Help with results: A little bit of history first... - Thyroid UK

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Help with results

kd035050 profile image
6 Replies

A little bit of history first. Was diagnosed as hypo about 15 years ago. I have felt tired for at least 20+ years. Nothing has really improved in 20 years. Now in my mid forties I have lost weight, started eating healthier and want to finally effect change in my tiredness.

Feb 2020 75 levo, daily multivitamin

TSH 2.25(0.35-5)

25 OH Vit D 80nmol/L

Ferritin 69ug/L (15-200)

Folate 6.5ug/L (3-20)

Vit B12 325ng/L (187-883)

Doctor increased me to 125 levo which seemed like a big jump to me but hey ho I'll give it a go. Was a bit dizzy at the start but now feel just as before, still tired and lethargic. I also wanted a clean slate with testing so stopped taking my multivitamins, doctor did not want to retest vitamin levels as they were all normal above.

4th August 2020

TSH <0.01 (0.35-5)

Free T4 14.4 (9-21)

Free T3 3.9 (3-6)

Just got these results today and doctors called to arrange a telephone appt for tomorrow. I am not sure what I should be asking tomorrow. I am expecting the doctor to reduce levo back to 100 or maybe even back to 75. I had asked for antibody testing but this was not done.

Any advice appreciated.

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6 Replies
SlowDragon profile image
SlowDragonAdministrator

Levothyroxine is usually only increased in 25mcg steps....so it might be a bit too much too soon

But Ft4 and Ft3 are both low in range.

Have you had change in brand of levothyroxine

Guidelines on dose by weight

Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

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.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Multivitamins are never recommended on here ...

healthunlocked.com/thyroidu...

You need to test vitamin D, folate, ferritin and B12 regularly and supplement just what’s needed

Feb results

25 OH Vit D 80nmol/L - OK

Ferritin 69ug/L (15-200) - good

Folate 6.5ug/L (3-20) - low

Vit B12 325ng/L (187-883) - low

Suggest you retest BEFORE starting any supplements

Plus get thyroid antibodies tested

List of private testing options

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

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

kd035050 profile image
kd035050 in reply toSlowDragon

Thanks for the reply SlowDragon.

What do you suggest I say tomorrow when the GP calls me?

If he suggests a reduction in levo to 100/75 is that advisable? Or should I stick to 125 and retest in a couple months? I really have no clue how to proceed but I am sick of feeling tired, cold, chillblains, losing hair etc

If GP does not agree to test I will arrange antibody and vitamin tests myself and take it from there I guess.

humanbean profile image
humanbean

If you currently take 125mcg Levo per day but you want to experiment with reducing your dose, then why not say nothing to the doctor and take just a 100mcg tablet per day. You could stockpile some 25mcg tablets just in case you wanted to raise your dose in future.

I suspect your doctor might reduce your dose anyway, whether you like it or not, because your TSH is very low.

However, your Free T4 is only 45% of the way through the range and your FT3 is only 30% of the way through the range. I would say you are under-medicated. Most people want their FT4 to be substantially higher in range - perhaps 60% or even a tad higher. And FT3 often needs to be 50% or more of the way through the range. But everyone needs to find their own optimal levels - with thyroid there is no "one size fits all" despite the fact that doctors like to think so because it makes their jobs easier.

kd035050 profile image
kd035050 in reply tohumanbean

Thanks for the reply humanbean. I think I would like to get the Free T4 and FT3 higher but that is unlikely especially if the GP reduces my levo today as I am expecting.

I feel no difference between taking 75 six months ago or 125 now really. If my dose was increased to 150 for example would that raise Free T4 and FT3?

Thanks

kd035050 profile image
kd035050

Just off the phone with GP who suggested as expected to reduce levo to 100. He says he is happy with a suppressed TSH IF symptoms have improved. My symptoms have not improved so he sees no point. He told me endocrinologists are not interested in Free T4 or Free T3 only in TSH and if I had a referral to an endo they would say the same as him as T4 and T3 are in normal range.

He did agree to a recheck of vitamins and a coeliac test now. A retest of TSH only in 6 weeks. At this point I will pay for a full thyroid check myself as well.

kd035050 profile image
kd035050

Just an update here, with Levo dropped to 100, my TSH increased to 0.6. GP was happy even though my symptoms remain and he suggested a check in a year and goodbye!

I was deflated and unsure what to do. Out of the blue I received a call from another gp at the same surgery who wanted to help me? She has given me vitamin advice, selenium & ace, vitamin d, multivitamin every other day. She has increased my Levo to 150, even if it suppresses my TSH and a recheck in 4-6 weeks. This sounds positive to me....what should I expect with my bloods in 4 weeks? Any advice greatfully received.

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