mths).... but they shouldn't just assume it will be ok and ignore you for a whole year with an abnormal TSH result ......... they should have rechecked your bloods after a few more months to see if it has gone back into range or if dose needed adjusting further.

So asking for a retest now is perfectly reasonable. Try pushing them harder .Use these :

NHS guidelines plainly tell GP's to keep TSH 'in range' ..

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

"1.4 Follow-up and monitoring of primary hypothyroidism

Tests for follow-up and monitoring of primary hypothyroidism

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."

[SlowDragon Administrator]

Do you always get same brand levothyroxine at each prescription

Always test as advised

What vitamin supplements are you taking

Approximately how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is around 1.6mcg per kilo of your weight per day

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...