Thoughts on latest test?

[Kirstyrc]

Started 50mcg of levo on 29th April 2023 for a TSH of 31 (0.27 - 4.20 lab ranges) and a FT4 of 9 (lab ranges 12 - 22). On 26th May it came down to 4.16 and on my most recent test on 13th June it came down to 3.1. Still not feeling great, legs still feel super heavy and stiff which was one of my main symptoms at diagnosis. Working on vitamins and GP did not test FT4 on this text. Got a follow up call next Tuesday with the GP to decide what to do. No TPO antibodies. Any advice on what to ask and suggest at next appointment? Thoughts are to just continue on levo at 50mcg for the next few months and see how levels respond then.

[SeasideSusie Remembering]

Kirstyrc

50mcg is just a starter dose.

The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well. Your TSH is still way too high and you really need at least FT4 added to the test panel but unfortunately it's often not done with GP.

You've said it all here, which should tell you that you need an increase:

Still not feeling great, legs still feel super heavy and stiff which was one of my main symptoms at diagnosis.

You need the next increment, dose increased to 75mcg and retest in 6-8 weeks or so.

Maybe re-read responses to your previous post here:

healthunlocked.com/thyroidu...

Remember to test as we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.

In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:

healthunlocked.com/thyroidu...

If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw. If taking NDT or T3 then last dose should be 8-12 hours before blood draw, split dose and adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 3-7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

[Kirstyrc in reply to SeasideSusie]

Thanks for such a quick response Susie. I know to aim for below 2, below 1 is even better. I discussed this with my GP who said that is only important to aim for lower if I am trying to get pregnant. Will absolutely push for another test to test T4 also. He suggested referring me to an endo to discuss possibly prescribing T3, despite the fact they have never tested my T3. I am open to the idea of convincing him to increase to 75mcg, but worried about pushing myself into hyper as my TSH is continuing to come down. I am only 7 weeks into treatment, so will be interesting to see what happens from 8 weeks onwards.

I actually tested at 8am, as couldn't get a 9am appointment, but will consider this for my next test. my last dose of biotin in my b complex was taken at midday on Tuesday 6th June, so not anticipating this has an impact.

Have re-read my old post prior to posting this - seems as though the next dose is recommended but will have to see what GP says.

[SlowDragon Administrator in reply to Kirstyrc]

You GP doesn’t understand….levothyroxine doesn’t top up failing thyroid it replaces it

Essential to be on high enough dose

Dose is increased slowly upwards in 25mcg steps over 6-12 months until on full replacement dose

Also ESSENTIAL to test and maintain OPTIMAL vitamin D, folate, B12 and ferritin

NICE guidelines on full replacement dose

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.

Also here 

cks.nice.org.uk/topics/hypo...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[Kirstyrc in reply to SlowDragon]

Really sound advice and links, thank you.

My takeaway from that is I would have been better off re-testing at 8 weeks/2 months rather than 4 weeks and 6 weeks? Luckily I have a randox health test at home to use if I have to wait another 8 weeks for a test.

Lots of reference there to getting TSH within range. The issue I have is I am in range, which is what my GP will and has argued.

[SlowDragon Administrator in reply to Kirstyrc]

Most important results are always Ft3 followed by Ft4….NOT TSH

[Kirstyrc in reply to SlowDragon]

Time to push them to test that then. Is testing every 2 months more advisable than 4 - 6 weeks?

[SlowDragon Administrator in reply to Kirstyrc]

Minimum 6 weeks…..

Approx how much do you weigh in kilo?

Once you get nearer complete replacement (approximately around 1.6mcg per kilo)

some need more, a few need a bit less

…..waiting 8-12 weeks after final minor dose adjustments

[Kirstyrc in reply to SlowDragon]

Okay good to know. I weight approx 98kg, so there is definitely room for more based on that.

[SlowDragon Administrator in reply to Kirstyrc]

so highly likely to need at least 125mcg or 150mcg levothyroxine per day

Dose is increased SLOWLY Upwards over 12-18 months

[Kirstyrc in reply to SlowDragon]

Thank you, I will mention the weight recommendation to my as an argument for increasing levo when we next review. Should I expect to see such a lowering of TSH on a dose of 50mcg if my body could be capable of managing more levo? Or would it be more typical to see a resistance to my tsh lowering?

[SlowDragon Administrator in reply to Kirstyrc]

Typically when dose is started or increased….TSH drops

Over next few weeks/months as your body gets use to levothyroxine dose and metabolism improves TSH will slowly start to increase

When hypothyroid/under medicated low vitamin levels are EXTREMELY common due to low stomach acid resulting in poor nutrient absorption

Low vitamin levels tend to lower TSH

Essential to maintain OPTIMAL vitamin levels for good conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

On levothyroxine TSH should always be below 2

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

Significant number of thyroid patients will have very low or suppressed TSH…..when adequately treated

[Kirstyrc in reply to SlowDragon]

Interesting to know re vitamin levels lowering TSH, as my B12 seemed to drop dramatically in the space of 1 month between blood tests and I stopped my b complex for 1 week leading to the test. Working on supplementation for that. Will argue my point for a dosage increase to 75mcg. Think I am armed with enough from your guidance and the NICE guidelines. I have since read that a lab will often only perform an FT4 test IF TSH is abnormal, which might explain why my "thyroid function tests" have only been reporting tsh on the last 2 tests.

[SlowDragon Administrator in reply to Kirstyrc]

And why thousands of U.K. patients test privately

[Kirstyrc in reply to SlowDragon]

Hi SlowDragon, hope you don't mind me asking for advice again. GP has refused a dosage increase based on my latest TSH. Has written to the hospital specifically requesting TSH, FT4 and FT3 are tested, next steps would be writing to an endo to see their thoughts on a way forward. Come Saturday, I have been on levo for 8 weeks. Would you recommend waiting another week or 2 before testing, to give my TSH chance to creep up if it is going to?

[SlowDragon Administrator in reply to Kirstyrc]

13th June it came down to 3.1. 

So TSH is still too high and there’s already room for an increase

Make sure next test is early morning, ideally just be 9am….. only water between waking and test and last dose Levothyroxine 24 hours before test

If TSH is over 2 (and really if over 1) then ready for next dose increase

Ft4 at least 60-70% through range minimum

And FT3 at least 50-60% through range

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...

LEVO DOSE SHOULD NOT BE DETERMINED BY TSH

Diogenes/Toft paper:

bmcendocrdisord.biomedcentr...

healthunlocked.com/thyroidu...

The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:

Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis

February 2020 Journal of Clinical and Translational Endocrinology 19:100219

DOI: 10.1016/j.jcte.2020.100219

LicenseCC BY-NC-ND 4.0

Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich

LlINK TO PAPER: 

ncbi.nlm.nih.gov/pubmed/320...

[Kirstyrc in reply to SlowDragon]

Thank you as always. I made many of these points to my GP, including TSH ideally being below 1 or 2 at the most for optimal wellbeing, my weight allowing for my levo potentially and treating based on symptoms but he continuously argued that he would be negligent increasing to 75mcg based on my TSH. Argued that TSH wasn't important although pleased to see a decrease in it. Instead he insisted on tests to determine FT4 and FT3 with the view to seek guidance from an endo on possible T3 medication. I've never experienced an endo before, but can't help wonder if an endos initial advice would be to just increase my levo?

[SlowDragon Administrator in reply to Kirstyrc]

I've never experienced an endo before, but can't help wonder if an endos initial advice would be to just increase my levo

Yes …..almost certainly