Appointment with endocrinologist due in Decembe... - Thyroid UK

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Appointment with endocrinologist due in December....help!!!!

Min789 profile image
7 Replies

Hello, I posted a few months ago after my doctor finally put my levothyroxine back to the amount I was on before he lowered it and made me feel exceedingly unwell. I was on 125mcg 5 days and 100mcg for two days before he increased to 125 mcg then 150 mcg. Before he raised my levothyroxine my blood test results in June this year after fasting were

TSH 0.19 (0.35-5.5)

T4 15.6 (10.00-19.8)

T3 3.8 (3.5-6.5)

In November my test results are now

TSH 0.03 (0.35-5.5)

T4 23.5 (10.5-21)

T3 6.1 (3.5-6.5)

Got a call from surgery to say that doctor thinks I am slightly over medicated but as I am seeing the endocrinologist in December he will let him decide what to do. This is the first time in 35 years since my thyroidectomy I have seen an endo.

As you can see my TSH was still under range when I felt very unwell and it is even more under range now and also my T4 is over range. I assume the endocrinologist will want to lower my medication and don't know whether I should argue against it as I do not feel over medicated and my Fitbit has my resting heartbeat at 64 bpm.

My question is do you think I should lower my dosage and if not then what possible argument can I give for him to keep it as it is?

Dreading this appointment, do you also think that I should suggest he lower my levothyroxine and see if he will prescribe me T3, although I seem to be ok on just levothyroxine as long as I can have a high enough amount?

My TSH has always been low but until I moved and got a new doctor it was never an issue.

Hope you can give me advice of what to do.

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SlowDragon profile image
SlowDragonAdministrator

That's what happens on Levothyroxine...TSH should be low

Provided FT3 is within range, which it is, you are not over medicated

Current obsession with getting TSH in range is incorrect for most people on any replacement thyroid hormones

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

You really need vitamin D, folate, ferritin and B12 tested too. These are frequently too low and improving to optimal can help improve conversion of FT4 to FT3

Ask GP or get tested privately

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your

doctor

please email Dionne at

tukadmin@thyroiduk.org

If you feel well then this dose is correct for you

Suggest you take in 2-3 printed weekly summaries from Fitbit and highlight your resting heart rate

Research into Low TSH no heart issues

academic.oup.com/jcem/artic...

In summary, patients on long-term T4 with either an increased serum TSH (>4 mU/liter) or a suppressed TSH (<0.03 mU/liter) have an increased risk of cardiovascular disease, dysrhythmias, and fractures when compared with patients with a TSH within the laboratory reference range. Patients with a low, but not suppressed, TSH (0.04–0.4 mU/liter) had no increased risk of these outcomes in this study.

Suppressed TSH not a problem

heart.bmj.com/content/84/4/455

Over replacement with thyroxine?

There is some concern that administering thyroxine in a dose which suppresses serum TSH may provoke significant cardiovascular problems, including abnormal ventricular diastolic relaxation, a reduced exercise capacity, an increase in mean basal heart rate, and atrial premature contractions.12 Apart from an increase in left ventricular mass index within the normal range, these observations have not been verified.13 Moreover, there is no evidence, despite the findings of the Framingham study, that a suppressed serum TSH concentration in a patient taking thyroxine in whom serum T3 is unequivocally normal is a risk factor for atrial fibrillation.

Min789 profile image
Min789 in reply to SlowDragon

Thank you Slowdragon for your reply. I have had all of my vitamins tested and I put results in a previous post. On the advice of this forum I now take B Complex and Vitamin D supplements. B 12 was good but Folate and Ferritin were low in range. Also eat liver once a week and liver pate twice a week.

Last dose of levothyroxine was 24 hours before blood test and fasted overnight from 8pm. Blood test was at 8.30am.

Reading the article you advised, I can see that it says a TSH result of 0.03 and under (which I have) would be classed as low/suppressed which could lead to increased mortality, attrial fibrillation and bone fractures. A reading of 0.04 and above was stated as being ok.

So maybe I should decrease my levothyroxine?

SlowDragon profile image
SlowDragonAdministrator in reply to Min789

Professor Toft says....some people need TSH completely suppressed on just Levothyroxine in order to have high enough FT3

How much Levothyroxine are you currently taking?

Have you retested vitamin levels since these results?

healthunlocked.com/thyroidu....

If endo is unhappy and wants to reduce Levothyroxine dose .....you could ask for T3 prescribed alongside Levothyroxine .....as that's far more expensive option they are more likely to let you stay on just Levothyroxine

If you feel you are over treated you could try tiny tiny reduction (perhaps just 12.5mcg or 25mcg maximum once per week )

Personally I would retest vitamin levels before doing anything

Min789 profile image
Min789 in reply to SlowDragon

I am currently taking 150mcg of thyroxine. Felt very unwell on 125mcg. My doctor is unlikely to test my vitamin levels as he said they were fine when he tested them in August. As I said before, my Folate and Ferritin were slightly low in range but I now take supplements to combat this.

I did wonder about suggesting T3 as I think I was told on this forum that my conversion isn't good, so could be the way to go if I need to. But I'm also aware that taking t3 is not the easiest avenue to go down so would prefer to stay on levothyroxine if possible.

Going on my latest blood test results could you tell me what percentage I am through the ranges for T4 and T3?

SlowDragon profile image
SlowDragonAdministrator in reply to Min789

I think you need to retest vitamin levels....most of us forced to do so privately

Handy calculator for working out % through range

chorobytarczycy.eu/kalkulator

FT4 120% through range

FT3 86% through range

FT3 is about perfect

It's much easier to take just Levothyroxine

Min789 profile image
Min789 in reply to SlowDragon

I will get my vitamins retested before I see Endocrinologist. So do you think I have a problem with conversion based on those percentages?

SlowDragon profile image
SlowDragonAdministrator in reply to Min789

Well four months ago your results were disastrous

healthunlocked.com/thyroidu....

FT4 57% through range

FT3 only 10% through range

So difference between the two results of 47%

Now, having increased Levothyroxine and improved vitamin levels conversion is better

You have reduced the difference between the two to 34%

If you reduced Levothyroxine to within top of range ....say 85% through range .....FT3 would drop down to 50% ...or less ....i.e. Too low

So if endo wants FT4 kept within range you would have to have addition of 2-3 small doses of T3 per day ....and a TSH would almost certainly be suppressed on any T3

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